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Cycle 3 week 1 update

What an interesting week! Definitely not straightforward at all. It started with a late entry into hospital for the 3rd cycle, continued with a lovely week of visits with friends and a weekend away, and ended with another unexpected visit to hospital.

The 3rd cycle start itself was uneventful, except that it was the first time I was able to use the 3G dongle I had bought earlier. What a pleasure to get online while in hospital! I found that I was spending many hours online — most of them waiting for downloads and reading — but I was well occupied while all the drips were going through. As ever, the people were extremely convivial, which is part of what makes the chemotherapy visits such a pleasure. Everything seemed to go as planned, and I was home again on Tuesday afternoon.

On Wednesday, Thursday, and Friday I had three different “dates”; one with an old school friend; another with a friend from University; and the third with a group of former colleagues. We ate very well as a consequence. The old school friend brought along a famous chocolate cake, billed as Good Housekeeping’s best chocolate cake in the world! It was wonderful. Dense, rich, thick, and chocolatey, and the best bit is that it is still going strong. The friend from University and I had been swapping biscuit recipes, and she brought a beautiful selection of flavoured shortbreads. They are also delicious. I’m afraid she got the shorter end of the deal as I was only able to give her a single batch of ginger oat biscuits, affectionately known by us as “Cat Biscuits”. (That’s a story for another day, I think.) The third meal was a lunch out at a local pub with a gang of about nine of us, three escapees and six current employees. The food there is very good, but we could have done a bit better if we hadn’t just turned up on spec on a Friday lunchtime. As ever there was far too little time to talk to everyone, but I did manage a bit of a chat with each person, which was great.

On Friday evening we took the train to Stoke-on-Trent, where we were going to stay in a hotel overnight, so that we could get up bright and early to queue for the Staffordshire Hoard. This is a hoard of treasure that was found locally by a metal detectorist, was declared treasure and valued at £3.285M, and was put on display in Birmingham first, and then Stoke-on-Trent. There is a campaign to raise enough money to keep the Hoard in the region and to have it properly conserved and examined. As of yesterday, they seemed well on the way to achieving their donation targets, and so they should! The museum where the temporary display was put on has been inundated with three-and-a-half-hour queues of people to see the treasure, which, of course, is why we went up on the Friday night so that we could join the queue as early as possible. In the event we queued for slightly under two hours, and it was a very jolly occasion all  round. The other people queueing were determined to enjoy themselves, and the queue itself wound around the rest of the museum, so we always had things to look at. Moreover, the museum staff and volunteers exerted themselves mightily to keep us all entertained. One volunteer stood out in particular, as he was dressed as Redwald, the king who was buried at Sutton Hoo in a boat burial. He was wearing a replica of the full Sutton Hoo armour, and looked magnificent. And didn’t he know it too! Another subject for a later post, I think.

After the visit we felt a little anti-climactic, but we wandered around and found a good Italian restaurant that I remembered had positive reviews on TripAdvisor. They let us in early and fed us well, and in the afternoon we staggered back to the hotel for a rest. After another nice meal in the evening we had an early night ready for departure back home in the morning.

All was going well until just before the taxi arrived, when I started feeling a little peculiar. The rough taxi ride can’t have helped, and I threw up all my breakfast on Stoke station concourse. In fact most of it went into a sick bag, with just a little missing it, unfortunately. I think the sight of a man being sick on a match-day morning excited the attention of one of the local policemen, but he soon realized that there aren’t many drunk football hooligans who carry a sick bag, and went to summon cleaning help. I felt a little better, and got onto the train to Birmingham in some relief, but was soon fainting repeatedly, even while sitting down totally relaxed. I think Gillian was quite worried, as she kept insisting that I wake up and lie down on the floor of the train. At Birmingham I was subjected to the indignity of a wheelchair. I say “indignity”, but I couldn’t possibly have walked, so it was a huge relief. We caught a (horrendously expensive) taxi back home and put me to bed while Gillian phoned the hospital.

After checking me over for about six hours, they released me into the care of the Richard’s parents, who have a flat in Cheltenham, and who took in Gillian and me without a moment’s thought. They fed and watered us, put us to bed in a much more comfortable room and bed than the hotel’s and generally took exceptionally good care of us. I’m to go back tomorrow to be checked out again by the consultant, but I think the way I feel now (pretty well, actually) will probably be the clincher in sending me home later today.

I think the kindness of people is what has characterized this week for me. My friends who came to visit, bearing gifts of food (always welcome to me, as I’m sure you know by now!); strangers in Stoke, Birmingham, and on the train who looked after me and Gillian while I was in trouble; friends’ parents who offered room and board; all done with extreme good humour and kindness. It has been an utterly heartwarming week, and in spite of its difficulties, I am profoundly grateful for the experience.

08 03 2010 icyjumbo cancer
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Dexamethasone update

I’ve noticed that my food doesn’t taste very good in the first few days after the start of the chemotherapy cycle. I think it must be due to the dexamethasone (steroids) that I mentioned yesterday as being so good at controlling the nausea as well as maintaining my good mood. Last night’s burger and chips were quite tasteless, in spite of plenty of salt and vinegar, for example.

Today, however, not having taken any steroids this morning, I really enjoyed the Italian lunch I had after we visited the Staffordshire Potteries Art Gallery and Museum in order to look at the famous Staffordshire Hoard. What a relief!

