Cancer 65
I am so very tired. I am in my third cycle of chemotherapy and fortunately people are generally commenting on how well I look, that I look weller than a well person. I must admit the side effects so far are not too serious. A little diarrhoea, feeling a little queasy now and again, and tiredness. Tiredness is the main side effect. I get up in the middle of the night every night, but that is nothing new. I seem to be at my worst a few days after the chemo – basically right now. I finished the chemo three days ago. Last night I had as good a sleep as I ever have (5-6 hours sleep?). I was only out of bed for 2-3 hours. But right now I keep nodding off. I want to sleep but it is daytime, waketime, and my body protests that it is not meant to sleep during the day.
On another matter, I have more or less come to terms with having a stoma, but I am missing out. As I have undoubtedly mentioned before I miss out on the (generally male) pleasure of sitting on the toilet, reading a book, and taking my time evacuating my bowels. What is left of my bowel, emerging from just below my front left ribs, evacuates itself at will. I have no control over it whatsoever. As someone pointed out to me, there is possibly an evolutionary reason for the pleasure received in evacuating one’s bowels. It is as important to keep oneself clear of waste as it is to put nutritious food inside in the first place. By having pleasure from evacuation it is ensuring that people freely and willingly empty their bowels. There is no doubt something Freudian about this, somehow relating to the anal stage of sexual development or something, but I don’t know what it is.
So I am missing out. I try to recompense myself by changing the stoma bag in the night. I take off the old one, clean up, and then sit with it open waiting and reading, and ready with wet wipes and dry wipes. If I am lucky then a good-sized turd will emerge from the hole in my abdomen which I catch and remove. It is hard to say why this provides some kind of pleasure. If you don’t have a stoma it is probably absurd. How can it be pleasurable to catch a turd coming out of your abdomen? I suppose it is that when the normal process has gone you take the pleasure where you can get it. It provides a little of the satisfaction of going for a crap. Seeing it emerge, controlling the after-effect of the function. Even feeling emptied. You know that feeling when you have been to the toilet. You feel better. You feel cleansed. That is what I feel after my experience. It is all very well clearing up a full bag but perhaps it is the nearness of the open experience that provides that limited satisfaction.
Don’t worry, it is a surprisingly clean process. With wipes, wet and dry, and my little black bags everything is hygienic. Where it becomes less so is in public toilets. It is usually manageable in a disabled toilet, though there is rarely a shelf on which I can put my changing kit. There is usually a bin though. The problem is in ordinary toilets, in pubs and such like. I can change the stoma in the toilet but there is rarely a bin to put the resultant full bag in, and I am not going to walk out of the pub toilets with the bag asking for somewhere to put it. I do have limits, you know. There are 170,000 people with stomas in the UK. We perhaps need to ask for slightly improved toilet facilities for when we are obtaining our little pleasures.
Dr Nigel Hunt 
Hi Nigel I read your posts with interest and sometimes dare I say enjoyment. The blocks are clearly off on any political correctness and I enjoyed your diatribe about pretending that girls and boys are the same. My wife used to be a nursery teacher and it was absolutely clear the girls join the Lego bricks together in lines and the boys build towers with them. Back in the Stone Age girls were presumably laying out lines of stones whilst the boys built mounds.
As you know, I am still working for the Bosnia-Herzegovina UK network. I lay awake the other night having a minicrisis about myself wondering what exactly it is that motivates me. People always assume that I am driven by social justice and human rights. If I am honest, I don’t think that’s true. I’m not a campaigner. I think that I’m just at my best when I don’t know what’s happening next. I’m a lousy manager but good at development. And I’m probably not very intellectual.
My first dose of cancer was when I was 35. I spent a year feeling very vulnerable every time I got an unexplained lump or pain as they hadn’t been able to remove the whole thing and sometimes so tired I just wanted to lie down on the floor. Then a very informed locum told me that it was type of cancer that could spread anywhere but wouldn’t necessarily do a lot of damage and probably remain undetectable. My own GP commented that it’s a sort of privilege to be in touch with your own mortality.
So I sort of gave up worrying but every time I’ve got to a significant birthday I’ve given myself a pat on the back for surviving. On my 65th birthday I looked around at my family and grandchildren and decided all was well and anything here on was a bonus. A week later I was told I had probable bowel cancer and to be honest just thought ‘well nothings changed from a week ago’ and then got into the whole process more with curiosity than fear. I’ve spent so long thinking that cancer will get me in the end that it just feels a part of my life.
Got to say I’ve been lucky though as I lost a lot of guts but didn’t end up with a stoma. I smiled at your description of the lost pleasure of sitting on the bog. It takes me ages these days, I avoid eating much at night as the pain at three o clock in the morning isn’t worth the hassle and if you want a good investment buy shares in Shreddies. And just recently I have found that I congratulate myself aloud on a good shit and then think bloody hell did I just say that? Is this what I’ve come to. I’m not exactly fading away though. And I enjoy a drink.
My friend Sue who’s a year older than me phoned to tell me she had lost her remaining breast to cancer and was now having it rebuilt. Said she’d have a party when it’s all done and invite everybody to feel her new boob. Apparently she did the same thing first time round in 1998. I’m now wondering why I didn’t get the same invite then……….
I like the fact that you are taking off in between treatments. We went to Shetland this year because we’ve never been and though we should do it whilst we can. Shetland is so bleak and sparsely populated it’s like going on retreat. Loved it. And you’ve been up in Haltwhistle? I loved visiting the paintings of John Martin when I was young and used to frequent London art galleries. It’s not a quick read but Max Adams book on the New Prometheans led by Shelley and looking at the link between art, science, literature and industry during the Industrial Revolution is an astonishing read. And John Martins paintings are the inspiration for so many sci fi films.
You are greatly missed. At such stage as you can cope with the great unwashed, Anes, Ferid and I would enjoy a catch up.
Keep fighting Nick
Sent from my iPad
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Hi Nick
Thanks for your comments. I can probably learn from your much longet experience of cancer. I am a beginner, just trying to find my way. I currently do not restrict my diet, which is fortunate given my love of food.
I know nothing of John Martin but I will find out, and I have ordered a copy of The Prometheans. I have spent my life avoiding Shelley and his ilk as I am a philistine when it comes to poetry (excepting Owen and similar).
We are on a city break at the moment. Norwich. New to me, but many bookshops though too many churches.
Yes to catching up of course. I will check my chemo and holiday diary for a gap!
Now to breakfast
Nigel
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