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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.

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.

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.

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.

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.

The morning after the night before…..

By Gillian

So Tuesday night was pretty grotty. The next day, Wednesday, I was due to pitch some ideas to one of our major customers at our company headquarters, which is several hours away down the motorway.  It was an important meeting, on a project I have been leading for the last few years, and I badly wanted to be there.

However, I was concerned whether it was either safe or wise to leave Chris on his own at home when he was being so sick. My first thought was to ask one of our friends to “husband sit” him during the day. But Chris was determined that was unnecessary – he would be fine. I was still bothered though that if anything went wrong I would be too far away to help out. So I took inspiration from our “lone working policy” at work and arranged that Chris would phone our friend Richard every few hours during the day to say that he was OK. If he didn’t make the call, Richard would phone him, and if there was no answer then Richard would drive round and investigate further. That worked well – it might have been a bit paranoid of me, but I wanted to be able to concentrate on presenting my brief, rather than worrying what was going on at home. Thanks Richard!

The arrangement for getting to the meeting was that several of us would travel together, and two of my colleagues (including my boss) who were sharing a car kindly agreed to pick me up from home on the way. We had to be at the meeting by 09:45, which meant a pick-up just after 7am. So I set my alarm for 6 o’clock, giving reasonable time to get up, washed, dressed, breakfasted, check that Chris was OK etc. At least I thought I did. It was late at night, I was very tired after dealing with the out-of-hours team, and I think I was more than a little stressed. Whatever the reason, I actually set the alarm for 6p.m. not a.m.

So my alarm didn’t go off, and I overslept. I actually woke at ten to seven, looked at my clock and jumped out of bed in shock! I didn’t realise that it was even possible to get showered and dressed in ten minutes flat!  I didn’t have time for any breakfast though. I grabbed some fruit and yoghurt which I ate in the car on the way down, praying that there would be coffee and danish pastries available at the meeting – which there were.

Perhaps fortunately I have a reputation for not being good at mornings, so I don’t think that my colleagues were surprised that I still looked half asleep when they got here. But I hope I don’t have too many mornings like that again – far too stressful! Perhaps I should buy another alarm clock that’s a bit more user-friendly. One where the difference between “a.m.” and “p.m” is something more than a barely-visible LCD indicator.

Calling out the NHS out-of-hours service

By Gillian

Chris had a dose of palliative radiotherapy yesterday afternoon, on the L1 vertebra where he has a tumour. That’s about at the level of his diaphragm, so the radiation went right through his digestive system from back to front. The beneficial effects of the radiation continue for about 6 weeks. However, the unpleasant side effects started almost immediately – in this case within 20 minutes.

I was driving us home from Cheltenham, and had to pull over into a layby four times to allow Chris to throw up – copiously. Fortunately, we now keep  a sick-bowl in the car in case of such emergencies. When we got home, he was no better, and vomited a total of ten times in four hours. He was in quite a lot of back pain too, but couldn’t even keep water down to allow him to take either his pain-killers or indeed his anti-emetics.

I decided enough was enough and phoned the chemotherapy help line at Cheltenham (even though the problem was clearly due to radiotherapy – they are very helpful and I reckoned they would be able to tell me if these symptoms were normal or whether Chris needed treatment). The nurse on the phone-line said that it sounded very much as though Chris had got into a vicious cycle of vomiting, and that he urgently needed an anti-emetic injection to break the loop. He suggested that I phone my out-of-hours GP service, and say that I’d spoken to the helpline who advised that I get someone out to the house to sort Chris out.

Up until now I’ve never needed to call our GP out-of-hours, so I didn’t know what to expect. I was put through to a receptionist and had tell him the story from scratch. Fortunately, I was able to also tell him that we did in fact have some doses of Chris’s anti-emetic medicine in injectable form, prescribed for him by the palliative care consultant in Worcester, in case of just such an emergency. However, it was no use to us, as we didn’t have a syringe or needle.

The receptionist decided that, since we knew what the problem was and already had the prescribed medicine for it, we didn’t actually need to be seen by one of the out-of-hours GPs. Instead, he referred me to the Out-of-hours District Nurse team. I was a bit wary about being handed on from one team to another, in case I got lost in the cracks, but I needn’t have been. Within fifteen minutes, the receptionist for the out-of-hours nursing team phoned me back. I had to go through the whole story again, and she agreed that it was indeed something that her team could do. Five minutes later, the duty district nurse herself phoned to ask for exact directions to the house, and was here within a further ten minutes. From first calling the chemotherapy help-line to having a nurse in the house checking Chris over was well under an hour. Not bad!

