I was delighted this afternoon when Elaine told me on the phone that they were discharging her and that I could come and get her. We arrived back home just after six, and Elaine’s vitality is very much better today than it has been over the past few days. There have been times in the past few weeks when Elaine was not up to talking with people so it is good to be able to hear Elaine’s socialising (we have a couple of visitors) nearly three hours after we returned home.
I’m being kept in Cookridge because of a high temperature. (Chris is typing this for me.) The drain has just been taken out. If my temperature remains high overnight, they will probably want to keep me in tomorrow. Anyone who could visit would be most welcome, but please check if I am still here. (0113 2673411, Rutherford Ward) Visiting hours ar from 2-8 pm.
If you’ve got to be in hospital, this is th best one I have been in. The staff are very friendly and warm. There are views of trees out of the window and it is far quieter than other hospitals, with reasonable food.
Here’s a quote from “Cancer Ward” by Solzhenitsyn (pub 1968) which I’ve just enjoyed reading: “They all longed to find some miracle-doctor, or some medicine the doctors here didn’t know about. Whether they admitted as much or denied it, they all without exception in the depths of their hearts believed there was a doctor, or a herbalist, or some old witch of a woman somewhere, whom you only had to find and get that medicine from to be saved.” In the mid-1950s, Solzhenitsyn went from concentration camp to cancer ward, recovered and is still alive.
Elaine is back in hospital – Cookridge this time. Yesterday, she was diagnosed with ascites which is is an accumulation of fluid in the abdomen caused by the cancer. She will have to stay in for a day or two while it is drained. This ascites could also have been aggravating the nausea and loss of appetite. Since having the line out last week, her mental vitality has returned – she has spent a lot of time on the phone and has really enjoyed talking with visitors. Previously, I was having to turn people away.
However, physically she seems to have no strength, finding it hard to walk or climb stairs. Today at the hospital, for the first time, she had to use the wheelchair to move between sections. On Tuesday, after her trip to the hospice, she went to bed around five and slept right through.
We also received the results of the scan – bad news. The report referred to innumerable metatases in the liver. Given that the current regime of chemo is apparently no longer working, it will now cease. However, there is another form of chemo which she will probably start in August – and this one involves hair loss. It apparently has a fifty per cent chance of holding back the progression of the cancer for a while.
So we have plenty to think about, but at the moment. Elaine is really looking forward to having the fluid drained as it has been causing her serious discomfort over the past day or so. I am hoping that this might also be the source of her loss of energy. She has hardly eaten over the past few weeks so if she can recover her appetite I hope that will help.
Elaine wrote this yesterday:
Today I went for my day at the hospice for the first time since May 15th. It’s a very cheery place and it’s good to be with so many different types of people all in the same position of having incurable diseases.
One of them K. made me feel particularly humble and grateful for the life I have had. Only 31 and with an 18 month old son, she developed MS when she was 25 after a life which seemed until then very successful. She done a Maths degree at Manchester University and then became an insurance actuary, a job which she obviously loved and found very fulfilling. Her MS has taken some frightening forms including 6 months of blindness from which she has now recovered. She discussed her situation very matter of factly without a trace of bitterness or whinging. She can’t walk without a stick, has to have bath aids and has had several falls luckily when her little boy has been at his nursery. She took such pride in her son who she even managed to breast feed.
We shared stories of the horrors of peripheral neuropathy which is one of the symptoms of MS and a side effect of the drug oxaliplatin which I have been given & our fears about becoming a burden. But it felt so wrong for me to be having this conversation with someone of my daughter’s age rather than my own or older.
If self pity creeps up on me I am going to try to remember K.
Just when things were looking very bleak, something happens to re-ignite our hope.
Elaine has been seriously ill for the past 3-4 weeks, although she has rallied a little this week. We began noticing a connection with something the district nurses were doing. Each time they flushed Elaineâ€™s Hickman line, within half an hour, she got another attack of the rigor (pronounced rye-gore â€“ involuntary shivering). It happened again yesterday morning for the third time and we talked about bringing it to the attention of Dr A.
