Mind Body Spirit Emotion - Penny Brohn Centre April 4th 2015

So I have been a bit quiet since my last post. I was surprised how much of a knock the scan result felt and how quickly I became down and rather frightened. I began to catastrophise about what this could mean. Would it never go from my liver or even get any smaller? My oncologist described it as stable so while no progression, there was no visible reduction. If my liver mets (short for metastases) are only stable by the end of the treatment then if it does subsequently progress it is starting from a base of ‘extensive liver metastases’  rather than no evidence of disease (this is possible and does happen) or even a few spots left over. I paid less attention to the fact that I actually feel incredibly well considering and that my liver function is good and the damage/inflammation markers have halved. He described in a subsequent letter to my GP 3 possible positive takes on the lack of progress on the scan. These were 1) the rapid onset might mean it is slow to respond (my response to this is how do they know it was rapid. I had not tests or scans or anything so frankly no one has any clue how long I have had mets in my liver – symptoms are rare until it is quite progressed. I had a huge cocktail fest in the summer when we visited Rupert’s Aunt on a family holiday and although it was a very fun evening I felt extraordinarily nauseous and ill the next day – which could indeed have been a normal hangover but I remember thinking that first I had not actually drunk that much and that I really did feel strangely bad. Maybe I had the beginnings of it then? Who knows? I digress). The second reason could be that the scan itself does not distinguish between dead and alive cancer – as it is a CT scan it shows mass. It is the PET scan which shows up live cancer (and I have not had one of these yet – and as they involve injecting something horrible I am not sure I want one too often).  Thirdly dying cancer could be creating a ‘pseudo cirrhosis’. Cirrhosis of the liver – despite it being quite a tough organ, never goes away. So this would not be good really.   

Since then I have had one further chemo after my week off and my liver mets are still improving and the pressure under my rib and slight tenderness feels less pronounced so I am feeling more hopeful. I cannot believe that with all the changes I have made to diet and supplements that not only are they helping me with the side effects but in their own right they may be facilitating cancer death or tumor suppression.

The day after the scan Ella and I traveled to the Penny Brohn Centre in Bristol (www.pennybrohncancercare.org). This is an amazing resource for people with cancer. Established by Penny Brohn who was diagnosed with breast cancer and could not believe that the only support and services available to her were through oncology services and the only options radiotherapy, surgery, chemo. Burn. Cut. Poison. There was no attempt to support people to improve side effects, the quality and with that possible length of life. No focus on essentially the terrain within which the cancer was born. Diet. Spirit. Emotions. Mind. All of these things fundamentally affect our cells. Why do people get cancer in the first place? We all have cancer cells and our immune systems can be very effective at identifying them and gobbling them up (or whatever they do). Something happens which makes them less able to do this and cancer takes hold. Genetic disposition can make this easier but not inevitable. So if someone with cancer seriously wants to influence their outcome do they continue the lives they lead before the cancer. A life which clearly lay the foundations for the immune system to crack and the cancer to take hold? Or do you examine your ‘terrain’ and determine what might have contributed to this disease taking hold and consider what you might do to influence its progress. The simple fact that I have managed through diet, supplements, yoga and acupuncture to get my side effects under control and lead a pretty normal life (as much as you can with a compromised immune system) simply makes me more convinced of the power of the body to heal itself given the right conditions. The limitations of current standard therapies are well documented and to simply follow this blindly and pay no attention to any other routes would in my view hasten my demise. This does not mean I do not believe it has a role and some of the newer therapies being developed are a completely different ballgame to the chemotherapies which have dominated oncology for so many years.

If you have time I strongly urge you to watch the following documentary:

www.survivingterminalcancer.com

Penny Brohn set this centre up to offer an alternative and it has since grown into this amazing sanctuary for people living with cancer. They run residential course (among many other things) in a lovely house which has been converted into a sort of specialised hotel, serving vegan and vegetarian food (if needed) so perfect when you are on a diet like mine. They have a library, art therapy, cooking and nutrition classes. We arrived in the evening after a mammoth 4 hour train journey from Brighton on the worlds slowest route which stopped at every possible station – as I had relatively recently had chemo I did find this quite tiring. This was also the furthest I have been away from my bed and support systems since starting treatment. I was very low as I was still absorbing the scan results so was rather tearful the day we arrived.

We had a brief welcome session and mediation on arrival where we met our ‘group’ for the first time. It was as if someone had gone into a shopping centre on a Saturday and literally picked out a random 10 people. We were all so different. Ages. Backgrounds. We ranged from Ella at 18 (who was a supporter) to mid 70s I would guess. With a 31 year old with ovarian, 37 year old with breast cancer, a couple with Hodgkins Lymphoma, a recently retired woman with breast and two with late stage inoperable and untreatable lung cancer, and one other supporter – the husband of one of the women with lung cancer. But the bond between us was immediate. Nothing really mattered in our differences but we were simply bound by what connected us. The freedom to speak with others who were all grappling with many of the same emotions, the insecurity and uncertainty, the grief and also the joy and love that comes with a diagnosis like this. There was lots of crying on and off over the course – but this was good liberating crying. It was a place to be able to talk about some of our deepest fears and our grief. The change in relationship with our friends and family from the strong, dependable sorter to the dependent. I don’t want my children to see their powerful, vibrant mother become a needy shadow. I want to live and to live well. To make cancer something I live with and tolerate but that does not consume me. I want them not to fear it but to understand it. I know I cannot repress my emotions about it. I know it does frighten me and I do grieve but if I can find ways of managing that and living for now and living happily and well in the everyday then this journey will be far more tolerable. And this is what the sessions at Penny Brohn helped me see were possible and began to teach us ways of achieving this. I have always known mindfulness was a useful tool but I am sure I am not alone in not really ever learning much more about it or even if I have practicing it properly. Suddenly it offered such an obvious strategy for me to get through everyday. They reminded us that thoughts are really just imaginations. Things that may or may not happen and when you wake up at night and the demons descend you can either indulge or use approaches like visualisation or breathing to bring your mind back to the now.

Within the group were other people with stage four cancers and it was brilliant to share with them the research we have all done on complementary therapies. The husband of one of the women with lung cancer had spent his first 6 months of retirement researching therapies. She had had a previous unrelated breast cancer many years ago and they had treated this with alternatives and it had never returned so he was already well informed. We now talk on and off as we share knowledge and updates from our various research and have both introduced each other to new therapies and contacts.  

I returned home reinvigorated and am ploughing on as I design a treatment and maintenance plan, including how to detox myself of the chemo and rebuild my immune system when this chemo ends. I will write a blog shortly specifically on some of these therapies and the very strong evidence that exist which support their use as a powerful anti cancer product. It will also touch on the perverse approach to cancer treatments (and I am sure this applies to other diseases) which see the powerful pharmaceutical companies dominating what comes onto the market and is subsequently registered and the finally made available as a ‘standard treatment’ often years after the initial clear evidence of benefit. This delay relates to our systems for registering drugs and then having them incorporated into for eg NICE Guidelines. Then if we are lucky the NHS will cover them. In the meantime the likes of turmeric gets cursory notice within standard treatment and  I am not sure you would hear the average oncologist suggest you explore it. There are products out of patent with strong research underpinning their potential and proven impact on cancer but will they ever attract the millions required for the randomised control trial needed before they can be recognised as a ‘legitimate’ cancer treatment.

The more I read the more I am outraged. In the meantime there remains among so many a blind faith in what oncology has to offer and a nervousness about going beyond this. There is a sense that us poor stage four cancer patients are simply grasping for straw. Hope being our sustenance. All you have to do is take a cursory look on the internet and the voices of cancer patients surviving longer than everyone expected, telling their stories of how they helped heal themselves and the prolific research into other therapies which often show in principle better potential outcomes to standard chemotherapy and I hope this will open your eyes. In the 1980s HIV patients stormed the Capitol. They wanted access to Phase 2 tested drugs. Knowing that by the time the Phase 3 trial was complete they would be dead. Why could they not take the risk that the drug may be too toxic or not quite the right dosage or even that it might counteract each other. And they won. As the documentary Surviving Terminal Cancer suggest also –advanced cancer patients need better access to  both promising treatments sooner as well as a revolution in the way cancer therapies are evaluated and then offered as treatments.

Oooh…I am on a roll. You will hear more about this.

Penny Brohn is a haven. Ella and I still managed to flood our room. We thought we had successfully mopped it all up with our towels only to find out at supper that the Art Room had flooded and they thought it was coming from Room B1. Ooops. They have silly plugs which automatically close. And no overflow on the sinks.

Scan Results B/B

The oncologist looks for 3 things. 1) am a well 2) what does my liver chemistry look like 3) what does the scan look like.  I am well. My liver bloods have improved and are almost normal. My scan has not changed from the baseline.  He would have ‘liked to have seen more of a response’. They are keeping me on the placitaxel as the improvement in liver function would indicate it is working. But I am disappointed and low. I will have another scan in 4 weeks and they will keep monitoring the bloods. The conversation underlined how unpredictable my situation is.

What positives can I squeeze out of this meeting?

That it has not got worse – and cancer multiplies so something has stopped it multiplying.

What is making me sad?

That it is more difficult to stay positive with no visible change in my situation from when I started. That even if the chemo simply keeps it stable (which may be the outcome) – they will still try me on hormones – but I still have a compromised liver and any progression if/when the hormones stop working means I have less to play with.  The worry that it is stubborn cancer which will shorten my treatment options as the ladder of treatments will get eaten into more quickly.

Rupert was with me. He was strong for me. The children were all aware what was going on – and quizzed us when we got back. I had been in London for the day at work and was tired anyway which made it hard to hide my feelings. I felt low and flat. Ella reminded me of what was positive. She found a study that showed that stable disease had similar outcome as those that regressed (but I don’t think that related to the liver).  She also read that CT scans do not show live cancer (like PET scans)  and as mine is salt and peppered it is more difficult to compare the change. Had a number of big tumours you can measure the difference quite easily.

Regardless…I have woken up on Tuesday morning and I am a bit teary. 

The Scan, Dr Who, the Numskulls and Ghostbusters

The Scan

The Scan was at 9am yesterday. It was a CT Scan. This involves lying on a bed which goes through a polo shaped machine. You are hooked up through a cannula in your arm to a massive injection of iodine (to provide a contrast) which they inject into you seconds before the scan happens. The iodine makes you feel warm in your throat and your bladder strangely – for just a few seconds. The scanner person (not sure what his actual professional title is) was Polish. The same person who did my pre- chemo scan. After that scan I was convinced I could read his face and his face told me that not only was my liver riddled with cancer but that it was all over, bones, lungs, everywhere.

There is something about being near a person who has information about your condition before you do. You can’t help yourself, but you hang on to and try and interpret every twitch, every smile, frown, poker face. In this case my assessment was that he was being more friendly than last time. I put this down to my bandana - I was clearly a youngish women with cancer. Reason to be nice and kind. He chatted more than last time. I asked him if he could please take some really good pictures and he said he would do his best.

We had a funny moment. Prior to the scan I had to get dressed into a cotton hospital gown that ties loosely at the front. He had told me, in his relatively thick accent to ‘take off your clothes except your underwears’. I did so.  Not long after, as I lay still for the initial mapping scan  - the preparatory scan they take before the iodine goes in, he came out of the little command centre room next to the actual scanner which he retreats to when the scanner goes on and said ‘we have a little problem. I said to undress to your underwears’.  Now I took underwears to include my bra. Rather stupid given the area I know they need to scan. So there I was with an big iodine injection attached to my right arm and my bra still on. I managed one handedly to undo it, thread it through the arm holes and hang it down the side of the machine (I keep my arms above my head). Very deft expert bra removal process. Note to self. Take bra off before next scan. 

Once the scan was over my assessment was that he was not going to catch my eye. He put on his poker face. Not sure what to read from that given that last time I decided the cancer must be everywhere. Hoping that he has been expertly trained to give nothing away because if he were to smile and wink this time there may be a time in the future when he does not smile and wink so best to make no face at all, ever.

I will find out on Monday afternoon and will spend the weekend working out what questions I need 

to ask the oncologist.

Visualisation – Dr Who meets Ghostbusters and the Numskulls….

In all of the books and testimonials of recoveries, visualisation plays a major role. People have a way of visualising their bodies overcoming the cancer. Now I have always been rather irreverent about such approaches. The last (and only time) I have really attempted visualisation was during my pregnancy with Tom. After Ella’s rather car crash birth I was determined to give birth to Tom normally and did every possible birth class I could to help me prepare physically and mentally. One of these involved yoga, breathing exercises and usually ended with a visualisation. As I had a small baby at home I would sneak off once we got to the visualisation session. But one day I decided I really needed to engage. I sat,  willingly, open to the possible benefits it may accrue to my future birthing experience. I would not let my mind wander. I would  take this seriously. It clearly works for many people, I just needed to  open my mind to it. So the visualisation began. We had to close our eyes. Breath.  We had to think of place, special to us. I thought of the hills of Mid Wales where my Dad used to take us on long hikes and climbs as children.  After a while we had to sit down and look around us. We needed to find a flower nearby and focus on this. Then we needed to focus on the petals of the flower which would start closed and would then turn to the sun and begin gently opening.  Hmmm. We needed to imagine our cervix, a bit like the flower, opening up. Well –what flowers do you think you would find on a hill side in Mid Wales? When I looked round I was surrounded by bracken and thistles. So my flower was a thistle. At which point I nearly wet myself laughing and had to leave the room. Visualisation was simply not for me.

But…I am in a different place now. Open to any strategy that my help my path to life. So I have been considering for a while what my visualisation should be. There are times (like when you are lying on a scan machine or you wake in the middle of the night) when you need something to help you focus your mind. I read about one person who imagined their blood was powerful and strong and would splat the cancer and dissolve it like an acid. I thought that would be a bit monotonous. There are only so many versions of a splatting motion. I thought about ants. Millions of worker ants trekking through my body, seeking cancer cells and collecting them all up. Then I considered miniature white morph like characters. But that didn’t last long. I had thought of a more military approach. Basically an army swot team planning strategically to take out those cells. This would involve lots of blasting and tactical plans. The dietary privations I would inflict upon the cancer would be akin to starving the enemy. I still think it works well but it was a bit anonymous. Faceless soldiers, blasting around my body. These cells are in fact my cells. Part of my body. Rogue, badly behaved cells, but mine all the same. I needed a different approach. So here it is. It came to me during my last pre chemo acupuncture session.

It has some of the essence of seek out and neutralise. It involves a team, rather than an army but it allows for the same strategizing and tactics. It is Dr Whoesque with a bit of the Numskulls – those people in the Beano Comic who control the person from the brain. They have numskulls to open the eyelids, roll out the tongue etc. In this case my visualisation involves a huge team ‘Team Lou’, yes, there is some funny Team Lou t-shirt or uniform (think paintball kit). Team Lou is made up the huge network of people who have simply overwhelmed us with their love and support. From our closest family to parents of the kids friends who just drop by out of the blue with a meal. The team has some distinct chapters. There is the prayer and spiritual chapter – those friends all over the world praying and doing medicine pujas etc. There is the food chapter. Diane and Jeff who come every Wednesday and cook all afternoon, producing at least 3 or 4 meals for me and the family. Christine who seeks out organic vegan recipes and creates meals she drops by with. And Rory who cooked a massive shepherds pie for the kids and dropped it off. My mother cooked a lasagne, Colleen a squash soup and homemade sourdough bread. Teams are not exclusive and people belong to a number of chapters. There are the regular text messagers, love and uplifting thoughts and sayings (Tim and Paula). The flower and present chapter – includes everyone – I have never been so spolit. Grizzle (Clare) sends weekly packages with presents – organic creams, notebooks, music, supplements. I have had books, CDs. The love and friendship chapter – is every kind action and thought that keeps me and my family, lifts for kids to places we can’t get them to or from, kindnesses and hugs. Then there is the medical and broader health and well being support team - the oncologist, acupuncturist, yoga teacher and lovely Ann Rose who smells of lavender and volunteers at the chemo unit, and has done for over 25 years, and massages my feet while I am waiting for chemo.  So – this team (I still want to call them an army) – have been shrunk and transferred to my body, I have a particular Dr Who episode in mind, and they exist in miniature, dressed in their Team Lou kit with a Ghostbuster type machine on their backs, a cancer buster. This is a bit like a hoover which is used to vacuum up the bad cells which are then neutralised in the machine and spat out the other end as healthy new cells.

Currently most people are concentrated on the liver area of my body, as that is where the rogue cells are running amok. But I see my brother leading a team, which includes Ned and William, into the further reaches of my body, in search of any cancer stem cell five star generals daring to set up camp somewhere else in my body. Much of this affair is controlled by Marshalls (the Numskulls) from a control centre. Ella is there most of the time but Rupert is there, Tom and others at various times and my sisters. As I down one of my fiercely green juices or a green tea I imagine Ella speaking through the intercom system to warn people that the cancer cells will be particularly vulnerable as these pass through my body so to keep their eyes open for cells lurking in dark corners trying to avoid detection.

A rather bizarre and mad visualisation – but consider how many scenarios to I have to play with! The only problem with it is that if I wake up at night it is not a particularly calming visualisation and it is a bit like switching the telly on. So last night when I found myself awake at 3am I switched that visualisation off, Team Lou was fast asleep and I put my Reiki infused rose crystal a lovely old school friend sent me, around my neck. I splashed some Lourdes holy water that another friend from Team Prayer sent me and then crossed my liver with some powerful holy oil from Colombia, a friend from work gave me. Then I tried my yoga breathing as my heart was beating too fast and repeated the word ‘heal’. That was a bit more appropriate for a night time.

But the above mad and busy Team Lou scene is what distracts me at all other opportunities. It amuses the kids. 

Louise’s first major foray into visualisation goes overboard. 

Scanxiety, treatments and a club I am not sure I want to belong to….

Treatments

I realise that in my blog last time I spent a good deal of time talking about all the ins and outs of chemotherapy, surgery, radiation and hair loss. I don’t really want to do that this time. I feel somehow above all that – been there. I may share a few details – but I will be sharing only happy and vibrant photographs. I want to focus more on my other journey – healing. Taking control and learning about survivorship. The chemotherapy will only manage the symptoms of the cancer but it won’t cure it. In fact chemotherapy can make the cancer stem cells more aggressive. They are clever cells. Five star generals, cleverly hidden from your own immune system so they can stealthily race around your blood and avoid detection. Outside of the more conventional approaches to managing cancer there are so many inspirational stories of survivorship. People taking their healing into their own hands and using a whole array of approaches which help the body manage the cancer itself. Not necessarily rid themselves of it but live with it, keep it under control. The benefits of turmeric, green tea – just to start are, and have been well known (and written about extensively) – but there are more. At some point I will share some of what we (myself and Ella) are doing to take control of my life and to do our damndest to make my body a place which is very inhospitable for cancer, and to make my immune system more able to manage it.

