A holiday for Mum

A week before Mum died, Dad and I were sat on her bed trying to get our heads around what was happening. Mum was about to go into hospital to have her abdomen drained of the liquid that had built up. This is called ascites and a sure sign that the liver is struggling (although it is only on reflection that I will admit this). Suddenly, everything was feeling a bit out of our control.

I was sat by Mum’s feet at the end of the bed while dad lay next to her. I felt sick. I had butterflies in my tummy that were making me all jittery in anticipation for the conversation that was coming. I wanted to leave the room so I could cry without them seeing. But I also wanted to stay, so I could reassure Mum it would all be ok. What I didn’t want was to be 20 anymore, I wanted to be 6. I wanted to be at an age where you still believe in Father Christmas, and the tooth fairy and the invincibility of your parents. I wanted to give up all responsibility and maturity and lie in my bed watching something until the adults had made everything better again.  

On the bed, Mum said if she died, we were to go on a big holiday altogether. She made us promise. I wanted to tell her off for being so silly to suggest that was going to happen. I kept a jokey tone and told her we’ll have the best and biggest holiday and it won’t be such a bad thing that she has died at all because we’ll all be having so much fun. All the while I was pinching the top of my thigh tightly between two nails to stop myself from bursting into tears. Mum smiled as I said this, but I could see her trying not to cry as well.

I eventually left the room to cry upstairs. The conversation was too much to take in. We had never properly said the words ‘if’ and ‘die’ together out loud, with sincerity and so seriously. They had an been unspoken possibility that I had made a good attempt at ignoring. While I was old enough to know parents are not super human, I don’t think I had fully accepted that they can die before they’re meant to. I had this misguided belief that if I didn’t think it, believe it or speak about it, it wouldn’t happen. However, despite all my desperate hoping and wishing, 10 days after this conversation on the end of mum and dad’s bed, the worst did actually happen. Over two years later, the promise I had jokily agreed to came true.

There were many conversations on where we should go. Tom suggested a safari trip because Mum loved big adventures and travelled to Africa a lot for her work. I thought that while an adventure that big sounded fun, I liked the idea of lying on the beach reading, relaxing, eating delicious Asian food and not having to move around so much (I’m not lazy I just wanted calm). Not only that I wanted time for just us 5, and to do a safari privately for three weeks would have cost a LOT of money. After months of conversations and careful planning from Dad, it was decided we would be going on a three-week trip to Singapore, Sri Lanka and the Maldives. We were going to pick Ned up from Singapore, then fly to Sri Lanka and have an adventure travelling around in a minivan for a week, and then have 10 days enjoying the luxuries of an island in the Maldives. We would be going to the same place Mum and Dad had been three months before she died. It sounded like the perfect mixture of adventure, relaxation and comfort. 

We had been on holiday altogether since Mum had died but always to a place where we had spent many summers before as a family of six. This would be the first time we would be doing something completely different as our new unit of five. It felt both exciting but daunting. Never before had we gone somewhere so new without Mum there to negotiate packing, planning and travel. She was queen organiser. Give her an overpacked suitcase and she would quickly know how to fold, roll, squeeze and discard until it all fit into place and zipped up easily (‘use the insides of shoes’ was one of her favourite tips). She always carried around a bum bag that was packed so tightly it ended up looking like a small handbag that she had tied around her waist. Inside there would be a supply of anything we might need. Snacks, antibacterial wipes, water (one of those mini bottles), hand sanitiser, tissues, cards (always Uno), passports, boarding passes and then more snacks (when Ned was younger, he was always hungry). Every time she pulled something out, little bits of tissue paper would come out too, covering everything with white crumbs (Mum wasn’t as good at the unpacking of her bumbag as she was with packing it). Needless to say, going on a trip without Mum there directing felt like new territory and was another sore reminder of how much our roles had changed. Dad now took on masterful planning of the trip, I made sure we had a bag of games that I carried around with us everywhere (we have moved on from Uno to Monopoly deal, Rummikub and Boggle) and Ned took charge of making sure he had enough snacks. It felt important to be learning how to be a family of five without Mum there with us.   

For my whole life I had said I was from a family of six. It was a huge part of my identity. I am one of four and have always had mum and dad together as a team. When Mum died the fact that we were suddenly a family of five, with Dad now a sole parent, was the most painful acknowledgement of loss. Home didn’t feel like home without Mum there. As much as I could push aside sadness and hold back tears, I couldn’t shift the uncomfortable feeling of being in a rehearsal for our real life, waiting for things to revert back to how they were before. The empty place at the end of our kitchen table was a particularly sore reminder so I started to sit there, so it didn’t look so empty. Car journeys also felt really different because we no longer needed the back seats up in our seven-seater car. This meant we no longer had the traditional who’s-sitting-in-the-back argument and it all felt too easy sitting in a seat without having fought, pushed and shoved for it. Everything at home was tinged with Mum’s missing presence and unless I spent all my time in my room, it was hard to avoid.  

Over time this feeling of home being a foreign place has lessened. However, I still find myself much more emotional when all five of us are at home together. Being emotional means being more irritable and this does not bode well with having less space and quiet because of everyone around. Naturally this can result in more arguments. These often originate from normal day to day family chores (who’s walking the dogs) but are underscored and tainted with grief and emotion so suddenly (if I’m in an emotional and tired mood) a simple who’s walking the dogs discussion becomes why are you crying over walking the dogs which becomes why are you now sobbing over walking the dogs (remember this is simplified - I do cry easily but not to that extent!)  These discussions unwittingly morph into more acceptable outlets for emotion. It’s much less hopeless to think you’re crying over a disagreement at home than to acknowledge the fact that what you’re really crying about can’t be remedied. So, aside from the obvious excitement about going on holiday, I was also a bit apprehensive about spending so much time intensively together. While our trip would be a proper opportunity to get used to our new family identity and our different manifestations of grief, I was interested in how it would feel going somewhere completely new without Mum there with us.

Apart from this slight apprehension, I was really looking forward to going to a place Mum had been before. After someone dies there are of course no opportunities to make new memories or have any more conversations. All that I have are 20 years with Mum and 46 years of her life to learn about. Any insight into something she experienced is the closest I can get to talking to her about it.

There are occasionally moments when I remember a snippet of a conversation Mum and I had, or I realise there was more to a memory than I first thought. They come unexpectedly, sometimes triggered by a smell or a picture or a dream. I stash it away and hope for another little insight to come soon. It’s hard to describe how such small things take on a huge importance. How exciting it is to find something as simple as a shopping list, scrawled in Mum’s handwriting in the back of a notebook. I read it with complete concentration, and wonder what the list was for and when it was written. I hope for more moments like it and am so comforted when something comes back to me; a reminder that while I won’t make any new memories, there will always be the ones I have to uncover. Going to an island Mum had been before, treading the same ground as her and enjoying the same things she did meant I could more clearly imagine Mum being there. I could never ask her again about that holiday, but I could find out a bit more about it myself and from the memories triggered in Dad.





Instead of describing our amazing holiday in detail I’ve included a few photos of it instead. Suffice to say, it was all perfect (aside from the big fact Mum was missing). Even the (very) few disagreements we had were good because they stayed small and felt grief-free. We got the best of each other and had three precious weeks to make memories as a five that were happy, normal and carefree. We spoke about Mum all time, and always raised our glasses to her in the evening. We would comment on things she would have liked, and things she would have hated. Whenever we ate at a buffet, we would go around the table deciding what Mum would have chosen. We always agreed on a huge salad (she loved salad) and whatever seafood there was. I packed some of Mum’s summer dresses, and every time I had a croissant and morning coffee wearing one of them, I could imagine her doing exactly the same. It felt like the first time I could simultaneously miss Mum fully but not be crippled by it.

I think Mum asking us to have a big holiday altogether was another way of asking us to keep having fun and making happy memories as a family like we would have done before. Her biggest fear was about how we would cope without her there. Whenever we were playing games, bickering over bedrooms and sneaking bread rolls into our bags from the buffet as Mum often got us to do (perfect Ned snacks) I knew she would be happy. It’s not often I can definitely say how Mum would have felt about something now she’s not here, but for the whole three weeks I could imagine exactly how she would feel to see that we were all doing ok without her. I think it would be a mixture of relief (lots of relief), contentment, comfort, but of course sadness that she was missing out on all these memories. However, even though she wasn’t a physical part of each experience, she was the reason the holiday happened in the first place, so every memory happened because of her. I think she’d be very pleased about that.  

Googling Grief

I had never spoken to anyone about grief and what it might be like if mum died, mostly because I would never acknowledge this possibility enough for a conversation.  It was a word I knew was related to death, but I thought that it just equated to missing someone, and crying that they have died.

What I certainly didn’t expect to feel when mum died, was relief. That was one of the few emotions I could accurately label. This pressure that had built and built and built was finally relieved. The worst had happened. I didn’t have to worry about anyone immediately, and after two years of worrying about mum, it was a foreign, but welcome feeling. Alongside relief, I suddenly felt this pressure to grieve. I also felt a pressure to be ‘good’ at grieving. I managed to do well in exams and lots of other things in life, so surely the same should apply to this. I definitely wasn’t reacting as you might expect you would after your mum had died. A lot of family and friends that visited looked visibly a lot more upset than me. Where was my uncontrollable wailing that you saw in films? I was even tempted to google ‘how to grieve properly’ as if, like a lot of things in life, I could prepare for it and know what to do.

At Mum's funeral... Being a bit numb to it all was very much needed to get through the day (also who would have thought you could still smile for a photo on a day like that)

At Mum's funeral... Being a bit numb to it all was very much needed to get through the day (also who would have thought you could still smile for a photo on a day like that)

For a while after mum died, I carried this fear that I was maybe coping too well and in years to come I’d break down with the weight of everything I had repressed. I felt a bit stuck because I didn’t know how to get the grieving process going properly… shouldn’t I be crying or missing mum already? I now recognise that I was in a state of shock (but I’d never have accepted it was that at the time). I couldn’t have begun to start processing everything straight away because it would have been too much to handle. In order to confront the constant stream of family and friends and condolences, I needed to be able to shut off the depth of emotion that bubbled beneath the surface. The shock helped maintain a sense of normality for a little while after and in many ways it was protective.

When mum first died, I’d have a sad moment, but could quickly pull myself together and power on. My emotion was more intense and immediate. It translated to having a huge, gut-wrenching cry. It would be crippling and leave me on the floor, clutching at the sheets of my bed or the cushions of the sofa. I would be so choked that no sound would escape…like my cry was going inward. It was such an all consuming feeling, but almost gratifying… a physical manifestation of the horrible sadness I felt in that moment and an alignment of both body and mind. These cries were one of the few times I could actually feel the reality of what had happened. Afterwards, I’d be exhausted. If I caught myself in the mirror, I’d stare at my puffy, red eyes and try to relate this image with the one of me an hour ago, buying some eggs from Co-op or smiling at the ticket man on the train. I’d marvel at how I was able to be so normal yet feel this intensity of emotion I’d never known before. But it felt good. It felt like I was grieving properly.  

I’m noticing now that rather than translating to a massive sob, missing mum can give me a sad week or two. The emotion isn’t as immediate and all-consuming. It trickles in and just sits there until I decide to notice it. In these moments I feel low and disheartened and unmotivated. I think irrational thoughts and make up ridiculous stories. I mull over whether I’m making excuses for things because mum died, and whether or not I’m where I’m meant to be at 22. I can’t decide if some of the feelings I’m having are normal for someone in their early twenties or whether they are all because mum died. In all honesty, I feel a bit crazy.

Perhaps my capacity to sit with the sad feeling is greater than it was at the start, when it would have been completely overwhelming. I can carry it and mull it over, while at the same time functioning as ‘normal’. Although, in these moments, I feel a bit of a fraud when I smile and laugh, but feel so low underneath. I lose my sense of self a little. This just complicates things further as I overthink what I’m feeling; becoming sadder because I’m sad (and this is something I want to work on).

I notice that if I have had a string of emotional days, I’m more reluctant to feel sad once I feel better.  Almost like I’ve ‘done’ my grieving recently, and I refuse to get to that place again. I can feel myself actively pushing away anything that might make me cry. It’s probably not good to see a cry, or low week, as ‘currency’ for some good days, but maybe it’s protective so I don’t wallow for too long. I also think I get tired of being sad. It’s quite exhausting sometimes and the worst thing is that I know it’s something I’ll have to be sad about for the rest of my life. I can’t ever make it not sad, so either I stay that way or try and pull myself together and give myself permission to enjoy the day (easier said than done).  

Doing a favourite family walk on what would have been Mum’s 47th birthday, in december 2017

Doing a favourite family walk on what would have been Mum’s 47th birthday, in december 2017

I do occasionally miss the powerful cries I used to have. There’s a nice sense of contentedness after a good cry and it feels like a more obvious expression of grief. When I had these intense cries, I felt like I was doing exactly what I should be doing after mum died. I’m having to accept that having low moments and a low week or two is just another expression of grief and that’s ok. While I feel a bit ridiculous for the irrational thoughts I think in these moments (and once it passes, I can’t quite understand how I managed to feel so low), I’m grateful for feeling better afterwards. I have to remind myself that of course if my mum has died, I’m going to feel sad. While sometimes, the reason for being low isn’t as obviously attributed to mum dying, without mum they’re harder. All my emotions get in a tangle and it makes it less clear what is what. They’re not like a refreshing huge cry which is so uncomplicatedly for mum; they’re duller and sometimes it is not as easy to see where mum fits in.  However, it all comes back to her not being here. It can be such a sorry cycle sometimes of being sad because mum isn’t here and then needing mum because I feel sad.

It was hard to find pictures that relate to this blog …so here’s a picture of a little wave (tiny really) on a holiday in Greece

It was hard to find pictures that relate to this blog …so here’s a picture of a little wave (tiny really) on a holiday in Greece

I’m learning that there is no good or bad way to grieve, and what might be considered not doing well (for example, having a low day, and feeling like you want to just lie in bed and watch something) can be really needed. I can’t accurately judge whether I’m ‘grieving well’ (if that is even a thing?), although one thing I have noticed is that I’m more open to crying (in a less intense and all-consuming way). I can tap into the sadness more readily now and I sometimes just burst into tears (which is a new thing for me). After mum died, I read a few things about how grief ‘comes in waves’ and can hit you without you even realising. I almost scorned at that lack of control. I thought it was so clichéd to just cry uncontrollably at inopportune times; it was the thing of films. While I did have uncontrollable cries, they were very much a bedroom affair. Only now do I realise how wrong I was, and I understand more and more what a wave of grief feels like.

While these sudden cries have left me crying at work, sobbing at the doctors (I just went in to ask about feeling a bit dizzy) and very tearful mid-filling (not because of the horribly huge injection, but because the dentist kept calling me sweetheart which really reminded me of mum), it feels quite good to not be holding it in all the time. It feels good to be vulnerable (although not always!). 

Two years on

I dreamt of mum nearly every night for months after she died. In the dreams she would be in her final days and we would all be very aware of it; much more than we actually were in real life.  I’d be distraught and overcome with the knowledge that time was running out and I only had ‘x’ amount of days left of mum being alive. I felt this huge pressure to do something with that time and would often wake in the morning with a really sad and heavy feeling that would take a moment to place.

naked swim spot (in greece!)

naked swim spot (in greece!)

In one of the more unsettling dreams, mum was giving me some final words of advice. I was away on holiday at the time, and this moment in the dream was fittingly happening while we were sat on sun loungers by a very deep pool.  The only words of ‘wisdom’ I can remember from our final dream chat were ‘don’t speak too fast’ which, while not as sentimental as I would have liked, was funny because, like mum, I can speak very fast sometimes and it was weirdly comforting to get some realistic advice from her again (albeit in dream form). However, after this dream, I was so struck by how lifelike mum had been and how real the conversation was that all I could do was go on a run and then have a huge cry at the end of it (an example of the limited number of things to ‘do’ when you really miss someone that’s not here anymore). I did actually spice up my established run/cry routine by going for a naked swim in a secluded part of the beach on my way back. When I mentioned this to my brother Tom, he said it sounded like a moment in a film where my nakedness would have represented my emotional vulnerability at that point.... In reality though, I didn’t spend long in the water because it was a bit cold and I was quite conscious that the further I swam out, the further away I was from my clothes. Maybe there was something deeper going on in my subconscious, but so far that has been the only time I have solo skinny dipped and sobbed (!)  

