Making the most of now

This year has seen the death from cancer of so many household names. I will certainly be in good company if I join them. Alan Rickman, such a great baddie. Bowie, the sound of my youth and two of our brilliant female comedians Caroline Aherne and Victoria Wood. But death from cancer is not selective. When I was first diagnosed as Stage IV I began to read discussions from chat rooms full of men and women with advanced cancer. I still read them. There is a degree of comfort feeling I am not alone, listening to other voices sharing their fears and hopes. I do not join the discussions, but I do read them. Often the posts begin ‘goodbye to another angel’. Losing people to cancer is an occupational hazard. I do not know many people personally with advanced cancer, but the number has been growing as we have a habit of seeking each other out. And this adds a painfully real, less virtual, less abstract aspect to the process. There is one thing listening to ‘singlemum39’ describe her shock at a poor scan result, there is another if you have started to build a relationship with an actual flesh and blood person. Bad news is communally owned. 

I had a fantastic few weeks after my last scan, following my wobble, which gave me a window of freedom and I stuffed it with as much as I could fit in. I spent a week in the Peak District. I took Ella and Tom to Madrid and had such a special time. Spain has been part of my life and now it is part of the children’s also. I have felt so fit and well I had expected the scan I had last week to show even further reduction. But it did not. So as I write I am not as confident as wanted to be. The scan showed no growth, and the cancer load is still relatively low compared with when I was first diagnosed, but there was some suggestion of what is called ‘enhancement’. This is where the contrast dye of the CT scan is taken up by the blood tumor in a more concentrated way which can indicate greater activity. The optimistic view is that I am stable and this was simply a variation in CT scans taken at different times or the pessimistic view is that my remission could be coming to an end. I am (or was) naturally a half glass full person but it is so difficult to ignore the pessimistic reading, simply because I need to be prepared to act fast if indeed this is the case. 

I continue my supplement regime and have added to it. I now take Poly MVA. This is an extortionately expensive mixture but I have read enough about it that at the very least I believe it is a powerful nutritional supplement and at most there are clearly many who believe it was critical to supporting remission. It is a mix of minerals, vitamins and amino acids including a metal, palladium, which partly explains the cost. Read more about this on https://www.cancertutor.com/polymva/ 

I am also investigating Gc Maf/Goleic. I am still undecided. I had this up my sleeve if current treatments started to fail. It does not work with chemotherapy and I remain on Xeloda as one of my treatments so now is probably not the right time. I may also be stable and so want would need more evidence that things were going in the wrong direction before I make a decision. The next treatment on the cards, if I stick with my oncologists advice would be an IV chemotherapy which to me feels like torture. Advanced cancer is a marathon not a sprint so I hear, and those who believe you can heal and keep the cancer in check advise not to expect any quick results with many of the alternative therapies. If it were not in my liver I would feel ready for the marathon, but the fact it got so bad in February makes me nervous as I cannot afford to wait too long in the hopes something will work. 

The main tragedy for me over this period was Brexit. I am still in mourning. I simply cannot believe that enough people were bonkers enough (sorry those of you who voted out but this was a mad decision) to vote leave. And what have we seen since. The disappearance of the leaders of the Brexit movement. No viable plan and the prospect of having to sign up to EU regulations and pay the same contribution in order to get the trade deals we will need. But without the voice inside to influence. A bit like Norway. Lawyers and advisers on trade deals are going to make a fortune. I am embarrassed when I talk to my non British friends who all cannot believe what a home goal this has been. My Spanish friends say that in Spain you would need way more than 50% of the vote for a decision that momentous. I am embarrassed for my Polish friends, who have lived and worked here for years and worry for their future. If 16 year old Scots could vote in a referendum for independence why could 16 year olds across the UK vote in this referendum. Tom, who has studied politics for the last 2 years, was a month or so too young to vote yet by the time we work out what is going to replace this he will be well into his 20s while many of the older generation who overwhelming voted out may not be here by then to live the reality. And then – on the other side of the pond. Trump. How? 

As I continue to work my way through my old books and diaries I found a book I studied for Spanish A’level which had a profound impact on my life. It is ‘San Manuel, Bueno, Martir’ – Saint Manuel, the good the martyr, written by an author Miguel Unamuno who was obsessed by death, and what happens after death. The protagonist, San Manuel is in part a reflection of Unamuno who uses this character to explore his own feelings about death. It is set in pre civil war Spain, in a village at a time when poverty was all consuming. Manuel is a hero to the people of his parish. But it is a story of sacrifice. Manuel cannot believe that life exists after death but cannot bear the pain that this reality would bring to his people whose lives are already so difficult. Belief in a glorious life in heaven after death helps people put with up with their everyday misery. How can he share his certain knowledge that there is no life after death and make their lives even more miserable? Better to sacrifice himself and continue to preach in the salvation that awaits his flock even though doing so pains him deeply. As I confront death I have been exploring my own beliefs. I simply cannot believe either that there is anything after we die. Certainly we get recycled through the soil and plants and remain therefore alive in some sense but not an afterlife, a heaven that I can believe in and look forward to.  I would like to believe, a strategy to manage the potential reality of dying. In Gottingen there is a beautiful Catholic Church, it is all white inside, probably what my heaven would look like and I go there every time I visit the city and I pray and pray. Being raised as a Catholic, church has always been a space for me to reflect and gather my thoughts. I find myself visiting Churches more frequently now. Whether I am praying or meditating they offer me a place to calm my mind. And there is always the hope that there will be some revelation which changes me, is this a desire for hypnotism, some trick of the brain that switches me into deeply believing in a better place so that I can manage my current journey.

In Madrid with Ella and Tom we visited lots of churches and museums. Had I not been ill perhaps we would never have arranged a trip like this. But I am filling my time with these special moments with family and friends and getting such deep joy from it. I could have lived a longer life but without the depths of happiness that I feel often these days as I take pleasure in everyday. The weather was absolutely beautiful, cloudless and hot. We spent hours in the Prado and the Retiro Park. Picasso’s Guernica is now displayed in the Museum of Queen Sofia. The museum has three major exhibitions covering different parts of Spain’s more recent history (before, during and post the civil war). As always happens in museums to start with you head to the parts you are most interested to see and then you branch out to other areas, and as the time goes by and your feet start aching you begin speeding, up racing through rooms of great artistic works, until you totally run out of steam. I am not an artist and have never studied art and have a terrible habit of completely deriding certain pieces of modern art. There was one particular part of the Queen Sofia museum which displayed works which frankly, to me, felt very much like the emperors new clothes. I started through the exhibition partly wondering what was going on, and if really someone was taking the micky. Were all the other visitors to the exhibition deriving deep and meaningful pleasure from these non works (they included for example a series of squared paper, the sort you might do maths homework on, framed, each with 3 letters of the alphabet in the middle – really?).  As we progressed through the exhibition Tom and I connected in our confusion and couldn’t help sniggering at some of what we saw, I am sure educated art historians would consider us philistines. Ella made a good attempt at defending the work, Tom and I were not convinced. The piece de resitance was a room, which was essentially empty. We looked around it bemused trying to work out if perhaps it was a corridor, but no, it was art. It’s title ‘Non specific space’. That was enough. Tom and I almost roared with laughter. In the following room there was a film of a woman crawling around the floor of the ‘Non Specific Space’ and some narrative about the artistic value of the space and how it allowed the observer to engage in the art directly. So when no one was looking we tried to recreate this engagement with the space – and I did a bit of surreptitious crawling so Tom could a photo of me before we got caught and possibly thrown out for our disrespectful behaviour. 

We also spent some very special time with one of my very best friends Maria who I so rarely see. I have posted a photo of us from our time at Harvard, where we met and 21 years later. 

In the Peak District I went on writing course and met some wonderful people in a beautiful setting. A lovely friend of mine Kirsty invited me. I have always wanted to write and imagined I would do this when I retired, I am partly living my retirement now – hopelessly knitting, gardening a little and now writing. The course and people inspired me. I have been trying to work out how best to capture the many memories of the kid’s childhood and now I have a plan. I am writing a series of very short stories made up of real events with a little imagination added. This will be a legacy for my kids and give me the opportunity to write. I still have far too much to do, I have barely touched my diaries, I have photos galore that still need organising, but during this recent phase of health I have been so busy doing other things I have not had time to fit them in. But I need to get a move on.  Here is one one my short stories

Death of a Hamster

Petal and Scar were hamsters, Dwarf hamsters to be precise. Dwarf hamsters, Louise was assured by the owner of the pet shop, could live together and not eat each other and given that both Ella and Tom were determined to have one each, it was either two dwarf hamsters and one cage or two Syrian hamsters and two cages. “Syrian hamsters do not usually tolerate the company of another hamster once they reach 6-10 weeks of age when fighting starts to occur - the golden rule is one hamster, one cage” Louise had read. Not dissimilar to human children after the equivalent number of years she mused. A hamster charter had been negotiated before Louise and Rupert had given in and agreed to letting them each have one. Cleaning the hamster cage regularly, checking they had water and food and playing with them was the children’s responsibility. They had signed in blood. Well almost. 

Petal and Scar did live happily together without violence towards each other, but they were definitely not the cuddly creatures the kids or Louise had imagined. Despite numerous attempts to pick them up they nipped at every opportunity. They ran far too fast to enjoy a gentle stroke and tried to escape frequently. The hamster charter obligations were rapidly broken as the disappointed children lost interest in their new pets. The weekly cage clean was added to Louise’s mountain of housework. When she could pin a child down to help she did, but the chase and wails of injustice was too much for her often and she alone took over responsibility for the animals, kicking herself for giving in to their pleas in the first place and believing they would fulfil their responsibilities.

One day Ella noticed that she had not seen Petal for a couple of days. She tentatively put her hand into the cage to remove the lid of the little plastic house the hamsters slept in, and there lay Petal, curled in a ball, clearly not very well at all. Suddenly interest in the hamsters soared to new heights. Hysteria set in and all four children, begged Louise to take her to the vet. Louise was certain that Petal was very close to death and privately hoped that she would expire quietly and without fuss or expense, on her own, over night. She convinced the children that she would discuss what to do next tomorrow and convinced them they should wait until then before deciding what to do. But the next day Petal was not better and still very much alive. Again the children cried for her to let them take her to the vet and again Louise procrastinated, knowing that such a trip would make the vet richer, her poorer and Petal would die all the same vet or no vet. The question was, how long would she hold out. Again she convinced the children to wait, this time until after school, as she had to go to work and there was no time to do anything until then. 

At five o’clock she called home from her office. Kasia, who helped her look after the children when she was a work answered the phone. No, Petal was no better and yes Petal was still alive. Ella grabbed the phone weeping, ‘Please Mummy can we take her to the vet so they can make her go to sleep?’ Louise said she needed to think and put the phone down. It was late, would there even be a vet open that evening? She consulted with her work colleagues. Why go to the vet? They said. There were plenty of ways to finish off a hamster. And they began to recount the possibilities. Drown it (but the you would have to blow dry it to get rid of the evidence of the act). Lie it behind the car wheel and reverse onto it. Throw it in a communal bin. Leave it in the path of a neighbourhood cat. What to do? What to do? Louise was conflicted when Virginia, the receptionist, protested. How could they possibly suggest such cruel and heartless things? In no time she had found a local vet, called them up and booked a 6 O’Clock slot. Louise had no choice. It was now 5.30 and she had to drive home, pick the kids up to get there in time. She called Kasia and asked her to transfer Petal into a transportable box, and get the children ready. They had already had their tea and the younger two were in their pyjamas so when Louise arrived home the four of them were lined up in a row outside the house, waiting for her. Ella holding a small box reverently. 

At the vets they piled in and registered with the receptionist. “Name” “ Louise Howes” Louise responded. “Not yours?” she said in a schoolmarmly sort of way, looking down at her through the glasses balanced on the tip of her nose “the pet”. “Oh, it’s Petal, Petal Howes”. Ella protested from beside Louise. “She’s not called Petal anymore Mum, we changed her name, don’t you remember, she’s Rose”. This only confirmed the receptionists obvious suspicion that this was yet another neglected creature that had been purchased by parents too weak to stand up to their children’s. They all sat down and waited.

When their time came, the vet called for Petal Howes and looked slightly taken aback to see this gaggle of young children follow their mother in. She was a young vet who, Louise concluded, communicated better with animals than she did with people. Petal was taken out of her box and placed in the middle of the examination table which stood in the middle of the room. The children arranged themselves around the outside and stared at her little body, struggling for breath. “If only she had waited for one more night thought Louise, this hamster was never going to make it through the night again.” But it was too late. 

The vet confirmed that Petal was very poorly indeed and it would be kinder to put her out of her misery. The language started to become a bit abstract for the younger children. Ella was certainly clear that Petal needed to be put to sleep, but for the other 3, a vet meant making Petal better.  They looked confused ‘put her out of her misery’? And the vet realised that perhaps she ought to speak in a manner that such young children might understand. Louise was relieved, it would be the vet and not Louise who would have to explain. “We will give her a little injection and she will just go to sleep and not wake up” the vet explained. The children began to understand and the tears began. The vet then looked up at Louise “Would you like to come and collect her tomorrow so you can take her home and bury her or we could cremate her here”.  “Cremation I think is the simplest” Anne mouthed, trying to indicate to the vet that this was a delicate discussion to be having with that particular audience. “What’s cremation Mummy?” asked Tom.  There was a dramatic silence as Louise stared hard at the vet, she raised the subject, she had to deal with it. Stuttering slightly, the vet replied “Well, um, you see, cremation is, well, when animals die, and people sometimes” Oh dear, she was digging herself deeper. Now the conversation had expanded to involve the cremation of people. “We burn them”. “Burn them! Why do you burn them?” The gentle tears rose to squeals of horror and hiccoughing sobs. It was time to go! Louise indicated she would be back to collect the body, thanked the vet, turned leaving Petal alone on the table, and ushered the children out, wailing and howling, through the full waiting room, up to the reception desk where she flustered as she tried to find her cheque book to pay the £25 fee for this disastrous trip.

I am in France now with my family, and were last week joined by my parents, sisters and their children. Every day seems to pass so quickly, if only I could slow down time. 

In September Rupert and I plan to go on a late 20th wedding anniversary holiday (last year was our 20th anniversary but we never celebrated it properly). I am hoping against hope that I stay healthy so that we can still go. Life with advanced cancer is very uncertain, planning becomes so difficult – but I will continue with my regime and sun and happiness of being together on holiday is bound to have an impact on my cells. They will find it very difficult to behave badly with all this love and enjoyment about.

A reprieve

My last entry was a difficult one. I had a significant wobble which I now like to think was a necessary and useful step along the way as it made me focus. After the worst of it, when my liver was swollen (“as you can see this is a much sicker looking liver than we had before” oncologist looking at scan results) I changed my treatment to the oral chemotherapy (Xeloda) and I continue my visits to Germany. After 9 weeks of this and on Xeloda (I do two weeks on one week off) I had a subsequent scan. So much hung on that scan. I am more aware that time may not be on my side and with summer here I have packed it full of places I want to go, people I want to see and things I want to do as a family. It is amazing how short a summer is. But all of this relies on me being well and so uncertainty overshadowed it all. It is funny how your horizons can so rapidly change. The end of the summer was my target. If the outcome of the scan had not been good I would be in a very different place today. 

I had only a short wait between the scan and the results. Waiting for the results you are in a state of limbo. Either they would be good (in which case my plans for the short term could all go ahead), or they would be bad (in which case, depending on how bad, I would have to action one of the possible treatment plans I have investigated and I would lose my window I so hoped for over the summer). The waiting room is the worst. You stare at people as they come in an out of the oncologists office, carrying papers and reports. Might one of those reports contain your results? Has he seen them yet? What can I read from the face of the breast care nurse? As it was, she sneaked me a thumbs up. Which I suppose tells me in the future that if there is no thumbs up the results will not be so favourable. She did so only seconds before I went in. My oncologist immediately handed me the brief report of my scan which started with ‘excellent response in the liver’. This is the first excellent, or even vaguely good report I have had from a scan. To date I have had 5 scans since my diagnosis last January and they have gone from baseline, no change, no change, (despite chemotherapy), some progression and then a ‘much sicker looking liver’. So to get an ‘excellent response’ was pretty impressive and much better an outcome than any of the scenarios I hd prepared for. I looked at the scan (which I hate doing) and really it did not look too bad (at least not compared with the previous one). So while momentarily celebrating this result I jumped immediately in my mind to - how long might this last? But for now just getting a green light for the first part of my summer (I have another scan at the end of July) felt like luxury. 

I spoke last time about facing my fears. The main one is the prospect of leaving my children. Ned is the youngest and possibly the least aware of what is going on. Actually that would be unfair, it is difficult to altogether forget I have cancer but we work very hard to make sure life feels as normal as possible and is not dominated by my situation. I think the older ones are aware that I may die and I always answer any question they have truthfully, Ned does not ask questions and if I were to go sooner rather than later he would have more time as a child without his mother. I hate the idea that he might consider what life would be like without me there but at the same time I want to know that he has at least considered it as a possibility, so that he can explore what that might feel like and in some sense be more prepared than were I to be run over a bus with no warning. I was not sure how I would raise it with him, or when would be the best time. As it is I am looking pretty well and to all intents and purposes, if you didn’t know, it would be difficult to tell there was anything wrong. I had thought I would raise this as and when I became more obviously unwell. But the opportunity arose and I took it, encouraged by some videos I watched on a site called Wiston’s Wishes, which is a site targeted at supporting bereaved children. These videos followed families where one parent has a terminal illness. There were various professionals involved in each case including a child psychologist, and the message from this was very clearly that it is really important to engage your children fully and in good time. As I still have aspirations of cheating death, I need to balance how soon we address this directly with the kids, but certainly ensuring, at this stage, that they are aware it is a possibility, is important. 

So the opportunity came one day a few weeks ago when I was driving Ned somewhere. We were alone in the car together. He told me that he had watched a video at school about the key to success and that what mattered most was not how intelligent someone was but how much grit they have. Now Ned has lots of grit. He is a very determined and resourceful, but sensitive boy and he clearly liked the idea that grit was the key. This opened the opportunity to explore life and how grit can hold you in good stead. He had done a piece of homework for geography which had involved writing a diary from the perspective of a child in Syria who makes their way to Europe. He had to explore the various factors that influenced the child’s decision to, and ability, to flee and make his way on the treacherous route to the UK or Germany (Germany more like!). He had really enjoyed this piece and took such a long time working on it. So I used Syria as my example. I moved the conversation to how much grit those refugee children from Syria would have to have right now and how did he think he would cope if he was Syrian had lost both his parents. I decided to go big time, both parents, not just one. He immediately focused on how he would escape and what he would do - rather than the fact that he had lost both his parents. I tell you if there was a zombie apocolypse you would want Ned on your team.  I moved the conversation to life and how there will always be challenges and difficult times and the important thing is how you deal with them. Did he think he had any really big challenges in his life? He started looking around the car awkwardly and said yes he did. ‘What, my cancer?’ He nodded. So I went for the jugular. ‘Do you think you would be OK if I died?’. He looked a bit embarrassed - so I asked him if he had ever thought about it and he said he had. I was pleased he had. ‘So would you be OK if I died do you think’.  ‘Well, hmmm’ he looks around and then stares ahead a bit ‘Umm, I might cry for about an hour’ ‘Only an hour!!!?’ ‘ Well, maybe two’. And we turned the conversation into a joke as I berated him for the pathetically short time he thought he would cry for me. But the conversation was a real landmark forme. I felt relieved to have had it, and to know that he is not so naive as to not have considered this as a possibility. I know there will be lots more work to do, but I hope I have plenty of time for that. 

When my liver was bad I simply couldn’t imagine how I would fit in all the things I wanted to do before I die with my worklife. I love my work and so any decision to stop working, or cut down drastically really would be a significant move. At this point it would be symbolic of me starting a kind of countdown. But as I have just experienced, things can get pretty rocky and you can pull back from the edge unpredictably. I reckon the chances of pulling back from the edge reduce as I work my way through treatment options, but I hope if I have another wobble I will also have a chance of a redress. As it was, I was in the middle of my wobble and so arranged to talk to my boss, who I have worked with for many years and has been incredibly supportive, enabling me to work very flexibly and around my unpredictable treatment appointments and ups and downs. I talked about what the options were and we agreed that I should consider how much I felt I could work and they would support me in this. After my scan however, I feel in a completely different space, and for the past few weeks have honestly barely thought about my situation and have simply enjoyed every moment and continued working as before. I am probably consciously stopping my mind roving into that cancer space more than necessary as it is so all consuming. I just want to be me again, even for a short while and part of me is my work. Since my scan I have been to Copenhagen for 6 days to participate in the bi annual Women Deliver conference which was hosted there. In my field this is an amazing opportunity for those devoted to supporting women’s position in the world, health, educational, rights etc to come together and share learning, strategise together and it is a great opportunity to feel reinvigorated about the issues. 

Normally attending a conference like this would be par of the course in my work and I travelled regularly to places like Dar es Salaam (Tanzania) Kano in Northern Nigeria, Freetown (Sierra Leone) and Addis Abba (Ethiopia), Seattle in the States, Geneva and on. But I have not travelled for work since my diagnosis. We have reorganised how I work, but I have missed engaging with the many people I have worked with over the years I have worked in this field, and usually met in person on one or other of my work trips. As this is arguably the largest conference of its kind in this field with over 5 1/2 thousand delegates, many many people I have worked with over the years were also there. So in addition to the content of the conference it was so refreshing to be out and about, as I used to be, and meet up with people formally and informally. Most people I work with closely have heard about my situation either from me or indirectly through the grapevine, but there are a few who did not know. A couple of those I told in person when there. While we have worked together on and off over many years, I am unlikely to ever work with them again in any substantial way. And I wanted to say goodbye. I am taking my preparations very seriously. It was a privilege to be able to tell them how much I had enjoyed working with them and to hug them goodbye. I may well hang around for a long time but I may well not and if we all had the chance to say our goodbyes in person, weprobably would.  So I took advantage of being there with them. Perhaps it is kinder not to tell people, but I wanted to. 

In terms of Copenhagen, I had never been to Denmark before. The weather was pretty miserable and the conference centre was situated in the middle of a construction wasteland. I did make it into the centre once by taxi (until I realised that a short 9 minute journey had cost me about £32), and it was very pretty. But the wasteland we were in, together with the cold dank weather made me consider the motivations of those Viking invaders of the UK. Although they were probably disappointed by our weather when they got there. We had chosen the nearest, best value (cheap) hotel to the conference centre. It was a 10 minute walk between the two. The hotel was called the Cabin Metro and was built to look like a ship. And as you might expect (except that I hadn’t) the rooms were designed like cabins on aship - or rather a cross channel ferry. We travel to France each summer and take the Newhaven - Dieppe ferry. It takes 4 hours and we often book a cabin on the way back after the long drive to Dieppe. The hotel room was a minature version of a four man cabin. There were bunk beds, with a ladder hung on the wall to get to the top bunk, and the beds themselves were outrageously thin. I am not very big so they were fine for me but we had colleagues from Nigeria and Malawi who were definitely larger than I am and they had to stop themselves falling out of bed.

The conference itself was opened by the great and the good. The conference featured amazing women who have all made significant contributions to women’s progress in one way or another for example Gro Harlem Brundtland (first female Prime Minister of Norway); Graca Marchel (Mozambican politician and humanitarian and widow of Nelson Mandela) and Annie Lennox (UNAIDS ambassador and general rock star for AIDS). What an inspiration and motivation for all those if us who have worked in this field for years, a task which can at times feel thankless or hopeless or both. 

My feet were playing up from the Xeloda and so the walk between the conference centre and the hotel was hard, I bought 3 different types of shoes so I could change them frequently and vary the pressure points. I also tried taxis, even for this short distance, until I clocked the exchange rate and realised I would run out of money if I continued. I tried the metro once, on my way back from my trip to the centre. The ticket machine did not accept my card, rather looked like it did, twice, but never gave me a ticket. I rang my bank, who could see the transaction leave my account, but there was no one at the station to ask. So I travelled the Metro ticketless. It is fascinating because there are no ticket machines at entries and exits, in fact I did not have my non ticket checked once. People are expected to buy a ticket and there are random checks. Apparently Sweden is consistently the happiest country in the world in a survey that calculates happiness. It has one of the most gender balanced Parliaments in the world, I think beaten only by Rwanda. It also turns out to be my country in my office sweepstake for the Euro 2016. It may be very happy but I am not sure their football prowess is going to reward me.

The days were long for me and I missed home and my ability to follow my various supportive approaches. I did not have a juice for 5 whole days. The longest I have gone juiceless since March last year. There was not a juice bar to be seen. At the airport on the way home, however, there was the most amazing organic juice bar. I was like a child in a sweetshop. The queue through security was pretty long and I reached for a magazine I had picked up from home. It was a Sunday Times magazine and there was an article on the front I had wanted to read, so I had shoved it down the front of my bag. I had been carrying it around and would most likely have thrown it away once I got home, but given the queue, it was the easiest thing to get my hands on to fill the time while I queued. And as if by some twisted fate, in addition to the article I had wanted to read, there was one which featured a pretty twenty something “I was on my gap year when I my mother received a terminal cancer diagnosis”.

It was an article by a woman who, just like Ella, had found out that her mother was ill while on her gap year. In this case they waited until she got home to tell her. I am not sure Ella would have forgiven me had we done that. Her mother had lived for another 10 years and she was writing about her after her death. It was excruciatingly painful to read, but I could not put it down. It described the days and weeks after her death. Clearing out her things, looking at old memory boxes and working through her wardrobe. The section that had me biting my lip to hold the tears back described her telephone. She had been part of a family group chat and they kept her on it after her death, no one wanting to suggest they remove her until one day she wakes up and there is a message ‘Mum has left the chat’. Her contract must have come to an end. The loss she felt after this so modern a reminder of her mothers absence was palpable. I tried to think of the many virtual spaces I inhabit, and wondered what would become of them. Do they become shrines, historical repositories, fragments of life and memories? Can you save them or do the facebooks of this world suddenly decide that the period of inactivity has been too long and you have not accepted their new terms and conditions and therefore they are going to just close your account down without warning. I have a twitter account, which I was going to use to advocate for the things I care about in my area of work, but then I got cancer and could not work out how or if to use it anymore. These are just the obvious two, there are more through work, then family groups too. A very modern dilemma. 

I am in France at the moment, spending a week with Rupert. We did this last year and planned to do it again this year. The weather is atrocious but it is lovely to be together. We were joined at the weekend by my two best friends from my school years and their husbands - who are great great friends of us both. We have not spent such concentrated time together (without children) for a very very long time, possibly never. I have not laughed so much in ages, I almost choked on an olive I was laughing so much at one point (probably at a joke I made). They are both godmothers to Ella. We talked of the future among remembering the past. Rupert was sent a book by a friend called the Council of Dads. It was written by a man who learned he had a terminal cancer and he established what he called a Council of Dads made up of his very best friends so that they could keep him alive for his kids when he was gone. We decided we like this idea and that weekend was the beginnings of the Council of Mums that I will set up among my closest friends. We will set up a Council of Dad’s too, made up of Rupert’s closest friends, including my best friends husbands who have become some of Rupert’s closest friends, but their job will be to keep an eye on Rupert. It feels good to be building the structures that will remain if and when I am not here, to keep my loved ones supported. 

I continue with my supporting strategies for healing, I am getting better at exercising, I continue juicing, infra red saunas when I can, mediation daily (lots still to learn) and a range of supplements.  We have summer planned with the kids. Tom turns 18 soon and Ella 20 even sooner. Tom is in the middle of his A level exams and that will be the end of his school life. A me before cancer would perhaps have mourned the passing of childhood, but right now I feel every major landmark I am around for is a major achievement. Perhaps cancer will protect me from the impact of the children growing up and leaving home. I want nothing more than to see them confident and able to be independent having had a stable and loving childhood. I am close, but not close enough.  My focus on staying alive continues.

Charting the way ahead

What the last weeks have shown me is that fear is simply unbearable and I must find ways to get it under control. It achieves nothing. It spoils the now and it makes it almost impossible to think straight. The only way to deal with the fear is to face it down. By that I mean - work out what is it that I am actually afraid of and tackle it one by one. Even articulating to myself what those fears are is terrifying. But as I work through what they are it feels more like grabbing a nettle to avoid the sting. 

Accepting that death is inevitable sounds rather obvious given my situation but this has been what the last few weeks have been about emotionally. Of course death is inevitable for all of us and who knows when that day will come - but I think I had imagined I had years and now realise that, while I will fight tooth and nail for years that may not be possible. My breast care nurse recently discussed my referral to hospice care. A precaution and simply good to know where they are and start building a relationship with them. My Aunt was in a lovely Hospice and her death was so dignified. But it is not really what I want to be doing at this stage in my life. I know it is sensible but I have grand ambitions and I think my struggle has been that if I contemplate the end in any detail perhaps that will jinx my attempts to outwit death. Somehow my body and mind will know my heart is not in it 100%. 

Most of my fears relate to what will be left behind and in order to take control of these fears I need to understand what troubles me the most. The children and Rupert of course. My family and my friends too but my children and husband are what hit me the hardest when I think about my fears. They range from the very practical - how will the household timetable and logistics run? I, for most of their lives, have been the organiser in the background. I may over estimate how essential I am in this role, and the children are older now and the older ones pretty much take care of most of their movements but it is all those bits in the background that make it happen. Signing the permission slip for x trip, paying the Duke of Edinburgh fee via parent pay, fixing the date for the birthday party and related logistics, knowing where things are, thinking ahead to make sure uniform is washed before the week starts again, helping make sure homework is done and not at the last minute, mediating sibling confrontations, mediating father son confrontations when they happen (I think Rupert would call that interfering :)), mediating confrontations over who is going to walk the dogs, organise what we will do in school holidays and half terms. And the list goes on. When I look at it I can see that if I took me out of the equation the world would not stop and that Rupert is perfectly able to (and frequently does) much of the above. It is just that we share it and there are always invisible tasks that one partner does that the other is barely aware of, or is very happy not to be engaged in (emptying bins, sorting out car insurance for me). The boys have already started to take on more responsibilities. This is partly through need as I am not quite the whirlwind I was and partly as we prepare them for life. Most recently we have been teaching Will how to use the washing machine independently (and that includes basic instructions about not mixing colours and whites). And so on. 

I plan to write a list of things I need to have prepared. And this includes writing a logisitics list where I download the various domestic details that I am almost certain only I know. What does the E7 error code on the washing machine mean and how do you resolve it? Where did I pack the winter hats and gloves? I also need to list all my various user names and passwords for the numerous services I use and devices I have. Net flicks, itunes, gmail, easy jet … Transferring bills that are only in my name to Rupert’s so we don’t get stuck in that rut whereby you are told they can only deal with me unless I have given them permission for Rupert to talk to them. All of this could be done by power of attorney but easier at this point to just move them earlier than later. 

After the logisitcs there are the messages and memories I leave. Who gets the chance to polish their legacy! Rather than dying old and doddery, when my kids roll their eyes frequently and say ‘just ignore her’, I intend to leave lessons for life which will take on great meaning and hopefully actually be helpful in guiding them in someway, or at least giving them comfort. I have also thought of leaving some podcasts (for want of a better way to describe them). But I first need to work out how to do this and be in the right frame of mind. I would like to write something to the so many people, family and friends, who I love and maybe leave them something that will remind them of happy times. And if that list isn’t enough I still have ambitions to type up my old diaries and even get on to writing something more substantial for the kids and Rupert. In between all of this I need to cram in lots of lovely moments doing either what I love or what I have always meant to do.

