Saturday, 29 December 2012

Patient Power

What a fabulously lovely Christmas I've just had - surrounded by the most of the people I love best in the world - my amazing dad, my lovely sister, WM and my three gorgeous children. So I was up to my eyes in chemo side-effects, beyond exhausted and barely able to stand, but I still managed to cook the whole Christmas 4-course meal with trimmings galore, even if I wasn't able to eat it myself. There were so many presents for the kids that opening them all took all day, with Toby starting at 3am when he discovered Santa Claus had already delivered a sack load of presents on the end of his bed. 

The presents weren't just for the children. I was really touched by the thoughtfulness that had gone into choosing presents especially for me. One friend had taken the trouble to text WM to let him know that BHS were selling a "Coke Float Kit", another gave me a Mint Hot Chocolate Kit, including the mini-marshallows to go on the top, Mary Poppins gave me a really gorgeous mug covered with photos of Toby - every photo exudes his unique joy an exuberance, and another friend gave me some Guatemalan Worry People - 7 tiny little hand-made dolls that you tell your worries to and then sleep with them under your pillow - the worries then melt away overnight, apparently. 

All told, the whole day just seemed to be packed full of love.  There were no rows or arguments, everyone was delightful, helpful and just perfect all day, and to be honest, that feeling of love has lasted all week so far.  Although I packed cancer away in the back of my mind for the week, I think one of the many avantages of having cancer is that it makes me far more aware of the nice moments, more appreciative and much more in tune to counting my blessings, of which there are so many. 

Overshadowing the whole week, though, has been the chemotherapy and how pants it has made me feel. I try to tune it out, and to pretend it's fairly nothing, but it's there and I can't always ignore it.The inability to eat, or to drink, the sometimes excrutiating bone pain, the stomach upsets that sometimes have kept me in the bathroom for hours on end, even during the night, the numbness in my hands and feet which make me clumsy as well as very unsteady when walking, the total, awful exhaustion - not really sleep related, more to do with exhaustion seeping into every bone and muscle - they all combine and make even standing out of a chair seem like a Herculian effort. 

Normally I don't just think I'm going to come through this cancer to live a long, happy and healthy several more decades, I absolutely know it. I'm normally irritatingly, enthusiastically positive about every last cancer cell being obliterated into oblivion. Chemo weeks are the exception. When the chemo is doing it's brilliant job of hunting down and fatally poisoning any stray cancer cell that has the audicity to think it can hang around in my body, somehow all the doubts and fears come flooding into my consciousness, and I spend a week or so convinced I'll soon be pushing up the daisies. This week has been no exception. I try to hide it, and thought I was good at that, but my extremely insightful daughter noticed. "Mum," she said,  "People always say how positive you are, don't they?  Well I can see that you're not at all. What you are is cheerful about it, and people think cheerful and positive are the same things, but they're not. I never realised til now what a negative pessimist you really are." Oops, I'd better try harder in future.

Chemo is over, the whole six cycles, so positivity will come back with a vengeance in the next few days. However, now it's over, I've got to seriously get back on the wagon of eating a counter-cancer diet and adopting a counter-cancer lifestyle. The past four months on chemo have been an ordeal, and at times eating anything at all for days on end has been impossible. Getting through it was the priority, and in the knowledge that the chemo was fighting a mighty battle against any residual cancer cells, I let myself off the hook. Now that I won't have the chemo back-up, I've got to re-establish all the stuff I tried so hard to do during the summer. Green tea by the gallon, exercising daily, spoon-fuls of tumeric, garlic and ginger, shed loads of fruit and veg, and cutting out all processed food. Why do things that are bad for you taste so good? I'm currently into a salami-and-salad-cream-sandwich-on-very-while-bread phase - a glorious cacophony of processed food at it's best.