It’s been interesting reflecting on the two years that have passed since mum died and how my understanding of what it means to grieve has changed. For starters, I don’t dream of mum nearly half as much as I used to, and if I do they have moved away from being set in her final days (which is a relief). I think this has something to do with being more aware of this new reality, which to begin with took a lot of getting used to. A big part of grief for me at the start was trying to wrap my head around the significance of what had just happened. I still can’t really get my head around how I haven’t seen mum in over two years and I’m still frightened by how life moves on without her, but I no longer wake from dreams of mum in the morning having to actively remember that she’s not here anymore.

can’t think of any dream-related pics so heres a pic of mum looking dreamy

can’t think of any dream-related pics so heres a pic of mum looking dreamy

To begin with, if someone asked how I was, I wouldn’t hold back in telling them that mum had just died. I’d meet people on a dog walk who had perhaps met mum a handful of times, and after asking after her I’d just offer up lots of details about how she died. I’d meet friends and feel like I wanted to tell them absolutely everything about those final days, no detail spared. I met a tutor for a catch up session, who previously didn’t know my name, but now knew the circumstances of mum’s death and its intimate details (I think he was as shocked as I was for this level of openness). I remember going back to London the week after mum had died and on the escalators from the tube out to London Euston saying the words ‘my mum died last week’ over and over again in my head. I couldn’t stop thinking about this huge new fact about myself. I would pass people in the street and think that they have absolutely no idea of this terrible thing that has just happened in my life. I really couldn’t connect what I was saying to how I felt and I’m sure saying the details out loud was a way to try and make it real (although it was sometimes quite exhausting). Maybe the dreams were also a way to try and ease me in to this new reality and bridge the gap between a life when mum was alive and a life without her. I’d have my days without mum alive, but then I could be with her at night, in my dreams.

lots of days spent going on family walks… (i think this walk was 2 days after mum died)

lots of days spent going on family walks… (i think this walk was 2 days after mum died)

Of course every time I mentioned mum dying, it would be met with huge sympathy, but I couldn’t match all the sympathetic looks and condolences with how I felt in that moment. There were times when I felt like I was cheating because surely I should feel worse than I do. I’d think am I even upset enough by what has happened? I recognised that it should be sad, and that it was sad, but I didn’t feel it properly just yet. Only now do I realise it’s such a long process (with many sad days to come) and in some ways the start for me was the easiest bit because I just (naively) decided I’d be fine. I didn’t give myself any space to not be ok. I actually didn’t know how to not be ok, and I actively didn’t want to feel this foreign feeling of profound sadness. I had no experience of loss and so no reference point on whether I was doing the right thing (as if there even is a right thing to do). I just stepped into immediate coping mode. The depth of what had happened was too overwhelming to comprehend so it was just shut out and given out in manageable doses, which to start with were few and far between. Also, I didn’t really miss mum too much because I had only seen her the other day. She could just be on a work trip for a few weeks…

Now, saying my mum died two years ago as opposed to last week, or a few months ago, has added a new dimension to grief and how I talk about it. I hold back a lot more in telling someone my mum has died. I used to feel (and still do occasionally now) that when I meet someone, however honest I am about other things, I’m a bit of a fraud until they know this huge thing about me. I’d have always described myself as being an open and honest person, however this was the first time I had been confronted with having to be selective with what I told someone. It was first time I had made up white lies or vague generalisations (‘family things’) to skirt around having to say ‘oh because my mum died’ and risk bringing the conversation to a much more serious note.

skiing two months after mum died ….all a bit weird without her (but of course still a happy moment together)

skiing two months after mum died ….all a bit weird without her (but of course still a happy moment together)

I really appreciate that hearing that someone’s mum has died recently is not something that is easy to respond to, and at the start especially I’d feel quite bad putting someone in a position to hear it.  It was never because I wasn’t comfortable saying it, it was just I wasn’t really comfortable with the bit after saying it when I had to react to the other person’s reaction. Now two years have passed, saying ‘my mum died’ doesn’t have the shock factor it once had, but when it was really recent people would look at me with a ‘how are you ok’ expression on their face and huge sympathy. Of course sympathy is lovely, but it just meant I’d repeat my well rehearsed post-mum dying script and conversations would just morph into the same thing (often with me trying to offset the seriousness in their faces with a positive ‘but I’m ok’ and ‘we’re staying strong as a family’ etc). I’d sometimes want to just tell a story and the ‘mum dying’ bit not be the main part, but of course it always was for whoever was listening. I need to add though that I don’t think this can ever be avoided and it is part of what happens in the initial months (and if there hadn’t been a sympathetic reaction that would have its own issues!).  A lot of it was down to me figuring out that I don’t need to add any extra detail if I don’t want to, or feel as responsible for the other person’s feelings on hearing it. I can simply just say ‘well my mum died 2 years ago and so…’ rather than feel I need to give more of an explanation about it. The fact that mum has died is a bit of general knowledge about me, like the number of siblings I have, but it is also a very dynamic piece of information, and the potential source of hugely intimate chats. I’m still getting used to that balance.  

Last Christmas

In the weeks leading up to mum’s last Christmas two years ago, it was clear that something had changed. She was holding her stomach more, where her swollen liver pushed into it, acting as a constant reminder that something was wrong. She was having more naps. She seemed a bit more distracted. I also felt less in sync with her which, on reflection, was an attempt to try and distance myself from how she was doing because deep down I knew it wasn’t good. My compartmentalising skills by this point were well practiced from two years of having to learn not to let the worry about mum seep into my everyday, and so my solution to it all was to completely shut off any bad looking-in-to-the-future thoughts.  In my head, if I just kept going with making juices, trying to make sure mum was eating well and keeping some semblance of normality at home, everything would be fine.

On our way to Wales… this also ENDED UP BEING The last picture TAKEN OF US AS A 6

On our way to Wales… this also ENDED UP BEING The last picture TAKEN OF US AS A 6

But by this point I felt exhausted. There are always a lot of exams in the lead up to Christmas. This, combined with going back and forth to Brighton and pushing away the increasingly obvious fact that mum wasn’t doing as well as she had been, made everything much worse. An uncomfortable thought was also flitting in and out my mind, however hard I tried to dismiss it. What if it was mum’s last Christmas? What were we doing to make it a special one? I had always refused to entertain the idea that mum could die anytime soon, and in doing so almost protected myself from the truth. But these thoughts simmered beneath the surface as much as I tried to pass them off as ridiculous. It also turned into a bit of a catch-22. If I tried to make Christmas more special would that be accepting the possibility that it was mum’s last Christmas but if I didn’t try, what if maybe it was and I’ll always think we could have done more.

These thoughts hung over me as a dragged myself around the horribly packed shops in town, trying to get mum some lovely things before we all left to go to Wales. I was in charge of not just mum’s stocking presents but also with helping choose mum’s Christmas and birthday presents from dad. Mum’s birthday was on the 18th December and I wanted to make that special as well, but with uni work I hadn’t had much of a chance to organise anything (aside from a massage appointment I had hastily booked in the middle of a lecture). I felt annoyed at myself for being so last minute about everything, and this further added to my conflicting thoughts at how shocking it was to not be more prepared on what could be mum’s last Christmas and birthday. I had the hugely uncomfortable realisation that perhaps I couldn’t do better next year because maybe there wouldn’t be one. This was a sad and sickening feeling… tinging everything with a little regret that perhaps we should have appreciated more how limited our time with mum was. Maybe acting like she might not die meant we missed out on certain things that that understanding could have given us… but this is a complicated topic that I want to talk more about at another point.  

I was pushing everything away; repressing all my worry, ignoring what was happening and trying to make up for not being organised with mum’s presents (I had focused on this as being the evidence of my failure to think ahead). I think I was also pinning my unease on the fact that I wasn’t organised, as opposed to the fact that mum wasn’t well. The combination of all of this was getting more ill than I’ve ever been. By Christmas I was completely bed ridden with hugely swollen tonsils and a pain in my throat I didn’t think humanly possible (it sounds dramatic but I’m not exaggerating!) I think what might have been just a little bit of tonsillitis was made much worse by the exhausted and worried state I was in.

After mum was first diagnosed, I took on more of a caring role and this inevitably changed the dynamic of our relationship. However, over Christmas, mum was the one directly caring for me. She fed me soup in bed and helped me drink water while I tried not to choke on my hugely swollen tonsils. She wiped my head with a cool cloth and read me a book when I didn’t have any energy to even open my eyes. She also did that thing which parents do a lot when you’re younger and thought ahead for me, calling the doctors before we left fo Wales when I first mentioned my really sore throat to make sure I had some strong enough painkillers in case it got worse (and I was so grateful she had or else I would have been stuck with Paracetamol). 



By Christmas day I was in a very sorry state (see the delightful photo I’ve included). In the early hours of Christmas morning, I woke up with the most horribly painful sensations in my throat and on checking the time could see I was able to take another two painkillers. My stomach was so sore from taking them on such little food so I got up and went downstairs to try and eat something beforehand. Stupidly I tried to swallow down a crust of bread and some peanut butter (!?). This just contributed further to the pain and I ended up sat at the kitchen table sobbing, feeling completely sorry for myself, particularly because it was technically Christmas day.

Mum heard my trying-to-be-quiet wailing (aren’t I dramatic) and she came downstairs. She sat opposite me and helped distract me while we waited for the painkillers to kick in. She got me to do some tapping exercises on my head and various other things until finally the pain began to numb.



I always remember mum being a light sleeper. I think she must have been so used to years of waking up quickly when one of the four of us needed her and so never really got into the deepest of sleeps. While Ned, as the youngest, would be the one to wake her by crying, I would wake mum up by tiptoeing to her side of the bed when I was being kept up all night worrying (I used to be a big worrier). I’d tell her my fears about a super volcano ending the world and she’d tell me worrying about it wouldn’t change a thing, and then I’d creep back upstairs feeling calmed by mum’s words. Mum hearing me in this sorry state downstairs was such a beautiful reminder that no matter how old I was, mum would still be mum and would always listen out for me.

It was like we came full circle. In the two years since her diagnosis I had tried to look after mum as best as I could, taking on an almost motherly role at times. Then we ended up with me feeling like I was 6 years old again; having mum read to me, tucking me into bed, then hearing me cry in the early hours of the morning and coming down to help me. No matter how much the caring role had been slightly shifted to me (and I enjoyed the responsibility of looking after mum), that Christmas was the perfect opportunity to remind us of how we had once been before her stage 4 diagnosis.

One memory that has stuck with me from this time was on the evening before this dramatic Christmas day ordeal. I was feeling quite woozy from the Codeine, and lying half asleep in bed. I remember mum coming into my room, kissing me on the forehead and then telling me she loved me in a whisper. She said it with such meaning, love and sincerity and so quietly that I don’t think it was meant for me to hear. This is one of my most special memories.

It’s quite emotional revisiting this Christmas because it reminds me how much I miss this unwavering, selfless, motherly love and care. I’m struck sometimes with how I’ve settled into this new normal of life without her, and blurred the edges of what I’m missing and what it was like when mum was alive.  Of course I have the most amazing and loving dad (and I’m very lucky that we’re so close), but I sometimes just need mum. Most of the time I don’t dwell on what I’m missing, but when I’m reminded of it, it is searingly painful. I’ve realised it’s not just missing mum; it’s also missing having a mum.  

I also want to mention that being ill at Christmas was a welcome distraction from how mum was doing. She could discreetly go and have a nap and that was nothing because I was the one who had been in bed all day. I looked and acted more ill than she did that Christmas and so the attention could shift from mum not looking well to me.  

On our way to Wales for Christmas for the first time without mum

On our way to Wales for Christmas for the first time without mum

The first Christmas after mum died was actually much easier than I thought it would be. I was really glad to not be ill and actually enjoy Christmas lunch, and we were with a lot of family so it was not as obvious that mum wasn’t there. I was also not in tune with my grief and sadness then, still quite disconnected from it all. This Christmas, however, I found much harder. Christmas is always a wind down period where things get busy, but this year I noticed this unbudging layer of emotions that combined with the busyness made me more low than normal. On what would have been mum’s 48th birthday I just kept wanting the date to not be the 18th.  I had always thought that I wouldn’t be bothered by ‘significant dates’ that are so often mentioned when talking about grief, but on the 18th I was just irrefutably reminded that things had changed. With mum not here to celebrate with, I just wanted the day over.

I take being more emotional as a good sign of being more in tune with myself and my state of mind. I like that I let myself cry more often and more freely (even more openly – before it was very much a bedroom affair). It’s an acknowledgement that mum isn’t here and also serves as a reminder to be kind and forgiving to myself because even though its nearly been two years, it doesn’t mean it’s easier.  

On Christmas day morning last year, after we had finished opening our stocking presents in dad’s bed (a family tradition), Tom showed us a video he had been making for us all. It was a montage of the film he had taken on our last holiday altogether before mum was diagnosed again. Since mum died I have steered clear of any video of her and the more I have, the more nervous I am of seeing some. I worried it would sharpen the edges I have carefully blurred of what it was like when mum was around and I also didn’t want to have that feeling of seeing mum alive and momentarily forgetting she died.  

Christmas 2018

Christmas 2018

As soon as the film started I could hear mums voice in the background and then suddenly there she was, getting into the taxi as we made our way to the airport. Without realising it, tears were streaming down my face. Part of me wanted to look away, but the other part was transfixed. It was like watching our other life. The old life we had as a six. It was amazing to see mum as mum without cancer and how we all functioned as the family we had been before. However, it also left me with this horribly strange feeling that I really hadn’t seen mum in a while. This didn’t sit well with me. That’s the thing that happens as more time passes; it’s more time since I saw mum. While time going by has given me more of an opportunity to understand how I grieve and to feel more in control of it, it also just plays out a future I could never before have imagined; a future without mum. The more time that passes, the more of a memory she is. I can’t go ‘oh the other week mum said…’ it’s ‘oh years ago mum once said…’ and that’s just sad.

I still haven’t watched the documentary mum was in (for fear of how i’ll feel afterwards) but actually the film Tom made was beautiful to watch. It was so special to see mum and be instantly and effortlessly reminded of every little bit about her. It reassured me that even though nearly two years has passed, of course I haven’t forgotten certain parts of her (a big fear I had after mum died).  They are still accessible memories and I know always will be. Video of mum can just help me tap into those memories when I want them – and that’s really comforting to know.

Counselling and Croissants

There was a weekend in November last year when I felt like I was going through the motions of the day, but not really engaging properly in everything that was going on around me. I was really aware of it then because there were lots of family plans and I was around lots of people, but I just didn’t feel present. It was a foreign feeling and particularly unsettling on a weekend when I should have been happy and content but didn’t really feel anything. I wasn’t connected to myself and felt a bit like I was watching what I was doing from a distance. I realise now this was because while in coping with the fact mum had died by detaching myself from my sad feelings, it was also happening to happy feelings too. This really scared me.

I remember walking back from the tube station to my flat feeling more low than I could ever remember, and then feeling even more sad that I was feeling sad. I couldn’t think of anything I could do that could help me feel better so, with no other ideas, I googled ‘counselling services’ in London once I got home. A few people had mentioned to me that they knew people who had had counselling after a loved one had died, and with nothing else there to remedy how I was feeling I thought I’d just have a look. I found one that looked good (at least the website was nice) and was close by to uni so I emailed them about an appointment. They emailed back the next morning, but then I ignored it for a few weeks.   

I think part of the reason I avoided replying to the email was acknowledging that something was wrong. Another part was perhaps thinking that if I have help, then maybe it would mean I couldn’t do it myself.  I also disliked the fact that I was in this position. I wasn’t meant to ever need counselling in my third year of uni because of losing mum -  that had never been part of the plan. I’d always seen myself as resilient and capable and I wrongly thought that counselling could undermine that (or that it questioned those descriptions). Maybe I was also a little bit scared about what would happen if I went. Also (there are a lot of reasons!) I thought that ultimately mum was gone and nothing could bring her back (as if a- there was a solution and b- everything I was feeling was directly as a result of mum dying) – I later realised these were untrue assumptions and there was a lot tied into how I was feeling and why.  

In the end, while I replied to the email reluctantly, I actually quite looked forward to my first session. I was intrigued at what it would be like and was interested in what the counsellor would say. Would she maybe say I am grieving well? I think I almost wanted approval that I was doing the right thing (because no one ever tells you how to grieve or even what it means to grieve). Maybe she would say there was nothing she could do to help- mum had died and that couldn’t be changed. She could even have the answer to grief (ridiculous) and how to be ok (which of course I know now only I can figure out).  

A room similar to this…

A room similar to this…

Anyway, the room was exactly how I might have imagined. Intimate, cosy, warm and with a very comfy sofa. There were also some tissues positioned exactly as you would expect (discreet but easily reachable). As soon as I sat down and started to explain why I was there I burst into tears. When I mentioned to others that my mum had died I always was at a distance to the words, but in that room I sobbed and in a strange way, I really liked that I could just cry like that with someone else there. Normally I’d hold back the crying, or at least recover very quickly if I started to cry, very aware that there is little to say to someone who’s mum has just died. In the counselling situation where social norms don’t really apply, I didn’t have to be aware of my counsellor’s feelings towards what I was saying or how she might be feeling. I could just talk and talk and interrupt and cry and indulge in an hour where I didn’t have to be considerate to the needs of someone else (this took a bit of getting used to). 

However, I left the first session feeling drained. I think I had these hugely high expectations that the one hour would ‘fix’ what was wrong and that I’d feel a bit better straight away. I felt like I had repeated a lot of what I had said before and I came away feeling underwhelmed. I know this came in part to a naivety about what grieving means and how it can never just go away.

