A mammoth undertaking

It started with a very pretty little sparkling firework display while I was trying to get to sleep on Wednesday night after returning from the hospital. This replaced the ever-retreating bands of colour I normally see while I’m falling asleep with something a little more active. The display responded to things I heard, so it changed when I scratched my head, or when the music on the radio came on.

I couldn’t fall asleep, no matter how long I lay there. All the time the visions behind my eyelids grew more and more complex and engaging. Then they started being populated, and the actors played roles that I found witty and funny. I laughed out loud. It was fun, even though I couldn’t sleep.

Then the hallucinations started to disturb me a little. They weren’t unpleasant, but were no longer fun, and harder for me to banish. That was enough. I needed help, so I rang the number I had been given on leaving hospital. While I was talking to them, Gillian contributed the important detail that I had been manic ever since returning from the hospital. I was indeed very high, which is why I was finding life so much fun.

Drug induced psychosis

It turned out that I was having a psychotic episode, probably caused either by the steroids I was taking to control nausea, or by the morphine. I cut out both drugs, and over about the next 12 hours the symptoms faded. The replacement pain killers weren’t up to the job, so I had a dilemma. Should I ditch the new pain killer and go back to the morphine, which I knew worked but might make me psychotic again? Another call the the help line resolved that. It was almost certainly the steroids that caused the problem, so provided I were careful, and Gillian watched me like a hawk, we could slowly re-introduce the morphine.

And that’s where we are now. I have built up from very small oral doses of morphine and the pain is now almost under control. I have cut out the steroids, but left in the other anti-sickness tablets. I feel a little wobbly, but basically in control and much more stable.

I hope that by having described what happened to me, from the inside, it might help those who are searching for symptoms to understand what might actually be happening. It felt so right and good at first, but what followed was definitely not good. Much better to catch it sooner if possible.

As a bonus, the snow is thawing. This evening, things are looking up again.

By Gillian on behalf of Chris

We were hoping that Chris would be admitted to Cheltenham hospital on Sunday morning to start the chemotherapy. The consultant oncologist had written on his notes “MUST (underlined three times) be admitted on Sunday”. But when we phoned the hospital on Sunday morning, there were no beds available. We were told to phone back mid-afternoon, as there would “probably” be a bed coming free. I spent several hours clearing the car and drive of the remaining snow, we started the car, and checked it was running ok. But then the hospital rang back – Chris was definitely top of the waiting list, but they still didn’t have a spare bed – the oncology ward was full of emergency admissions. We should phone again 08:30 on Monday morning.

Overnight we had another 10cm of fresh snow and were snowed in again. But the hospital still didn’t have a bed free on Monday morning, so we weren’t going anywhere. By now, Chris’s back was getting extremely painful – we think it is the tumours in the lymph nodes near his spine pressing on his nerves. The pain killers we had access to weren’t keeping it under control, and there was no way we could get out to the doctors. So I got started on another few hours of digging out the car  – again with the help of our neighbours who have been splendid. Then at lunch time, the hospital phoned again to say that there was now a bed free, could he please come down to Cheltenham immediately. He’s there now, and will be there for at least two nights. They’ve sorted out some stronger pain management for him and he is a lot more comfortable. We expect the PICC line to be put in on Tuesday morning, with the chemothereapy starting that afternoon and overnight. However, there’s more snow forecast here for tomorrow night, so they may have to send him home in an ambulance if I can’t get out to pick him up.

Eight inches of snow fell overnight, quite effectively blocking us in. This was a nuisance because I was supposed to be meeting the oncologist today. I phoned the hospital and asked whether the meeting could be done over the phone, and yippee! it could.

About an hour and a half later, he phoned and we had a useful conversation. First, he confirmed that my reaction to the stent’s insertion was normal, which is comforting to say the least. My gut has seized up — a common reaction to its being handled, I’m told — and as a result I’m on a liquid diet until it starts moving again. There have been, …, signs, shall we say, that my poor old gut is beginning to go back to more normal operation.

Second, he said that he wouldn’t start the chemotherapy until after the jaundice was cleared, as not doing so was likely to make me very ill indeed. That’s good, because it means that the start of my treatment probably won’t be delayed by the weather, as I had feared. I expect to go in overnight on Sunday night for my first chemo, provided my blood counts are in the right region. Oh, and the kidney function test results were back: they are working well. Phew!

The final question is how were we going to get out with all that snow on the ground. That one was solved by Gillian and two extremely kind neighbours, Elspeth and her son Will, who all shovelled snow for about two hours to clear it enough that we could get the car out. I can’t begin to express my gratitude to Elspeth and Will, who have been the best of good neighbours. And it seemed so wrong to see Gillian, who is half my size, doing all the hard physical labour while I was tucked up in a warm bed. I couldn’t have done it, so I am hugely grateful to her for stepping up. I hope she’s not too stiff tomorrow, but there’s always massage…

Today was the hectic first day of what will probably turn out to be a busy week. Two appointments at the specialist chemo unit, one was for a kidney function test, which I need to pass if I am to go onto the cisplatin part of ECF. The second appointment was a pre-chemo meeting to go over the drug regimen, let me know what the effects and side-effects were likely to be, and to advise me on what to look out for. For example, I’ll be particularly susceptible to infection at some points in the cycle, and any coughs, colds, sore throats, etc., or a temperature more than 38C are reasons to call the specialist team urgently. Worrying! There’s a lot to take in, but Gillian was with me taking notes, and we were given a huge pile of pamphlets too.

It was a huge help having Gillian there, as I seemed to have fallen through the cracks. After waiting an hour beyond the appointment time, Gillian went in search of someone who would help. Andrea was that soeone, and as she swung into action things started to happen. It turned out that my appointment had been made with someone who was on leave all that week. Never mind, there are procedures, and the first alternative ought to have picked it up, but she was sick. The second alternative was busy, so Andrea, with some robust backing from the oncologist, found a fourth person, Ian, who did a sterling job at the last minute. Nevertheless, it was a long and tiring day, and I needed a longer than normal nap this afternoon.

Tomorrow I have an early morning appointment to have an endoscopy which I hope will cure the obstructive jaundice, which I believe has been responsible for me feeling tired and nauseous, so I will be very glad to see the back of it, no matter how much I dislike endoscopies. (He opines from the great height of his vast experience of … one endoscopy!)

On Wednesday I meet the oncologist again. I’m not yet sure what this will be for. I’m hoping that we’re getting close to the insertion of the PICC line, but I don’t think that will take place then, so a fifth appointment this week looks likely.

I think we’re still hoping to start the chemotherapy proper on Friday, which will involve an overnight stay at the specialist centre.

Things seem to be moving. I get the strong impression that Christmas and New Year is just about the worst time to try to get a complicated new treatment started. There are wheels within wheels to get moving, and even in these days of electronic communications, information doesn’t move quite as freely and easily as you might imagine. But there is a huge amount of goodwill and effort by people working extremely hard under difficult circumstances, and for that I am more grateful than I can possibly say.