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Confirmed scan results

By Gillian
I now have a copy of the scan report which was faxed from the hospital to the hospice. Chris has a new secondary tumour in the left cerebellar hemisphere. This is very likely to be the cause of the dizziness, unsteadiness and nausea that he has been experiencing. It is also probable that pressure from the tumour on the surrounding brain is the cause of his severe visual disturbance (basically, he has not been able to see clearly since Saturday).

The main treatment option is steroids. He has been on those since last night and I have seen a marginal but definite improvement since then. He is much more himself and knows who I am. Phew! He spends most of the time dozing due to the sedative side effects of many of the drugs, and is not currently well enough for visitors.

The consultant oncologist will call in on Wednesday afternoon to see us after the end of his Worcester clinic. But I understand that he is surprised by the rapid progression of the disease, considering that Chris was well enough to go on holiday in June. Apparently, such rapid disease progression is associated with a poor prognosis for subsequent radiotherapy, so it is unlikely that will be a preferred option.

So steroids and palliative care it is. At least Chris is comfortable here. He seems to be making progress on the steroids, and they will review that at the end of the week. It seems as though he could be here some time…..

02 08 2010 Gillian cancer Comments (9) Permalink

Preliminary scan results – Bad news.

By Gillian from the hospice

I spoke to one of the doctors here this morning. The scan report is not ready yet. But following yesterday’s rough day they have taken a sneak preview at the raw scan. The preliminary diagnosis is a secondary brain tumour at the back of the skull. That would explain the neck ache, slurred speech and disturbed vision that he has had for the past few days.

Treatment options are limited. Steroids to reduce the swelling is the main choice. They started him on that last night and he seems a little less confused today. I have asked for a prognosis and have not been given one yet, although it was suggested that I “prepare for a serious conversation with work”.

02 08 2010 icyjumbo cancer Comments (11) Permalink

Update from hospice day 7

By Gillian (using Christopher’s iPad at the hospice)
I have been here all day and it has been quite a gruelling day altogether. There has been a step-change for the worse I’m afraid.

He had a fit this morning – very like the one in January and again on the train, and collapsed on the floor. Fortunately I caught him on the way down. I bellowed for the nurses who were there within seconds, brought him round and got him back into bed. He’s been drifting in an out of consciousness all the rest of the day, though he was a bit more lucid and knew who I was when I finally decided he was fit to leave for the evening.

I will return tomorrow to talk to the consultant about the scan result, and to see what he suggests doing to improve things.

01 08 2010 icyjumbo cancer Comments (3) Permalink

Some respite for us both

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.

30 07 2010 Gillian cancer Comments (8) Permalink

Hospice update, day 4

By Gillian

When I got to the hospice this afternoon to see Chris, I found him being given a back, shoulder and neck massage by one of the aromatherapists. I had to give a wry smile, as he’s usually very very sceptical about complementary therapists. I find a regular massage essential to keep my shoulders from completely seizing up with stress, but he’s never been keen. However, he’s spent so long lying down over the past week that his back has got really stiff and he actually asked to be referred for a massage.

I thought he looked a little bit better today. He’s still throwing up however – indeed he did so while I was there – and is hardly eating anything. He says that he just can’t face anything savoury, so seems to be living on ice-cream and poached fruit. But he did spend some of my visit sitting in a chair rather than lying in bed, which is a definite step forward.

The good news is that the hospital has been able to reschedule his scan as an emergency. He’ll be having a full-body scan tomorrow morning, so we should get the results early next week. That should give the doctors some clues as to what’s going on.

29 07 2010 Gillian cancer Comments (3) Permalink

Sunset yellow vomit

By Gillian

Those of a squeamish disposition should scroll down to the final paragraph for the status update!

One of the more surreal parts of the whole hideous weekend was that when Christopher threw up, the vomit was usually a bright yellow. And I mean BRIGHT yellow. Almost day-glow in fact. Which was odd because he’d hardly eaten anything, and certainly nothing with any E-numbers or food colourings in.