I will not reject more conventional medicine (at least not yet) but will use it to support the process. The regime of diet and supplements, yoga and acupuncture I am already on has had an amazing impact on my side effects. These last two week I have had way more energy than after the first 3 rounds of chemotherapy and my blood count before my 5th session went right up. My daily routine goes a bit like this:

Lemon water, sauerkraut (for enzymes), a fresh juice (all prepared by Ella) and then the following supplements – fish oil; turmeric; milk thistle; chlorella; aloe vera; spirulina and matcha green tea. We have found a supplement called Avemar which I take twice a day (8 tablets a day) – this has been amazing for side effects. Then in the evening I the same supplements plus co enymze Q10 and l-glutamine to help prevent neuropathy. I drink green tea through the day, 3 juices and my diet remains vegan and mainly organic. I do yoga at least twice a week (sometimes before the sun comes up when the night meets the day. This is when the birds start chirping). I also have acupuncture before the chemo.

My dry skin which had been itchy and inflamed for the first 3 weeks of treatment has settled and is clear and soft. I went on a walk on the Downs with Ella about 3 weeks ago and could barely walk up the hill again. I nearly fainted and had to lie down on the ground more than once on my way up – Ella stood over me like a running coach reminding me that getting better was never going to be easy and I had to put so muscle into it. Last week we did the same walk and I stopped only once on the way up. My brain feels alert. I am not without side effects but they are extremely manageable and I feel pretty good – and with my new hair definitely don’t look like I have some life threatening condition. Together this simply confirms that I have the power to influence my health.

New Treatments

I am also trying to get to grips with scientific developments. Trials, immunotherapy, gene mapping, personalised medicine. We are on the cusp of such major breakthroughs in treatment – I simply have to stay alive long enough to benefit from some of these. The United States seems streets ahead. It seems quite normal there (according to my ‘friends’ on the Inspire site – a site for women with advanced breast cancer) for women to have their tumor mapped for genetic mutations for example. There has been no question about testing my biopsy for mutations. I am not even sure you can do it within the UK unless as part of a research trial. In the US you can send your sample to Foundation One and they will examine it. They may identify a number of mutations. That information may simply be inactionable. ie that there is no treatment option indicated as a result of this knowledge. But it may be that that the mutations identify indicate eg DNA repair is the ….

Here are two responses to a question I posted asking about genetic mapping. The first response tests my intellect a bit – but I am working on it. Second one more straight forward.

‘

It might be helpful to stop thinking of cancer in terms of the genetic mutations that drive the cancer. It's nice to know whether the gene is present or absent, but it would be even nicer to know whether the gene is "actually" driving the tumor in your individual cancer cells. While some laboratories use genomic or proteomic testing to detect mutations in certain pathways, some other laboratories use functional testing to measure the end result of pathway activation or deactivation in the individual (not average populations). It can then predict whether the "individual" cancer patient will "actually" respond to a targeted agent, or not. When it comes to drug selection, the molecular investigator can only measure those analytes in paraffin wax that they know to measure. If they are not aware of and capable of measuring a biologically relevant event, they cannot seek to detect it. The premise of functional analytical platforms is that the observation of a biological signal identifies a candidate for therapy whether they understand or recognize the target.'

‘Basically, the way this testing works is that they look for common cancer mutations. The mutations in the Foundation test are not limited to those commonly found in breast cancer. The idea is that you could have a mutation that is common in another type of cancer, and there may be a drug available that is directed at that particular mutation (for example if you had an EGFR mutation, it might suggest that an EGFR inhibitor may be effective for you, even though the drug was developed with lung cancer in mind).’

There are other treatment routes - again including drugs licensed in the US but not here yet and an approach I am exploring – dendritic cell therapy (immunotherapy)which is only possible in Germany and Mexico but for which I have read some very powerful evidence and testimonials. I will talk more about these – but as you can see – staying alive is going to require military planning, research, tenacity, determination and probably a good bit of fund raising at some point – as the treatments of the future can only be had now if you are willing and able to pay.

Scanxiety

In two days I will have my 6th chemotherapy. Six out of 12, assuming that it is doing what it is supposed to do. I will know that about a week or so after this session as I will have a CT scan. I have had only a couple of meetings with my oncologist so far, and these have been a bit of a blur. It was all so new I more or less just listened, asked some very basic questions and followed instructions (doesn’t sound like me!). I was scared too, scared to ask questions for which I did not really want to know the answer. I have avoided too many probing questions. There are questions I have not asked but for which an answer exits (as opposed to crystal ball type questions for which the answer is almost certainly ‘… well it depends, everyone is different’, for example about the extent of the cancer on the liver. It was described by the cancer radiologist at my first scan as ‘salt and peppered’ through my liver and in my written first CT scan report as ‘extensive metastasis’ . I gleaned there must be tumours of sufficient size to take a biopsy (so a bit larger than salt and pepper) or I would not have had one. Other than that I have not asked directly anymore detail about the state of my liver. I know my liver bloods are OK – so it is not actually affecting the functioning of the liver at this point. It does feel swollen and hard which does not feel right. But with my scan coming up I am thinking that these questions will soon inevitably be answered as the meeting to discuss the scan results will specifically look at how responsive the cancer is to the current chemo. To determine that there will need to be a comparison between the first scan and the one I am soon to have. So one way or another I will soon have a better idea of the state of my liver, before treatment and around now.

There are a couple of websites I spend time on (mainly Inspire – which I mentioned above) and I search these for insights into the stories of other women and I join in saddo conversations about all things advanced breast cancer. There are often stories of great responses, and then set backs, but there are examples of women with liver mets who do have good responses to treatments and tumours can be pushed right back and there are even people who have periods of NED.

Oh the acronyms I am becoming au fait with! NED = No Evidence of Disease – and this is really the outcome you want after your scan. This is the A* of scan results. Other outcomes can be ‘reduction’ (A-/B+)….not sure that is the proper term but the tumours are getting smaller, ‘progression’….ie the tumours are still growing (C/D), ‘significant progression’….growing lots, (E/U) ‘ no progression’ (…no change) and ‘stable’ ie no or little change after a period of no progression or reduction (B-/C). I am trying to work out what would be top marks at this stage in the game given I like to be an A type student – but don’t want to get myself too hopeful as I am not even sure really what my baseline was – so could I even hope for NED by the end of my 12 weeks? For the moment I will be very disappointed with progression and reckon this would result in me stopping this treatment and starting something else. No progression would be a bit of a nothing result. Reduction is the one I am going for (not sure if ‘significant reduction’ possible after 6 sessions). I realise that I have a future of what a new facebook group of friends (very exclusive, private invitation only – you just need to have advanced breast cancer to join) call ‘Scanxiety’. And I am experiencing it for the first time. First but definitely not the last time.

Who are my New Friends?

Through the Inspire website, I posted a question and someone from the UK messaged me and asked if I would like to join a chat group of women in the south of the UK. A support group of women in the same position. I joined and within a day I had 76 messages of hello and support from this group of strangers. I felt rather overwhelmed. Lots of ‘Hello Louise!’ ‘Sorry you had to join us but we are here for you!’ type messages. I have since received a constant stream of posts from members of the group chatting to each other. I don’t really understand facebook at the best of time, but it has been non stop and all posts seem to land in my email inbox. I worked out today how to stop this happening. I am not sure I want to be part of that group anymore. The last post I read before going to bed last night was ‘Help. It’s in my brain! What am I going to do? Scared’. This morning it was a depressing one from a women saying what a terrible mother she was and how could she have done this to her children. I couldn’t help myself and spent some good time scanning the posts – all quite depressing stuff ‘Buying a wheelchair – any ideas?’; ‘liver resection – worse than childbirth’ ‘Running out of options’. Not surprisingly I felt low yesterday – it’s like being invited to an exclusive group you really don’t want to be part of, yet these women are all managing a whole range of physical and emotional and social issues just like you – but somehow I need to feel apart from this. Slightly exclusive. I am going to be different. I am sure they all think the same.

Scan tomorrow. Will I be an A*student or will it be more of a B-/C….?

Writing two days later....Had my sixth chemo today (19th March). Imagined my scan would be about a week afterwards but no – it is tomorrow morning at 9am. Gulp. My white cell count and neutrophils were good today – better than last week and best so far on chemo – which is testament to my diet, supplement and moxa regime. This means I will avoid white cell boosting injections if we can keep it up. We have the power…

Telling the Children – again…

I have been trying to work backwards to get the sequencing right. I had the endoscopy on January 22nd, a Thursday. It was Tuesday 27th January that I had the ultrasound and found out what had been going on in my body. That week I had a parents evening for William and his birthday on the Saturday. Rupert and I needed to try and absorb the news before we would know what on earth to say to the children when we didn’t really know what it all meant for us. We knew we didn’t want to ruin the joy of Williams’s birthday and so agreed we would tell them on Sunday 1st February after a family walk on the Downs. Ella was on her carefully planned year off, volunteering and learning Spanish in Cusco, Peru and was due home in a few weeks before the second part of her travels – to Asia.

How do you tell children news like this? I went to talk to Lynette who helped us. Always tell the truth. But the reality is the truth is full of unknowns. The truth is that the cancer has come back, that the doctors are going treat it like they did last time and they will be working very hard to keep treating it. It would not go away but there were lots of things they could do. In a later blog you will hear more about what I believe doctors can in fact do (possibly help treat the symptoms –but not the cause and that is something that I must do).

We were not sure if we should tell the boys first or Ella and agreed that we should call Ella as we did not want her to hear anything via her brothers without talking to us. On William’s birthday we had been to the cinema and then to have a pizza (I was already, at this point, avoiding all dairy and meat – which limits your options in Pizza Express – so I had a not very delicious plate of broccoli). We called Ella on the Saturday morning (Peruvian time). She was far from home and was very tearful. She said she was coming home that evening, and tried her very best to do so but it was too late in the day in Cusco and with travel agents. We tried to encourage her to stay a little longer and say goodbye to people. I can’t believe I actually thought she might stay there. In all of this guilt has been an overriding feeling for me. Guilt that this news has / will profoundly impact the lives of my children, my parents, my siblings, my best friends and of course, Rupert. So Ella’s immediate response to come home was the first very tangible example of this. Already the course of her life, as I (and I am sure she) had imagined it, was changing. She had worked for months at Subway, making sandwiches and babysitting when she could to earn money for her travels and she had planned so carefully and with such excitement. She booked her return ticket and we had her home by Monday. She is now my constant companion and we are exploring the world of cancer and strategies to live together. Her presence has grounded the boys, she replaces my spirit in the home when I am not feeling 100% with the chemo and she is a second mother figure for Ned.

We told the boys later that day over lunch. As with the last time I had wanted them to see Rupert and I interacting in a normal way, I wanted them to see that we were coping, as how we were, as I knew from last time, was so important in setting the tone for their reactions. There were tears and hugs and more tears and questions. But no tears from Rupert or I, we were positive (as I am) and just repeated that while this time they could not get rid of it completely we would be fighting it and I would have treatment, but that things would change. They asked if I was going to die, Ned did, and I asked him to ask me if I would be run over anytime soon. To which of course the answer was, I hope not and I don’t know. They clearly needed reassurance that I wasn’t going anywhere anytime soon and we told them that if we ever thought that was the case we would tell them. The tears subsided and for the following couple of weeks there were a stream of questions, not from all of them as a group but one on one. Having Ella has helped as Tom can ask her whatever he wants and I think trusts that she will tell him how it is and I think this gives him some reassurance. In my heart I know that I have opened up a new possible future in their brains, one without me, but I know they will have time to come to terms in some way with that possibility with the security of my love and Rupert’s love around them to consider this future.

I had called William and Ned’s school to let them know the situation so that they would be ready to put in place the necessary support systems there. William is quite self-contained, he has been more demonstrative with me, kisses and hugs, which he was never so free with and he has asked me more probing questions about the cancer and the treatment, but he has not discussed it with anyone at school (at least no adults and I doubt even any of his friends). Ned however had 2 or 3 wobbly weeks, needing to leave class a few times to go and sit with matron. He has a lovely friend from his old school who has been keeping an eye on him and she would accompany him to matron and sit with him in class. One time he said he was looking out of the window, and he thought about me as a young girl and that made him cry. He is in Year 7 and instagram seems to be how they all communicate. As he constantly loses his phone he has installed it on mine – so I get to see what is going on (!). There followed a whole range of ‘Kill Cancer’ type posts from Ned and responses from his friends. One read something like ‘ I wish cancer would get ebola and die’ which attracted lots of ‘yeah die cancer die’ from his instagram ‘friends’. He did a fundraising for me. Actually it was all very secretive and I am not sure he told those donating that the money was for me, it was for cancer– but I benefited very directly. He collected a tin of coins and took Ella into town with nearly £100 worth which he spent on new pyjamas, lush soaps, candles and more for me. The boys are all very gentle with me and it is certainly much easier getting them to pick up the clothes off their bedroom floor or go and walk the dog. They have also had me around more than they have had for a while as I work from home during the chemo weeks to avoid getting trains. My neutrophils and white blood cell counts are very low. As I have had chemo before my bone marrow is struggling – so I am avoiding unnecessary germs.

We are planning a few trips. I am not quite ready to detail a bucket list, but I am quietly noting things I have always wanted to do. One of them was to go to the theatre more and since diagnosis I have seen Swan Lake, the mouse trap and Saturday Night Fever. We are also getting more organised to try and find dedicated time for Rupert and I to have some time together – booking that weekend away etc that never seems to happen when life is so busy. We are looking at organising a trip to Thailand or somewhere with good vegetarian/asian food, yoga and massage, over the Xmas holidays. This is likely to break the bank (another of the bigger questions we have to face as a family) but I will I hope be fit enough to go and I do not know how many of these opportunities we will get. Many, is the plan, but we need to plan for all scenarios. Also on my list of things to do includes to knit something, something that could actually be worn. I am very good at half-finished scarves. I cannot actually name anything, other than a scarf I made for a teddy bear, that I have ever completed since knitting classes at school, but I enjoy knitting. I have also begun to investigate the world of oncology, drug regulation and how the current system of approving new drugs is simply not fit for purpose and is far too slow to keep pace with the science. More on this later...

Goodbye Hair

So I went into London to work on Monday. Having lost more hair over night my only option was a white beanie hat to cover the growing bald patches. With some earphones I could have passed as a rapper - I wore this all day. I traveled up to work with a friend who offered her husbands services - as he had short/bald hair and had the right equipment. I am not sure she could believe how quickly I snapped up the offer and that evening after work they both arrived at my house ready for action. We set a chair up in the middle of the kitchen floor and the hair removal was a great family affair with Rupert and the kids (and dogs) all actively part of the process. I am going to try and post some photos - before (with the white beanie hat), during and after. I will also add one with my new look.

I went with Ella and another good friend to Trendco, the wig go to place in Hove, yesterday and we tried out loads of different wigs. I really thought I would come away with two wigs, a blond and a dark one. I know when the hair comes back it will be dark so I reckoned why not go dark now rather than wait for the end of treatment - to make the transition less obvious. But in the end we all agreed on a wig which is totally not what I expected to choose - a reddish colour. We took some photos so I could send them to my sisters, brother and parents - just to test it out on them. I am not sure what they really think, except for my mother (a red head herself) who is totally keen on having a red headed daughter at last, but they were polite enough.

The only person who still does not know is my poor husband Rupert - he is on a work trip in Norway, and possibly stuck there as Norway Air is on strike, and despite having sent him the photo he has not responded. Too late now as I have just bought it and it is sitting on the polystyrene model head by my bed ready for a day out. Imagine that, you leave and your wife is blond - come back and you are married to a red head (actually that scenario misses the bald stage in the middle). My best friend Sophie thinks I look a bit too grown up in it. The problem is wig shops do not have a 'frizzy scarecrow' line in wigs so it was impossible to find one that looked remotely like my old hair. This is the new me.

Free flowing tears March 2nd 2015

The first two days were the worst. I took a valium to help me sleep on the second night – the demons come out at night. We had William’s 14th birthday on the Saturday and had a full day planned. The thought of telling them anything before then was too awful so Rupert and I kept it to ourselves and a few close family and friends. I didn’t cry at first, Rupert did. In the meantime I had been searching the internet, buying books, reading cancer survival stories and began putting together what has become my action plan for living. On the third day since finding out I sat in bath and bawled. But it was not miserable, woe is me, cry it was just free flowing tears which I had clearly been holding back and they simply needed to burst out. It was a gulpy, snotty, tears rolling down the cheeks cry. I felt invigorated after, and cried on and off much of that day. I felt liberated and free somehow.

Of course my first internet searches were in the pursuit of determining how long might I have? It felt as if this would then answer a range of other questions about what I do next. Do I stop working? Do I start writing notes to my kids? Do I finally organise the family photos which are in state of chaos – some print, some videos on out dated tapes or disks and others on computers and clouds. Do I wear pink and run marathons? I think the crying on the third day, was triggered by the daily reality of life. I woke up just like every other day. And I was still here. What to do? I felt the same. I looked the same. Hmmm. I might die. I will die. What in fact was different to a week ago, except that it was more abstract then.
I have since been reading inspirational stories of survivorship and approaches to take some control of supporting your body to become a place that cancer cannot thrive in. Which in practical terms means I am now a vegan, organic where possible, non alcohol or caffeine drinking person, doing yoga – at times at 5 in the morning (apparently the most powerful time of the day) and taking a number of supplements which we have researched. There will be more on this later as it rather dominates my everyday life at the moment in an attempt to find food that inspires and keeps me well nourished during the weekly chemo.

In the meantime I have been overwhelmed with love and gifts from across every branch of my life, family, friends, neighbours, work. I went to a boarding school and spent the ages of 9-17 with the same group of girls, almost all of whom have remain connected and form a powerful support group. I have had a steady stream of presents from them (ugg boots to help with neuropathy from chemo, make up, books, supplements), letters, recipes, distractions (breaking bad, music cds). I have also been sent spiritual support from all over the world, I have a reiki crystal I wear round my neck, a rosary, holy water from Lourdes, a Japanese prayer, holy oil I have to administer to the liver area before going to sleep. I am being prayed for in Nepal (with medicine pujas), Colombia (a prayer network), Nigeria, Tanzania, Sierra Leone, America, New Zealand, Spain. Pretty scary stuff for those cancer cells. They should be very afraid. I have local friends going to great lengths to seek out organic ingredients which they cook (either with me – rather with me as the student, being not the world’s most natural or able cook) or that they drop off. I am incredibly lucky.

