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Changed waiting rooms

When I first started going to Worcester to get my bag changed, the chemotherapy patients had their own waiting room deep inside the suite that treats both haematology and chemotherapy patients. The two groups of patients both checked in with a single receptionist, and then the haematology patients waited in the main waiting room, whose chairs were arranged in widely spaced rows facing each other — so people could chat if they wanted to. There was a television in the corner of the room, to entertain those who didn’t want to read or chat.

The chemotherapy patients’ waiting room was quite a bit smaller, and its walls were lined with chairs, leaving a gap in the middle for a table that usually held a basket full of biscuits, and some more magazines. The atmosphere tended most weeks to be very convivial. We would all ask each other how we were getting on, receiving congratulations or sympathy dependent on our answers. In the corner was a kettle, and tea- and coffee-making facilities. For something that had the prospect of being so grim as receiving chemotherapy, it was really quite a happy place.

Two weeks ago, that all changed. In an effort to increase the size of the treatment area, our waiting room was converted into a haematology treatment room, all the chairs were moved from our waiting room into the main one, and in order to squeeze them all in, the chairs were rearranged into tightly spaced rows, all facing the receptionist, as though she were on a stage. In fact, that was exactly how she felt about it, and has since lowered her chair so that she doesn’t feel stared at by all the waiting patients. I do feel sorry for her.

But most of all, I feel sorry for all the patients. Being in rows, all facing the same way has removed all sense of conviviality. It’s really hard for people to talk to each other, and if you feel the need to get up and wander around, perhaps to ease an aching back, it’s now a lot more difficult. It seems such a shame to have thrown away all the benefits that the old arrangement had. I can see that there are clinical and financial benefits in having a larger treatment area, but all the same, it’s really tough on those of us who have lost out. And I include the haematology patients in that group too.

Although our National Health Service gives us medical care that is free at the point of use, and I am extremely impressed with the medical staff both their behaviour and their attitude, there can come the occasional time when resource limitations really bite. This is definitely one of those times.

19 05 2010 icyjumbo cancer
invective Comments (2) Permalink

Cycle 5 week 4 status

The main news of the week is that it seems likely that I have finished my chemotherapy, after five cycles instead of six. The decision taken on Wednesday was actually to take a fortnight’s break from the chemotherapy, including the 5-FU in the bag, and to wait until after we see the results of a CT scan before we decide how we’re going to proceed. The toxicity of the chemicals was beginning to have a serious effect on me, so I’m fairly sure we have reached the point of diminished returns. Whatever the final decision, it has been a real relief not to be permanently tied to a pump with 5-FU in it. Even if there were no other improvements in my life at the moment, that single one would be worth a huge cheer, but other things have improved too.

For example, the infection that was causing me to experience wild temperature fluctuations — shivering in the morning and over-heated in the afternoon — seems finally to have been put to bed with a course of powerful intravenous antibiotics, followed by a short course of pills. I still feel the cold, but only in the same way I have done for months. I can cope with that simply by wearing warmer clothes than other people, which is easy.

The diclofenac that was prescribed to take the place of ibuprofen is also continuing to do a good job controlling my back pain, which itself has slowly decreased during the week. Last week I had to sleep using a foam bed wedge, lying all night on my back. Last night I was able to sleep directly on the mattress for most of the night, sometimes on my back and other times on my front facing one side or the other. It may seem inconsequential, but the ability to choose between two sleeping positions is an absolute luxury when I have recently been restricted to just one sleeping position. More evidence of the improvement in my back is that I was able to help Gillian in assembling a bookcase that we bought on Friday to cope with the overflowing piles of books that are beginning to litter the living room around my chair.

My back does still need to be looked after carefully, however, and I still spend a couple of hours per day on the sofa, which relieves it from any strain that it might have suffered. As I’ve been able to do more and more — laundry and cooking are the most prominent tasks that I’ve been able to take up again — it has become important for me to know when and how to rest my back, and the sofa has proved ideal for that.

Finally, and almost the most important for me, I’ve stopped shaving my head. I know that it may be a premature decision, but I really dislike being bald (no matter how many times I’m told that it suits me). My hair is now just ove a millimetre long, and I can barely resist running my palm over the stubble, just to remind myself that I have hair. It’s a lovely feeling.

16 05 2010 icyjumbo status Comments (5) Permalink

Dealing with the hospital pharmacy

By Gillian

Last week, our main goal of the weekly hospital consultation was to sort out a better pain management regime.  In practice, that got usurped by Chris being neutropenic and hospitalised for four nights so we never got around to blogging about the original issue.

