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 needs were actually very small – morphine, and the edge of my queen-sized bed. I had a carer telling me I’m going to fall out, but for some reason, even though I sleep alone, I sleep all scrunched up in the corner of it. And after years of psychoanalysis, I know why – I used to share my bed with10 stuffed animals and a real cat and I’m still accommodating all of them.
I had one more day at outpatients, having radiotherapy, chemotherapy, and an oncology appointment. We had a review of my case with the radiotherapy nurse, and I found out at that time that neither the chemo nor the radiation had worked. This is something I still find difficult to believe, but it was confirmed by Dr Spittle.
I lugged home a pile of pills, enough for two months, trying to figure out what it meant not to have any more treatment. Instead of feeling bad that there was nothing more that they could do, I was relieved it was over. I wouldn’t be prodded and zapped any more. My friends called, hoping that I would take a holistic approach, having now been turned out to pasture by the medical brains; would I like to be reiki’d by a specialist only know to a select few in the world? Would I like cranial osteopathy, by someone who’s cured all a friend’s family (they all look healthy to me)? Would I like to start a macrobiotic diet? I bought the carrots, leeks and onions, and thought I’d make some macrobiotic miso soup, but they sat in the refrigerator for a week, which can’t be good for them. I’m not quite up to cooking yet. As to the rest of it, no one’s touching any bit of me until I’m ready to be touched, which may be never.
The first week passed slowly, with the new drug oxycotton making me sleep all the time. A look at Youtube told me that I was sharing my drug with the street people. I’m not sure how I feel about that.
Scarecrow, scarecrow whats that you popping?
A powerful pill they call Oxy Cotton
But it’s so tiny, that it got you dragging
Haven’t you heard big things come in small packages
[from 'Oxy Cotton' by Lil' Wyte]
During the few hours I was awake I was also sharing the news with friends that the chemo and radiation hadn’t worked. This proved hard, as I don’t really know what to say. I think friends would really like to hear something definite. But nobody can guess the date of their death, and I’ll hold on to the reins for as long as I can, no doubt. I’m at the stage where I’d think about refusing to have chemo again, and I’d certainly refuse radiation, which is causing all the problems right now. [I wrote this a month ago, and now radiation is not being offered; chemo decisions are complicated, and difficult, and belong in another blog, not yet written.]
But I was beginning to feel stronger, and the opera in London was looking great – it seemed like a miracle when I found the perfect seats for Parsifal at the ENO. It lifted my spirits to think I could go out. I believe that it’s good to start out with five hour operas when you’re feeling crappy, and then move down to easier ones later on.
We had the perfect seats, which were right in front of the wheelchairs, on the aisle, as close to the Ladies room as you can get, and near the sofas for the intermission. And Martin had the car right there to take me home. Martin said I fell asleep in the second act, and he woke me up when I snored, but I noticed others around me sleeping as well. But by the interval at the end of the second act I thought I better demurely go home.
Pity really, as the third act may have been the best, and is certainly the most relevant, since it deals with death and salvation.
Suddenly one night I got very sick. I was alone in the apartment, and just managed to call a neighbor, who came over immediately. I put in an emergency call to my oncologist Dr Spittle, but there was no room at the hospital till the next day. So I had a hallucinogenic evening, just me and my morphine together, and I went to hospital the next morning.
The day was the same day as my best friend for over 65 years went to Antarctica, on an anniversary trip with her husband. The only good thing I could think of, reading her blog, was to realize I was happier in hospital than riding the big waves coming out of Drake’s Passage. I was really sick, being attacked by a bunch of nurses and doctors; they all seemed like penguins to me in my morphine haze. I’ve never known a time when I was angrier, more belligerent, sicker. I was sure I was going to die. Angry at everybody who walked and talked and came into my vicinity. Too angry to blog. My friend Martin Sexton put his head in his hands as I berated a nurse for being ten minutes late with pain control medication, the she-devil in me surprised him.
Elizabeth Kübler-Ross may have been right about the angry stage which takes over right before you die.
“Her extensive work with the dying led to the book On Death and Dying in 1969. In this work she proposed the now famous Five Stages of Grief as a pattern of adjustment. These five stages of grief are denial, anger, bargaining, depression, and acceptance. In general, individuals experience most of these stages, though in no defined sequence, after being faced with the reality of their impending death.”