I know this may seem dramatic but I feel as if the last few weeks have been a period of transition. I am reaching some level of acceptance and realise what an amazing opportunity I have to manage my departure and in doing so hopefully make it less terrible for everyone. The grieving process for many, including myself and Rupert, began when I was diagnosed last January. I threw myself into investigating ways to cheat death. I have had a bump which has reminded me that cancer is a clever bastard and I may well not be able to do that, but I am determined as hell to carry on trying.

The sun coming out feels symbolic. It is so much easier to feel the beauty of life when the birds are tweeting, the wood pidgeon cooing, the wind blowing warm and gentle and the blossom bursting. Knowing that all of that will still exist when we are all gone. 

I have a lovely summer planned which I am determined to be able to enjoy. Part of my fear is that I may not even enjoy this if I have to change treatment again. I am not enjoying the xeloda (the chemo pill) - it makes me tired and burns the palms of my hands and feet. I am on my third two week stint now with a scan later this month to see how things are going. My bloods have been going in the right direction but I still feel my liver hard and uncomfortable so am not convinced that it is exactly dissolving the tumors - even if it manages to keep it stable for a while. So I am on the road again to investigate what other options are out there. 

I am writing this from the Hallweg Clinic near Stuttgart. It is a private oncology clinic which appears to be using a range of new approaches. I am only here for one day, for a face to face consultation. I just want to know what they would suggest if I were their patient. It may be that there is nothing else, or that I cannot access it, or that I do and it does not work, but I am determined to work out what the cutting edge centres in the world would offer. The treatments for cancer are opening up. I can’t sit and have ancient therapy when there are new, less toxic, approaches being developed. I still may miss the boat, but truly believe they are getting closer and closer to cancer being a chronic disease which they have to actively manage to stay ahead of the game. I may never get rid of it, but imagine if I could find a treatment that bought me some more time, giving time for another option to become available and so on - until (she wishes big) perhaps some of these may actually be available for patients in the UK. 

I caught a plane from Gatwick this morning, easy jet to Stuttgart. It was so straight forward and we landed 20 minutes early. I had only hand luggage and was almost first through immigration. The sun here is shining too and this area of Germany is beautiful. The Hallweg sent a car to pick me up (eye wateringly expensive but for a day trip and my first trip it is the easiest choice) and a smiley old guy was waiting for me. The first song that came on the radio was ‘Don’t worry, be happy’. I looked out the window at the sky and the occasional cloud and decided this was a sign. The words to the song are great …

"Don't Worry, Be Happy"

Here's a little song I wrote

You might want to sing it note for note

Don't worry, be happy

In every life we have some trouble

When you worry you make it double

Don't worry, be happy

…….when you worry your face will frown

And that will bring everybody down

So don't worry, be happy

Don't worry, be happy now

I am not sure I have ever been driven so fast in my life. At one point we were driving at 180 KM/H. I once thought - wouldn’t it be easier to just die in a catastrophic car crash now. Then I thought no! I am not ready - I have just spent the past few days working through what I want to get ready so that I feel more at peace with the whole situation. Another sign. I have a choice as to how I deal with this. My maternal instinct kicks in and making whatever time I have left calm and loving and happy is really important to me as are getting all the above in order. In the same breath I will equally, maternal instinct also, fight as hard as I possibly can to keep one step ahead of the cancer. To do this I need a level of acceptance, which for the moment, I think I am reaching. So planning a dignified peaceful exit while at the same time running as fast as I can to keep ahead of the game to avoid this exit completely. 

I have been continuing my meditation training using the Headspace app. Ten minutes a day, so not very impressive, but everyday so I hope I am absorbing some headspace behaviours and will automatically use them throughout the day and especially to help when the fear comes knocking. I have also finally put up the infra red sauna that I bought. It has been in boxes for about 3 weeks. Actually it is not entirely true that I put it up. I asked a friend (a new friend I have made through cancer is pants who has his own sauna at home) if he might be able to help me. It turns out he has a far infra red sauna and mine is a near infra red sauna so mine is totally different to his. It looks like a tent. It has a simple pine frame and a big canvas that goes over it and three big bulbs in a heating unit which hangs inside the tent. Not at all what I expected. So glad to have it up now as it is another approach I can use in my stay strong plan. (I have added some information about infrared saunas and their benefits below). The only place we could fit it was in Ella’s room so when she gets back from University she will find her room is now dominated by this canvas tent contraption. 

Note - Not a picture of me! And mine did not come with comfy pine floor and chair

On the cannabis oil front, I tried to increase my dose but it just makes me so sleepy and while I am sure sleeping is very healing, when you have children and things to do it is pretty debilitating wanting to sleep all the time. So I have reduced the amount I started taking (which wasn’t that much in the first place) and am looking into a CBD only variety to take in the day and the CBD/THC mix at night. The night dose certainly makes me sleep heavily and I can feel a bit whoozy in the morning. I am not anywhere near the Rick Simpson dose and so am not technically doing the protocol properly. I am not sure whether to or not given that it will mean I will be almost unable to function for a good few weeks. I am also not too sure how powerful it is. If you search and search for success stories on the net you realise you keep coming back to the same group of people with their stories regurgitated on lots of different forum. I would love to hear from people who have used this protocol successfully because at the moment I am not sure if I should throw myself into it properly. 

Work has been a major issue. I continue to work but recognise that I simply cannot fit in what I need and want to do in the coming weeks and months and that the reality of treatment and my disease is that it is so unpredictable. If my time is limited then I have so much I need to fit in and working the amount of time I do at the moment makes it very difficult. The trains to London are so frustrating and on a bad day it can take 5 hours door to door and back - that is a lot of hours in a day and makes you exhausted. Changing my work status and pattern is really hard to contemplate as it simply adds to the wholesale life transformation this disease is instigating. Perhaps this is what I need though and through making more space in my week I can achieve those goals I have as well as being able to have the time to implement some of the lifestyle changes I need to support me - including more time for exercise. I am midst negotiations to see what balance will work. I have worked with my organisation for almost 12 years and love the people - I actually can’t imagine them or the work not being part of my day to day life. They have been incredibly supportive and I have an interim plan to continue but to not travel to London as often and to keep an eye on things so if I need to change things I can do so at any point. Of course were I to miraculously find a treatment that worked for a good period I may have a long period of stability or remission but I will never know how long such a period will be (or if and when I might get one) so I need to be flexible. 

It is Brighton Festival time. Every year I do not take advantage of living surrounded by so many cultural, musical and artistic performances and events as I find I am too busy and assume I will do it some other year. Not this time. I am planning a whole day to go around some of the open houses. My usual open house experience is randomly walking past a building and seeing an open house sign and deciding on the spot to have a quick look - rather than planning a deliberate route so that I can take advantage of many of these annual displays. 

I wrote this couple of weeks ago now - and have since changed my treatment plans having spoken to an amazing woman who helps people ‘navigate the cancer maze’. This is after someone who reads my blog from Australia contacted me after reading about my wobble - and I am incredibly grateful to her for doing so. It shows what a global world we are in - information is power and in my game you need to be queen of information and any help from all corners of the globe is so very welcome. More on this in my next post. 

http://uk-saunas.co.uk/ 

A Wobble

The last few weeks have been a bit all over the place. I went to Germany in March as scheduled. In the couple of weeks before the trip I had noticed discomfort in my abdomen. Something was growing and affecting my diaphragm which meant taking a deep breath became hard. Much of the hardness and swelling was just below my sternum and to the left of my abdomen. As liver pain is usually described as being on your right side with pain under your rib I was confused and thought maybe it was my stomach. I had just started the Budwig protocol so that would explain my stomach being a bit out of sorts as it got used to it. My skin continued to be dry and prickly. By the time I got to Germany the swelling and hardness was really obvious. Of course it was my liver - why I considered it could be anything else I simply don’t know. Delusion? It was the first time I had seen Dr Martin not look very positive - and that made me very scared. He gave me an ultrasound which simply confirmed it was my liver. The left lobe in particular which explained the swelling on my left. I had my bloods taken and went back to the hotel with my cousin Tim who was accompanying me and lay in the bed in paroxisms of fear. The physical discomfort meant that it was almost impossible to think of anything else and the shock that it had grown so fast was significant. I cried a lot and could barely move from the bed covers for hours. After everything I had been doing it was so unfair.

The next day we went back to the clinic to get the blood results, which while one of the liver markers had risen significantly the other liver markers were still around the normal mark and my other bloods were looking ok. This news offered a little relief, but not much. I have therefore changed my treatment and this now includes a chemotherapy drug called xelodawhich is taken in pill form. This is where chemotherapy has an advantage over other approaches, it can work faster to reduce tumor bulk if it is life threatening. Still attacking from multiple sides is my approach but this multi method approach now includes a chemotherapy pill. 

My oncologist here is now prescribing this and for that treatment I am back within the conventional therapies. I am not happy about this but really do not feel I had any choice. I have now been on xeldoa for 2 weeks(I do 2 weeks on one week off) and am on my week off now. It has all sorts of side effects - for me themain ones have been fatigue, feeling constantly tired and what is called palmar plantar - hand and foot syndrome where small amounts of the medicine leak into the hands and feet making them super dry and sensitive. My old school friends clubbed together to buy me some ugg boots last year when I started chemo and I am now wearing this almost exclusively to protect my feet. This very unfortunate side effect has many implications. Running may not be possible. Gardening - which I had plans to do more of (I am a hopeless gardener but intended to become better) will be very difficult and may not be possible if I do not keep my hands in a reasonable state. Even my knitting (also a slow affair) is more tricky. This is a chemo that some women do well on for quite a while. I had a chemo sensitivity test last year and it identified this chemo as one I should respond to. But I feel so unsure of anything at the moment. I had thrown myself into all the good advice and different approaches and here I am starting chemo. The good news (in a bad good news sort of way) is that the scan I had 3 weeks ago did not show any spread anywhere else. I would like to think that my diet and supplements have helped to make it difficult for the cancer to settle anywhere else. 

I still feel my liver, hard and swollen but I can breath normally and it is not quite as large as it was 3 weeks ago so I am hoping that this is because I am responding to the various treatments. I realise that I should be more circumspect about exactly what I am doing so if anyone would like to know more detail please do contact me personally. I am not sure at this point I am a poster girl for alternative treatments except that who knows what would have happened if I had not invested as I have in these. 

So often I have read emotional outbursts from people with advanced cancer. Why me? Focusing on what cancer has taken away and I was determined that that would not be me. But I would not be human if I was left unscathed and managed to Pollyanna my way through this journey the whole time. I have an emotional outburst simmering. Hope can take you so far and this setback has extinguished some of that hope. It has kicked me into getting my affairs in order - as they say. Not so much the administrative stuff but the letters to friends and family I would like to write in the event I do not beat this. I woke up during the night in Germany, before getting the blood results, in a panic as I had not written any of these. The speed at which the liver swelled up really shook me. Could it really happen so quickly? 

I hope I can get back to a safe position and then have an extended period of stability - but I have only recently started new treatments so I need to wait a bit before I know if this is going to happen. I frequently read conversations on the website Inspire for Advanced Breast Cancer and it seems thatmoments of crisis are part and parcel of the process. There is a limit to how many crisis you can have I presume but I am hoping this is simply a crisis moment which I need to come back from the edge, pull myself together and carry on. Stay calm and carry on. 

So now I am considering what my next move should be if and when we get back into a safer holding pattern. I am interested in the clinics in Mexico and am trying to work out if it is worth me planning to visit one of these and if so which one. I am looking into Rigvir (a licensed virololgy registered in Latvia but which has had some good results and almost no side effects). I am considering the full Rick Simpson protocol. I am still on budwig but it is so confusing. Can I take it now I am on a chemotherapy? Purists I am sure would say it goes against the protocol but I have read testimonials of people who have taken it with a chemotherapy and claim it has helped them with side effects. I also cannot stick 100% to the diet that is meant to go with budwig - the most difficult bit is not using oils - including olive oil or eating food cooked with oil. I frequently eat out when I am not at home and it is impossible to adhere to this. Then there is the melatonin I take at night. This is an antioxidant and you are meant to stop all antioxidants when you are on it. But many others swear by the beneficial impact of melatonin. So I am all in a bit of a muddle and not quite sure what mix of approaches I pursue in light of my current situation. But I know I need to have a plan ready for when (note the word when) my liver settles down and I am out of crisis mode. 

I have found it hard to write this blog. I so wanted to be the one who was an example of overcoming the odds. My character has always been optimistic, happy, excited about life and I feel so dragged down. It is as if I have lost me, what made me me. Louise without excitement for life is a shadow of me. And the prospect of being on the ladder of conventional treatments is abhorrent. At least xeloda is a pill chemo so I am not tied to the hospital - but if I need another chemo in the future I think only intravenous versions are what are left - and that makes me want to crumple.

I liked that I was facing this disease down. Admitting that I am struggling is very hard. I am hating that I feel tired on the chemo as this impactswhat I can do to distract myself. I have been working on a salvage mission to pull myself back onto the front foot. I went on such a lovely family holiday with my parents, sisters and brother and the 15 children we have between us. Since then I have been to visit my brother and I am now going to spend a couple of days in Oxford with Rupert who is there for work. Bucket lists were always something I thought to avoid as it suggested acceptance that the end was nigh but I am revisiting this and have decided I had better get busy and fill my time with fun and distracting things to do. Spend more time with friends. Go to museums. I am determined to do some gardening, sore hands or not. I also want Rupert and I to book a few weekends away. 

I also need to fit in writing my goodbye letters. I would like to never need these but I think what the recent dip has shown me is that cancer is a clever bastard and I am not really that special. It will get me in the end. Probably. And it is that probably that I still hang some hope on. Might the new treatments from scientific discoveries come fast enough to just keep me goingand I be one of a new generation of people for which it is a chronic long term condition or perhaps I will have success with the Rick Simpson protocol, Rigvir or time at a Mexican clinic. I had been so hopeful about budwig. This does take months to show benefit but given I have started chemo and am finding it hard to stick to it 100% I am not sure I will get that benefit and really need to talk to someone who knows more about it. Many of the alternative cancer approaches are so viciously anti chemo and seem to say, if you have had chemo then these approaches might not work. I have though seen stories of heavily treated people having success with cannabis oil for example and it is these that I now focus on.

Ned, who is a deep thinker and likes to talk joined me in bed the other day for a talk. He was calculating how old I would be when he is my age. Moments of torture. 

I continue to go through my old diaries and papers. I loved inspirational quotes which I collected as a teenager and young adult - I am going to share some of these - the first is particularly pertinent. 

The sun is coming out and this will I know breath new life and new hope into me. If only the temperature would rise as I simply cannot manage the cold anymore. I am still wearing thermal vests! Next time I blog I hope the feisty unaccepting Louise will be back. This is a minor blip. As Ella would say ‘did you think this would be easy?’. 

Quotes

The Clock of Life

The clock of life is wound but once.

And no man has the power

To tell just when the hands will stop, at late or early hour.

Now is the only time that you own.

Live, love, toil with a will.

Place no faith in tomorrow.

For the clock may then be still. 

Robert H Smith

How selfhood begins with the walking away

And love is proved in the letting go

Cecil Day Lewis

Tread softly for you tread on my dreams

Yates

I would not have been given the power to dream

Had I not been given the time to make those dreams come true

For we which now behold these present days

Have eyes to wonder but lack the tongues to praise

Shakespeare

To meet hate with retaliatory hate would do nothing but intensify the existence of evil in the universe. Hate begets hate, violence begets violence, toughness begets a greater toughness. We must meet the forces of hate with the power of love; we must meet physical force with soul force. Our aim must never be to defeat or humiliate the white man but to win his friendship and understanding.

Martin Luther King 

…whose mother is history,

rival of time, storehouse of great deeds,

witness of the past, example and lesson to the present,

warning to the future.

Don Quixote, Cervantes

Whilst the quest for greater equality has much vocal support, the resistance to that question appears intrinsic to the modern world for affluence is not readily given up, excessive profits are not meekly abandoned and power is not voluntarily relinquished. 

Broweet 1950

Envy isa worm that grows and consumes the entrails of the envious. Inca saying

The pleasures of Friendship

The pleasures of friendship are exquiste

How pleasant to go to a friend on a visit!

I go to my friend, we walk on the grass,

And the hours and minutes like minutes pass

Stevie Smith

April 25th

Since my wobble I have scrambled my way back to feeling more determined and positive. I remain conflicted however. The future I would like involves living and creating the circumstances that give my body and mind the best chance of doing this for a long long time. Preparing in case this does not happen, involves getting certain things in order. When I focus on this I wonder if I am somehow giving in to what most would consider the inevitable in my situation. But acting as if I have a never ending future is deeply unsettling. What if I were to dramatically decline and no longer had the strength or time to finish those things I would like to complete before I go? But does a focus on preparing for the end somehow hasten it. The power of the mind is incredible and there is much evidence of physical responses to the power of the mind. Patients who feistily confront a diagnosis and are determined to out do it live longer on average than those who passively accept a prognosis according to research. Is getting my affairs in order passively accepting in some way? Outwardly I am being feisty in my drive to outwit the cancer while contradicting this non acceptance of my prognosis by preparing things just in case. Surely my body will know I am not completely convinced I can outwit it and might this prevent the healing I need? All these things going round and round in my head then unsettle my brain which counteract the many actions I am taking to heal. 

After 4 weeks on my new mix of treatments including xeloda my liver bloods look as if they are coming down. I can still feel my liver but it is not as swollen as it was and I am feeling more normal again. The first 3 weeks of treatment were horrible and I felt exhausted and wobbly. But now I am coping better and apart from my hands and feet which have started to slowly disintegrate with the xeloda. My ugg boots turned out to aggravate not improve the situation as my feet moved around in the boots causing friction sores which I am now trying to resolve. This involved hobbling to the nearest shoe shop and buying some delicious fluorescent pink trainers. These at least keep my feet in the same place and I can now walk again with some discomfort.I do not feel tired like I did a couple of weeks ago and I wonder if part of my exhaustion was getting used to the new treatments and the emotional shock of having my liver deteriorate so suddenly. 

I recently met a fellow advanced cancer patient who contacted me via cancerispants and we shared strategies and ideas and he helped reinvigorate my efforts. I have ditched the budwig which I simply hated. It took ages to make. It tasted pretty disgusting and if I travelled anywhere I had to carry with me all the ingredients and equipment (hand blender, coffee grinder, kefir or cottage cheese). I did feel very positive about it but in practice it simply depressed me. Twice a day having to find the time to make and then eat this disgusting gloop. Then there were all the various dos and don’ts which I could not keep up with. The main one was no antioxidants which had meant I had stopped anumber of my supplements. Maybe one day I will revisit it but for the moment I am relieved to be off it. I have restarted a supporting plan involving high dose vit c, exercise and other ways of getting oxygen into my body. My diet remains the same but I have allowed myself a few things I had totally excluded. I was simply not enjoying my food and this was making me miserable - and being miserable is not the way to heal the body. So it is mainly plant based still, with at least a pint of juice a day, no sugar etc, but I have had some goats cheese and butter and the rare portion of chips (shock, horror). So delicious. I never realised how much I liked chips until I totally excluded them from my diet. I have restarted attempts to meditate. I downloaded an app called Headspace which I have started with and feel pretty good about. I may just crack it. 

Despite my long term goal of a long life cannot rid myself of a feeling of time ticking away. I am mobile and able to be relatively independent. I can travel. But the shock of the last month has exacerbated the sense of an hour glass - although I don’t know when it will run out. At least for the moment I can do things and therefore I must as I cannot afford to wait in case that time runs out. I have a great friend in Edinburgh who, for various reasons I have not seen for years. I keep up with her on facebook but have not managed to see her. If I do not soon will I ever. I have been identifying those things I really want to do. 

Mainly I want to type up my old diaries. I have started this. It is a slow process, but so fun. It is like meeting my younger self again. In 1991 I was studying Geography at Cambridge University. I went to Mexico to undertake research for my third year dissertation the subject of which was Family Planning and the Role of the Catholic Church. I have been a Catholic for Free Choice for all my grown life and my interest in reproductive health stemmed in good part from the contradiction, as I saw it, in the Catholic Churches teachings on birth control and contraception (remember that in 1991 there were no antiretrovirals and HIV was a death sentence as was an unplanned pregnancy for many). In Mexico at that time there were a number of church run family planning centres which taught ‘natural’ birth control which, to be honest, can be very effective indeed assuming you are in a loving and trusting relationship, you have a good diet, control over your body etc etc. Even then human error contributes to many unplanned pregnancies. I was fascinated to find out more about how the Church engaged with this issue in practice in a country which at that time had the largest city in the world and in it a population of which almost 50% were under 20. I will share a small excerpt from my then diary..I am talking about what experience I had to build on.

What I have in my favour is that I am female (!) and I was at a Catholic girls school from the age of 9. In the sixth form, (and not before) we had an hour session on all types of birth control methods and 2-3 sessions on Natural Birth Control. We were given ‘fertility thermometers’ and graphs and encouraged to get to know our own cycle. Each morning before getting out of bed we should take our temperature andmark it on the graph, from which we would eventually be able to identify when ovulation took placed. By Sixth Form I had certainly had more education than millions world wide and I still forgot to take my temperature. I would jump out of bed to get to a lesson, clean my teeth then remember I should have taken my temperature, so I would jump back into bed, lie there for 5 minutes in the hopes my temperature would return to what it had been when I woke up, then I’d mark it down. My Fertility Graph over the 28 days was quite unrecognisable.

My point was that this approach was simply impractical for millions of women and not a strategy for reproductive choice. 

I am early on in the diary but am so grateful that I wrote them. Memories that I simply would have lost. Reading them is like meeting an old friend again. I am sometimes embarrassed by what I write and found myself, while typing it up wanting to doctor what I had then written. My mature self embarrassed by my younger self. But I have set myself some clear boundaries - I must type it up as is, warts and all.

Budwig in the bath, old photos and 1985

It is three weeks now since I started the Budwig protocol. What has it been like? Well, as I have stage IV cancer I am having between 5 and 6 spoons of flaxoil, mixed with either cottage cheese (organic) or kefir. I take it in turns. The cottage cheese really is the best base but I find it really hard to eat so taking it in turns with kefir on alternate days makes it more bearable. I mix it with pear and nuts, or apple and nuts with crushed flaxseeds. I have noticed a couple of things. First, and most significant has been the impact it has had on my energy levels. Just days after starting it I began feeling far more myself than I have for a long time. The week after I started I went to work in London twice and drove Tom to visit Exeter University, spent the night and day there and drove back again and felt totally fine. This is amazing as not long before I simply would have got too tired. This may simply be that my body has been craving more fat and this diet introduces that, but it is consistent with other testimonials which frequently indicate a physical impact even soon after starting the diet. It does take at least 3 months for tumours to respond usually, sometimes longer (for people likeme who have had chemotherapy). I have a slightly obsessive habit of reading budwig testimonials. I read them in the bath and before I go to sleep. On the train. When I wake up. Anytime I begin to feel doubtful or fearful and they cheer me up. If it works for all these people surely it will work for me? Together with dendritic cell - how can the cancer survive. 

I have learnt a few things. Mainly not to balance a bowl of budwig mix on the side of the bath. Earlier this week I did this and it slipped in. The bath had only just run and was lovely and warm so I just stayed in it surrounded by cottage cheese with oil and the odd nut floating here and there. I have also learnt that it is quite difficult to eat all that mix and have space for anything else. So now I am slightly worried I will miss out on other vitamins and minerals as I am not eating much of anything else. I try at the very least to have one raw dish a day and some days all I have is my two bowls of budwig and a salad bowl (and of course my juices). You should not have antioxidant supplements on the diet as it cancels out the effect of the mix so I have stopped a good number of my supplements and am continuing only with chlorella, a mushroom supplement, curcurmin, milk thistle, metformin, aspirin, cimitedine and vitamin d. I have also started avemar again. I found this really helpful during chemotherapy. In the morning and evening, on an empty stomach I have essiac tea and sauerkraut and in the evening I take some CBD/THC oil (just a few drops not the full cannabis oil protocol) and melatonin. I am a bit confused about what to do with melatonin as I understand this is an antioxidant so I am wondering if I ought to give this up - but there is so much about it as a good therapy for breast cancer particularly. 

Metformin is an old drug which has been used for diabetics for years. In the integrative health world it is well recognised as being a good anti cancer drug. It is an inexpensive drug most commonly prescribed for type 2 diabetes. It seems to affect multiple key processes related to cell growth, proliferation and survival. It decreases the amount of glucose produced by the liver and reduces the bloodstream level and cellular uptake of insulin. It does more than this but for many this knowledge has been available for quite a while but our good old NHS couldn't possibly prescribe this cheap drug to someone with advanced cancer as it is not registered as an anti cancer drug, so I had to buy mine first by internet from an Indian pharmacy (which a cancer colleague of mine advised was the most reliable). More recently Dr Martin was very happy to prescribe it and did not even question why I would want to take it. I was walking in London this week and passed a newsagents. I ran my eyes across the front pages of the various news papers and the front page of the Express read ‘Diabetes pill beats cancer….and costs just 2p a day’

‘New research suggests it can slash the risk of developing liver cancer by an astonishing78%, breast cancer by a third, pancreatic cancer by 46% and bowel cancer by nearly a quarter. 

The discovery raises the possibility that the drug metformin could be a potent weapon in the battle to find a cure for cancer. Scientists think the drug could prove to be cancer’s Achilles heel.

It works by reducing the amount of glucose - which feeds cancer cells - being produced. It helps cells mop up sugar circulating in the bloodstream cutting off cancer’s energy supply’

The study was undertaken by researchers from the Department of Epidemiology and Health Statistics at Shandong University in China who analysed 37 studies involving more than 1.5 million people.  

It amazes me how long it takes to get promising treatments into use. The Chinese who published this study didn't actually DO research on actual people they studied existing studies. This means that the evidence already existed - yes it is helpful that they have now collated it - and come to the conclusion that many already had reached - that it is a useful drug in the cancer arsenal. I wonder how long it will take to dribble into everyday practice. I am not sure I really have the time to wait for that day so as with many of my other approaches I take my health care into my own hands for the moment. 

What has been so wonderful about feeling more normal is that I don't think about the cancer so much. I think I honestly believe that with budwig and immunotherapy I am going to be able to keep it under control, hopefully for a very long time. I would dearly love to be a walking talking example of taking stage iv cancer by the balls and manage it, living as normal a life a possible. I am not in pain. In fact I feel rather a fraud at the moment. I had a eye appointment recently and they went through a basic check list - was I on any medications etc etc. How was my overall health? I didn't think I could face telling the very nice optician that I had stage iv cancer - the pain on people faces - a sort of contorted mix of pain, shock and sympathy - is just too horrible - it is much easier to just say I am perfectly well. It most definitely shuts down conversations almost immediately and I just want to be normal. 

It feels more normal to go into work now and I am back in a more day to day work pattern and my work colleagues and friends, while being very loving, just get on with things and what might have been a rather dreary meeting in the past is suddenly refreshing for its normality. It is as if I have removed a mask and am experiencing the normal with a kind a excitement simply because I can experience it. When I was first diagnosed I was so certain that was the end of any normal life. I’d like to think I am a better mother because of it. When Ned starts some verbal diaorrhea about something that happened at school, rather than grunt as I try and carry on reading or concentrating on a task - only reallyhalf listening and making that noise that reminds me of my mother and how frustrated I would get when I tried to tell her something but knew she was distracted - I now stop what I am doing and drink in whatever it is he has to say. There is nothing like a possible deadline to focus the mind. 

My next trip to Germany is next week and this time I am going with my cousin Tim who I have been very close with all my life. We used to spend so much time together, we travelled in India together after we finished school, before university (I have added some photos of us at that time). My Aunt Jo who died of ovarian cancer in 2014 was his Mum. While the reason for going to Germany is not brilliant it is a treat to spend time with people I love. He has children and a job and we simply don't see each other as much as we might like - so I am happy he will be coming with me. I leave on Wednesday and will have my bloods taken on Thursday. Any test makes me a bit jittery, I have been feeling so good I cant believe the results will be bad, but it is always an unknown. I do trust in how I feel but the liver can be quite damaged before you get symptoms. I have had incredibly dry skin all over, which was one of my first symptoms when I was diagnosed last year - so that makes me a bit nervous. It could have a simple explanation - the cold? too many hot baths? lack of oestrogen? We will see.

I have been working through my diaries and photos slowly. Last week I pulled out one of many bags of photos from the days when developing photos was the only way to see them. How I miss those days. My more recent photos are very badly filed and I reallyhave no idea how to efficiently organise them. Why do we insist on taking 4 or 5 of the same exact scene. Because we can! So I have multiples of far too many photos. Rationalising is an effort - it requires either just blindly deleting 4 of the 5 or as I tend to do it, spending far too long looking at each of the almost exact same 5 photos trying to decide which one is best. This is a hopelessly slow way of organising photos. Last week I joyfully organised actual hard copy photos. These were all from the year before Rupert and I married. I won a scholarship to Harvard the year we met and so soon after getting engaged I moved to Boston and Rupert came to visit a few times. I arrived home in the summer of 1995 and we married in September 1995. I was pregnant with Ella about a month later. We also travelled to Spain a couple of times on long weekends away. Luckily we did all of that as once I was pregnant with Ella, the other 3 came in relatively quick succession and Rupert and I can count on two hands the times we have been away and alone together since. I filled 3 photo albums and got used to looking at pictures of the young me. I didn't really even think - goodness I look young - to me I just looked like me. I remember looking like that, I just felt as if I was looking at me. Then I went to the bathroom to go to the loo and caught myself in the mirror. What a shock I got! I must have simply become so absorbed in these photos that I adjusted my self image and then when I saw myself with my curly short brown hair, glasses and lined face I took a sudden step back in shock. How does time pass so fast? I don’t feel any older really. Physically yes, but not in my head. 

I then worked my way through my 1985 diary. I was 14. The diary is very small with a tiny space per day. At that time I lived in Barton Stacey on an army camp near Winchester. That year we moved to Rhinedalen in Germany (another military camp). The diary describes my rather violent swings from being deleriously happy about life and feeling lucky to misery and depression linked to friendships and self esteem. I was unhappy about the prospect of moving to Germany, but when I did I ended up enjoying my time there. The films released in 1985 (that I saw) included an Officer and a Gentleman, Greystoke, Desperately Seeking Susan and Weird Science. On one weekend I went to stay with a friend and we watched Breathless - and 18 - and I remark that it ‘was OK but only had 40 seconds of sex’!

1985 was the year I had the operation to remove the cyst in my left breast which I still believe had a role to play in my later cancer. 

‘Went into Heatherwood Hospital ward 1. Full of mostly geriatrics. The one next to me sounds like she might die in the night’ 

‘Had operation. 7 people visited me at once. Mum bought grapes and apples and crisps’

‘Feel really whoozey. I’m just walking around like a zombie saying the right things’

Having moved to Germany I complain about having to share with my younger sister ‘again!’. I note the day to day goings on interspersed with observations about the wildlife…’15 year old boy lives down the road. Will meet him. Bet he is the biggest JERK alive’

I note the date of my first period. For information it was April 16th 1985 aged 14. I was pretty late compared to my friends at school and remember when finally it came. These days perhaps I wouldhave announced it somehow via social media - (privately to my friends of course) but then we had to rely on the telephone stuck to the wall in the hall which cost loads to use if you were calling England. 

