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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

A rather grotty day

By Gillian

Thanks to everyone who has commented here or spoken to me at work to hope that Chris will start feeling less grotty soon. We hope so too. He has been feeling sick pretty much all the time for the past week, and his anti-emetic drugs really aren’t working any more. He’s really struggling to keep food down at the moment – it keeps bouncing. And worse, he’s feeling too grotty to cook, so I’m back on kitchen duty which isn’t going to do his appetite much good.

The palliative care nurse phoned first thing this morning too see how Chris was doing. She then phoned back shortly afterward to say that she’d just spoken to our GP practice and asked them to prescribe yet another anti-emetic for Chris to try. She also confirmed that she’d booked us an appointment with the excellent palliative care consultant on Wednesday afternoon, shortly before we see the consultant oncologist.

Chris was due to go to the GP’s surgery this morning to have some blood tests done prior to the consultations tomorrow, so it was very convenient to pick up the new prescription at the same time. However, I was not convinced that he was safe to drive himself there – he was in quite a bad way, lying on the sofa half-asleep (he got hardly any sleep last night through a combination of nausea, a painful back, and – a new one today – sciatic pain). So I had to phone work and arrange at no notice to take the morning off on leave. Fortunately they are very understanding, and at least I had no meetings this morning.

That wasn’t the end of the saga though. We picked up the new prescription for the fifth (at least!) anti-emetic medicine that he’s been on, and took it over the road to the pharmacy. We’re both on first name terms with the pharmacist by now! He looked puzzled then concerned that not only did he not have the prescribed dose in stock, but he couldn’t even find it on the computer or in the BNF (the pharmacists’ “bible”). A few phone calls later he had established that it is an unlicensed dosage, available on a named-patient-only basis, but that one of his suppliers had some in stock and would courier it over for tomorrow. So it’s a bit disappointing that Chris can’t try it out tonight, but I’m impressed at the efforts the pharmacist has taken to track some down and get it too us as soon as possible.

20 07 2010 Gillian cancer Comments (6) Permalink

Post chemo week 8 status

What a week! I feel as though I have been vomiting all week, although I managed to avoid it on Friday morning, I have sacrificed my morning cup of tea every other day since Monday. I vomited twice this morning for good measure.

It was so bad that I phoned the palliative care nurse to ask for advice, and she recommended two courses of action. One was to take an extra Metoclopramide (anti-sickness) pill last thing at night, and the other was to make sure that I waited until after I had eaten before taking the painkillers, especially the Diclofenac. Neither of these courses of action have made much difference, except that on Friday evening I forgot to take my painkillers after dinner and suffered enormously during the night, as I was unable to sleep due to the pain in my back. It was really quite worrying, as I thought my situation had taken a sudden turn for the worse. Fortunately I remembered at 4:30AM that I had forgotten (!) my painkillers. I took them straight away, and was able to get four hours sleep that night. At the very least this episode tells me that I still need my painkillers.

I’ve extended the nurse’s advice and doubled the Metoclopramide dose. It’s now the same as it was at its peak. That has stopped me from feeling queasy during the day, and I hope it will prevent me from vomiting tomorrow morning. We shall see.

I have an appointment with the consultant this week, and I’ve asked to see the palliative care consultant too. Let’s hope we can get this cleared up.

18 07 2010 icyjumbo status Comments (4) Permalink

Murdered to Death

By Gillian

We’re determined to try to do interesting things this summer while we can, rather than sitting at home and feeling sorry for ourselves.  There is a very good local theatre in Malvern and we are making a point of going there once a month or so. Chris isn’t really up to going out in the evening at the moment as he gets tired so easily, but fortunately there is usually a Saturday matinee performance.

This afternoon we went to see “Murdered to Death”. That was an apt description of the plot in fact. It was a murder-mystery spoof, poking fun at the genre and was chock full of stereotyped characters and plot lines. So it was set in a 1930′s country house, with a mysterious beautiful woman, a retired colonel with the stiff upper lip, a dubious butler, the put-upon niece who expects to inherit everything, several secret affairs and people who aren’t what they seem, and to top it all (as if it couldn’t get any sillier) “Miss Joan Maples” an old biddy-cum-amateur sleuth who seems to attract murder wherever she goes.

It was billed in the local paper as being hilariously funny, but to be honest it wasn’t all that good. Too cliche-ridden by half, we thought. However, it was enjoyable and we did snigger a good few times. Certainly better than moping around at home.

17 07 2010 Gillian Day out Comments (0) Permalink

The sacrificial cup of tea

While I was receiving chemotherapy I found myself throwing up almost every morning. I learned not to take all my pills first thing, as I would inevitably lose them, or some part of them, but wouldn’t know how many or even whether I could take replacement pills. But at least the vomiting did stop me from feeling sick.

We — the palliative care team and I — worked on this for quite a while, and eventually settled on a regime of pills that stopped me both feeling sick and vomiting. The big potential downside, as far as I was concerned, was a little thing known as tardive dyskinesia, which Wikipedia says is “characterized by repetitive, involuntary, purposeless movements” and can be brought on by taking either Haloperidol (an anti-psychotic drug) or Metoclopramide (an anti-emetic) drug. The “tardive” part of the condition’s name means that the effects can come on even after you stop taking the drug. Scary. That’s why I wanted to cut down the number of Metoclopramide I was taking as soon as the chemotherapy finished. Indeed I was successful in reducing the dose from eight 10mg tablets per day down to three, which is the normal anti-emetic dose.

On Monday this week, however, the early morning vomiting started again. I’ve tried taking an extra Metoclopramide last thing at night in the hope that it will stop me from vomiting in the morning, but it hasn’t worked so far. I have a feeling I may well have to increase the dose still further, although I shall have to wait to discuss that with the palliative care team, probably next week now. My main worry, of course, is that this development means that the tumour is growing once again.

At least the sacrificial cup of tea is all that I lose, as I now know what is coming. I take the rest of my medication after breakfast, and am able to lead an almost normal life for the rest of the day.

15 07 2010 icyjumbo cancer Comments (2) Permalink

Post chemo week 7 status

The big event of the week for me was the radiotherapy to my back, while Gillian has been trying to keep her workload at a more sustainable level.

Gillian’s manic period at work reached a peak on Wednesday this week, but fortunately she was still able to accompany me to Cheltenham where I had my L1 vertebra irradiated with a palliative dose. Palliative radiotherapy is single-shot and tends to be more intense than curative doses, which come in much smaller daily doses. The L1 vertebra is right near my stomach, which probably explains why I was so sick on the way home (four or five times in a one hour journey), and afterwards (another five or so times that night). Indeed I was so sick that Gillian felt that she had to call the NHS out of hours service and ask/demand help. They arrived within the hour and gave me an injection which halted the vomiting, and allowed me to take a pain killer and finally go to sleep.

The following morning Gillian’s alarm didn’t go off when she wanted it to, which meant that she woke up nearly an hour later and rushed frantically through her morning routine, but did get out successfully, and managed to get through that final hectic day as well as she could.

My back has slowly been recovering all week, and I’m a lot better today than I was before the radiotherapy, although I believe there is still quite some improvement to come. For example, I was able to work for an hour in the kitchen this evening before the pain was too much, but I’m sure I’ll be able to do more next week, even if it’s not in the kitchen.

Now that Gillian’s workload is lighter, and my back is better, I’m hoping that we’ll be able to enjoy life a little more over the summer, starting with the upcoming week.

11 07 2010 icyjumbo status Comments (2) Permalink