Coke Floats & Chemo: Being a cancer patient

Coke Floats & Chemo: Being a cancer patient: Today I was a patient, and I'm just not any good at it. I hate it, loathe it and although outwardly I'm good at giving the right imp...

Being a cancer patient

Today I was a patient, and I'm just not any good at it. I hate it, loathe it and although outwardly I'm good at giving the right impression of stoical gratitude and forebearance, inside I'm desperately trying to prevent my true feelings of stroppy petulance leaking out all over the place. 

Mostly I can deal with it, tune it out, get on with it and accept the whole package of being a patient with a lot more graciousness than I felt today, but sometimes, just sometimes, it really gets to me and I want to stop playing this game, this lottery game of fear and uncertainty called cancer. Then I remember that this is just the way it is, there won't ever be a way to get off this particular merry-go-round, and life is a bitch. 

I'm normally much better at tackling things than I am today, I don't normally do low, I don't usually let things get to me like this. It wasn't anyone's fault. The hospital staff were perfectly pleasant, in fact the Consultant I saw was completely lovely, and even gave me some really encouraging news. It was me. Today I struggled to do positive, happy and upbeat, I failed dismally at looking on the bright side or finding something absurd about the whole thing to laugh at, I just didn't do the whole patient thing well at all. 

It was a test day rather than a treatment day. I was with the clinician who conducted the test for nearly an hour, in very close, bodily contact as they have to dig deeply into my flesh with a probe and drag it to various points, each time digging harder until I wanted to scream with the pain. Maybe I'm just a wuss. I was never told her name, even though she knew mine. I had to undress, and she couldn't find the surgical gowns to at least give a pretence to modesty and dignity. I was half-naked, revealing the ugly disfiguring shark-bite scar where a breast used to be, while she rummaged in cupboards looking for the missing gowns. That hideous twelve-inch scar that scooped all the flesh out right down to the breastbone and rib-cage that even now, nearly two years after surgery, I can't face in the mirror without dissolving into flood of tears. 

Eventually I was handed a gown, but by then it was too late, I would have to spend the next nearly-an-hour swallowing hard to stop those wretched tears from revealing my true vulnerability. I had to lie, stock-still, on the bed, all the time trying to tune out the joint pain that wanted to tear me apart. Hips, knees, back, elbows, wrists, knuckles, they all wanted a pain party today. My surgery has left a legacy of gnawing pins and needles and numbness in both arms and fingers, which was made worse by the permanent nerve damage caused by chemotherapy. Lying still for what seems like forever means the pins and needles fizzle away like crazy until it feels I'm on fire. I began to think I would never be able to move again.  Maybe I've just got a low pain threshold. 

Every now and again, I was asked to take in a slow deep breath and hold it. It would be so helpful if clinicians would remember to tell you when it's OK to breathe out again, but they often forget. Today I thought I was going to suffocate several times over. There were curtains around the bed, but they didn't quite meet in the middle, and directly opposite there were staff lockers, and it must have been staff break time, with me and my scar providing the peep-show entertainment. 

Normally, I manage to keep a perspective on things, normally I just remind myself how lucky and blessed I am to live in a country with free health-care, and at a time when the treatments on offer will keep me alive for longer than has ever been possible before. Not today. Today I was pissed-off, resentful, miserable and withdrawn. 

Being a patient is so much more than just turning up and letting them do whatever has to be done in terms of tests and treatments. The psychology is complex, and there is a whole set of assumptions and expectations that you feel compelled to conform to, even when you really don't want to. I'm a patient, therefore I'm expected to be weak, passive, willing to co-operate, grateful, gracious and submissive. As a patient it's really hard to hold on to your identity, personality, dignity and privacy. It feels like I'm reduced to a hospital number who has to be processed. It really doesn't matter how kind, compassionate, caring and sensitive the staff are, it's almost impossible to be "me" when I'm with them. 

It's the same in the outside world. Having cancer, particularly the incurable variety that I've got, inevitably sets you apart from everyone else. It's so easy to become defined by cancer, to let who you really are to be squashed and crushed by other people's reactions. I've spent the past nearly two years fighting against these stereotypes, and I've done it fairly successfully so that people know that the "me" is still alive and kicking and living life to the fullest. 

I've kept a blog, starred in the Stage Play of my cancer story, written a book, spoken at conferences, run Laughter Yoga sessions, and kept countless other interests and activities going strong, all at least partly so I remain much more than just a person with cancer. People sometimes tell me I'm marvellous, inspiring, courageous and brave, but I so am not any of those things. I just don't want to be written off, side-lined, ignored, depersonalised or reduced to a pathetic shadow of a person. I want to be engaged, dancing, laughing, involved, enmeshed in life, because that way, I'll stay alive in the only way that matters. I don't want half a life, I don't want to be passive and poorly and get smothered in sympathy. I want to be me.

Sometimes, just sometimes, the facade drops and I'm left exposed, so exposed that even I have to see what's really going on. I have cancer. It's incurable. Hospital tests and treatments are now, and will always be an integral part of my lifestyle until the day I die. 

Cancer has robbed me of energy, cancer brings me low when I look at the To Do list and the dozens of little tasks that have been left undone around the house for months, and the admin mountain and the washing and the keeping the kitchen and bathroom clean, and I know I just can't do it all any more. The exhaustion. The bone-tiredness that descends like a cloud and I fight it like hell. The running on empty. Cancer has taken so much and will continue to want more and more. I will not let it take away the "me" though. I will not be crushed under the weight of this awful disease.

I will not be patient, even though I have to learn to be a patient. I doubt I'll ever be a good one though.

If you’d like to buy a copy of Yvonne Newbold's book,  “The Special Parent’s Handbook”,  here’s the link to the Amazon Page:

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Adventures with breast cancer: Patient Power

Adventures with breast cancer: 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...

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 ....... !