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Treatment
In the first week, days after being told and as I was embarking on my new diet (which at the best of times would have been hard on my body – as it was akin to a major detox) my oncologist organised a liver biopsy so they could confirm the characteristics of the cancer. This was booked on the Tuesday, two days before my first chemo. It involved having a local anaesthetic and a probe (forgive my non medical terms) being inserted through my back, just under my ribs (I lay on my side) with the aid of ultra sound so the radiologist (actually not sure what he was) – could see and aim for a tumor (I was not liking the idea that there was one big enough for him to actually aim for and extract – I thought salt and pepper sounded better, a bit smaller). But clearly there were at least 2 places where the tumors were big enough to extract a sample from. He went for the one near my back. After a few tests, with me having to breath in synch with him, he took a biopsy – and then a second. I felt I had been pretty calm throughout (I had the support of Lynette who used to be my Macmillan nurse but who is working as matron at the hospital I am being treated at – by coincidence and who has stepped in as one of a number of angels who surround me). The pain after the procedure I found unbearable. The liver does not hurt but the capsule around it can swell which puts pressure on nerves – which can result in deferred pain in the shoulder – which is quite weird – but I experienced it so it must be true. After an uncomfortable roll back to a recovery room and a delay while a morphine prescription was being organised, the pain was brought under control and I spent the day lying on my side, partially snoozing.

My chemo day is Thursday. Last time I had chemo one of my main chemo nurses was called Lou. She was loud and fun but my last words to her were that I hoped I would never see her again in this context. Lou is the main chemo nurse at the chemo unit I now go to. So I weirdly have the almost exact team I had before around me – chemo nurse, breast care nurse, oncologist. Lou is efficient, practical and makes the process as painless as possible. Last time I had a port in my chest. This time I have not had time to have one put in so they have been finding a vein in my right forearm or hand each time. I think they do not think this is sustainable as the veins can collapse and it is more tricky having to set it up each time but I like not having a port. This chemo takes only one hour to administer, plus half an hour before hand for the pre-meds (a steroid, piriton, an anti sickness and something else I can’t remember what). On top of that I have been enduring the cold cap. Which for those of you who read my blog last time, is a surprise – as last time the cold cap was utterly unbearable. This time I am fortunate for a new cold cap technology called something like Dignity – I can tell you it is absolutely not dignified in any shape or form. I will post a photo as evidence. It is more comfortable than the earlier version. Together with a shorter chemo session, meaning I only need to wear it for a total of 2.5 hours, has meant I have successfully completed 3 chemos with the cold cap.

I have to say I have felt pretty proud of myself. An extra incentive has been my excruciating experience of actually having to endure having not only dark brown hair (that no hairdresser will touch with dye for ages after the chemo), but curly brown short hair – my social worker look (sorry social workers). Really – do I really, really have to do that again. That makes me cry. I thought I perhaps had avoided this. But not so. Over the last 3 days our house resembles a hairdressers at the end of the day. Hair in my mouth, on my shoulders, in the food, in everyone’s food, over the floor, on my pillow, in my hat. I hoped perhaps it was just the ‘thinning’ that can ‘sometimes occur with the cold cap’. But the hair just keeps coming out.

I booked an emergency appointment with the hairdresser to salvage what we could. I had not washed my hair for 10 days to avoid losing pieces unnecessarily. During the salon hair wash (in a private space in the hairdresser – both for my own privacy but also I realise I would not have been a good advert for the place) the hair continued to come out. I had two people trying to then brush the remainder, minimising the pulling. But on and on. I left with a bald patch at the top of my head, a parting that looks more like a river than a little stream, the top half dark new growth – roots which would normally be coloured – and the bottom half dry, dead, scraggly, thin hair. The hairdresser was clearly skilled at working to make thin hair look as big as possible –and a lot of diffusing and puffing went on at the end. With a hat, I have enough hair that it is passable as hair. But it continues to come out and going out with no hat or bandana is absolutely not an option. So I have an appointment at Trendco – the wig and bandana specialists. And I think my fight for my hair may soon be over. The question now – is wig or bandana? Which wig? How about having multiple personalities, bald one day, ‘clarissa – the brunette’ (the wigs all have a name) another, ‘kimberly – long and blond’, the next and a few bandanas in between….

Rudely Interrupted

Where to start? I am not really sure. Probably the best place to start is how I came to know what I now know. That my breast cancer has returned. The last time I wrote this blog I described how I explained my diagnosis to my children. I drew a line – which represented not so bad at one end and very bad at the other end and explained how lucky I was because while getting a breast cancer diagnosis was not good, I was lucky because I was pretty much close to the very end of the not so bad end of the line. The tumour was 1.9mm, grade 2, no lymph node involvement and no vascular invasion (sign of the tumour making its own blood source). My oncologist indicated that not having chemo was certainly an option. But at the time, with the children between 7 and 13, I chose chemo. I did not want to find myself, where I am today, imagining I could have avoided it, if only I had had the chemo. But it came back anyway. I was in my 5th year post diagnosis.



I am now at the other end of that line. But what I am learning is that the end of the line is unknown. That advanced breast cancer is a game of cat and mouse. That it is described as advanced, not terminal, because at this point in the game who knows where the end is. And this is where my journey is taking me. Who really knows when the end is? What was my future? I simply don’t know and I never did. It was a series of aspirations. Imagined scenarios. Certainly how you imagine your future influences how you live your life today, in an attempt to move you closer in that direction. But the unpredictable has a way of interrupting the very best of plans. And so my blog is changing its name. For this round two it will be called - Rudely Interrupted. There is no other way to describe it.



Since September last year work has been absolutely full on exhausting. In October alone I visited Mwanza in Tanzania, Kano, Nigeria and Seattle. I was drawn into the Ebola crisis in Sierra Leone on the back of our work to reduce maternal and newborn mortality there. This involved inhumane deadlines for proposals to support the laboratory system in Sierra Leone and start implementation almost over night (as well as over Christmas), followed by another rapid turn around proposal to establish community care centres as part of the UKAID response. The proposal went ahead and the time and energy that required, but in the end the tender was dropped despite the level of effort to design an emergency response in a very short timeframe. I love my work and the period from September to January is always super busy but this stretch hit me hard. I never really recovered from the travel in October and took this as the impact of the travel, time zones, impact on family and simply load of work. But perhaps I was already fighting a battle inside that I did not know about. The first outward symptom was sore, sensitive and incredibly dry skin – all over my body, not just on my face or arms. In November Rupert and I went out for dinner with neighbours and that evening it seemed to move up my body to my face. I knew this was not just dry skin, it felt something systemic – I can’t say I imagined it was what it has turned out to be, but I certainly felt something wasn’t right. I went to the GP once before Christmas but with nothing much more than a non specific skin issue. It continued, getting better at times, over Xmas but it did not resolve itself. I went back to the GP and asked for blood tests. These came back ‘satisfactory’ and for a while I felt slightly relieved. But the skin issue did not resolve and I had lost my appetite for alcohol. I also had occasional heart burn. I was due to fly to Malawi and Zimbabwe, but the day before leaving my skin was particularly bad and I wondered if I even had a temperature. The last thing I could do was travel across Africa with a temperature. There are ebola checks at every boarder (these basically involve filling out a form and having your temperature taken). I did not want to get stuck on one of the many change overs with a temperature. So I cancelled the trip last minute. I went back to the GP for a letter for insurance but also asked if he could refer me somewhere else as I was not happy – something was going on. So he sent me to a gastroenterologist who booked me an endoscopy and then an ultra sound.

The endoscopy, which I had with no drugs (yuch), showed slight inflammation of my duodenum. Again, for a short while, I felt relieved, I had a possible explanation for what was going on. I wanted to fit the puzzle together and this sounded a good way to go. Until I looked more into duodenum ulcers and realised that I had none of the underlying reasons (the HP bacterium which I was told I was negative for, and long term use of eg painkillers). I had some nagging doubt, but imagined that the gastroenterologist might have a reasonable explanation – you can’t find everything on the internet surely? So by the time I went for the ultrasound I was not really expecting anything in particular and imagined that he would already know what was going on , this was just to confirm it. So that evening (my appointment was at 5.30), Rupert was at work, coming back from London later as usual and the kids were at home, I was due to go back to give them supper. I went on my own.


I lay down, and after not very long time noticed the radiologist was not looking happy. I asked immediately what he could see, and in the same breath told him I had previously had breast cancer – a fact the gastroenterologist had failed to note on the referral. The radiologist, who subsequently did my liver biopsy, just came out with it. He was not happy with what he could see. He was a cancer radiologist and what he could see was what looked to him like breast metastases, salt and peppered through my liver.


I have always had a fear of the breast cancer coming back in my liver. And it had! It was so unreal. I almost started hyper ventilating, it was speed within which my reality had suddenly changed so dramatically. They located the hospital based breast care nurse (who I had known from previously) quite quickly and she came in to be with me. They kept asking if there was anyone I could call – but I simply couldn’t think who on earth I would call with that news, right then. Rupert would be on a train and telling him something like that as he sat far away from me on a crowded commuter train would have been cruel. I think I did in the end call him. The news was cruel. My oncologist happened to have a clinic that afternoon and they took me to him. He recorded the conversation, which I have not listened to again. It went something like this. Acknowledge that this is shocking news. This means that they will not be able to cure it but they will be able to treat it. There are all sorts of rungs on the treatment ladder and there are drugs he is using this year that were not available last year. I would start chemo therapy the following Thursday (10 days from then). He would use a drug called Pacitaxel. I would need a CT scan and after that I may have a liver biopsy so they can absolutely 100% confirm that it is breast cancer and they can be sure what its characteristics are, as this would determine subsequent treatment. The primary cancer had been oestrogen positive and he wanted to confirm that it still was. Cancer is a stealthy bastard and it can change and morph and it learns to become resistant to drugs and has been known to change even basic characteristics, like its hormone status.


I waited on a chair in the lobby of the hospital with the breast care nurse, clearly not happy to have me go home on my own. I called my elder sister Clare. Then I went home...

Life after Treatment

Life after Treatment
June 30th 2011

Almost 5 months on from my last radiotherapy treatment – and I have not updated my blog since my final chemotherapy. I had a good 8 week wait between the last chemo and the first radio appointment – as there is a wait in Brighton (there should be only 4 weeks wait). Radiotherapy involved a pre-visit to take all my measurements so they could calibrate all the lazers. The process involved tattooing 2 small dots on me to use to make sure the machine was lined up properly each time. One of these dots is around on my side and I can barely see it even if looking in a mirror as it is in such an obscure position. The other dot (a blue one) is smack in between my breasts. It may not be immediately obvious to an observer not wanting to focus too closely on my cleavage – but I can see it very clearly. My eyes are drawn to it every time I wear something that is even slightly low cut. A slightly odd coloured (very symmetrically placed) blue freckle cum mole? Something for me to remember it all by. I wonder if one day someone with a similar blue tattoo might not recognise mine – and we will give each other a knowing wink.

There was a confusion about whether I was to have radiotherapy 20 or 15 sessions – but in the end I had 15. One a day for 3 weeks (excluding weekends). My appointment times varied each day but were generally towards the end of the afternoon. There was a groundhog day feeling about each visit after the first. I would arrive, get sent to the relevant waiting room (there are about 5 machines so more than one waiting room), sit and wait and look around at the others all waiting. There was a very collegiate atmosphere – huge kindness – we all knew why we were all there. Everyone had their own story. I never spoke to anyone about theirs though – we would talk about all sorts of other things – but not why we were there. The longstanding joke (as I would often meet the same people who clearly had a similar appointment schedule to mine) was to nod to one another on arrival in the waiting room and greet each other ‘Fancy meeting you here’.

The radiotherapy machines are huge, with a laser looking part – which revolves around you when you are lying on the bed (a hard metal bed not a soft comfy one). There are no curtains so you feel quite exposed. As you walk in the room there is the machinery and at least two staff in the centre and to the side (with no curtain) a chair. This is where, in full view, you have to take off relevant articles of clothing (which in the winter can take some time) and then walk across the room semi-naked and climb onto the bed and lie down. I would put my left arm above my head and then the radiotherapists would prod and poke me gently, shuffling me around until I was lined up in exactly the same position each day. This was the longest part of the procedure. They would then disappear into a little room – and an ‘ON AIR’ type light would flash so you knew when the treatment had started. You can’t feel anything but you can hear a high-pitched noise while the laser is shooting radio waves (?) into the right place. To make sure they get to where they want exactly they need to get at it from various positions – I had to stay dead still – holding my breath so I would not be radiotherapied on parts that were not meant to be hit – and the machine would reposition itself. It did this 3 times – and in total the actual time during which the radiotherapy was being administered was probably just over a minute and a half. Each radiotherapy room had something different on the roof to contemplate (my favourite was a picture of blue sky, branches and leaves) – and there was always music in the background. The radiotherapists would then come back in when safe – I would get dressed and it would be someone else’s turn. And on and on.

I was lucky and did not feel too bad through it all – it does make you feel rather drawn – but then I am not sure if this was more to do with the fact I was at the end of 6 rounds of chemo. During the last week I got a gentle sunburnt tinge over my breast and surrounding area (this showed how much of me the radiotherapy was covering – as you cannot feel where it is hitting I was surprised at how much of me it had targeted).

The main issue around these 3 weeks of radiotherapy was the atrociously cold weather. So even though relatively warm – removing your clothes in a big open room was pretty chilly. Worse were the 3-4 days when the snow and ice was so bad that it was not possible to drive anywhere in the city. We had been given instructions about what to do in the event of snow – which were that, if you lived in Brighton, you should get to the unit as early in the morning as you could – as all those from the surrounding area – many who had to travel from quite far every day – would have trouble getting there in the morning and would therefore only be able to get to the unit later in the day. The only way for me to get there on those days was to walk – about hour there and back again. The appointment system basically went out of the window on these days, so the wait was huge. On one day I waited over 4 hours. I was lucky though as I could get there. Many were coming from places which were impassable. Even those living in Brighton, but with limited mobility, had trouble as the council did not even clear the main road that runs up to the hospital. Only the roads directly outside the hospital were cleared – by the hospital.

I finished the radiotherapy about 4 days before my 40th birthday. Which as you know had been planned for many months. It would be a wig party. All but me had to come wearing a wig. Just to make sure life didn’t get too easy for me however – the 18th December was the worst day that winter. Much of the country became absolutely impassable. The snow in Brighton was heavy very early in the morning, but then settled and even started to melt – but not everywhere else.

Most of the day was a series of phone calls from friends and family saying they were unable to come because of the snow. I tried to sound as understanding as I could but through clearly gritted teeth – hugely disappointed. At one point it looked as if even people who lived in London would not make it. My friends from Spain all arrived on the Friday before things got really bad – but many from far closer could not get out of their roads. The party, which we held at our favourite restaurant in Brighton, was just fantastic. So many people I had not seen for so long – nearly a year for many as I had travelled only very little since being diagnosed and since radiotherapy not at all.

That is a small lie. I did travel to Cambodia and Nepal between chemo and radio therapy, but that is different as it was work and I saw only friends and colleagues who I work with. I had read that the most difficult time for many women who have undergone what I have is the time after treatment, suddenly feeling unsure and lost – wondering where to start again – could they just carry on as before. Should they? No treatment, no appointments – just life again. I worked all through treatment (with a few more days than normal off of course) both because I love my work and we had so much on but because it felt normal. But also because I knew that I would have to go back to normal again soon after, so this trip was part of preparing for that also. It was also the first time I had been on my own since diagnosis. I have been incredibly well cared for and loved, but I have had to be strong and together for the children in particular, who were beady eyed for any sign that I might be lying to them by reassuring them that it was all ok and I was going to be fine. The household mood was very much linked to how I was and if I was perky and happy the household was. I was in fact pretty happy all the way through so it would be lying to say I have spent the last few months putting on a brave face, but I did not have time on my own to just think. I had been driven along with hardly time (rather I had the time but it was not the right time) to look back and reflect and just try and work out what it has all meant. What was all that about?!

The party was wonderful and enough of those I love were there to celebrate. Most had not seen me for quite a long time and so had not seen me with no hair. My hair by 18th had grown just long enough to wear without a headscarf. It actually looked pretty funky. It was brown – which I always knew it had become over the years but had never accepted this so had never actually lived as a brunette. Since then it has grown, and not only is it just brown, but it is ridiculously curly too. I look completely different. I have had to say to quite a few people who I know less well, but have known for years, ‘hi it’s Louise’ – as they have simply looked through me – completely unaware that it is me. My mother in law, who also did not see me with headscarves, said the first time she saw me with my new hair that I looked like me sister. Not my actual sister – but it was as if she was talking to a sister of mine.

After the party, we had a Christmas at home but then flew to Egypt for 10 days – to Sharm el Sheik – where a shark had recently killed some poor German woman and mauled a couple of others – so the sea was closed. This felt an appropriate end to a rocky year. We needed time as family to just be, no phones or blackberrys, work or school or doctors/nurses – just a pack of Uno cards and some time. It was not as warm as we would have liked but food was cooked for us and the only decisions we had to make were about what we were going to do that day. The pools were pretty freezing. I was determined to try and start getting fit as my body was rather flabby and yucky after all the poisons and steroids and lack of exercise, but the only way I could get in the water was to go down the children’s slide. Once you were on this corkscrew shaped slide there was no chance of turning back. We visited Luxor and saw the Valley of the Kings, went on a small boat on the Nile and went on a trip on buggies in the desert. Sharm itself is one long string of hotels catering for relatively cheap holidays in the sun – very little Egyptian influence at all – more of a package holiday fest which huge numbers of Russians.

Back home and life started pretty much as normal in January. The kids went back to school and Rupert and I back to work. I felt physically very well, perhaps a bit tired sometimes. Rupert still worried and worries about me but I am pretty tough. I am taking tamoxifen everyday, some side effects, but not so bad. It is now June. The time since January has flown by. It has been very mixed. On the one hand it was so easy to just slip back into life as normal, but always in the back of my mind was the question What was it about life that got me where I am? Yes, I am always juggling a million and one things – but I am happy. It is hard to describe but one moment I am getting on with normal stuff and then it hits me and I have a little peak backwards – and there is an overwhelming Wow! What was that all about? And then a bit of anger – how dare it interrupt my life so rudely like that. And then – maybe it is telling me something? What is it telling me? Is this where I radically change my life? Was this a sign to clear out and start again – give up working, learn to cook properly so I can bake those cakes I have never been very good at baking? Change career? I certainly learned over last year how many wonderful people I have in my life and how easy it is to be always going just too fast to fit them in and just spend time. But then, I think, if I give up work I will not be me? We won’t be able to pay the bills like we can now and then life would be stressful. I think it has taken me this long to write this because I find it hard to acknowledge, I am not sure I want to think too deeply about it all – although it is difficult not to. I don’t think I block it out I just keep moving forward, possibly this way it won’t catch up. I know I do need to address it, and I have begun to. I have every chance that I will live to a ripe old age. But in the back of my mind is my grandmother’s death from breast cancer (liver) 7 years after her breast cancer – and that is always lurking in the back of my mind.