1985 was the year I did my Duke of Edinburgh - it ‘rained badly on night of practice expedition, slept little and then took wrong turn and ended up walking an extra 20 miles - got lost but eventually found our way’.  We failed the first expedition. I didn't write why in my diary but I do remember that the person assessing us was not impressed with the food we took with us (I chose a cucumber among other things and this I was told was not an ideal food for an expedition, heavy and with no calories). We were also criticised for hanging a camera on the outside of the tent. According to our assessor, had it rained the camera would have made the outer tent touch the inner tent and got it all wet. This was bad enough to fail us. I don't think he liked us very much, especially when we tried to defend our actions by claiming (quite sensibly) that had it actually been raining we would not have been so stupid as to hang our camera up outside to get wet. We failed and were the only group who had to repeat the expedition part the Award. When we finally did the expedition again I note in my diary ‘Did final DofE expedition having failed first one. This time - we got lost and cut out massive corner but did not confess - and as we ended up in the right place we passed.’ I also note that we ‘set fire to farts’ outside the tent.

I did two O levels early (I was the last full year of O’levels before GCSEs were introduced) Spanish and RE (we called it Doctrine). I noted that I ‘look like George Michael’ in my school photo.

This was also the year that I had railway tracks fitted. I wore them for about 9 months. I had this uncomfortable contraption I had to wear every night to help pull my teeth back into place. I can vividly remember the pain of wearing this nightly. On October 24th 1985 I had two teeth out. These are the teeth I had forgotten I had out and it was only when I went to the holistic dentist recently that they showed me on the X-ray and pointed out the infection in the jaw where the teeth had been. I wonder how long I had had that infection. It has now been cleaned out - but I wonder if it had been bubbling away on and off since they were originally extracted?

What else? A few other notable events. I passed my canoeing one star (on the Thames). I made blue lavender smelling soap for a chemistry exhibition for a parents day - only to find it had turned pink on the day of the exhibition. I was a general pessimist when it came to school work. Frequently I note in my diaryhow hopelessly I have done in various exams which in the end I do pretty well in. 

In 1985 Boris Becker was only 17 and ceded number 1 at Wimbledon. Apart from that and a comment about a volcano in Colombia that killed about 25,000 which I mention the focus of the rest of the diary is almost entirely self centred. It was, at 14, all about me.

New treatments, coffee (not for drinking), Essiac Tea and the Budwig Protocol

I have decided what being in my situation feels like. It is like being at a party, the best party you can imagine, a children’s party and there is a game of musical chairs. The music has stopped and everyone, but me, has managed to find a chair. All eyes are on me – it is my time to stop playing. But I don’t want to. I am having fun. I am happy. I don’t want to stop playing and I definitely don’t want to leave the party. The silence of the halted music rings in my ears and the anticipated looks of the other invitees all looking and waiting to see if I will leave (as one should do when you fail to sit down fast enough). Will I make a scene? Was it bad luck that I missed the chair? Can I claim some injustice and request we play the music again and redo that round? 

I have to admit to finding the last 3 months (since the scan) really quite hard. I have felt rather lost, occasionally feeling normal but often being overwhelmed with fear or uncertainty. Then worrying that such feelings send bad signals to my cells which will in themselves not help the healing process. Then researching how long people  like me live for, and while there are many stories of people healing, following some of the various natural or non harmful protocols I am also exploring, there are those who go down the conventional route, some of whom live for quite a few years. But their lives involve chemo after chemo, hair loss, nausea, numbness of the hands and feet and ulcers among the other horrid side effects. And the thought of having to do any of that again overwhelms me, as I wonder, will I give in at some point and just decide a few years is better than nothing. Can I achieve a few years, can I achieve full healing – with what I am doing? Or at least for long enough for some less toxic treatment that has remarkable responses to become widely available? 

The recent news stories of yet another success with immunotherapy glints at where we might be going with cancer treatment. Some form of long term approach which has a vaccine like effect – to genetically modify t-cells to manage the cancer themselves. Oh, you can imagine what these stories are for people like me! I want to shout ‘let me try it!’. But the stories always come with the probably sensible caution that there is still a lot to learn and more research is required. But goodness it seems to me that we have a mad system. Why, as advanced cancer patients, do we not get more say about what treatments we have? There may be unknown risks but there are many known risks with the existing treatments. Why can I not take the chance and with it the risks? It would be my decision. Why am I not eligible for immunotherapy treatments in the UK now? There must be thousands of women like me. Are we going to be the last generation subjected to the poison of chemotherapies with our doctors knowing there is no chance they will actually save us. Yet here we have evidence that approaches are being discovered which have had some remarkable responses. Even in this example they seem to have trialed the new approach on people who had only months to live. Do we really have to play such chicken with death before we are eligible forsome of these new approaches? Ravage our bodies and minds with existing treatments, simply because the research has been done and the risks (however horrible) are well documented – making it OK to offer as a treatment. Iwonder how many advanced/terminal cancer patients around the world, like me, simply closed their eyes on reading the promising findings from the recent trials and crossed their fingers and toes so tightly – whispering to themselves – please let me still be alive in time for this to be a treatment I might benefit from. I do know there were some cases of horrible side effects in this trial, but given that current treatments have a very low chance of any significant extension of life, surely the exceptionally high response rate vs the severe risks for a relatively small number is a risk many like me would like to take. 

I have been having regular blood tests after my scan and my liver bloods have been going in the wrong direction. Not too severely at this point but enough to indicate the cancer is active again. My other bloods are pretty good but it is unsettling knowing the liver bloods are a bit dodgy. I have just returned from Germany and had dendritic cell therapy again with a view to reversing this deterioration. Instead of waiting another 3 months I will need to go back in another month and then possibly another until we have the bloods back where we want them. Dendritic cell therapy has similarities with the new research in as much as it is an immunotherapy which relies on harvesting the white cells from the cancer patient. In the case of dendritic cell they develop a vaccine – the dendritic cells are the generals of the immune system and they train the t-cells. But the newly trained T-cells, after each injection, eventually die and are replaced by untrained t-cells which need to be trained themselves if the body cannot manage the cancer itself after the initial training sessions from the immune system generals. 

One of the downsides of having to return so soon and possibly more frequently than I had hoped, is that there is a pretty big price tag per visit and I am eating fast into the generously donated support to cancer is pants. 

If my cancer has become active I need to take more action and have decided to start one of the major natural cancer protocols that exist. For those of you who have not heard of the budgwig protocol, it will sound a bit whacky, but if you do just a little research there is a wealth of supporting evidence and testimonials, very impressive and numerous, of people for whom the budwig diet appears to have reversed the disease process. The protocol was designed by a German biochemist and physicist (Dr Budwig). She was a seven time Noble Prize nominee. She was considered one of the world’s leading authorities on fats and oils. Her research demonstrated the effects that commercially processed fats and oils have in destroying cell membranes and lowering the voltage in the cells of our bodies which then result in chronic and terminal disease. The cells of our body fire electrically. They have a nucleus in the centre of the cell which is positively charged, and the cell membrane, which is the outer lining of the cell, is negatively charged. 

Taken from Cancer Tutor.. Read Morehttp://www.cancertutor.com/budwig/

Dr Budwig discovered that when unsaturated fats have been chemically treated, their unsaturated qualities are destroyed and the field of electrons removed. This Commercial Processing of fats destroys the field of electrons that the cell membranes (60-75 trillion cells) in our bodies must have to fire properly (i.e. function properly).

The fats ability to associate with protein and thereby to achieve water solubility in the fluids of the living body—all this is destroyed. As Dr Budwig put it, “the battery is dead because the electrons in these fats and oils recharge it.” When the electrons are destroyed the fats are no longer active and cannot flow into the capillaries and through the fine capillary networks. This is when circulation problems arise.

Without the proper metabolism of fats in our bodies every vital function and every organ is affected. This includes the generation of new life and new cells. Our bodies produce over 500 million new cells daily. Dr Budwig points out that in growing new cells, there is a dipolarity between the electrically positive nucleus and the electrically negative cell membrane with it’s high unsaturated fatty acids. During cell division the cell and new daughter cell must contain enough electron rich fatty acids in the cells surface area to divide off completely from the old cell. When this process is interrupted the body begins to die. In essence, these commercially processed fats and oils are shutting down the electrical field of the cells allowing chronic and terminal diseases to take hold of our bodies.

A very good example would be tumors. Dr Budwig noted that “The formation of tumors usually happens as follows. In those body areas which normally host many growth processes, such as in the skin and membranes, the glandular organs, for example, the liver and pancreas or the glands in the stomach and intestinal tract—it is here that the growth processes are brought to a stand still. Because the dipolarity is missing, due to the lack of electron rich highly unsaturated fat, the course of growth is disturbed—the surface-active fats are not present; the substance becomes inactive before the maturing and shedding process of the cells ever takes place, which results in the formation of tumors.”

She established that this can be reversed by providing the simple foods, cottage cheese and flax seed oil, which revises the stagnated growth processes. This naturally causes the tumor or tumors present to dissolve and the whole range of symptoms which indicate a “dead battery are cured.” Dr Budwig did not believe in the use of growth-inhibiting treatments such as chemotherapy or radiation. She was quoted as saying “I flat declare that the usual hospital treatments today, in a case of tumorous growth, most certainly leads to worsening of the disease or a speedier death, and in healthy people, quickly causes cancer.”

Dr Budwig discovered that when she combined Flaxseed oil, with its powerful healing nature of essential electron-rich unsaturated fats, and cottage cheese, which is rich in sulfur protein, the chemical reaction produced makes the oil water soluble and easily absorbed into the cell membrane.

In practice this means starting a diet which includes the daily consumption of a mix of low fat organic cottage cheese and flaxoil plus ground flaxseeds. There is more to it but essentially this is the heart of the protocol. As I am an extreme case, with cancer in a major organ, the amount of the mixture recommended daily is very high. I have spent ages scouring the internet and despite a few dismissive posts there is far more supporting this diet for people with advanced cancers. There are many testimonials, too many to have been made up, from people for whom this diet reversed their condition or at the very least vastly improved the well being of the affected person. It is low cost, and no one is going to become rich if cancer patients adopt this as a supporting protocol. The worst that can happen from my perspective is that it does nothing and I have to endure the not particularly nice taste of this mixture.

I spent quite a few hours while in Germany this time reviewing testimonials from cancer patients and integrative health practitioners who have used this as part of their support to patients. With indications that the cancer is getting busy again I have to be proactive and so in addition to my existing efforts (juicing, supplements, diet and of course dendritic cell) I have started (as of today) the budwig protocol. This is a long term strategy and really needs to be followed over the long term (I would like there to be a long term so I am not complaining). I just need to work out the logistics to make sure I always have the ingredients I need to hand. At home in Brighton this is quite straightforward but if I go anywhere, even London for the day, I have to work out how to accommodate this diet and have the ingredients to hand as often as necessary. I cannot say I find the mixture very delicious but it there is even a small chance that it makes the difference it is worth it (I sound very martyr like – the reality involves a good deal of moaning and groaning as I try and eat it down, a bit like with some of my less appetising juices).

Renne Caisse 

Essiac Tea. This is another protocol that I have started. The story behind it involves a nurse in Canada called Caisse (essiac is Caisse backwards). It really is worth reading more about this. Rene Caisse, a nurse in Toronto discovered, from an elderly patient she was looking after, a formula of herbs which this patient claimed to have used, advised by an American Indian, many years previously and which had cured her of her breast cancer. Rene Caisse spent many years investigating this further and ultimately using it to treat patients, many of whom were sent to her by doctors who had run out of conventional options - her reputation was so great. The story is one of persecution and resistance by the mainstream medical authorities paralleled with many from this field persuaded of the contribution of this therapy in cases where all other efforts had floundered. The therapy is basically a tea with four main ingredients; sheep sorrel, burdock root, slippery elm bark and turkey rhubarb. I boil it up as per the instructions and take the stated amount twice a day on an empty stomach in the morning and last thing at night. This site has good information about the tea and some extracts from Rene Caisse herself.  http://www.healthfreedom.info/Herbs%20for%20Essiac.htm

Rebounding – (basically jumping up and down on a small trampoline) is often used by people working to heal themselves naturally, as it stimulates the lymph system. I was given a miniature trampoline for Christmas and try and keep up with this. Here are some of the benefits of rebounding taken from http://wellnessmama.com/13915/rebounding-benefits/

Benefits of Rebounding

• Boosts lymphatic drainage and immune function
• Great for skeletal system and increasing bone mass
• Helps improve digestion
• More than twice as effective as running without the extra stress on the ankles and knees
• Increases endurance on a cellular level by stimulating mitochondrial production (these are responsible for cell energy)
• Helps improve balance by stimulating the vestibule in the middle ear
• Helps improve the effects of other exercise- one study found that those who rebounded for 30 seconds between weight lifting sets saw 25% more improvement after 12 weeks than those who did not.
• Rebounding helps circulate oxygen throughout the body to increase energy.
• Rebounding in a whole body exercise that improves muscle tone throughout the body.
• Some sources claim that the unique motion of rebounding can also help support the thyroid and adrenals.
• Rebounding is fun!

I have also recently begun ‘tapping’. Again, sounds a bit whacky but there are too many people convinced of its benefits for me to disregard it as it costs nothing and there is a logic behind it. It involves tapping meridians around your body. People often refer to tapping as an ‘emotional freedom technique’ or EFT. Perhaps EFT sounds more scientific than tapping but I have discarded any cynicism and incorporated it into my daily routine. Here is a link to some information about tapping…… http://www.alternative-cancer-care.com/eft-and-cancer.html

There is something I have been doing, and feel obligated to admit to as I would not be sharing the full range of therapies I am using if I did not. My reticence in writing about this is so very British. It involves bottoms and coffee. But when you are in my situation you open your eyes to all possibilities and evaluate each one on their merit. Coffee enemas appear in every, and I mean every, natural or integrative approach to healing. I could not ignore them for too long (although I did to start with). There are many benefits. Here is a list taken from http://www.naturalnews.com/038429_health_benefits_coffee_enema_detox.html

1) Coffee enemas reduce levels of systemic toxicity by up to 700 percent. According to the late Dr. Max Gerson, a pioneer of coffee enema therapy and its effectiveness as part of his famous Gerson Diet, caffeine and other beneficial compounds in coffee stimulate the production of glutathione S-transferase (GST) in the liver. GST is said to be the "master detoxifier" in the body, as this powerful enzyme binds with toxins throughout the body and flushes them out during the enema process.

According to a 1982 study conducted by the National Research Council (NRC), the effect of green coffee bean consumption on the production of GST in test mice was an astounding 600 percent increase in the liver, and a 700 percent increase in the small intestine. In humans, the effect is similar, if not amplified, during a coffee enema, as coffee is able to directly stimulate the liver without having to first run through the digestive tract. The result is a powerful detoxifying effect that is unmatched by sheer diet alone.

2) Coffee enemas cleanse and heal the colon and digestive tract, improve peristalsis. Besides detoxifying, coffee enemas also cleanse and flush the digestive tract and colon without substantially disrupting the beneficial flora that populate a healthy gut. By regularly taking coffee enemas, you will not only help keep your digestive tract clean and free of debris and toxic buildup, but you will also promote healthy peristalsis, which is the series of organized muscle contractions that move food through the digestive tract and the tubular organs that connect to the kidneys and bladder.

3) Coffee enemas boost energy levels, improve mental clarity and mood. ….the body is effectively ridding itself of poisons that sludge up the blood; decrease oxygen transfer; and clog up the intestines, all of which generally leave a person feeling fatigued and ill. A coffee enema is a particularly effective detoxifier; however, as the direct absorption of caffeine and palmitates into the bloodstream stimulates the release of bile and the efficient removal of wastes from the body in one fell swoop. The end result is a detoxifying release so powerful that many people describe it as a "high" marked by significantly improved energy levels, enhanced mental clarity, and better moods.

4) Coffee enemas eliminate parasites, candida. Because of the immense toxic load that results from regular exposure to chemicals in food, water, air, and the environment, the body is often unable to fully and effectively eliminate all toxins and maintain homeostasis by itself. Intestinally, this can result in a gradual buildup of impacted fecal matter, parasites, candida, and other toxins. Coffee enemas; however, can effectively alleviate all this by fully irrigating and flushing the colon in such a way as to break up these "nests" of disease, and eliminate them from the body.

5) Coffee enemas detoxify, repair liver. If you regularly suffer from symptoms like bloating, stomach pain, flatulence, and other problems commonly associated with poor digestion, chances are your liver is overburdened and not functioning up to par. Coffee enemas are an excellent way to fix this; however, as the coffee and all of its nutrients are directly absorbed into the liver through the colon wall, where they take on the immense toxic load that the liver is otherwise unable to process quickly enough on its own.

6) Coffee enemas relieve chronic pain, ease "die-off" symptoms during cleanses, detox regimens. Interestingly, one of the earliest known uses for enemas was as a pain reliever. During World War I, nurses actually discovered that water enemas effectively relieved soldiers' pain when drugs like morphine were in short supply. Fast forward about a decade and researchers out of Germany had made the discovery that coffee worked even better than water at offering powerful analgesic benefits, which can be particularly helpful when undergoing other dietary cleanses and detoxes that cause "die-off" and other pain symptoms.

7) Coffee enemas heal and prevent chronic illness. Ultimately, coffee enemas are one of the most effective ways to maintain a clean body that is free of disease. Even if you already suffer from a debilitating, chronic illness such as cancer, coffee enemas can provide both relief and healing without the need for drugs. 

No one, seriously determined to affect their disease, would ignore the benefits of this therapy and I could not. It is not good to do them during chemo but absolutely essential to after to help to relieve the toxic load left behind. For me, given the cancer is in my liver, there was even more reason for me not to ignore this approach. Every day (if I can manage it), I sneak to the bathroom with a big pot of coffee. This clearly confuses the boys, and if I am elsewhere, others who may notice me bringing this cooled coffee with me into the bathroom – as I have clearly given up coffee as part of my diet. Why then do I disappear to the bathroom with so much coffee? Well my dark secret is out. I actually have not written about it for fear that my mother might read about it! But I have to be honest and friends who know me urged me to just get it out there as anyone one really committed to healing should have this as a routine part of their daily/weekly programme. I combine them with an Epsom salt bath and find the private time rather soothing. The hoops I am jumping through – I had seriously better get well! 

Finally I am buying an infrared sauna. This also stands out as a solid supportive treatment that stands out as a good complement to everything else I am doing. Here is a description of some of the benefits taken fromhttp://www.cancerdefeated.com/newsletters/Infrared-Saunas-A-Fun-Relaxing-Way-to-Detox.html

…….infrared sauna therapy for cancer offers a combination of healing mechanisms. They act simultaneously to support the fight against cancer. These include:

1. Hyperthermia: Heating the body is a well-known and underused method of killing cancer cells…. Cancer cells are weaker than normal cells and more susceptible to damage from heat. Infrared saunas are superior for this purpose
2. Eliminate Toxins: Saunas also help purge the body of toxins, such as heavy metals and chemicals.
3. Improving circulation. Cancer often grows in tissues with poor circulation and thus poor nutrition and oxygenation. Infrared saunas boost overall circulation. This brings nutrients, hormones, oxygen and other substances to all body tissues.
4. Decongesting the internal organs. The liver, kidneys and other internal organs can become burdened with estrogen, chemicals, and toxic metals. Infrared saunas cause blood to move toward the body surface. This helps cleanse the internal organs.
5. Care for your body's largest organ: Your skin is a major organ for eliminating body wastes. But in most people, it's inactive because they don't sweat enough. Infrared saunas help cleanse you from the inside. They encourage sweating and free up toxins stored beneath the skin.

If the cancer is getting active again I have to up my game and adapt what I am doing. The last 3 months have shown me how easy it is to lose the fighting spirit and let doubt creep in. On so many fronts the reality of my situation hits home. I am not sure I even feel like me anymore. Not the me I was. I am not sure what my purpose. Of course it is to love my children and be the best mother, wife, sister, daughter etc. But outside of my own immediate interests I doubt what I have to offer anymore. My life was always full, working for one cause or another. Passionate about making change happen and improving things that in my view were not working, or not fair. But now my daily endeavour is so very self centred and self absorbed. Staying alive. Working to stay alive and well. I get comfort from my work as when I am involved in it I am transported from me and I can engage in conversations which have nothing to do with me and I am reminded of my old life and purpose. But even this has changed. I cannot travel at the moment in the way that I did. My work have been amazing and accommodated and supported me so that I can adapt how I work. I have cut my hours this year as I needed the extra time to fit in all my various potions and anti cancer activities. Giving up, which I certainly considered, would feel as if I was giving in and accepting my future was limited. But I intend for it to be anything but limited in length and in some sense am defiant in my determination not to give up.  Maybe the day will come but if I have my way it will not.   

My recent trip to Germany was more subdued than previous ones. I realise that I will have ups and downs and I need to stick with determination to keeping the faith and working through the downs. If I could only keep the cancer as it is today I could live a normal life (almost). I would like of course to beat it down but living with it in a steady stable state would work. I am not fussy. 

This time I went with Rupert. He has not accompanied before. Ned was on a school trip and Will went to stay with my Mum and Dad so we had the time free. It was a very special time. We spent the first night in Hamburg and our hotel had an attached spa/gym. We decided to go for a swim and use the sauna (a good therapy). We were in for a surprise. There were very strict instructions all around the swimming pool and sauna area that NO swimming costumes were to be worn in the hotpool or sauna. There were middle aged couples wandering around baring all. I am rather body reserved (especially as I am missing a nipple so baring my body is bound to attract attention, if only surreptitious glances). But I was determined to use the sauna and cleverly removed my costume and covered myself with my towel – dropping it only at the very last minute. Rupert went for a swim in the pool (you were allowed your togs on there but not everyone wore them) and had some very interesting views of our fellow swimmers nether regions. The view haunted him all night. At one point Rupert and I were in the pool at the same time swimming and talking when the life guard signalled us. I thought we were going to be told off for wearing swimming costumes in the swimming pool but he just wanted to tell us to be quiet as we were disturbing the other users of the facilities. 

In Gottingen there are about 7 really quite substantial churches. Most of them are shut but this time we managed to visit 2 of them (it is a pretty town but there is not a huge amount to see). The one closest to where we were staying was hosting a major production of Benjamin Brittan’s War Requiem. We managed to get tickets and spent our first night listening to this major choir and orchestra. It was a very peaceful (and at times dramatic) way to spend the evening.

 St Michael's

The following day, after my treatment, we went to visit one of the other Churches – St Michael’s, which is a Catholic church. It was beautiful and white inside, not what we expected from the old façade. We knelt down for a bit to pray and think and we lit a couple of candles and then discussed what we had prayed about. We both admitted to starting our prayers with a few thank yous and then asking for strength and as we stayed there praying our prayers became more specific – a miracle no less. But if it is possible to heal we should not need a miracle just the strength and guidance to know how to heal. I have not prayed regularly for a long time but more recently I have started. I always feel rather guilty that once I have gone round praying for various people and issues and being grateful for what we have I end up almost pleading that everything be OK and that we will overcome this disease. I am not really sure who I am praying to, I have always had a conflicted relationship with religion, but I do believe it offers a framework and community which can and does give many people strength in difficult times and as I was bought up a Catholic there is such a familiarity walking into a Catholic Church, wherever it is in the world, that I enjoy the atmosphere and space to reflect and yes, pray. A friend of mine from my school days shared a prayer her father had taught her, and which she says she prays for me. It is rather lovely so I thought I would share it.  ‘’Do not be anxious. The same everlasting father who looked after you yesterday will look after you today, tomorrow and always. Either he will protect you from your suffering or he will give you unfailing strength to bear it’. 

The weather there was a few degrees colder than here and it snowed for a couple of days, not really settling, but the snowflakes were wet and heavy. I suffered terribly from the cold despite having bought long johns and thermal long sleeved vests. My loss of excess fat I think has made me really sensitive to the cold and I struggled every time we had to go out into the fresh air. I really am looking forward to the warmth of spring and summer and understand better than ever the misery a cold winter can have on older people. 

Cold at Hamburg Station

It was good that Rupert finally met Dr Martin, as with other companions who have accompanied me, he too was overcome by what a lovely man he is. It was lovely to spend the time together, it has been so long since we have had that long on our own. This is not just my journey, it is his journey too and he has his own demons to face. When one is down we need the other to be in fighting spirits to balance us out. I have been weepy on occasion and he has been good at reminding me of the beauty of every day and that all is still well. I am going to plan more things to look forward to keep our spirits up and engaged with life. Distracted as much as possible, in a good way. 

Ella came home from University to be here when we got back and was ready with my juice. She cooked a curry I could eat, prepared my apricot kernals, massaged my feet before I went to bed and is here for a couple of days and continues to look after me, making sure I keep on my toes and don’t give into any self pity. 

I have not written much over the past 3 months. I have felt rather numb and unimaginative, but I hope to reverse that. I have a hard few months ahead with my new protocols and therapies but hope the sun will come out more often and help me along the way.

Root canals, amalgam fillings, detox, uncertainty and belief

On Monday 11th I had the dental work to remove a root canal with infection at the root and two wisdom teeth, also infected at the root. Cavitation is where there is infection in the jaw. This can be the result of past extractions which have left infection in the jaw which has slowly festered over years. I had cavitation under one wisdom tooth and in the top back of my jaw, on both sides, where I had and teeth removed when I was a teenager. The dentist, a specialist biological (non mercury non fluoride etc dentist), cleaned out the jaw and infections. I also had two amalgams (with mercury) removed. I had very high mercury readings coming from them and have clearly been ingesting this for years. 

Over this period I have read as much as I possibly can about dental toxicity. The dentist works with a detox programme to support you before and then after the removals - to help prevent infection but also to deal with the detox process that comes after removal of amalgams. For some reason once the mercury is moved from the mouth it can mobilise existing mercury and you need to be taking supplements to support / bind with the mercury to exit the body. As part of this process the dentist administers high dose IV vitamin C and glutatione. I returned the following two mornings for additional IV treatment as part of the detox and to aid healing. A week on, the inflammation had for the most part settled down. I am still having trouble eating and cannot chew properly yet, so eat like a rabbit, using the front teeth and where possible I eat soft food. 

I have had some detox reactions. My skin all over has come alive. My skin was my early warning of trouble in my liver - it must by my canary. I have, of course, considered whether this is a symptom of trouble in my liver but I think there is a good enough case for it to be a response to the extraction and detox. If you read about the process the detox process is expected. It does cross my mind but I feel so empowered having had the teeth removed, I feel it unlocks another pathway for healing. The infection was at the very least draining my immune system and at worst dribbling bacteria  into my system and the mercury was poisoning me daily. With them all removed it has given me a psychological boost. There are some people (Bill Henderson who wrote Heal Cancer Gently) who put dental toxicity as very high up on the contributory factors to cancer. He is not alone. I feel positive that at least now my body is not wasting its time on managing these toxins and infections. Detox has other symptoms, foggy brain among them. Dr Martin was clear that I should deal with the mercury and the infections. I reckon immunotherapy approaches are likely to work better if the immune system is not compromised like this. At the very least it has not done me any harm and at most it could be the key that helps strengthen the impact of all the other strategies I am using. 

I was in the chair for about 4.5 hours - and as well as a sore mouth I had a sore jaw. Keeping your mouth open that long is pretty hard. I tried to use all sorts of visualisation to distract my focus from the scraping and drilling and the discomfort. I did pretty well, I think I did anyway. I was not so good at the visualisation but the time did not go too slowly and I felt pretty OK after it. That night and the following morning were the most difficult. Ella came to help me and found all sorts of soft foods I could eat. I have taken the past two weeks slowly, being careful to keep my mouth clean. The last thing I need is an infection - not only would it need treating (and antibiotics are really to be avoided if at all possible to keep building my gut) but it would also give an excuse for those who doubt these treatments are worth it and think they are too invasive. Some of my loved ones did doubt the necessity of doing this. I don't blame them thinking that it is quite aggressive treatment and it self could put temporary strain on my immune system - but I know that anyone who finds themselves in my position would take any approach on its merit and balance the pros and cons and make a judgement. This is what I did and the decision was easy. Let’s hope the detox symptoms do not last long and that my immune system is already benefiting. 

I am having 2 weekly blood tests. The ones before the dental work were OK. The cancer markers were not taken (they should have been) but maybe that is a good thing. If they had been high it would simply have made me unsettled. One of my liver bloods was very slightly raised. I know my bloods and do not like that it was up - but the other liver blood test was normal so for the time being my liver is coping OK. As it was the bloods were good enough for me to feel safe to go ahead with the dental work.

My next visit to Germany was already booked for the week 14th February and we seem so close to it now that I think probably that is when I will go. By then I will have had one more blood test and they will do one also. These, and how I am will determine what I donext. Another round of dendritic cell or start another immunotherapy. I would like to think I am keeping the cancer in its place with my efforts and that we just do another dendritic cell, but if my bloods are not looking so positive Dr Martin may suggest we move to another immunotherapy approach they offer. The longer I can stay away from new treatments the better as each are another rung on a ladder of options open to me. Apart from my skin I feel well. I am sleeping well and feeling good. I need to build up my fitness which is not good. I haven't been able to exercise for a while and really need to bring that back into my daily routine. 

The kids are all back at school/college/university and life feels normal. This is good. One of the benefits of my situation is that I am at home more often as my ability to travel with my job is curtailed. Temporarily I would like to think. For now I have cut my workingweek to 70% time and work from home a lot while I recover from the teeth and as I try and avoid the travel to London on what must be the worst trainline ever. Ever since I can remember the line from Brighton to London is subject to work during the weekends, which means bus replacement services. My last two train journeys involved line closure to Three Bridges, train to East Grinstead, Train to East Croydon then train to London. The latest journey stopped at Hassocks as the tunnel through the Downs was flooded. Surely this is not a new phenomenon? Why would we not have a solution to this now? I always have a feeling that one day the work will end and the route to London will be fast and efficient and we will celebrate its ease and our luck to live somewhere so relatively close to London. But it seems easier to get from Birmingham to London. For those who commute the constant staff absences, power lines down, signal failure, points failure etc etc travel to London at the moment is torture. For this reason I try and avoid itas it can take 4-5 hours door to door.

My latest self help cancer book is the one I mentioned above by Bill Henderson. I am going to copy out some of the content in the introduction - which I revisit when I have a wobble. I will pick out some of the content which has been most influential in convincing me that I need to tread a different path. 

I will actually first start with a quote from a book by HaroldW Harper, MD “How you can beat the killer diseases”

‘What if cancer is systemic, chronic, metabolic disease of which lumps and bumps constitute only symptoms? Will this not mean that billions… have been misspent and that the basic premises on which cancer treatment and research are grounded are wrong? Of course it will, and in decades to come a perplexed future generation will look back in amazement on how current medicine approached cancer with the cobaltmachine, the surgical knife, and the introduction of poisons into the system and wonder if such brutality actually occurred.’ 

From Bill Henderson’s book…

‘As a bare  minimum, to avoid being damaged by this system, you must educate yourself. You must be prepared to get more then one opinion. Then, when you’ve found the doctor (or homeopath or naturopath) that you trust, you must be prepared to be co-doctor with him or her throughout your treatment. Better yet, get the knowledge you need and heal yourself.’