We had emailed our key worker over the Bank Holiday weekend to let her know that  we needed help with pain relief, and she had tried to set us up an appointment with the Palliative Care consultant, who had been extremely helpful previously in sorting out Chris’s nausea. But the consultant was on leave all that week, so rather than waiting for her to get back we were given an appointment with the palliative care registrar who works closely with the consultant.

We went over the symptoms with her in great detail, and she asked a lot of questions to fully understand Chris’s situation. He explained that the morphine was simply not touching his back pain, merely making him constipated and drowsy. The ibuprofen, on the other hand, worked really well for 18 hours per day, but just did not last long enough to keep him pain free for 24 hours.

Although in some cases it is possible to go above the recommended maximum dose of ibuprofen, the registrar was very unwilling to let Chris do so for fear of kidney damage. Instead she prescribed diclofenac, another Non-Steroidal Anti-Inflammatory. She also suggested moving from morphine onto a different but related opiate, oxycodone, as a top-up for break-through pain (i.e. in between the doses of diclofenac, to be taken as and when Chris requires it).

Chris and I have worked out a procedure for dealing with the hospital pharmacy. They are usually extremely busy between 11am and 2pm (invariably the time period that we want to use them) because as well as all the out-patients like us, they are also making up the prescriptions for all the in-patients following the doctors’ morning ward rounds. There is usually a wait of 25-35 minutes minimum, on extremely uncomfortable chairs. So I take Chris’s medical exemption certificate (giving him free prescriptions since he is a cancer patient) and go to the pharmacy with the prescription, leaving him upstairs in the oncology clinic waiting to have his arm dressed and bag changed. It saves time overall and means that he doesn’t have to risk his back on the pharmacy seats.

This time I went straight down to the pharmacy, and as I got there I recognised the palliative care registrar we had just been talking to. She said that she thought there might be a problem with the prescription as there are extra safeguards on controlled drugs, and she wanted to come to the pharmacy with me to make sure that things went smoothly.  I’ve spent hours sitting waiting in that pharmacy, and I’ve seen quite a few patients turned away due to problems with incorrectly filled in prescriptions.

I queued up to hand in my prescription, and when I did so the registrar piped up “Actually, I’m the doctor that prescribed this”. The issue was that the pharmacy will only dispense controlled drugs (e.g. opiates) on a hand-written prescription form, and in particular the name and address of the patient must be hand-written by the prescribing doctor. In this case she had automatically used one of the pre-printed labels that was in Chris’s case notes. A senior pharmacist was called over, who agreed that if the registrar signed across the label then that would be acceptable. There was also a potential issue that Chris has been prescribed above the normal maximum dose of one of the anti-emetics, and every time I go to pick up a repeat prescription the pharmacy question it. So the registrar signed against that item too, to show that she really meant it.

I thought it was really kind of her to anticipate a problem on the prescription form, and to meet me at the pharmacy to resolve it personally. We really do have a very caring medical team.

14 05 2010 Gillian cancer Comments (6) Permalink

No more chemotherapy?

I went to Worcester for my bag change today, and to decide whether or not I was going to go in to Cheltenham for the sixth cycle. There was a long delay because only the registrar was there and the consultant was dealing with a problem elsewhere. We waited for nearly an hour on one of the most uncomfortable chairs I have ever had the misfortune of sitting in, until my back had become really painful. At last the consultant reappeared, and it was my turn to go in to see him.

I had been feeling more and more peculiar over the preceding hour and a quarter, and reported that fact to the consultant. He was already of the opinion that my next chemotherapy cycle should be delayed by at least a week, which concerned us quite a lot as it would interfere with a holiday that we had booked earlier in the year. (We did book it for three weeks after we expected all six chemotherapy cycles to be completed, but there have been a number of delays which have eaten away all the buffer space.) After a short discussion the consultant decided that I wouldn’t receive the chemotherapy this week, not even the changed bag. The accumulated toxicity of the treatments has begun to hit me really hard, and there is a good chance that any extra time that the sixth treatment might have bought will be more than offset by the toxic effects of the drugs. There is now a real possibility that I will have no more chemo, which will be a huge relief.

In the first few cycles I was coping really quite well. Granted, I felt a little sick during the early part of the cycle, but once that had passed I could live an almost normal life, except for the purdah weeks. However, as you can tell, the last couple of cycles have treated me really quite roughly, and it is now time to decide whether any more treatment is justified. The best way to do that is to look at the results of a third CT scan, which has been requested, but not yet scheduled. I hope that it will have taken place before I see the consultant again in two weeks time. With luck, the tumour will be shrunk enough that there is no real benefit in adding any more treatment to it.

12 05 2010 icyjumbo cancer Comments (8) Permalink

Blood transfusion

I’ve had two blood transfusions in the last two weeks, and I thought it might be interesting to describe them and their effects. On both occasions I was given two units of red blood cells to counteract a low blood count, whose effects were mostly that I had no energy at all and was constantly tired.