It is also true that I did consider that I might die. I didn’t do that for very long once we knew how bad (or not so bad) it was – but it was long enough and I am not sure you ever get over that. It is not a bad thing – and I am truly not scared. I used to think I would be, I have always been a bit scared of dying. But in those early weeks when I had only general statistics to go by (and almost daily stories in the media about someone dying from it) I was upset. It has been like pinching a nettle. If you brush it too gently it stings – but give it really good squeeze and it doesn’t hurt. It is lonely as it is not easy to talk to your loved ones about all those thoughts and Rupert and I rarely did. The only person I did was my Aunt, as she had had a more serious diagnosis,we talked about it a lot. Not in a sad way but we would really just explore what it meant and would mean. For her, early on, it was about seeing the garden shed finished and the flowers she had planted. I was working on a 5 year time line – the what if I was one of the 25% that did not make it to 5 years (this is before I had my own individual risk worked out). I thought of Ella who is 14. Were I to make it til she was 19 I felt that she is such a together girl, although devastating to lose your Mum – she has such a steady and strong character and foundation that I believed she would still flourish in life. Tom, still needs me and I wondered if in 5 years he would have grown up and grown stronger and more independent. William is also such a together little boy and I often feel is the least needy of me – he talks the least to me about how he is and his feelings – although he talks to me a lot about something he has read or learnt or watched. Then little Ned – who was 7 – five years would make him only 12. And that is not long enough. I don’t think of these things now – but I have to acknowledge that there were times early on when I did think about them – and when I would go into organising mode and start thinking about how I would organise my life if it was to suddenly be shortened dramatically. For a long while if Rupert pointed out some cottage in the property news as if we might one day live there – I would stay silent - that idea of ‘one day’ seemed under great threat and I felt I could only cope if I kept discussions and thinking within a closer timeframe.

Over the last 5 months my thinking has been different. I do occasionally think what if? I get a twinge somewhere in my body – almost certainly completely unsuspicious – but it just does not leave you – a tiny part of your brain starts to think ‘what if?’. I started to find that what might before have been a mild upset at work or home would take on a greater importance. One piece of work upset me disproportionately. Something I had worked on for nearly a year looked as if it might not happen in the end. This happens in the frustrating world of development and politics – but I felt so furious that I should have given all that precious time to this endeavour. I felt angry that it was upsetting me so much. I felt stressed and then stressed that I was stressed as I worried that this might get all those abnormal cells jumping – and angry again that how dare anything make me stressed. It was a blip but I think it was a culmination of me just coming to terms with what had happened. I had started overanalysing everything (and do still on some level) – particularly what I eat and drink. Do I have a second glass of wine? A pudding – too much sugar? Clearly something in my life had contributed to my cells going mad – so just eating, drinking and living as I had before did not feel right yet I was not ready to go on some dramatic diet – I did not want to be defined by my illness. Eventually I started reading a book I had been given when I was having treatment but I was not ready to read. It was written by a Doctor who himself got cancer, which then came back after 7 years. It is really a book about diet, lifestyle and stress – and I was now ready to read it. It became a sort of therapy. He goes through different foods and talks about the science behind their powers – eg green tea and tumeric (with black pepper) – incredibly powerful at fighting tumors. The basic tenet of the book is that we all have cancerous cells in our bodies – but that most times the immune system just keeps them under control – and that 85% of cancers are avoidable. What we eat? What our bodies ingest – toxins etc? how we live. All so obvious, but he wrote it in a style that is so logical. It was a revelation. Maybe I was just ready to listen. I have not gone mad but I have now taken a number of steps informed by this book and another I am reading – and since then I feel back in control. I feel well and I honestly believe that I have a role in keeping what he calls my ‘terrain’ completely hostile to cancer cells and my immune system strong. The changes I have made are quite simple – but all quite easy to incorporate into life without feeling as if you are depriving yourself of anything (well not too much). These include: changing my deodorant to a non aluminium one; using a water filter; using a stainless steel bottle to carry around water; buying organic most of the time; reducing dairy and using organic where I can (I am not prepared to give up my morning latte); reducing wheat intake – which I did already – and now barely eat pasta and only little brown bread occasionally; increasing intake of non processed foods; grains and seeds; reducing intake of sweet things generally (including fruit juices); using creams and products that are either eco friendly for the house or natural etc for body and face (I have since heard bicarbonate of soda is good for washing hair - so will try this); reducing dramatically meat eating; uping exercise (this is hard but I have to be strict with my time) and I am working on the ‘mindfulness’ bit. One writer suggests that a first step in lowering stress (if you find slowing down hard) is to act relaxed – that way tricking your body so your heart slows, your breathing and the rest of your body also. I am still at this first step. I am fast through and through – so this is really, really hard – but am working at it. I often find myself curling up my toes or with my hand squeezed into a fist or fiddling with something. I do a tense check now when getting into bed – and uncurl my feet and relax my hands. I find my brain less easy to control – but am working that too. It goes ten to the dozen – but when I manage to declutter it I have inevitably forgotten to do something – as a bit like a juggler – if you lose concentration on one call you drop the rest. So I have to learn to do this mindfulness thing and not drop my balls.

The last thing I will write about is my brain. Certainly during chemo, during the days directly after a session, my brain just slowed down. I could think and talk but it was just fuzzy and slow. I began to frequently completely forget words – words of everyday household items and even people’s names which I really should know. I started to learn piano as a way of trying to give my brain a workout. I did my Grade One at the same time as Ned. My exam was during radiotherapy (that’s my excuse) – but I found it completely terrifying and I felt ridiculous. A boy of about 12 was in the waiting room before his exam practising his hugely complicated grade 5 exam piece. Ned, who was 7, was totally unfazed. He went in before me. By my turn I was all in a fluster. The examiner was around my age – made me feel even more ridiculous. She started me on a very very simple piece – C contrary motion – honestly very straightforward. I relaxed a bit and went for it – no mistakes. Then I heard her asking kindly if I wanted to do it again but starting on C? I had blindly looked at the keyboard and started on B. From that moment my fingers started shaking – and I managed to hobble through the rest of the exam. I did pass. I wonder how much she just felt sorry for me and wanted to give me some encouragement to keep going. But I am stuck on doing the scales hands together already. I think this is really old brain and old hands rather than chemo – but I do still have moments when I simply cannot think of a word, or I lose my thread and honestly know I will not find it again – it is as if it just vanishes from my brain. I have tried to read about this as an effect of chemo and there is an effect on the brain – but I cannot find anything that tells me if it goes away. I like to think it will if I just keep doing some brain exercises to keep those synapses rejoining and sparking and jiggling.

Apart from my frizzy brown hair, I feel me – just a slightly different me. I feel calmer and am more focused about taking the right steps to deal with situations in a way that will keep me calm and detached where necessary. I feel different – deep deep in my soul different. I marvel at how lucky I am and wonder if all of this was one big lesson.

Cycle Six – September 30th

Cycle Six – September 30th

Before I report on how cycle six has gone I felt I could not do so without giving you a rabbit up date. Poor Ned woke several times the night of Smudges death wailing ‘why did she have to die?’. He was desperately distressed about the idea of burying her and wanted to know why we could not just keep her in the garage. If we were to bury her he would never be able to stroke her again. I said if we leave her in the garage she would rot and become filled with maggots – but he reckoned that that was going to happen underground so what was the difference? We left the conversation for Daddy to come home and anyway I needed to get them to school so they stroked her one more time – washed hands – and left for school. With Ned so teary I wrote a note to his teacher to explain why which he took in with a picture of Smudge.

I was slightly concerned that Smudge might actually start smelling so rang my Aunt, who worked as an A&E nurse for most of her working life, for advice. She agreed that there was a chance that might happen and we agreed it would be wise to put her somewhere cold. Of course the only cold place in the house is the fridge. I bagged her up multiple times to be sure there would be no contamination, cleared a shelf in the fridge, and placed her inside. I then set my alarm to remind me to remove her before anyone got home and to give her time to warm up to room temperature.

The children all arrived home from school. Each of them wrote a little note to Smudge. Tom’s apologising to her for not playing with her as much as he could have. Ella’s remembered the day we got her (we were only off to get a guinea pig but Smudge and Gizmo would only be sold as a pair) and Williams saying thank you for being such a nice rabbit. Ned had already copied a little prayer out of a children’s prayer book. This was in fact rather an exaggeration. She was pretty aggressive and while she was nice and furry she did not particularly like to be stroked and thumped angrily if we invaded her personal space. Ned was the only one who was actually brave enough to pick her up – and often climbed right inside the cage to do so – usually when we needed to box them up to take them to their holiday home when we were away.

Ned had clearly had a very distressed day. He had sat in the special chair all day and had told the class about Smudge. He had drawn a picture of her and attached an envelope into which children in the class deposited little notes they had written to Smudge. I spoke briefly to his teacher at the end of the school day and it had clearly been traumatic for not only Ned but for the class. So much so that one of his friends, an animal lover who had been due to come and meet Smudge, had got so distressed at the thought of Smudge dying that she had to be taken out of class. The teacher called her mother, a friend of mine, who when she heard the teachers voice, calling her on her mobile, imagined something dreadful must have happened. The teacher started the call in somber mood ‘We have had some very sad news’. My friends heart jumped – Who could have died? Has a teacher left? Is someone ill?. ‘Ned’s rabbit Smudge died yesterday and everyone is rather upset’. I since had calls from other of his friends mothers who had heard the story from their little darlings. Smudges death had become a community affair.

The Burial

Ned sobbed through the afternoon. When Rupert arrived home we revisited the burial idea which was just too much for him. Rupert snuck into the garden to dig a deep hole and we went and chose some items to accompany Smudge to the afterlife. Some small plastic toys. A carrot and some beans. A picture of Gizmo and Smudge and the letters from the children. We wanted to keep these but they refused. We considered digging it all up afterwards to retrieve them as they were so sweet – but decided against it as it was dark and cold by that time. We stood round in a circle with a candle and with Gizmo and the children read their letters and we each shared a memory of Smudge. We put the lid on the box and lowered it into the ground – Rupert then covered it up. By this time Ned was hysterical – he threw himself on the grave bawling.

That night we stuck some more pictures of her by his bed and told him how happy she was now bouncing around in Rabbit Heaven with all the other rabbits. This has begun long protracted discussions about what happens when someone dies. I am not sure I am very good at answering this question. ‘What happens if you have no body?’ ‘Daddy is the oldest so he will die first and then I wont see him for ages.’ And on and on.

Since then things have calmed down and now we worry that Gizmo is a bit lonely – so the kids are playing with him a bit more often than they used to.

Cycle Six

This was booked for Tuesday 28th September. Rupert was away in the States for 10 days and was not due back until the 30th – but we had discussed this and had decided that with Justyna (our aupair) and my Mum on the day we would be OK. I had also been quite perky through the 5th cycle – particularly the last week – and had even gone into work twice that week. Justyna went home to Poland on Friday early for 4 days and Rupert was in America so I had 4 days, including over the weekend, on my own. Rupert had been badgering me to sort out some help but I didn’t get round to it and also had been feeling good so thought I would manage fine – but by Monday I was pretty shattered.

Mum arrived early the next day and was pretty fantastic. She rustled up a lasagne for the evening and drove me for my bloods. I did feel very tired and so a bit weepy as my oncology nurse Catherine flushed my port and took my bloods. She gave me the very expensive anti nausea pill and said she would call me to tell me when to take it. We left for an hour or so while the bloods were processed. By 12.20pm I had still not heard from Catherine and we were driving back to the hospital. I thought perhaps she had forgotten to call me and so took the very expensive pill. Two minutes later she called to say my neutrophils and white blood cells were too low to give me chemo that day. My neutrophils were 1.17 but they needed to be at least 1.5 (unless my white cell count was 3 or above – but this was 2.4). I confessed I had taken the very expensive pill and we continued to drive to the hospital as I needed the needle and wire attached to my port removed. I was sent home until Thursday with orders to rest.

Mum made sure I put on my PJs and got into bed, she left instructions for the children and Justyna that I was not to get out of bed until Thursday morning and that all children had to be on their best behaviour. She then ran a number of errands and taxi duties taking children to and from after school clubs before she left (having also done my ironing).

I left my bed only once on Wednesday to walk up to my favourite local restaurant to order a steak and chips. I received many concerned phone calls and texts from people who were waiting to congratulate me that it was all over. All undeserved as, apart from feeling tired, I had no particular aches or pains and had just been given permission to lie in bed and do nothing. On Wednesday a friend, who is also a top chef, dropped by one of her delicious meals – so I had a ready home cooked meal for that evening.

Rupert was due to land from Washington at 10am and we worked out that if all went to plan he would be home before 12 and so could drive me to my new chemo appointment if my bloods had come up. I was pretty pessimistic that they would have. I was going to drive myself to my blood appointment – but decided I better go with someone and called a friend who dropped what she was doing and came and picked me up and took me. Rupert texted at 10 from the plane to say that he had just landed. I waited for him and for the call from the hospital to let me know my blood results. He arrived in time. We heard nothing from the hospital for ages and I imagined it must be because they were back and the nurses were trying to contact my oncologist for advice. Nothing so complicated – they had simply been so busy and had not called the results up from the lab. They had just increased just enough for chemo to go ahead – the neutrophils were 1.51 (0.01 above where they needed to be) and the white cell count 2.8. I was so pleased to be finally ending this horrible treatment that I bounded into to the hospital. It was lovely to have Rupert be there for my last cycle – I felt things had conspired this way just so he could be there. He held my hand and talked to me all the way through to distract me.

Lynette came by and we discussed next steps. It looks as if I can get my port removed in 4 weeks which I am so pleased about. It is a constant reminder, it is uncomfortable, visible (it sticks out of my chest), it aches if I carry bags on my shoulder on that side and I cannot lie in certain positions in bed. My radiotherapy is being booked for the week 15th November – I will have to go in before then to have a CT scan so they can work out where to position the radiotherapy. At some point, probably then, I get given two not very tasteful permanent blue tattoo dots to help them position the equipment in exactly the same place each time. One of them is right in between the breasts, visible if wearing even a pretty modest low cut t-shirt.

On Tuesday I had bought a box of cream cakes for the oncology team, a thank you card and small presents for my 2 main oncology nurses. I had to leave the cream cakes even though I left with no treatment. But this time I could leave the card and small presents and say a welcome goodbye – and a genuine hope never to have to see them in that setting again. There was a woman next door to me who was there for her first treatment. She looked so miserable and was very sick during it. I could not bear to go back to the beginning again. My brave Aunt has gone through an additional two treatments to me.

I am in bed two days on. I should feel over the moon but feel rather wobbly – it is never a good time to think too deeply when you are not feeling well so I am distracting myself with audiobooks, writing my blog, my blackberry, phone and of course the children. Rupert is here to look after me and the children (jet lagged and with a sore back – so not top of the world).

With the change in weather two of them (Will and Tom) have coughs and colds so we talk to each other through the door. I just need to get through the next 2- 3 weeks and not catch anything and I will have come out the other end having had, what I think, has not been a bad run for such a horrible treatment. Apart from a few lows we have all done pretty well. Rupert is the real the unsung hero. He has had to keep things together, take on all the extra work at home when I have been under the weather, bear the emotional strain, keep his perpetually stressful job going having broken his foot. Since removing the boot that was used to help mend the foot he has clearly damaged his back and he is in constant pain. But we are a household full of love – so it has all been very bearable.

How long before my hair grows back? I have read I cannot dye it for 6 months, so I will not only have uncharacteristically short hair but it will also be dark (gasp).

That’s it for now. X

Cycle Four August 17th and Cycle Five September 7th

I have really procrastinated posting this next update – partly because it is a bit of a hotch potch (which is how my brain is most of the time these days – ‘chemo brain’) and mainly because I am now feeling rather self conscious that it has become be an interminably boring read! I do apologise if it is….

A week after the 3rd cycle we drove to Wales for a family holiday. My mother took the oldest two with her after dropping me home after my treatment and we followed with the younger two, when I was up to it, a few days later. We spent 2 weeks as a family with my parents and sister and her children visiting castles, agricultural shows, taking walks along the local canal to our nearest town, Welshpool, and we even camped in a field for one night. The north west / south east weather divide which has defined much of August meant pretty miserable weather for the whole 2 weeks but at least it was not cold.

In terms of side effects, it certainly took me longer to feel even vaguely normal. When I feel like a cold beer or a glass of wine I know I am turning the corner. The idea of alcohol up to that point is poisonous. During the third cycle it took 10 days and even then I only enjoyed a few sips. The change in taste is one of the most depressing side effects and during this cycle I started getting a few mouth ulcers. My teeth feel coated and gums sore if I do not keep up a rigorous teeth cleaning and rinsing with mouthwash regime. I understand this to be because the cells in your mouth are those which rapidly divide – so if you get a cut in your mouth it gets better sooner than an equivalent cut on your skin. As the chemo’s job is to kill rapidly dividing cells – your mouth is very vulnerable during treatment. I had only a few ulcers by the time of my fourth cycle but enough that there was a discussion among the oncology team about whether to delay the treatment – they said the presence of ulcers indicated that maybe the level of toxicity in my body was not great and I might need another week to recover. I think actually that had I been more disciplined in my mouth washing I would have kept them under control.

One of the kids favourite activities when we visit my parents in mid Wales is to visit ‘Yum Yums’ in Welshpool. We consider this to be the best sweet shop in the country. It is an old fashioned sweet shop with rows of containers filled with sweets sold in grams. We use the sweets to coax the children along during long walks. I could not eat any of them – no cough candys; lemon sherbets; cola cubes; pear drops – because of my very sensitive mouth .

My cords seem to have just been absorbed as I cannot even feel them now. I didn’t notice this happen. My theory is that my body has recognised that they have absolutely no purpose and just absorbed them.

Finally on side effects - the one that distresses me most now is the bloating I get in my stomach after treatment – it lasts for about 10-14 days but is worst in the early days – and I think it is from the steroids I take in the days after treatment – but also possibly by body reacting to being infused with poison. On top of this as I am less active than normal. I am getting increasingly squidgy where I used to have as least some muscle. Rupert insists, of course, that this simply means there is more to love and that squidgyness is far more comfortable than bone.

