My day starts out at 3 o’clock in the morning when I listen to the world service – although that puts me back to sleep – and I wake up again at 7. In London we have a news program that begins at 6 and goes on until 9 (‘Today’) and more or less I listen to that. At 9 I take my morphine and steroids (uppers and downers) and my friend Martin makes my breakfast. There is nothing like listening to our mad hatter coalition’s proclamations to make him rant through breakfast. By 10 the steroids have worked and I can actually think until about 4 in the afternoon. So that’s the time I get doctors’ appointments and see friends and explore the bargains to be had at Michelin-starred restaurants at lunchtime.
Meanwhile there is the underlying hum of discomfort – I hate to call it pain. My breast cancer has not gone to my vital organs (kidneys, lungs) – which is good news – but it has spread all over the skin on my breast, back and chest, making horrible welts. It is one of the ugliest patterns I have ever seen. I’ve seen the New Guinea tribal people who scar their bodies and the tattoo artists of Miami Beach but none look as scary or as truly disgusting as mine.
I have carers (professional ones, through an agency) that come every day at 12. They look at the bandages that try to cover the worst welts. Every day someone has a new solution. The bandages are too thick, too thin, too wet, too dry, too small, too big… and they run off to the nearest pharmacy to order more. I have about 20 boxes of bandages, all very expensive, none of which I am going to use.
Pretty soon the bill was getting extraordinarily high, for example, a bandage that had to be changed twice a day was costing £45 (about $75) for a box of 5. Then there’s an amazing thing called saline, that comes in little tubes and is just salt water. Plus I had to pay the carers to come in and change the bandages, and they were getting more and more uncomfortable, and kept falling off.
Every week Dr Spittle, my oncologist, has looked at the welts and said she is sorry that I have to go through this. I finally asked her, woman to woman, are these bandages helping? Her honest answer was ‘no’. Tee shirts can be cheaper then my bandages (and more comfortable, and hide more) so she suggested I just buy tee shirts and throw them away after each use. It was good to hear a practical idea; medicine has fewer and fewer answers in my case. I’m finding that very difficult to face.
I need my carers, I’m willing to admit that, but I can’t always figure out what they can do or should be doing. She makes my bed, and fixes my pills, and until today she did my bandages, and cleans the kitchen, and she shops, because by this time I don’t want her around so I send her out to get whatever I can think of. At 3 my cleaner comes in, and the apartment gets cleaned all over again.
In between all this busyness, I try to do something constructive like paying my taxes, or planning my funeral, or writing my blog, and I find it difficult to do this with a carer waiting for me to give her something useful to do.
My carers arrive not knowing the neighborhood, and very often having English as a second language. Most take the job because they are traveling – they might have some nursing experience, but they’ve never seen anything like the welts on my chest, and they haven’t dealt with terminal cancer.
Sometimes I ask them to cook for me. I asked one if she could cook, and she said she could; I asked if she could roast a chicken, and she looked shocked – she said, her mother had always bought ready-cooked chickens. My friend patiently taught her how to cook a chicken. She claimed to cook spaghetti and lasagne, but I never took the chance. Masterchef this is not. Another cooked up a huge pan of soup that looked like a witch’s brew, and scared me off.
This is a week that has been nearly all bandages. One or two treats but not nearly enough. But this is the way cancer is, in some weeks I become obsessed with negative thoughts, and there’s not much I can do about it. Like I keep asking the carers what it’s like to be with someone who’s dying (they know little but I ask anyway); and then I ask my friends about their experience of hospice care; and then I look at funeral services, funeral directors, and crematoria, and agonise.
I guess this is what is called negative thinking, but in a way it is part of the process that I have to go through, and while it’s painful, I can see that there are things to look forward to, and this obsessing will end when my two grandchildren (Clara aged 10 and Juno aged 5) bounce through the door next week.
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My war with these welts had been going on a long time, but I never paid attention to them at the beginning. It was just a few mosquito bites that Dr Spittle seemed concerned about. She looked at them every week, and then finally said it was time for a biopsy. What a waste of time I thought. What are a few bumps on a body full of unseen cancer?
When the biopsies showed cancer Dr Spittle wasn’t at all surprised. But it was the beginning of a long invasive war. These little bumps multiplied; they went all over my chest and around my back. Perhaps they wanted their revenge because they were angry at being the victims of 50 radiation treatments.
All resources have to be mustered just to fight these stupid welts: bandages have to be changed regularly, hands sterilized, water sterilized. I’ve asked each nurse if they’ve seen anything like them before, when the answer is no I really worry. Only one nurse has said yes and I always think she lied. Each nurse puts the bandage in a different place (there’s a lot of places to pick) and in a different way, and on my last visit several nurses were called in to look at these strange marks. Once in a while a swab is taken, and invariably they show staph infection. I go home after these visits with antibiotics; so far they haven’t worked, but maybe some day…
I keep it a secret from the medics, but I’ve given up my personal fight against these welts, it’s too much: I’m supposed to put one kind of cream on the closed sores and another on the open sores; I should have sterilized hands when I do that; I can’t even reach the ones on the back; so no chance. I’m also not supposed to take hot baths (my favorite indulgence – which shouldn’t be an indulgence, it’s just a bath, for God’s sake), but I do and invariably get the bandages wet. I’m very naughty with my home care, and the infections get worse instead of better.
That is not to say the nurses don’t put bandages on, 2 or 3 times a week, they’re doing their best, but the bumps win. Whoever thought that with all the cancer around it would be the bumps that were most enduring. If it were up to me I would just let them fester. In the light of everything else, I find it hard to take them seriously.
The second major symptom is more common, though I’ve avoided it for 16 years of cancer. My right arm feels as if it doesn’t belong to me. I lost weight during my recent stay in hospital, but at the same time my right arm has doubled in size. The amazing thing is, one is not supposed to consider lymphoedema as caused by cancer and yet what the hell did cause it, if not cancer? I blame radiation. I look at my hand and say ‘Move’, ‘Write’, ‘Stretch’, ‘Hold a fork’, ‘Do anything’, ‘Show some spirit’… but nothing happens. I am now supposed to welcome a big bandage which stretches all the length of my arm, and holds it tight, holds me together. I just ordered one in black, which should be sexy enough to wear at night. (Keep dreaming… tomorrow I’ll be 25 again, and look amazing.) Right now, this stocking has no redeeming features.
Someone said that a massage from a lymphoedema lady would help. I found the so-called expert, who just offered palliative treatment. It was an extraordinarily soporific experience – for both of us. She chased my lymph around, with gentle patting motions, and I dozed off. I was surprised that she said I would be tired afterwards, spaced out – and that was exactly what I was trying to avoid, the morphine is bad enough. I walked home in a fog and was asleep by four o’clock in the afternoon.
The deal with cancer that I thought I’d made was that the cancer was confined to my breast. Whoever thought that breast cancer would end up as a bunch of bumps all over my chest, and an arm that doesn’t function? This is not what I expected. The breast that was involved is long since gone, and now I’m left with something I don’t understand at all, and frankly don’t believe in.