Wednesday 24 October 2012

That Didn't Happen

I was diagnosed with breast cancer sixteen years ago, when my sons were aged just 11 and 9. As a single parent, and as someone who had grown up in the care system without any contact to my birth family, I was terrified I would die and that my children would literally be left all alone in the world.

That didn’t happen.

Five years ago, when my sons were barely over the threshold of adulthood, I was diagnosed with secondary cancer and I was afraid I would die and that I would not be around to see them complete their education, start work and relationships and move into their own homes.

That didn’t happen either.

But a couple of weeks ago, I was given the news by my consultant oncologist, who I know so well by now that we’re practically friends, that the tumour in my neck had grown. I was shocked - literally speechless, which as anyone who knows me will testify, is almost unheard of. The medication (Faslodex) which had been injected into both my buttocks every month for two-and-a-half years wasn’t working any more. I needed to switch to something else (Tamoxifen) immediately. I didn’t manage to ask any questions, except the ‘big’ one: what did this development mean for my overall prognosis? The consultant was doggedly optimistic. She reckons I’ll still be trudging to the hospital long after she’s retired.

I’m a little more cautious. Almost exactly a year ago, I’d been told I was in stable remission and I feel like I let myself be lulled into a false sense of security. Why else had I stopped taking the long list of supplementary and herbal medicines I’d taken for years? Why else had I sauntered into the clinic alone to get the CT and bone scan results? I go to hospital so often - sometimes for other, less pressing health problems -  that I always go alone unless I’m waiting for test and/or scan results. I’m heartily sick of the place myself - excuse the awful pun -  so I save up the favours I ask of family and friends.

I loathe the combat metaphors that are so often applied to cancer, with its so-called brave, battle-scarred survivors and fallen soldiers. I don’t want to battle through life. I want to live it. And I’ve been ‘living with cancer’ for so long, I suppose I should be used to it. To a certain extent, I am. I have learned to pace myself and I choose my activities - professional and social - within the constraints of my levels of stress and fatigue. I have learned to cope with the symptoms and with the side-effects of the treatment. I’ve moved past the compulsive touching of my body’s scars and ‘lumps’ and worrying that every ache or pain is a progression of the disease. And I don’t look ill, so I am used to the surprised tone of voice and facial expression that people have when they observe that, far from looking like a wasted bag of bones, I look so well.


I’ve ‘raced for life’ and I make a monthly contribution to Cancer Research UK, but I’m not really a fan of pink ribbons and bows, and I’ve never been a member of any hospital or community support groups or online forums. I have a small, but supportive family and circle of friends and over the years, I’ve made full use of the complementary therapies on offer through The Haven, Cancerkin and Macmillan - and even the activities offered by Sail4Cancer and Odyssey. But these organisations mainly direct their services to newly- or recently-diagnosed cancer patients - and rightly so. I understand that they do not have the money and resources to support someone living with cancer long-term, but that didn’t stop me bursting into tears this morning, when the Macmillan volunteer told me I couldn’t have any more massage treatments.

As I sat on the tube on the way home, sobbing into a soggy tissue and feeling sorry for myself, I realised that since I saw the consultant two weeks ago, I’ve been numb with shock - and carrying on as normal with my writing and teaching. But yesterday, I had to have yet another CT scan to see if the cancer has spread to my skull. And, heaven help me, I am knackered! I am fed up to the back teeth of pulling myself together. Trying to be positive is getting on my tits - and this time, I don’t even care about the bad pun!

Of course, no one knows exactly when they’re going to die. Everyone lives with this uncertainty and in the end, everyone has to face up to their own mortality. And in a weird way, that is one of the positives of any life-threatening diagnosis. Living with cancer has influenced many of the life-decisions I’ve made - ranging from stopping smoking to stopping full-time teaching and becoming a part-time, self-employed writer, and from travelling and spending all my money on holidays instead of saving for a rainy day - but only after I’d pre-paid my funeral expenses, of course.

But today, all I can think of is that cancer scares people - including me. I’m scared that I will die and that I won’t get to dance at my oldest son’s wedding or my youngest son - or my 9 year-old nephew’s.... Today, all I can do is hope that when the time comes, I’ll still be around to say:

That didn’t happen!