I spent a day with my Aunt, who lives close by in Shrewsbury. We were both between cycles (our treatments are 3 days apart). Only Rupert and the kids have seen me with no wig or bandana and only my Uncle has seen her in her bald glory – but that day we rolled around laughing as we removed our wigs – we looked liked pixies. We have a fantastic series of photographs – one with our own wigs on, one with no wigs on, one with each others wigs on and one with both of us in scarves. It still seems unbelievable that we are both going through treatment at the same time – almost to the day, I am sure I have said this before. We have long and frequent conversations as we go, comparing our white cell counts, type of anti nausea regimes and generally keeping each other going. She has now only one cycle left – but will have had a total of 8. In fact – it has taken me so long to write this that today was in fact her last treatment! She is twenty years older than me and has been incredibly stoic all the way through – although she has been plagued by infections and complications and has been hospitalised at least twice over her treatment.

Her response to the chemo has been as good as we could have imagined. When we heard her diagnosis earlier this year we did not know if she would even make the year but the chemo has killed all traces of live cancer cells. She will need careful monitoring but her prospects are so hopeful that it is hard not to feel excited about it. I had always had a vision of us eating cream teas as old women – her in her 80s and me in my 60s – nattering about nonsense. When she was diagnosed I berated myself for all those missed opportunities to spend time with her being so busy with work, children and life. I raced up as soon as I could to spend a weekend with her trying to claw back some of the time we could have spent. This was before I was diagnosed and before we had known how well she had responded to treatment. It is hard to believe we are nearly at the other end, and while we don’t know if and for how long she will stay clear – there is a real chance that it might be for many years.

Before I lost my hair I was certain I would wear my wig most of the time. I thought that with a bandana it would be obvious that there was something wrong with me which would draw attention I need not want. In fact I feel I draw more attention with a wig on. I am certainly more aware of it and walk around imagining a big cardboard arrow pointing to my head – with bubble ‘Yes it’s a WIG!’. It is slightly uncomfortable to wear, you need a mirror to adjust it, and for most daily activities in the home it simply feels ridiculous wearing it. The few times I have worn it out in public I feel acute embarrassment – as if I am wearing a Minnie Mouse bow. We spent a night with one of my oldest dearest female friends and I wore the wig on Ned’s request (he is the only one who asks for me to wear it) – and wept in humiliation when I saw her. I felt fake and ridiculous.

I wear instead scarves or bandanas – mainly a brown bandana designed by Trend Co (the chain that makes wigs and accessories for people suffering hair loss) – and it is very comfortable. If I wear sunglasses with it (which I do at every opportunity) it covers my eyebrows and eyelashes – and makes me look (at a stretch) like some very stylish person. I could also though be mistaken for a muslim convert or a traveller. While we were in Wales we went to a rural agricultural show – very rural, very white. I was not imagining the shifty looks from passers-by clearly trying to work out which of the above I was – style queen wanna-be (urbanite from down south) muslim convert or traveller (none of which fitted in comfortably with the crowds milling around the livestock and largest courgette displays).

My eyebrows are still partly in tact, and I have many eyelashes on my top lid, not so many on the bottom lid. I have not removed my eye make up for weeks as I end up pulling out depleting lashes. I look like a bald panda in the mornings. My hair has not all fallen out – about half of it possibly but I still have a good head of stubble (which actually grows and could in fact do with a cut). The problem is that it is not evenly spread over my head so I have bald patches on either side where I sleep and a band across the top. I still have to experience the effects of cycle 5 and 6, so may lose the remaining eyebrows and lashes, but I think I am going to be left with a good lot of hair by the end. Despite this I will need, at some point after cycle 6, to take a trip to Chris the hairdresser to cut it so that it is all even before it starts growing back properly.

We left the children with my mother while Rupert and I drove back down to Brighton for my fourth cycle. The days immediately before are a taste of normality – but with a big hour glass in my head counting down until my next treatment. I don’t like to talk about the next treatment or even think about it in any more than practical detail. I quietly count the hours in my head the day before – and eat and drink my favourite things while I have taste. If I have a coffee that is not perfect I feel completely cheated knowing it will be a while before I will experience that enjoyment again.

I was tired on the morning of cycle four. We had arrived late as a section of the M40 motorway was closed diverting us off our route. We went via my cousin for supper as we were diverted almost past their house. This was a wonderful unplanned surprise – but it meant we arrived late and I felt particularly tired when I woke up. As I got myself dressed, making sure to wear a top that gave access to the port, I felt waves of nausea just in anticipation of what was about to happen. We drove to the hospital for my port to be flushed and for my bloods. The deep nausea simply grew with every step – my mouth started salivating as it does before you are sick. I gave blood and we left for an hour or so while they processed it. They were concerned about the ulcers in my mouth as there was some talk of delaying treatment to give me another week to recover. Luckily they did not. I am very clear about when this will all be over and the idea of extending it by even a week would be hard.

This is the first cycle that Rupert has taken me to. It was new and distressing for him. His style is, of course, different to that of my mother. Mum is more stiff upper lip, mind over matter and it will all be over soon. Rupert was more attentive, which together with the terrible nausea I was feeling, and that I was tired anyway – started me weeping. Even writing this makes me picture the drugs being prepared and slowly injected into me, my stomach lurches at just this image. Once I had started weeping I then could not stop. Lynette (our macmillan nurse) dropped by in the middle of all of this. The last time I saw her during treatment was on my first cycle just after they had put the cold cap on – so we had not talked much. It felt like the whole team of lovely oncology nurses were popping in to do or say what they could to stop me crying. In the end I was prescribed a relaxant of some kind. I explained that really I had been coping very well, it was just that the anticipation of it all and knowing what I would go through the following days, together with Rupert being so loving that had made me drop my guard. A bit of crying, I believe, is quite cathartic anyway. They gave me the same relaxant pill to take home with instructions to take it even before I get in the car for the 5th cycle.

The fourth cycle did not feel like past half way, it felt like the beginning of the harsh climb to the summit – cycles 1 – 3 were the foothills. My recovery after cycle four was much slower – and I am not sure I really felt anywhere near normal throughout the first 2 weeks. The third week was a bit better, although I got a cold and a cold sore (I have not had a cold sore in years). I went into work a couple of times to hand over a a few things as I will take much of September off and all of October.

The last cycle is on 28th September which is now in my sights! I had my fifth cycle 3 days ago and feel no worse than after the 4th cycle, I think I may be coping with it even slightly better. It helps that the kids are back at school so we have more structure and I can bury myself in my bedroom for long periods uninterrupted, surrounded by books, papers, computer – snoozing when I need to.

I have to drink 2-3 litres of water after each treatment – which I find incredibly hard. Not only does my changing taste affect the taste of water, but the sensation of it filling my stomach when I am feeling nauseous is grim. The flip side is that I like the idea of it flushing through my liver. My skin takes on a yellow tinge the couple of days after the treatment – very unnerving.

My mother came again to take me to the fifth cycle. We have a nice little routine. We get to catch up on family gossip, she chivvys me along and bustles me out of the door as if we are going on a shopping trip. I took the relaxant before we got in the car – and I think this made a difference to controlling my anticipated nausea – which is completely outside of my control. My body knows what is coming, is familiar with the tell tale signs that it is about to happen and simply rejects it. Yesterday we watched a BBC documentary on the use of e numbers in food and there was a scene in which there was a small experiment involving a red liquid, in a large syringe being used in some taste test. The syringe and colour of liquid was identical to one of the drugs I have and just seeing it threw my stomach, even writing about it me brings me back – so I will stop. The power of the subconscious.

I have now only one more treatment to go. I can scarcely wait – to be out of this cycle of living – 3 weeks at a time and within these 3 weeks we live week by week – with week one being very bed centred – including the first weekend, then I become a bit more adventurous, but this has changed as the cycles have gone on – and finally the third week I can be quite normal with a sleep as and when I need a quick lie down. My taste starts to come back and I get a taste of my own self only to start the countdown again. I cannot wait to just go swimming, to eat and drink normally, to sleep deeply not fitfully, to be rid of an underlying nausea. The tips of my fingers and toes have started to lose sensation after treatment. My body just wants to get back to its old self. It will not quite be the same – my scar still hurts, especially where the lymph nodes were removed and I will need more surgery next year – but that seems so far away and will be a walk in the park compared to chemo so does not worry me at all. I will of course need an operation (albeit small) to remove the port – but that day cannot come too soon. I imagine they will not want to remove it until after all my radiotherapy is over – so possibly not until next year. The radio is booked in for about 5-7 weeks after my last chemo – so probably mid November to mid December – to end the week before my big 40th birthday. What a year!

Endnote – Death of a Rabbit…

I was due to post this today but something happened that I thought I would share. Some light relief (or not) from the trials of chemo. Smudge – our black and white giant female rabbit, who lives with Gizmo – an albino male guinea pig, died this afternoon in Ella’s arms. She had been losing weight and was looking very miserable so last week we took her to the vet who concluded she had ulcers in her mouth from her teeth growing too long. After a cool £150 operation to file her teeth she came home, still weak but looking more perky. Over the past few days though she has looked more and more forlorn and this morning I was so concerned I rang to make another appointment with the vet at 5. Ella found her when she got home from school pulling herself along, she picked her up and after a bit of pathetic twitching Smudge gasped her last breath and went limp.

I was not in the house and received what can only be described as a completely hysterical phone call – Tom had been ordered by Ella to call me as she was worried about Smudge but while on the phone to me she breathed her last breath so all I got was lots of loud wailing and hysterical shouting ‘she’s dead, smudge has just died she’s dead’ – all four children were bawling their eyes out. I raced home and arrived to what looked like a wake – Smudge had been laid out in Neds den in the garden and Ned was sitting on a chair stroking her, tears streaming down his face. William had run up to his bed and curled in a ball crying, Tom was being relatively calm (the impact hit him later that evening) and Ella was hiccoughing with tears while trying to describe what had just happened.

We have since had a rather traumatic but in someways amazing evening – talking about death and what happens when you (or a rabbit) dies. We put her in a shoebox and Ned covered her with petals (she is now rather unnervingly in the box at the end of my bed which Ned is sharing as Rupert is away). They observed rigor mortis – (clearly the soul has now left the body which was no longer working for her and she – ie the soul – has gone up to rabbit heaven to jump around freely with lots of other rabbits while looking down on us being so careful with her body). All evening we have discussed death, what happens – the realisation that they will never see her again once we have buried her when Rupert is home tomorrow. I have had long conversations with each child about death and illness – all different reflecting their different ages. Ned wants to know if you can feel when you are in heaven, and thinks he would be lonely. Tom talked for ages about his fear of dying but also of realising that he does not want to live forever either – and about one of us dying. Cancer has featured highly and why do so many people die of it. We had a long conversation about how people of different religions understand death and afterlife – and the benefits of knowing you are going to die so you can prepare vs dying in your sleep. Poor Ella cannot get Smudges last pathetic movements out of her head but we talked about how Smudge must have felt secure when she picked her up and let herself go. It has been a fascinating evening – an exploration of life and death. I wish though Smudge was not in my room in a box.

The kids are planning the funeral – what they will write, the headstone (!), Ned has a teddy he wants to bury with her and we have already debated the benefits (or not) of burying her with food. I meanwhile am more concerned by the digging habits of Max the dog – and wondering how we will manage in our small garden to dig a hole deep enough that will not invite Max to dig up again. Freshly dug earth is like an invitation for him to dig and we already have an ongoing Rupert vs Max routine – Max digs the hole – Rupert tries to reprimand Max with strange disapproving grunting noises, Max looks confused and shirks away – only to return another time to continue - the urge to dig simply too powerful to ignore. But I will let Rupert work out the logistics of the actual burial when he is home – I will work with the children on the other important details - the flowers and content of the ceremony. It is late now and I must go to sleep…


PS – I have not returned to the reflexologist – but as her shop is on the main route to town I have to shirk past it with my eyes to the ground too cowardly to tell her really why I am no longer coming to her – all I wanted was a foot rub – not a mind scramble.

Hair Loss and Cycle Three

Hair Loss and Cycle Three (27th July 2010)

Just as I had predicted the end of last week saw the rate of hair loss increasing. My head itched so badly and hair started coming out in the twenties of strands. You could pull out a minature pony tail with a gentle tug. I knew I was going to have to take control – and felt quite down trying to work out when and how. Then it all came together. I had Ned’s farewell from infant school show on the Thursday so I wanted to have hair for that, then Friday was the last school run (I wanted to avoid facing parents at the school gates with a wig) and I managed that – although I did wear a scarf that day as I had a few bald patches and the hair that was left was simply dead and bedraggled. I could feel quick glances of Mums I know as I passed – I know they would have all been sending me the best vibes but I could not look up from the ground and walked with my scarf and dark glasses avoiding contact. It was going to have to come off that night. Just moving my hair on my head had started to hurt.

I had another reason to get it over with. At work we had put in a major proposal for a piece of work in Africa which I am down as the Programme Director for if we were to win it – and we were shortlisted and called to present in front of a panel of 6 – on the day before my 3rd chemo cycle – so the Monday after that weekend. I could not risk leaving what hair I had left til Monday in case it came out on that day in huge swathes – and I needed time to practice with my wig given that I was going to be one of the presenters. This was a horrible prospect – going on an train early in the morning, then into work to see my work colleagues and then to present in front of strangers in my wig – for the first time. This is not how I would have chosen to have stepped out for the first time in this way.

Once I had picked the kids up I started preparing them for me losing my hair. I showed them how it was coming out so easily and they all had a go at pulling out a few handfuls – to much amusement and recorded by Ella who is taking a photo diary of the whole process. Tom was the one who was upset by this but he did in the end have a go. I needed them to see why I was about to cut it all off – as it was all coming out anyway. Then Ella and I went upstairs to the top bathroom with a towel, pair of scissors and camera. We actually had great fun – Ella was far too enthusiastic. We set it up so she could take before, during and after photos. She just went for it – we tried to collect the longer strands in a bag for safe keeping and had another bag for the shorter strands once she had got closer to my scalp.

We had one ear cutting incident – I had been warning her to be careful around my ears and she had told me to stop fussing she was fine. Until she snipped me drawing blood. It wasn’t too bad but it did give her a shock and she calmed down a bit. She had been getting a bit giddy with the excitement of being allowed to cut a whole head of real hair off (and document the process in detail by camera). The end result made me look like a convict – with variations in lengths mixed in with small bald patches (and then of course the bleeding ear). It was not as bad as I thought and in some ways was quite liberating. I don’t have any strange bumps on my scalp which is quite symmetrical. I had imagined I would have a parting of some kind – I am not sure why – but I do not – I realise this is only created when I have longer hair and pull it to one side and it is not actually how the hair grows on my scalp which is quite evenly spread. Looking in the mirror reminded me of the Sinead O’Connor album cover (although she has far bigger eyes than I have!).

We had been invited to a goodbye party for some neighbours who are leaving to work in Singapore for 2 years – so Ella helped glam me up with make up and then we put on my wig. I realise why I need the scarf – firstly it looks more natural - it also helps keep it in place but it also covers my ears which stick out as they are pushed out somehow by the part of the wig sitting behind my ears. All wigged up I went to change – at which point I learnt my next wig lesson. The wig needs to go on last. So – rather than take it off, change and re-adjust it all again I went round as I was – (with lots of little bit of hair stuck down my back and front from our hair cutting session but luckily it was dark enough at the party for no one to notice). I felt very conscious – few people knew and even fewer of those I had seen earlier in the day would have guessed what had happened – I suddenly looked rather glamorous (as you do not buy messy fluffy wigs). I did not stay long but it was good to step out.

That night I was not sure what to do - my Aunt had told me about these little towelling caps you can wear at night so that if you need to go to the loo or the kids come in you don’t feel so exposed – so I wore a blue cap that night (and felt rather stupid in it). The next day I had another look in the mirror at this convict cut and rang Chris the hairdresser for an emergency appointment. I went over to him that morning and he tidied it all up in the back of the shop with proper shears (cant remember what they are called) – with a number one. This made it look a little less mad. I introduced the boys to my new head that evening – to get them used to it as I realised I would never be able to cover my head from them for the next 3 months so they had better get used to it. Tom said I actually look quite cool, William was very quiet and Ned simply said – urrrrr (as in yuck). But they stared and had a stroke. Ned wanted to know how long until it would be until it grew back again, and he repeats this question daily. Recently he has been coming up to me and spontaneously hugging me to tell me he thinks I look pretty even without hair.

My first trip out in the day light was not with the wig but with a bandana and my sun glasses of course. I felt fine and confident actually – but people do look – but I don’t mind – I feel more real with a bandana than the wig – which is strange as I had thought I would only go out with the wig. It turns out that the wig is a bit uncomfortable – and I feel ridiculous in the house doing normal household things wearing it – so I don’t. I did though go up to the presentation on the very early train and then into work and then to the panel who we were presenting to. I think people on the train were focused on their normal routine and so I felt no great stares like I had imagined. I sat there serenely looking out of the window through my dark glasses. Then I had to go into the office – this was more trying but it was bearable with lots of warm feelings all around – and once we got preparing for our presentations I forgot I was wearing it. Finally at the presentation – one of the women had met me before but I think was confused – something was different but she would not have been able to pin point quite what and then the others I am sure had no clue or where thinking about something completely different. So all in all the first outing was not too bad – but it was a warm day and as soon as I could I took it off and replaced it with a bandana and travelled home wearing one of these – far more comfortable. Rupert had had to go to Canada for a day and so was not there that evening – but returned on the day of my chemo – early in the morning – just in time to see me go. He has finally had the boot taken off his broken foot. He has had to get used to walking on it again – his muscles had really wasted and walking on it was painful to start with – but he is doing well now.

I have missed out one piece of the story. The day Ella cut my hair off I went to the sink to rub my head to get all the loose pieces off and to my horror a nit fell out (a dead one – poisoned by the chemo no doubt). It is hot right now and the children have nearly all been infested (this is what happens at school in the UK these days nits are an everyday issue and I am constantly de nitting children (it can be rather therapeutic) – I usually escape but clearly not this time and when I do get a nit my head usually reacts terribly with all over itching (could this have explained the terrible itching I had been suffering the week before). The next day after coming home from the hairdresser I did the same again – and another 2 fell out…gasp – the horror. I wondered with embarrassment whether maybe Chris had found any but had been too polite to say so. Had I known that that was what had been causing the itching would have been bad anyway as my hair would never have survived the nit comb – so shaving it was the ultimate cure. But can you believe that – I had nits and that is why my head was so unbearably itchy. What ignominy! I am now very certain that I do not have nits as none could possibly hide in my rapidly disintegrating stubble. I had a bath last night and rubbed my head and so much came out that Rupert – who washed out the tub after me did not want me to see it. He described it as a veritable river of stubble. Then last night I had an uncomfortable night – and in the morning my pillows were covered in the stuff – and my head is looking more bald than stubbly. I have lost a few eyelashes but my brows are still there.