I wasn’t sure what pictures to include for this post… but I have many pictures of my different coffee and croissant moments so I thought i’d include this one taken in Greece last year

I wasn’t sure what pictures to include for this post… but I have many pictures of my different coffee and croissant moments so I thought i’d include this one taken in Greece last year

After mum died I started to recognise certain things as ‘life buoys’ - things that helped keep me afloat and not sink with the hugely sad feelings that threatened. Friends were a big life buoy, but so were happy moments and so I began to prioritise them a lot. The little things I enjoyed (like a coffee and croissant) were scheduled into my day along with other kind moments. I gave myself a lot of treats in those initial months (and as a result I spent more money than I would have...) but I needed them to help offset the sad feelings and thoughts. I think I expected that first session of counselling to be a huge life buoy (especially because at that moment I really needed one), but of course it couldn’t immediately be that.

Nevertheless, we agreed that 3.15pm on a Monday afternoon would be my weekly slot (I was a bit nervous at the commitment of it – I had imagined it could be quite ad hoc and not at a set time each week). By the time the next session came around I was a bit apprehensive… maybe even nervous about bringing everything up. Again, I had a cry, and for the 5 months that I went to counselling I cried every single time.  

One thing that I had been struggling with was the normality of life even though mum had died. Everything was carrying on the same and especially being in London where mum’s absence wasn’t as obvious, nothing in my week felt it had changed. I couldn’t get my head around how something so huge and life changing had happened but nothing really life changing was happening now (as in there was nothing to show for it). The hour a week of counselling became my acknowledgement that things were different now. It made me feel like I was actually ‘doing’ something about mum dying.

option b .jpg

It had also become very scary to confront a lot of the emotions I had been resisting. I was scared to have to face up to the enormity of what had happened and naturally, you avoid the things that scare you. Counselling let me see that I could incorporate these deep emotions into my normal day. I could be in the library one moment, writing my dissertation, and then having a huge cry an hour later and then be going about my normal day an hour after that (although I was usually very tired after the session and often ended up in Pret with a coffee and croissant). 

Recently I came across a quote in a book I’m reading (called Option B by Sheryl Sandberg and Adam Grant) that characterises a lot of what counselling gave me:  

 ‘It occurred to me that dealing with grief was like building physical stamina: the more you exercise, the faster your heart rate recovers after it is elevated. And sometimes during especially vigorous physical activity, you discover strength you didn’t know you had.’

Counselling became a space to see that I could tap into the sadness and be ok. I also felt more practiced in having a huge cry and then recovering, which meant I didn’t resist times when I wanted to cry in the future because I knew I’d be fine afterwards. In the moments when grief hits, it can be completely overwhelming and it’s hard to see how you can ever be ok again. Over the months I had counselling I became less afraid of these moments because I could see that the deep emotion could fit into my life as opposed to being completely separated and cornered off. I didn’t need to be afraid of it.

One of my favourite pictures

One of my favourite pictures

How you grieve is something that takes time and is hugely personal. I feel like I’ve accepted now that it is a part of my life I will always need to tend to and give space. I know that I’ll always have sad moments but then I’ll be ok again afterwards (and in a way I’m almost glad the sadness will still be there somewhere because I’d never want to not be sad about losing mum). I have also given myself permission for that to happen. As obvious as it may sound, letting myself feel something and not questioning it or exacerbating it (for example by being sad that I’m feeling sad, or more stressed that I’m feeling stressed) helps.  

There is a stigma around counselling and therapy. We are all expected to be super human and strong always and counselling, as I used to think, could undermine being ‘able’. There is a huge power in being able to understand your emotions and why you feel certain things, and counselling was a space to explore and understand more. Ultimately there is no time to do this normally so having a designated hour a week almost forced me to give it time and I think that is what I really needed. I didn’t just speak about how it felt living without mum, I also talked about the impact of the two years before and the responsibility I felt and the worry that I carried. There were a lot of things that I couldn’t have articulated before but in talking about them, I found connections.

I think back to the moments when I was much younger and felt really sad. Mum and dad would ask why I was upset, and I’d cry ‘I don’t know’ and then I’d cry even more because I just couldn’t understand why I felt like I did. Being more aware of my emotions has meant I am more in control of them. While I often really didn’t feel like opening up about everything and talking about it each week, counselling gave me the space and time to digest what was going on in a way I would have found hard to give myself otherwise (at least not while trying to keep going with my degree at the same time).

I would have never identified myself as a sad person and I have always been generally happy and positive, so in a way grief threatened what I had considered a core part of me. It has taken time to understand that being sad doesn’t make me a sad person and undermine all those things. Counselling hasn’t stopped me being sad but I think that’s what I needed to understand – I had the unrealistic desire to find a solution to my sadness about losing mum, when actually I just need to give myself permission to be sad and let myself feel it. 

Tea and toast and more mum moments

Mum used to love her tea and toast moments. It would be a cup of PG tips tea together with chewy brown toast with marmite and butter. She would often call on her way back from the station after work to put the kettle on and her toast down so it was nearly ready for the time she got in.  However, mum was very particular about how her tea was made and it took some time before I had mastered it. The trick was to pour the water from the kettle onto the tea bag as soon as the water had boiled (as in as soon as you heard the click – if you didn’t hear the click, you had to re-boil the water). Then the bag had to steep for a moderate amount of time (you couldn’t rush mum’s tea because you’d risk it looking like ‘cat piss’ [mum’s words not mine]). After taking the tea bag out, it was a splash of milk (and maybe a little more) so the colour of the tea was a solid caramelised brown. I make my tea how mum liked it and each time I do, I think of her.

Not a tea moment (I couldn’t find a picture of that) but the closest to it - a coffee moment in Ethiopia!

Not a tea moment (I couldn’t find a picture of that) but the closest to it - a coffee moment in Ethiopia!

My tea and toast moment has become a mum moment and it’s a good mum moment because it’s not sad. After mum died, I felt like crying was my only real and tangible way of connecting with her. I got into a routine of running along the canal near me in London as fast as I could, every other day, because that would always trigger a cry if I wanted one. The heavy breathing and heaving shoulders mirrored how I’d be when I cried, and my body would almost be tricked into it from the similar motions.  Running also connected my mind to my body. I had got really good at detaching myself from how I was feeling after mum died (a slightly disconcerting feeling once it’s gone on too long) and so running was a very grounding thing to do. I also enjoyed running because I felt like mum was having a positive influence even though she wasn’t here. It was like trying to make her dying a not all bad thing…in my head, by running so regularly, I was making myself ‘better’ because mum had died.  

I do still definitely feel close to mum when I’m having a huge cry (and it will always be a very powerful release), but it became a slightly intrusive activity. Having to cry to feel close to mum meant that if I didn’t cry, I wouldn’t have a ‘mum moment’ in my day. I felt a pressure to actively find time to feel sad and get that closeness to mum, and while in the initial months after mum died that was ok for me, it didn’t really make a future without mum bearable. I imagined having to forever compromise being happy to feel sad to then feel close to mum (I hope this makes sense). I was also getting a bit obsessive and dependent on running. I’d feel nervous going somewhere if I couldn’t go on a run, and would want to bring my trainers with me if I ever went anywhere for more than a few days. Like with my tea and toast moments, I want to find more positive mum moments that can be part of a normal day. Running and crying use lots of energy and can be quite overwhelming things to do.  I want to find ways to think about mum that can be part of a normal, daily activity, as opposed to being a completely separate thing… almost like merging grief and life together; making space for it.

After mum was diagnosed the second time, we changed her diet dramatically and for a few months she went completely vegan (before we started adding in a few of the foods she really missed). Sadly, this meant that mum stopped drinking milk and having black tea, and so no longer had her tea and toast moments. Mum’s diet change was a big part of her post-diagnosis life and we threw ourselves into reading about the different things you can do to be as healthy as possible.  Because I was in my gap year, I had so much time to dedicate to mum and our plan to help her get better. We were completely in sync in that year and nearly everything we talked about was about what we read, what our next plan was and how we were going to help mum live as long as possible. While I’m now appreciating more the strain of those two years, I am very grateful I had this year with mum because it was an opportunity to achieve a closeness that would never have otherwise been possible.  

One of the first changes we made was introducing a homemade, cold-pressed, vegetable juice into mum’s day each morning. I was in charge of making this juice. We had read that it wasn’t good juicing lots of fruit because without the fibre that you’d get from actually eating the fruit, it could be very sugary (and we were trying very hard to avoid sugar). Combined with this knowledge was also wanting to take the opportunity to fill mums juice with as many vegetables as possible. However, in the end, this meant that mums juices just consisted of a range of vegetables with not much consideration to the taste (poor mum). On at least two occasions, after forcing down a juice I had made her, mum threw it all back up (in both juices I had put in a whole (huge) beetroot which, after some more reading, is apparently a very ‘nutrient dense’ vegetable – so [evidently] a whole one was a bit too much to handle). After a lot of trial and error, we got better at making juices that mum ended up enjoying (or at least not hating). We worked out that ginger is very good at masking the taste of loads of veg and so are lemons (particularly for getting ride of the taste of kale). Mum’s favourite (and friendliest) juice ended up being carrot and celery and, if I was feeling generous, half an organic apple.

I could go on and on about all the diet and supplement related things we did in those two years, but the main thing it gave me was an active way to help mum. I could put my energy into making juices (however disgusting they might have been), cooking vegetarian and vegan food (to the dismay of Tom, Will and Ned) and helping to create a stress-free environment at home.  On a side note – the vegetarian cooking generally went ok and the only time I made something completely inedible was when when I put lime peel (what I thought could replace ‘Kaffir lime leaves’….)  into a Tom Yum soup I was attempting for mum. The lime peel completely ruined the whole soup and it genuinely was disgusting (so disgusting that I even didn’t make mum eat it!)

These lifestyle changes were a big part mum’s post-diagnosis life, and I hadn’t really appreciated the impact that this period would have after mum died. For the two years before she died, mum was the centre of everything for me. She was my purpose and I wanted to do everything I could to care for her. However, after mum died, I lost this purpose - although there were two sides to the feeling. A small part of me almost (guiltily) felt relief about not having to worry about mum anymore. I had got used to the worry and the pressure of thinking about all the things I could be doing for her, only realising it had been there once it was gone. However, I felt completely uprooted. I didn’t really know myself if I wasn’t in that caring, responsible role that mum and I had carved out for me. Mum had grounded me. My way of dealing with her stage 4 diagnosis was to look after her, but then after mum died I didn’t really know what to do. For two years I hadn’t really processed what was happening because I was just putting my energy into mum. However, in dealing with her death there wasn’t anything to ‘hide’ behind anymore. The only certainty was that it I couldn’t do anything to change it. I think it goes back to the tendency to always want to be doing something, and trying at all odds to avoid accepting that sometimes, I actually have to just feel the feeling.

Mum being mum on a work trip (not related to the lion!)

Mum being mum on a work trip (not related to the lion!)

One of the things I find hard is having more memories of mum post cancer, but less pre cancer. Mum didn’t want us to remember her as ‘weak’ (which of course she never ever was). She wanted us to remember her as the active, energetic busy body she had always been. I’m sifting through memories, but the memories of mum after her diagnosis seem to be more ingrained in me. I want to remember more the times of mum being mum without cancer - I know she’d want that too. I’m almost angry that the post-cancer memories dominate because they intrude on my memories of her as she had been for nearly my whole life until cancer ‘rudely interrupted’. I know that how mum faced her diagnosis is in a way the best example of the hugely strong and determined woman she was, and I know she still remained mum, but after her diagnosis our lives changed completely. Whilst we found a new normal, maybe I’m also grieving for our old normal and for my relationship with mum when we didn’t have to worry about cancer.

I think that’s another dimension to grief; I am sad about so many things as well as losing mum. I’m sad for our old family life before cancer, and each time I mention it’s just dad at home (as opposed to mum and dad) I have this feeling that I’m talking about someone else, not me. I’m sad for dad, sad for the boys, sad for my grandparents, sad for mum’s siblings, her friends, but I’m also so sad for mum, that she had to die much before she should have. I could go on forever about all the the things to be sad about so I’ll stop, but what I’m trying to say maybe is that grief permeates into every aspect of life and there are so many things to consider and be sad about because of it (which I know might be obvious, but I think the fact it touches upon every part of life can sometimes make it that bit more exhausting). I think in appreciating this, I am learning to be more forgiving of myself when I have a low day and then attempt to rationalise my feelings, because it really shows that losing mum is just sad, and there is no denying it. I think that’s also why it’s harder to compartmentalise grief (at least for long periods of time) because nearly everything relates back to mum, however hard I try to avoid it. This understanding means I tap into the sadness more voluntarily now. By this I mean if I sense a missing mum moment, I try not to immediately distract myself and acknowledge it instead (easier said than done). I know if I don’t, something else will tap into it at some point without warning, and if I haven’t had any mum moments for a while, it can then mean a HUGE outburst of emotion that had just been building up.

Anyway, this has been a bit of a longer blog than the previous two! As with my tea and toast moments giving me a mum moment, writing this really gives me time I feel I am giving to mum, and I am very grateful for that.

Mum used to write poems and I came across a little book of them (which is now one of my most treasured things of mums) - I thought I’d share this one…

The 214 - written in 1993 (not the best picture of it!)

The 214 - written in 1993 (not the best picture of it!)

Graduation, Grief and a Black Eye

I hadn’t really thought much of graduating from uni this month, and was expecting it to be a bit of a tedious day full of formalities and queues to get robes fitted and pictures taken. However, while yes, there was lots of queuing and smiling for pictures, it was actually really nice to wear a gown and celebrate getting through the past three years. Yet one thing I hadn’t anticipated was how emotional I would be. While the actual graduation day was tear free, all of last week I was much more emotional than I have been for a while. I don’t think I had expected the feeling that fully finishing uni would have. I chose UCL with mum, went to the open day with mum and then started uni while mum was alive, but I’m now finishing without her. Mum was very much part of my uni experience…but now I’ve finished, mum won’t so much be a (physical) part of my choices that come next. Maybe it’s also that feeling of mum not knowing what I’m doing now. I liked that even a year on from mum dying, she would have known where I was in life; but now that wont be the case. Added to the mix of this is recognising that I could really do with having mum here now to help me figure out what I’m doing next.

Mum graduating from St Catherines College Cambridge

Grieving is really quite scary sometimes. To fully acknowledge the fact that one of the people you love most in the whole world has really gone is quite impossible most of the time, but when that realisation hits you, it is unbearable. Naturally, it’s easy to start trying to avoid this unbearable feeling.  I think we can get very good at avoiding things that scare us or make us feel sad. Physically we dodge pain and learn to avoid the things that hurt, so I think emotionally that’s a strategy too (but one that’s not at all good in the long term). In many ways this is a coping mechanism; it’s protective to not be able to tap into the hurt all the time. What I have noticed is that as time has gone on, I am a bit less scared of the hurt and that deep feeling of loss, but as a consequence more emotional because of it. I think this is partly because now I can afford to be more emotional because I have the space to do so (the biggest reason I think for why this year out is so important).

After posting the last blog, and receiving lots of lovely messages (which really meant a lot), I was reminded of my mum-less reality again (something which is normally well avoided!) Before mum died, if I mentioned to someone how she had stage 4 cancer, I’d (naturally) get lots of sympathetic comments and sad faces. I remember thinking; ‘why are you looking so sad and shocked, mums fine’. I felt that their reactions were unwarranted and that it was almost overly dramatic. Yes, I knew mum had advanced cancer but in my head she was going to be fine. It baffled me that others didn’t understand this (I know how I was wrong now.)

I would have imagined that after someone dies, it would be impossible to stop crying. But actually sometimes, I want to be able to start crying and let myself have an uncontrollable sob. Crying is such a release and fully connects what I’m feeling in my head to the sensations in my body. In a way I like it when I’m outwardly emotional because it’s acting like something horrible has happened. There is no physical proof of an absence… and when life goes on as normal, I sometimes feel I have to prove to myself that something has actually happened. (Alongside this though, I’m slowly learning that crying doesn’t have to translate to me actively honouring the fact that mum has died; there are other ways of doing it.) That life can go on without mum is both reassuring and heart-breaking. I almost want to see on myself this change that has happened. I’m not talking tattoos (although Ned has mentioned getting mums mobile number on his chest {!?}…) just something that can acknowledge this change for me (if that makes sense). 

About 2 months after mum died I walked into a lamppost. I woke up the next morning unable to fully open my left eye, which then progressively got more and more purple (I’ve included some flattering pictures of it below!) My black eye was funny for a day or two but then just a bit annoying. However, one thing I couldn’t help but notice was the really sympathetic looks I got as I walked around London. This was particularly the case on the tube when I was coming back to Brighton with two suitcases and an eye that looked like I’d been punched (it took some convincing for dad to believe it really was just a lamppost). While this sympathy for the eye injury was unnecessary, I quite liked that for a week or so, there was a little physical manifestation of all the hurting of the past few months. For that week I appeared to some people as fragile …and fragile was how I felt inside. While 90% of the time I don’t want to be treated like this, occasionally it would almost be a relief to have a little of what I’m feeling on the inside show on the outside. When this unbearable feeling of grief does hit, it is completely exhausting and debilitating. I almost wish I have the flu or something to physically prove to myself that I have reason for weakness (even though I know I very much do) and something that forces me to let myself feel that way.   