It turned out to be a side-effect of the new laxative he’s on, which is meant to counter-act the bunging-up effects of the opiates. It contains dantron which is a synonym for 1,8-Dihydroxyanthraquinone, a member of the anthraquinone dye family. We had an interesting chat with our pharmacist about it when we picked up the prescription. Apparently, it was used as a dye-stuff during the War, and all the workers in the factory making it came down with diarrhoea! After the War some enterprising person decided to exploit that and market it as a laxative. It was a very successful product until it was realised that (in high doses at least) it is carcinogenic in rats. So now it is only licensed for use as a laxative in terminally-ill cancer patients, presumably on the grounds that a small risk of another tumour is neither here-nor-there in the grand scheme of things if you have advanced cancer already.

Welcome back to the squeamish for a quick status update. I visited Chris at the hospice again this afternoon. He’s still vomiting and unable to eat anything, but the pain is now under control. He was awake the whole time I was there, which is an improvement over yesterday. He still feels really ghastly and has absolutely no energy to do anything. Even talking to me was an effort. But he is clearly in good hands and the medical team are working to get his scheduled scans brought forward so that they can see if there is an organic cause for the vomiting. I think it’s going to be quite a long haul to get on top of this one.

28 07 2010 Gillian cancer Comments (3) Permalink

Hospice update, day 2

By Gillian

I went to the hospice this afternoon to see how Chris was doing. He was asleep most of the time I was there, so it was a good job I’d taken a book with me. They’ve put him on a continuous pump of pain-killer and anti-emetic drugs, to keep a more or less constant level of drug action in his body. That seems to be beginning to work – after a really bad night last night with multiple vomiting episodes, he has only thrown up twice today so far. He tells me that he’s feeling considerably better than yesterday, although that was from an admittedly very low baseline. He’s still very tired and wobbly.

One strange symptom which is puzzling his doctors is that his speech is slurred. It sounds like he’s drunk all the time. This started happening on Thursday or Friday last week. I think they are planning on doing another brain scan to see if there is a tumour causing that, though I suppose it could also be a side-effect of some of the medication he’s on.

I buttonholed the doctor before I left this afternoon and asked what his plans were. They want to take things slowly and only make one change at a time, giving time to evaluate the effects before making the next change. As a scientist I can only approve of that approach, though it does mean Chris will be in the hospice for at least one week and quite possibly two.

27 07 2010 Gillian cancer Comments (8) Permalink

Admitted to the hospice

By Gillian

We’ve had a truly dreadful weekend. Chris has had uncontrollable vomiting all weekend – he couldn’t keep anything down, not even water or his pills, so the pain was getting bad too, and he was getting very weak from lack of food and drink. Of all the weekends my sister could have chosen to come for a visit, she really picked an eventful one! However, she was able to rearrange her work commitments today to stay over last night and help me, which was great.

Yesterday I phoned the hospice for advice and was called back by their on-call doctor, who was helpful and very reassuring. She said that Chris ideally should go into the hospice for a period of monitoring and review, to get the symptoms under control. However, they were unable to handle new admissions at the weekend, so we would need to tough it out with the help of the District Nursing team until today (Monday).

So Chris stayed in bed all day yesterday.  I called out the District Nurses three times, the first twice (lunch time and early evening) to give Chris an anti-emetic injection, and the third at bed time to give him both a shot of morphine and a different anti-emetic injection since the first two clearly had not worked. I talked it over with them, and they said that they too thought he should be in the hospice, and one of the nurses said she would speak to our key-worker there in the morning.

This morning the district nurse phoned three times to check on progress and plans. I also spoke to our GP and discussed what our options were. She too was of the opinion that the hospice was the best option, though she also proposed a home-nursing alternative if there were no beds available. I was reluctant to go for the latter (though if there were no beds there would be no choice) as I was at my wits’ end dealing with him and badly wanted the professionals to take over.

Fortunately, I was phoned by the hospice mid-morning and told that they did indeed have a bed free, and would admit him immediately. Then it was just a case of how to get him there. Since he was still so weak and nauseous whenever he raised his head, the hospice admissions and I decided that the best thing was to get him there by ambulance so he could lie down. My sister and I followed behind in her car, with a hastily-packed suitcase of clothes for him.