‘In summary, CANCER IS NOT A “DISEASE”, it is a symptom of an imbalance in your body! It is simply your own body’s cells. The number of unusual fermenting cells (cancer cells) produced by your daily cell metabolism (division process) has exceeded the ability of  your immune system to handle them. Your stem cells multiply much more rapidly thank cancer cells…so cancer cells are not even the most rapidly dividing cells in your body. They’re just abnormal cells that need to be killed or nurtured back into health.

Our body produces cancer cells every day, by the millions. Our normal cell policing mechanism takes care of them - until it can’t any more. Then we are eventually diagnosed with cancer. 

The cancer probably took years to develop to the point where it was detected. If you need a cause, blame it on your lifestyle. With that understanding, you also know that treating cancer is a lifelong process. Once the cancer is under control, or in “remission” you must continue to keep it there with good lifestyle choices and by supporting you immune system for the rest of your life.

You can look on cancer as a chronic condition, something like hypertension, heart trouble or diabetes. You must keep your body in top-notch cancer fighting shape.

Conventional cancer treatment destroys your immune system. Oncologists pay little attention to rebuilding it or changing your lifestyle. This is why patients with cancer treated with conventional treatment seem to get better, only to have the cancer recur in a few months or years in a more aggressive form. Additionally, the cancer that returns is usually resistant to the previous chemotherapeutic agents used. The weak cancer cells have been killed off by the treatment and the stronger ones survive, only to reproduce themselves. Eventually, all are strong and treatment resistant.’

The book goes on to share non toxic approaches to healing and strengthening your immune system. It is clearly harder once the cancer has spread but in their view and extensive experience of working with thousands of patients, even stage IV patients can heal. For those who have had chemotherapy etc (like me) the road is longer as there is so much to repair along the way.  They review some of the evidence of the effectiveness of chemotherapy (high death rates from the treatment itself not the cancer and almost non existent extension to life) and suggest that for those of us with advanced cancer, it is not surprising oncologists give us such a poor prognosis - they know that what they can offer will not cure it. But if you are prepared to believe that if only you could address the underlying causes (emotional, nutritional, toxins etc) and boost that immune system so it can take back control making your body as inhospitable to cancer then there is a path which could lead to healing. In the authors view ‘the cause of cancer is that in most cases it occurs as a result of 1) an emotional trauma, extended stress etc 2) root canal teeth and/or cavitations (CHECK!). Both of these suppress the immune system and allow cancer (and opportunistic condition) to grow; and 3) what we put in our mouth and body.

In Chapter one the authors list what they call the Four Essentials which they have taken from their experience of working with thousands of people with cancer over a 20 year period. Those who have been successful share four essentials. I will write now only about the first of these.

Essential 1: Attitude

‘Cancer’ they say ‘ is survivable’. It doesn’t matter what ‘stage’ or type of cancer. All patients with cancer can overcome it and live out their normal lifespan.  People who believe this, with all their heart and soul, get well. Those who doubt it don’t. It’s that simple’  (GULP - I BELIEVE I BELIEVE)

Two things seem to characterise the patients with cancer that we’ve seen get well: First, they have decided to take charge of their own health care; and second, they have committed 100% to some regimen involving eating habits and supplements, and (super important) identifying and reversing the cause(s) of their cancer. 

How do you get and keep this commitment and positive attitude? Gain knowledge about the wide variety of cancer survivors and how they survived. What caused their cancer and how they got over it. Seek them out and talk to them. This is not a search for the ‘magic bullet’ that heals all cancers. There is not such thing.

There are, however, literally hundreds of substances that are non-toxic and natural. Each one alone, or combined with others, has helped thousands of patients with cancer become cancer-free. There are simple lifestyle changes (diet, supplements, exercise, sunshine and emotional peace) that restore health to patients with cancer.

Of course I like to read books written by people who believe that cancer is survivable no matter what the stage. 

I have felt quite lonely ever since the scan. Not alone, but lonely. I spend so much time religiously completing my daily treatments (including some rebounding - bouncing on a small trampoline - good for the lymph system). I am juicing twice a day now. I have added a few things to my regime (including the detox therapy from the Dentist) which includes CBD oil (more about that another time). I am happy to talk about what the latest health news is but it is as if I have become my illness. It dominates my everyday simply because of all the various approaches I am using, but more profoundly it dominates as I live with what I can only call a mental electric fence. The future. You can get close but if you try and cross the line and look to far ahead you get shocked. I believe I can survive but I don’t know it yet, I have not yet reached a point where I can honestly say I have turned a corner. I am not sure what I might have been like had I not taken this path, so perhaps I have already made a great dent in my fight - given I also had immunotherapy together with the lifestyle changes. But while I can talk with others about their future plans (conversations inevitably err toward the future), over the last month or so, I have been so acutely aware of that electric fence. With blood tests every 2-3 weeks and some uncertainty overhanging the recent past my electric fence is really only weeks away. This is the uncertainty I have to learn to live with until I am more sure that my efforts are taking effect. 

I have delayed a blood test by another couple of days. I am being rather ostrich like as really I don't want to know what my bloods say at all. But as I have my next trip to Germany booked, and only a couple of weeks away, I do need to have a status update so Dr Martin and team can decide with me what the next move is. 

Cliff hanger: progression or immunological reaction

My last post was a bit of a cliff hanger. I haven't written since. I was awaiting the results of scan and my appointment with my consultant had been bought forward. Did this mean something or not? 

I am still not sure, but subsequent events would suggest that it was bought forward because the scan results required discussion. Since the date of the scan results I have had a bit of a roller coaster of a time, and as happens with scans and tests, life can about turn on the basis of what they say. I had been feeling really well since my last Germany treatment and had considered not having a scan at all knowing how psychologically hard the process is. But I did have the scan and the result on the scan report was ‘disease progression’.  I did not look at the actual scan, I think i would find it hard keeping the image out of my head. Perhaps it would help with my visualisation (which is pretty poor)?  There was one line on the scan report apart from the conclusion. This read ‘increase in number and size of lesions’. That sounds pretty scary, and scared I was. I turned from a confident warrior to a defeated victim in just a few seconds. I listened, staring at my oncologist as he told me that since they had seen progression they should act on it and he would propose that I start a new round of chemotherapy, Xeloda, which is ‘quite tolerable’ and is taken in pill form so has far less impact on your life. He assured me it was so common that they even kept stocks with them in the hospital and I could start the next day. But I want to explore immunotherapy, before chemotherapy - I said. It does not make sense to me to start a therapy with so many toxic effects and which starts me on the ladder of treatments oncology has mastered for advanced breast cancer, which ends in one place only as far as I can tell. Why could I not try a therapy which focuses on the body’s own defence system, rather than one set to destroy it. Well - simple - they are not available to people like me at this time. Not even as a trial. My oncologist did look for an immunotherapy trial I might be eligible for but they are only open to people with triple negative breast cancer. 

I left the clinic, simply unbelieving - after all I have done. It did not make sense. My liver bloods were fine. I had not had inflammation or tumour marker bloods taken so we had no picture from that. For a day I rather crumpled and retreated to my bedroom, which is where I like to go when things feel too much. I missed my office party, lying under my duvet. I asked for a second opinion and booked to see Prof. D. in London. I also sent my scan to Dr Martin in Gottingen and emailed him directly after my meeting with my oncologist. Later the following day Dr Martin got back and said he was not sure it was definitely progression as it could be a immunological reaction as part of the immunotherapy and he needed to see by bloods. The moment I read Dr Martin’s email my mood totally reversed - I was a fighter again. That made sense to me. Two weeks before the scan I had had dendritic cell therapy and my vaccine had had 11.5 million dendritic cells - more than any previous of my vaccines. I did some more research on immunotherapy and it is clear that while with chemotherapy success can be judged by a change in tumour size (as the intention is to kill rapidly dividing cells), with immunotherapy the response is less clear cut. This is a quote from one paper I found about immunotherapy: ‘…the appearance of new lesions or growth of existing lesions, as immune cell infiltration following immunotherapy may be mistaken for tumour progression. In addition, the unconventional nature of some responses…..have made it necessary to introduce new criteria to characterise anti-tumour activity’.   Basically, there is a chance that what looks like progression could be part of the immunological response. I just wanted to enjoy Xmas and have no doctors or hospital appointments so I was happy with the possibility that this was not progression. I then met with Prof D who confirmedthat withthat PET scans light up with cancer activity but also inflammation and abcessess and that immunotherapies can result in what looks like progression. He then went to another room to look at my scans and came back and said yes he could see 3 bright areas. But then he stared at my blood results and the trend from my first treatment in Germany and he was confused. I liked that - something I am doing is not delivering standard responses. He did though agree that Xeloda was something I should consider in January - which made me think that he thinks it is progression. It was not until I spoke again to Dr Martin, once he had seen my scan and heard results of additional blood tests I had after meeting Prof D, that I decided definitely what to do.  These showed good white / red bloods, good liver, low inflammation markers but a rise in one of my cancer markers (the only one they measured - CA 15-3). Dr Martin told me to enjoy Xmas and do the bloods again in January as what matters is trends - both these readings are a cross section of time and to work out what is going on it is better to have established trends - certainly in this case it is. It matters to me enormously as I have invested so heavily in an immunotherapy - if this is part of the response to that then I certainly do not want to knock things off course with a chemotherapy. If it turns out to be progression - as I cannot get immunotherapies here - I will move to another combination immunotherapy, dendritic cell in combination with another with Dr Martin.

There is another piece to this puzzle which I am taking into account and which has complicated my plans - that is my teeth. In so many of the integrative health literature for cancer I have read about the connection between teeth and in particular, breast cancer. Many practitioners believe that if you have infections in your teeth or toxic mercury, these drain your immune system and threaten cell health etc. Infections from teeth drain into the lymph system that feeds breast area (my basic biology!). Ages ago I booked an appointment with a skilled biological dentist who has written about toxic teeth - and my appointment fell between the scans and blood tests and doctor meetings. I thought my teeth were pretty healthy but it turns out my mouth has mercury levels of 98 (a factory is closed if levels reach 20) and I have a chronic infection under my root canal and two wisdom teeth, plus infection in my jaw. I was rather stunned - I could see the results of the tests and the X-rays - I really do have a toxic mouth. If you believe in the body’s ability to heal then having a toxic mouth will waste or strain my immune strengthening efforts. There are testimonials of people who claim their health only turned around once they had sorted their teeth. Now that I know what is going on in my mouth, and hence my body, I cannot ignore this information. The treatment plan would be relatively drastic with 3 teeth being removed. I was not certainwhat to do although my gut said I should get on and do it. Then, that very evening, at my brothers xmas party I met a friend of his who has a brain tumour and has had some cutting edge immunotherapy (as part of a trial) and who is doing an amazing array of things also to fight his cancer. He said that before he had the immunotherapy his oncologist told him he had to sort out any abscesses in his mouth. I also told Dr Martin about the outcome of my dentist appointment and he also agreed that much stems from the teeth and I should sort out any infectionsetc. So among all of the decision making I am still in the midst of making, Ineed to factor in having some serious dentistry. I need to do this away from my next immunotherapy so I have a chance to heal. I am thinking of the second week of January if I an secure that date. I feel I have to cover every base which has a strong enough case and to me this makes lots of sense. 

I still do not know if it is progression or an immunological reaction. I feel well and with Ella back I have so much help with my diet, juices, relaxation etc and fighting plan. I need to remind myself that I am the only person who can take responsibility for my health. I must trust my gut and I must always believe. I feel well.

A lovely friend who lost her husband a couple of years ago, sent me a book which had comforted her. Victor Frankl Man’s Search for Meaning. He spent a long time in concentration camps in the war and his short book, which he wrote soon after liberation and which has been reprinted so many times, uses reflections of his time there to consider life and how to manage the most difficult of circumstances. It is very powerful and I wanted to copy out some of the paragraphs that have really inspired me. Essentially he reminds us that we have the freedom to choose our attitude. He quotes Nietzche ‘He who has a why to live for can bear with almost any how’. It was also, shock - horror, I learned it was Nietzche who first said ‘What doesn't kill you makes you stronger’. All in all it has been a brilliant book to read to help me steal myself for what lies ahead. Such a strong message comes from this brilliant narrative and that is - hope is everything and the moment you lose your mind your body will quickly follow. 

What alone remains is the last of human freedoms - the ability to choose one’s attitude in a given set of circumstances. 

Those who know how close the connection is between the state of mind of a man - his courage and hope, or lack of them - and the state of immunity of his body will understand that the sudden loss of hope and courage can have a deadly effect. Victor Frankl Man’s Search for Meaning.

I continue with IV Vit C twice a week to help my immune system and my normal regime of juicing and supplements. I need to work on meditation(Ella gave me a great book for xmas to help me with this). Blood tests in first week of Jan.  Teeth perhaps soon after that. Germany - depends on bloods. Keeping the faith....

Had a lovely family Xmas. We had a gathering for Xmas just after my birthday and the kids had bought me a nice black sparkly dress - so out came the wig for a brief outing. If the hair doesn't work change it. 

Waiting for results, making up story lines and Christmas nostalgia

December 3rd 2015

I was teary on the day of my scan, to which I went alone. Happy to be alone. It is almost impossible not to mask your real feelings when you are with someone you love. These moments are very private and I need to be able to simply feel what I feel and express it in private. As last time, the scan involves lying in one place for am hour while the radioactive material and glucose circulates around your body. You are not even allowed to read as the motion of reading allegedly can result in activity showing up in the brain on the scan. I could, I thought, listen and had downloaded a story on my phone in preparation, only to be told that this time I was not even allowed to listen to anything. I was not very happy with this new rule so pushed back. Why could I not listen to anything? The first answer I received was something about brain activity. So I pointed out that I could hear the buzz of the loud air conditioner and if I wasn't listening to a story I would either be listening to the air conditioner as well as thinking deeply about stuff that would, I imagined, create far more brain activity. So she went away to ask her colleagues only to return with news that there had been mixed advice and it as OK I could listen to something. So I lay there for an hour in a windowless, dark room with a camera trained on me (presumably in case I fell off the bed or had a fit) listening to an audio book. It was strangely calming. The scan followed. For this I lie with my arms above my head, very still, as I am moved slowly up and down inside a giant polo shaped machine. This too was quite a calm affair. 

You can’t help though but look through the glass partition between you and the medical staff sitting watching screens of grey shots of your insides. They look from afar rather like photos of strange planetary activity. I am sure I have seen films or seen photos on the internet where the cancer shows up as green lights, spots where the radioactive material disguised in a glucose mixture is identified and gobbled up by cancer. I am not sure they really show up like this on the screen as you are actually being scanned. Perhaps. I did try a little peak to see if I could see any green lights on the screens I could see from my side of the pane of glass. But no luck - just strange grey planets and constellations of stars. I still do not know if the people who take the pictures are qualified to, at the very least, tell if someone they are scanning is full of cancer. Or do they just take the pictures and send it to someone with the skills to interpret them? In this case, as I have a baseline scan, I do know that one of the steps is for the scan to be sent to a consultant who will then compare them with the last one. 

My appointment came through yesterday, for the results. My heart jumped when I got it. The appointment is on 15th December, which is 2 weeks away. It is dangerous trying to read the tea leaves, but I think if I had been called in for an appointment very soon after the scan I would feel more nervous. I have to assume he has looked at the scan report and at the very least has not seen anything that requires immediate action. Alternatively it could be that things are very busy before xmas and this is the first appointment slot I could get. Whatever the reason - I have 2 weeks. I am not bothered by the 2 weeks, I am not really very keen to know the results I want to trust that my body will tell me if something suspicious is going on. And at the moment I feel generally pretty well. 

My life feels rather like a story. A gripping tale, a page turner. I am impatient to speed read, skip some pages and find out what happens in the end. Who doesn’t? The last time I felt this so acutely was one New Year when I was about 20. A group of us were sitting around a fire in a cottage in deepest rural Wales pondering life and the universe and someone asked what we would like to be doing this time in 10 years. The responses were really rather simple and similar. Apart from ‘end world poverty’ or ‘have made my first million’ type answers most wanted to be in a happy relationship. I remember clearly that I said I wanted to be married and would have 3 children by then. I closed my eyes and saw a picture of me with a little family around me, I could see bodies but no faces. I often think of that New Year as by 30 I had in fact met the love of my life and I did have 3 children (only just). Those early years of adulthood are strange, you live for now but work for the future knowing you are laying down the foundations that will set you up for the next part of your life and your career. Playing with relationships. Learning about yourself and navigating the world as an independent person for the first time. Wonderingwhere you will be and if your hopes will become real. It is no too late for anything. 

Have you ever come across those story books where children can choose what happens next and thereby affect the course of the story, and of course the ending. My story feels similar in that at any moment the story line could lurch in a totally different direction. An appointment to receive the results of a scan is one of those concrete moments which might move the direction of the story away from the path I would choose if I was that child deciding what I would like to happen next.  

But I can influence what happens day by day and my ambitions at that level are easier to achieve. A coping strategy is to simply not consider in any depth the different paths I could take. Spending time considering these paths takes up energy and makes the here and now less settled. So best to be avoided.

I have been enjoying the nostalgia of Xmas, the lights and smells. I have felt sad about some of the smells however. The smell of mulled wine and hot chocolate with cream. These are not on my list of allowed drinks - too sugary and too dairy. I have been more extravagant than normal in buying decorations for the house. Partly because every year I curtail my spending on anything other than essentials, which means this year I am applying the ‘sea view’ rules. My Aunt, after she was diagnosed with ovarian cancer and considered terminal, went with her husband for a few short holidays during which they initiated the ‘sea view’ rule when selecting rooms to stay, but this extended to other decisions. She bought herself a lovely new coat just months before she died. Why not? I am being slightly contradictory however, as my intention is to be around for the long term and extravagance can only be sustained for so long. So mine is tempered extravagance. I have just bought some new baubles for the tree. Baubles are items that in my view become family heirlooms. Every child has a memory of hanging their favourite bauble or decoration on the tree, whether they be beautiful old glass creations or cloth monstrosities made at primary school and extracted year on year when the xmas decoration box comes out. 

When I met Rupert at just 23 I had never ever spent a christmas away from home. On our first Xmas together (we were engaged by then), he came home to my Mum and Dads to celebrate with them, my siblings and cousins. We spent our second Xmas with them also, this time taking Ella who was five months by then. By our third Xmas together I was pregnant with Tom, and feeling bit ropey. Rupert, who was from a far smaller family, was relishing the idea of a quiet Xmas alone. All I did was mope at the silence and lack of chaos and when my family called to during Xmas lunch, to wish me happy Xmas I simply burst into tears. I could hear the noise and jovial laughs and screeches in the background and was slowly passed around the table to talk to the broader family. Since then we have grown our own family, and usually alternated Xmas - but now the children have a voice and they love the chaos of a Christmas at my parents andwith their cousins. Rupert is now fully initiated and we spend slightly more Xmas’s there. As his parents are now not with us there is less reason to stay at home.  

With Rupert away in America at the moment, and Ella in London, the boys and I took responsibility for the tree. We decorated it yesterday with the usual arguments about what decoration goes where. Basically anything considered too gaudy or garish gets banished to the back of the tree, the side that looks out of the window onto the street, and the pretty baubles hang front ways so that we can enjoy them. There is a particular glittery plastic snowman which Ned kept shifting to the front when he thought no one was looking - it is now down one of the sides in a compromise position. 

I found a moment to look through my 1985 diary - I am 14. The diary itself is still very tiny with little space to write anything in any particular depth. It communicates the life of a young teenager. Lots of swearing creeping in and frequent miserable ‘I am so depressed’ type entries followed unexpectedly by a sudden rush of love for life.  In that year we moved to an army base in Germany, just as my friends were building social lives (that included meeting boys - remember I was at an all girls covent) and planning and going to parties. Who is having what party and who is going to it is a dominant theme. A few names of boys are introduced. In those days you were lucky to get a moment on the payphone at school, and if you did you were even luckier if the person you wanted to speak to at the other end could be found or was free to talk. So we relied much on letters. Some of my entries start ‘I got 4 letters today!’. The power of the letter. An affirmation that someone is thinking of you and you are important to someone. I am not sure if life for teenagers today is better or worse - with social media there are constant and frequent opportunities for affirmations, so gaps without any communications for any extended period are almost unknown. In 1985 you could go for weeks with only a letter from your Mum. In that year there is anticipation around Valentines Day, might I get a card or two? The answer was no. No card, except of course my loyal Mum who of course sent me one. But that in those days counted only in as much as I at least received an envelope when post was handed out. 

Moving to Germany felt to my 14 year old self like social suicide. I knew no one. My mother signed my older sister and I up to a tennis course during the summer break. I was mortified to find that I was in the 13 and 14 year old age group (i considered myself far more mature and the idea of mixing with immature 13 year olds was almost too much). My older sister who was 15 at this time, joined the far cooler 15 to 16 age group and was soon invited to join some of them to some evening social event, to my consternation. We we just one school year apart. It did not take long for me to warm to the place and to meet people. In the end I had a great 2-3 years there and it was a wonderful safe place to grow up during those teenage years. 

It was in 1985 that I had the operation to remove the lump (which turned out to be a cyst) in my left breast. Could this have been the very start of the foundation of where I am today? It was in the identical position to the lump they removed 5 years ago. In my diary I clearly am more interested in the excruciating embarrassment of having to go into hospital for something to do with my relatively newly growing breasts than the physical discomfort, which I remember well as I left with a huge bandage covering my top half for a while. I had to walk with my hands in front of my chest to protect myself from the crowds at school as children pushed and shoved down narrow corridors at change of lessons or meal times. 

I have just received a call from my oncologists secretary asking if they could bring my appointment forward to tomorrow. Even seeing her name on my phone makes me go cold. She says it is because she had booked me the 15th when she saw my results were in as it is busy before Xmas and had told my oncologist who then said he wanted to see me sooner as he did not like leaving people for that long after a scan. I pressed a little wanting to know if there was any urgency in this. She could only say that it really was that he does not like to keep people waiting. I suppose either way it is not good to have too big a gap psychologically. I could be staying awake at night in a fear. Instead I am rather enjoying my not knowing as I feel so well, I hope this is a strong enough indicator of how I am. But there is that little worm. My appointment is later in the day tomorrow and I will have bloods taken in the morning. Gulp. I will distract myself with work, chores, xmas and audiobooks.

Scan tomorrow, Xmas and living life just in case

I have had my fifth vaccine and my final one of this group of five. If all is well I would go back again now in 3 months and I have a provisional date booked in February. BUT - I will have a scan before then to be sure that from all perspectives I am in a good place. My bloods were slightly mixed, which is annoying given it was the last vaccine of the five. I had a horrible cold a few days before travelling and was still snotty and sneezy while there, but getting better. My liver bloods were very good and so weremost other results (including e.g. haemaglobin), but my circulating cancer cell count and the breast cancer marker, plus my inflammation marker were all slightly up and higher than last time. But it would not be unexpected for these to be affected by a virus or infection.  So the news was not bad but in Dr Martins words ‘goodish’. It is frustrating that I was ill as I am not sure if these results actually indicate some change or really just reflect me being ill. So I have agreed to a scan. I had previously decided I did not want one, not just because it exposes me to nasties but because psychologically it is really hard. But Dr Martin and my oncologist here are working slightly blind without that information. Dr Martin has a Plan B up his sleeve but needs to be sure if and when to use it. In my mind there are three outcomes - 1) it is the same as before - this will be disappointing but stable disease is not bad, and if this is the case I go back for my next dendritic cell in February 2) it is better than before - if so also I go back in Feb 3) it is worse / and or somewhere else - I go back sooner for Plan B.  The very thought of option 3 is terrible and I am not sure I would be that happy with option 1. 

The scan is booked for tomorrow (Thursday 26th). Gulp. 

Last blog I wrote about hyperbaric oxygen therapy. Well I could not attend the session I was booked on before my trip to Germany because I was snotty and had bad ears. I had a session last week and all last night my ears have given me gip - and I am wondering if maybe it was the HBO sessions that triggered my first cold, which started in my ears. I need my immune system to be fighting my cancer and not diverted by a cold or ear infection, so I think maybe HBO is maybe not right for me. As a child I suffered terrible ear aches and infections, maybe I am not very good at dealing with the pressure changes. I may still go and just breath the oxygen, but outside the chamber and so not under pressure. 

I am going to whinge again about juicing. Juicing is a mainstay of my healing plan. But I simply hate it. I have had some many very kind suggestions about how to make nice juices but the reality is that to get enough mainly organic vegetables etc it costs money and take loads of time. You need a certain mix to get enough juice to make a large enough drink. It is easy to run out of some of the core juicing ingredients and be left with vegetables which I only use minimally or which don't produce much liquid. Replacing my stocks is a job in itself as there is no very local source. While I am lucky to live in Brighton, my normal source (over and above a juice box I have delivered but get through very quickly) is Infinity Foods. A trip there takes time and my week is pretty full already with my work, the kids, making the stupid juices, trying to fit in exercise and yoga (which I also am having trouble to keep up with). So not only is it difficult to simply get the ingredients, if you run out of the mixture that is more palatable - you can't just throw the rest away you have to work your way through them which means the quality and taste of the juices deteriorates. Knowing what makes a nice juice and having the right mix of ingredients all the time are practically incompatible. Oh, and have I complained about the actual time it takes to clear up after you. I was spoilt to have Ella most of this year, but withher gone I now realise quite what goes into the whole process. The drinking of the juice is a miserable affair. This is probably halting all my enzymes from working, so I try and make it not a miserable affair and cut up pieces of foods to eat in-between each mouthful to cover up the taste. I think when I started I was up for anything to fight the beast. As time has gone by, I am still totally devoted to survival but the reality that this is now my lifelong focus is hitting home and that is hard. Keeping my supplements in stock, preparing them each morning, juicing, trying to work out what to eat (when I have literally no cook gene in me and now I have cut the amount of food types I can eat the task is even more difficult), booking oncologist appointments, scans, having my monthly injection to keep me in menopause (which also hate), my appointment to talk to a consultant about removing my ovaries and on and on. 

Tom (my 17 year old) would say to that rant ‘Mum, that’s a lot of hating!’. It just seems rather interminable. I know what my long game is and this is how I will achieve it but that does not mean I don't get tired with it and wish it was all back to normal. I have gone off alcohol, so I don't physically miss it, but socially I do. Evenings with Rupert, snuggled at home in front of a fire with a nice glass of wine. They are not all gone but I need my sleep (part of treatment plan) and do get tired (hormones and diet). Things have changed. And for Rupert too. For all of us. We are so privileged to be so happy as a family and I would prefer to be in the situation I am in now having experienced that happiness and love than to never have done so and be healthy. But I can't deny there are times when the foreverness of my situation hits me. However long forever is. 

When I was first diagnosed, in those very first terrifying moments when simply everything poured into my head in one go I remember thinking ‘Is that it?’ Most of my thoughts if I am honest were practical. Would I go to work the next day? Would I ever go to work? How would I organise the next few months (which I must have assumed I had)? At home every time I opened a drawer or a cupboard I just saw stuff and it all seemed so meaningless. Now I am denying death, I don't think like that anymore. In fact it is those very thoughts that indicate you have given up already and are preparing for death not living life. As I grew in determination to heal and live I found a new energy. It is hard I realise to keep that focus. My hormone injections make me very tired for a few days and when I am tired the shadows lurking in the dark start moving in. I start to doubt and I feel fear. My scan tomorrow has me all disturbed. What is it going to show? And what will I do with that information. 

I did think about postponing it until after Xmas, but I decided I would simply drag out the uncertainty. I spoke with Ella yesterday who reminded me - is everything OK right now? then everything is OK. 

Christmas is approaching far too fast. Last year before Xmas we invited friends and neighbours for a drink or to celebrate, and we will do the same this year. I had cancer in my liver last year, I just did not know I did. However much I am living for now and presuming life I cannot help but have a, just in case, approach to everything. For years I have fought the kids desire for a chocolate advent calendar (although they always seem to get one one way or another) but this year I bought them a hideously expensive one at Hamburg airport - just in case. I am fiercely building those memories, just in case. I like to put the Xmas tree up earlier than Rupert, but he is travelling to work for the first 10 days of December so I have decreed that if the xmas trees are for sale at our local supplier this weekend we will get ours before he leaves - so we can enjoy it for the longest possible time. Just in case.

I will find out what my scan says in a week or so. 

Growing curly gracefully; adding to my healing arsenal and diving 16ft

My hair is growing thick and fast and brown and curly (see pictures of me looking smiley). Since a child I have been blond. Originally very, very blond and as I grew into my teens it started getting darker and more mousey until I discovered hydrogen peroxide. This was my standard hair lightener for a couple of years until I was old enough and rich enough to go to a real hair dresser where I was introduced to the torture of the plastic cap. A cap covered in tiny holes which they would squeeze onto your head. They used ametal instrumentto pull strips of hair out through the holes. You ended up looking like a mad professor or someone who had stuck their finger onto a live wire. I endured many many such sessions. With very thick hair to start with my head would throb like mad, but for beauty I endured. It took years before they discovered more dignified and less painful ways to colour hair. What I never considered then was the amount of chemical rubbish I was exposing myself to. Years and years of yuk. I would have been better off sticking with the hydrogen peroxide - which turns out to have many good properties (the version made for human consumption). After my last bout of chemo and hair loss I considered just gutting it and going brown, but I simply could not. I had never considered myself particularly exercised about my looks but clearly I am. I had grown up a blond, it was part of my identity. So I continued to dye my hair even after my first cancer. This time, in my pure and clean living - there is no way I will be returning for any toxic hair colouring. So begins my life as a nearly brunette (with the very very odd white hair). I may need the skills of a good hair dresser though as I get through the next painful stage of hair growth. It has come through again curly. Not as tight curls as last time - the chemo curl, but still curly. Within a short while it will just be big hair, out of control. But I want to grow it back to a length I am used to and this means getting through the next few months as gracefully as possible. 

The problem and joy of having advanced cancer, is that everyone is supremely lovely to you. Which in most cases is something that just makes me feel loved and supported. Except when I suspect they just want to make me feel good - I doubt the many lovely comments about how well I suit short brown curly hair - even though I appreciate them greatly. 

My recent and fourth trip to Germany was good. I went with my friend Kate who helped distract me with gossip and suduku. I try and play this to combat chemo brain and the effect of hormones which also impact the brain. The travel there was straight forward, we flew from Heathrow to Hamburg and caught the train to Gottingen, my usual route. On the Thursday I had my bloods taken, with the results were shared with me on the Friday. For some reason I was far more nervous this time getting the results. I had had a pain around my liver and just contemplating the idea that the results might indicate some progression was terrifying. I have been so strong in my resolve and belief that I can conquer this, but at moments like that you know that in a second that resolve could just crack.   

