A mammoth undertaking

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.

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
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.

By Gillian

This stay in the hospice has given us both a bit of a break. Chris is being professionally nursed, his condition monitored and his medication adjusted, in remarkably pleasant and peaceful surroundings, and I am having some welcome respite from being totally responsible for him. Much as I love him, I feel as if I’ve been permanently “on duty” for the last seven months, needing to be alert to deal with problems any time of the day or night. And it’s exhausting.

I’m  sleeping marginally better than last week, because I don’t have to sleep with one ear open for him throwing up. And today I was able to go to a meeting at our company headquarters to brief my customer on progress on the big bid I’m working on – which I could not possibly have considered doing if he was being this ill at home.  So I felt able to pull my weight at work, which is important to me. A colleague picked me up from home  this morning, and Chris actually phoned me from the hospice to check I was up and dressed, so that I didn’t repeat last time’s near-disaster. That was really thoughtful of him.

He had a CT-scan today, from the top of his head to the  tops of his legs. We should get the results next week, and we hope that will provide something for the clinicians to work on to get on top of both the symptoms and the cause.