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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