Sunday, April 21, 2013

Moving on


Day 133 

General status update
FEC cycle 6, day 18 

Fatigue/weakness: it’s all a bit random now – I’m getting stronger, but there are still days of being completely wiped out.

Nausea demon: completely oblivious to his surprise leaving party preparations, because he’s spent the whole day with headphones on, chanting tables of Russian irregular verbs. Which, it turns out, are very pretty:
жаждать: жажду, жаждешь,жаждут
стонать: стону, стонешь
жаждать: жажду, жаждешь,жаждут
дремать: дремлю, дремлешь, дремлют

Despair Demon: looking depressed – his job is going to be so much harder once I’m out of the house and exercising properly again.

Chemo Muse: she has track suit, whistle, a peaked cap and trainers that glow in the dark – so, all set to go as my new swimming coach tomorrow.

Chemo Brian: since he is intent upon accompanying me to Ayvalik, we’re going to have sit down and have a serious talk about Turkish drug laws.

State of mind: We’re all going to the pool tomorrow, pool tomorrow, pool tomorrow...


When you’re first diagnosed with cancer it is unreal: you think they must have made a mistake, that this is a bad dream from which you will soon wake up, and then everything will go back to normal. That phase finishes – at least it did in my case – once the treatment begins, and they start performing unpleasant, invasive and sometimes painful procedures on you, after which there is no more possibility of denial. For me, that was on October 3rd last year, the day before my lumpectomy operation, when they injected radioactive dye into the nipple of my right breast without any anaesthetic; I still flinch every time I remember both the pain and the way the shock of it blew away my denial, forcing me to face up to the fact that the cancer was real, and there was no escaping from the many months of treatment to come.

At that point the enormous psychological and physical impact of the cancer and its treatment becomes, if not your whole reality, then the overwhelmingly dominant feature of it: I have often thought that being diagnosed with, and undergoing treatment for, cancer is like undergoing a strange kind of assault course, in which you are what is being assaulted, mentally and physically, for an extended period of time. Chemotherapy treatment in particular is an 18 week toxic endurance test which ravages both body and mind, and more or less puts you under house arrest with its combination of crippling fatigue and the very real danger from acquiring any kind of infection in your immuno-suppressed state.

Writing this blog is what has saved me from going completely demented during the last 18 weeks of chemotherapy treatment: I started it the day before the first dose of FEC, at which time I was still deeply reluctant to have chemo, and fairly crazed with anxiety about what was going to happen to me, and have published a post on the blog every single day since, without fail, although some posts made in extremis were fairly brief.

The posts averaged about 1000 words a day, though, and total word count is now around 140,000 words, which is half as long again as my DPhil thesis, which took several years to write, not 18 weeks – this Stakhanovite work rate can only be attributed, I think,  to the extraordinary mental energy and focus that the Dexamethasone steroids gave me. I can’t find any other explanation for it.

There was a fair amount of medical drama going on throughout the chemotherapy treatment, as well as the day to day torment of the side effects, so I was never short of things to write about, and the daily discipline of putting it all into a coherent narrative, and meeting my self-imposed midnight deadline, gave me a task to do, and a sense of purpose, and prevented me from spending too much time lying on the sofa feeling sorry for myself and sobbing over the Pity Of It All.

Many people have told me that reading the blog has proved helpful to them, which makes me very happy; in addition, the ‘Sponsor My Chemo’ drive has now raised £1,500 for The Haven Breast Cancer Support Centres, which I’m also extremely pleased about.

To be honest, though, I started the blog for entirely selfish reasons, to try and make bearable something which I not only perceived to be unbearable, but had spent twenty years swearing I would NEVER do, after the death of my former husband from a chemo-related infection. Never say never – look where it got me.  

And it worked brilliantly for that particular purpose: writing the blog every day became my project, my homework, the thing which enabled me to distance myself from what I was going through. I couldn’t get away from the cancer and the chemo, but writing about it somehow enabled me to remove myself from it, for some of the time. I had an extremely bad time, physically, during the chemotherapy, including some unfortunate occurrences at the hospital, but writing about it made it mentally bearable, more or less. 

Now, though, I am in the last week of the last chemo cycle and as FEC finally lets me go, it’s time for me to let go of the daily writing of the blog. Its job is done, and I’m tired of the daily deadline. There is more treatment ahead – 3 weeks of radiotherapy in May/June, and then 5 years of taking the hormonal drug Tamoxifen – but with the end of chemo and my release from its chemical prison, the cancer and its treatment will no longer be playing such a dominant role in my life. I need to leave it behind now, and get on with my life again.