Of course, that would have been far too easy. There was one final hurdle to overcome. We had the anti-emetic drug in injectable form in a box clearly labelled with Chris’s name and dispensed by Worcester hospital. But it appears that the Malvern and Worcester IT systems don’t talk to each other as  there was no record on the Malvern system of the prescription. And without a specific instruction from a doctor, the nurse was not actually allowed to give Chris the injection that everyone agreed he needed!  Fortunately she was a very pragmatic, no-nonsense person, and she wasn’t going to let a poor IT system interfere with her job. So she phoned the out-of-hours doctor herself, got put through to the duty GP, explained the situation and what she was going to do, and got a verbal go-ahead. Then she jabbed Chris with the injection that she had  already prepared, and that was it – except of course for the ten minutes of paperwork she had to fill in, detailing case notes and treatment. The vomiting eased, and by midnight he was able to take and keep down his pain-killers so that he could get a reasonable night’s sleep.

That wasn’t the end of the story. This morning Chris was phoned first by our GP who said that he would prescribe both anti-emetics and pain killers in injectable form, and also give us the appropriate paperwork to permit a district nurse to use them. Then the nurse herself phoned to say that, when we picked up that prescription we should also collect a “just in case” box from the surgery, containing needles and syringes etc so that we would be better equipped next time. I hope that “next time” is a good long way off, but it is good to see the back-up that’s available.

One reads in the newspapers dreadful stories about out-of-hours services going horribly wrong. But when we needed it yesterday it worked very well indeed, albeit with a pragmatic work-around, and I have nothing but praise for the professional way the medical team dealt with the situation.

Post chemo week 6 update

The past week seems to have been dominated by back-care and food, sometimes with friends.

On Tuesday, despite a slightly dodgy start, I had a great time meeting friends in Ludlow, although my back paid for the fun during the whole of that evening. But it was definitely worth it. I’ve found it harder and harder recently to get out and meet people, so I’m glad I didn’t have to pass up that chance to do so.

A couple of days later a present arrived in the post — Real Food by Nigel Slater — and we seem to have cooked nothing but recipes from the book all week. It has been a real feast. Thank you, Gill. We’re both very grateful.

Yesterday we were due to have gone to London for a dance, which I was really looking forward to, but my back was too unreliable to make the trip worthwhile. We heard reports today that we missed a good party, which is a shame. Deepest apologies once again to Tom and Katie for our failing to make it.

I’ve taken life very easy today, with only the simplest of cooking, and have managed to avoid the refuge of the sofa until the evening. But I’m here now, blogging, and were it not for the subject my mind would be very handily taken off the state of my back. Time for a good book, I think…

Trying to be sensible

By Gillian

This weekend, we had planned to be at a garden party and dance at the house of a friend’s parents, in London. We went this time last year and both thoroughly enjoyed ourselves – even Chris danced which is not something he does often! This year, we received the invitation several months ago, whilst Chris was in the middle of chemotherapy, and it’s been something we’ve both really been looking forward to, which has helped us get through some of the grottier days.  I’d even bought a new pair of shoes to wear to the dance (and I can hear my sister falling off her chair in shock at that statement……..)

However, since getting back from Wales two weeks ago, Chris has been getting progressively worse. One of the tumours in his spine is pressing on a nerve, giving him near constant back pain. The opiates he’s taking for the pain make him sleepy, so he’s been spending most afternoons snoozing on the sofa. It was quite clear that he was not going to be able to cope with a 3 hour drive to London in our little Mini, followed by several hours sitting on a garden chair – let alone dancing.

So, very reluctantly, we decided we would have to cancel going to the party, and have a quiet weekend at home instead. Chris has some palliative radiotherapy scheduled for Tuesday afternoon, which we very much hope will help with the pain. Then, if he can cope on lower doses of the opiates, he should have more energy too.

We really are trying to be sensible, and not overdo things at the moment, even though it’s very disappointing that we have to limit what we can do. So I’m watching the men’s doubles finals at Wimbledon on the TV, while Chris is fast asleep on the sofa, propped up on cushions to ease his back.

A pleasant foodie surprise

By Gillian

Last weekend, while we were staying with my parents for some much-needed R&R, we visited a university friend of Christopher’s one day for lunch. We thoroughly enjoyed ourselves chatting, and Gill cooked us all a delicious chicken risotto and an incredibly rich and gooey chocolate pudding.

The cookbook she was using was Nigel Slater’s Real Food, which Christopher and I happened to have given to my mother for her birthday just before Christmas. We’ve several of his other cookbooks and really like his style of cooking – good ingredients, cooked quite simply, but with lots of flavour. Real Food is not just a cookbook, it’s also a very interesting read. My mother loved it, and read it from cover to cover. My sister also fell for it, and since our mother wouldn’t allow her to “borrow” it (i.e. a semi-permanent loan), she and her boyfriend pooled their Christmas book tokens to buy a copy for themselves.

Earlier this week I’d just got home from work when the doorbell rang, and it was a delivery man with a parcel from Amazon. I thought of course that Christopher had been buying books again (I knew I hadn’t, at least not recently). But it was a gift from Gill of the Real Food book. A huge surprise, and a really thoughtful gift.

Christopher cooked from it tonight – parmesan crusted plaice. Absolutely delicious. Thanks Gill!