Thursday, 11 October 2012

Does the fear of cancer ever really leave you?

Is it wrong to look at some people and feel simmering resentment that they are squandering their health by smoking, eating too much (and the wrong things), drinking too much, not exercising and so on? And is it wrong to think "But I ate healthily, exercised, didn't drink often, didn't smoke, looked after myself and I still got cancer"?

Well, if it's wrong, I still find myself doing it. I'm not wishing cancer on anyone else - why would I want anyone else to experience the stomach-sinking dread that a cancer diagnosis brings, the painful and harrowing physical side-effects of treatment and the emotional freefall that cancer gifts to you? But oh, sometimes  I just want to shake people and say "Don't you realise the risks you are taking with your health?".

I used to feel like this a lot when I was first diagnosed and probably for about a year after, but the feelings have abated - until yesterday, when a friend phoned to tell me that she has just been diagnosed with cancer for the second time. This is a woman who has never smoked or drunk and who has looked after her health as best she can. She was diagnosed with breast cancer five years ago. endured the treatment and was heading towards her five year clear milestone when wallop! she gets a diagnosis of skin cancer. Skin cancer, in a woman who never sunbathes and has always been cautious about exposing her skin to the burning effects of the sun. The sheer injustice of it feels overwhelming for me, so what it must be like for her, I can only guess. This friend was incredibly helpful and supportive to me last year when I was facing my dx and treatment, with all the uncertainties, fears and emotions that it brought me - she was able to speak not only as someone who has dealt with cancer, but also as a radiographer, with professional experience of giving the treatment. I feel such anger that she is having to go through the seemingly endless rounds of hospital visits, appointments, blood tests, scans, whatever treatment is considered best for her. Yes, she is feisty and will face this diagnosis with courage, humour and determination, but the sense of sheer unfairness is hard to shake off. It's her battle, but in a way it's my battle too, and it's the battle of everyone who has had a cancer dx. We bind together like some unregulated, unchartered army, shaking our helpless fists at this evil invader and giving up our bodies, our health and our autonomy to become the battleground on which the fight is played out between the medics and cancer.

I ask again - once you have had a cancer dx, do you ever really forget about it? Or is it there, lurking, making itself comfortable in the deepest recesses of your psyche, looking for that little chink in your equilibrium to squeeze itself back to the front of your consciousness, so that it once more becomes something that covers everything you do, everything you say, everything you feel with a patina of anxiety and fear?

Does this make me more anxious about my check-up next week? Yes, but I am trying to remain sensible and calm, reminding myself that each cancer is different, my cancer was in a totally different part of the body and a totally different kind, that my general health is good and other comforting, pat-yourself-down phrases. In the meantime, I just have to carry on as normal - much the same as my friend is trying to do.

Friday, 5 October 2012

The constants in my life

 Flashback - September 2011. I am one week post-radiotherapy and sinking to a new low, both physically and mentally. I can't eat without being sick, my neck is bleeding, my mouth is painfully dry, I feel sore, I am exhausted. What better thing to do, then, than go to a black tie dinner? It sounds mad, but this was no ordinary black tie dinner - this was the CIPFA South East Summer School, an event so dear to my heart and where I have made some of my closest friends, so not going wasn't an option, really. I blogged abbut it at the time, about how bittersweet it was to be there, feeling lousy, looking at my worst (although gratifyingly skinny, for the first time in my adult life!) but surrounded by the love and support of some wonderful people.

Come back now to 2012 and this year's Summer School, where I was able to play a full part - I had energy, I had enthusiasm and I felt like a different person (albeit not quite as skinny as last year!). I can't describe just how wonderful it felt to be part of it all again, not sitting as an invalid, unable to do anything, not even to eat. I might not have stayed up as late as I would have BC, but I'm still recovering fitness and stamina, so that ought to improve. For me, one of the major things is that I didn't feel as self-conscious about my face as I did last year, or even a few months or weeks ago. I confess to a touch of nervousness on the eve and morning of my departure for Summer School, but - as ever - my lovely husband told me I look great and that there is no need to worry. Of course, he was right. I genuinely don't look nearly as obviously different as I used to (although it's noticeable when I talk or smile an open-mouthed smile) and, in any case, I was going to be with friends. Most of the delegates at Summer School were people I knew and any newcomers would hopefully be as accepting as my friends were.

And so it proved to be. We had chosen Facial Palsy UK (the new, about-to-be-launched charity I am involved with, providing support to people with facial palsy) as the charity we would support during summer school. This is a practice we introduced a few years ago and it has allowed us to support a range of charities to the tune of several hundred pounds each year. I made a brief speech about the charity and why it was so important for people like me, with our wonky faces, difficulties in eating, drinking and speaking and our inability often to express emotions and take a full part in social interaction. I feel so honoured that, over the course of two days and with a small delegate group (the recession bites again!), we managed to raise over £400 - a magnificent amount, and I am so grateful for the generosity of our delegates.