There’s going to be a period of convalescence –it takes 4 to 6 weeks for the chemotherapy drugs to leave your body, although the fatigue can last for months, and the radiotherapy treatment will cause more fatigue – but I hope to be properly physically fit again by the end of the summer. I was told breast cancer takes a year out of your life, and so it has proved.

Tomorrow, when I plan to get back into the swimming pool again for the first time since the chemo started, will be a hugely symbolic day for me: I will be moving on, both physically and mentally, free at last from the chemical prison, and that also seems the right time to make my final daily post on the blog. I will keep the blog going, and continue to post on an occasional basis, but the unbroken narrative of Chemo Nights will end tomorrow, on Day 134.

It’s time to move on…

9 comments:

  1. Quite rightly so Caroline, your mind and body have been devoted to this treatment for so many months.

    There is an advert on a local radio station at the moment for an event being held today, Courage on the Catwalk - for female survivors of all cancers - and one of them tells of the moment of being told the diagnosis and how positive her consultant was saying 'there is life before cancer, there is life through cancer and there is most definitely life after cancer' and your blogs shows/will show just that to those recently diagnosed, going through treatment or blissfully unaware of what is ahead of them.

    Thank you for taking the time to make your thoughts public xx

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  2. I feel privileged to have shared this time with you,the downs, the occasional ups when the Dexys really set in!
    Just the whole caboodle.
    Thank you for the discipline it has taken to produce this blog in spite of severe discomfort and fatigue. It's been hugely informative although I hope never to have to refer to it in a personal way, obviously.
    Now prepare for the return to The Camel Barn, swimming and all that lies ahead. Unlike your stupid once friend, you're a changed person, but I reckon this Caroline is mentally a hell of a more rounded person and has a great deal of qualities that may have been hidden until this ordeal had been faced.
    My love to you both and to the moggies. Have a long and gentle recuperation xxx Tally

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  3. Caroline,
    The blog is wonderful, YOU are wonderful.
    I can't tell you how many times I read your posts, how many times I copied and pasted excerpts to help me get through the days - and nights - of my own chemo therapy. I even printed bits and stuck them here and there. They helped me to feel less alone, gave me courage: if you could bear it, surely I could. Still, that ol' Rubicon seemed so distant...
    And then I was there, standing on the shore. And I couldn't leave you behind. So I've tried to be here for you, as you were there for me.
    And I am certain there are and will be others who will read your words, take comfort from and find courage in them.
    Thank you, my friend.
    xxx Jen

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  4. thank you for such a wonderful blog and i hope swimming today goes really well. Sending hugs and support from a stranger

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  5. So happy for, and proud of, you. I will miss your daily company, but it's for the best reason of all. We'll still be thinking of you, though. Congratulations! Janet

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  6. Hello Caroline, I started reading in January when I was still in the waiting room myself. Even though I had no idea then that chemo was on the cards for me, I was drawn in to your story by your wonderful writing - warm, witty, and engaging - and your fresh take on it every day.

    And I've picked up so many tips...Emend....steroids....

    I wish you all the best in your continued recovery, enjoy the swimming and your trip to Turkey.

    Deborah x

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  7. Hi Caroline

    As I predicted, I've avidly read every single one of your daily blogs (though not necessarily every day). I've been so inspired by your courage, fortitude and humour throughout and some of your writing has for me, been nothing short of brilliant!

    I wish you all the very best in your recovery - you certainly deserve to focus purely on your own needs from now on, and not the daily demands of the blog, but thank you so much for writing it.

    Have a fabulous time in Turkey.

    Val x

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  8. Swimming! I hope you have a wonderful swim today, CarFo. I will keep checking back (just as I do at the Camel Barn Library) to see if there are new posts, but you will keep us informed of the next big blog you plan to write, won't you?

    You could write some adventures of BigSisFo in Northern Yorkshire (has she rid the house of rats yet??) or perhaps a wedding planner blog for you and R... (hint hint)

    Enjoy your trip to Turkey and be sure to update us!

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  9. Rachel_Eating RaoulApril 22, 2013 at 10:08 PM

    I can't tell you how sad I am that these posts are stopping (for my sake) and how glad I am (for your sake, that they are), and how in awe of your bravery, humour and strength I am. I have read every post with eager anticipation and cried and laughed at what you have written. I will miss you more than you can know, and wish you all the 'well' in the world.

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