Over the last few weeks, I have been posting occasional extracts from my 2001 diary, when my father was dying of cancer. Here are some more extracts:
Saturday 16th June – Clacton
The other night, my mother’s cousin Sybil phoned. Her husband Osmond is dying very painfully of cancer in Scotland and her sister Daisy is visiting from the USA. Sybil almost broke down talking to my mother on the phone. Tonight, my mother said to me: “I think Sybil might be upset about Osmond. Or maybe she was just upset that Daisy was going home.”
Sunday 17th June – Clacton
Father’s Day. My mother did not want to visit my father today: she said it was too cold and windy outside. I went on my own. He was comparatively perky: when I went in, he was watching tennis on television. While I was there, lethargy slowly took him over but then he started watching TV tennis again and his brain was able to concentrate more on that.
Monday 18th June – Clacton
A neighbour came in, telling my mother that she thinks her son has managed to sell the family butcher’s business in Walthamstow, East London. It has been in the family for 60 years and the neighbour can remember when there were 9 or 10 staff. Now there is just her son and a couple of youngsters. The business has run down particularly recently because of BSE (Mad Cow Disease), the recent outbreak of Foot & Mouth Disease and now scares even about chicken meat. She also says the area has become 75% Asian and they don’t shop in “our” (ie white) butchers’ shops.
Tuesday 19th June – Borehamwood/Greenwich
I went down to see comedian Malcolm Hardee in Greenwich. He is still living in a council flat opposite his club Up The Creek but has just bought a 22-tonne ship moored at Surrey Docks and he partly moved in today, courtesy of my Toyota’s boot. Since April, he has been sharing the council flat with another comedian. Malcolm told me the other comedian idolises him to the extent that he is now going round sleeping with women Malcolm has slept with in the past. Malcolm came home one night and found the other comedian “had just been shagging” an ex-girlfriend of Malcolm and was even wearing Malcolm’s dressing gown.
On the phone, my mother told me that my father today was “very confused and very yellow – jaundiced”. When telling me how confused he was, she got very confused.
Wednesday 20th June – Clacton/Colchester
When my mother and I visited the nursing home in the afternoon, we were told that, in the morning, my father had been bleeding a lot of “frank fresh blood” from his bottom, but it had stopped itself before the nurses came in. “Frank” is a medical term apparently just meaning “fresh” too. My father was confused, with a faraway look in his eye and slightly yellow, but not as badly jaundiced as when my mother saw him yesterday. When I left the nursing home, the matron told me (alone) that she thought the liver cancer was taking over.
In the evening, my mother and I went to Colchester for the arranged appointment with the bowel consultant and his associate the cancer consultant. The appointment – as it had been a month ago – was supposed to be with my father, but he is in no condition to travel from Clacton to Colchester.
My father was given two liver function tests two weeks apart (the second one yesterday morning) as well as one after the operation. The one after the operation was OK though not very good. The one given two weeks ago was worse. And the one given yesterday was worse still. We were told that there could be several reasons for my father’s jaundice and physical weakness.
The bowel consultant described the arteries going into the liver as like a tree. There’s the thick main trunk, then less thick branches, then thinner and thinner branches. When he operated, the tumour seemed to be tucked away, not affecting any serious part of the tree. It could have moved and be affecting a more important branch, preventing bile being drained off and causing jaundice/lack of energy. Or the cancer could have started to take over significant percentages of the liver, preventing it functioning more and more. If the latter was the problem, there was nothing that could be done.
If the former was the problem, then they could put in an ERCP – a small plastic tube. This is inserted via the mouth into the liver. It might drain away some of the bile, alleviating the jaundice and lack of energy problem.
In order to know the cause of the jaundice, they would have to give him an ultrasound scan in Colchester – he would have to come up from Clacton for the day. If – and only if – the problem could be treated by the plastic tube, then he would have to come up to Colchester again for the insertion of the tube and he would return to Clacton the following day. If – and only if – the tube was effective, then his jaundice and energy problem might be slightly alleviated and there was a chance – but only a chance – that his liver function test results might return to what they had been three tests ago and, at that point it might – but only might – be possible to give him chemotherapy treatment.
The decision for us was whether we wanted to put him through that process for the possible result. My mother’s reaction was to say: “Is it worth it?” She didn’t think so. Neither did I.
Returning to Clacton, I stopped off at the nursing home at 7.45pm where my father’s GP had been due to see him at 7.30pm. I waited until 8.00pm talking to the night supervisor. She was horrified at the very thought of my father being subjected to any trip to Colchester: “He’d never make it,” she told me. When he is taken to the commode in the mornings now, they mostly have to use a hoist for him because he hasn’t the strength to go supported by two nurses. He is basically, now, incontinent and, before I arrived, he had been again bleeding from his bottom though slightly less so than this morning.
The GP eventually came around at 9.15pm after going to an emergency elsewhere. He has prescribed daily 30mg doses of pain reliever MXL, which includes some morphine… and three 2mg doses per day of the steroid Dexamethasone to try and relieve the liver. When the GP saw him, my father was very confused, saying he lives in Thorpe-le-Soken (a village several miles away), is eating very well and is going home soon.
The night supervisor had told me that, this morning, my father looked at her and said fatalistically: “I’m not going anywhere, am I?”
Back home, my mother partly broke down in my arms. After I had phoned to tell my aunt (my father’s sister) the news, my mother said to me: “She’s hard as nails. Last night she said to me…” then partly broke down again.
Last night, my aunt told my mother: “We’re going to lose him.”
Breaking down, my mother told me: “That doesn’t help…”
“The meeting with the bowel doctor was a big shock to you?” I asked my mother.
“Yes,” she told me, “I’d hoped against hope.”
I think this may be the first time she has fully accepted he is going to die. She blamed herself (unjustly) that he cannot come back home because she cannot cope. And she is deeply upset at the decision she has now taken not to drag him to Colchester for the ultrasound and possibly also the ERCP treatment. “We can’t put him through it,” she told me, partly breaking down.
Thursday 21st June – Clacton
The matron told me that the GP last night found my father so confused he thought there might be secondary tumours in the brain. I noticed my father was no longer wearing his wedding ring. I guessed his fingers had become so thin that it had simply slipped off.
Friday 22nd June – Borehamwood/Clacton
As soon as I got back to Borehamwood, my mobile phone rang – it was the matron at my father’s nursing home. My mother and aunt had walked in to see him and found him lying back with his mouth open, apparently not breathing (and, as I later found out, his false teeth dropped down from his upper gum), a spoon in his hand and a bowl of jelly in front of him. My aunt, a former nurse, found he had no pulse.
The nursing home matron was up in the room within about a minute and found he had a strong pulse but, by this time, both my mother and aunt were in tears.
I drove to Clacton from Borehamwood in the early Friday rush hour – about 2 hours 45 mins instead of the normal 90 minutes – to find my father looking dramatically thinner, bonier than he had when I saw him yesterday afternoon. I got there around 6.30pm by which time my mother and aunt were dry-eyed but still twitchily upset. I drove them back to their homes around 7.00pm – my mother broke down in my arms – and then I went back to the nursing home where my father was asleep. When I had left, I told my father:
“I’ll be about half an hour.”
“You’ll be back – and the boatman?” he asked me.
When I got back, I asked my father if he felt hot.
“I really don’t know,” he replied.