Dr Martin looks at a number of things to determine how I am doing. My weight (which has gone down but not since last time, this was weight I lost earlier on when I changed my diet so radically); my liver markers, my inflammation markers, white cell count etc, breast cancer marker and my cancer load. He also asks how I am and generally takes on board how I look. On the Friday I came into the clinic, already nervous, knowing I would hear my results soon. The time before, I had met him at the reception before I even started my treatment and he had told me there and then he was happy about my results. This time he was not at the reception, only Christina the nurse was, and she was very busy. I could see my results sitting on her desk. No one said anything, so of course I started imagining the worst and from that moment on began to read into everything Christina did or said. Why was she not telling me what they said? Was she avoiding my eye? Surely she knows! I am desperate to know what they say and her silence has to mean that she cannot bring herself to mention them in case she reveals the truth and that is Dr Martin’s job. The reality was, she was busy as they were closing the clinic for their annual holiday and so had to squeeze in more appointments than usual and it is not her job to communicate results to patients anyway. Dr Martin was busy and I only got to see him at past midday, just before he administered my vaccine. When he did come in with my results in his hand, he communicated them as if he had expected nothing less and could not understand why I had been in such turmoil. I took that to mean that perhaps he has seen a trend and therefore had some sense of what to expect, and given my good health he was not surprised by them. The liver bloods were all good, the white cell count still bit low - but he puts this down to all the chemo I have had which has affected my bone marrow, my inflammation markers were very low and my iron was good (cancer gobbles iron when it starts progressing). My circulating cancer cell (CEA) was down from 4.3 last time to 3.0. The only marker that he admitted he would have liked to have seen more change was my breast cancer maker CA 125 - this is just under double the high point of the normal range - it has reduced slightly from last time but not lots. He did though say, and I have read much about this, that this can be an unpredictable marker and can confuse the picture - so should not be taken alone. I still would have liked to see it going down more, but I will give it time :). 

The relief took a while to sink in. The treatment makes me a bit tired and after the vaccine I get the interferon and related fever. This time however the fever was less than the time before. I have been taking and recording my temperature since my second vaccine, to compare how I respond. The first time I did this (during the heat of the summer), my temperature peaked at 39.2 degrees. Last time it peaked at 38.7 and this time it was only 38.2 and the fever took longer to come on and lasted for less time. I asked Dr Martin about this and his response was that this is because there is less cancer around my body to fight. 

On the Saturday morning, the day after the vaccine, I had my last hyperthermia treatment after which we made our way to the train station. We had seats on a BA flight that left at 16.50 and we were catching the 11.43 train from Gottingen to get into Hamburg 2 hours later. This has proved a comfortable transit time from the station to the airport with time for lunch. This time we encountered the mother of all train disasters which meant we missed our flight and the next one and ended up having to book a room into an airport hotel and catch the early flight on that Sunday morning. 

UK Rail network at its best

It all started with an announcement that the train was running 20 minutes late. This was not bad as we had some leeway. We got on the late train and found a seat in one of the nice Harry Potter compartments and settled down to some suduku and reading, feeling quite relaxed. And then the train stopped. And it did not start again. It had stopped in the middle of a very rural area with a small road which ran parallel to the train line and a crop field. So the view was pretty at least. Phone connection however was not so good. I am so used to hopeless disastrous journeys on the UK rail network I was rather shocked that the German network could and did suffer them also. We had a nice man in our compartment who translated all the announcements and we got a good insight into how the German rail network deals with a broken down train situation. Actually, it was not the train it was the power line, which a previous train had damaged. First, they kept us regularly updated. Second, they offered all passengers free drinks. Then, worried that people would start getting too hot and need air, as the air conditioning system (along with the water and flush function in the loos) had stopped with no power also. So they opened the doors of the train. We then saw a group of young people with rucksacks who had clearly decided they were not going to wait for the problem to resolve, and they jumped off the train and we saw them walking past us down the little road, smiling and laughing. But then they closed the doors again. They obviously decided that opening the doors was not a very safe thing to do, until of course the fire brigade arrived. The firemen stopped outside our carriage so we got a prime time seat and could watch what was going on. They all looked as if they had just got out of bed and and were happy for the overtime. Being called up on a weekend was not a usual occurrence. They brought crates of bottles of water which they left in the doorways of the carriages to make sure people were hydrated. Then they brought a medic onto the train and walked up and down to check there were no medical emergencies that needed attention. Meanwhile they keep us updated.  It became clear that the delay is going to be quite long and they are looking for anengine that could shunt the train past the section of broken power cables. But arranging this would take time. Other trains on the line had been evacuated and passengers taken by buses, but they had run out of buses.

All this time we are trying to work out what to do and thank goodness Rupert was at homeand my phone had some connection for phone but not for internet. He spent almost 4 hours on and off the phone with us and on the phone with BA trying to rebook us onto another flight. We paid a £100 transfer fee for the later flight, but we missed this also. At one point we worked out that the train had come to a halt relatively near Hannover and there was a later plane from there if we could catch it. So we decided that once the train was shunted past the broken cables we would get off at the next station where they would reconnect the train to the cables, and we would catch a taxi to Hannover. If we stayed on the train to Hamburg we would certainly miss the last plane from there.  Funnily enough hundreds of other people from this and earlier trains, had decided to get off at this station too, and we found ourselves in a tiny, middle of nowhere town with crowds of people desperately working out how to get out. No taxis. No motels. Nothing. After a few failed attempts to find someone who might drive us we realised we had no choice but to get ourselves back to Hamburg and accept we were not going to get home that night. At that point we had a slightly frantic charge back to the train we had just got off, and which was preparing to leave. Thank goodness we made it back on or we would possibly still be in that tiny little place. 

Through all of this the atmosphere on the train was that of one big party. There was one group dressed in traditional costume who were clearly on their way to some festival or party. They had boxes of alcohol and when the train stopped they started working their way through it. Singing loudly and eventually, after a few hours, collapsing in various states of disarray, across the carriage. We had to pass them all when we moved to the front of the train to get off at the small station. There were a couple sprawled in the passage connecting two carriages, who were literally so drunk they could not move their legs out of the way, even though they tried. I think we may have run over a least a foot with our suitcases as we squeezed past. Then, when the train finally pulled away, I noticed a large group of our carriage standing up looking through the window, smiling and waving frantically. There was film crew on the platform. This was clearly such a rare event it hit the local and who knows, possibly the national news. I forgot to mention the compensation forms which were handed out personally to each passenger with an explanation of how to claim for the delay. Wow. 

I have added to my treatment regime. My hope is that all will be well and even better at my next German visit. This will be the last of the group of five that is part of this dendritic cell therapy. If all OK I will move to one vaccine every three months. So I have been reflecting on my regime to make sure I build on it to keep that healing going through the 3 month gap between vaccines. Here are some of the changes I have made.

I am trying to increase my juicing. I had been having a pint a day. I am working to increase this to 2 pints a day. I use almost 95% organic vegetables when I make it myself, but I have started buying the odd juice from the Station juice van. It is hard when I am working in London (which I do about twice a week) to actually fit in making the juice, let alone sourcing the content and being a Mum to the boys and all this entails (even when I am to going to London).

Next - I am in the middle of a parasite cleanse. This was something, as I noted in my last blog that Chris Woollams from Cancer Active suggested. I have travelled all my life and to many many different countries. We all have parasites (good and bad), but if your load is too great they simply compete with you for nutrients. Many simply live in your liver - and I need to give my liver the best chance of being healthy, so for me it was a no brainer. I use a Neways product called Parafree (which has black walnut in it). I continue with my super artemisinin and then I supplement with a good probiotic and continue with daily sauerkraut to build up my gut flora etc. The course was 25 days with a 5 day break and I am on the second 25 day stint, to kill any last nasties. I certainly felt a bit headachy when I started and I read up where I could about peoples experience of parasite cleanses. What I learnt was that side effects are related to death of parasites racing round your blood and your body trying to manage this all. It also confirmed that I would suggest anyone with cancer consider this as an approach. It just seems logical. So much of your immunity depends on your gut and if you are competing for nutrients etc best get rid of the bugs. 

I have also started taking 100mg of aspirin daily and cimetidine. I also take 500mg of metformin twice a day.

Why Cimetidine? 

Well Cimetidine is a type of anti histamine used for heart burn - it is also known by its brand name Tagamet. The lifeextension.com website describes it like this ‘Although cimetidine was developed to relieve heartburn, acid indigestion and sour stomach, numerous studies demonstrate that this readily available medication may offer powerful support in the fight against cancer. Unfortunately, many cancer patients and even oncologists remain unaware of the compelling evidence demonstrating its efficacy.  By preventing cancer metastasis (spread), slowing or halting tumour growth, and prolonging survival, cimetidine may serve as an important adjuvant therapy for people fighting colon cancer and other malignancies’

Why aspirin? 

I have known for a while that studies have indicated that long term aspirin use can reduce the likelihood of recurrence and I had even been thinking about starting it before I was diagnosed this time, but never did. The evidence is only growing that it can e.g. slow the spread of lung cancer by 20% to 30% and that taking a low dose aspirin a day for more than 10 years can drop stomach cancer deaths by 31%. According to the MD Anderson Cancer Centre a study of recovering breast cancer patients found those how took a daily aspirin for 3 - 5 years were 60% less likely to suffer from a recurrence. The aspirin swallowers also were 71% less likely to die as a result of breast cancer. If only I had acted sooner!

Finally why metformin?

If you have not already watched the Surviving Terminal Cancer documentary (link on resources page), please do. It features the story of Professor Ben Williams who was diagnosed with a tumour in March 1995. The entire right side of his brain was “infested with a tumour”. He took his treatment into his own hands and is inspiration to many people like me. Cancer will find all sorts of routes to thrive and this calls for multiple approaches to block and confuse the cancer. Single therapies will never last long as the cancer will simply re-route. And so Ben Williams built himself a regime which included a whole range of drugs, many of which I am using and a good number what are called repurposed drugsi.e. designed for some other condition but with cancer prevention/fighting component - such as aspirin. Among the drugs he used was metformin, which is originally a drug used for diabetics. Here is what Professor Dalgleish says about it (and other drugs I am taking):

“Say we have a patient who is fit and healthy in many ways but is going to be dead within a few months. If that patient asks me ‘Is there anything else I can do?’ I will say ‘Yes. The data suggests you could consider metformin which appears to selectively reduce glucose uptake by tumour cells as opposed to normal cells. I suggest aspirin to tackle your inflammation and let’s correct your Vitamin D levels to boost your immune system’.

I do not know what Prof Dalgleish would think about hyperbaric oxygen therapy as this is another treatment I have just introduced to my armoury and I will talk about this a bit later. First I wanted to talk about the recent documentaries by Ty Bolinger and the Truth About Cancer crew. I have been watching this avidly. I shared the link on the Cancer is Pants Facebook (https://go.thetruthaboutcancer.com). He produced a series last year and I saw a couple of them. This year the series was more hi tech and professional. They released one a day for nine days so for the past week or so I have been glued to these. I honestly believe anyone who is affected by cancer, either themselves or a loved one, should watch this series. It is a bit ‘believe in God and he will give you the answer’, an underlying creationist theme that bubbles up now and again, there is also a bit too much soft focus lens on Ty and his family. But if you can overlook that, just listen there is loads of good information and importantly, hope. I have also grown to rather like Ty and his wife Charlene and am thankful for them sticking their necks out and pulling this together, so I am OK with soft focus. They feature what they call ‘cancer conquerers’, people who have had really dire prognosis and who have lived. They tell their stories about what it was that they did to beat cancer. These are the best sorts of stories for someone like me. Just hearing a real live person who was stage IV and who is living now many years on just makes all the difference. If just one person has managed to defy the odds then why can’t I? But what is clear to me is that there are many more than one person, there are a good number covered here and in the book Radical Remissions and elsewhere. The message of the documentary series is - cancer does not have to be a death sentence. Take control of your healing. They interview a whole range of practitioners from over the world who support people with cancer and who use a range of different, importantly non toxic, therapies. One, called RIGVIR, is a new virus based approach which was discovered in Latvia, and has had really impressive results (documented in scientific journals) with a range of cancers. It is currently registered for use in Latvia and people in Latvia with melanoma can get it on their health system. For other cancers it is still available only privately. But, if I was not doing Dendritic Cell Therapy this would definitely be a treatment I would explore. 

There is a very explicit anti big pharma and the ‘conventional’ medical establishment message. I am in no doubt that cancer research and cancer treatment is dominated by a treatment approach that is far too commercially driven and which has, as a result, either directly or indirectly suppressed alternative promising treatments that are not radiotherapy, surgery or chemotherapy. For those oncologists who might have watched this I can imagine they feel rather bashed and as if they were all part of some deliberate plan to cause unnecessary pain and harm to their patients for commercial gain. This is unfortunate as there is some good substance in the series - and if only we really could engage oncologists and cancer research in a more cooperative way there would not be what feels like two extreme camps. What can each learn from the other? There are too many examples of doctors who offer alternative therapies being what can only be called persecuted and patients prevented from exercising choice and accessing other treatments for there to be no sniff of conspiracy. Why would the FDA or equivalent get so hot under the collar over apricot kernels or other different approaches? They are quite OK allowing people to have treatments which are well documented to have some horrible toxic effects and limited if any chance of prolonging life yet they are prepared to throw millions (mainly, but not exclusively in the USA) trying to close down clinics and prosecute practitioners who offer another way. It is not as if we have made much progress in the fight against cancer - we still have similar miserable outcomes as years ago. 

We are just better at diagnosing early (this helps but by the time there is a solid tumor the cancer has already been around for a very long time) and we are making some strides in alternative approaches but lets hope you are alive in time to see any of them being made available to those of us with advanced cancer now. 

If the series is rather ardently anti conventional therapies it is I would suggest frustration from the efforts that have been made to silence any alternative view. In the UK, oncologists are shackled by the protocols they have to follow. For some of the above medicines I am using I have had to seek out alternative means of accessing them because, despite well documented potential benefits of these low cost drugs, oncologists do not seem to have the liberty to prescribe any of them. They have the straight jacket of protocol.

I am still interested in investigating what is happening with the Medical Innovations Bill which I have heard the Lib Dems partly scuppered prior to the election. I can’t admit to any insights but understand it will have another hearing. I want to find out if this would open the door to more flexibility in the treatment of advance cancer patients to enable a more imaginative and personalised treatment plan and increase access to trial drugs before our immune system has been utterly devastated by round after round of chemo. 

Mainly the series helped me not feel alone and gave me more fight. It is difficult not to doubt and to feel unsure, but when you hear from around the world, stories of survivors and different treatment alternatives I have hope. Concrete, tangible hope and so I continue with my regime, upping my juices, sticking to my diet and supplements and now adding Hyperbaric Oxygen Therapy.

Hyperbaric Oxygen Therapy

HBOT has support as an aid in cancer treatment and so I decided to find out more. The argument, according to the Cancer Active website runs that ‘using a Hyperbaric Chamber (which is designed to increase blood oxygen levels and is proven to work in this way with a number of illnesses), will overcome one of the main influences of cancer, namely that cancer exists in a low-oxygen environment and plentiful oxygen can kill it off. HBOT has been shown to significantly reduce inflammation in the body and this can be a precursor to cancer.  The site reviews some of the evidence which shows it is already used to good effect when used with radiotherapy where it seems to reduce tissue damage and side effects. Some centres use it to improve the uptake of chemotherapy drugs and improve results. Research has also shown that HBOT not only increases the oxygen levels in the body’s healthy and radiation damaged tissue but it will also increase the oxygen levels in cancer therapy.’ 

It was a scientist called Otto Warburg in the 1930s who won a Nobel prize for demonstrating that oxygen was the enemy of the cancer cell and that it killed them. Cancer cells thrive in an environment where oxygen is depleted (hypoxia). Since that time many cancer experts have considered ways of delivering oxygen to cancerous tissue in the hope of killing the cancer cells and restoring the tissue to a normal state. 

But - it seems that while there is little doubt that oxygen kills cancer cells the issue is how to deliver it so that it can - and there is little hard research evidence to show that HBOT adds value as a stand alone treatment. If combined with a ketogenic diet it does however show more promise. A ketogenic diet is one involving a high ‘good fat’, low carbohydrate and lowish protein combination. I think, without explicitly choosing a ketogenic diet I am in fact already on one (possibly I need more fat). I know there is research that HBOT can extend remission of MS patients and help reduce some of the painful symptoms and slow progression. It is also used sometimes to support wound repair in situations where wounds are having trouble healing - because the oxygen supports tissue repair. 

More research is clearly needed but from what I have read I am sufficiently convinced that - (my golden rule) - it will do no harm and has a good chance of doing some good if I continue a ketogenic diet. So I tracked down the nearest place which offers HBOT therapy. This is a centre for MS patients but if there is space people with advanced cancer can ‘dive’. It is a whole new world which involves walking into what looks like half a diving bell, with little port hole windows. It fits 5 people at a time and dives last an hour. As a beginner I started with a 16ft dive. I will gradually move up to 24ft and then 33ft and need at least 15 sessions in the next 6 weeks to achieve saturation of the blood. 

I had my first dive a few days ago. I was a bit nervous. I had my official introduction and safety talk, which included how to communicate with the outside once the door was closed and the pressure began to drop. The chamber fits 5 chairs snuggly, each with a sort of airline table which can be pulled up so you can lean your magazine or book on it. My first dive included one person in a wheelchair, whose chair fitted into one space and a second person in a wheelchair transferred to a chair like the one I was in. All four of my fellow divers were very experienced divers and had been coming, some for many many years, and told me about the impact they felt they received from the treatment. I was the only cancer sufferer (I dislike that word, I am not suffering at the moment and don’t intend to - do I call myself a patient - I suppose I am). I was the only cancer patient. It was only fair to share this with them as they were very kind and wanted to help me, as it is all quite strange to start with. But as I did not have MS I would not experience the same benefit as they do. Introducing myself as ‘Louise, I have stage IV cancer’ always causes a degree of shock and I feel rather unfair even sharing this information and often would not. But in this situation it was necessary. I spend my days with mainly healthy people facing the uncertainties of life, just as I did before my diagnosis - but who invest time and energy preparing for the future, whatever that might be, making decisions for today with an eye to the impact a number of years hence. Just as I did. Here I was with people who face everyday physical and psychological struggles linked to their condition - just like me. Except in this situation, being stage IV perhaps I represented an even more extreme diagnosis than them. Maybe not. But it was strange to be with this group of people I did not know, who had clearly struggled for far longer than I have and who were so warm and kind. We didn't get long to talk before the door was shut and we put on our masks as the pressure went down. It is like going up or down in an airplane and you have to equalise your ears while the pressure changes. Then you sit there for an hour breathing oxygen through a mask (making the sort of sound I am sure you hear if you are a real diver as you breath in). You can’t talk (unless you take your mask off) but you can read and even use your iphone/ iPad. I did think I would try and visulise healing but if I did not distract myselftime slowed down and I felt a bit hot, uncomfortable and nauseous. So I text a few people, did some work and read some rubbish magazines. It was all rather bizarre. But I am now booked for 14 more sessions before xmas. I need to double check I now need to check I am really on a ketogenic diet. 

Good fats, half term and Halloween

Boys at a castle in mid wales (dolforwyn)

I know I need to eat more good fats. My weight has steadily gone down. I have lost all fat on my bottom. This is incredibly uncomfortable. Sitting in the bath on two bones is pretty sore and yesterday I drove back from my Mum and Dads, from mid Wales with the 3 boys. We had been there for some of half term. 

This took about 4 hours and my bottom by the time I got home was very uncomfortable. I spent the last hour trying to shift into different sitting positions to lessen the weight on these now exposed bones. Ella came home for the day to help me unpack, to feed me up and generally look after me. I was away for only 3 days, Rupert has been in Australia for work for 10 days. At home I have all my supplies and ingredients around me and can control what I eat, my juices and my supplements. Being away took me away from what has been quite a sheltered few months, and I was very tired. I used to be so full of energy so I was rather sad to feel so easily wiped out. Ella monitors me mercilessly. She will call and quiz me on my state of mind, my diet, supplements and sleep patterns. She could tell I was a bit low and that made her low, and that thenmade me low as I don't want her happiness to be reliant on mine. But she took charge and got a train back from London so that as I arrived at midnight she could empty the car and get me to bed immediately, then make me breakfast when I woke up, prepare me a bath and generally mother me. I am now in my local coffee shop typing while she is making me a batch of sugar free flapjacks and homemade muesli for the week. We have been thinking of ways I can up my fat intake. I have just tried dissolving a tablespoon of coconut oil in hot water which I then drank. That was not too bad at all - so I will continue with this as it seems a pretty direct way of ingesting fat. I should really cook more in coconut oil but with some ingredients I find it ruins the taste. 

This years more basic attempts

Last years Halloween masterpieces

It is halloween today and we have some pumpkin carving I need to stop typing and get back home to join in. Last year we used some great american carving templates and achieved some pretty impressive masterpieces. This year I left pumpkin buying to too late and the only ones we could find are too small for the templates so we will return to our normal more basic attempts.

The boys (Tom and Will) are Walking Dead fans and I apparently look just like Carol (whoever she is) - so they have forced me to dress up like her and I am supposed to open the door to trick or treaters and say “Just look at the flowers”. Walking Dead fans should apparently know exactly what that means. 

My last of this group of 5 vaccines happens on 13th November (which is a Friday), but I am using reverse psychology - and assume this to be significant. If all is well I will then return only in 3 months. My oncologist here has seen me recently and does not want to see me until after christmas - so as long as I stay feeling fit (and put on a bit of weight) I am feeling hopeful. My next big medical intervention will be the removal of my ovaries. I have yet to see the consultant about this but have an appointment. I am trying to work out if there is any good reason why I would not do this. At this point I rely on the horrible monthly injections in my stomach (xeloda). I feel terrible for a few days after these and they are just another medical appointment to remind me. Having my ovaries out I understand is more reliable and I need to be post menopausal for the current hormone pill I am taking (letrozole). I understand the operation can make you feel as if you have been kicked in the diaphram by a horse. It is a day case, and key hole surgery, but they blow up your stomach with gas and this is what can be very uncomfortable afterwards. I also don't like the idea of being pumped with anaesthetic and then pain relief drugs. This will give my body a shock when it is in the middle of healing. But then I cannot live on xeloda - I think I could only ever take it for 2 years anyway - so maybe better to get this done while I am healthy. 

Jackie Collins, Erin Brokovitch and Parasite Cleanses

I did something today which caught me unawares, but helps illustrate my state of mind at the moment. We are at that annoying time of the year. It is not summer and it is not winter. Some days are nippy and wet and others warm and muggy, but cold in the morning so getting dressed is a complicated affair. Travelling into work from Brighton I have to get a train to London Bridge and then walk a good 20 minutes across Tower Bridge to my office. The change in weather from getting up relatively early, to reaching my office can be like traversing 4 seasons in one stretch on some days. If I am not equipped for all eventualities I can be either over dressed, under dressed, whipped by the wind and rain with no protection at all or sweaty heaving around an unnecessary rain coat and umbrella. My drawers at home still have predominantly summer clothes but I have to seek out warmer items when the temperature drops. Today I was cursing my trouser drawer which is bulging and yet I can’t find hardly anything to wear. Not because of the vagaries of the weather (although this does feature) but because I have shrunk and my trousers, winter and summer, all fall off me and I look scrappy and disheveled if I wear them.  They simply hang off. In the summer I did not wear trousers much so it has been as the weather has begun changing that my trouser problem has felt more acute. Ella found a couple of old pairs of her trousers so I do now have a pair to wear. But this leaves all my existing trousers taking up lots of room with almost no prospect of being worn. Yet. And that was my strange moment. I was musing as I stared at these useless garments. I should just throw them all away. Since being diagnosed there has been quite a bit of clearing out. It is all stuff and what good will it do you if you are not around? What good does it do you now? And I am a person with a lot of stuff. But today my first thought was, just throw them away. And then I hesitated. Would I ever need them? To need them I would have to have put on some weight. To have put on some weight would require time. To put on that amount of weight would probably need quite a bit of time. Dilemma. Do I put them in the charity bag? Might I need them again? That is when I realised I had subconsciously thought about a time in the mid term future when I would still be around. I actually had a thought about me in the future without any ifs or buts, my musing was not about if I would be around but if I would put on the weight I have lost in any time that would justify keeping the trousers. 

I

This moment reflects a slow but solid change in how I am experiencing my cancer and what I am thinking about it and its chances of it curtailing my future. I have charted my progression from simple acceptance of chemotherapy as the mainstay treatment for me now and in the future to the seismic changes I have made to almost every part of my life (at least how I look after my self) and growing faith in an approach that sees cancer as something that can be healed. I realised today that for a while I have had parallel emotions, the over riding conviction that I can influence the quality and length of my life, with a shadow that pokes its head and rudely disturbs me at vulnerable times, in waiting rooms waiting for results or when I am tired. This shadow is the Golom that whispers ‘its all rubbish, give in, you know what will happen in the end you are just deluding yourself and possibly everyone else’.  So lurch from a unshakeable belief that I can and will beat it (that is what I felt for most of last week) to this to crippling fear, usually precipitated by a twinge in my side, which does happen or a story in the paper. Jackie Collins is the most recent such story.  I read in the Sunday papers she has died from breast cancer. She did not tell her family she was diagnosed with stage 4, seven years ago. I was rather impressed - what a lot of noise I have made! I was also quite impressed she lasted 7 years. That would be good. But she was 70. She had 26 years on me before this diagnosis. I am sure at the time she felt cheated of her old age. Oh to get to 70. 

But for the most part I am positive and these moments of fear do not last long. When they visit me I read and re read stories of survivors and books by practitioners who believe we can heal and that cancer is not a disease but a symptom.  Why would our bodies create something to kill us? Our bodies have been carefully constructed to live. In order to address the cancer I have to address the cause, which is what I have been doing, and help my body wrestle back control. I have probably said this before but I will say it again - imagine if over the past 50 years the medical establishment and pharmaceutical colleagues have, with the best intentions, been using an approach to tackling cancer which destroys the very part of us which we need to fight it, our immune system. The implications are huge. 

The more I read and the more I learn of advances in immunotherapies and other alternative approaches, the more this possibility seems real.  There are a good number of studies which capture the very poor performance of chemotherapy as a means of extending life. There are a good many studies which expose the death and disabilities which are so often the consequence of it. And yet somehow it remains the mainstay treatment and culturally we have been so accepting we are relieved when we hear a loved one, newly diagnosed, has begun treatment. This is exactly what I did first time. I chose to have chemotherapy as I felt this was ‘belts and braces’  as my oncologist called it - everything I could do to prevent its return. No mother could do less but take whatever measures necessary to live. It is inconceivable to most of us us that not having chemotherapy might in fact give us a better quality and prolonged life. But that is what some studies suggest. Why then is it that for so many of us, chemotherapy feels the only path we can take. 

I have been imagining the script of a future blockbuster. Set sometime in the future it would be in the genre of an expose of the tobacco industry or Julia Roberts playing Erin Brokovitch - charting the case against chemotherapy.

This blockbuster would have scenes with a roving camera capturing company directors called into emergency meetings following the publication two new studies - yet another concluding that, bar a couple of relatively rare cancers, additional survival among patients who have chemotherapy is almost nothing above that of those who do not have chemotherapy. The other presents data comparing quality of life among those on chemotherapy and those not on it. The results for those on chemotherapy are shocking, the side effects and related medication and hospitalisation following complications contrast starkly with those on alternative treatments or no specific medical treatment. (This evidence actually already exists).  The experience many years before within the tobacco industry overshadows the thoughts of all present. They must be careful that there are no leaks as they begin to consider the implications. What would happen to their business model if this evidence became more mainstream and patients started voting with their feet? What would happen if the families of patients who die from side effects start asking questions?

The parallel story in this blockbuster would be that of the protagonist, a handsome relatively junior oncologist who gets to a point where he (or she) can no longer ethically prescribe chemotherapy but has nothing else up his sleeve. Could he really suggest dietary changes? Parasite blitzes? Strategies to destress? Some basic food based supplements (tumeric, fish oils), some vitamin and mineral supplementation and some low cost old drugs (aspirin, low dose naltroxate, metformin). Then would he be an oncologist? 

The end of the film would be set at some point in the future when these new targeted therapies and successful immuno therapies are widely available and cancer is more like HIV is today.  A chronic disease which can be kept under control in most cases. The period we are living in now would be the last decade of ignorance. Those of us, like the protagonist oncologist in the film, joining the growing global community, connected now by the internet, sharing stories of survival and strategies to heal which do not involve chemotherapy. Picture an underground network sharing healing strategies, working to expose the truth against the odds. Big pharma and their networks stretching through the boards of big cancer charities and health oversight committees, with vested interests - the last thing any of them want to see would be any revelation that might undermine the golden goose of chemotherapy until they have something else up their sleeve to replace it with. So they undermine those practitioners who dare challenge the status quo. Only those drugs and approaches which have undergone rigorous randomised controlled trials can ever be prescribed, anything else ‘has not enough research evidence to support its use’. And so treatments of no commercial value cannot and do not attract the significant investment needed for those special trials. The cost of the trials become a barrier to progress - only those therapies that will make someone lots of money having any hope of getting through this obstacle course. 

The protagonist at last is proved right and the community of survivors who took their care into their own hands and rejected convention treatment finally win out. A cultural shift occurs and what was once part of the fabric of the health system becomes a horror story from the bad old days. Children will say ‘when my grandmother was alive she had medicine which made all her hair fall out’. 

It would be gripping! 

We need more investment in alternative approaches, comparing them fairly to standard approaches today. I honestly could not say that I would never have chemotherapy again. I do not want to. Were I able to join trials that tested new targeted approaches which did not destroy my immune system if my cancer progresses then I would. But for me I have a ladder of treatments ahead which are mainly chemotherapies and hormone if I follow the normal path of someone with advanced cancer. I still believe I am not eligible to go on most trials until I have exhausted known treatments (most chemotherapies and homone treatments). Really? 

What is the practical alternative in this period in history where scientific advancements in how cancer works is revealing all sorts of possible approaches to keep it in check, but with these still largely unavailable to oncologists they have mainly chemotherapy, surgery and radiation as their approaches. Healing is imprecise. There is no one pill or drug you caninject. You rely on compliance of the patient to stick to a range of strategies to support the healing process. Not something realistically I can see oncologists around the world ever investing in. It would be much easier to by pass the long intense time consuming healing strategies and give patients a clever drug to outsmart the cancer. Such a drug would be ideal - but it does not exist yet. So in the meantime what do we advanced cancer patients do? We learn not to be afraid. To see cancer as cells that need some attention and a body that needs some repairing. We explore other approaches to healing that those who have survived have implemented and we take charge and simply so no. No I am not going to die. Will to live is the ninth strategy outlined in one of my favourite books ‘Radical Remissions’.  If our brains can think we are on an amazing new treatment and respond accordingly even if we are in fact on the placebo then why can't the opposite be true. If doctors more or less tell you you are going to die or there is no cure then might you not simply live out their prediction. So just say no. I am not going to die thank you very much. And that is pretty much the most important first step. 

Apart from creating a story line for a future blockbuster I have been getting used to life without Ella. We took her and her bags by train to her University accommodation in London two weeks ago almost. I have seen her twice since then which is probably cheating, but we miss each other. She wrote a long list of instructions for her brothers and Tom has now taken over checking if I am up to date with my supplements and green tea, apricot kernels etc and they all pay attention to my diet in case I am caught nibbling on something I should really avoid. I think it makes them feel they are actively involved in making sure I am well. They are actively involved in making sure I am well.

I have also started a parasite cleanse and am exploring how I can increase my juicing, which is time consuming and as a result I do not have enough of them a day. I have been talking to the Juice Revolution the juicing business that works out of the front of Brighton Station.  www.jointhejuicerevolution.today. They are passionate about juicing and we are cooking up a plan to try out a way to help me get the vegetables I need, in the right mix, packaged up to make the process easier. I will write more about both next time.