I think this is one of the hardest things about grief; it’s invisible and there is no timeline for it. With a lot of physical illnesses (just as an example of something that can be debilitating!) there is a predictable trajectory and you know what to expect. With grief, it is so up and down and personal that you have to find a way for it to fit into your life. Almost morphing around it… making space for it. Not at all that I’m saying grief is an illness… but it’s that feeling that something is wrong… that feeling of being ‘off’.

In the moments that I feel a bit low, it’s sometimes hard to discern whether what I’m feeling is sadness for losing mum, or sadness for something else. Everything comes back to missing mum. Everything is made worse by missing mum. One thing I’ve noticed is I can project my sadness of missing mum onto something that is more in my control to deal with. So for example, it can seem that I’m fixated on one really irrational thing (lets call it x), and then I think this is ridiculous I don’t actually care about x, and I keep thinking about how I can change or deal with x when in actual fact I’m just really missing mum but I don’t want to admit it to myself. At least with problem x I have more chance of sorting it out than finding a ‘solution’ to mum being gone (but in the process I feel a bit silly to have cared about x so much). I’m learning to see that sometimes if i’m fixated on a small, seemingly meaningless thing, it is actually an indication that I need to give myself some space to be sad…I hope this all made sense!

Anyway, I worry that this is a really sad post about grieving…(I just read that back and thought of course [try as I might] I can’t get around the fact that losing someone you love is undeniably sad). I want to highlight though that while yes I do have really sad moments, I am ok a lot more of the time than I am not (be it by coping/avoiding/actually feeling good/being busy… all of which overlap!) and I think we are all a lot stronger than we might otherwise think. When I feel strong I feel so resilient and the main thing is knowing that a down is always followed by an up.  

Losing mum - an introduction

This is going to be a sort of introductory blog post. I have now finished uni and currently have no definite plan (!) so actually having a project and a focus will be good. More importantly, I have a lot I’d like to write about. I want to try and articulate aspects of the process of losing mum but also how life has been without her (something I never thought could be possible). By writing about these things, I think I can almost help myself try and understand it all.

We don’t really ever talk about death, or even the process leading up to it. Before mum died I couldn’t understand how someone could be living one moment and then not there the next. I think that helped me believe that mum couldn’t die because if I couldn’t understand it, in my head, it couldn’t happen. While this naivety was a coping mechanism, I also think I could have benefited from being more aware about certain things, some of which I’d like to talk about in the coming posts.  

This next year will be a year out… another gap year. My first gap year before uni ended prematurely after finding out mum had been diagnosed with cancer again. I flew home the following day – a horrible ordeal that I’m sure I’ll write about at some point. I was three weeks into what was meant to be an eight week trip in Peru shortly followed by three months travelling around South East Asia (trips I’d funded by working 40 hour weeks at Subway…perhaps another story). So not only do I want to (re) visit these countries, along with hopefully applying for a masters, I also want to do a bit of processing and grieving in my own time. Mum died half way through my second year of uni and while it was good to have exams to give me some structure in the months that followed, I found in my third year, being sad and feeling this lack of motivation that never had been a problem before wasn’t at all sustainable. I was only allowing myself time to be upset when I didn’t have an essay to write or exams to work for – but this meant I found it hard to find any time at all and I ended up feeling slightly detached from everything. I’d try pushing emotions away and was getting very good at coping. Coping is important and necessary (especially if I want to get on with my day) but it also is a short term solution that uses a lot of energy. I’m particularly aware of this fact when I’m tired (which also means that I am even more vigilant of being tired). So, I suppose what I’m saying is this year out is also an opportunity to grieve in my own time – something which is also slightly scary. Everyone grieves differently and for me a default position is ‘be ok’ or ‘how can I feel better about this’ – but losing mum isn’t something I can just try and rationalise in my head. I need to let myself have those sad moments and days and not feel guilty for it getting in the way of other things (something I have to remind myself regularly).

I also need some of this year to sort though mum’s clothes (which are currently piled high in my room). I thought it would be an easy task but it's proving a lot harder than anticipated. If I make two piles (one for charity, one to keep) – the ‘one to keep’ pile ends up looking almost like the pile I started with.  Now anything mum related has so much extra value.  A scrap piece of paper with her handwriting on no longer goes in the bin but in the bottom drawer of my desk (which is threatening to overspill). A dress that I’ll never wear now I think I could wear in 10 years time. Even clothes I know I’ll never ever wear are memories of mum and of the time she wore them. Its like throwing something away is giving away some irretrievable piece of mum. It’s a bit scary relying on my actual memory for memories… so something tangible, like clothes, are almost like memory cue cards (if that makes sense). This blog may have similar benefits – like a retrospective diary.

I think I’m also reluctant to sort through mum’s things because it's removing a presence in the house and there’s that fear that it could be like mum was never here. The second drawer of the chest of drawers in mum and dads room is filled with lots of mum’s toiletries. It’s a drawer I’d search through when mum was alive (discreetly of course), and even now, to find her nice Dr Hauschka face cream or use some of her lovely smelling organic guava moisturiser (both of which are finished but I still like having them there).  I like that even though mum’s gone, I can still go to her drawer for something I need. It's like she’s almost still here… still filling an (albeit very small) motherly role of having the nicer more expensive beauty products than me.

We are all in France at the moment, somewhere we came every year with mum. While this year more than the last I am even more aware of the fact we’re a five and not our normal six, we still manage to enjoy the sun and spend the days swimming, reading books and playing boggle and cards. The other day I dealt cards for six players – only realising when Tom pointed my mistake out – but I was glad I had, because it acknowledged mum. On occasions it is a bit overwhelming being somewhere where all five of us desperately miss mum. At uni it would just be me, and my pain I could manage. It's harder seeing the people you love hurting and here I can’t avoid as easily the fact that mum isn’t here anymore…but maybe that’s a good thing.

I have written a lot lot more than the introductory blog post I was planning! Amazing if you got to the end of it – thank you for reading. 

Ella X

(I wrote this blog a few weeks ago but couldn’t post it onto Cancer Is Pants until I could hack into mums Gmail account (which was where the ‘forgotten password’ email gets sent). This is a trivial and unanticipated problem you have deal with after some dies (amongst absolutely everything else) and of course I couldn’t just ask mum. After numerous attempts at guessing various combinations of our Netflix password and mum’s computer password (worrying about being locked out for good after what could look like ‘suspicious activity’ on her account in France) I discovered mum had saved it in the notes on her phone. I had a lovely moment of thanks for mum for helping despite not being here and finally managed to change the password and log in.)

I've posted some pictures of us all this year in France (also because big blocks of text look really unappealing). Its sad not having any of mum in - so i've included some of mum from our last summer all together in 2016.

15th August 2017 - 6 months on

We are having to get used to being a family of 5. It always feels like someone is missing when we sit at the dinner table, and I still sometimes instinctively bring 6 plates to the table to lay. For the first few weeks after mum died I would wake up with a feeling that something just wasn’t quite right – and even sometimes now I find myself just almost waiting for mum to come back and the not-quite-rightness to resolve itself.

Its strange looking back on the past 6 months. We have been so deeply sad but have also had happy moments as our new unit of 5. When one of us is down, the rest of us are ok and feeling stronger. We all help each other. It's just up and down always and what helps is knowing that when you’re feeling your saddest, it’s possible to push through and feel ok again. Its good to remember that – how fluid emotions can be.

One of mum’s biggest fears before she died was whether we would be ok without her. She was (and always will be) the heart of our family and imagining a life without mum was not ever possible – I still can’t quite believe it even now. However, somehow life still keeps going forward and we are doing ok.

I love talking about mum. I mention her as much as I can. Sometimes it's as if she’s not really gone because when I talk about her she could almost be here. It's sad to think that the memories I talk about will become more aged and it's sad that we can’t make any more of them. However, its not just memories that mum has left us with, its also her impression on us. She’s in everything we do, everything we think and every way we act. So while the memories of days might fade, her imprint on us won’t ever.

We are all in France at the moment; somewhere we come every year that has happy memories of mum. Tonight we are eating ‘garlic prawns’, which is as it sounds - prawns fried with lots of French garlic (oh so complicated). It was one of mum’s favourite dishes to cook here. We are not really marking an occasion because we think of mum always, but it's nice to do something that mum would have enjoyed today, and it's nice to be altogether as family.

I could write so much more about how these 6 months have been for us and how we are all getting along, but for now this is just a note to say we are doing ok. 

A eulogy for mum

This was taken soon after dad proposed to mum with a temporary engagement ring. Mum was just 23. 

This was taken soon after dad proposed to mum with a temporary engagement ring. Mum was just 23. 

When I was younger, I used to worry about all sorts of things. When I say these things now they are going to sound a bit silly but at age 10 they would keep me up at night. I remember lying in bed with my stomach twisted in fear at the thought of earthquakes, tsunamis but most of all super volcanoes. Super volcanos really did scare me the most.

After what would seem like forever tossing and turning in bed trying to go to sleep but with these dramatic images of super volcanoes exploding over Brighton, I would creep downstairs and into mum and dads room to mums side of the bed. Mum was very good at waking up immediately and she would lie and listen to me tell her what I was worried about as if it were the most legitimate worry in the world. Then she would say ‘Ella, worrying about it isn’t going to do anything. Its just going to mean you don’t sleep. If its going to happen (which it wont) you worrying about it wont change it at all’

This would then immediately qualm my fears and I remember so well that feeling of worry turning to nothing – the realisation that I was just wasting my time thinking about it.

Mum had that power you see. With only a few words she could turn your mood around. She always knew the right thing to say. She was a problem solver and a ‘do-er’.

Mum approached her life, as well as her diagnosis, with this active and positive approach to things. Her continued determination never faltered.

The day before mum died I helped her to the bathroom so she could brush her teeth and get ready for bed. There are about 7 stairs going from the bathroom to mum and dads room and once she had walked up them once (on the way back from the bathroom) I said mum why don’t you walk up them again as a bit of exercise (because you’ve been in bed all day). So mum walked up them again and then clambered down and up them one more time without me even asking (so doing it three times in total)

Before bed mum then stretched her arms up to the sky and then walked up and down with me for a minute to get some blood into her legs.

I’m telling you this because I think it just described perfectly what mum did till the very end – she kept going. She never gave up. Even when all the odds were against her she just kept going. She never once accepted that her diagnosis would mean life should stop and this is how I know we will face life now without her here – we will keep going.

One of mum’s favourite quotes comes from a book called ‘A man’s search for meaning’, written about a man’s experience in Auschwitz:

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

This is exactly what mum did and I think it has to be one of the hardest things to do – because the easiest option can often be to just give up and accept what’s happening. The easiest thing to do is to assume you have no control. // Mum certainly did not just accept she had no control – she found control.

I’d always remind mum that with everything that was happening we as her children were learning so much. This ability to recognise that you have the power to decide what shall become of yourself, mentally and spiritually, can take years to learn. You can learn through words and be told that’s where your control lies, but every day mum was teaching us this in her actions. Mum chose to face her life as well as her diagnosis with optimism, determination and energy. Her spirit really was unbreakable.

When we were younger mum would religiously read us a story before bed. One of my favourites that she read was a book called ‘Pollyanna’ – about an orphaned girl who goes to live with her only remaining relative; a stern and cold aunt Polly.

In the book, Pollyanna plays ‘the glad game’ – something her father had taught her to do. He believed that no matter what happens, there is always something to be glad about and we should always look for for the positive aspects in every bad experience. When I was younger – and even now - me and mum would play this ‘glad game’.

Mums diagnosis proved to be the biggest test of them all for the ‘glad game’ but sure enough mum found ways for it not to be such a bad thing. It meant more time with friends. It meant we appreciated each happy moment more. It meant we became closer and stronger as a family.

To find the good in every bad was something mum taught us and now will give us the opportunity to put into practice.  

These daily lessons that mum has given will carry on. She has had such a profound impact on not only everyone she met but also on who we are and who we will be.  This is comforting because, in a way, I know she will always be influencing us in ways that sometimes we might not even realise.

To lighten the conversations about what it would mean to die I would tell her that actually, if she died, we would probably listen to her more because she wouldn’t be able to argue back. I’d say ‘mum, of course we can live without you’

Of course when I said that, I didn’t mean that it would be easy and I didn’t mean that we wouldn’t miss her. What I meant is that we will keep going and we will learn to live without her. But learning to live without her doesn’t mean she isn’t here, it just means we have to listen more carefully. Because like mum chose to face everything with determination, optimism and energy, we are going to choose to face life without mum in the same way. Her lessons will continue, and she will inspire us always.

Reduction in tumour activity; talking cancer and blue legs

I am back from my second TACE treatment in Frankfurt. This time to my left lobe. Prof. Vogl was decidedly more chatty this time for the few minutes I saw him while lying on my back in my delicious hospital gown. He had looked at the MRI scan that I had a while earlier that morning and reported evidence of reduced tumour load and tumour activity. The latter being more important at this point I understand. This meant he could go ahead with the same cocktail on the left lobe. I will need one more go on each lobe - so two more trips to Frankfurt over the next 2-3 months. But to hear the understated Professor Vogl say he thinks we are ‘on a good path’ makes me feel confident and I was considerably happier having heard his conclusion. 

The days before going had been difficult. My left lobe is really quite uncomfortable, it presses on my stomach if I lie in a certain position and I have to prop myself up in bed. It had also affected how I walked which, possibly tension added to the mix, had given me a sore upper back where the muscles are taut. All these complaints seem to have melted away with new hope that things are going in the right direction (except the discomfort in my abdomen which prevents me lying on my front). It is amazing how your mental health so directly affects your physical health. I had a dark cloud hanging over me, worrying that the treatment may not have worked and wondering if this was the case, how many options there would be left given the tumour load was already quite high in the liver. The moment Prof Vogl communicated his conclusions all those worries just fell away. He was happy for me to return in early January which essentially gives me a free pass over Xmas and New Year. A wonderful few weeks to enjoy my family and friends and indulge in being extravagantly Xmassy. 

This has involved so far the purchase of a silver wool jumper, putting up the mistletoe lights; buying a small wooden German christmas tree ornament with lots of wooden decorations; making the annual advent calendar (a wooden calendar with doors for each day of advent which I fill with chocolates and sweets); retrieving the gold plastic wreath and hanging it on the front door (sounds tacky and honestly I have usually had holly wreaths but this gold one was quite pretty and I am now reaping the rewards of not having to pay for a wreath this year - felt very pleased with myself); purchasing 2 glass star candle sticks for our kitchen table (using my 20% off Home Sense voucher - which I get on certain days for being the nominated friend or family of Tom who is currently working as a Xmas temp there); buying some Xmas cards in my annual attempt to send my loved ones an actual physical message (usually the first half of my address book receive one, the next few possibly after Xmas and anyone after H is lucky to receive one at all); and the decision to join in the office competition for the best decorated desk space.

Ella came home one weekend recently with agreat friend of hers from Denmark who bought me a present of some make your own decorations. She patiently worked with me for far longer than should have been necessary to teach me how tomake them. My spatial awareness is quite simply hopeless. I did eventually master the heart shaped decoration but the star remains a struggle. My intention is to decorate my desk using my own almost home made decorations - which I reckon ought to win me some points for effort. We have set a date for a Xmas party and I have just bought the Xmas treewhich is usually an entire family affair but with half the family elsewhere - Rupert, Ella and Ned, Tom at work and William at the library as he has mocks next week - I made the choice all by myself for the first time ever. This will I know invite comments about either its height, the level of bushiness and how lopsided it is. I decorated it this evening with Tom and Will. Spotify has various Xmas song playlists and I have begun to listen to these almost on a loop and I have Xmas presents and wrapping paper strewn around the house as I decide to fill odd free moments with a bit of wrapping up, only to be distracted and wander off leaving it slowly taking over any spare space in the house. And then there are the carol concerts I am planning to go to. It all sounds rather desperate but it is in fact rather wonderful. If you think it might all be taken away and then you get it back you hoover it all up - no question. The children have also received their annual advent calendar from my Mother. She now has 15 grandchildren.  This is not so much a tradition anymore but an institution. Every year a huge envelope arrives with calendars for the kids. There is a bit of bartering about who gets what - Ella always seems to get the glittery angel or manger scene. This year she accidentally left hers at home so I am enjoying opening it. No holding back. I remember loving it when my calendar from Mum arrived at school. I would get out of bed first thing in the morning, it was always cold, and tiptoe over to it to open the little door. It was a countdown to going home and a to my favourite time of the year. 

The tree is now up. And we have had only one incident so far with the dog gobbling a fluffy sheep decoration. Actually I am not sure there was much gobbling involved, mainly just tearing it to almost unrecognisable pieces. I noticed something under the kitchen table and on closer examination realised it was a head. The body itself was strewn beneath the culprit's (Melka) favourite sitting place. 