The third chemo was 2 days ago – my haemoglobin is down from 12.4 when I started to 10.9 – I get quite breathless. The chemo was more straight forward without the cold cap and I was pleased I did not have to consider this anymore. My Mum came down again to take me – they take my bloods in the morning and then I go away for a coffee while they process them and go back at about 12 for the chemo. I was given the magic anti nausea pill – which has made such a difference. I went straight to bed when I got home and then yesterday day one after the chemo – while I felt wiped out I did not have that all consuming nausea, so was rather over the moon. I even walked the dog twice and was really quite chirpy under the circumstances. Last night though was not so good and I feel pretty rough today – but not the nausea like it was and I am grateful for that. I have stayed in bed most of the time – thank goodness for wireless.

Ella and Tom have gone to Wales with my mother and we will follow on Saturday when Rupert starts his annual leave and I am ready to travel. I am trying to work out if I can have the next chemo (due on 17th August) up there somewhere – otherwise we have to drive all the way down and back again in the middle of the month.

Before I sign off I wanted to list all the wonderful things people have sent and done as I have been overwhelmed by the love and presents and I want you all to know how much of a difference it has made:

Flowers – forests of them
Organic dark chocolate and other goodies
Neals yard packs of spoiling smelly pure oils and bathwash and amazing non chemical deodorant (never used it before but highly recommend – Lavender and Aloe Vera)
Books – to read to pass the time and cook books – what to eat during chemo; plus more how to live with cancer and after cancer type books with meditation cds
DVDs
Instructions about diet and healthy living
Letters and cards full of lovely words and messages which I have near me in a little box.
Scarves/bandanas
Nightdress and beautiful wrap
I have even had a Medicine Puja for me at a Tibetan Monastery in Nepal to coincide with the day of my surgery

With love Lou

Cycle Two - 6th July 2010

15th July 2010

Cycle Two has been more of a challenge than Cycle One. The actual process was somewhat more horrendous – simply because I knew what was coming.

My obsession for the few days before the session was the cold cap - no cold cap dilemma. Time was ticking and I could not decide what to do. What I did decide was that I would make up my mind on the day. In fact I did not decide until literally as I sat down in the chair ready for the oncology nurse to wet and condition my hair, cold cap machine (machine of torture) sitting ominously next to me all revved up and ready to go – pink cold cap gently steaming frozen air. I have, no doubt, bored a number of you with my obsessive musings about what to do. This included my children and my mother.

My friends and sister were quick to pick up that, deep down, I was clearly having trouble and did not want me to go through the torture. I wonder whether also some vague interest in wig wearing was behind their easy support for the hair loss route (as well of course as a concern that I do not suffer unnecessarily). My mother and children on the other hand (except, I have to say, Ella who I think falls into the previous no cold cap camp) were clearly favouring the keep my hair – grin and bear it route. While my mother, to be fair, did keep repeating the ‘it has to be your decision louise’ line – there were sufficient ‘mind over matter’ type comments spattered through our conversation for me to work out where she sub consciously stood on the matter. My husband, I truly believe, wanted whatever would make me most happy/least distressed.

I sat in the chemo room deliberating far too long on this matter, with a roomful of people watching and waiting for my decision. I simply think that deep down there was something monstrous to mum and the kids imagining their daughter/mother with no hair.

In the end I did not wear the cold cap and once I had made this decision I felt relief. Three and half hours with a freezing hat on seems so little a time to put up with - but it is not just this that is going on – in the meantime those horrible drugs are being slowly infused and it is the combination of the two that makes it so unbearable. Making the decision meant I could not go back – I was actually making a decision that would mean that in the coming days I will lose my hair – and that was hard.

With the decision made my cold cap-no cold cap obsession has been taken over by the process and anticipation of hair loss plus my disbelief that this should have been such a focus for me. Why is losing my hair such a shocking prospect (at least for me it is)? Part of my daily routine now is to run my fingers through my hair and catch the growing number of lose strands that come out so easily. Partly I think I keep repeating this action to check to see if maybe it has stopped – or confirm that it is really happening. Partly it is to collect the hairs before they fall on my shoulders, the floor and in my food (which happened for the first time yesterday). The slow release of hairs on my head is definitely growing in momentum and I now compete with the dog’s hair shedding. Our bedroom floor collects short black dog hairs and longer human hairs. My head itches incessantly and in my calculation I will lose the bulk of it the Saturday after next when I am supposed to be at Chessington World of Adventures (a theme park) for Tom’s 12th birthday. You can, I am sure, picture what I am envisaging….racing round on the Dragons Roller Coaster, being flung upside down and whoops….a shower of hair falls dramatically onto the crowd of spectators. A déjà vu of my convertible moment. I have started to dream about it. The mechanics of how it might happen fascinate me. How does it all fall out so suddenly? My Aunt said that on the day hers started to come out she went into the shower to ease the rest off and had to place a sink blocker over the plug hole to catch everything. She then cut/shaved the rest off so as not to look completely mad with random strands over the head still attached.

I have been considering an action plan. Do I trust Rupert to shave remaining hair off my head? I love him – but no I don’t trust him to do it, mainly because we do not have the right equipment. So – do I, on the day it starts coming out properly – stuff it all in a scarf and race to our local hairdresser and ask for them to shave it all off. I think if I did that I may shock the gentle gay hairdresser who last cut my hair short and who has never dealt with this sort of thing. Perhaps I had better go in and talk it through – as I may need an emergency slot. I am not sure ‘sorry the only appointment we have is next Wednesday’ would quite do.

Why am I so certain my hair will go? Most women on the drugs I am on do lose their hair – although I do hear the odd story of someone who didn’t and them swearing by some remedy or supplement that prevented this. One of these being that flax oil I keep talking about. I have tried, oh so hard, to keep up my flax oil in take but it simply makes me want to vomit so I am not sure I have ingested sufficient quantities to make it work on my hair. The more personal and compelling evidence is the loss of hair elsewhere. My under arms are wonderfully smooth and I have not touched a razor in a week. My leg hair also does not seem to be growing. And very soon I may well have my very first Hollywood. I find this rather disturbing.

Back to now. And more on wigs. So – once the mechanics of hair loss from my head have run their course the next thing is wig etiquette. I have been looking at my wig daily – it sits on a model head on my dressing room table in my bedroom. It has had one outing and that was the day I bought it. The prospect of using it for real is looming. On the one hand I feel deep embarrassment at even the thought of having to face the world with this. I am sure I will get used to it rapidly and by the end will be so confident in it I may go wig mad and get a few radically different versions. But I am not there yet – I will have to walk out and face the many people and friends I know locally and will see on a day to day basis, then there will be facing other friends and family for the first time in dribs and drabs over the coming weeks. Today was particulary windy and as I walked to work I thought first ‘would this wind be strong enough to blow hair off when it is ready to go?’ and on then I thought ‘what happens to wigs in the wind?’ I will have to practice putting it on tightly enough so that it can withstand sudden blasts of air. I noticed that in the pictures of Jennifer Sanders at Wimbledon she was wearing a wig and a scarf. Hmm – is that the technique – wig on and then tie it on tight with fancy scarf. Or was it just fashion? The other thing I know I will have to be careful of – and this is a lesson from my Aunt who is beautiful in hers – and now a real pro – is that I must remember that it is not a hat and not to adjust it in public. She says it is very tempting to stick your fingers behind your ears up under the wig and pull it on tighter and move it back into position if it has shifted and that once wig wearing is second nature and becomes part of your everyday routine it is easy to forget yourself when out and about.

Cycle Two has hit me harder than cycle one – which is not unexpected but still not enjoyable. I was nauseous even before the slow dribble of drugs into my port began – just the thought of it made me wince. I went to bed virtually as soon as I got home that day and felt so terribly bad – nausea being the worst all consuming feeling –I lay their rocking and complaining. Ella came to sit with me during some of this time to distract me and tell me cheerfully that I knew it would be bad and that this was good bad and that I knew it would go away so to stop complaining (in the nicest possible way). I rang the oncology nurse hot line at a point when the nausea got so bad I could not bear it and wanted drugs that might work better, but no sooner had I got through and given them my name than I was violently sick and had to hand the phone to poor Ella to talk to the nurse (or rather just inform her that I was currently being sick and so could not talk). I felt better afterwards. It is normal for the side effects to get worse each time but I suspect I also aggravated the nausea by making myself my flax oil (there it is again) banana and yoghurt milkshake (yes the one that gave me an infected nail through a rogue piece of brazil nut) just before going to my room after getting home from treatment. I did this as I thought I had better have it before the nausea really set in as last time I could not stomach the famous milkshake for at least a week. My reckoning was get it down me before I get to that point. Well it went down and then it came up again. My lovely Ella then raced around emptying the sick bucket, wiping my face, getting me my tooth brush and tucking me in.

This time it has taken me until today to feel better – that is well over a week since the treatment, nine days ago. The nausea went on Tuesday (a week after treatment) and I have felt much more tired until now and have used my bed as a base. When the kids are at school I work and communicate from bed. It has felt rather like it does when you are getting over flu and you try to do something but get an overwhelming wave of exhaustion you have to sit down. This in practice has meant a few tetchy moments with the kids (and a few tears begging them to do what they are told first time they are asked). I have certainly been more short tempered and less patient, and the kids have noticed. In one set too Tom accused me of being more grumpy ‘since you got cancer’. Rupert continues to hobble around in his Beckham Boot, brings me tea and toast in bed every morning and balances his job and role as primary carer for the kids when I am out of action. The levels of stress in the house do go up and down, particularly when he senses one of the children is not doing what I ask them or are answering back or not clearing up after themselves. He does not want me to have to have any stress at all (which is difficult in a big family) but we are doing OK.

I visited the reflexologist again for a relaxing treatment. She has asked me to note down any changes I experience after the treatment– and I am searching for what to write. She wants my next session to be longer so ‘we can have a chat’. I have to admit to texting her today to delay the appointment to next week. I cannot tell you how much I really do not want a ‘chat’. I just want a nice relaxing foot treatment and I am too much of a chicken to say so. In any case, if I did that would confirm, in her mind, that I am blocking my mind to healing.

I have had all sorts of advice directly or through literature (books and the internet). Laughter is apparently very healing – and one person was allegedly cured by watching funny DVDs non stop. I am sure laughing releases alls sorts of positive energy but I would say I laugh quite a bit already. I am not sure I could fit more laughing in without attracting attention and I am absolutely certain it should not be relied on as a primary healing strategy.

Rupert Ella and Tom are flying to New York on Sunday for Sally Ann’s (Truly Scrumptious) 80th birthday and I am completely devastated that I cannot go. We had the tickets booked for all four of us to go before I was diagnosed and we have had to cancel my ticket. I cannot risk catching something on the plane and think it would be difficult to get insurance while under chemo. We could not risk going without insurance as I would inevitably pick something up and end up with some eye watering American health care bill.

My cords are still there restricting my arm movement, my port and the wires to the vein to my heart are becoming increasingly uncomfortable and I am not looking forward to cycle 3 on 27th July. Given my reaction to cycle two I have been prescribed some new anti nausea drugs by my oncologist which I am hoping will lighten the load. Importantly today I feel pretty good!

That’s it for now. X

The weeks after cycle one June weeks 3 and 4

The week after cycle one

I would like to say that I stoically and uncomplainingly withstood the first 6 days of side effects of cycle one - but I did not. I lay in bed quite a bit feeling sorry for myself, I wept a few times, I could not muster the slightest ounce of bravery to help distract me. I simply felt nauseous (all the time) and like I had the most terrible hangover but one that would not go away. My taste went funny as my mouth turned metallic and dry. Even sleeping bought not respite – it was not a relief from it but I slept in spite of it waking on and off to be reminded it was still there. Apart from the first day after I did get up and get dressed and did a few little trips to walk the dog and to go to the local hair dresser (more on that later) and it felt better being slightly busy as it distracted me. Then on Sunday I woke up feeling ever so nearly normal and the relief was just huge. I was not going to have to spend every day from now until the end of treatment feeling like I did in those early days – and with that feeling of elation I started to feel just that little bit brave again. I have now started my strategy for dealing with round two slightly better. My theory is that the more distracted I can be (whether it be meditation tapes or DVDs) the quicker the time will go and eventually the nausea will go. I think I can cope with the other many SE – fatigue on its own is fine (as long as I have help with kids and can go to bed when I need to – which I do and can) – but nausea is just unbearable. Particularly as it mucks with my appetite and I do love my food so anything that means I cannot enjoy my food distresses me.

I have started making myself daily milkshakes from banana, yoghurt, honey, and flax oil. I have been informed that flax oil works miracles on all sorts of fronts – so I ordered some as what I have read about it seems convincing enough. But it was in the preparation of one of these that I suffered my first injury which resulted in a visit to the GP to get antibiotic cream as it did not heal. I decided to cut brazil nuts into tiny pieces and mix them with my healthy milkshake. In the process I got a piece of brazil nut shell caught under my thumb nail. This would normally have, I am sure, had little impact but in this instance became infected and resulted in a trip to the GP on the advice of Lynette. Apparently some people are plagued by minor skin infections on their hands during chemo and with lowered immunity they can turn quite nasty. How dangerous can making a healing milkshake be? Clearly in my case quite dangerous.

The oncology nurse had said that my hair was too long and that I needed to cut it – as this would increase the chance of me keeping it. It would also be less distressing if it starts falling out (which would happen around day 18 – the end of this week – if it is going to happen). So on Thursday, 2 days after chemo, I went to my local hairdresser. As I have used the cold cap I had to tell the hairdresser and share the instructions about hair care with him (gentle or no brushing/ph neutral products/tepid or cold water and no hot blow drying). I felt particularly sorry for myself that day. Cutting my hair shorter felt very symbolic – this was the beginning of looking as if I was ill or under treatment and was one step from being bald. I felt nauseous and tired and weepy. The hairdresser was an angel. He was clearly shocked that I was on chemo and had not come across dealing with someone on chemo before, which surprised me. But he was gentle with my hair and took ages slowly trying to get the tangles out without brushing. The finished product is actually rather nice – I should have had it cut shorter before. I call it my ‘now you see it’ or ‘here today’ hair cut. If I do use the cold cap next time it may stay but I still haven’t made up my mind and am waiting to see how much hair I find on my pillow on Friday and over the weekend. We are taking Ella on a trip to London for her birthday around then, and to see Wicked – and I have had visions of handfuls of hair coming away at the slightest gust of wind.

This past weekend went to my cousins wedding near Lyon. We had held off making a decision until we knew how I would be. The airtickets had been bought way before I was even diagnosed. Some of our best friends hired a convertible which they drove us around in – we chuckled at the picture of all my hair flying off as we zoomed through the narrow rural French roads with the wind roaring past. Since my first week I have felt almost normal – which has been completely wonderful and rather strange. I feel a complete fraud. I cannot go very far without someone either mentioning my new short hair or wanting to know how I am. I look far too well for someone on chemo. Maybe that is why losing your hair is good – it stamps ‘be nice to me as I am undergoing poisonous treatment’ all over. Which is exactly why I am so conflicted about whether I can continue with the cold cap or not. I don’t want to look ill – I want to look normal - and the moment you lose your hair you are reminded everyday that things are not in fact normal.

In my search for distractions to help me after my next cycle I tried out a local reflexologist. I do honestly believe that this can work in some circumstances and had been meaning to try her out for a while. Of course I was again in the situation of having to relate my particular circumstances during my first consultation – to which I got a mixed response. I should describe her first. She runs a tiny business with a shop front. It is filled with pictures of the reflexology points on hands and feet and alternative books and healing information. She dresses in white (clearly her uniform). There is something incongruous about her appearance and her gruff smokers voice and dyed blond hair. I guess she is about 50 and I could imagine her sitting in a gypsy trailer, with a crystal ball surrounded by candles and tinkling sounds. She wanted to know that my doctor said it was OK to treatment – so I text Lynette who text back that there was no clinical reason why not. I had to restrain a laugh as she grasped my hand when I told her I had had breast cancer and was going through treatment – she looked at me in a slightly pained way and held my hand firmly in the middle and told me she was also a healer. I was made to pick a card from a stack of ‘angel cards’ – I picked one with the word ‘openness’ with some words of wisdom which boiled down to the need for me to be more open and release more. I could foresee the next 20 minutes. We went through a list of medical conditions and detailed those that applied (once upon a time I could tick NA to all of these). She wanted to know about my mental state – and how stressed I was. I had to mark my emotional state out of 10 – I gave myself an 8, I was well supported and I considered myself no more stressed than most people with a job and family. I was not giving her much to work with. She quoted some study which had indicated that 75% of illness was the result of stress and only 25% medical (not sure what that means). I am not quite at the stage that I am going to try anything. At this point my treatment is chemotherapy. I will perhaps review what I do after this is finished in terms of ‘healing’ but I am not sure reflexology is going to do it at this stage. What I am hoping for is some physical relief from the symptoms of chemo and to help keep me feeling energetic in between cycles. After this rather protracted introduction she started some treatment and I have to say she had a wonderful touch and it felt as if she really knew her stuff and I will most definitely return. She wants to use me as a case study (oh dear) and encouraged me to get a journal and write down all my emotional feelings. I will not be doing this and certainly would not share with her if I did – but was far too polite to say so. She will of course interpret this as being at the heart of the problem – if only I would open up then I would release all that pent up and negative emotional energy which would of course cure my cancer.

I am in week 3 now – with cycle two in 6 days. I am working from home – going in once a week at the moment (except the week of chemo) and living life almost normally – but being a bit more gentle on myself. My head started itching a bit today. Watch this space. My port has settled down and I barely notice it except when I accidently knock it and it feels very strange sticking out under my skin. I am still suffering from cording down my left arm which I cannot stretch out. The cords (I have two of them) run all the way down to my wrist – they hurt less than the early days – except when I try and stretch out my arm to reach for something high on a shelf or to pick something from the floor. I think I will see if a physiotherapist will help – I cannot seem to find anything about this in any of the literature I have been able to find via the web.

Kids still doing well – as I am being more or less normal (at home a bit more than usual) they have moved on for the most part and life over the last 2 weeks has felt like everyday life. Ned and Tom remain keenly interested in the state of my hair.

First Chemo – June 15th 2010

Slept OK the day before but still felt tired in the morning. Mum arrived early to take me and be with me. I spent a while the night before looking on the breast cancer care discussion forum looking at discussions between women through their chemo and read some useful ideas about how different people deal with it all. What was obvious from the site is how different the side effects can be but they do get cumulatively worse. My oncologist said that after the first cycle, by the end of the third week I will be about 90% of my normal self, and then at then end of the second cycle 90% of that and so on through to the sixth cycle.