PS Check out this 

        The shameful past

The history of the discovery of the cigarette–lung cancer link: evidentiary traditions, corporate denial, global toll

        Robert N Proctor

        Correspondence to
Dr Robert N Proctor, History Department, Stanford University, Stanford, California 94305, USA; rproctor@stanford.edu

        Received 5 July 2011

        Accepted 22 November 2011

Abstract

Lung cancer was once a very rare disease, so rare that doctors took special notice when confronted with a case, thinking it a once-in-a-lifetime oddity. Mechanisation and mass marketing towards the end of the 19th century popularised the cigarette habit, however, causing a global lung cancer epidemic. Cigarettes were recognised as the cause of the epidemic in the 1940s and 1950s, with the confluence of studies from epidemiology, animal experiments, cellular pathology and chemical analytics. Cigarette manufacturers disputed this evidence, as part of an orchestrated conspiracy to salvage cigarette sales. Propagandising the public proved successful, judging from secret tobacco industry measurements of the impact of denialist propaganda. As late as 1960 only one-third of all US doctors believed that the case against cigarettes had been established. The cigarette is the deadliest artefact in the history of human civilisation. Cigarettes cause about 1 lung cancer death per 3 or 4 million smoked, which explains why the scale of the epidemic is so large today. Cigarettes cause about 1.5 million deaths from lung cancer per year, a number that will rise to nearly 2 million per year by the 2020s or 2030s, even if consumption rates decline in the interim. Part of the ease of cigarette manufacturing stems from the ubiquity of high-speed cigarette making machines, which crank out 20 000 cigarettes per min. Cigarette makers make about a penny in profit for every cigarette sold, which means that the value of a life to a cigarette maker is about US$10 000.

Tob Control 2012;21:87-91 doi:10.1136/tobaccocontrol-2011-050338

Bucket list, memories and treatment up date.

It has been too long since I last wrote my blog. We basically spent from the last week of July to the end of August on holiday, either in Mallorca or France. I was determined to be well enough for us to disappear as a family and just spend some time together, away from normal life and to give me time to really repair after the chemotherapy and shock. There is the matter of memories also. How many summer holidays might we all enjoy - so we wanted to take as long as we could away. It is now the 15th September, I have since been to Germany, the kids are back at school and Ella leaves for University on Saturday.  I did attempt a blog in early August, but I did not post it then. I will do so now and pick up again after the short amount I wrote then. 

August 1st Mallorca

A very lovely friend has lent us her apartment in Mallorca so we are here for a week. I have been so excited to have some uninterrupted time as a family.  Now we are here, together I feel deeply sad at times. Everyday that is gone fills me with trepidation. Will this be possible again? I am well, the kids are relaxed and my illness dominates only a little, when it comes to clearing up or making decisions about what to do. When there is disagreement I am allowed the c-card. This gives me decision making authority. What I say goes. Everyday that passes eats into my time. Tick tock. Tick tock. I fear the end of the summer. Sun and warmth makes simply being, easier. 

My bed looks over a small bay and I can hear the waves swishing back and forth. Last night I saw a cruise ship pass far in the distance. An enormous beast, lit up like a Christmas tree. I started to think about the merits of a cruise. I have never been on one and never particularly wanted to. But I am curious. I like the idea of waking up in the morning to find myself gently transported to another beautiful or historic location. I would never have considered going on a cruise before but now that I may not have the luxury of time to try things out at a leisurely pace I am found myself wondering if a cruise would be on my list of things to do before I die if the timeframe is limited. If I lived a long life I would probably let curiosity get the better of me. But if my life is curtailed would this be anywhere near the top of things to fit in. I have actively avoided the ‘bucket list’. But everyday something comes into my mind, a book I want to read,  a place I want to visit, I play I want to see and I feel a heaviness in my chest, something pressing down and I catch my breath. How much do I want to read X book? Or go to X place? Which order would I place these would like to dos? Priority or would be good. How will I fit them all in? Time is racing by too fast. It is already 6 months since I was diagnosed. I may just have to give in and be more deliberate about a bucket list, at least for a few of the things I really do want to fit in. Included in this would be a trip in a camper van. I want to read War and Peace again. When I finished it the first time I felt utterly lost. For days I walked around in mourning. I met an old woman around that time who told me that the best thing about getting old was that your memory went and you could read books you love for a second time as if for the first time. Ever since then I knew I would read it again later in life and that was some consolation. A few weeks ago I bought War and Peace again. This time as an audio book as I had some free credits on Audible. I admit to skipping large sections of the War chapters when reading it first time. I wonder how easy it will be to do this on the audio version, or maybe if I listen to it it will be easier to digest these parts of this huge literary work. 

15th September 2015 Brighton

I am perservering with War and Peace on audio. I am quite a few chapters in and remain completely confused as to who is who and what in fact is going on much of the time - but I remember it was slow to get into last time so I will keep at it until I find that original magic which I have most definitely forgotten. The voice of the man reading the book is slightly off putting as none of the characters seem in the least attractive or likeable at this point and I wonder how much this has to do with the image the reader communicates as he puts on different voices for each character. How he manages to jump from the voice of an aged Princess to that of a young officer in the space of a couple of lines I don’t know. I appreciate the skill even if I do not like the Princess sounding like Dame Edna. 

We spent such a lovely time together in France. I slept and tried to build up my fitness. I have lost quite a bit of weight, not unhealthily but it doesn't give me much of a buffer if I need strength. I began to run. All the kids went running almost daily and encouraged me to do the same (I had said I needed encouragement). I am not a natural runner. My body is not used to running as an exercise and the hormone pills I am on make my body feel like that of an old lady at times, so getting myself up the hill near where we were staying, often in some heat was a huge achievement for me. I began running every other day and was pretty proud of myself by the end as I could do the 3 mile route without stopping. Dr Nesslehaut in Germany (colleague of Dr Martin), when I asked him what else I could be doing to help myself responded, said that I should be doing regular energetic exercise to get my heart pumping more oxygen round my body. Since getting home I have only been running once. I find it so hard to fit it in - days are just not long enough. But I have some friends and neighbours ready to join me and make it enjoyable and fixed part of my diary. 

My hair has grown through, nice and thick, and the curls are beginning to show. Last time I had the most horrible curly haired stage which I hated intensely. I am not sure what to do this time - do I gut it out and live through it or keep it short. I thought I would wait and see how bad it gets. At one point I feared it would all come through grey but it is brown and the sun as softened the colour - only the odd white hair in sight. 

On 2nd September (the day of my 20th wedding anniversary) I went back to Germany, this time with Ella. We arrived on the Wednesday and I had treatment on Thursday, Friday and Saturday morning before coming home that evening. This was my third injection (out of an initial 5 monthly injections). On the Thursday they take my blood to test before they give me the injection on the Friday. I felt well and my instinct was that the bloods must have improved somewhat since last time as I felt so well and we have been so strict with my supporting healing strategies. Despite this the evening before the results is always a bit of a mental minefield. My main interest was my circulating cancer cell reading which should be below 5 and was 9.3 before the first injection. Before the second injection it was 6.6. This time I wanted it below 5 but needed to prepare myself for anything. Going up? I somehow did not think this would happen given how I felt. What if it had stayed the same or reduced by a couple of points only to say 6.4 or 6.3. This would have been a blow. The other scenario I considered was it reducing to below 5, but only just - say 4.9. That would have been tricky - within normal range but only just. When I arrived on the Friday morning Dr Martin was at the reception desk, my heart was beating a little fast. I smiled and we chatted in a friendly way, I am wondering if he has seen my results, can I read anything in his face. He did not keep me waiting and said in his relatively thick German accent ‘ Today I am happy. Do you want to know why I am happy?’. He was holding some papers that looked very like some blood results. And then another patient came to the counter to ask a question. Time slowed down. Ella and I were on tenterhooks. When he returned to face us he had lost his train of thought and was about to start a new conversation. I asked him ‘Why are happy today?’. ‘Ah yes!’ he said ‘Because your bloods are very good this morning. You are what we can now call - a responder!’.  

My circulating cancer cells were down to 4.3 and other bloods he looks at to check progress were going in the right direction. I still have a breast cancer marker that is above normal but lower than it was. And I know 4.3 could be lower still. But I cannot be too greedy - this was a good set of results given I had at that point only had 2 injections. What I cannot say is do these results reflect this treatment alone? Do they reflect hormone treatment I am on? My diet? My supplements? other parts of my survival plan? I will never know but clearly some combination is working and the science behind dendritic cell is to my mind compelling. I go again on 7th October for my 4th injection and then on 11th November for my fifth. Assuming all is well I then go down to every 3 months and eventually every 6 months - if I get that far with no progression that would be good news. Each visit now costs about €7500 so I am working through the funds everyone has so generously given and raised. We continue to fundraise, slightly lower key at the moment, but I am so grateful I have been able to have this treatment. I feel confident with Dr Martin. 

September is always a time of change. New schools, new classes and timetables. There is a familiarity and life feels so normal. The children are happy. I am determined that they do not grow up with a memory of having a mother who was ill but memories of normal family life, with no fear. I do feel fear sometimes. The normality makes me afraid. It is as if it is laughing at me. So normal but so not. Then I pull myself together. I am forging a path to survival. I would like to be writing in many years hence and be proof that it all worked out but right now, I am going in the right direction. The mind can create so many different scenarios of what next. For now, I will take the sensible plan for all eventualities route while embracing the normality.

I am slowly progressing on my plan to organise the family photos sooner rather than later. I have pulled out my old diaries. I have written one since the age of 11. I have never read them. Too embarrassed. But now I am ready, ready to accept whoever I was. I want to write up my life for my children in someway as when I go, even if in many years hence, all of those details that made me me, will be lost. Pieces will exist with loved ones but the jigsaw can only be put together by me. So I want to write it down. It feels therapeutic. I am getting my things in order and that includes my thoughts and my collection of memories and memorabilia from my 44 years. 

My very first diary was a little white 1982 diary with a page per day. I was in my second year of my Catholic Boarding school and my parents at the time lived in Saudi Arabia. I had been desperately homesick during my first year, and continued to be so for subsequent years. I worried incessantly about almost anything, mainly school work, friendships, lost needlework and occasionally about far more worldly things such as nuclear holocaust (the fear began after a showing of the film ‘When the Wind Blows’.) My school reports describe a girl who ‘if only she was less anxious’ or ‘worries too much’. 

At 11 my diary has little detail. Immediate emotion. Facts such as it was so and so’s birthday. Or ‘Lulu went to hospital. She hit her head while swinging round’ Monday 25th January 1982. It makes frequent reference to homework and the amount of work I am doing or have to do.

Scattered throughout the 1982 diaries are indications of my academic potential. I was clearly not an obvious brain unlike some of the girls in my class but I most definitely did the best I could with my potential and compensated for natural brilliance with focus, determination and hard work.

Friendships dominate parts of the diary.  My best friend Sophie (who remains my oldest best friend) and I met on our first day at school. In the early years she often dumped me to be best friends with someone else. Even today I remember those painful friendship trysts which dominate parts of my 11 year old diary. Were she not my goldenest friend now it would perhaps not be so funny to look back at this pre pubescent angst. I note, it was never I who dumped Sophie but always the other way round. I am and remain in most things fiercely loyal. (thinly veiled insult to Sophie). I document how one day Sophie tells me she does not want to hang around with me but I can still be her friend. 

What did we watch and listen to in 1982? That year I saw Gone with the Wind, The Return of the Pink Panther and Jesus of Nazareth.  On April 19th I note that I bought 3 tapes Bow Wow Wow, Bucks Fizz and Ultravox. 

On religion the Diary notes nothing particular about my beliefs only of my attendance at Mass frequently. In those days we went to school on a Thursday and a Sunday. On Palm Sunday 1982 (4th April) Had Mass. I gave out the Palms. I also made us all a cross out of them. On that day I also tried to explain to Anthony about Heaven (Anthony is my younger brother).  I do not elaborate and am not sure what I could possibly have said to explain it, but can imagine. The most significant religious event of that year was Pope John Paul’s visit to the UK. The school (a Convent) was in the utmost excitement and we were given celebratory tins of travel sweets with a picture of the Pope on the lid. My mother took us children from mid Wales where we were staying with my Grandparents, by Coach to Cardiff to see him in person and celebrate mass on June 2nd 1982. I remember the painfully early start. ‘We saw the Pope at Cardiff. We got up at 1.00am. I went to sleep in the middle of the mass. I took pictures.’ 

As I get older I write in much more detail, so my diaries in my late teens are full of pages of scribble. I reckon it will take me a good while to work through these but I am so pleased to have the opportunity to reflect on my life as I saw it then. I had always packed the diaries away thinking I would look at them as an old lady - but something like this makes you ask, why wait? 

I continue with my fierce programme to stay alive which outside of dendritic cell and hormone treatment involves my diet, which I have described and supplements, some acupuncture, some moxa, some exercise and not enough yoga and meditationn at the moment. I booked a two hour session with Chris Woolams who runs the Cancer Active website, which is a great resource www.canceractive.com. He will buddy you for a fee and I wanted to share what my regime was and see if he thought there was anything he felt I was missing. Since I last wrote I have added a few things to what I take. I will list them here and in future blogs will write a bit more about some of them. I now drink bicarbonate of soda in the morning, mixed with lemon to alkalise my body. I have started metformin (an old drug used by diabetics) to help regulate glucose and reduce inflamation. I take a 75mg aspirin daily, a vitamin D 5000 mixed with vit K and cimetidine (an old antihistamine which has side effects which are anti cancer - it is not registered for cancer use so of course you cannot get your doctor in the UK to prescribe it - but I have found a way to acquire it). I have also started modified citrus pectin following my discussion with Chris W. I continue with Low Does Naltroxate, apricot kernels and pancreatic enzymes and later this week will begin a course called Parafree - to eliminate parasites from my body. There is a good deal of work to indicate that we all carry a large parasite load and that this can create the conditions in the gut etc that enable cancer to take hold. I have travelled all over the place over recent years as I work in international development. The last 5 years have seen me in Sierra Leone, Nigeria, Zimbabwe, Kenya, Ghana, Malawi, Tanzania and Ethiopia at least. So I would not be surprised if my parasite load were higher than normal - I reckon it won’t do any harm blitzing any remaining parasites. I already take super artemisinin (wormwood). All of these deserve more time and explanation and I will return to them. It is hard to fit all the supplements in as some cannot be mixed with others. 

I need to design a pill box that can cope with the number and complexity of timetable necessary to stick to the mix I am on. I wonder if one exists that suits my needs. 

My next hurdle, or one of them at least, is whether to have my ovaries surgically removed. I continue to have monthly injections to push me into chemically induced menopause as part of my hormone treatment, but the injections are painful and the most recent one left me with a fist sized dark purple bruise and some swelling and lots of tenderness on my abdomen. Either I continue to have these each month of I just have my ovaries removed and that will do the job.

Dendritic cell round two, examination of the larynx and spinal chords

It is now almost a week since my return from my second visit to Gottingen for my second dendritic cell injection. I travelled with a friend Paula, who helped keep the show on the road, made sure I had my morning juice and supplements and generally took control in the post injection window when I lie on my bed with a fever for a good few hours. 

This time I also took William, my 14 year old. He is the only one of my children to learn German and this was a good experience for him. More importantly I am trying to carve out special time with each of the children to give them all one on one Mum time as I consciously lay down memories.  This was a good opportunity for William time. 

I was also from a family of four and I remember the only time I really ever got time alone with my Mum was in the car when she was ferrying me somewhere, to a doctors appointment or the dentist. I had traintracks on my top teeth for 6 months of my life and that meant a few Mum trips to the orthodontist.  My most concentrated Mum time ever happened at the age of 7 or 8.  We were living in Saudi Arabia and I suffered terrible ear problems. My ear drum would burst all the time leaving gunk all over my hair and pillow in the mornings until I was flown to Cyprus for an operation to remove my adenoids. This was the nearest military hospital (my father was a Royal Engineer in the army for much of his career). The joy of the trip was that I went alone with my mother. As I could not fly soon after the operation we had 2 full weeks together. Mum hired the cheapest vehicle she could which turned out to be a small minibus with a missing window pane and we would do day trips, driving around the hairpin beds with the plastic sheeting covering the missing pane flapping frantically as we explored the island.

For this latest trip to Germany we landed in Hamburg and took a taxi to the central station to catch our train to Gottingen. On the way back we discovered the cheaper rail route from the airport to the station which is pretty straightforward (unless you have a suitcase as large as I did the first time I visited). This time we stayed in Hotel Central on what looked like the quiet Judenstrasse. No lift, and our room was on the top floor. In the height of summer this meant that our room could get hot so we had to leave the windows wide open. Which let in all the noise. At night the quiet Judenstrasse was anything but quiet. The sleepy looking bar opposite was clearly a popular night spot, music, singing, laughing and general hilarity way into the early hours. Then just as that settled down the trucks began. Perhaps it was the acoustics of the street but it sounded like a constant stream of tanks rolling up and down the road through to getting up time. We liked the hotel though, they were friendly and helpful and it was really well located, close to Dr Martin’s clinic and to the town centre. 

William walked around with a go pro filming a vlog (video log) which we will try and link to (we have a way to go in our vlogging technique). I went to the clinic 3 times, on the Thursday, Friday and Saturday morning. On the Thursday and Friday I had the infusions they use to support the Dendritic Cell Therapy (including Zometa and Newcastle Disease Virus) plus hyperthermia treatment each morning. On the Friday at about 12.30 I had my second injection. This time there were 64 million dendritic cells. Followed by the interferon to stimulate a fever (which peaked at 39.2 degrees and lasted around 8 hours in total). Dr Martin and his partners use a blood test which examines the circulating tumour load as part of their assessment of DC therapy. I have since read that this is in fact considered a more effective prognostic test compared with imaging. Those with circulating tumour load of less than 5 do better than above 5, very simply and the lower the better. My load last time I came in June was 9.3, which is pretty high I think. This time it had reduced to 6.6. Still above 5 but this is a clear decline. So Dr Martin, using this and  my other blood results and my well being, said this was better than he would have expected. This news buoyed  me and made me feel very positive. I am home now, feeling fit and well and ready for a lovely summer with my family. 

When I got home I had an appointment with an ENT specialist to investigate something the PET scan had shown up in the space behind my nose. This involved having a very long thin camera being stuck down my nostrils. As they were just looking at the area directly behind the nose they did not need to use the full length of this piece of equipment. The official name of this procedure was an endoscopic examination of the larynx and pharynx. As the back of the throat and nose are are covered with rapidly dividing cells and the PET scan picks these up so there are frequently followup investigations from PET scans where other anomalies are identified which are often nothing but need follow up. It was nothing in my case. I had not felt worried, until perhaps a minute or two before in the waiting room, but that waiting room feeling is inescapable. The procedure was only a little uncomfortable and it was all over pretty soon. 

Earlier this week I caught some of an interview with Melanie Reid, the journalist who writes a weekly column in the Times ‘Spinal Column’. (Listen to the interview on iPlayer). I have occasionally read this column. Her spine was crushed falling from a horse and the column charts, among other things, the physical and emotional challenges of everyday life and the impact of her accident on friends and family. I was fascinated to hear her. Her voice is strong and were you to hear her talking about some other subject you would have no idea what she has to manage to simply survive everyday. The frustrations and constant reliance on others. 

Her words had a significance I would never in my previous life have anticipated. The accident was 4.5 years ago and she admits to still not being reconciled to her fate, not accepting. With that I differ, even though it has been only a short time really since my diagnosis of advanced cancer I really have had 5 years to at least conceive that my life may not end as an old lady eating scones and cream with my best friend. Even though I had a good ‘prognosis’ (whatever that is) when I was first treated the possibility that I could be one of those for whom cancer came back was always in the back of my mind. I remember the first time I was diagnosed, early on in the process when I was unclear of how serious it was, I found myself with tears in my eyes as I watched the pretty banal and everyday scene of an old woman sitting on a train, looking elegant and reading her paper, maybe on a trip to visit her grandchildren, and all I could think was ‘please let me grow old, please let me grow old’. Not something I would normally have wished for as the creases of age began to show on my then 40 year old face. 

Over the years, after that diagnosis, these thoughts subsided. They are back. My earlier blog explored sudden death vs diagnosis of terminal cancer with time to spare. Listening to Melanie made me think about the loss of control and independence that would come with a spinal injury resulting in almost total paralysis. This strong woman spoke of the friends who provided her an incredible support network. She also spoke of the impact on her children and how she was determined that her disability would not become theirs. She has a son who is studying in New Zealand, and she made it clear that she wanted them to live their lives and not have to stay close to look after her in any way. Then her voice broke and what she said resonated so powerfully, not only I am sure with me but with any mother who finds herself in a similar situation. She spoke to her son often and wrote to him but did not share her downs with him. She wanted him to remember her as the mother ‘who can do things’.  She chokes slightly on these words. 

The impact of my diagnosis on my children has helped define my response. I was the mother who managed everything, I am the mother who manages everything as many mothers and fathers do everyday, from knowing where their favourite trousers are, signing the various permission slips that they pile home with, coordinating logistics to get them to and from clubs or friends houses and on and on. I work and am generally a busy and can do sort of mother. And that is what I want them to remember me as (and to continue to experience me as). I was actually only not very well during the chemotherapy as that made me weak, the cancer so far has made me only a bit tired and given me dried skin and some heart burn (before diagnosis). Now that I am recovering from that chemo and eating and sleeping well and managing stress etc etc I am pretty fit and well. If you didn't know it is hard to believe there is anything wrong with me at all. So I can get firmly back on my pedestal of Mum who can do things. 

Emotionally I wonder perhaps if in my determination to make sure the children’s lives and thoughts are not dominated by what is wrong with their mother, I do not allow them to see me emotional about the cancer ever (except Ella). How hard it is as a mother to see your child emotionally struggle knowing there is little you can do about it but love them. Flip this around and imagine what it must do to a child to see their mother emotionally struggle and being unable to make it better. The main result is a household that remains happy and almost normal (except that they are all very good to me and clear up after meals making me sit down, monitoring my juice taking and being sensitive if I look as if I need a rest). I hope the day never comes,  but perhaps one day I will be less mobile and more physically dependent and not the mother that can to things. We have a toilet downstairs which has a shower that has never worked since we moved in. We had a plummer around as my relatively new water filter was not working and while she was there (yes! amazing a female plummer and brilliant at that) we asked her to look at the shower to see what it would take to mend it. This involved discussions about the shower tray which at the moment is deep and tricky to get in and out of (and is currently home to lots of redundant shoes). We agreed on a solution which she very diplomatically referred to as ‘future proofing’ which would make access to the shower easy for someone who finds it difficult to walk. Again, I intend to defy the odds but taking sensible precautions is the only sensible thing to do. It still offers a window to the horror or what could be. A horror which I do not dwell on and intend to never experience but know that it is the lot of many many advanced cancer patients at one stage in their journey. 

I am for now grateful for my health today. That I can get myself out of bed, make my own cup of tea (green of course), go to the toilet alone, walk to the shops, catch a train, walk the dogs, go on holiday. I am not confined as Melanie is to the reality of the everyday effort and dependance to simply eat and generally survive. I know that if that were me, I would work on a different type of survival strategy as I am sure Melanie does, to make the very best of such a situation - but goodness it must be hard. 

The other type of condition I have thought about is alzheimers. Early onset alzheimers. I am yet to see ‘Still Alice’ but have heard about it and have also recently spoken to someone about a friend of theirs who was diagnosed at 54 after a year of friends thinking she was just becoming a bit flaky until she started forgetting things like paying the rent. Knowing you are losing your mind, your memories, yourself. Is that like death? For the family it has the same effect but worse as there is still the body to care for. I do not morbidly dwell on these things but they have such a different significance for me. I cannot help but consider my lot with other everyday tragedies which affect people and their loved ones so profoundly and from this reinforce to myself what is positive about what I have.

We leave for a week in Mallorca on Monday and later to France. Spoiling time together, hopefully with the sun. Perfect for immune boosting activity. I return to Germany early September and between then and now have no significant medical appointments (except my monthly injection to keep me in chemically induced menopause). 

Quack cures or genuine alternative therapies and scan results

I think I will award myself an A minus this time. The cancer is still there (but not obviously worse or better as far as can be read from the scan) but my liver bloods were all really good and I am very well. As far as I am concerned now this is a pretty good outcome. The  more I become convinced of the metabolic origins of cancer the less afraid of it I feel. That said I definitely felt very afraid as I waited for the results. It was impossible to avoid that stab of panic that rises occasionally with the many what ifs that flood your mind at times like this. My younger sister, Cecilia, was with me and tried valiantly to distract me as we waited. I had had my bloods taken earlier that day and I saw the envelope with the results being delivered. So the delay before I was called in was laden with meaning. Clearly they (the breast care nurse is always with the oncologist during appointments) were discussing how they would communicate the results to me. Then they opened the door, and my heart beat a little faster as I grabbed my bag and began to stand ready make my way in, when they called another woman, with very short hair under a hat, into the office. 

We have a lovely summer planned as a family and my immediate fear was that this would not be able to happen if the results were bad and cancer would again dominate. When I was called in eventually the oncologist just pushed the blood results under my nose. I have not yet experienced good news from this oncologist so am not very sure how to read him in all situations. I would say this was an OK result. He clearly would like to see the tumours in the liver to clear but good bloods and a healthy me are good outcomes. I now do not need to see him until early September. Before then I have one more dendritic cell vaccine (I leave this Wednesday), a relaxing summer with sun and good food and longer on the hormone treatment, so lets hope by the time we reach September there will be some evidence of clearing. It is clearly very comfortable where it is. I am not sure I am technically in remission, as this I think happens only when there is certain percentage decline in tumour size, but I am stable. I am also not sure there is much difference between stable and remission. So this is all good news and I feel happy, enjoying that I feel quite well. I am savouring little moments, conversations with the children, seeing my wider family - like having a plate of my favourite food in front of me, trying to chew it slowly to make it last rather than gobble it down, which I have a habit of doing.

The PET/SCAN did show up one thing they need to investigate. The oncologist was pretty confident that it was a red herring, but it needs following up. Something showed up behind my nose. My oncologist is not only a breast cancer specialist cancers of the neck and head also and so I trust that it is almost certainly something else (infected sinuses?) - but I still have to have a camera up my nose and the inevitable sneaky worries that will surface as this is investigated. 

These results make me feel more confident that whatever I am doing it can't be doing anything too bad and I feel more bold in my belief that this is something I can keep under control, indeed heal. I have been reading more widely and there is such a large number of researchers, doctors, health practitioners and expert patients who believe that something untoward is happening in the world of cancer. 

When you first read much of this literature it is difficult not to feel that these are people obsessed, in some mad world of conspiracy theory. Big pharmaceuticals bad. Chemotherapy poison with few success credentials. Claims of therapies which are being squashed and discredited as they are being pedalled by quacks who are out for your money and have no regard for your health, if they did they would comply and support the main conventional therapies rather than put your life at risk by suggesting there may be another way. And then you keep on reading, and listening to testimonials and hearing people from all around the world who have taken a different route and survived, or at the very least extended their life with good quality - and a little worm starts burrowing away in your mind. What if there was another way? What if cancer really was fundamentally largely the result of a metabolic disorder? What does chemotherapy, radiation or some of the targeted therapies do to address this in the longer term? If you really want to live, and I really really want to live, then you open your mind to honestly anything, things a me before cancer would probably have disregarded as a bit whacko, but I am slowly converted. 

Something fishy is going on in the world of cancer. The health of our cells rely on what we put into our body and how we treat it. Surely if we have a metabolic disorder which helps prevent the immune system from playing its part and keeping cancer (that is in all of us) in check, we would need to address this if we actually wanted to survive longer term. Zapping a tumour to get an immediate reduction in size (which is what chemotherapy can do) is not on its own going to address the fundamental range of factors which contributed to the cancer growing out of control. Indeed, and rather disturbingly as I have mentioned many times, it actually impairs your immune system, which is the backbone of your own  bodies defences. 

I say something fishy is going on because of the large range of alternative therapies which are based on good science and are not only disregarded by most of the medical establishment but they are actively discredited and in many cases practitioners supporting patients with such therapies are subject to professional censure. In the USA there is a long list of cases of Doctors and other health practitioners actually being persecuted, even imprisoned for offering such alternatives. There has been a recent case rather closer to home which I am aware of but need to check if it is ok to talk about it here. 

These alternatives, when you look into them, are things like high dose vitamin C therapy and B17. Now B17 essentially comes from a range of fruits and vegetables but apricot kernels are a well known source of this. I have not found literally one piece of credible evidence that B17 supplementation is dangerous even at high doses, yet there is a long history of practitioners being persecuted for offering this and pure laetrile has been illegal in much of the USA for decades. There is a massive literature containing evidence of the beneficial impact of B17 on cancer and many many testimonials of people reporting impressive responses after using it as part of a broader approach to cancer. Apricot kernels are not exactly going to make anyone rich. They are certainly unlikely to kill you unless you eat so many you burst (as far as I can see from the research) yet there is plenty of evidence of death from chemotherapy treatment yet this is used as the mainstay treatment for cancer. At worst B17 would not do anything. The history of suppressing the evidence around this nutritional supplement is macabre. 

It is not only parts of the medical establishment who either disregard this evidence at best and at worst actively target practitioners who offer it - but big charities such as Cancer Research. When I was diagnosed this time and started my research I kept coming across some rather vitriolic anti Cancer Research material and blogs and couldn't understand why. I now do. It should be the Cancer Research of this world, who raise so much money from people who want to see their loved ones survive, who champion another view of how to treat cancer and to support the necessary research to definitively support some of these alternative treatments which will never make anyone rich. 

Despite most oncologists not offering any specific nutritional advice (except to ensure that you do not lose too much weight to put the chemo treatment at risk), I cannot believe it is that hard to agree that it is plausible that nutrition has a role to play in not only increasing susceptibility to cancer but  also as a strategy to helping increase survival. Have a look at this disgraceful advert put out by Cancer Research funded by the hard work of millions who donate in the hope for a breakthrough. I cannot work out how to add a link but have a look at the Cancer Research Facebook post on 22nd June 2015 at 20.00 hours.

I always like to refer to the book The Cancer Survivor’s Bible by Jonathan Chamberlain to sense check things I read elsewhere. His take on B17 (also known as laetrile) is that the controversy surrounding it is bizarre given this is essentially a substance found in concentrated form in apricot kernels and almonds but also a wide range of other foods and plants, mainly edible. I would suggest it is beyond bizarre and more in the realms of sinister. Ralph Moss covers the story of the suppression of research supporting the use of laetrile in his book The Cancer Industry.

I have started eating crushed apricot kernels (it is important you source them from a reliable supplier - I use Himalayan apricot kernels from creative nature ), simply as a nutritional supplement. I am crushing them and mixing them in water to swallow in one (as they are utterly disgusting and incredibly bitter). I have started on 5 a day and am working my way up to get to as close to 30 a day as I can but doses for other people with cancer can be a lot higher. It is also a supplement that does not work alone and requires Vitamin A and Zinc and enzymes (I think I have finally found the right pancreatic enzymes to support this therapy and will write about it soon when I have started to take them). I also have B17 in pill form, which if I need to be more aggressive at any point in the future I will consider starting. As it is I have quite a lot going on with dendritic cell, exercise, diet and other supplementation - I need to hold some approaches back in event I need a boost further down the line.  Again in my view, it is unlikely to do any harm and so why would I not try it in light of the many people who strongly support it’s potential as part of an anti cancer approach. 