My trip to Vogl this time felt more straight forward. One of my best friends Zoe, who I have worked with for many years, came with me and we basically non stopped talked and laughed. Her task as primary assistant involved, in addition to diverting me with sparking talk, carrying my bags on the way home, be with me through the day of treatment and then helpme take off and put on my trousers, socks and boots after the treatment. This time we worked out that she could come into the operating theatre and watch what was going on. The benefit of having someone else there is they can hear what is said and help you interpret it when it is all over and you want to dissect themeaning to the nth degree. She was sat by the wall with a ring side view and made to wear a heavy lead body protector to prevent gamma rays, or whatever rays the machines Vogl uses give out. This time round the time between being prepared and having the IV line up with anti nausea and painkiller injected in and Prof Vogl arriving was far shorter than last time. Last time I was definitely a bit whoosy and floaty when he arrived and did not really feel any pain just pressure - this time he entered pretty soon and I was still very much alert and not floaty at all. When his big needle appeared I asked in a frantic but pretending to be very together and calm type of voice, if he was going to wait until the painkiller had really taken hold. But he said it would eventually and just carried on. This really was quite painful and I definitely squealed loudly (this time he was going through the femal artery on my left) and he had to inject a good deal more local anaesthetic directly into the area - which left me with a totally numb leg for quite a few hours. One of the main impacts of the procedure is that for a couple of days it is very difficult to lift your leg or put it into certain positions, so I shuffled along the long corridors at Heathrow with Zoe laden down with all our bags as we tried unsuccessfully to flag down a buggy. 

This time I had cleverly remembered that as after the procedure it is impossible to wear my relatively tight jeans I needed to pack some soft leggings. Last time, once on the ward under observation, Sophie, who was my assistant number one for that trip, went in search of some cheap leggings so that I would have something to wear when it came to leaving the hospital. She returned with possibly the most ugly blue leggings with plastic dark blue stars splattered over them and elasticated bottoms. It would have been hard to have found anything more unattractive if I had paid her. But I had no choice, knowing that public exposure would be minimal between the hospital, the taxi and the hotel, especially as it was dark by the time we got back to our room. The next day my leg was not better and it was clear that I would have to wear this monstrosity of a piece of clothing to the airport and on the plane. When I arrived home I was very tired. 

Rupert had run me a bath and Ella made me my juice. Rupert chatted as I undressed and heaved my leg over the side of the bath ready for a good soak. I looked down and honestly my heart almost stopped. My legs were blue. Panic just welled up - the operation must have gone wrong, maybe the artery was blocked (my biology was never very good). As Rupert updated me on family and work I feigned total calm surreptitiously grabbing my phone which was on a stool nearby and started googling ‘symptom checker, blue legs’. The following medical conditions are some of the possible causes of leg blueness. Vascular insufficiency; coagulopathy; haematoma; peripheral vascular disease; arterial embolus… Or A bluish tinge to the skin is known as cyanosis. It is a very serious sign of low oxygen levels and build up of carbon dioxide’

I felt tired but I didn't feel that bad. My heart just started pumping and pumping and I felt light headed with shock. What was panicking me was not just the dangers of what might be happening physically but more concerning was what this would say about my quest to outsmart my disease and navigate my way through it all. I envisioned myself being rolled into A&E on a trolley; whispers ‘advanced cancer’; lots of well meaning pained faces; ‘tell us the event up to your legs turning blue and what other symptoms do you have’  ‘oh…so you have been to Frankfurt, arrived back today? what were you doing in Frankfurt’ (eye rolls - here we are mopping up after some foreign medical tourism disaster) - I could see the front page of the local Argus ‘woman who’s campaign we supported in mortal danger from complication from treatment in Germany’  - what about all those people who have followed my story and want to know how it goes for themselves or someone they love. I just sat in the bath staring at my legs, grunting acknowledgement in different tones to make out I was listening intently to Rupert, breath shallowing from shock, mind racing - do I call 999 now - perhaps I should rub and get some blood into the legs - stand up and gravity might help. So I stood up and began rubbing furiously. And then a very strange thing happened. The blue started coming off in my hands. And the penny dropped. This was not cyanosis or vascular insufficiency this was staining from disgusting cheap blue german (or possibly Chinese) leggings. Honestly the feeling of relief was almost worth the panic. And then the ridiculousness of the situation which has kept me going for a quite a while - making me chuckle every time I think of it. 

Working out what to do next withmy cancer treatment is difficult but I have discovered an amazing woman, who I mentioned before, she is Grace Gawler and has a foundation. She describes herself as a navigator. She has worked helping people with cancer navigate the many options and directions for years and is totally up to date with developments globally. She is connected with some of the most forward thinking oncologists and researchers and has helped me work out what to do given my specific situation. Unlike my oncologist, who is able to offer me only what is available and registered for use in the UK, she can identify potential therapies and advances wherever they are. This is tricky as I have to work any such care in with my oncologist who remains my primary clinician - but it puts him in a difficult situation.  Prof Vogl for example simply cannot discuss each individual case with the primary provider. He assesses each patient on whether their clinical condition and treatment profile makes them eligible for treatment and in my case Grace becomes the interface. She helps filter those people who she knows would meet his criteria(I send her my bloods and other information) and then if he accepts you she will help make the first appointment. I pay for Skype sessions with her to talk through my options but also for example my supplements. She has already provided me with information which has made me change some of my supplements. I have stopped coffee enemas during the chemo treatments - as while good for helping with liver toxicity - in this case I actually want to keep the chemo in the liver to do its job. I feel so much more secure having someone with her knowledge helping me work out what to do. As she is not a provider herself she is able to share information, contacts, advise from across the spectrum knowing what my own situation is - geographically, my family, job etc - anything that makes a difference to what decisions I might make. Ultimately I am responsible but I trust her and this has made my job of working out what to do much easier. I was in danger of becoming a fantastically broad generalist with not enough specific knowledge. 

I also share ideas with others I have met on line - often with broadly similar disease - and talk about what we have done and are thinking of doing and share information about treatments and advances or problems. The worldwide web really both a dangerous but also incredibly liberating place to connect and build networks impossible just a few years ago. I feel one of a tenacious group of utterly determined individuals who want to stay alive and are in search, as I am, for strategies which might help them do so. Thank goodness I did not die of some blue leg syndrome after my Vogl treatment or this would forever be on the web and deter countless people. That is the danger of the web. There is one blog about someone with advanced cancer, who was in a bad state and sought care from Vogl - it was not successful and he did die. But he also documented in painful detail the treatment and that it did not work and that he was too far gone. I don't know how many times I read this and it did deter me from seeking out Vogl independently. But Grace gave me confidence, she knows his record and he is well published. I could have been ‘British woman with terminal cancer seeks treatment in Germany anddies….Louise Howes of cancerispants fame died tragically after returning home from experimental treatment in Frankfurt this week. The treatment is not currently available in the UK for people with metastatic breast cancer. A spokesperson for the NHS warned patients to avoid being drawn in by claims of extended survival by clinicians offering care that it currently not approved for use in the UK’. But I was not - and anyway it is not experimental at all - but quite established for primary liver cancer and in some places for colorectal cancer metastasised to the liver. I am in no doubt it will not be long before it is made available to breastcancer where the disease is dominant in the liver. 

My recent meeting with my oncologist was a bit awkward as he clearly, and unsurprisingly feels that it is difficult for him to safely treat me if I go elsewhere for treatment he is not responsible for. I share details of the treatment. I would really like to be choosing the route I take more collaboratively with him but know that he has to be careful and is to some extent bound by what is approved in the UK - so how can he condone treatments he is not able to refer me to. But he has been supportive. But it is a quandary. I do not believe if I rely solely on treatments available in the UK that I will stay alive as long as I hope I do by taking advantage of treatments that are more targeted that I cannot get here. I know there is a risk involved but there is equally a risk simply working through the current treatments on offer here. So - what to do. Be bold as there is quite a bit as stake - my life no less. I do have a lovely team in the UK who care for me - I think they think I am bit of a trouble maker - polite but not easy to pin down. But one of them recently kindly said ‘I don't think anyone is judging you Louise’ and that made me feel better.

There has been a growing discussion about ‘How to talk Cancer’. There was an article in the New York Times last week and this was shared on the chat boards of Inspire (for people with advanced cancer). I was kind of surprised at the passion this discussion has prompted. I have always felt very strongly that honestly knowing what to say to someone with a cancer diagnosis is pretty hard and I therefore would absolutely not judge anyone for how they approach it, even if this means awkwardness and avoidance. It touches everyone very differently and mirrors peoples own mortality in someway, which make it doubly difficult to talk. Some people find it very easy, often you will find they have known someone close to them who have had or died from cancer and they navigate it more naturally. Others simply do not know what to say and worry that they may put their foot in it. I judge no one. Humour has always been a strategy I have used to get through difficult times and conversations - so I am the first to have rolled around laughing at comments about the savings I would make from not having to pay for hair treatments (honestly it really did save me quite a bit given I used to colour my hair relatively regularly). I don't mind if people talk about the fight or tell me stories of people who overcame it or ran marathons when they were ill etc etc. I know that these people basically want to share their love and be kind - they want to help make it better in someway and that intention is enough for me. So to judge them for the wrong choice of words achieves nothing. 

The New York Times piece is about what not to say to a cancer patient. Already I do not like the subject matter. But I kept on reading. It is by a Dr Stan Goldberg a prostate cancer patient and communications specialist at San Francisco University. That says it all already. He is a communication specialist which means he is professionally committed to helping people talk about all sorts of things. So it would make sense that when he got cancer he began studying peoples responses. Goodness i would not like to have been one of those people. How to talk cancer to a communications specialist - you would absolutely put your foot in it. He provides a list of dos and don’ts - already sounds complicated. If you didn't instinctively know what to say you would have to memorise a list of dos and don’ts for fear of messing up - best perhaps to avoid the topic completely and then you definitely wouldn't say the wrong thing. 

Among the don’ts were ‘preaching, unsolicited advice or recommendations, judgement and blame, uninvited discussions about prognosis, information about unproven treatmentsand your own feelings of distress’. Well I am sorry Dr Goldberg….I absolutely don't mind preaching, there maybe something useful in it; I welcome all unsolicited advice or recommendations as who knows there may be an amazing nugget in there that could make all the difference;  I am not really sure what he means about judgement or blame - perhaps people wondering what may have contributed to me getting cancer - which is actually quite a sensible line of thought, it is not simply bad luck - it is the result of a series of related factors a good few of which would have something to do with my lifestyle or previous medical decisions - in my case probably using immune suppressants for 2 years, eating badly and running round juggling more than should be humanly sensible - all giving cancer a chance to take hold by weakening my immune response - if I do not consider what might have caused it how might I make changes to try and moderate its progression? Then there are uninvited discussions about prognosis. There do exist figures on average survival depending on stage of disease but these are averages and were calculated from data that are already old - so the real answer is actually who knows and I totally understand why people might want to know as it helps them respond. If the answer is that this is a cancer that is very easy to treat and almost everyone survives, that is a good thing and people can feel happy for you and hopeful, it if is that most people do not survive for many years then they are able to respond equally appropriately and be more actively helpful and present - clear about the severity of the situation. 

What about ‘information about unproven treatments’ - this is a big one! What on earth constitutes an unproved treatment these days? I have come across many treatments for which there is a good level of evidence of benefit but without the standard of evidence required for it to be accepted as a mainstream treatment. A case of not enough evidence but not unproven. The outcome being these are not being made available to people who may benefit from them. Take metformin - a diabetic drug which helps restore the body’s response to naturally produced insulin and has been shown in many studies to have a protective effect in several cancers - why is this not available to advanced cancer patients? So please talk to me about any sort of treatment that may possibly help - I will then do my research and make a judgement as to the whether it is worth pursuing.  And finally talking about my own feelings of distress. Why not? This is the only human thing to do - acknowledge that this must be distressing and have a discussion about it. 

But this is my reaction to this list of don’ts. The discussion on Inspire simply illustrates quite how different we all are. Some people felt very strongly about how other people should or should not react and respond. So maybe some advice is useful and necessary.

A young man call Julian Quick who has a rare form of bone cancer found that some of his friends and family, and work colleagues were unwilling or unable to speak frankly to him about his condition. He was so frustrated that he started to work on a range of what he calls memes - or illustrations of awkward situations people have found themselves in with advice about how to talk cancer in such situations. He worked with AXA PPP  healthcare to help come up with some do’s and don’ts. He found comments about the savings he would make from not having to use of hair products in poor taste, but I think if he spent as much money as I used to at the hair dresser he may well have found these comments less crass. We are all different but there has until now been little advice for either those of us with cancer or those of us who know someone with cancer and these resources begin to fill that gap. They are worth a read and a share. 

The other side of the coin is how to talk to people if you are the one with cancer. I am not usually short of words but there are times when it is hard to know what to say, when I am not actually sure what I am feeling or thinking as these are not constants.  Having to talk to people a work, strangers or even your nearest and dearest at times. AXA PPP healthcare are about to release/have just released a new guide “Let’s Speak Cancer” as well as a video guide.  They are practical and give tips to those with cancer on how to talk about it. I have added the links above but also to the resource section on this site.

In between my work trip to Tanzania and two trips to Germany I managed some very special time away with my husband. He had a work trip that took him to the Maldives (there are worse places to have to go to for work) and so I went with him. We added 3 days on the end of his work trip and it was unforgettable. Our flights went via Singapore so we saw Ned and my sister for a couple of days. If only you could stop time now and then. Or rewind. Let's do that bit again! No - not enjoying this bit - press fast forward. A few pauses here and there would not go amiss. 

I made a  mad dash to Japan (which I thought was a bit closer to Singapore than it is) as I  wanted to visit a clinic which is pioneering a new immunotherapy. Immunotherapy is a term that describes a whole host of approaches and this one is one that Grace Gawler has suggested would be worth investigating. She has referred a number of patients there who are doing very well. So my sister, Cecilia came with me and we spent two nights in Tokyo. I had a consultation and gave blood and some white cells, so they can make up a vaccine for me in the event I decide this is the route to go. It takes 3 weeks to make up the vaccine so when I realised this I thought it would make sense to pay the extra to get there from Singapore so that they have what they need. They have since sent  my blood results back. They map the cancer immune system  in a very clear way and mine, at the time they took the bloods, does not look very impressive. I seem to be very low in natural killer cells in particular.

I am in no doubt that it will not be long before a cancer patient routinely has their bloods tested not only for signs of progression (e.g. cancer makers) and how the body is coping with treatment (white and red cells etc) but how the immune system is doing to inform oncologists about what the next step could be.

There is also an explosion in the use of genetic mapping - mapping the characteristics of the tumour. I have also decided to have this so we know what treatments might work better to help make decisions about next steps. These are not available on the NHS routinely but you can pay for them and some private insurance companies are approving them. This still means they are out of reach for the majority.  If it means it helps us work out how your cancer works and avoids me taking treatments less likely to effective, with all the side effects they bring, then it would be worth it. 

This link from Grace describes it in this way:  

Genomics-based diagnostic testing looks at changes occurring within an individual patient's tumour to identify options not previously considered.  We can now categorise cancer by the underlying gene mutations that drive its growth; instead of naming it by location, e.g. breast, liver, prostate, brain, cancers, etc. With genomic testing doctors have a better chance of finding gene changes causing or associated with your cancer. This information enables doctors to target your cancer in highly effective ways. Tailoring your treatments to your tumours individual characteristics. 

I am not sure that our health system is yet ready for this explosion of information - in fact I know that it is not. But one day it may be able to offer genetic testing to all (as happens to most in the USA) and match people with treatments. We still live in a country with the worst cancer survival in Europe and the tragic loss of AA Gill before the publication of his article in the Sunday Times magazine today highlights the lack of access to new drugs within the NHS. He had a type of lung cancer which had particularly good response rates to an immunotherapy called nivolumab. In the USA and much of Europe, and within the private sector here this would have been his first line treatment. On the NHS it was not available to him. Nivolumab may not have saved his life but he may have had a very good chance of more precious time with his family. As the rest of the world steps up to the revolution in cancer therapies those of us with advanced cancers have little choice but to keep up with research on new treatments and do what it takes to access them when the evidence suggests they are likely to give you the best chance at success. 


The Beast is Back, Professor Vogl and Anne Boleyn

No nose stud - first time in nearly 30 years 

No nose stud - first time in nearly 30 years 

I have been concerned that the cancer was on the move for a while, ever since one of my liver enzymes (GGT - a marker of inflammation) started to rise. Over the summer the rise was slow, but it has been steady. The bloods taken after my ovaries were removed had it at 116 (normal is under 40) - which pretty well confirmed I was going to have to take action soon. I was determined to go to Tanzania and had a letter from my oncologist for the insurance which simply stated that hehad examined me in September and that at that point I was fit and able to travel to ‘Africa’. Which at that point was true. But things change. Before even going to Tanzania I had arranged (with help from Grace Gawler who runs a foundation to support people navigate cancer options) to go to Professor Vogl in Frankfurt. 

