Christopher died peacefully at 2pm this afternoon, 7th August. His sister was in time to say her goodbyes. I was with him to the end. He was calm and did not suffer at all.
I’m too upset to manage more than a short post, but I want you to know that we both have drawn huge support from all of his friends reading this blog.
Gillian
Chris passed a much quieter and more peaceful night last night. I got a lovely surprise in the evening when my friend Sam turned up with a meal courtesy of our favourite pub – the Plough and Harrow at Guarlford. That was delicious and really lifted my spirits. Thanks J and Mike!
My sister is taking care of all the practicalities at home, and I am simply sitting with Chris, and working with the nurses and doctors to keep him as comfortable as possible. We are not expecting any major changes today.
Many thanks to those of you who have visited Chris this week. For those of you where he was awake, I know he appreciated your visits. Let us hope that even when he was unconscious he felt your good wishes. It’s now got to the stage where his family need to come and say goodbye. We’ve got a number of relatives on both sides visiting this weekend to say their farewells. The hospice is going to be very strict from now on at limiting both the number and duration of visits, so please can we keep to family only this weekend, since they are all travelling long distances to see him.
Things went from bad to worse overnight. Chris was very agitated and kept trying to climb out of bed – despite the guard rails being up. That’s how he keeps falling of course. He was very confused and unaware of his surroundings. A nurse and I were with him the whole night, and I got just a few hours dozing on the camp-bed.
This morning I had a long discussion with the doctor. She is shocked by the sudden and massive deterioration compared to this time last week. We have agreed that the kindest and safest thing to do is to move to an end of life management plan. In essence that involves keeping him heavily sedated with phenobarbitone, plus pain relief and various other drugs to keep him comfortable and reduce the risk of seizures.
So Chris will be in no more pain or distress. He will be sedated now for as long as it takes. The doctor thinks a few days to maybe a week (as he is young and strong so may not slip away quickly)
Keep thinking of us both please. I can’t respond to all your comments but I read them all and it is a lifeline for me at the moment.
By Gillan
Late this afternoon I was given a lift home by a friend. I put on the laundry, updated the blog, made some phone-calls and emails. Then I raided the fridge and larder to see what was still in date that I could call supper. Just then the hospice phoned. Chris had got very agitated, and fallen out of bed again. That’s the third time in less than 24 hours. They asked me to come back into the hospice to sit with him this evening and to sleep on a camp bed in his room overnight. Basically, they think he will still listen and respond to me, and be less agitated if I am here.
There was a logistical issue in getting back here. My sister has forbidden me from driving at the moment as I am liable to get too upset to see straight. There are loads of friends (many of whom are commenting on this blog) whom I’m sure would be happy to drive me back to Worcester. But the Big Chill music festival is causing tailbacks of about an hour right past our house, so it would take an inordinate time to get to me from Malvern. Luckily our kind neighbour Maggie stepped in to help, and drove me back to the hospice. I do hope that the traffic has cleared somewhat for her to get back home.
I have spoken again to the medical staff here. They reassure me that Chris has not hurt himself in the fall. They have increased his sedation still further to settle him overnight. I hope he has a quiet night, and that we are both able to get some sleep.
By Gillian
I’ve spent all week at the hospice, from Monday morning continuously until this afternoon. Chris was so unstable, changing from hour to hour, that I did not feel it was reasonable to leave him. And until we’d heard what the consultant said, we didn’t know exactly what we were facing. Now we do…..
I’ve been staying in one of the family rooms the hospice has – a perfectly pleasant twin room with en-suite facilities, just down the corridor from his room (Chris started off last week in a 3-bed ward, but was moved to a single-occupancy room on Sunday afternoon after things started to go downhill rapidly).
Things have stabilised a bit this afternoon. Chris is quite heavily sedated, to prevent another fit, so is sleeping most of the time. It takes a huge effort for him to speak clearly. His vision and hearing are both very poor indeed. I can get through to him still, as he is so used to my voice, but other people struggle to communicate with him – he literally can’t hear them.
But the doctors do not anticipate another imminent crisis. They are adamant that I need some time away from sitting with him, to recharge my own batteries, and were quite happy that I should come home this afternoon so that I can get some sleep (huh! fat chance!) in my own bed. They have promised to phone if there is a problem. So I’ve come home with a load of his laundry to do, so that he has clean clothes for the weekend, and will go back in to see him tomorrow. My sister is coming to stay for the weekend, which will be a support for me.
Chris made such a huge effort to talk to both the consultants yesterday evening, but it seems to have taken a lot out of him. He had a very restless night which culminated in him falling out of bed and having another fit. This morning his vision and his hearing are both much worse. His coordination has also gone, so I had to feed him his breakfast as he can’t hold a spoon. I’ve spoken to the doctor who is going to increase his dose of midazolam which will protect against seizures.
By Gillian
This evening the consultant oncologist came to the hospice to discuss treatment options with us. Chris was alert, sitting in a chair, and able to follow and contribute to the conversation, which was great. The nurse and palliative care consultant were both amazed at how much more with it he was compared to this morning. Mind you, the effort exhausted him and he went to sleep as soon as the doctors had gone.
We discussed three options.
1. Brain surgery to remove the tumour. Technically possible but inadvisable as the primary tumour is very aggressive and Chris would most likely still be recovering from major surgery when the next crisis hit with a new secondary.
2. Radiotherapy to the brain. Clinically the evidence is that this is beneficial only in cases where the patient is responding so well to steroids that they have hardly any symptoms. Not the case here.
3. Palliative care to treat the symptoms, together with large doses of steroids to shrink the inflammation around the tumour.
We all agreed on option 3, and Chris was quite adamant that he did not want any more aggressive treatment. So steroids and palliative care it is.
The consultant was quite clear that this brain tumour is a “devastating set-back”. The median survival time with this type of brain tumour is twelve weeks, and his gut feeling is that we have significantly less than that. Both Chris and I are worried that this will drag on and on. I shall need to discuss care options with the hospice tomorrow, as I don’t know whether they can treat someone for weeks at a time, and I certainly can’t cope with him at home…..
By Gillian
Yesterday was, by current standards at least, a goodish day. Today is less good. Chris is in no pain, but he seems very confused. The nurses and I have to speak very slowly and clearly to him, or he can’t understand us. He is also having major difficulty talking. We are waiting for a visit from the consultant oncologist to decide what, if any, treatment is appropriate for the brain tumour. In the meantime I am taking comfort from the odd lucid five minutes, in between dozes. However, this is clearly the beginning of the end. The only major question is how long it will all take. Several weeks is the current best guess.
By Gillian
Chris has had a more comfortable day today. He has only been sick once, and the doctor is pleased with his response to the steroids. His vision is significantly better, as is his hearing, and he is able to follow and take part in (short) conversations. He is heavily sedated, largely to moderate the “hyper” effects of the steroids, so has spent most of the day dozing. But when he is awake, he is lucid which is a major improvement over Sunday.
Indeed, he was so much more himself that he spontaneously asked me to activate the power of attorney that I have over his finances. I have rung the solicitors and it is all in place.
I read out to him some of the comments on the blog, and he was very touched to know that you are all thinking of him.