The main therapies that stand out as those which have been tried and tested and are advocated by cancer survivors and integrative therapists include: B17; Low Dose Naltroxate (which I am also taking and cover in this blog also below); the budwig protocol (quark and flaxseed oil) - I tried this during chemo but could not stomach the mixture, I would return to this at a later date if I need a new approach and not mix with chemo when it is hard to find even normal food appetising; cannabis oil (I have researched this and again it is something I would certainly contemplate if of course it were legal as it is in California where there are oncologists who actually prescribe it); vitamin C in high doses (I am taking liquid vitamin C starting only after I had finished chemotherapy but I know people do take it in conjunction with it and I had some Vit C intravenously in Germany.) Finally  vitamin D supplementation. 

When I told my oncologist that I was researching dendritic cell therapy and I wanted to know what his views on it were and he suggested I try and see (privately) a Professor (Dalglish) who is a leader in immunotherapies and has been a supporter of dendritic cell therapy for many years. I was lucky to see Prof. Dalglish who was incredibly open minded. I had wanted his views on DC therapy but also advice on some of the other supplements I was taking or considering. He knew the team in Germany well and had visited the laboratory there (which the team showed me around also) and was positive about their work which gave me the confidence to pursue this treatment. Apart from commenting on the other measures I was taking he advised two things. 1) to get my Vitamin D tested and 2) to consider Low Dose Naltroxate

Vitamin D - why?  There is plenty of research which shows the benefits of vitamin D both in the prevention and the treatment of cancer. Recent research indicates that human daily requirements for Vit D may be up to 10 times more than what is currently recommended. There is also growing evidence that many of us are deficient in this essential vitamin. Professor Dalglish was certainly clear that Vitamin D is so intrinsic to the correct functioning of cells that patients should first and foremost correct any deficiency. There are a number of factors that have contributed to growing deficiency of Vit D including use of sun creams at all hours over the whole body and the changes to the food we eat. It is not only cancer that increases with Vit D deficiency but many studies indicate mortality from all causes is significantly higher if you are deficient. Prof Dalglish suggested I have my Vit D tested and said that he is surprised by how many people you would think would not be deficient who are. I would have put myself in that category.  My test came back and I was between deficient and normal (although according to the GP surgery I fell within normal ranges but from what I have read about what is sufficient in literature about cancer I was in fact within the deficient/normal range). I had started supplementing with liquid Vit D a good few weeks before the test and so imagine that I was well within the deficient range a few months ago - which I am sure would not have surprised Prof Dalglish who sees Vit D deficiency in so many of his patients. I continue to address this with a Vit D supplement and will spend as much time as I can in the sun (safely) over the summer. 

What I did learn as I researched this was that while some Vit D is created within the skins outer layer much of it sits on the surface of the skin and it takes about 48 hours to penetrate. ‘Being water soluble, vitamin D is broken down by soap and washed away in your power shower’. ‘Trying to get sun exposure behind glass won’t work either since the Vit-D making UVB wave length is disrupted. UVA gets through however, and that’s not good news’. pg 211 P.Day ‘Cancer Why we are still dying to know the truth’

Now Low Dose Naltroxate is another funny therapy. Funny in that there is an impressive science behind it and yet it remains elusive and certainly not considered a standard therapy. Professor Dalglish has himself examined the research behind it as well as treated patients who have taken this and he believes this is a substance which should be considered within the cancer arsenal. He suggested that I start this and offered to write me a prescription if I could not get one from elsewhere. There is a way to get this low cost drug within the UK but it is not the most straight forward route and I am at a loss as to why more is not known about this and why it is so hard to acquire it. Naltroxate is a drug which has been approved by the drug authorities but originally to help wean addicts off heroin. In 1985 however a New York City doctor (Bernard Bihari) discovered that at very low doses this drug had a very powerful stimulating effect on the immune system. 

‘In addition to stabilising AIDs, he found that this treatment also had a powerful, beneficial impact on many cancers including cancers such as neuroblastoma, multiple myeloma and pancreatic cancer which are normally considered incurable’ 

Interestingly, this treatment has the effect not of curing cancer but, in many cases where all other treatments have failed, of stopping it in its tracks. This is not 100% assured but seems to be a very high frequency effect. However LDN needs to be taken permanently as the cancer will start growing again when the LDN is discontinued.

It is safe, cheap and has no side effects….’

Johnathan Chamberlain pg 397 The Cancer Survivors Bible. 

I now take 4.5ml a day, every evening after 9pm. In order to acquire it I had to contact a pharmacy in Glasgow which supplies it (Dixons Pharmacy www.dicksonchemist.co.uk). They sent me some forms by email which I had to complete giving details of myself and confirming my diagnosis (a copy of a letter from my oncologist to my GP). I returned these and was then contacted by a Doctor for a private consultation by phone (this cost about £35) who advised me on how to take it and confirmed some details. He then prescribed LDN for me and I purchased this via the pharmacy. It costs me £18 for a months supply. Why on earth should it be so difficult for me to access what appears to be a low cost drug with an exciting scientific evidence base? Could it be that it is out of patent. A rather boring low cost drug that will not make anyone very rich. Cancer Research - where are you? I tracked down a book which charts the history of Low Dose Naltroxate and examines why this has not attracted more attention from the medical community. (The Promise of Low Dose Naltrexone Therapy: Potential Benefits in Cancer By Elaine A. Moore, Samantha Wilkinson)

‘The low cost of generic naltrexone is not favourable to the profits of drug manufacturers who might otherwise implement clinical trials for its use in conditions for which expensive drugs are already available’. pg 155 

Also check out www.lowdoesnaltroxate.og. 

So these are some more strands from Louise’s personal survival strategy.

Ella’s Birth - Joy and Trauma

I think it is time I talked about the other significant emotional and physical event in my past, which was full of joy, shock and pain all at once. Ella’s birth. She was 19 two days ago and so it seems appropriate I reflect on it now. Her birth marked a dramatic change in the course of my life, not only personally but professionally. It caused an immediate physical trauma and for a period an emotional and psychological one (for Rupert also). 

I was 24 when I found out I was pregnant with her. My older sister Clare had just given birth to her first child and I had been to London to visit my new niece. During this visit my sister said something like, ‘your turn next’. We had only recently returned from our honeymoon, we had also only recently met (given that I had been living in Boston for the previous year) and so children were something we were definitely intending to have, just not then. So I gave lots of reasons as to why we would be waiting a year or two at least. We talked about her pregnancy a bit and the birth and in the course of the conversation she dropped in that she had gone off coffee and alcohol during the pregnancy. 

Later that day,  at Victoria Station on my way home to Brighton, I had an irrational and sudden desire for some Burger King chips. As I sat on the train home stuffing these, animal like, into my mouth I paused for thought, recognising that my behaviour was not normal. I didn't particularly like Burger King chips, but these ones tasted like heaven. I had a nagging thought that would not go away. It related to Clare’s comment about going off coffee. I had recently not been enjoying my morning coffee and my taste for alcohol was not what it usually was. 

I started doing my maths. My cycle was always quite long and could vary by a few days either way. It was perhaps on the longer side this month. Then there was the small belly I had noticed which had made doing up my trousers quite tricky. I had taken this to be post honeymoon weight gain and had begun morning sit ups to try and tame the new fat. Having been pregnant 4 times now, these signs are all so obvious, but I had honestly not spent a lot of time considering pregnancy and had therefore no clue whatsoever what was a pregnancy sign. But on that train that night, I started putting them all together and considering any other strange changes. 

One stood out. My smell was heightened. I had recently become aware of smells I would not normally notice and one particular recent daily incident stood out as an example of this. At the time I was commuting to London, where I worked as a ‘Tutorial Fellow’ at the London School of Economics (basically a dogs body to the lecturers and researchers). I would catch the same commuter train every morning and sit in the same, Harry Potter like compartment (these still existed on the London to Brighton line then). I caught the train from Brighton Station, and at Preston Park, the first stop, the same man would get on in my compartment. This is what happens with commuter trains, people are creatures of habit and once they have found their favoured seat and carriage they covet it as if they owned the rights to that particular position. God forbid anyone else took your seat. The regular commuters unconsciously respected the natural order, but occasionally newbies would board the train and muck the whole system up. An occurrence which definitely signalled a bad start to the day. Nearly as bad as standing on a London underground platform, carefully positioned in a place you have carefully calculated will result in you being immediately in front of the doors when the train stops and the driver pulling the train up a little tighter forward or not quite as far up as usual leaving you facing a sheet of metal and window with the doors a foot or so to your right or left and you guaranteed a journey standing in close encounter with the armpits of fellow commuters. 

Anyway. On my normal commuter train I had begun to notice that this particular man smelt incredibly strongly of alcohol. I could almost see alcohol vapour as he exhaled. I have a face which I apparently don when I disapprove of something or see something that I don’t like. Rupert calls it my ‘camel pee under the nose’ face. I somehow scrunch my nose up in a sign of disgust or disapproval. Well, as this man sat himself down next to me there he would have whispered in my ear ‘there seems to be quite a bit of camel pee around’ had he been with me. So after a few days of this I had moved to the adjacent carriage. 

As I considered these recent subtle changes it crossed my mind, with some horror I might add, that there could be a chance that I was maybe pregnant. I passed a late night pharmacy on the way home from the station and bought a pregnancy test. Rupert had also been out that night but at the pub with friends. I waited until he arrived home to do the test. We had not even mentioned the word pregnancy for a long time, if ever, and then suddenly he was confronted by me holding a pregnancy test. He had only been in the flat for a few minutes before I disappeared into the toilet. The blue line appeared almost immediately. I still remember the shock. It was just so out of the blue, not part of our medium term considerations at all. Funny the detail you remember  about certain key moments in your life. I went and lay on our sofa in foetal position, honestly speechless, and started watching Cracker with Robbie Coltrane. Every tummy gurgle became laden with meaning. I had something inside me! I have to admit I was horrified at the thought. The next day I went to a book shop and flicked through some pregnancy books, still very numb. There was a very graphic, week by week book which I eventually bought and had by my bed to study as the weeks passed, but that day I was only up to flicking through books. I got to the section on week 40 and the birth and tears began to roll down my cheeks. Not sadness just shock and realisation. That would happen to me. 

In the end my pregnancy with Ella could not have happened at a better time. I was young and fit. We may otherwise have hung around for the perfect time, which so often never comes. This had forced our hand and we began our family then so I have always been a relatively young mother. Thank goodness because, rather than being a 44 year old with advanced cancer, and very young children, I am a 44 year old with advanced cancer and children who can dress and feed themselves, sleep through the night, almost get their school bags ready unaided and even help around the house and my oldest has almost reversed the roles and is now mothering me.

The pregnancy was pretty straight forward, I grew enormous. Rupert did all the cooking, shopping and general housework as I spent long periods eating magnum ice creams on the sofa and being generally spoilt (oh how this changes once you have your second plus pregnancy). The complications began only at the very end. Ella simply did not want to budge. We did not know if she was a girl or a boy (and never did for any of our children - nothing matches the magic of that moment when you find out). She was due on June 20th and I had become fixated by this date. After 10 days overdue I was under some pressure to be induced. I resisted as much as I could (I knew little about childbirth at the time and imagined that you just turned up at hospital and the midwives or doctors would deliver the baby - not recognising that it was in fact me who would deliver the baby and me who should be in control). 

On 2nd July I was booked for an induction. A few days before we had tried hot curries, lots of walking  up hills and castor oil, to no effect. Then I had acupuncture. I was sad that I would not spontaneously go into labour, it felt so sterile to simply turn up at an appointed time. That last night, July 1st 1996, Rupert and I played jenga. It was a funny old evening knowing we would never be alone as a couple again, this was the end of what had been a very short era and life was to change. We had the bag packed. We went to bed quite late and only a couple of hours later my waters broke. I simply bounded out of bed. It was too exciting for words, I had gone into labour and would not need inducing. An older more knowledgable me would have simply hunkered down and stayed at home as long as possible, even considered a home delivery as I had with William, our third. But at that time I wanted to get to the hospital as soon as possible (influenced by too many mad dashes to the hospital in films and TV programmes). I was the first of my friends to have a baby and so had really no frame of reference, I had no experiences to learn from and I really had read very little. 

At the hospital I dilated very slowly. July 2nd 1996 was a hot day. I was in a room high up in the Tower at the Royal Sussex, where so many Brighton babies are born. How many albums are there of those moments in labour and the view across Brighton from the labour room? After 11 hours and almost no progression, I felt in great pain and was quite distressed. Ella was posterior, which made things particularly uncomfortable. I had no really good tactics to manage this and was simply unprepared. The midwives were lovely, but during the course of the labour I went through 3 working shifts (the end of one and start of another with a full shift in the middle). I agreed to an epidural.

The epidural was not well sited. I was put on syntocinon to help progress the labour. The epidural was effective for periods but would then the effects seemed to fade and the anaesthetist was called frequently to keep topping it up. In the internal inquiry almost 2 years later, the review of my notes showed that I would have to have weighed something like 12 stone given the number of top ups I had over the period for the level to be safe, but I had not been recently weighed and it is unlikely I weighed anywhere near this. After another few hours it was decided that I was not progressing, I was stuck at 4 cms, and that a c-section would be the next step. By this time it was very very early on the morning of 3rd. The anaesthetist came to top me up again and decided to stick with the same epidural for the operation. Rupert asked if this would be OK given it had not been very effective over the previous day, but she was adamant that the dose would be significant and it was OK. 

I was wheeled into theatre, with Rupert accompanying. My blood pressure dropped (which can happen after so long with an epidural) and my teeth began to chatter. They removed the pillow from my head and my neck ached as I had been in one position for such a long time. The team in theatre (it is now around 1 or 2 in the morning) were pretty silent. No one really talked to us. The anaesthetist tested my stomach with ice (and she said later  performed a pinch test - i.e. pinch the skin to see if I could feel anything) to check that the extra dose through the epidural was working. I could feel the ice first time she asked (indicating the epidural was not effective yet), and remember her looking slightly impatient. She claimed later to have done the pinch test and that indicated all was OK. But the moment the surgeon started cutting through the layers of my stomach it was clear that the epidural was not effective. I could feel it. The surgeon later claimed that he had cut through the outer layers and it was not until he had got through these that I could feel it.

The ensuing scene was one you could imagine seeing in a dramatic episode of Casualty or Holby City or possibly a scene of battlefield surgery. From the moment I felt the knife I started shouting ‘I can feel the knife, I can feel the knife’. Lots of things happened at once. The surgeon (who later said he had lost confidence in the anaesthetist), then ordered that Rupert leave the theatre as they would have to do a general anaesthetic. In the meantime I am also shouting that my legs are falling off the table. I remember repeating it, and no one seemed to be talking to me. Again later, the midwife who was in theatre, and at the leg end of my body, described that my legs were moving and that she was having to hold them in place. I have often imagined what was actually going on and think it was related to the anaesthetic which worked in some patches and not others which meant that I did not have total control of my legs. The pain in my stomach was causing an involuntary movement in my legs. I think I must have been trying to do what you would do if you were punched in the stomach - and draw my legs to my stomach. But being not in full control of them it felt, from where I  was, as if they were falling off the table. 

They began preparing for surgery (all this time I am open and bleeding) and start putting a mask over my face. This was the only time I actually thought I might die. I am very very rarely sick, but I at that moment felt I was going to be sick and seeing the mask descending on my face I thought, this is it, I know being sick under anaesthetic is not good and I am going to be sick. So amidst all the other things I was shouting, I began repeating ‘I’m going to be sick, I’m going to be sick’. In fact it was oxygen they were going to administer through the mask, but no one was explaining to me what was going on and I had thought it was the anaesthetic to knock me out. At that point, again from statements after as part of the internal inquiry, we learnt that, as I was already part cut open they were not able to intubate me for the general anaesthetic and so the surgeon had no choice but to proceed until the baby and placenta were out. They called Rupert back in. He had been weeping outside the door, no idea what was going on, but he could hear me. Luckily he was called back in, although it was distressing for him and he suffered mild PTD for a while after, grinding his teeth at night, at least I had another witness to it. They had to simply forge ahead. The surgeon’s number two had to physically hold my stomach apart. Again my muscles were responding to the pain and the medication had not resulted in the relaxation that would normally enable an easy delivery. 

Ella was 9.1Ibs, so not a small baby and I am 5.3ft. This probably made the task of getting her out longer. All the time I am still shouting that my legs are falling off the table, no one is talking, presumably themselves in some shock, Rupert is at my head when they eventually deliver her. I had a moment of consciousness when they passed her to Rupert. We had been convinced she would be a boy so to have a girl was amazing and she seemed so big. Rupert held her by my head so that I could see her. I remember saying ‘She’s so big, she’s so big!’ and then, once the placenta was out, I lost consciousness as at this point they give me medication they could not give while Ella was still attached. I missed the next hour or so. From the moment they started cutting into me up to Ella’s birth, it had taken 26 minutes. Over the next few minutes they began the job of sewing me up. They chose to do this by removing my womb and placing in on my stomach to sew it up, which we were told, is apparently something they do sometimes. Rupert saw all of this and thought I was having a hystorectomy. I was during this time, sick in my mask, but with no one at my head except Rupert, it was he who had to call to them that I was being sick. As soon as they pumped me with whatever it was that made me lose consciousness, from Rupert’s perspective, I simply rolled my eyes and as far as he knew, could have been dead. 

They finished sewing me up and rolled me into a recovery room. Rupert, who by this time had been up for over 36 hours with a couple of hours of sleep in the middle before I went into labour, had to work out how to dress Ella. He was distressed and in total shock. He had not been involved in packing the baby bag, he had no idea what was in it and a midwife helped dress her before they brought her to me. Luckily someone helped make sure she latched on early on, which helped breastfeeding as I was in no fit state to work out what to do. I was semi delirious when I first woke up and remember calling the midwife with my call button as I thought Ella had 6 fingers. Funny now, but shows how out of it I was at that time. 

It was very hard for us in the early days to know how to respond to the congratulations of family and friends. What had happened was unspeakable and we were in no state to repeat it, we had not processed it ourselves and this took us many many months. It was difficult also to be part of conversations where other new mothers talked about the various difficulties and complications of their experiences. I simply stayed quiet, mine was not a difficult birth it was an operation that had gone wrong, which happened to be for the birth of my child. It was not tea time conversation. Nor did I have friends who had even been pregnant. I remember for many years actually feeling lonely in this regard, I need to discuss it but it needed to be at the right time with someone who would help me relive it. Rupert and I did not actually discuss the details and emotions we had felt until a whole year later (on Ella’s first birthday). 

It took us a long time to get any kind of acknowledgement that anything had in fact gone wrong, and 2 years before there was an inquiry of any kind. Ella was fit and healthy and really so was I, except for severe anaemia from the massive blood loss and bruised insides and stomach. We were not out to sue the NHS. At that time they were under such constant pressure and concern that this might happen, that they responded in a way that made an early and open examination of what went wrong almost impossible. Things have changed dramatically over the past 19 years even though all is not perfect, but the defensive medicine and fear of acknowledging mistakes makes for little opportunity to learn and improve. Reflection of clinical errors and incidents in an open and safe manner are the only way that  these might be avoided in the future.  

In practice, there were a number of unfortunate events which together resulted in this outcome. No one deliberately wounded me but their fear of being sued and of the behaviour within their own professional hierarchical systems was not conducive to an open and inquisitive review of why this happened. It amazed me at the time that, had we not pushed, it was not clear that anything at all would changed as a consequence of this. I probed once and was told that they did have an internal system of logging serious clinical incidents. Aha! I said, then you admit there was an incident, and so in your view what was it. As it was mine was not initially logged as the indicator that would have been used to trigger this system was the amount of blood loss. If blood loss was over 1000ml then this would constitute a clinical incident but in my case, apparently, I had lost 950mls. Hmmm….does anyone smell a rat. How would you estimate a loss of 950mls compared with 1000mls when it is all over the floor? 

The first response to a long letter Rupert wrote to the Trust received a response which began 

‘Dear Mr and Mrs Howes, We are sorry that your birth experience was not what you had hoped for…’. I think they were mixing up a birth and an operation that went wrong. Do you think they would have said that had I been having my appendix out….’I am very sorry your appendectomy was not what you were hoping for…’. 

With the help of a group called the Association for Improvements in Maternity Services (AIMS www.aims.org.uk/) we slowly and systematically gathered the evidence, worked out how the system worked and actually built relationships with the hospital, which partly helped with the discussions as I think they began to trust we were there to find the truth to avoid it happening it again and for our own ‘closure’ as they say in America, and not because we were going to sue them. There was eventually an internal inquiry and there came a point after which we felt all that could have been done and learnt had been. I was by then pregnant with Tom and focused hard during his pregnancy to learn as much about managing my own labour through breathing and other techniques so that I could avoid unnecessary intervention and would not need to resort to other forms of pain relief (I do not count TENS machines or gas and air in this). Tom’s normal birth almost 2 years later exactly was a great healer. I avoided a c-section. I managed a normal delivery supported by a brilliant team of midwives and we had gone as far as we could in accepting and moving forward from Ella’s birth. 

It was this experience however that then framed my future career, professionally and as a local activist and advocate for improvements in the quality of maternity services. I joined the group AIMS, which had helped me so much, and was their Secretary for a few years. AIMS was established in the 1960s and initially advocated to end routine pubic shaving and routine episiotomy, entirely unevidenced based, painful and unnecessary interventions which women for decades were subjected to. It is also in large part thanks to their efforts that fathers were eventually allowed into the labour room and women were not forced to deliver lying on their backs. 

I then joined and ultimately Chaired the local maternity services liaison committee (MSLC), which is a statutory group established to bring users and service providers together to improve local services.  After about 10 years in these roles I joined the then Primary Care Trust as a Non Executive Director, and through this hope I played a part in efforts to improve local services. Brighton and Hove at the time of William, my thirds birth, had one of the highest home birth rates in the country. I am less in touch with services locally now but it was the focus of a good part of my life. Alongside this I began a PhD. I was at that time trained as a demographer. Demographers are concerned with population and what makes it change, fertility, mortality and migration. My interest has always been in reproductive health, safe pregnancy and childbirth. In my Phd I focused on Quality of Care in Maternity Services, in this case in low resources settings (urban slums in India) - but the principles remain the same whichever part of the world you live in. And so began my career which I continue today working to support improvements in maternal and newborn survival in parts of the world where women and babies continue to die at rates and in ways we experienced over 100 years ago. Preventable deaths during pregnancy and childbirth are an outrage in the 21st century. I pinpoint the passion for this work from Ella’s birth. It opened my eyes and forced me to become my own advocate to start with and ultimately an activist for others. During this time I learned everything I could about what constitutes high quality care, why care falls below certain standards and what can be done to improve this. More about this in a later blog.

It is hard to believe it is 19 years since this all happened. We were so thankful that at no point did Ella seem even the slightest bit distressed, she was calm and together, not a blip in her heart rate, just as she is today. And through what could have been (and was to an extent) a tragedy came a passion and a drive which has consumed me ever since. I see this cancer as another such a moment. As with Ella, I knew very little about the politics and reality of care provision that could result in the experience we had. With my situation now my eyes are being opened into what I am certain is not an environment which is delivering good access to treatments and care options to people with advanced cancers. With poor maternity care, which many have experienced, women are often unable to engage actively to stimulate improvements as they are grappling with the challenges of a new baby. With advanced cancer, people can be too ill, too scared and too confused to challenge what is on offer and not around long enough to keep the pressure up for sufficient time to make the difference. We need groups like cancer research to take on some of this challenge and really advocate for patients. And we need the voices of patients themselves and their families to rise up and rattle some cages. Something needs to change - I am working my way to understanding the what and how and identifying individuals and groups who came to this conclusion a long time before my own epiphany.

PET scans, radiation and old age

On 23rd June, a Tuesday, I had my first PET scan. In fact it was a PET/CT scan, which I think means they do both at the same time so they can compare and contrast. Each one gives a slightly different perspective and given the cancer in my liver is being a bit mysterious, the plan is to get as good a picture of what is going on as possible so that there is a reliable baseline with which to determine change over time.

It is being mysterious in that from a plain CT scan it looks the same as it did before the chemo started but that over this period my liver bloods have returned to pretty much normal. So what is it doing? It is there but not doing much? I know this is what they call stable, but it is still a strange concept. If cancer is essentially cells dividing out of control, does this means that over the period of my chemo my cancer has sort of gone to sleep? It is just sitting there. The radiologist who interprets the scans sounded pretty certain that it was not scar tissue (ie the remnants of what was cancer), which leaves sleeping cancer? 

If it is sleeping, was it the chemo that sent it to sleep or the radical diet change (no diary for starters and many powerful juices and absolutely no meat or sugar - enough to send many things to sleep alone). Have the supplements, yoga and general calm zen like state I attempt to live in sent it to sleep? Now of course I am on hormones and I have had the first batch of the dendritic cell vaccine. So really I do not know what is going on now. I think about it a lot. Can I feel my liver or can’t I? If I can is that a good thing (cell death causing inflammation and general discomfort) or a bad thing (cancer waking up and slowing growing, liver inflaming again)? Dr Martin, from the German Clinic, told me that I may feel some discomfort after the vaccine exactly because when cancer cells die it causes inflammation. So then when my liver is uncomfortable I wonder if it is the right sort of uncomfortable and maybe I have just pulled a muscle or am simply imagining the whole thing. 

So the PET/CT scan is going to tell me something, but it was taken only a few days after the vaccine so I am not sure it will say very much about the impact of that yet. It will helpfully provide a good baseline for this also, at the very least. I will find out the results on 7th. I honestly feel well, tired sometimes and not quite as fighting fit as the normal me, but I hope this is simply the effect of the 16 weeks of chemo rather than any cancer related side effect. 

I am preparing myself for what it might say. Given that I have only a lay persons understanding of what a PET scan can do - my expectation is that it will essentially have lit up any active cancer and so when compared with the CT scan, which shows mass, it will be able to show how much of the cancer is active vs sleeping. It was a whole body scan so I presume it will also confirm or not whether there are any other cheeky bits of cancer lurking in another part of my body. For the majority of people with advanced breast cancer it comes back first in their bones or lungs, only about 10% get it in their liver first as usually this is somewhere it progresses to. I am not sure if getting it in the liver first and only in the liver is something to be relatively pleased with or totally the opposite. The optimists view would be that I have one difficult front to fight on rather than 2 or 3. The liver just sounds so necessary to living. I have had some very helpful advice from people about all sorts of interesting surgical and other interventions aimed at removing tumors from the liver, unfortunately mine is what is described as ‘dispersed’ which means no big tumor but lots and lots of tiny/little ones. Again the optimist would think that surely this would represent a less formidable opponent. Lots of annoying little tumors, alone and exposed on the battle field. They seem to have been pretty effective at holding their ground to date, but I see this as a longer term war. I imagined lots of gurgling and screeching as I lay there having hyperthermia before the dendritic cell vaccine (despite my intention to love my cancer and treat it as rogue cells, like an out of control teenager). We will see what is really going on soon. 

The PET/CT scan involved semi isolation for much of the day due to the radio active material they injected into me to light up the cancer cells. The whole process took just over 2 hours. The first hour, after form filling, involved being injected with the special material, in a room isolated from others. The person who injected me came into the room in a special white coat with the vial protected in a steel casing and then that sat in another special casing. Once injected I was left for an hour for the material to be absorbed around my body. I was not allowed to read or text etc, as apparently as this means using your eye muscles which can confuse the scan pictures of the brain (or something like that). So I lay there for an hour and switched on one of my meditation downloads. These seem to send me to sleep in about 3 seconds flat so I never really do meditation I just snooze. After an hour I was taken to the scan room, another polo shaped machine, like the CT scan machine but longer. I had to lie super still for about 40 minutes as they moved me slowly through the polo shaped tunnel. I think they were taking thousands of cross-sectional pictures so that they can construct a 3D image. It is more difficult to fall asleep during this sort of scan. Just because the CT scan could only see the cancer in the liver, what if this one finds it somewhere else? What if it is in my brain? Maybe that explains my cotton wool memory at the moment? 

I do not think about this much, but at that moment it is difficult not to consider this as one of a number of potential results. For the rest of the day I had to stay away from young children and avoid touching anyone. My friend Kathy drove me to the appointment and to protect her from my rays I had to sit in the back of the car on the way home, so she really did look like a taxi driver. Then I could not touch or hug the kids until the end of the day and I had to wee frequently, so that the radioactive material did not stay pooling in my bladder for too long. I am told that despite all these precautions (for everyone else) the scan is no where near as detrimental to my health as chemotherapy ‘for example’. Great. 

I am now in France for a weeks break with my husband. My last 3 day mini break was a break for me but not for him as he was working. This is a little holiday just for us. I am not sure we have had a holiday alone together, bar a few weekends here or there, since Ella was 6 months old. It is beautifully hot, the crickets chirp at night and the birds in the day and I am surrrounded by the gentle buzzing of honey bees and flies. I have been massacred by mosquitos, mainly at night when they dive bomb every piece of exposed flesh. I have bites on my hands and fingers, toes and ankles and all over my head, neck face and ears. I bought some very expensive, no nasty chemical, mosquito repellent. This makes me smell of eau de citronella or eucalyptus, I can’t tell which and no matter how much I plaster over me, seems to be no deterrent at all. My hair is coming through and I have a soft sheen across my head. It is still not quite ready for an outing in public but it is getting there. This date, I fear, has been delayed as with all the pock marks and red spots from the mossy bites I look rather like an escaped convict. 

I have slept, gardened, watched Harry Potter (love Harry Potter), read, progressed with my knitting (very slowly) and done a good bit of colouring in. Since having the kids these sorts of holidays have simply not happened. Not that I would exchange having the kids of course but holidays since having them are less holiday for parents. This holiday feels rather luxurious as we can do whatever we want, whenever we want. Which has actually meant doing nothing very much. 

Rupert and I met when I was just 23 and he was nearly 31. We met, of all the strange places, at the Earls Court Boat Show on 15th January 1994. I was working as a volunteer for a friend who was about to undertake a circumnavigation of the globe, pedal powered. Rupert was a friend of his girlfriend and he had come to show support. Rupert’s brother, who designed Ridgeback Bikes, had donated the bicycles (for the land) and the gear for the pedal powered boat for the ocean sections of the route. I had spent the day showing people around the specially made boat, and I encouraged people to sponsor the team and in return they could get their name painted onto the hull of the boat. As it worked out Rupert and my names were added to the hull, and painted right next to each other. 

We were engaged only a few weeks later. I had won a scholarship to go to Harvard and so we set the date for our wedding the September I got back. We were married almost 20 years ago, on 2nd September 1995 and Ella came along rather unexpectedly soon after that, a respectable 10 months (July 1996). All in all Rupert and I had a bit of a whirlwind romance, we lived apart for the year before we married as I was in Boston and he was in London and then Ella came along shortly followed by Tom, William and then Ned. Ella was 6 when Ned was born and those early years were definitely pretty hairy and sleep deprived even if they were filled with love and joy. It took me a while to accept that a holiday would never feel quite like a holiday again, until more recently as the kids have got older and themselves enjoy a lie in. They can help clear the table, make their beds, run around the supermarket in search of items of shopping, and generally feed and amuse themselves allowing us time to attempt to read a book or have a snooze under a tree. 