Prof Vogl is an interventionist oncologist (aren’t they all?) and he is an expert at stabilising tumours and reducing tumour load in major organs (I am sure he describes himself very differently but this is my understanding). In the old days if the cancer had reached the liver the approach was more or less, bad luck, sorry there is nothing much we can do. Nowadays they are working out ways to try and keep you alive longer, with less toxic treatments so you have some quality of life - but they still approach different cancers differently. If you have primary liver cancer a very normal treatment is something called TACE - or transarterial chemoembolisation. Which to you or I means - chemotherapy injected via the hepatic artery to the blood supply to the tumours, and then embolisation means something like - and block it off so the chemo can't escape and the blood supply to the tumours is cut/reduced. I have attached a leaflet that describes it much better. For those with primary liver cancers a good 66% respond well and the tumours can be stabilised or pushed back for 10-14 months and if they are in good enough health then they can have it again and again even. This really can extend life for this group and can keep them going until they can get a liver transplant. 

For those of use for whom the cancer is secondary i.e. it originated somewhere else - in my case the breast, TACE does not seem to be considered in the UK. Presumably because they reckon that the cancer is already out the bag and so it is money down the drain. But for those of us for whom the cancer has remained (touch wood this is still the case) in the liver since secondary diagnosis it would seem sensible to more directly target the chemo to the tumours there (if they are under control they can't kill me) and in doing so reduce the impact on the healthy cells in the rest of my body. I knew that my options in the UK when it started progressing consisted of either an IV chemotherapy or a hormone approach, probably the IV chemo however, as once it is on the move in the liver you need to get it under control pretty sharpish and then try aromatase inhibitors (hormone treatment for oestrogen positive cancer). The IV chemo reaches the liver via the portal vein but the tumours in the liver are usually fed by the hepatic artery. SO if you inject the chemo directly via the hepatic artery you can use lower levels of chemo with much greater effect. And 

Prof. Vogl is top of his game. He not only does this for livers but lungs and other places. He also has a number of other approaches to reduce tumour load. In my case the tumours are spread over both lobes of the liver which rules out some approaches. Eg - resection - were I to have one or two clear tumours the liver could potentially be resected - i.e. the bit with the tumours cut out. As livers are so resilient (got to look at the positives) the liver will regrow. I had investigated this last time my liver got bad, but the treatments then worked so well I did not need to follow it through. This time it was the obvious next step. Only one part of the plan, as I do still need some systemic treatment as the cancer, even if not yet visible, is still around my body and so I will need some treatment to keep this also at bay. Having the tumours in the liver got under control (this is the plan) may then mean I can start on a aromatase inhibitor, perhaps a low dose chemo or an immunotherapy. 

So plan get tumours under control is underway.  This means money. About £5000 a visit (euro 3900 plus flights and hotel for me and someone to accompany me) a go. I will need 2-4 treatments of TACE because they can only do one lobe at a time and unless they get a spectacular response first go they are likely to need at least one follow up treatment. The treatments are every 4 weeks. 

We (my longest best friend came with me) arrived in Frankfurt (flights to Frankfurt are not cheap) and stayed in a hotel relatively close to the Frankfurt University Hospital. We reported at 7.30am in time for an 8am appointment. I had been warned that Prof Vogl has a slightly distracted manner so this, which I can confirm is true, did not bother me. The University Hospital is on an enormous site and there was quite a factory production line feel about the process. The Department clearly deal with hundreds of patients a week which I suspect affects their capacity to make any one feel individual. This did not mean they were unkind, more robotic in their smiles and responses. 

After a brief meeting with Prof. Vogl and payment for the procedure I was sent to have an MRI of my liver. This involved being escorted down corridors to a line of numbered doors, or cubicles as it turned out, each with a door to enter, a locker for personal belongings and another door on the other side which then led to a corridor to the MRI room. I entered door 11, removed all my clothes and jewellry. This included my nose ring, as MRI’s have magnets which would attract metal. 

I have not removed my nose ring since the year I had my nose pierced. I had it pierced aged 18 in 1989 (I was ahead of the crowd) in Bangalore South India during my gap year before going to university. I chose a local nose piercer, not wanting a more techno piercing with a gun. I reckoned that with so many millions of indian women having nose rings the traditional approach would be safest. This involved a sharp curved piece of metal which was inserted manually.  I remember, in my attempt to protect myself from infection, pulling out a little bottle of surgical spirit that I travelled with and requesting that the old man (he probably was not that old but at 18 over 40 looked pretty old), clean his hands and the equipment with it. I was travelling with a friend who was also going to have her nose pierced, but was less convinced so I had offered to go first. I knew if I made too much fuss she may back out so held in the screech of pain that should have accompanied the actual piercing (although I could not hold back the spontaneous tearsfrom the pain that filled my eyes). Forcibly smiling after the event I reassured my friend that it wasn’t that bad really. She certainly did not hold in the screech of pain which was loud and came with much swearing. But it was over fast and we went away with rather throbbing noses and gold plated studs. Being sensitive to most metals mine became red and aggravated so I went to have stud of real gold and a tiny diamond made up. I reckoned that I would not easily be able to buy nose studs in the UK in those days. I have worn this nose stud every single day since then. I could never work out how to take it out and feared that if I tried I would either break it, lose it or not know how to put it back in. A number of times during my life I have been challenged to remove it. Once I turned up for a waitressing job in my early 20s at the Queens Club in London, and they asked me to remove it, which I refused to do and was then told to leave. But my nose stud meant too much for me compared with that one off waiting job. When having operations and CT scans I have been asked to remove it, but when I have said I cannot they have simply covered it with a plaster. I had always thought I would take it out by the age of 30 (which then seemed ancient) as I considered it might stop people taking me seriously. My thirtieth birthday passed and I kept it in. Soon after I was interviewed for a job at Brighton and Hove Council. My children were very young and I really needed a local job to help me manage the children and enable me to finish my PhD (which meant needing money to pay huge child care costs). I remember seriously considering if this was the time I had always imagined, when I needed to grow up and take it out in case it affected my chances of getting the job. But I couldn’t bring myself to do it and walked into the interview room. I was at that time 7 months pregnant with William which was probably far more likely to affect my chances of being employed than a nose stud. And there, there sat the woman who would become my boss, herself with a nose stud. We do live in Brighton, so this should not have been such a surprise, but even then nose studs were far less common than nowadays. 

Below - me in my hospital gown and no nose stud and me at 18 in India the year I had my nose pierced 

Anyway, this was my first MRI scan and clearly the risk of the magnets attracting my nose stud gave me very little choice. I simply had to remove it. I had seconds to do so and was all in a fluster ready to mourn the loss of this little friend in the event I had to break it to get it out, but was surprised that it was a relatively straightforward affair. What was far more likely was that I would then lose it as it is really very tiny and I had no special case to put it in. I put on the standard, do up at the back hospital gown and came out the other side of the cubicle, locked the door shut and waited to be escorted to the MRI scan. An MRI is also a polo like round shape but the hole is much smaller so when they wheel you in it feels very claustrophobic as everything is so close. It makes a loud clanging sound when it starts working. It took about 10 minutes in this position. I am not claustrophobic but it is difficult not to feel anxiousin this position so I started my distraction techniques. Strangely what came into my head was Anne Boleyn. I read a book last year about her last weeks before she was beheaded and remember considering how she might have kept it together knowing the certainty of death was so close. So I began to talk to myself in my head, think of how many people, like Anne Boleyn have had to face far worse. What about those locked away, throughout the ages, knowing they would be tortured, that no one would hear or come and save them and no one would care when tossed cold and in pain, back to their cells. Very dramatic I know but it worked. It made any anxiety about either my broader situation or that 10 minutes in a small tube a lot easier to deal with.

I was then directed to a theatre. I walked there through corridors, including workman as there was quite a bit of building work going on, holding my bag of clothes in one hand with the other grasping desperately at the hospital gown, trying to protect my modesty from behind. The little bows that canbe used to tie it up to keep it together are pretty difficult to do up given they are behind you, so essentially my bottom would most definitely have been visible had I not grasped the edges of the gown together. In the theatre there was a cubicle for my bag of clothes and the nurses indicated I should get onto the bed where they started preparing me. Smiles and politeness but I still felt rather like just another poor soul. This did not bother me, I would prefer the fit as many poor souls in this factory line efficiently than waste any more time than is necessary being too friendly. There were about 2 or 3 nurses fiddling with the machine, inserting a cannula in my arm and hooking me up to an IV of fluids, anti nausea medication and morphine. A very beautiful doctor came to check it all. I had not known quite was going to happen and was nervous. Not so much about the procedure but about the fact that Prof. Vogl would now know the extent of the spread in my liver and I could not decide if I would ask him what he could see or even if I would try and look on the screens that were visible to help him guide his work. I had wondered about the pain of the procedure also. The unexpected morphine floated through me and took away all my anxiety. It was rather lovely and I have always thought, as I did when I had a drugs prior to my generalanaesthetic a few weeks ago for the ovary removal procedure, that as long as these drugs exist perhaps the end will not be so bad. Not only can they protect you from pain but it is the mental anguish I would want to be most protected from. I decided I would neither ask him what he could see nor try and look. I worried either may result in some information that I would not be able to manage and which would haunt me daily until I returned to see if and how effective the procedure had been. I also felt that Prof. Vogl would not be a man to mince his words and preferred to have Grace as the interpreter. 

I lay there for a while with nurses being busy around me and eventually Prof Vogl arrived, all gowned up. I had had antiseptic smothered over my groin area and a material cover laid over me which covered my whole body bar a window to the groin. I just looked up to the ceiling and waited as Prof Vogl injected some local anaesthetic and soon began his job, inserting a line up my femoral artery to my hepatic artery. I could not tell really what was going on but he eventually asked me if I could feel anything, for a couple of seconds I could not and then suddenly there was a whoosh of what felt like cold liquid racing around the shape of my liver - clearly he had injected the chemo. It was uncomfortable and quite a shocking sensation but quick. I am not entirely sure what he was doing next but assume this involved the embolism part of TACE - i.e. closing off the blood stream to the tumours so that they are not only poisoned by the chemo but starved of their blood supply. He had chosen to do the right lobe of the liver, which was clearly in a worse state, although my left lobe is the one I feel the most as it physically protrudes from the centre of my upper abdomen between the ribs. Perhaps it is because the right lobe is so much larger that it was key to get this under control as the liver can work relatively well even with quite a bit of it covered in tumours. The whole procedure, bar preparation and finishing up took probably less than 10 minutes. 

In a later debrief with Grace (who goes through the cases with Prof Vogl , she knows and understands him and so can help interpret as well as know to ask the right questions), she said that I have substantial tumour load around the central area of the liver that is close to my stomach and aorta and we need to get this under control. Horrible words, substantial tumour load. But I am trusting that Prof Vogl is the best person in the world to get this under control if anyone can. I will have to wait a month for my next appointment at which time they will do the left lobe (unless clear that the right lobe needs more attention). 

The Line in through the hepatic artery - yuch 

The Line in through the hepatic artery - yuch 

After the procedure Prof Vogl left with few words and the nurses finished getting me ready to move. They transferred me to a trolley bed and wheeled me to a ward for 3-4 hour observation. I was not to move for this time to ensure that the femoral artery was safe and I did not start bleeding. I was still under the influence of morphine so lay there drifting in and out of sleep until my best friend came up from the waiting room to distract me and help get things like water and my book into a position that I could reach given I was unable to move.  My blood pressure, temperature and pulse were taken regularly and the time went by quite fast. I was then told I could get up and leave. I had read an account from another woman who was treated by Prof Vogl of what she had called the Vogl shuffle, which I realised I now had. I basically could not lift the right leg up for 2-3 days so climbing stairs and getting into cars was a bit awkward. It was also the discomfort from where the line had gone in that bothered me most that night. 

We made our way down to Prof. Vogl’s office again where they assumed I had had the post procedure CT scan. We got slightly lost in the system and hung around too long before we finally got a call for the CT scan - which took seconds. It was immediately sent to Prof Vogl who I then saw for a couple of minutes as he checked all looked ok after the procedure and I was safe to go and said he would decide what to do next when he sees the scan next time. And that was that. We made our way in a taxi to the hotel and spent the rest of the time, until the next day early afternoon,   when we made our way to the airport. With all the lying around time I was able to get quite a bit of work done. It is efficient time - I can't move, I can’t be distracted and work keeps me engaged. 

The following days and weeks were far worse than I had anticipated. I think I had thought that because the chemo was targeted I would feel bad for may a day or two and bounce back - but in reality I felt ok for a couple of days, but very tired and then I started feeling worse and worse. I investigated TACE more and read that this does happen. The slow release of the chemo and leakage into the system. There is also adelay for the impact of the embolism to be felt. The liver was clearly angry and felt more swollen, or at least more ‘alive’. I felt wobbly, tired, needed to rest much more than normal, out of breath - just not great for more than 2 weeks and now a good 3 plus weeks after I am finally feeling more myself. Only to prepare for round two. At least this time I will be more prepared and in the intervening time I am trying to avoid thinking about what the results might tell us about how effective it has been. It certainly feels more settled on the right, not on the left however.  

I continue with my oral chemo, which I also discussed with Prof. Vogl and I have now written to my oncologist in the UK to explain my rationale for this action. My aim is to stabilise the tumours in the liver using what I consider is the most effective and targeted way to do so, which if successful will give me the opportunity I hope to start on a new hormone therapy. I continue to investigate immunotherapies and have been examining something called AIET (Autogulous immune enhancement therapy). This is available in Japan. Just as with HIV where combination therapy became to key to controlling what is now a chronic disease it feels as if we are moving to a place where this could be the key for cancer also. Combine therapies to trick the cancer and keep ahead of its mutations to keep this disease chronic not fatal. But we are so early and new approaches are bursting up all around - how the health systems will navigate their way through these to determine which are the most effective combinations for which cancers will require time and some bold thinking and risk taking. In the meantime people like me, and there are many around the world, are taking this challenge into our own hands. Money is the main obstacle but mothers who want to be alive for their children are a pretty determined lot and this makes us very resourceful. Whatever it takes to stay alive. In doing so we work with experts like Grace to navigate the old, new and even newer treatments in our quest to stay alive. In my experience each Doctor is limited by the breadth of their expertise so as science advances they cannot either keep up with all the developments, or make risky choices on behalf of their patients if they cannot be sure of the outcomes/ risks and so they stick within what they can prescribe and advise. There have been no new treatments (I lie eribulin has finally been added to the list of chemotherapies available to people with advanced breast cancer in the UK at last) - but apart from that there have been no new treatments for breast cancer for far too long in the NHS. There are treatments in the US now, routine genetic mapping of tumours which are simply so far away from being available to women in the UK that it feels criminal. The costs I know are prohibitive but with Pharmaceutical companies being even more profitable than oil companies somewhere there has to be room for negotiating prices for treatments which might actually mean they can be used to do what they were designed to do - extend and improve quality of life.

The danger is that while doctors or scientists know more and more about less and less until they eventually know everything about nothing I need to avoid ending up knowing a little about more and more until I eventually know nothing about everything.

Adapted from not sure who

The week before my visit to Professor Vogl I flew to Tanzania. I had been holding my breath that I would in fact be able to go. There were many bits of a jigsaw that needed to be in place. I needed a letter from my oncologist to say I was fit at the point of examination, for the insurance company. My appointment with him happened conveniently just before the signs of progression became very obvious. There were various hurdles to fix the meeting for the week I knew I could travel. I do not want to advertise my health issues. And I needed to stay well enough. There was quite a bit at stake had I needed to pull out, not least I would appear entirely unreliable and this important meeting that had required a number of key people to be available would have had to be cancelled with the implications of that. I was suspicious things were getting worse both after the blood test after my ovary operation which showed the inflammation marker in my liver rising to a not insignificant level and then worse, I began to feel my liver. It was at this point that I fixed my visit to Vogl for just days after my return. I was not going to panic and pull out - two fingers to the cancer I thought. How dare it disrupt me in this way. And so, with a slowly but notably swelling liver I went ahead with my plans. 

Anyone who travels around Africa will know that it is one of the least well served parts of the world in terms of air travel. There are few direct flights anywhere and most routes require you to go via one of the 3 main hubs - Nairobi, Addis Ababa or Johannesburg. When I used to need to visit Malawi and Tanzania in the same visit, despite the two countries being direct neighbours the only way to fly there was to take a plane from Lilongwe in Malawi to Nairobi and from there take another plane go back on yourself to Dar es Salaam. In fact it is even more bonkers than that as the Lilongwe Nairobi route stopped in Zambia on the way - and if you look at a map of Africa you will see that Zambia is in fact in the opposite direction to Nairobi meaning you flew out of your way and then back again at least doubling the time on the plane. It would take me a whole day to make this relatively short distance. This visit to Dar es Salaam I took an Ethiopian Air flight via Addis Ababa. It was due to leave at 9pm on the Saturday, I would have a four hour stop over in Addis and then arrive in Dar around early afternoon which would get me to my hotel by around 5 or 6pm given the time it usually takes to queue and get a visa on arrival. My first work meeting was at 8am on the Monday. 