On the second day of my gaol sentence, I was deeply into the anger stage when a tall fit physio appeared, waiting to take me on a hike. Behind him came a speech therapist. I took one look at them; I wasn’t interested and sent them away. That took all my strength – I had to sleep for the rest of the day.
Beyond the usual cancer symptoms – nausea, diarrhoea, and horrible pain – I had also developed pneumonia. They gave me courses of antibiotics, though I was amazed that I had pneumonia, because I never coughed. And I was so tired, too tired to read, too tired to talk, too tired to watch television. This lasted about 5 days.
The nurse would come in to change my cannula (the tube which delivered the antibiotics intravenously) and I would keep mixing it up, and calling it a catheter. She would look at me strangely and wonder why I would want my catheter changed, when it was working very nicely, taking care of things the other end. Finally I would end up going through the words – catheter, canister, canola, cannoli – and never coming up with the right word, cannula. So I was the hospital idiot, and I would end up getting three or four pricks on my thin veins as I looked for the right word.
Finally my very black knight in white armor came charging in and noticed I had been crying, which is something I never do. But in this instance he was right, I had totally given up all hope. The only thing that made me smile was to think of my friend Susan paddling among the penguin dung, instead of the dung I was dealing with – and believe me after six days of nothing I produced some amazing dung. It looked like something from open sewers I remember from my travels.
Back in the pristine hospital bed, I was accosted with a bevy of pills. I gave up looking up each additional pill on the internet to find out side effects. What did it matter anyway? I was on my way out. I did sneak a look at one of the constipation pills and in my drug haze I think it said for terminal cancer. When the message is depressing go off line.
Morphine and oxycottin carry constipation as their outstanding side effect. I want to say a word about the pills they give you to counteract and how they don’t work. I guess if you spend your life in clubs not using the bathroom is a big advantage. Personally the ineffectiveness of these drugs scares me. I find prunes, cabbage, licorice help; but sometimes even I lose my faith completely. A quick trip to a developing country might do it, all I can say is the western world is not up to the task. Where is Delhi belly when you need it?
But by now I had reached the bargaining stage: I would take any pill whatever in order to feel better and get out of hospital. The food suddenly became awful, after I had put up with it for years – even liked it – I think it was just my perception.
After 10 days I could deny my impending death enough to get out of hospital. I even let the tall fit physio take me ‘round the hallways so I could get good marks. By the time my friend Jane Hamlyn appeared at the hospital, and organized carers for me at home, I was ready to accept any advice.
After going through anger, and compromise, I was able to contemplate acceptance, so home I went.
Chemo started early with the wait for blood test results which turn out to be fine. I’m given a sedative routinely, I’m not sure why. It turns out to be an antihistamine which can be bought over the counter. I’m being given ten times the doze intravenously. I try to watch a truly impossibly weird film by a French psychoanalyst, called “Holy Mountain”. Several packets of biscuits and lunch comes and I warm up a bit from the freezing cap (hair disappearing from everywhere but my head – to bring you up to date). I fall asleep almost immediately and am tapped awake by a nurse. I’m snoring so loudly that I’m interfering with everyone’s ability to think. How embarrassing! Ten minutes later, I can’t help myself and I fall asleep again.
This time I let out a snore which is so loud I wake myself up. I look around and everyone is gone. Where did all the patients go? The nurses are huddled at their station far enough away. What did I do?
Now I’m home taking all the pills in some sort of order. A friend comes home and starts talking about a lecture on Quantum physics he has been listening to. We listen together as he pontificates. I feel nauseous. I feel like Galileo’s wife who was worried about the bills and the shopping while he was looking through his telescopes. I was contemplating where I was going to go (bathroom, bedroom, bedroom, bathroom) when I got sick and he was contemplating the mysteriousness of the universe and that we created the universe through our consciousness. It all can be found in
The God Theory: Universes, Zero-point Fields, and What’s Behind it All
By the time we finished this strange dialogue – me thinking V, N (vomiting, nausea), my friend thinking atoms appearing in more than one place at once – I realised it was all over my head including why I needed to take a huge tranquilizer to get through Chemo which is essentially painless. I bet they cut down the dosage next time. No-one ever wants to hear me snore including my friend right now.
And so to bed.