Before the transfusion started I was asked whether I had had one before, and on the second occasion I was then asked if I’d had any adverse reaction to it. In fact I had no bad reactions either time, which is a relief. I was told to let the nursing staff know if I had any sort of reaction at all, including, but not limited to shortness of breath or tingling fingers or scalp. It was a little worrying at the time, but I think they were being very careful indeed.

Each unit was delivered through a pumped drip, over a period of between one and a half and two hours. I was surprised that it would take so long to deliver such a relatively small amount, i.e. 280 ml or about half a pint, but it seems that this is normal. Occasionally they’ll deliver a unit in one hour, but longer is more normal.

During the first transfusion I did find that the fingers on my left hand swelled quite a lot, but I had been on a saline drip overnight that had delivered 2 litres of liquid into my bloodstream, so it really wasn’t surprising that I was a little bloated at the end of all that. The second transusion caused no such problems.

Afterwards I felt better almost immediately. I was a lot more alert, and felt much more like getting up and doing things. Gillian said that my colour had also improved. In fact, after the first transfusion my colour was really quite high for about a day. The effects of the first transfusion lasted about a week and were probably countered somewhat by the rough time I had during the last week. I’m still feeling the positive effects of the second transfusion, although perhaps not as strongly as I did yesterday, which was such a productive day. If you’re feeling low and without energy, then a transfusion is highly to be recommended. It did me a power of good.

11 05 2010 icyjumbo cancer Comments (15) Permalink

Cycle 5 week 3 status

This has been a rough week. I have felt unwell for most of it, with temperature fluctuations that left me alternately shivering and uncomfortably warm. On Wednesday the consultant decided that I had an infection, and that it needed hospital treatment, so Gillian took me down to Cheltenham. I had had a blood test in Worcester while seeing the consultant, and I’d taken the results with me to show the staff at the hospital. Nevertheless, they decided that they would do their own tests so that they were accessible on their own systems. It was clear that I was extremely unwell, with my Neutrophil levels now at 0.74, significantly below 1.0, the level which is regarded as dangerous. I was admitted, not to a ward, but to an isolated room for the next four days.

During the next two days my Neutrophil levels continued to fall, staying first at 0.74 one day, and then falling to 0.5 on the following day. I was being treated with intravenous antibiotics called Tasocine and Gentomycin. The Gentomycin was given in a bag through the drip, but the Tasocine was injected straight into the line. It was really weird because within about five seconds of the injection starting I started to smell a very strong hydrocarbon smell. That smell was clearly an illusion as the nurse giving the injection was unable to smell it too. In fact she said that most patients reported a metallic taste in their mouths, and she had only ever heard of one other person who smelt something instead of tasting it. Most peculiar.

As there was very little to do in hospital, my reading matter soon ran out, and I was reduced to watching television. Fortunately they had a rather nice set, with Freeview, so I was able to watch Film 4, which was better than watching daytime TV. But I must confess to watching a couple of episodes of Countdown, even though I was unable to compete with the contestants as well as “normally”.

On Friday evening Gillian was brought to Cheltenham by a friend, and brought with her some much needed books and several changes of clothes; I had packed enough clothes for only two days, as that was what I had been led to expect. She also brought my laptop, so I was able to catch up with some of my online tasks. The next day I was due to go home after a blood transfusion, but when my temperature was taken while Gillian was there waiting for me, it seemed to be a little high (37.7°C) so a doctor was consulted and eventually she advised that it would be better to continue the IV antibiotics for another night. By this time I was no longer neutropenic so I was moved onto a ward, where there was no TV, nor any Internet access. Thank goodness I now had some more reading matter! On Sunday the doctors finally agreed that it was safe for me to go home, and I left in the middle of the afternoon, although I’ve been sent away with a few more pills and potions: Augmentin is a strong anti-biotic; and I have magnesium hydroxide and potassium supplements to take as well.

Now that I’m home, I’ve had a very good day. It’s been essentially pain free, and I’ve got lots of things done that I just haven’t had the energy for: photos for some eBay auctions; editing a couple of audiobook sections for LibriVox; shopping; cooking; and laundry. And this evening we listened to an episode of I’m Sorry I Haven’t A Clue on tape, a spontaneous loan from another friend. What fun!

10 05 2010 icyjumbo cancer Comments Off on Cycle 5 week 3 status Permalink

Brief status update

I’m home from hospital at last. I’ve been given some pretty strong antibiotics (Augmentin) and some mineral supplements as some of my blood numbers were a little low, and I’ve been on intravenous antibiotics while I was in hospital, so I’m quite tired now. I’ll blog more fully about my status tomorrow, when I shall hopefully be a little fresher. However, it’s really good to be home, and able to talk with Gillian whenever I want to.