By chance, yesterday afternoon we finally had a visit from a MacMillan nurse. We could immediately see why everyone raves about them if Nurse A was typical. She was caring and intelligent and unlike the other nurses, involved me in the discussion nearly as much as Elaine. We just wish it hadnâ€™t taken so long for Elaine to see one â€“ we first asked last summer.
We described the correlation we had noticed between the district nurses flushing Elaineâ€™s line and the attacks of rigor. A great knowing big smile came over her face. â€œItâ€™s an infected Hickman line. Itâ€™s the classic symptom.â€ She explained that she had spent five years working on an oncology ward and had seen it many times. This was fantastic news! It could mean that Elaineâ€™s recent illness was not directly because of the cancer (as she was thinking) but because of an infection. Over the past two weeks, Elaine had seen at least ten different doctors, either GPs or more specialist at Calderdale Royal. None had made this diagnosis.
This morning, we saw Dr A, the consultant at Cookridge. and he confirmed Nurse Aâ€™s diagnosis. He explained that they could treat the infection with antibiotics, but in his experience only a minority responded. It was agreed to have the line removed next Wednesday when she attends Cookridge for the re-arranged scan.
Elaine is now sleeping, totally exhausted after our trip to Cookridge â€“ her recent illness has taken away much of her normal vitality. But we drove back really happy at the prospect that she may get much stronger after the line is taken out.
The decision about resuming chemo will be made when the results of next weekâ€™s scan are known.
Listen to Elaine speak this entry.
I probably have a year to live. This time last year I had two years to live. This time next year I might be in the ground or frailly existing a yellow, swollen bellied skeleton, literally a shadow of my former self. â€œLiving and yet not living, dying and yet not dying.â€
Though the worst of the anger has subsided, I havenâ€™t and still canâ€™t accept it. Everyone thinks I am being so brave but they donâ€™t know Iâ€™m still screaming internally at the injustice of it all. Itâ€™s not fair, itâ€™s not fair, itâ€™s not fair.
Apart from my maternal grandmother who died tragically young at the age of 37 from breast cancer and my parents who died unnecessarily of suicide and manslaughter at the ages of 38 and 37; at 55 I shall be the youngest person in my extended family to die so young. Why even 21 stone Uncle Cyril, with his 40 a day habit, 6 pints night and penchant for fried food at every meal lived until he was 67. Whereas never smoking, vegetarian, 40 laps of the swimming pool daily isnâ€™t even going to live as long as the average Glaswegian male.
I am trying to die â€œgracefullyâ€ I canâ€™t help these waves of anger and injustice which engulf me whenever I see a smoker or a person I know whoâ€™s lived a dissolute life.
I am pleased to report that Elaine came back home at lunchtime today.
Nothing is certain till it happens. Cookridge got too busy to take Elaine – there were no beds available. So she is still at Calderdale Royal. But she seemed much better. And is now eating small amounts of food quite regularly, without the nausea. We feel that there is a chance she might be able to come home tomorrow or Sunday. But nothing is certain . . . .
One of the doctors she saw introduced himself as Dr Stalin. Elaine had to ask. It seemed that the southern part of India where he came from was, in the 30s, full of communists. Many people named their children Stalin, and it has remained a popular name in the area.
Elaine is still very poorly but this evening says she thinks there has been some improvement. She has managed to hold down a yoghurt at lunchtime and an ice-cream (!) this evening – only the second day she has eaten anything in the past week. Her nausea has subsided for the moment.
Tomorrow morning, they are moving her to Cookridge. She was given a choice but we felt that Cookridge would give her better treatment – and she said the consultant who did the round at her ward at Calderdale Royal was a Lancelot Sprat type creature.
In spite of the best efforts of the district nurses and Dr H, and their lines and anti-sickness jabs, Elaine had yet another distressed night, and was feeling terrible this morning. A further attack of rigor with vomiting and diarrhea meant we called the doctors again.
She has been taken by ambulance to the Medical Assessment Ward of Calderdale Royal.