14 comments:

  1. I know I've only been living with my cancer diagnosis for 21 months. The op, chemo, radiotherapy and now the Arimidex have knocked me about physically. But the worst thing is the way it plays with your mind and that side of it is invisible to everyone else. I too hate being described as brave and an inspiration - it isn't a choice, you just deal with it. The only complementary or free 'treatment' I've had is a free makeup makeover. Anything else is difficult to get to as I don't drive! All I can offer to you is my long distance mental support and my love. Take care and know that I am thinking of you xx Wendy Phelps from Worcester

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  2. Thank you, Wendy. Thinking of you too. Was your makeover with Look Good, Feel Better? I did that too! It's easy to forget how many services are available in London and not in other parts of the country... but amazingly, I did just hear of a Paddlers for Life group in Worcester: http://www.worcester-busters.org.uk/

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    1. Yes, it was with Look Good, Feel Better - the fantastic goody bag makes you feel fabulous whenever you use the stuff you couldn't normally justify! :) And yes, I know of the Worcester Busters, but I'm not very confident on water and the Severn in Worcester is pretty big and Dragon boats are quite small! I do get down to London sometimes so we'll have to meet for cake! xx

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  3. Oh Makaika, I'm so sorry. And I agree wholeheartedly that the battle metaphor is unhelpful - with its implication that anyone who doesn't 'fight' hard enough is going to be a loser. Everyone dances with cancer in her or his own way. I hope you have friends lined up to support you, to make you tea and cake, make you laugh, and offer tissues on the crap days.

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  4. Private sorrows, eh? Sorry to hear that you're more than usually scared and haunted at the moment, Ros, and even more sad that this post's been triggered by the "no massage" decision from whoever. Sometimes one straw is what you need to keep all the others close to your grasp.

    Unlike others in my own family, I've been lucky, apart from a couple of scares - when life does indeed take on another urgency - so I never had to do the grim carry on carrying on and on and on. So all I can say is that I hope that your hopes are fulfilled and that your writing does what you need it to (as well as bringing success and happiness etc) and continues speaking out in your essential voice. Must add that you always seem three times as full of life as most other people to me, and right now I am glad of that. Good big wishes to you and your family and your books.

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  5. Thanks, Jo - lemon tart and eclairs with Catherine were a highlight and today's already looking much brighter.
    And thank you, Penny - it definitely felt like the 'last straw' but writing about it was cathartic and I hope not too self-indulgent.

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    1. Definitely NOT self-indulgent. Do what you need to do, and know we will be here to support you.

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  6. Well we haven't met, Malaika, but I felt I knew you a bit from our various networks, and now I feel I know you better. I hate these military metaphors for illness too - I think they describe the conventional medical approach more than our personal experience of illness. Massages and all the other things that nurture both body and soul are really important - is there any way you could find another massage therapist? Even at my most strapped-for-cash, I've always given myself the indulgence of a massage treatment every month. Thank you for sharing this moment with us here - not self-indulgent at all.

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  7. You really are an inspiration! I too am sick (sorry) of people telling me to be positive, to keep fighting, and - the very worst thing - that it will be fine. How do they know? So I'm going to say none of those things, except to say I wish you all the very best, and that I send virtual hugs. I find shopping helps when all else fails. Any excuse! xx

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  8. Oh, sweetie, I didn't realise that you've had to go through all of this...so sorry to hear about it. I can only wish you happy writing, living, loving and, of course, dancing. XX JANE

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  9. Thank you for all your kind, supportive, inspiring words, virtual hugs and best wishes.
    Jen, finding another massage therapist is now top of my to-do list - even if it means fewer cakes...
    but hopefully not less shopping - or dancing.

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  10. I'm so sorry to hear about this, Malaika. Sending many hugs and (of course) chocolate. x

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  11. You know I hade to read your words sis. So real and new to my soul. My mother, sister and friend have died from it. I submitted my poem to Debra for the new project. I don't have cancer, that I know of, but for years have struggled with asthma, allergies and now....pushing 60...Arthritis in my knees...both of them. I will pray that you will be cancer free very soon.
    Sisterly love,
    Oni

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    1. Thanks, Oni. Your words of support and prayers mean a lot to me. Thinking of you too.

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