I realised while reading the discussions that I had not organised myself a wig in case I could not stand the cold cap or if it does not work – and I can’t bare the thought of waking up one day with my hair over my pillow and not having a wig ready at the end of my bed to face the world. So before leaving for hospital I booked myself an appointment on Friday at Trendco – ‘Our professional stylists are here to help you chose a wig to suit you’ ‘All our custom made hair systems are individually designed and are virtually undectectable to both sight and touch, they are each designed and styled to the highest standards…..’.

I had not had my induction to chemo yet as I had been due to have this on Friday but the operation to insert the port and recovery after the general seemed to take all day so when I got to the hospital yesterday at 11am I was weighed; had an ECG to check my heart; had my blood pressure and temperature taken and then was talked through the drugs and the long list of possible side effects focusing on those that if I get them I should ring the emergency line (like if my temperature reaches 38 degrees).

The cold cap goes on half an hour before treatment – so my oncology nurse wet my hair and covered it in conditioner and then squeezed the frozen hat pack (think thick fancy swimming hat) on my head, adjusted the straps to unbearably uncomfortable and then placed the strap round my chin and squeezed so I could barely talk except through gritted teeth. She told me if I could get through the first 15 minutes I would be OK. It was utterly horrid, I did keep it on the whole time but it made the whole thing even more miserable than it otherwise would have – so perhaps the perfect wig is the way to go. As soon as it goes on I felt as if my eyes were dilating and my brain felt light and fuzzy. Fifteen minutes after it was on the oncology nurse set up the various tubes ready to infuse the variety of drugs I would need. This involved sticking an inch long needle (that’s how long it looked) through my newly inserted and still very bruised port. I had had some anaesthetic cream on it but that did not reach the underlying bruising – which had only come up that day and so I had a chest tinged with yellow. Inserting the needle into the port was perhaps the next worst thing, and once it was in there were various flushes and some anti nausea drugs – all of which you can feel enter your body and start trickling around.

I only cried once during the day and it was at this point – my bottom lip went and I just sobbed – not an ‘Oh wo is me why is this happening to me’ type sob but a real child like I’m all hurting and uncomfortable, I’m being prodded and pulled and its just horrible and I know I will have to do it again and again. The oncology nurse had warned my mother that she should keep an eye out for me about 20 minutes in as that was when I was likely to break down – and I did right on cue. It didn’t last long – I pulled myself together with Mum gently chanting ‘mind over matter’ as she rubbed my hand and shoulder. I was pleased she was there. Rupert had wanted to come but not being able to drive was one issue and he also has pretty full on work at the moment – but in the end I think I preferred having Mum there for the first one. You sort of regress back to some child like state – where you are no longer in control and you are feeling rather vulnerable and just have to let things happen to you – and that is when you want your mother. It also means that she could share with me what went on and I am not sure I could have or would have wanted to describe it to her in great detail – but by living it with me she has a good idea of what it all means and this will make it easier for me to call on her when I am feeling low.

Once I had had all my pre meds – the oncology nurse, who had set up a saline drip – came in with 4 huge syringes with the different drugs that make up FEC. One of them is red and is very corrosive – hence the need for the port so that the drugs will be quickly diluted and so have no time to damage any tissue. The oncology nurse manually fed these into the tube going into the port – which took nearly an hour. I then sat for another hour and a half with the cold cap on – wrapped in an electric blanket. There were hundreds of trashy magazines – but it was difficult to focus on them – especially as I could not fit my glasses on under the cold cap.

We had arrived at 11am and were nearly ready to go at 3.30 – but not before another long set of instructions and things to look out for and a huge bag of drugs.

Things to look out for or do: keep hands and feet moisturised as drugs make skin more sensitive and can cause sores and cuts if not looked after; wear soft shoes if going on long walk as skin will chafe easier; look after nails to avoid witlows – particularly important on left arm which is 6 lymph nodes down making the arm vulnerable to lymphadema (essentially where arm swells – and worst case would mean I would have to wear a tight sleeve on it for rest of life if I get this – nice); keep an eye on temperature; go to practice nurse next day at 2.30 to have neulasta injection (to keep white blood cell count up); keep zovirax handy in case of cold sores; eat small and frequently to avoid nausea; keep mouth hydrated to avoid ulcers and clean teeth regulary; drink 2-3 litres of water….and more that I cant remember.

The drugs include steroids for the next 3 days – really to help with nausea which is a big side effect of FEC. The steroids will perk me up, make me fat round the middle and give me a big appetite and so possible weight gain (bald and fat). Then on Saturday when I have finished the steroids I will feel ‘grotty’ probably. I have other anti nausea pills and some anti acid pills and some constipation pills because all the above can cause this. Fantastic.

I felt pretty wiped out when I got back – very tired eyes (which I put down to the cold cap) but I pretty much stayed in bed in anticipation of the ‘SEs’. But the night was OK, I woke once to take an anti nausea pill (best to prevent it as pills do that well but once you have it is difficult to control) and in the morning ate my tea and toast in bed lovingly prepared by my one footed husband – took my steroids and other pills and feel OK, a bit tired a bit wobbly but OK. Ventured out to take the dog for a walk and go for a coffee at my favourite coffee place (taste still with me).

My next adventure is the hair adventure. The oncology nurse said my hair needs to be shorter to increase chance of keeping it – so I have booked a hair appointment for an even shorter hair cut. I have not had a short hair cut for a very long time (if ever) so it will either be fantastic or so unbearably disgusting I will definitely go for the long glamorous wigs and bandanas. To protect my hair today I had to keep the conditioner from yesterday in and not brush it. In fact I have to avoid brushing it; blow drying it; styling it etc all the way through to keep it in place if possible (not that I have ever really brushed my hair anyway or for that matter styled it so should be quite straightforward).

I had my neulasta injection in my tummy today – and am preparing myself for a sore joint night particularly in the hips – as my bones attempt to make white blood cells (I think that is why)….and am now back lying in bed with a selection of wig and hair magazines and a good book my cousin sent me.

Finally the kids and how are they…still confused about the hair issue – will I lose it; when; why not already; Tom is the one who considers it all deeply and comes to my bedroom now and then to ask me if I am going to die and how do I know. Ella much more philosophical – she has a new camara and is charting my progress almost daily – so far so good.

Huge love x

After Surgery

After Surgery

We went to see the breast consultant on the Thursday after Surgery – he examined his handiwork, removed the sterostrips and covered it again with another plaster and gave us the results from pathology. The tumor was 1.9cm – not 1 cm which it had been estimated at the initial examination (that means nearly 2 billion bad cells rather than 1 billion) – not sure how it hid in my not very large left breast as I used to semi examine myself when showering. We knew it was oestrogen responsive – but found it was also progesterone responsive; it was not in the nodes, there was no vascular invasion and it was grade 2 all the way through. So this was not a bad set of results – it could not have been better from what we already knew about it and the surgeon and Macmillan nurse Lynette actually allowed themselves to look and sound pleased about it. Usually they are so tight lipped and you stare at them trying to read something into their inscrutable faces but on this day they clearly enjoyed telling us these results.

Rupert was overwhelmed by this meeting and it was the first time he has really cried – in relief. I did not cry in relief – I suppose I have spent that much more time thinking and reading and I know that even women with my type of results die and so even though it is good that there is no obvious evidence of spread – they cannot say that there is no cancer – they can say that it is likely that there is no cancer. I certainly feel positive about these results – it is just that these results more or less confirmed what we knew before and therefore I was where I had been already (and not in a worse place).

We spent half term away in Wales and I felt pretty much myself by the end of the week – the weather was warm and sunny. My surgery scars were and still are sore – not all the time but they are not comfortable – and the scar under the arm is the worst. He took out 6 lymph nodes. What has been most annoying though has been what I now know is called ‘cording’. Under my left arm it looks and feels as if they have sown up the cut too tightly as there are these ‘cord’ looking things under the skin which make it difficult for me to stretch my arm out, they run right down my arm beyond my elbow and are very uncomfortable. When I told Lynette she said they did not really know exactly what they were but they were quite normal. They are something to do with the lymph nodes that are no longer there – it is as if they are the remains of the drainage tubes that ran from the lymph nodes – and they have died and so gone all hard and fibrous. Her instructions were to break them. Ouch…..take pain killers and try and walk my arms down the role and break them – ‘you can sometimes even hear them ping’. She said if I was not able to do it myself then the oncologist we were booked to see on the Tuesday after half term would do so for me. Well I spent a couple of evenings after a pain killer trying uselessly to break them – so decided to wait for the oncologist. I think of all the post surgery pain these have caused me the most trouble – they are horrible.

Then – on our last day in Wales during a furious game of stuck in the mud (I was an observer) between Rupert and the kids Rupert pulled something in his foot very hard. He hobbled for the rest of the day, drove down to Brighton that night and even went to work the next day. He came home early in pain and I took him to the urgent care centre in A&E as his foot did look particularly swollen. He was there for about 3 hours and has ‘a meaty fracture’ in his foot – more specifically he has ‘done a David Beckham’ which allegedly is quite difficult to do and you have to be quite fit to exert that pressure to get this type of fracture (according to Rupert!). He was booked into the fracture clinic the next morning by a lovely male nurse who felt sorry for him when Rupert explained why this was such bad timing. He is now home with a big boot instead of a cast and hobbling around feeling very frustrated.

On Tuesday 8th I went into work in London day – I worked that week as I felt fine except for local discomfort. It was strange getting ready early as if it was a normal workday, catching my normal train as I have done so many times – but as I sat there I knew it wasn’t normal and I was pinned to my seat for a short while as I realised it would never be normal in the way it had. Everything around me, thoughts and plans are different. Conversations are no longer the same, for me at least, they are laced with some other meaning – most of the time I don’t want to delve too deep into the long term, and in the short term I cannot plan normally simply because of the uncertainty about my treatment so I have been working on a day by day and week by week plan. I have not been able to confirm anything we had pencilled in that might have happened over the next few months. Our summer holiday plans to go to Spain have been cancelled; our plans to go to my cousin Grizzles wedding in France are on hold; Tim’s 40th; Ella’s birthday plans; our grand plan to visit Sally Ann in New York for her 80th over Tom’s birthday. Work have been incredibly supportive but again I have had a short term plan to cover me over the recent 2 weeks – but without certainty about what next we have been working on a week by week plan.

Over the longer term despite the likelihood that everything will be fine I have a concrete risk that it might not – and I am trying to digest it. I would like to think that I will just get back to things as they were – but then something has contributed to my getting this so we will need to reflect. I had started writing a book (I was in the very early stages – and we are not talking booker prize stuff – but light easy reading) – about a woman reaching 40 – a light reflection on the ageing process – here is a line from chapter one (there is only one chapter at this point):

‘Anyway – the point being that at 19 I was just setting out in life. That was 20 years ago and look at where I am now. I am not so worried about where I am now but where I will be in another 20 years. I will be 59. FIFTY NINE. That means I will be entering my sixtieth decade. How did that happen? I know it has not actually happened yet – but 20 years no longer seems such a long time.’

Well, my book doesn’t seem so light anymore. On my train journey to work I sat opposite a beautiful woman who must have been in her early 60s, her face was lined and her hair well kept but thin and greying – and all I thought was ‘I hope I am that old one day’.

I honestly don’t spend my time thinking about this all – but over the last few weeks I have done a few times.

The oncologist

We met the oncologist on Tuesday 8th. He was lovely – and talked to me as if I was the first woman who had ever got breast cancer. He described the process of being diagnosed with cancer and the time afterwards a bit like being in a car which starts going off the road, danger lights flashing, windscreen wipers going. You pull over, adrenaline pumping, you fiddle with knobs and buttons and deal with the immediate emergency – and then once this is over and things have stopped flashing, adrenaline slows and you look around and realise the car is still broken down and you are in the middle of no where off the road. He must meet so many people who have gone through the same set of thoughts and feelings. He also described it as bereavement – and this is what is feels like to me. A bit like with bereavement - at first it is very acute and you think about it all the time, when you make a cup of tea, answer the phone, go shopping and then over time it gets less acute, you think about it but not all the time and eventually you learn to live with it (I am not there yet).

We went through my results and discussed the treatment options. I will definitely have radiotherapy – 4 weeks (usually it is 3 weeks but for younger women as our breasts are more dense we get an extra week). I will also definitely take tamoxifen for 5 years and possibly something else after that. And then we discussed chemotherapy. He talked through the risks of someone of my age with my results – and it went something like this (it is quite crude but is designed to help decision making using a database of American women):

Out of 100 women – with no additional therapy (except surgery) – 10 will not be alive in 10 years – 2 will die from other causes and 8 from cancer. Tamoxifen decreases this by 2 women – so 6 are not alive in 10 years from cancer – and chemotherapy decreases this by 2 also. Combined therapy (tamoxifen and chemo) therefore reduce the 8 dead to cancer to 4 by 10 years. Well – that was definitely enough for us. If it were to come back I would want for the kids sake to know that I did everything I could to prevent it coming back – and if it came back and I had not had chemo I could not bear to think that I might have done something to prevent it and I did not. I think if I were in my 60s I might think differently but every year over then next 10-15 while the kids are still kids seems that much more precious.

Chemotherapy

We did not make our decision then, but went home and talked about it and discussed it with some family and friends. I went to see Lynette the next morning to discuss the details and I am booked in for my first Chemo session (of 6) on Tuesday 15th. I will have 6 cycles of FEC 75 over a period of 18 weeks – so my last session will be the very end of September. Each day after the chemo I will have an injection to keep my white blood count up. All of these have a range of rather nasty side effects – fatigue, sore mouth and ulcers, nausea, joint ache, hair lost, pain and more. I have been given my own chemo record book which I must carry around.

I am going to try the cold cap – this is a cap that you put on your head before during and after the chemo drugs are being injected and they freeze your head below zero – the idea being that you keep your hair – at least prevent it all coming out. Many women cannot bear the cold cap so I have been told to prepare to lose it but I may not. FEC 75 is one of the types of chemo that many women do lose their hair. Apparently you lose your eyebrows, eyelashes, pubic and underarm hair but not leg hair (very strange). So even if the cold cap works I will have hair on my head but no where else.

Before we left the oncologist he had a go at breaking the cording under my arm which is causing me such annoyance and discomfort. He pressed very hard and suddenly and there was a loud crunching noise – and he broke a few of them – but more remain. You should have heard it – it was quite disgusting. Rupert was sitting on the other side of the room on the other side of the curtain and he could hear it ‘snap’ from there.

Port

In preparation for the chemo I was admitted as a day patient on Friday to have a port inserted in my chest (which involved a general anaesthetic). A port is something they place under the skin in the muscle of the chest. It has a tube running from it down a vein which runs directly into my heart. This is for the chemo drugs which can burn the veins in the arm. Going through the port straight into a major vein dilutes the drugs quicker. I have this uncomfortable lump on my right hand side – currently covered by a large plaster – which is a flat volcano shape. They will stick a needle into the skin in the hole at the top of it and feed the chemo drugs intravenously through it. I can swim with it and basically get on normally – except for at the moment when it feels really obvious – sticking out of my chest. The car seat belt runs over it which is painful – but it should calm down within a week. I have to wear a band on my wrist and carry a card showing I have a port in situ.

The operation to insert the port was straightforward but I was in the hospital all day – I thought it would take a couple of hours and had no idea it would mean a general. Luckily I opened a letter the morning of the procedure, before I had eaten anything, instructing me not to eat or drink anything.

Knowing I would be put to sleep I asked if they could have another go at breaking my damn cords at the same time. The vascular surgeon who inserted the port had clearly been asked this before as he was fine with this strange request. When he came to see me after I had come round he told me they had had a go and broken some – but that it was quite a fight (I have lots of bruising under there now - lovely). What a day.

I am now getting myself ready for Tuesday. My Mum is going to come and take me and stay with me. I have been looking at websites where women who are undergoing chemo for breast cancer talk to each other about their experiences. So far I have only read the chats of American women (who interestingly, even with the same set of results as me, all seem to have stronger chemo regimes and more cycles). They are basically discussions about a range of horrible side effects – which they all refer to as ‘SE’! They all discuss the various medications to help with the SEs – it is very medical focused. I am going to find a UK site – which I bet will be full of discussions about supplements and natural strategies to mitigate the side effects.

I have had so much advice and ideas about ways to improve nutrition/diet about supplements. I have so far been sent 3 books from different people about different diets and approaches to fight cancer which I am looking forward to reading. A mother from school – who I have known for a while (but not well) sent me a huge document she had put together with a range of strategies and the evidence on which they are based. People are so amazing. The first involves getting a water filter and the second flax oil and quark. When I have the time I need to see a nutritionist to help me work out what I need to do and how to incorporate it easily into our life. I have bought myself some flax oil and haves started this regime to help with the chemo. A few things are non negotiable – my morning latte being one of them. I have though worked out that Pret makes them with organic milk.

It is late on Sunday night. I am going into work tomorrow to discuss how to deal with the next few months.

I have had such lovely messages, flowers, books and chocolates from people – I feel bad I have not been able to be in touch more. Things have been changing daily that it is quite hard to keep people up to date – so I hope this blog works and you don’t find it too long and boring. I also hope that future messages are not just full of sad stories of uncomfortable ‘SE’. I have some fake eyelashes and eyebrow pencils in preparation. As you may know my lovely Aunt Joanna is currently undergoing Chemotherapy for secondary ovarian cancer – she has been a huge comfort and I have followed her progress closely. It is quite unbelievable that we will both be undergoing it at the same time. I was with her just last week – she had a rare trip out and we went to Boots to buy her some eyelashes and brows (so I knew which ones to choose). What a strange world.

Lou x

After Surgery

After Surgery

We went to see the breast consultant on the Thursday after Surgery – he examined his handiwork, removed the sterostrips and covered it again with another plaster and gave us the results from pathology. The tumor was 1.9cm – not 1 cm which it had been estimated at the initial examination (that means nearly 2 billion bad cells rather than 1 billion) – not sure how it hid in my not very large left breast as I used to semi examine myself when showering. We knew it was estrogen responsive – but found it was also progesterone responsive; it was not in the nodes, there was no vascular invasion and it was grade 2 all the way through. So this was not a bad set of results – it could not have been better from what we already knew about it and the surgeon and Mcmillian nurse Lynette actually allowed themselves to look and sound pleased about it. Usually they are so tight lipped and you stare at them trying to read something into their inscrutable faces but on this day they clearly enjoyed telling us these results.

Rupert was overwhelmed by this meeting and it was the first time he has really cried – in relief. I did not cry in relief – I suppose I have spent that much more time thinking and reading and I know that even women with my type of results die and so even though it is good that there is no obvious evidence of spread – they cannot say that there is no cancer – they can say that it is likely that there is no cancer. I certainly feel positive about these results – it is just that these results more or less confirmed what we knew before and therefore I was where I had been already (and not in a worse place).