We’ve settled him into the hospice, in a pleasant airy room of three beds. He’s next to the window, with a view out over the duck pond. I had a long chat with the doctor who will be in charge of him, and she seemed pretty confident that they would be able to get his symptoms under control and send him home in a better state. I expect him to be there for at least 48 hours and probably for the whole week, depending on the progress they make.

26 07 2010 Gillian cancer Comments (9) Permalink

A false dawn

By Gillian

When Chris posted last on Thursday afternoon, things were looking up and he was feeling quite a bit better. Unfortunately, that didn’t last. He threw up Thursday dinner, Friday breakfast and dinner, and breakfast and mid-afternoon tea today. He’s spent almost all day today in bed feeling ghastly, though he did get up at 7:30pm (and promptly threw up of course) and had a tiny amount of the lamb casserole, jacket potato and braised red cabbage that I had cooked. That was two hours ago and he hasn’t thrown it up yet, so I’m hopeful he’ll be able to keep it down.

My sister is here this weekend, on her way back from visiting my Gran who was 90 years old yesterday. Unfortunately, there was absolutely no way that Chris and I could go too, as he is far too ill to travel. If he doesn’t start feeling a bit better tomorrow, I think I’ll have to phone the hospice for advice. I hope we’ll be able to hang on until Monday when our regular team will be on duty at Worcester hospital. Why do things always get worse over a weekend, when one has to rely on the out-of-hours service?

24 07 2010 Gillian cancer Comments (10) Permalink

Visiting the consultants

Yesterday I saw the palliative care consultant, and was scheduled to see the oncology consultant. I spent a long time with the palliative care consultant, and by the end of the meeting it really wasn’t necessary to see the oncology consultant, as we had covered all my signs and symptoms in the first meeting.

The consultant seemed most concerned about the daily vomiting, and we spent most of our time discussing this before settling on a new approach. I’ll be reducing the Metoclopramide dose back to 10mg three times per day, and replacing the night time dose with 6mg Levomepromazine. Apparently the new drug acts on one pathway that no other drug does, so it may be of some use.

Next we turned to improving the pain management. First, I had noticed that my prescription for Diclofenac was now 50mg twice per day, and I was sure it was 75mg at first. Somehow something had got mistranscribed at the GP Surgery, and it turned out that I was right. Worse, the 50mg dose wasn’t a slow release version of the drug, so it was even less useful.

Second, the consultant seemed to think that I was too tolerant of pain, and should be more willing to tackle breakthrough pain by using the OxyNorm liquid. It’s true that I have been somewhat reluctant to do so, so I promised to try harder over the next few weeks not to put up with any pain at all. Indeed, I know perfectly well that pain is a signal that something is wrong, and it is intended that it should be got rid of, preferably by getting rid of the pain-causing agent. In my case, and that of most cancer sufferers, that’s not an option, so we take the second course, which is to take pain killers. Killing the pain completely is a really good way to improve quality of life. It’s one thing to know this intellectually, but another to put it into practice, I have found. However, I will try harder. I shall also be taking 10mg OxyContin twice per day, and splitting my dose of Omeprazole to 20mg twice per day, just before taking the Diclofenac. Complicated, I know, but it all makes sense.

Finally, it was agreed that a scan would be needed to try to determine why I’m being so sick and getting so much pain. That was scheduled by the oncology SHO at the end of the afternoon, and I expect to receive a letter telling me when it will be in the next few days.

Last night my appetite was much improved, without even changing the drugs regime yet. Strange, but true. I slept much better last night than I have done recently, probably due in part to the improved pain killing regime. This morning I woke up and didn’t feel sick for the first time in ten days or more, and thought that we had done the trick. But the feeling didn’t last as I lost my sacrificial cup of tea as soon as I had drunk it — 40 minutes after taking my morning pills, so I hope they’ll have had enough time to get into my blood stream. I’ve split my morning and evening pill taking into before- and after-meal pills, and the pain killers are in the after-meal group. Those I kept down successfully today. I’ve eaten and drunk more today than in the past few days, so to that extent the new anti-emetic seems to be working. It’ll all be news for when the palliative care nurse phones me tomorrow to find out how things are going.

22 07 2010 icyjumbo status Comments (6) Permalink