09 05 2010 icyjumbo cancer Comments (5) Permalink

Frustratingly, still in hospital

By Gillian

We were expecting Chris to be let out of hospital today, as he’s feeling much better and his white cell count has an upward trend at last. He had another blood transfusion, which was due to finish around 6pm, so he asked me to turn up then to take him home. I did so, and  we packed his bags ready to leave. The nurse came in to do his final “observations” before discharge (temperature, blood pressure etc) and just our luck his temperature spiked again. So they took yet more blood samples and the duty doctor decided it would be safer to keep him in for another night. At least he has clean clothes and books to read. We’re both very frustrated that he can’t come home yet, though we agree that it’s much better to be safe than sorry.

08 05 2010 Gillian cancer Comments (2) Permalink

From hospital

Gillian and a friend drove down to the hospital, bringing my laptop, some books, and several changes of clothes last night. Unfortunately the hospital is closed to visitors, because of an outbreak of diarrhoea and vomiting virus on several of the wards — not mine, thank goodness — so they weren’t able to stay for very long. We did manage a short conversation through the open door, but it’s not very satisfactory with me in my room and them standing in the corridor.

As Gillian said in her post, I was suffering quite large temperature fluctuations, which the doctors thought were due to an infection. I’ve been treated with two intravenous antibiotics, and those fluctuations seem to have calmed down.

The main reason that I’m being kept in, however, is because my neurtrophil count is low. Until yesterday, it was falling, which made me very susceptible to infections, so hospital really was the safest place for me to be. I’ve been told that I can go home again when that neutrophil count goes back up again, even if it is still at a low absolute level. That will be a relief. It’s been really quite boring sitting here with virtually nothing to read, and only a choice of an armchair or my bed to sit in.

The last thing I’d like to do in this post is to thank all the people who’ve sent their good wishes my way. I’ve replied to all the comments left on Gillian’s post, but there have been others who have phoned or wished me well through other means, and I’d like everyone to know that I’m grateful. Thank you, all.

08 05 2010 icyjumbo cancer Comments (4) Permalink

Hospitalised!

By Gillian

Yesterday, we went to Worcester hospital for the usual weekly bag change and routine discussion with the consultant oncologist, and ended the day with Chris being admitted to Cheltenham hospital and put in an isolation ward with no visitors allowed. Not quite how we had expected the day to pan out!

It is the middle week of the chemo cycle, when Chris’s immune system is most compromised. For the past few days his temperature has been fluctuating considerably. It never got to the threshold of 38 degrees where I’m instructed to drop everything and phone the chemotherapy helpline, and he didn’t feel too grotty, so I wasn’t particularly worried. But the consultant took a rather different view. It was clear that Chris was fighting off an infection, but the question was whether his immune system was strong enough to do so without help. So Chris had some  blood samples taken and we were asked to wait at the hospital while the lab analysed them. They also did the usual tests on him – blood pressure, temperature, etc.  Just our luck, his temperature hit 38 degrees when the nurse took the measurement – a clear warning sign of an infection. Then the lab results came back.  The answer was definitive – Chris was neutropenic, that is he was at greatly increased risk of infection with a very low white cell count.

The consultant decided that he would take no chances, and that it was probably unsafe to send Chris home with me. That was  a good call, as I have come down with a cold & sore throat today which would most definitely do Chris no good at all. Instead we called in at home to collect the “grab bag” we keep packed and ready, and I drove him down to Cheltenham hospital, arriving there around 7pm. The ward was full, but the consultant had already phoned the ward doctor to instruct him that Chris must be admitted, even if his temperature had dropped back closer to normal. It sounds like a whole lot of juggling of beds went on behind the scenes, and Chris was finally put in a single room on the isolation wing at about 3 o’clock this morning.

The regime sounds pretty strict. He’s allowed no visitors, not even me (in fact probably especially not me while I have a sore throat etc). He’s on a restricted diet, with no eggs, pate, soft cheese, sandwiches, un-peeled fruit etc. Hygiene is paramount, and he has to use mouthwashes after brushing his teeth to keep his mouth disinfected.  He’s on a sequence of drips, including several doses of intravenous antibiotics. He’s not allowed in the day room, but has to stay in his single en-suite room. There is a TV, but he’s running out of books to read and is getting pretty bored. There is a (free!) telephone which he can use, which is a real life-line. And we don’t know how long he will have to stay there – it will be for as long as it takes to get his white blood cell count up to a state where he has a functioning immune system. So possibly the whole weekend.

06 05 2010 Gillian cancer Comments (15) Permalink