We spent half term away in Wales and I felt pretty much myself by the end of the week – the weather was warm and sunny. My surgery scars were and still are sore – not all the time but they are not comfortable – and the scar under the arm is the worst. He took out 6 lymph nodes. What has been most annoying though has been what I now know is called ‘cording’. Under my left arm it looks and feels as if they have sown up the cut too tightly as there are these ‘cord’ looking things under the skin which make it difficult for me to stretch my arm out, they run right down my arm beyond my elbow and are very uncomfortable. When I told Lynette she said they did not really know exactly what they were but they were quite normal. They are something to do with the lymph nodes that are no longer there – it is as if they are the remains of the drainage tubes that ran from the lymph nodes – and they have died and so gone all hard and fibrous. Her instructions were to break them. Ouch…..take pain killers and try and walk my arms down the role and break them – ‘you can sometimes even hear them ping’. She said if I was not able to do it myself then the oncologist we were booked to see on the Tuesday after half term would do so for me. Well I spent a couple of evenings after a pain killer trying uselessly to break them – so decided to wait for the oncologist. I think of all the post surgery pain these have caused me the most trouble – they are horrible.

Then – on our last day in Wales during a furious game of stuck in the mud (I was an observer) between Rupert and the kids Rupert pulled something in his foot very hard. He hobbled for the rest of the day, drove down to Brighton that night and even went to work the next day. He came home early in pain and I took him to the urgent care centre in A&E as his foot did look particularly swollen. He was there for about 3 hours and has ‘a meaty fracture’ in his foot – more specifically he has ‘done a David Beckham’ which allegedly is quite difficult to do and you have to be quite fit to exert that pressure to get this type of fracture (according to Rupert!). He was booked into the fracture clinic the next morning by a lovely male nurse who felt sorry for him when Rupert explained why this was such bad timing. He is now home with a big boot instead of a cast and hobbling around feeling very frustrated.

On Tuesday 8th I went into work in London day – I worked that week as I felt fine except for local discomfort. It was strange getting ready early as if it was a normal workday, catching my normal train as I have done so many times – but as I sat there I knew it wasn’t normal and I was pinned to my seat for a short while as I realised it would never be normal in the way it had. Everything around me, thoughts and plans are different. Conversations are no longer the same, for me at least, they are laced with some other meaning – most of the time I don’t want to delve too deep into the long term, and in the short term I cannot plan normally simply because of the uncertainty about my treatment so I have been working on a day by day and week by week plan. I have not been able to confirm anything we had pencilled in that might have happened over the next few months. Our summer holiday plans to go to Spain have been cancelled; our plans to go to my cousin Grizzles wedding in France are on hold; Tims 40th; Ellas birthday plans; our grand plan to visit Sally Ann in New York for her 80th over Toms birthday. Work have been incredibly supportive but again I have had a short term plan to cover me over the recent 2 weeks – but without certainty about what next we have been working on a week by week plan.

Over the longer term despite the likelihood that everything will be fine I have a concrete risk that it might not – and I am trying to digest it. I would like to think that I will just get back to things as they were – but then something has contributed to my getting this so we will need to reflect. I had started writing a book (I was in the very early stages – and we are not talking booker prize stuff – but light easy reading) – about a woman reaching 40 – a light reflection on the ageing process – here is a line from chapter one (there is only one chapter at this point):

‘Anyway – the point being that at 19 I was just setting out in life. That was 20 years ago and look at where I am now. I am not so worried about where I am now but where I will be in another 20 years. I will be 59. FIFTY NINE. That means I will be entering my sixtieth decade. How did that happen? I know it has not actually happened yet – but 20 years no longer seems such a long time.’

Well, my book doesn’t seem so light anymore. On my train journey to work I sat opposite a beautiful woman who must have been in her early 60s, her face was lined and her hair well kept but thin and greying – and all I thought was ‘I hope I am that old one day’.

I honestly don’t spend my time thinking about this all – but over the last few weeks I have done a few times.

The oncologist

We met the oncologist on Tuesday 8th. He was lovely – and talked to me as if I was the first woman who had ever got breast cancer. He described the process of being diagnosed with cancer and the time afterwards a bit like being in a car which starts going off the road, danger lights flashing, windscreen wipers going. You pull over, adrenaline pumping, you fiddle with knobs and buttons and deal with the immediate emergency – and then once this is over and things have stopped flashing, adrenaline slows and you look around and realise the car is still broken down and you are in the middle of no where off the road. He must meet so many people who have gone through the same set of thoughts and feelings. He also described it as bereavement – and this is what is feels like to me. A bit like with bereavement - at first it is very acute and you think about it all the time, when you make a cup of tea, answer the phone, go shopping and then over time it gets less acute, you think about it but not all the time and eventually you learn to live with it (I am not there yet).

We went through my results and discussed the treatment options. I will definitely have radiotherapy – 4 weeks (usually it is 3 weeks but for younger women as our breasts are more dense we get an extra week). I will also definitely take tamoxifen for 5 years and possibly something else after that. And then we discussed chemotherapy. He talked through the risks of someone of my age with my results – and it went something like this (it is quite crude but is designed to help decision making using a database of American women):

Out of 100 women – with no additional therapy (except surgery) – 10 will not be alive in 10 years – 2 will die from other causes and 8 from cancer. Tamoxifen decreases this by 2 women – so 6 are not alive in 10 years from cancer – and chemotherapy decreases this by 2 also. Combined therapy (tamoxifen and chemo) therefore reduce the 8 dead to cancer to 4 by 10 years. Well – that was definitely enough for us. If it were to come back I would want for the kids sake to know that I did everything I could to prevent it coming back – and if it came back and I had not had chemo I could not bear to think that I might have done something to prevent it and I did not. I think if I were in my 60s I might think differently but every year over then next 10-15 while the kids are still kids seems that much more precious.

Chemotherapy

We did not make our decision then, but went home and talked about it and discussed it with some family and friends. I went to see Lynette the next morning to discuss the details and I am booked in for my first Chemo session (of 6) on Tuesday 15th. I will have 6 cycles of FEC 75 over a period of 18 weeks – so my last session will be the very end of September. Each day after the chemo I will have an injection to keep my white blood count up. All of these have a range of rather nasty side effects – fatigue, sore mouth and ulcers, nausea, joint ache, hair lost, pain and more. I have been given my own chemo record book which I must carry around.

I am going to try the cold cap – this is a cap that you put on your head before during and after the chemo drugs are being injected and they freeze your head below zero – the idea being that you keep your hair – at least prevent it all coming out. Many women cannot bear the cold cap so I have been told to prepare to lose it but I may not. FEC 75 is one of the types of chemo that many women do lose their hair. Apparently you lose your eyebrows, eyelashes, pubic and underarm hair but not leg hair (very strange). So even if the cold cap works I will have hair on my head but no where else (at least almost no where).

Before we left the oncologist he had a go at breaking the cording under my arm which is causing me such annoyance and discomfort. He pressed very hard and suddenly and there was a loud crunching noise – and he broke a few of them – but more remain. You should have heard it – it was quite disgusting. Rupert was sitting on the other side of the room on the other side of the curtain and he could hear it from there.

Port

In preparation for the chemo I was admitted as a day patient on Friday to have a port inserted in my chest (which involved a general anaesthetic). A port is something they place under the skin in the muscle of the chest. It has a tube running from it down a vein which runs directly into my heart. This is for the chemo drugs which can burn the veins in the arm. Going through the port straight into a major vein dilutes the drugs quicker. I have this uncomfortable lump on my right handside – currently covered by a large plaster – which is a flat volcano shape. They will stick a needle into the skin in the hole at the top of it and feed the chemo drugs intravenously through it. I can swim with it and basically get on normally – except for at the moment when it feels really obvious – sticking out of my chest. The car seat belt runs over it which is painful – but it should calm down within a week. I have to wear a band on my wrist and carry a card showing I have a port in situ.

The operation to insert the port was straightforward but I was in the hospital all day – I thought it would take a couple of hours and had no idea it would mean a general. Luckily I opened a letter the morning of the procedure, before I had eaten anything, instructing me not to eat or drink anything.

Knowing I would be put to sleep I asked if they could have another go at breaking my damn cords at the same time. The vascular surgeon who inserted the port had clearly been asked this before as he was fine with this strange request. When he came to see me after I had come round he told me they had had a go and broken some – but that it was quite a fight (I have lots of bruising under there now - lovely). What a day.

I am now getting myself ready for Tuesday. My Mum is going to come and take me and stay with me. I have been looking at websites where women who are undergoing chemo for breast cancer talk to each other about their experiences. So far I have only read the chats of American women (who interestingly, even with the same set of results as me, all seem to have stronger chemo regimes and more cycles). They are basically discussions about a range of horrible side effects – which they all refer to as ‘SE’! They all discuss the various medications to help with the SEs – it is very medical focused. I am going to find a UK site – which I bet will be full of discussions about supplements and natural strategies to mitigate the side effects.

I have had so much advice and ideas about ways to improve nutrition/diet about supplements. I have so far been sent 3 books from different people about different diets and approaches to fight cancer which I am looking forward to reading. A mother from school – who I have known for a while (but not well) sent me a huge document she had put together with a range of strategies and the evidence on which they are based. People are so amazing. The first involves getting a water filter and the second flax oil and quark. When I have the time I need to see a nutritionist to help me work out what I need to do and how to incorporate it easily into our life. I have bought myself some flax oil and haves started this regime to help with the chemo. A few things are non negotiable – my morning latte being one of them. I have though worked out that Pret makes them with organic milk.

It is late on Sunday night. I am going into work tomorrow to discuss how to deal with the next few months.

I have had such lovely messages, flowers, books and chocolates from people – I feel bad I have not been able to be in touch more. Things have been changing daily that it is quite hard to keep people up to date – so I hope this blog works and you don’t find it too long and boring. I also hope that future messages are not just full of sad stories of uncomfortable ‘SE’. I have some fake eyelashes and eyebrown pencils in preparation. As you may know my lovely Aunt Joanna is currently undergoing Chemotherapy for secondary ovarian cancer – she has been a huge comfort and I have followed her progress closely. It is quite unbelieveable that we will both be undergoing it at the same time. I was with her just last week – she had a rare trip out and we went to Boots to buy her some eyelashes and brows (so I knew which ones to choose). What a strange world.

Lou x

Telling the Children

Telling the Children

We told the older two first. We had waited until they were over their jet lag and had settled back at school. I had also wanted them to have seen me functioning pretty normally for a few days to set the scene, so they could reflect and see that it couldn’t be that bad if Mum and Dad were being so together about it. We had had supper and the little two were in bed – so Ella and Tom were with us in the kitchen. I said I was going to tell them something but they had to listen to me all the way through before they reacted – but we didn’t get past the words breast CANCER – and both burst into tears. Tom started wailing ‘Mummy I don’t want you to die, I don’t want you to die’. I carried on talking – telling them more of the detail and reassuring them that actually I was quite lucky as it was early and quite small and that it was hormone responsive which meant I would have these special pills which they know work really well to make sure it did not come back. We said that I needed to have an operation but that would be good as they would be taking the cancer out. We drew a line which represented bad stuff and one end was very bad and the other not so bad and I said how lucky we were that mine was at the not so bad end and that there are such good treatments these days and so many people who have had this and are doing really well now. I also told them to consider how I was – and would I really be sitting there talking to them calmly and to remember the past week – had I looked like someone who thought I was going to die? Ella could remember the mother of a friend of hers from Stanford (who is alive and well) and others and she rapidly calmed down and look in a funny way relieved. Tom was still sobbing and wanted to know if I would survive for long enough to have the operation. Their concept of time (and their fear of cancer) is so immediate.

Ella has since organised some charity run for macmillan and ordered a fundraising pack from breast cancer care. Tom went to find out more from the internet – something that I had not anticipated – they have access to so much information. He looked up the drug I was on (tamoxifen) and that was good – but he also read something about younger women having poorer outcomes. Hmmm.
We told the little two in two parts. The first was around the supper table one Sunday – to tell them Mummy would need to have an operation because she had found something bad in her booby and the doctors needed to take it out. Our amazing Macmillan nurse Lynette had told us that being specific was important so they could differentiate between an illness they might have and what was wrong with mummy. Ned’s reaction was ‘ooooh your boobie – yuck’. William then said ‘Ned if you had something that could kill you (note we had not used these words at all) on your willy would you not let them take it off because it was your willy’. There followed a conversation about the time there had been a sore willy episode (with 3 boys not infrequent) and the doctor had had to see it. And the conversation moved on. A few days later when they were in the bath I read them a book specially written for this purpose – called ‘Mummy’s lump’. It goes through each stage, deals with issues like Daddy may be sad sometimes and granny and grandpa might come and help sometimes etc and hair loss with chemo through to the final page when it is all over and the family are on the beach together on holiday. This was the first time William really worked out that it was something more than just a lump in the boob and asked if it killed people, I said sometimes, but that now they knew how to fight it and my one was one they knew lots about my type and there were really good doctors and medicines. He went very quiet and his eyes went pink and welled up. Ned was more upset about the possibility of me losing my hair – he said he did not mind about them taking out the lump but he did not want my hair to come out. That picture really got him. So lets hope that does not happen! If I do have chemo there is this cap they can put on your head which freezes your head to minus 5 and this can help stop the hair falling out – but we have been told some women find it so unbearable that we should not count on it.


The days before surgery

Rupert raced around like a mad thing preparing a sanctuary for me in our bedroom. He cleared all the sides so rather than cluttered and homely it actually looked minimalist and modern. His piece de resistance was the flat screen television – that he not only bought for me (the idea being to put it in the playroom when treatment is all over) but he successfully attached it to the wall in front of our bed which was a hugely complicated affair. The preparations for this had involved finding a man to put up an aerial with a connection in the room. When late on the night before the night of the operation – the TV was up but the connection did not seem to work – the mood in the house was indeed somber. But a new day, a cup of coffee and some random button pressing and it magically sorted itself just before we called the aerial man back to claim we had been done and that the connection simply didn’t work.

The day before surgery was strange. I had not been happy with the offending breast / nipple which once I had noticed the lump I also noticed that it was slightly sunken. Since I had found it and been diagnosed I had simply not wanted to look at it – but I did the day before surgery. It had served me quite well – feeding my babies among other things – and I thought I had better say my goodbyes. As the lump was right under the nipple I knew I was going to lose it. Until recently and in many places women with a tumour in the centre of the breast or under the nipple have a masectomy – but this surgeon was planning to keep as much tissue as he could – which meant he was proposing something he called a grizoty (not sure if spelt properly). This meant taking off the nipple and tumour (think apple corer) and reconstructing (ie filling the gap) using breast tissue from around the breast.

So I had a quick look, had a bath and went to bed with my bag packed.

Surgery

We had to be at the hospital at 7.15am so were up early – I could not eat or drink – and off we went. At the hospital we filled in some forms, spoke to the nurse and the anaesthetist came to visit and gave me anti nausea pills as I had once reacted badly to a general (rather I had been sick after it – funnily enough over 35 years ago when I had a cyst removed from the same breast). The surgeon came in with his black marker – think clearly technically competent but bedside manner zero. He was focusing on the logistics of the operation and speaking aloud – one of the technical challenges was the lack of tissue under my breast (‘as you do have small breasts’). He drew all over me and said the operation would be slightly more complicated because of the reconstruction they would have to do at the same time. I put on one of those gowns that do up at the back and got into bed.

In the instructions I had been given before the operation one of them had been to ‘remove nail varnish at home’. I had read this to mean if you are going to remove nail varnish remove it at home and not in the hospital. What it actually meant was you must remove your nail varnish – something about the anaesthetist needing to see the colour of your nails. So second before being wheeled in I was there removing nail varnish from my nails.

I was first on the list which was good. They wheeled me in – Rupert came as far as he could. I have not blubbed much during all of this – the first week but not since – but I did feeling like blubbing then – and worried that would get all snotty if I did and how would they be able to put be to sleep if I was snotty. But I was given the pre med quickly which distracted me – a nice floaty feeling – and within a very short time I was out.

I went in at about 8.40 and came round at about 11.15. My breast (what was left of it) felt sore and stingy so I started on my morphine pump early. I spent the morning with Rupert, who was there when I came round. I felt OK. He left me to sleep as I was falling in and out of sleep – and picked up the kids and brought them to see me after school. They met Lynette and spent a little time in my room but then went home and I just slept. I had the morphine up all night so was woken every hour to have my blood pressure taken. I stayed in the next day until the afternoon – feeling rather headachy – having been pumped with all sorts of chemicals. Anasthetic, radioactive blue dye for the sentinel node procedure; blood thining injection; 2 lots of intravenous antibiotics; morphine and anti nausea. I am sure these are what knock you out so much. Rupert came and took me home and set me up in my lovely room – which is now just full of flowers and organic chocolate and other goodies. We have been so overwhelmed by the amazing response of our family and friends. I have received letters and card and I have had lovely long phone conversations with friends I don’t talk to enough as we are all so busy. It has been quite amazing and I just feel so totally spoilt. Rupert has been absolutely amazing organising everything. My Mum has been down, so has my sister.

I am feeling more myself now – 6 days on but have a sore left arm and the wounds are still not comfortable. I took the plasters off yesterday – not very pretty – but only temporary. I will have wonders done to it when it is all over. I have had some very slow days but am more mobile every day.

What next…..

Our next big appointment is Thursday when we will see the surgeon who will be able to tell us the path results – what I hope for is that there was nothing in the lymphs, that the grade of the tumour was no more than the 2 that they found at the biopsy, that it does not look raggedy round the edges and that they got good clear margins so don’t need to do any more surgery. If any of these are not as good as this then this will influence my treatment next. I will see the oncologist next – not sure when but soon after the surgeon…..
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May 10th -2010

Since my breast cancer diagnosis – not that I did not realise – but I have been reminded how many lovely wonderful people I have in my life. So on the advice of one of my best friends I will write this blog – that way I can make sure you can be – if indeed you want to be – kept up to date with the Howes family journey over the next few weeks and months.

We told Ella and Tom last week on Thursday evening. As they had been stuck in Singapore with my mother at my sister Cecilias following the volcanic ash airspace shut down – I wanted them to be over their jet lag and settled back at school before we told them. Until then I have been telling people by phone and email but in a somewhat controlled way so we could make sure that the kids did not hear anything from any where other than us. We also needed to work out how we would react to the news every day – and to do this I needed to live with the knowledge and work out how I was coping with it before I could honestly share the news with the older 2.

I am on tamoxifen to shrink it for 2 weeks, then will have one week break from it before surgery next week on 19th.