We sat waiting to embark. 8.45pm and nothing. 9pm. Nothing. The flight was being not being managed by Ethiopia air staff but Star Alliance which meant that when anyone inquired what the delay was they did not seem to have the slightest clue. 10pm. Nothing. Passengers started getting a bit restless and feisty with more and more going to the desk to find out what was going on. Finally there was an announcement. The aircraft had a technical fault and engineers were trying to sort it out. Hmmm. I hoped very much it was the lights in the toilet. In fact it turned out, allegedly, to be a special screw that was missing. They needed to find out if their colleagues at British Airways had one they could use. And so we waited to find out. No. They did not and the only place they could now source this screw was from Frankfurt which meant the plane was grounded and they had to put all 300 plus of us up in airport hotels, which we finally got to around half midnight after working our way backwards through the terminal, out through immigration to pile on to waiting buses. The hold luggage was to be kept on the plane over night, so any thought of baling would be impossible - although the next day some people did which delayed us further as their bags were located and removed. In the end the flight left at 1pm the next day. A day flight was in fact much easier, I had work to finish and this would have been hard on a night flight and I would have had little time at the hotel before my first meeting had I arrived when expected. At this point I had no clue at what time I would in fact arrive in Tanzania and managed to contact the travel agent to be told I had been booked on a night flight from Addis. In practice this meant that when we landed in Addis, rather than a four hour wait a bus took those of us travelling to Dar from one plane direct to another. Rather efficient I thought - and I finally arrived in Dar in the early morning of Monday. After the visa queue I was not in bed until 3.30am. I had little sleep and wondered what all this was telling me. Travelling can be stressful. Should I be putting myself through this. I was tired but not stressed, except perhaps about my liver which was causing me discomfort. Livers do not have nerve endings so the discomfort was from the actual bulk of it pressing on my stomach and a hernia I have had since a child above my tummy button which has never given me any trouble until the last year. The work was relatively smooth. There was one slight blip when I went for a 5 minute lie down during one lunch break as I was really exhausted and needed to just close my eyes and have some time out. The next thing I knew my Tanzanian work colleague was tapping politely on my door. I had fallen deep asleep for 25 minutes. As I was the facilitator for the meeting it wasn't as if I could slip in the back door and pretend I had been doing some unavoidable really important work which had unfortunately way laid me. So I walked boldly through the front door apologising that I had been doing some unavoidable really important work which had unfortunately way laid me, looking as confident and together as I could. 

Apart from the painful traffic jams in Dar on the way to the airport the return journey was more or less straight forward. A state of emergency had been declared in Ethiopia, but you would not know it waiting for 6 hours at the airport for my connecting flight home. I felt sad however. I was more tired than normal when I arrived home. I cannot pretend all is the same. I was such a physically robust person and now I feel so feeble sometimes. Accepting that life is different and will not ever look the same again is hard. Accepting the uncertainty, the changing role at work given my inability to be as physically present as I was before my diagnosis is hard. I remind myself of how lucky I am and counsel myself that this is my path now, there is no point looking back just make the most of now. Usually I am quite good at this but the trip to Dar was a concrete reminder. I used to do trips like that all the time, perhaps it was this that so starkly highlighted my reality. It was not just a normal work trip. Nothing is normal anymore. 

MOre about TACE

MOre about TACE

Surgical menopause - On the Front Line

Last Thursday I had a bilateral salpingo oorpholrectomy - which means removal of both ovaries and fallopian tubes to you and me. My cancer is fed by oestrogen and by removing the ovaries it makes me very much post menopausal and a pretty constant stream of oestrogen is removed as a result of this procedure. My cancer is extremely oestrogen receptive so I have been looking forward to just getting them out. Finding a time to have the operation during a period of stability was necessary. It was a bit hit and miss as I wondered if I would still be stable enough to go ahead. By having them removed the range of hormonal therapies I can consider increases as many of them require you to be post menopausal. Last year I was on Letrozole, which also requires this but instead of surgically induced menopause I had chemically induced menopause through weekly horse sized injections in my abdomen (zoladex). As well as hating them because they just hurt it also meant that for about 3 or 4 days after the injections I was particularly tired and flat. 

I have had the date of the operation in my diary for a while. 22nd September. As the date approached I made sure I would have people around me to help for the first few days. Ella came back from London, Uni does not start till next week and Rupert was not travelling with work. I cleared my diary for two weeks as I was not sure how long I would be physically out of action and was very busy up to the date as I squeezed in as much as I could before I was grounded. 

The operation was scheduled for the afternoon and was to an outpatient procedure. It involves key hole surgery, a hole through the belly button and two small holes above the hip bone area. But in the end I stayed over night as the operation started later than planned and there was no way I would be walking before it got dark. 

I had not given the operation much thought before the day, at least not consciously, beyond the practicalities. This was also a treatment in itself and I was happy that was necessary. When the day arrived I began to consider the symbolism of it for the first time. These ovaries have been pretty good to me. They gave me (with a bit of help) my 4 beautiful children. I certainly don’t need them for childbearing and the logic to remove them was good. But on the day I did start to feel a bit maudlin. I said goodbye to Rupert who had bought me to the bed I would recover in and then walked with a nurse to the operating theatre. Rather it was the room before the theatre where they put you to sleep. By this time I was wearing one of those delicious do up the back hospital gowns. I climbed on to the bed and loosened it so they could access the parts they needed easily and they covered me with a blanket. The anaethetist stuck something in my right arm through which the various drugs and fluids could go (hitting a blood vessel on the way and needing to re-site). I had been worried about my carpal tunnel but he said that the drugs would in fact help it - I can't remember how - something about relaxing the blood vessels (I might have made that up). As all this was happening the reality of what was about to happen and simply my situation and probably lots more related started bubbling up and I could feel my eyes stinging. I was about to burst into tears but just in timethey gave me the dreamy pre-med and the next thing I knew I was in recovery.

Apparently one of the anaesthetic drugs makes it feel as if time has stood still, so that whatever you were thinking about when you went to sleep you wake up thinking about. In my case this meant that as I slowly became aware of sounds and light, I couldn't really feel my body, I was like a floating head, but I could think and I just started crying. I was wearing an oxygen mask which meant that as I hiccoughed I breathed in huge amounts of oxygen. This was a strangely lovely feeling. I was not really conscious of why I was crying it just felt like a huge release. Tears were rolling down my cheeks. I could hear the voice of a nurse, like an angel, whispering that it was OK, that general anaesthetic can make people feel emotional. I was clearly not the first to wake up crying. I did not want Rupert to see any tears and mumbled through the mask to ask if she could wipe my eyes and make sure I did not look like I had been crying. Slowly my body came into focus and I was aware of some discomfort in my abdomen area but nothing dramatic. As I became more lucid they removed the oxygen and opened my eyes. There were other people on either side of me also in recovery but I had the same nurse keeping an eye on me, taking 5 minute observations for a period. And then I found my voice and we started chatting. I think I would call it more like verbal diaorrhea - we talked about motherhood, childcare, work life balance with kids and more. One of those mother to mother conversations that connect otherwise strangers so powerfully. 

I was wheeled back to my bed where Rupert was. Ella, Tom and Will came to visit briefly. Although I was lying very still, with white anti DVT stockings I didn't feel as bad as I thought I might, I slept pretty well and came home the next morning.  By then I walked to the car, very slowly mind, but I walked. 

It has been just over a week since then and apart from the first 2-3 days when I continued to walk around like a bent old woman (still want to be one of those), I watched a whole series on Netfliks (Stranger Things - brilliant - set in the 1980s - a time warp for me - no mobiles, no internet, no computers, it’s like a mix between a darker version of ET and Strange Encounters of the Third Kind - honestly it is a great watch). Physically I have recovered pretty well and am walking normally. The wounds were incredible - no dressings at all just glue. Very disconcerting to see my belly button stuck together - I hate my tummy button being touched so the idea that it has been more than just touched - it has been drilled into and light and camera equipment stuffed through it very disconcerting. It remains stuck together and the dried glue is almost off (very tempting to pick at it) - hoping I still have a tummy button and wonder what it will look like. Maybe it will look better than when I went in? It shows no signs of returning to its previous state and I have to admit looks the better for it. So perhaps I have inadvertently had plastic surgery to my tummy button.

The other scars are tiny. These are where they pull the unnecessary body parts out. I was never very good at biology or anatomy but I have some idea of how things fit together but not I suppose their relative size. Gauging by the size of the holes they were pretty small or at least able to squeeze through a small opening. 

The part of the process I had underestimated was not the physical healing of the wounds etc but the fact that this would mean a plummet in any remaining ovary related oestrogen. My treatments over the past 5 years have all chipped away at my oestrogen levels but this would be the final big push. Ella read somewhere that it takes about 3 days after the operation for the last of the oestrogen from surrounding tissue to leave the body so by day 4 my body was crying out ‘oestrogen! oestrogen! where the fuck are you?’. In practice this has meant some whole body hot flushes and the feeling occasionally as if I am having some kind of internal electric shock. The most unwelcome symptom in the very early days was a sudden feeling of deep sadness. I simply cried. Not just a little but a lot and frequently. As my mobility was restricted it was hard to get moving and do something to distract myself but even if I could I couldn’t unpack what was making me so sad. I know you might imagine what might be but I am really quite a happy soul despite what is going on and nothing had changed much from a week ago when I felt perfectly cheery. I don’t mind my family knowing if I am down when I really am down and even if I do end up having a cry in front of them occasionally, that is probably quite healthy. But I really do not want to be terminally miserable and cast a heavy depression over their lives. I want them to be surrounded by laughter and optimism most of the time. So uncontrollable sadness was not good. I clocked this was related to my operation and thought I had better read a bit more about it and see if there were any useful strategies to help. 

Well- first of all in my search I noticed that information about menopause generally seems to be written on a back drop of sickly pink. Why? It is breast cancer awareness month this month and I am surrounded by lots of sickly pink balloons. (by the way I get very annoyed when people with breast cancer get annoyed about the methods people without it use to raise awareness of the issue and try and raise funds and support for it - there was a recent spat where people shaving their heads in support of breast cancer were attacked by people with cancer who more or less said they had no idea what it was really like and they found it offensive - well I think that anyone who wants to do anything to raise awareness and support should be thanked - not lectured to as the intention is fundamentally good). Back to sickly pink balloons - why could they not have chosen bright happy pink ones? A matter of taste. For menopause however I do not like the pink at all. This dislike was aggravated by a very informative blog on surgical menopause. Pages and pages of it. Can you imagine - a whole blog on surgical menopause - and this was not one that interspersed the blog with light tit bits about every day stuff it was entirely focused on the many and varied consequences of surgical menopause. And it was all pink. 

These even Look like they could be escaping ovaries 

These even Look like they could be escaping ovaries 

According to this blog I am likely to suffer some or all of the following. My bones are going to get brittle. My skin will become dry and thin and my wrinkles will become more pronounced. I will lose my hair - or some of it as it becomes thin and more grey (I am not yet grey bar the odd one or two but this clearly will not last long). I will get hot flushes at night and at random times and sweat lots. My vagina is going to shrivel and become as dry as the gobi desert, prone to cuts and chaffing. I will suffer inexplicable mood swings and may suddenly feel very sad. I will become irritable and will be unable to concentrate for long periods. And my memory will deteriorate so I won't remember anything anyway. The answer, according to these essays (pages per symptom explaining exactly how the lack of oestrogen results in the symptom so you are in no doubt that it will happen to you) is HRT. Which of course people like me cannot use anyway - so that’s not very helpful. In fact, according to this blog HRT is so clearly the only way to avoid the above that I am absolutely certain the blogger is either a pharmaceutical company rep or someone paid by a pharmaceutical company to blog about the terrors of surgically induced menopause and the big saviour HRT. That would explain the very well organised blog site and choice of decoration. Not a typo in sight. Perfect grammar. No hanging sentences or long garbled phrases that you might expect from a real person :) .  Call it a blog and we won’t realise it is information being fed to us via the pharmaceutical industry. On the other hand perhaps it has been written by a genuine person, who was terribly affected by it and for whom HRT was her saviour and she felt compelled to tell the world. If so - I am sorry for being so doubting but could you please add some more information for people who can’t take HRT and please be less depressing - no wonder we end up irritable and moody. 

Who would employ a menopausal woman if they read all of that. I went through in my head how many people I knew who I was sure were either going through it or had already gone through it (admittedly not having had ovaries removed) and decided that there are really quite a few competent, healthy, happy and capable women around. Don't we have a female British PM and Germany has a female Chancellor and then there is Hilary - they can we hope concentrate for more than a few minutes. Compare them with Trump Kim Jong Putin and Mugabe. Unpredictable? Moody? What is the male equivalent? 

That is not to belittle the actual symptoms that I am or might experience and those that my fellow surgical menopausers may have. I may well become more forgetful (if this is actually possible) and my skin may dry and shrivel and I may feel sad sometimes but I will have to work out how to manage that - a bit more suduko and the writing of lists and post it notes; luxurious non toxic face and body creams and some good comedy; love and laughter. 

I do not really have any photographs to share this time as I thought snaps of my tummy button were not desirable. A snap of me crying uncontrollably? No. The only one vaguely suitable is of me as a baby in my pram. I have a look, I am sure I have mentioned before, which Rupert says I give when I disapprove or dislike something, a smell, an opinion and obnoxious comment (the content of a blog I do not like) and it apparently looks like I am smelling camel pee. Well I think this picture shows how long ago I developed this disapproving expression. 

I have been loved and looked after by my family and am preparing myself for what may be coming down the road. My liver bloods have continued to go up (the wrong direction) so I am thinking that sooner or later I am going to have to change course. I am trying to stay calm and philosophical and have some ideas of next steps if I need to do something differently. I have started GcMaf. I inject 0.5ml every 1-2 days and I take oral colostrum (from Japan). Let’s see if this supports what I am doing - it is steady as she goes for the moment - ready for an about turn if needs be.

During all of this I have continued with my day job (no point lying around watching TV series unless very good reason) and I will be travelling to Tanzania next week. I am working to support the Tanzanian Government introduce accreditation to health care facilities as part of a strategy to improve the quality of health care as part of German Development Aid. They do not know about my health situation, and I don't want them to or they might slightly lose confidence in me (!). This is quite a tricky path to tread. Having advanced cancer means life is very unpredictable and you cannot plan too far ahead ever. I wondered if I would be able to do this but for the moment, despite rising liver bloods I feel well, my oncologist was happy to write a letter saying at the point of examination I was fit and able to travel there (an insurance type letter) and this fits within our workplan. So I feel very grateful. Last year I thought that was the end. It is not the end!

Life, Love and Truly Scrumptious


It is 30 degrees and I am sitting in the Botanic Garden Cafe in Gottingen. The flowers are fading,  a powerful visual reminder that summer is ending, despite the heat today. I am here for the treatment I continue to receive here, usually monthly but this time given the summer holidays, the gap was longer - about 7 weeks. I left booking somewhere to stayfar too long. Goodness knows what ishappening in Gottingen this week but I could not find a single airbnb or hotel in the central area and so am about half an hours walk away in the Hotel Astoria. Room 13 at the furthest end of a very long, yellow corridor on the first floor. The room overlooks a big red Mini-Mart and Toys R Us sign in bright lights, a road system and a car park. The room last night was stifling but with my eye patches and earplugs I slept ok. Before I came I had my routine blood test at home, which shows a continued rise in one of my liver markers. The others look OK but none are going down. I asked to delay the scan as I feel very well and have no obvious symptoms. Scan’s are the cancer sufferers nightmare. Their very prospect ties your stomach in knots as the results can mean your immediate future can change overnight and you temporary calm is destabilised. You need to go through the possible scenarios to simply prepare yourself, not only for bad news but what it might mean. Fear in a consultation can make you forget any reason and perspective so to pass through the fear in advance and consider what might happen and what you might want to ask when you go and get the results is a good way to prepare. But there is a limit to how many times a person (and their loved ones) can go through this so it was good to delay it. I am concerned that the liver bloods are indicating that the cancer is active again and I need to decide what to do about it. 

Next week I will have an operation to remove my ovaries and fallopian tubes - a ‘bilateral salpingo oorpholrectomy’. It is key hole surgery, which I think always gives a false impression that it is almost as straight forward as cutting your toe nails. In practice it involves pumping your abdomen with gas (which takes a good while to go down - ouch - and I have yet to work out how the gas is actually released - or is this too obvious??). They have to cut through some muscle and then cut the bits out and stop the bleeding with a bit of stitching somewhere along the way. It involves a general anaesthetic. I have had wildly differing descriptions ranging from people who almost went back to work a couple of days later to others feeling they had been kicked by a horse and it taking weeks before they felt themselves again. I would of course like it to be the former but I am not quite as robust as I used to be. Staying busy is a great strategy for good mental health in my view and so the prospect of being physically confined in anyway is not good. But I need this operation because firstly my cancer is strongly estrogen receptive and this will reduce the amount of estrogen in my body available to it and second it also opens up other hormonal therapies that require you to be post menopausal. Last year I was having routine Zometa monthly, a horse sized (possibly exaggeration but that is my view) injection in my stomach which I hated and threw me into 3 days of post injection symptoms. Using this type of approach is time limited and it is better at this stage to get on and get my ovaries out. There is a trial of a new hormonal drug I may be eligible for if I have confirmed progression,  but only if I am post menopausal. 