This little holiday has the memory of time before children. The children are well looked after in Brighton, with friends helping out and Ella home from her trip to Thailand - the tail end of what would have been her long gap year adventure had she not come home to look after me. The big elephant in the room, of course, is that it feels both normal, as if I have returned to some time in my life that was long gone, but not normal at all. 

My strategy is to not think far beyond the now, but little thoughts creep in. How many times might I do this again? We have loved it so much we discuss repeating it this time next year. I know that always marching forward, and having concrete goals is good to aim for but trying to live life only in the now and not plan for the future is so alien to me. Think of the number of times a day in normal life you might say ‘One day we should think about doing x y or z’; ‘next year it would be good to…’. 

Most of me fiercely believes that I can both heal myself supported by the right treatments and manage the cancer for a very long time. But then I wonder if perhaps I am deluded. Feeling so well, with no pain or obvious signs of cancer, feeling the sun on my face, listening to the birds, it is just surreal to think that it might end. I have always had an image of me as an old lady.  I simply can’t believe that I won’t be an old lady. In my old version of my future I would outlive Rupert, who is already nearly 8 years older than me and a man, so technically I had expected a good few years as a widow. I would be living with or near my best friend, and we would meet daily to eat scones and cream and drink cups of tea.

We would bicker frequently and out do each other with stories of the prowess of our various children and grandchildren. I would follow a few mindless soap operas and read lots of books and I would most definitely knit. Of course by then I would be an expert knitter and my grandchildren would be festooned by many remarkable items knitted by Granny until they became old enough to reject them. I would meet my sisters for lunch frequently and possibly stay with them occasionally but our sibling antics would continue. I would go on long weekends to stay with my other best friends around the country and further afield (Spain and New Zealand). I would teach my grandchildren tactics for life, including how to play a good board game. My father once described our household (that is mine as a child) as one which was often difficult to manage as it was filled with so many Generals. All of us powerful characters and fiercely competitive. Even now in my own household the children know that if we sit down to play a family game, the intention is to win..... But crying if you lose is absolutely forbidden. And then, as I learnt from my own father, one day the children suddenly become more adept and able than the parent and the tables are reversed and it is they who finally get a chance to whip us parents at last.

Who knows, maybe I will manage this beast, maybe dendritic cell will result in a complete response, maybe I will move from treatment to treatment eking out every month and year possible, maybe there will be a magnificent break through. Thinking back 10 years, our knowledge of cancer has taken leaps forward, the treatments are slow in coming, but with a bit of pressure and focus might this change?  You may have read the many reports that came out of the recent annual conference where scientists report their findings on potential cancer treatments. The big take away message was that immunotherapy offered a paradigm shift in how we manage cancer. Dendritic cell therapy is an immunotherapy, based on the potential of harnessing the power of your own immune system to fight cancer. The findings reported were mainly for melanoma - but the principle remains for cancers generally. Let’s see how long this takes to trickle through to treatments for the wider population and other cancers. Imagine that - were it to be proved that all along the answer was partly already within us, it just needs a little help but relies on a strong immune system - consider how this contrasts with the decades of treatment that has and still does rely on a treatment that actively destroys your immune system. 

Fundraising update - £64,000 and rising! Treatment for now and treatment options for the future

I have just lost the blog I wrote which gave an update on the fundraising aaaaaaaah. So this is going to be a shortened version of it. We have now passed £64,000! This is beyond our original target, which is absolutely amazing. I have been able to go to Germany and have the first of the five sessions which make up the dendritic cell therapy I am having thanks to the generosity of everyone who has given and fundraised. (see the last 2 blog posts)

When I first realised that I could not sit and passively work my way through the list of treatments currently on offer for people with advanced cancer in the UK I started the research which led me to where I am today. What became clear was that for advanced cancer patients there are options available, alternative therapies, cutting edge approaches, trials (which you must pay to join) and drugs still unavailable in the UK - all of which require money and not insignificant amounts of it. I could not sit and wait. I needed to start fundraising, not only to access the treatment in Germany, but to be prepared for any relapse. And so in early April ‘Cancer is Pants’ was born, around our kitchen table with Ella, my best friend Sophie and our friend and expert campaigner Ellie. 

We decided on an initial target of £50,000 as this is what I needed for the treatment in Germany. We thought that although it was an ambitious target, it might just be possible….. And we made it!

Hitting the £50K mark and exceeding it has taken us beyond the next 4 months into thinking about next year. It has opened doors of possibility and allows us to think about the choices available to me when and if I have a relapse. Assuming that if this should happen we would not have time to fund raise the plan is to continue fundraising beyond the cost of the current treatment. Having funds gives me the option to access whatever is the best treatment available. Amazing!!!  Thank you!

We could not have imagined the response we would get when we launched the campaign in April. Donations have come in from family, friends, friends of friends, neighbours, work colleagues (and mothers of work colleagues), and so very many strangers. The community just pulled up their up shirt sleeves and came together in an overwhelming show of love and support - practically but also engaging in all sorts of fundraising activities. Cancer is Pants has raised funds through sponsored walks in the Surrey Hills (Kasia and the Donaldsons), sponsored cycle rides (Arthur, Jon, Rueben), cake sales (including Eliana and Mia), staff pants on heads days (Blueberry Nursery), a garden party with auction and portrait sales (Jo, Andy, Harriet and Toby, Jason for portraits and Rory for generous gifts for auction), a mammoth bike ride from Chester to Brighton (the Kemps), local shops and cafes holding special events (The Lavender Rooms, Filfil Cafe and the Newsagent and the Dials), the local schools (BHASVIC, Cardinal Newman, Stanford Infant and Juniors) donating space for the Zumbathon or holding cakes sales and competing for pants on heads photos, a sponsored walk in Norfolk (the Mermagens), a 13K sponsored run (Annie), a sponsored Three Peaks Challenge (Chris), a fundraising football tournament (Hove Park Colts U12, Hove Riverdale U12 and Seagulls U12), a Pilates Bonanza (Cecilia), incredibly generous donations from the 2 funds ‘Hold Amy’s Hand’ and ‘GavAID’ and  from youtubers TobiJizzle and the Sidemen, and a Cancer is Pants Yoga event which was held today (Ellie with Hannah, Hannah and Jess). 

There is one more big fundraiser on the horizon, a massive Zumbathon- 2.30-5.30pm on 4th July at BHASVIC (SATURDAY!!!!) - thanks to Ellie and Federico Bedoya. We would love people to come along and make this event a huge party and celebration of what we have achieved so far so PLEASE do join us and spread the word this week to your friends and family! There will be prizes (including family Go Ape ticket, Co-op vouchers and Body Shop gift basket) for the most dedicated!! You can book online or turn up and pay on the day. If you can’t manage dancing for 3 hours solid you can sit and watch eating some delicious home made cakes- just bring pants, smiles, energy and let’s make a great atmosphere!

https://www.facebook.com/events/1598496623768362/

I am not sure how to thank the many, many people who have donated and raised funds and shown my family and I such love and support. We have decided to hold a thank you tea party. We have booked Exeter Street Hall on Sunday 19th July for a Golden Pants Award tea party between 3.30 and 5.30pm. The Howes family would love to see as many of you there as possible. We will provide tea and some cake but please feel free to bring more. We have some Golden Pants Award certificates to give out and would like a chance to thank you in person. Please come!!

Science not magic…Dendritic Cell Therapy

June 18th 2015

I am now home! I had the vaccine on 16th June. As Dr Martin gave it to me I said ‘Please let it work it’s magic’.  ‘It is not magic’ replied Dr Martin, ‘it is science!’.  They injected 6.3 million dendritic cells into me. Apparently anything above 1 million is OK, but Dr Martin is quite understated so I cannot work out if 6.3 million is good or just OK.

He gave me a dose of interferon with the injection; I think to stimulate my immune system. I was warned I should like to get flu like symptoms a few hours after the vaccine which would last for a few hours. And sure enough about 3 hours afterwards I lay in bed shivering and aching and with a good high temperature. It lasted almost 8 hours – but I was happy as this is what they want to happen. I felt rather black and blue the following day, on which we caught the flight home after my last session of hyperthermia. I will return in July, early September, October and November. Meanwhile I wait and hope they are doing their job.

June 14th 2015

It is Sunday today. I have a day off, that means no treatment. It is a beautiful day so I have spent this morning in the Botanical Garden and at a near by café (drinking green tea of course). Gottingen is a really lovely town. The people are polite and kind and there is so much life. It has a population of about 125,000, a quarter of which are students. 

Kate left on Thursday morning and Teresa arrived that night, she then left this morning and I will soon be joined by Sophie. Spending time with these amazing friends has been a treat. There is definitely general juicing rivalry going on. Ella was the one to beat, not only for size of the juice but for how unpalatable it was. She has had more practice granted, so the playing field has not been even. Kate made a valiant effort, and was particularly harsh over the last dregs which she made me finish almost to the last squelchy, foamy, yucky deposit that collects at the bottom. But I think Teresa wins. I actually threw up a few minutes after her first attempt. It was possibly a case of too much beetroot, but the effect was spectacular. Her confidence was shaken but she persevered.

Since I last wrote I have continued with daily hyperthermia. Then on Friday I had the first dose of the Newcastle Disease Virus. This is given as an infusion (ie mixed with saline and fed through a line in my arm). It is used to help support the dendritic cell therapy. The history of it is fascinating. I am going to copy some of the clinic’s summary about this this virus that was included in the consent form I signed before they administered it.  There is some clunky English by whoever translated it from German. Here is a photo of the vial the virus that went into me came in. 

Tumor Therapy with oncolytic virus Newcastle Disease Virus (NDV)

With regard to the up to know unfavourable results of conventional therapy in the treatment of especially advanced tumours novel therapeutic methods have to be developed. …a promising approach is the treatment with replication selective viruses, also called oncolytic viruses. This approach is also known as virotherapy. The approach to virotherapy in our group is based on the Newcastle Disease Virus (NDV), one of the most promising candidates among the group of oncolytic viruses….NDV is not a pathogen for humans and is harmless causing only mild flu like symptoms or conjunctivitis in the worst cases. NDV replicates efficiently in humans in tumour cells, only leading to the complete destruction of the infected tumor cells within a short time. In clinical studies with NDV carried out so far, significant tumor remissions as well as prolonged survival periods have been observed with a very low rate of observed side effects. …The oncolytic potential of NDV is highly increased by the additional application of local hyperthermia before the administration of NDV, and by vaccination with Dendritic cells afterwards.

I will be given this again on Monday, with more hyperthermia and a drug called Zometa  which is used for osteoporosis and for people with breast cancer in their bones (maybe for all cancers) – but I think it works to harden the bones but has an effect on white cell production and is used to prime the immune system.

I feel very safe here and confident that this therapy is based on good science. Indeed I have been talking with Dr Martin to understand more about the history of the therapies and why they are not more widely recognised  given that results are at least as good as conventional therapies and do not destroy the immune system like chemotherapy does. I will continue to investigate this, as from what I have learned this is a story that needs to be told.

The Scientist Ralph Steinman, received a Noble Prize in 2011 for the Physiology of Medicine for the ‘discovery of the dendritic cell and its role in adaptive immunity’. Not one scientist has received the Nobel prize for chemotherapy.  ‘In 1973, Steinman and Cohn discovered dendritic cells, a previously unknown class of immune cells that constantly formed and retracted their processes. This discovery changed the field of immunology.’  www.nobelprize.org

This is what I have so far pieced together, but do not fear I will find out more. For the first two decades of his research the potential of dendritic cells was not appreciated but by the mid 1990s they attracted growing attention from the scientific community. Ralph Steinman,  was himself diagnosed with Pancreatic Cancer in 2007 and more or less told to go home and that he had probably only a couple of months. He believed that dendritic cells had the potential to fight his tumour so he administered dendritic cell therapy to himself. He survived almost 5 years, which was unheard of for pancreatic cancer (and is pretty rare today). He died 3 days before the prize was announced and I think is the only person ever to have been awarded a noble prize posthumously.  You can read the Nobel Prize Lecture given on behalf of Steinman here: http://www.nobelprize.org/nobel_prizes/medicine/laureates/2011/steinman-lecture.html

The University of Gottingen is one of the best know Universities in the world for science.  A team here undertook a study in the 1990s, comparing outcomes from the treatment of renal cancer (which like pancreatic cancer has limited treatment options) between dendritic cell therapy and the chemotherapy gemcitabine.  The results were impressive with survivorship among those receiving dendritic cell therapy being significantly longer than the other group. The University were naturally very excited about this ground breaking research and published (among other publications) a one off glossy report celebrating and sharing these results.

 From here I am still piecing things together but I understand that these findings attracted research funding from Denmark to the tune of 5 million Deutchmarks but things went wrong when a researcher doing his post doctoral thesis was found to have faked some data in this subsequent study. The reputational impact of this on the University was severe and they were quick to respond, closing down the research which effectively bought the investment in the study of dendritic cell to a close.

Over this period Dr Nesselhaut and Dr Martin took their work to their own private practices in and near Gottingen (Duderstadt) where they set up their own laboratory and continued to focus on this therapy, and after much scrutiny from the relevant health authorities are able to offer this. Mainly it is available only to patients able to pay for it, but there is at least one insurance company (Max Plank) for patients in Germany which will pay for it (presumably because they have looked into the results and are actually interested in outcomes).

Not long ago the University showed renewed interest in partnering with Dr Nesselhaut and Dr Martin to continue research in this field but they could not reach an agreement and the University is no longer pursuing this. 

So this helps explains why these two clinics are located where they are offering this therapy. Why there has been no further major interest in this line of treatment I simply cannot understand. It can only be a commercial decision. The original findings from the study on renal cancer hold. The Nobel Prize winner was certainly not a charlatan. Is this really a case, as many I am coming across, of certain therapies simply not offering sufficiently high financial rewards to be worth the investment in further research necessary for them to become accepted or offered as part of normal practice. Certainly, as I mentioned in the earlier blog, the approach is highly personalised, time consuming and does not produce a vaccine which can be mass produced.

In the meantime there are some uncomfortable truths about existing treatments. I am collecting papers, unfortunately in German and so I will need some help with translation, but one of them is written specifically for German Health Professionals, and is traditionally a very conservative publication. Published in 2005 authors undertook a retrospective analysis of studies which examined outcomes for patients with mestatic breast cancer (aerzteblatt.de) and they concluded that length of survival had not changed in 20 years (Metastasiertes Mammakarzinom: Keine Lebesverlangerung siet 20 Jars). With the introduction of a growing number of more targeted therapies (eg hormonal) since this paper was written this is likely to changed and I  will  investigate and update. (source www.aerzteblatt.de/archiv/48590). The main treatments offered over the period of this review were surgery, chemotherapy and radiotherapy.

Another often quoted paper (The Contribution of Cytotoxic Chemotherapy to 5-year Survival in Adult Malignancies – Clinical Oncology (2004) 16: 549-560) reports findings from a study which examined more than 300,000 patients with different cancers across USA and Australia who all received chemotherapy. The authors wanted to determine what the 5-year survival benefit that could be attributed soley to cytotoxic chemotherapy in adult malignancies. They estimated that the overall contribution of curative and adjuvant cytotoxic chemotherapy (chemotherapy alongside another treatment) to 5-year survival in adults was 2.3% in Australia and 2.1% in USA.

For mestastatic breast cancer specifically they write the following:

In breast cancer, the optimal regimen(s) for cytotoxic chemotherapy in recurrent/mestatic disease are still not define, despite over 30 years of ‘research’ and a plethora of randomised controlled trials (RCTs)  since the original Cooper regimen was published in 1969. There is also no convincing evidence that using regimens with newer and more expensive drugs are any more beneficial than the regimens used in the 1070s.

In addition two systematic reviews of chemotherapy in recurrent or metastatic breast cancer have not been able to show any survival benefit. The absence of quality of life data in many RCTs of cytotoxic chemotherpay has also been noted.

Although guidelines may exist for some uses of palliative cytotoxic chemotherapy, clinicians are not restricted from giving second, third or fourth line palliative chemotherapy in the face of progressive disease and minimal response rates.

As I read this oncologists can basically prescribe chemotherapies as a second and third plus, lines of treatment, even though there is no evidence of response rates worth writing home about. Despite this, therapies like dendritic cell, which have a stronger evidence base than the use of these chemotherapies as second plus line therapies, are not being seriously considered, dare I say it ignored. The science behind DC therapy is good. Their results are impressive compared with many existing treatments. I am still at a loss to understand why there has not been more interest in this.

 Over the last 10 years the science of cancer really has broken open and there is exciting research on a number of fronts, including immunotherapy eg. gene therapy, stem cells. But there is a bottle neck between this research and what is getting through to patients in the form of new treatments. As we understand more about cancer the more complicated the research on treatments becomes.  Clearly every person’s cancer is unique. Personalised treatments would therefore appear a sensible way forward. The treatment I am having is the ultimate personal treatment in that it uses my own immune system. There are no mass market products to be made out of this therapy. Hence no interest from the pharmaceutical industry?

I do understand that pharmaceuticals need to make commercial decisions and that a vaccine that works for a large number of people may be a better longer term solution but what happens to those treatments which do not cut the commercial mustard?  They may work, but what returns would any investment make? Would not Cancer Research and the like not be the groups, with theoretically no commercial interest and patient outcomes their priority, be the type of group to take up the mantle for these types of therapies? From what I have seen on their website they are very conservative with a small ‘c’ and cautious. For those of us with advanced cancer, hell, we are prepared to take a few risks and we need a system that will enable those opportunities. We need to be treated  like adults, able to make decisions about risks of the unknown vs taking no risks at all and dying anyway or having chemotherapy again and again and, oh!, also dying anyway.

 I have often seen statements such as ‘there is not enough evidence to support the use of x y or z’. This does not mean x y or z are not of potential benefit and should therefore be ignored, but that the evidence, to the standard currently required, necessary to make this decision does not exist.

When the cat’s away….

There has been a delicate balancing act while I have been away and with Ella now in Thailand. Rupert was in full control last week but this coming week he is away for work so we have a patchwork of help until I get home.  I have enjoyed the space away from home to absorb some of the very big thoughts that whir around my head, or that I have pushed to one side until I have had the space to give them the time they need. Having my greatest friends, who have known me almost all my life, has helped. I am still getting to grips with the uncertainty of the future, and working around treatments, scans, injections and not knowing quite how far I can plan ahead.

In terms of treatment options, now that I am in Germany I am planning my next move.  I will be returning here at least 4 times but I have to consider what I would do in the event of a relapse. This means being very clear about what my options are so that I can move quickly in the event this happens.

I have a PET scan on 23rd June, as my oncologist needed this to complement the CT scan as a baseline for me. I will see him every 6 weeks I think. I continue to take the hormone pills, and, touch wood, feel generally not  too bad on them. I cannot quite distinguish between what is tiredness from the chemo, the current treatment or the hormones – but with no home responsibilities I am able to take it easy between treatments. I continue to meditate daily and take my many supplements and other pills/medicines. Eating vegan has been easy here, although there seems to be a habit of adding sugar to dishes. I have had lunch at the same vegan café everyday as the food is delicious and organic. For the evenings we either make something simple at the studio apartment (but the kitchen is so tiny this does not involve cooking), or we try and find a local restaurant with vegetarian dishes. Our lack of German is a problem. I am fascinated by the language and am learning bits and pieces from the menus mainly. Spargle – I think is asparagus. Kartoffen – potato. I have also worked out (rather William, my third, who learns German, had told me before I left) that nouns in written German start with capital letters. I realise this is why, when you read German, it always looks as if you are being shouted at. 

Germany! T-cells, hyperthermia and a giant suitcase...

June 9th Tuesday Gottingen, Germany

I am sitting in a tiny apartment in Gottingen with my computer precariously balanced on the sort of table you would take camping. My three best friends are accompanying me (not all at the same time) so that I am not alone. Kate has the first stint with me and this involved flying from Heathrow to Hamburg. The whole experience has exposed my hopeless geography of Germany. Between Kate and I we have possibly 15 German words, and these include the numbers one to ten, giving us about 5 useful words (if you count wasser (water), mit (with), bitte and danke – and auf wiedersehen.  ‘Which is the platform to Gottingen?’ does not feature nor does, ‘Excuse me but according to the timetable the train to Gottingen leaves platform 14 at 18.01 but we are confused as it is 17.57 and there are two trains on this platform, both going in opposite directions, one leaving at 17.58 and the other at 18.06. Where is our train?’  Luckily we are British and therefore used to last minute, unannounced changes to platforms and we worked out, with possibly a minute to spare, that our train was pulling in on the opposite platform.

I travelled with an enormous suitcase, not many clothes but lots of supplements, food, almond milk, juicer, fresh ginger, green tea. Before leaving I had been a bit worried about the state of my wig, which was becoming increasingly dishevelled. When I bought it I was advised that I could spend even more money and buy proper wig hair products, or I could use normal shampoo and finish off with fabric conditioner. As the wig was quite expensive I decided I would go for the latter. I think this may explain the state of the wig. You have to wash it at night and leave it to air dry. Then in the morning it looks scarily like a cat which has electrocuted itself and your heart skips a beat. Will it ever look the same? With some careful attention with a hair brush it would generally begin to look better, but what I could not disguise was the very strong lenor fabric conditioner smell. So, before Germany I decided I had to find a solution as there is one thing wandering around close to home in a wig which does not behave, there is another thing getting on a plane, train and then wandering around a strange city in another country with dodgy wig. I therefore went back to the wig shop and bought myself wig ‘products’. Shampoo, conditioner and a special wig hair spray. The brand (or product?) is aptly named ‘cyber hair’. They work much better. But they also weigh a bit and have all come with me. I am not really sure what else made my bags so heavy but luckily Kate was with me as I would never have navigated the route or managed to heave the cases alone.

The train went from Hamburg (which I now know is in the North of Germany) to Munchen (Munich). Gottingen is about 2 hours by train from Hamburg and passes through Hannover (which I now realise I should have flown to as it is closer to Gottingen than Hamburg). The train itself has a mixture of open carriages and closed ones, like trains a few years ago in the UK – a la Hogwarts Express. We squeezed into one of these and blocked the tiny corridor in it with my massive suitcase. It was a very crowded train but everyone was good humoured despite us blocking much of the compartment.

At Gottingen Station we took a taxi to Residenz Reich, a very compact apartment which I have rented for the time I am here. The city of Gottingen is very beautiful, many half timber houses, well known for its university (which has produced 44 Nobel Prize winners). The apartment block we are in is probably the ugliest building  in the city. The apartment itself is more like the inside of a motor home, possibly smaller, so we have to be very organised. It is perfectly comfortable, the shower works well. The internet is impossibly slow and the kitchen would be a challenge were you to be too ambitious.

We arrived there at about 8.30 pm on Sunday. My first appointment at the clinic was the next morning just before 9am. The practice is owned by a Dr Martin. Praxis Dr Martin. He works in partnership with a Dr Nesselhaut who, from my research, is better known. Dr Nesselhaut’s clinic is about 25 minutes away by car in a smaller town called Duderstadt.  They use the same techniques and the same laboratory and for one part of the process, the extraction of the white cells, I went to Dr Nesselhauts clinic as this is where the special machine for this is.

What is amazing here is that every single building down the street where Dr Martins practice is seems to be full of independent practices of other Doctors, all specialising in different things. I do not understand the German health care system, but it appears to me that with this model they have greater autonomy in how they treat their patients and organise their care – but I do not know enough about it yet. Dr Martin was reassuringly Doctor like – I am not sure what I expected – but I think perhaps I had a deep nervousness that he may be some crackpot. He was professional, credible and clearly knows his stuff. We discussed my treatment and I was given a number of consent forms to complete. These included a list of possible side effects. Which, as with any other such list I have ever come across, includes some very unpleasant, if rare, possibilities. Saying that, the list of possible side effects from my hormone pill (letrozole) is as long as my arm. I had the opportunity to ask him directly about the treatment and also work out my schedule for the week. I will have hyperthermia to the liver every day and my first treatment was that morning.

 I asked him why he was able to administer dendtritic cell therapy and why we could not in the UK. I have still not got to the bottom of what prevents us doing this in the UK, but don’t worry I will. What he did say is that it has clearly taken them many years to be registered to do this and this has, and still does involve, very close scrutiny by the health authorities whose primary concern is safety of the patient.

I also wanted to know why, in his opinion, this was not a therapy being pursued more aggressively elsewhere. I am sure the full response is more complicated, but what he said makes sense and I think helps explain why many promising therapies do not get the investment or attention they deserve where big money is required and returns are unspectacular. This treatment essentially involves the creation of a personal vaccine. Personal to me. Using my white cells. It is time consuming and labour intensive and the vaccine created is only going to be good for me. So there is little/no possibility that this approach will open the way to a vaccine which can be used for the mass market. Clearly when balancing competing demands Pharmaceuticals need to consider the level of investment with potential returns and this approach is simply not commercially viable. I would like to be able to understand if the lack of interest in this approach is in fact based on good evidence that it is not of any benefit, or no more benefit than conventional therapies.  The fact that it does not have the poisonous side effects and that the limited evidence I have seen on results indicates it is at least as effective as the worst performing chemotherapy,  makes me wonder whether our obsession with chemotherapy is related more to the generalizability of this approach (ie it can be delivered to large numbers of people) and the fact that it is based on years of research (making it already old news in the new landscape of cancer therapies). We know that everyone is different and everyone’s cancer has unique characteristics, therefore the future really demands a growth in cancer treatments which are able to take advantage of that personalised information. This is happening, but slowly. So my plan is to stay alive as long as possible while the science progresses and ideally turns into treatments available to people like me. The barriers to this happening at speed are significant so it will take people like me to work out how to break these barriers down and make a bit of noise to encourage this. I just need to understand them better.

More about Hyperthermia Treatment ….

Hyperthermia (also called thermal therapy or thermotherapy) is a type of cancer treatment in which body tissue is exposed to high temperatures (up to 45C/113F). Research has shown that high temperatures can damage and kill cancer cells, usually with minimal injury to normal tissues. By killing cancer cells and damaging proteins and structures within cells, hyperthermia may shrink tumors.

My understanding from talking to Dr Martin, is that the Dendritic Cell Vaccine will train some of my immune system Generals who will then train a large number of T cells – ie their foot soldiers. BUT, there is a limit to how successful even this number of T Cell (foot soldiers) can be against circulating cancer cells, if this load is very high. If there is a solid tumour somewhere also, this makes their job even harder. The plan with hyperthermia treatment is that it constitutes a direct attack on the dispersed tumors within my liver, to weaken them, even destroy them, and so give the Dendritic Cell Therapy a better chance of success/a helping hand, by knocking out the western flank.

The process (as you can see in the photo) involves me lying on a bed which has a globe like ball under my back and a moveable arm which is brought down so that essentially my liver is sandwiched between the two.  So far it has not been uncomfortable at all, in fact I feel little if nothing. The temperature has been going up daily and I have so far had 3 sessions, and had slight pulling/discomfort during today’s session. The main thing that has bothered me is that being sandwiched between these balls makes it more difficult to take a deep breath. They give me oxygen through the nose during the process, but on the first and also second day I had a mini panic attack. Nothing too dramatic but I kept imagining I could not breath, and the more I tried to compensate by trying to take a deep breath only to find I could not, the worse it got. Kate just calmed me down, rubbed my hands and feet and reassured me I could in fact breath. This morning, even before leaving the apartment I started having trouble breathing, simply the thought of going back triggered it. But the session today was better, I listened to a meditation download, Kate distracted me and the time actually raced by. I have 6 more of these to go.

The next major procedure, necessary to make the Dendritic Vaccine, involved extracting my white blood cells. The process is called Leukapheresis. I had spoken to a great woman who contacted me though cancer in pants, who is being treated by Dr Nesseulhaut and we spoke before I left the UK. She was really helpful and talked through what to expect, so I knew what was likely to happen. We took a taxi to Dr Nesselhaut’s clinic. The town Durdestadt is beautiful.  The process involved sitting in a chair with tubes in both arms. One to remove my blood which then went through a centrifugal machine, which separated out the white cells. ‘The individual components of blood are of different size and weight which allows for their almost complete separation’.  The second one was for the blood, minus the white cells to be pumped back into my body. It took 2.5 hours in total. It can make people tired and shivery. I did not feel too bad, tired but not hopelessly. We went straight home and I lay down to rest.

 It is now Wednesday and I had hyperthermia this morning. Kate has taken over Ella’s role and makes me formidable juices and stands over me to make sure I consume them all. She is more lenient on the yucky lumpy bits that sink to the bottom than my daughter is. She leaves tomorrow and passes the baton to Teresa.

We have found a perfect little café which serves vegetarian and vegan organic food, along the road from which there is an organic supermarket. So my juicing regime continues with nice clean vegetables and I can buy most of what I bought with me in my suitcase. Note to self. Germany is quite ahead of the game when it comes to catering for alternative diets and clean living.

Before I end this blog I have to mention my first ever trip to the races (horse racing at Brighton racecourse) and my mini break in Portugal. One of my lovely cousins (I have many), Charlie, took me out for a day at the races. He booked the Silk Restaurant, which technically gives you a great view over the race course and had spoken to the marketing team and arranged for me to choose the best dressed horse before one of the 6 races running that day. I have no experience of horses, except that Ned goes riding sometimes, but I can tell a good plait when I see one (not that I was ever any good at them). So I managed this honour. In terms of making any money – the small bets I made were all hopeless and I made absolutely nothing. Charlie, who’s plan was to donate any profit from the day to cancer is pants, had mixed success and cancer is pants did received a donation of £125 (I suspect this was not all profit having been with him during the races!)

A brilliant, if risky, way to raise money for a worthy cause. The day was perfect as I have not spent time with Charlie for far too long. I was very spoilt. The slight problem with it was the lack of visibility. This was so bad it was literally impossible to see the horses, even on the big screen, unless they were running right past us. The commentator had a particularly hard time ‘As you can see there is nothing much to see. You can hear the horses thundering along the track and at this point, with a bit of imagination, you could all be winners!!'

In terms of Portugal, while Rupert was working during the day and some of the evening, I did nothing and had such a lovely time. The weather was perfect and I just lay and breathed in the sea air, looked at the sky and did not think very much about anything. I managed to swim. There was an indoor pool and a sauna room. As the weather was so lovely no one was inside so for me it was perfect. With skin sensitive to the sun because of chemo, and no hair, I had perfect privacy. I also used the sauna twice and oozed out some of those chemo toxins.  I allowed myself fish and with my appetite returning I actually found my mouth watering before food a couple of times, something I really have not experienced for a very long time.  I managed an Agatha Christie look with my swim hat and big sun glasses, covering my lack of eyebrows, when I was outside by the pool, and for walking along the sea front I tied a ribbon tightly around my wig. A tincey bit sweaty with the sun high in the sky, but perfectly bearable.  We also spent some special time with my brother and sister in law who have just moved to Portugal.

The day before I left for Portugal I had a blood test in preparation for Germany, and my white cell count, which needed to be 4 for the treatment here, was still only at 3.5. It had simply not risen in 3 weeks. I had a test here on Monday, 6 days after that test and after this mini break, and it had risen to 4.6. My haemoglobin had also risen. So – I think I basically need lots more mini breaks!!