One of the challenges for a fledgling charity is that no one really knows about it, so we have to publicise it at every opportunity. A couple of months ago, I emailed the Chief Executive of the hospital where I received my diagnosis, had my surgery, physio, speech therapy, eye operation etc etc to say how impressed I was with the treatment and care I had. To cut a long story short, I was invited to be interviewed for a BBC South East local affairs programme, to be broadcast either later this month or in October. After exchanging emails with the journalist, we arranged a date for me to be interviewed at the hospital. Who knows how much of what I said will end up on the cutting-room floor, but I managed to get in some mentions of Facial Palsy UK, which I hope will help raise the profile of our charity. For those of you who can receive BBC South East, the programme is called "Inside Out" and the feature is around cancer care in the area.

Neil and I had 9 days in Spain, at the end of September. We had intended to do lots of walking, climbing and generally be very active, but in the end, we did far less than expected and just relaxed instead. I know, hold the front page! We did still manage a 36 km bike ride and a couple of long walks, but mostly we pottered around, enjoying the pueblos blancos, the tapas and the manana approach to life. We ended with two days in Seville, arriving just as they had their first rain following 7 months of dry sunshine. It wasn't just any old rain, it was torrential rain - we had to go back to our (very charming, quaint) hotel twice on the first day to change out of our sodden clothes and warm up in the bath and shower! Still, we managed to see most of what we wanted to see, including a flamenco show. Ever been to one? The dancing was what I expected, but the singing - oh my! That was a bit unexpected..very guttural, no obvious link between the beat of the guitarist, the singer and the hand-clapping and very LOUD - which I suppose it has to be to be heard over the stamping feet of the dancers! We really enjoyed it, after the initial surprise at the vocal element.

And so back to Britain and more least now we are well and truly in autumn now, I can wear boots at every opportunity. This, to my mind, is one of the few good things about living in a temperate climate where the seasons change. I get to wear boots.

This week has included an appointment with my speech therapist. She has given me permission to stop zapping - yay! No more electrodes and shocks for an hour every evening. Instead, I have more massage exercises and a specific exercise to help me with my "whistle" - pursing the lips. I mentioned to the therapist that I hated not being able to kiss properly - when your mouth doesn't purse properly (that sounds a bit weird!), effectively you become a passive participant when someone kisses your mouth. Also, it is harder to spit (I'm not a gobber, but you do need to spit when you clean your teeth and I find it quite difficult!) and, as I discovered at Summer School, I can't blow bubbles with a bubble wand either (it was all in the cause of our group presentation, honest!). It's a reminder that things still aren't back to how they were BC and they're never going to be. However, I have to continue to work at what I can to get maximum improvement.

And so to today, and my first visit to the gym in several weeks. I really need to start being more disciplined again about my exercise regime, especially as the weather is now of the kind that is likely to pull my mood down. I am not good with rainy, overcast, dull days and it looks as if we are in for quite a lot of them. I was disappointed not to get a place in the ballot for the London Marathon next year (again. I never have any luck in the ballot) as I was hoping to run for Facial Palsy UK. I think I will support instead, although some people are trying to persuade me to run Brighton marathon instead. I think I might pass on that one!

Check-up at the Marsden in two weeks and already I can feel some slight anxiety, which I know will increase as I get closer to my appointment. Three months feels like an awful long time for things to go wrong, but I need to try and be more trusting in the medics and their judgement that I don't need to be seen more often. I do trust them, but these niggling, anxious little voices just keep whispering in my ear and it's not always easy to silence them.

To end on a happy note - last night, I attended the book launch for "Grace Under Pressure", an account of how running helped Sophie Walker deal with her daughter's Aspergers and what it's like to live with a child with Aspergers, with all the challenges, difficulties and delights it brings. I was Sophie's babysitter when I was a student and her parents and younger sisters were both there (I babysat one of her sisters too) - and, in one of those weird coincidences, I ended up working for the man who is now Sophie's husband a few years ago, without knowing anything about their relationship until it emerged during a conversation worthy of a Ionesco play!. It was great to meet up with her family again. Although I saw her parents, Dave and Lesley, a couple of years ago, we hadn't met since my somewhat tumultuous 2011 and I hadn't seen her younger sister, Cathy, for nigh on 30 years, although we are in touch through Facebook. I felt a warm glow, talking to them all (and no, don't blame it on the wine, because I was drinking water!).

Family, friends, exercise - three constants in my life.