Then there are the after affects of surgically induced menopause. Hot flushes, reduction in bone density, dryness, skin thinning, hair thinning - basically turning into an old lady sooner than you might otherwise as far as I can see. But I have really been bombarded since my first diagnosis and have only variously experienced the above but think that for the most part I will not be dramatically hit as I have already had so many treatments to reduce my estrogen. Fingers crossed. 

While I am on a bit of a roll about my physical ailments (I do so hate to focus on the failing state of my body as really I have been running daily, juicing and feel great) - but I am going to mention my wrists. Over the summer I have developed terrible carpal tunnel syndrome. I was susceptible to it before my cancer and experienced it during pregnancy, but this is something else. My wrists are visibly swollen and there is fluid pooling in the backs of my hands. My right hand is worse than my left but both fizz and are numb on and off throughout the day. Anything that requires a pinching movement, even driving the car aggravates it and I have to stop or move my hands to relieve it. At night it wakes me 3-4 times, and almost always around 5am. Only sitting up and hanging my hands by my sides and shaking them at this time will relieve them. By the time I get out of bed in the morning I have absolutely no grip and it takes movement to get them going again - but even then I am unable to form fist as I used to. I am not sure exactly what has aggravated it but it is without doubt the result of the various treatments I am on and have been on. A lack of estrogen for starters can affect this - but I think it may also be immune system treatments. The bottom line is it is not going to go away and will most probably only get worse so I am on a mission to find a resolution. This is likely to be a carpal tunnel release surgery. Basically the main nerves that run through your arm to your hand go through a tunnel (the carpal tunnel) which is not very big. Any swelling or damage can put pressure squeezing the nerves and starving the hand. So what do you do? You ‘release’ the pressure through a surgical cut or two in the right place. Margaret Thatcher apparently had the surgery - not sure that recommends it - but she was a pretty busy woman.

The fizzing and numbness and lack of grip are bearable but completely aggravating. My knitting (my very untalented attempt at it which gives me such joy) has almost come to a halt as has my colouringand writing for any time is also very uncomfortable. I can, thank goodness, still type.  The bit that worries me most is that if I do not sort it out and I were to find myself - for the sake of being very dramatic - on my death bed - rather than soaking in love, attention and morphine I will be driven mad by the fizzing and discomfort made worse by lack of movement from my near to death lying down pose. I am not sure this jumps me to the top of any surgery queue - which by the way is as long as a very long thing - ‘Stage IV women, incurable, with carpal tunnel syndrome’ - they will probably slip me to the back of the list and hope nature is quicker than their waiting list. So I am investigating how to get it done privately. Things should not work like this but when you are where I am you have to take control. This will mean, among things, finding a time when I am in a stable state, not recovering from abdominal surgery, stable and with help to do the most basic tasks as if I have both wrists done at once I will be handless for a while. I have been spoilt over the summer as for most of it I have had almost all the children and still have Ella who continues to be my daily companion. 

All I wanted before the summer holidays started was to be well so we could spend time together as a family. We had taken 4 whole weeks to spend in France. My wider family joined and over August we simply had beautiful weather and such happy, happy times. We had A’level results and some GCSE results and Tom left us early to travel around Europe with his friends. We also said goodbye to Ned. Ned is spending a term in Singapore with my younger sister and her family. This was a plan of mine for a while.

After my experience in March when I wondered if I would see Xmas I have been facing up to my fears so they do not derail me. One of these is the prospect of Ned growing up without a mother. Of course I feel the same for all my children, as a mother is a mother regardless how old you are, but he is still a child. The others are already the formed people they will be and so nearly all into adulthood. For Ned I had a vision of me not being there and his brothers and sister being off at University, working or travelling and only Rupert and he at home. Rupert will have to continue to work even if he were to take time off or rearrange how he works, but for Ned’s life so far he has been surrounded by noise and bustle. The idea of Ned alone in the house after school or at weekends is unbearable. He also needs a mother figure. My sister lives in Singapore and has 4 children of her own, but they are younger than Ned with the oldest only a school year behind, so he fits well given their age ranges and now has experience of being the eldest. He and William visited her over Xmas and he built a nice relationship with my sister. So on compassionate grounds his current school is holding his place for a term while he spends a term there. For him this was an exciting prospect, he couldn’t wait. The school there were very good and accepted him and he now has a Singapore Student Pass. We facetime daily. I miss him. We all miss him. The house is strangely quiet. We can tell he is not aroundas apart from his obvious absence biscuit packets stay closed, there are no strange inventions or fire experiments and the number of experimental cake making has fallen to zero. But he is having such an amazing experience. A new school (he is at the international school), lessons by ipad (what happened to pen and paper?), new friends, noodles, rabbits, a cat, hamsters and his cousins. In many ways it is like sending him to boarding school but not like in my day where I did not see my parents for a whole 3 and 1/2 months at a time, didn’t speak to them as there was no facetime and certainly no email. He is with a loving family and will be home for the holidays. But the family works differently when he is not here as it does when the others leave for whatever reason, travel, university. It is the universal reality of parenthood - children grow up and the best you can do is prepare them so you do not need you. In this case I am preparing him a bit sooner and for a possibility more profound than most children have to contemplate. (below is a photo of Ned at Heathrow about to travel solo/assisted to Singapore and with 3 of his cousins on their first day of school)

As if 4 weeks in France was not spoiling enough (we did actually work while we were there!) but Rupert and I ended the summer with a few days in Florida for our 21st wedding anniversary (we did not celebrate 20 years last year). Florida would not normally be our choice of a romantic break for such an anniversary but really we were there to visit Rupert’s beautiful Aunt Sally Ann, his only living relative of that generation having lost his Mum and Dad in 2 years. Sally Ann (Sally Ann Howes) is better known as Truly Scrumptious from Chitty Chitty Bang Bang. This beautiful British actress is now 86 and remains a force of nature. She is one of Britain’s treasures but like all of us,  life will not go on for ever. I have been very close to her since we first met when I was 23. She adores her two nephews and has played a key role in both their lives. When I was diagnosed last year one of the consequences, I thought at the time, was that I would never see her again. So with my relative health we were determined to go and visit her and her husband Douglas. 

When I first met Rupert at 23, we fell in love and were engaged in a very short space of time, so while I felt I knew his very core there were many parts of his life I was still to learn about. He had told me he was from a family of actors and musicians and that he and his brother had broken the tradition. At some point he had said his Aunt was in Chitty Chitty Bang Bang. I imagined some backing dancer in one of the sweet factory scenes and thought no more about it. Meanwhile my family were all very curious as to who this man was, he was 8 years older than me. We barely knew each other and were not connected in anyway before we met. In the December before we met (1993 - we met one month later in January 1994) I had spent Xmas with my family. After one rather drunken family meal we had settled to watch the annual showing of Chitty, a favourite in our house. A conversation had ensued. Who was the actress? It wasn’t Julie Andrews. So as the credits appeared (in those days you could not pause) we all crawled forward to be closer to the box to read the names better, but they sped past us and we missed it. A few months later Rupert and I were walking through Camden when we passed a cafe called Truly Scrumptious. As we passed he said ‘Look, they’ve named it after Aunty’. I stopped dead in my tracks. ‘You mean your Aunt is Truly Scrumptious’. Yes, he said, he had told me she was in Chitty. Heart racing, I found the nearest red phone box (again no mobiles in those days) and called my mother. ‘Mum, Mum! Guess who Rupert’s Aunt is?”. And after that all the little whispers wondering who this man was ended as it was now clear. He was Truly Scrumptious’ nephew. What more did anyone need to know? 

Since that time she has added some glamour to all our lives. She has sung to 4 Presidents. She met Marilyn Monroe at President Kennedy’s famous birthday were Marilyn sang ‘Happy Birthday Mr President’ at which they arranged to meet for coffee until Marilyn’s untimely death. The event itself had been choreographed by Sally Ann’s then husband Richard Adler. But that is the thing about death, it comes to us all and Sally Ann is nearing her time. She has had the most remarkable life but cannot escape the discomforts of old age, the sadness of losing all your friends and the losing of your independence. We had a beautiful few days. 

21 years on this September

21 years on this September

While we were there we spentsome of the time in a nice hotel near their apartment. We had decided that for such a big anniversary, and given my situation we needed to take the ‘sea view’ principle - do it while you can. We had in fact seen the prices and decided that partial sea view was good enough. Brexit added to the pain as had we paid when we first booked it would have been a good third cheaper. But as it was hurricane season and the hotel was under half full so they had up graded us to a full sea view. We slept with the window open and could hear the whoosh whoosh of the sea. One of the nights we had a disagreement in the middle of the night. Rupert thought the wind was a bit strong and the noise was keeping him awake. I was quite happy, enjoying the bluster, but he shut the window. In the morning we had texts from family - were we OK? Had the hurricane hit us? As it was we were in fact on the other side of Florida from the hurricane but we had clearly, unknowingly, experienced the tail of it. 

At breakfast the first morning I was suitably excited when I saw there was a ‘Raw Food bar’. On closer inspection it consisted of a few pieces of watercress and a plate of some raw spinach. There was also some interesting looking grass (see photo). Perhaps this was tall wheatgrass, I thought and looked around for some sissors or other implement to cut it with. But there were none, which made me think. Is it there to eat or for decoration? Why would you have grass on a raw food bar that was not for eating? So I surrepticiously ripped a few strands off and stuffed them in my mouth. Grass - it was definitely grass. Maybe this was a raw food thang in the United States. I thought I had better ask someone and as cooly as I could, making out I was simply interested and had not intended to actually eat any of it, I asked one of the servers, who confirmed it was just there for decoration. I was not the only person to have asked apparently - which makes me wonder why they hadn’t rethought their decoration strategy. And I slunk away with some spinach and watercress on my plate. 

One thing America has which we do not is Whole Foods. I know there are more stores here now but not in Brighton. Whole Foods for me (known there by many as Whole Pay as you can spend all your money in your excitement) is a cathedral to organic food and non toxic, ethically sourced food, supplements and other products. We have Infinity Foods which is pretty lucky but Infinity has a long way to go if it is to match Whole Foods quality and choice. There was a store near where we were staying and I made Rupert return there almost daily to get my organic juice and vegetables and more. The choice was outstanding as was the quality of the fresh food. 

We are home now. All is different with no Ned and Tom and Ella no longer at school. William was the only one up and in uniform on the first day at school. Every year I have taken the traditional first day of the school year photo. This year it consisted of William. I feel rather in limbo as I have no definite proof the cancer is on the move but in the past the liver marker that is rising has always been the first sign of this happening, so I am getting myself ready just in case. Ovaries out first. 

I have added 2 new treatments into my mix since getting back. One is chinese medicine and the other is GcMaf. I had had acupuncture before but not regularly and this time I am going to a fully trained Chinese doctor and starting a course of acupuncture and cupping (to release toxins, strengthen immunity and stimulate blood among other things). I have found someone I consider very good and after my first session with him I had a temperature during the night, which I interpreted as a good sign, my immune system had been given a jolt. The GcMaf is more controversial. I have been researching it for a very long time and heard all sorts of views. I am convinced there is something in it and have finally tracked down a supplier I think is most credible, with published papers on line. It is a Japanese family of clinics Saisei Clinics, which offers a whole range of non toxic approaches and immunotherapies (http://www.saisei-mirai.or.jp/immunotherapy/index_eng.html). They had been recommended to me before but Japan is not practical. Although I may change my mind if I believe they have something to offer I cannot find elsewhere. GcMaf or GC Protein derived Macrophage Activating Factor is ‘a highly effective macrophage activating therapy, used to stimulate the immune system and activate macrophages so that they can destroy cancer cells and other abnormal cells in the body’. I am not going to sell it, as I have not really started it yet as my consignment is stuck in customs in Coventry, but I have read enough that makes me think it is worth adding to the mix. I will report more as I go.

According to the Japanese Clinic it can be used as part of an integrative approach. Other suppliers insist it will not work if you are on chemotherapy and that you need to be on a ketogenic diet. I do agree that it has a greater chance of working if you are not on chemotherapy and that a ketogenic diet is ideal but chemotherapy has a role, it can reduce the cancer load which can then give the GcMaf a more manageable task. On the ketogenic diet, I am more convinced about the role of sugar and carbohydrates but I find it impossible to eat ketogenic (almost no sugar, good fats, some protein and vegetables mainly). So I am going for low carbs at the moments, good fats, vegetable and protein but I have some fruits. I have eaten more meat over the summer, but not much and with vegetables not carbs (except for Friday market rosti chicken and fresh bread from the local french market which was a weekly treat). 

I continue to write my stories for my family. My appreciation for writers has soared as I realise that despite a desire to write and things to say it is very difficult to find the time to get on with it. Here is something I have written about where I will go one day. Where we will all go one day for that matter. 

Where will Mum go when she dies?

Well, that is a very good question and one Mummy thinks about a lot. Some people believe in heaven, a beautiful and peaceful place. Others believe we are reincarnated, that means we come back as another creature or person. Mummy thinks it must be somewhere in the middle. When you die she thinks it must feel like just falling into a deep, deep sleep but never waking up. Instead we find a kind of peace coming back to life as our cells are reabsorbed by nature. When she dies she will be the wood pigeon. Every time you hear it softly coo it will be Mummy talking to you, telling you she loves you and is watching over you. She will be telling you there is nothing to worry about and that she wants you to love life and be happy. She will also be the breeze*. The breeze that gently blows the trees making the branches bend and the leaves rustle. The breeze that brushes your face as you walk and ruffles your hair when you run. The breeze that wraps itself around you so that you know Mummy is there. 

Everywhere you look you will see other Mummies keeping watch over their children. The bees buzzing, a dog barking, water running, cows lowing. They are the rain that trickles down window panes and drips off eye lashes, the clouds, always watchful, playing games in the sky, sometimes making shapes for you to guess what they are, other times covering the earth like a thick cotton wool blanket. Some Mummies are the snow falling silently, tickling your cheeks and freezing your toes. Others the waves on the sea shore, always present, always watching, talking to their children, sometimes, playing with them as they race and jump and whoop, catch me if you can, she will be shouting, ‘I’m coming to get you’ as she whooshes up the shore snapping at their ankles. You can find most Mummies in the light of a candle, flickering and dancing, watchingcarefully as you stare into the flame. Some Mummies are the blanket that covers you at night, protecting you, keeping you warm, keeping you safe. They are the heather on the moors, the daffodils in the spring, the leaves falling off the trees. They are everywhere. But your Mummy will be the wood pigeon and the breeze and she will follow you all through your life. When you hear her or feel her listen very carefully. She loves you.  

*because every little breeze whispers Louise

I lost one of my new cancer friends over the summer. That day I saw a baby turtle struggling on the beach until a wave came and washed it into the sea to and to freedom and I imagined it was Graham, free now to explore the world with no pain. 


Making the most of now

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

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

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

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

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

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

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

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

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

Death of a Hamster

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

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

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

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

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

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

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

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

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

A reprieve

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

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

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

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

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

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

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


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

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

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

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

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

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

Charting the way ahead

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

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

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

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

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

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

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

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

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

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


"Don't Worry, Be Happy"

Here's a little song I wrote

You might want to sing it note for note

Don't worry, be happy

In every life we have some trouble

When you worry you make it double

Don't worry, be happy

…….when you worry your face will frown

And that will bring everybody down

So don't worry, be happy

Don't worry, be happy now

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

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

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

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

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

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

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

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



A Wobble


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

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

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

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

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

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

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

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

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

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

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

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

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


The Clock of Life

The clock of life is wound but once.

And no man has the power

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

Now is the only time that you own.

Live, love, toil with a will.

Place no faith in tomorrow.

For the clock may then be still. 

Robert H Smith


How selfhood begins with the walking away

And love is proved in the letting go

Cecil Day Lewis

Tread softly for you tread on my dreams



I would not have been given the power to dream

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


For we which now behold these present days

Have eyes to wonder but lack the tongues to praise


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

Martin Luther King 


…whose mother is history,

rival of time, storehouse of great deeds,

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

warning to the future.

Don Quixote, Cervantes


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

Broweet 1950

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


The pleasures of Friendship

The pleasures of friendship are exquiste

How pleasant to go to a friend on a visit!

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

And the hours and minutes like minutes pass

Stevie Smith

April 25th

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

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

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

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

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

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

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

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

Budwig in the bath, old photos and 1985

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

Renne Caisse 

Renne Caisse 

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

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

Benefits of Rebounding

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 St Michael's

 St Michael's

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

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

Cold at Hamburg Station

Cold at Hamburg Station

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

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

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

Root canals, amalgam fillings, detox, uncertainty and belief

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

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


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

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

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

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

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

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

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

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

From Bill Henderson’s book…

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

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

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

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

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

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

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

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

Essential 1: Attitude

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

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

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

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

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

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

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