I feel that my body is like the World War  battlefields. Everytime I eat something good, I can see the enemy cancer cells being chased away by my strengthened immune-system army at it's best, but every time I pop a chocolate or a biscuit into my mouth, I can see the swaggering, smug cancer cell army taking more than a pop at my precious immune system. It's a constant fight between good and bad, and this is the fight of my life and I really want to win it. So why do I seem to have a natural affinity with the enemy? When I eat a biscuit or a salami and salad-cream sandwich, I'm being a traitor to the cause, and I might as well just open the borders and let the enemy sail right on up triumphantly through my whole bloodstream.  This whole constant battle plays out in my head nearly all the time, and it's not just about the food I'm eating. It's the thoughts I'm thinking, the exercise I'm not doing,  and the rest and relaxation I'm not taking.So give it a week or so, and I'll have to write a battle strategy and this time, I'll have to stick to it. This cancer needs all the big-guns from all directions - both what the Generals from the medical profession can throw at it and what this little Home Guard can do on my own. "Who do you think you are kidding, Mr Cancer?" - that's my theme tune now. 

 Patient Power comes in all sorts of guises, both in taking ownership and doing whatever you can to augment the best in modern medicine in terms of lifestyle an diet, and also in finding a way to have a meaningful dialogue with your medical team about aspects of your care that you are not comfortable about.

 If you've been reading my writings for a while, you'll know that one of my biggest challenges with Cancer has been finding a way to cope with my extreme needle-phobia. I've decided early on to come out of the closet and admit this shameful secret to my Oncology Team. Almost without exception, they have been so supportive about it, but it was clear that, whilst being very kind and sympathetic, they were puzzled by it and its causes. I researched into the topic a bit, and although the Internet has a fair amount of material written about needle-phobia, I couldn't find a single word written by a needle-phobic patient, all the articles appear to be written by health professionals. So I wrote a blog-post about it, probably the hardest and most personal piece of writing I've ever done, and probably the first piece of writing on the subject from a patient perspective. It's been warmly received by many of the medical profession, and now I've been invited to speak at a very prestigious conference about it in London next June. I'm thrilled about this on a lot of different levels, not least because I'll get a nice posh day out in a top London Hotel,  but also because it looks like needle-phobia is being taken seriously, and I'm being given an opportunity to raise awareness and maybe even begin to influence medical culture and practice in some small way.   I feel very honoured, but also aware that I have a responsibility to do the best possible job in explaining and advocating  on behalf of the many thousands of fellow-sufferers, many of whom are probably too ashamed to own up to it.

If you know any health professionals who might want to read it what I wrote about this subject, it's in the list on the side with "needle-phobia" as part of the title. Please feel free to pass it on. 

So a very busy year ahead already. The play of this blog, "Coke Floats and Chemo". still needs to be written in time to rehearse it for it's debut at the Brighton Fringe in May. Then speaking at the conference in June. In between times, I'll be fighting my cancer on the beaches, getting very better, and planning a bucket list for my next 30 years. It will be a very good year - the writing's on the wall already. If I don't write again this year, all the very best for a lovely start to 2013.  My heart wants a party on New Year's Eve. My head says "Don't be ridiculous, you're exhausted!". I'll let you know what I actually decide, and my good friends may yet get a last minute party phone-call ....... !


  1. Yvonne, you are such an inspiration! You've somehow managed to juggle your major health challenges and constant chemo wipe-out, with caring for your beautiful children and their special needs and running a happy, well-functioning home...but you haven't stopped there! You've conjured up the time and creativity to write a very engaging and educational blog about your experiences, run healing by laughter workshops, fundraise for
    Mencap and engage the medical world in dialogue about needle phobia! That's an incredible list of accomplishments for 2012!!! I can't wait to see what magic you have up your sleeve for 2013!!!
    Love, hugs and best wishes, as always xox
    Sharon K. Ottawa

  2. I know you'll be beyond thrilled about the way our local hospital just treated Tom a few weeks ago. Under sedation and with EMLA cream, we attempted a blood draw (the sedation was for a CT, and we thought it would be ideal to get blood). He was beyond distressed, especially as the vein was not cooperating. It was not an urgent test, and the nurse was amazing. She stopped, and made arrangements for Tom to come into hozzie and try giggle gas (entinox). By the way, Tom has no recollection of the attempt - he cam to find me the next day wondering why he had a needle hole in his arm!. He has had a go with giggle agas, and we now have an appointment for a blodd test next week - with ametop cream (to dilate not constrict the veins), and lots of giggle gas. Really empowering Tom, and acknowledging the trauma that needles cause...