I promise there’ll be more about the visit soon, but it’s too hard to do it justice blogging from a mobile device, as I am today.

06 03 2010 icyjumbo cancer Comments (2) Permalink

My typical chemotherapy hospital stay

There were three of us oesophageal cancer patients out of the four on the ward, and the other two were first timers. I found myself telling them about a typical visit to the hospital for chemotherapy, and thought it might be of wider interest. The information in this post is specific to me, so please don’t tell me that it doesn’t work that way for you or a friend of yours. Treat it as a general idea of what could happen.

Normally I know the day I will go in, and am supposed to ring at 08:30 to confirm,  but often the ward’s bed manager will phone the night before to say there is a bed free and that I should come in. Sometimes, however, there is a delay as there was this time, so there is no guarantee that the treatment will happen on the scheduled day.

Before I go, I will pack a bag of necessaries. I think you’d be surprised at what I consider necessary, so I’ll list them here:

  • two changes of clothes, just in case I have to stay an extra night (as I did this time);
  • enough money to get a taxi home, or the phone number of a reliable alternative transport, in case of unforeseen emergencies;
  • washing things, including a flannel so that you can have a stand-up wash — you won’t be able to shower with the drip attached;
  • a towel;
  • snacks and drinks;
  • something to keep you occupied — I like to have a choice of books, and iPod, and a laptop with a 3G dongle;
  • pen and paper, to take notes about when to take prescriptions, and to write down blog ideas 🙂 ;
  • a mobile phone, to keep in touch with the outside world;
  • chargers for all the electronic devices;
  • slippers and dressing gown;
  • all the medicines I have been prescribed, including the ones left over from the last hospital visit, and my drugs chart which tells me what I take, when.

Eventually I will get a bed, and then I try to get to the hospital for mid-morning, certainly by lunch time. They will detach my bag and fit a pre-hydration saline drip as soon as I arrive. The drip is hung on a rolling pole with a pump that is set to deliver a set amount of liquid over a set period of time. The pre-hydration lasts for about four hours. Towards the end of that drip I will get the first anti-nausea injections (through the drip line), and the first chemotherapy drug, epirubicin, also as an injection or three through the drip line.

The second chemo drug, cisplatin, is given from a bag as a drip lasting another four hours. After that come two post-hydration saline drips, each lasting six hours, so the second one is put on some time in the middle of the night. The pumps have sensors to detect when any problem occurs. Each problem seems to have a different alarm code. The most common problem is an “Occlusion below pump”, which usually means that I have bent my elbow and kinked the line going into my arm. That’s a little like putting a tight bend into a garden hose to temporarily stop the flow. This alarm is a bing bing bong. After a few times seeing the nurse deal with it, you realize that by straightening your arm you have removed the “occlusion” and can safely do what the nurses do, which is to re-start the pump. Simple. Other problems are a little more complex to deal with, so take an expert. And you will get used to the sounds of the pumps’ alarms going off. They do it all the time. They even do it to let you know that they’ve finished. Bing bong.

During the day you will get a menu for the following day’s meals. Even though you’re probably going home the next day, it’s worth choosing something just in case. And even if you do go home the next person in the bed will be grateful. The meals are not huge, however, so if you are eating normally when you’re not in hospital, that’s when the snacks will come in useful. But it’s not a disaster if you forget to bring a snack, because you can buy more at the tuck shop in the main lobby. You can also get a daily newspaper. If you’re really lucky someone will bring a trolley with sweets and newspapers so you don’t have to make the trek or rely on your visitors to bring you things.

A few times a day the observations torture team come around with their testing equipment. Perhaps they won’t torture you, but because I have high blood pressure, the cuff squeezes my arm very tight. They measure the oxygen levels in your blood (O2 sats, which they like to be in the high 90%s) and also take your temperature, probably in your left ear because most nurses are right handed.

The other regular-ish round is for dispensing your drugs. You will have a lot. You will likely have your own prescriptions which you will have been asked to bring in with you, and the nurses will dispense both your own drugs and the ones prescribed during the chemotherapy itself. These are mainly to control nausea and sickness, and they work extremely well. I never feel sick at all while I am having chemo, which I put down to the this drug regime. One of the drugs you will likely be given is a steroid, Dexamethasone, which is wonderful. Steroids give you lots of energy, and they make me very outgoing and gregarious. Everyone else is on the same drug, I think, so the ward is almost always a fun place to be. There is always someone to talk to if you want to. Often the nurses will stop and chat too, even though they are very busy.

The last things that happen to me before the visit is over is that I get a new bag with the final chemo drug, 5-FU or 5-fluorouracil, attached to my PICC line, and then that I get a visit from the pharmacist to make sure that I have an adequate supply of all the drugs I need. The pharamacist will be giving you a TTO pack, which stands for to take out I think. That pack will have everything you need to get you through to the next visit you make to the hospital, which is for my weekly bag change in my case. There will also be some anti-sickness drugs, probably more than you need, so you will be asked to bring back the spares on your next chemotherapy visit. It’s worth writing down what you need to take when, because it can get quite complicated.

I have found every single chemotherapy hospital visit a really good experience. It’s strange to recognize it, but it really is true. You are totally looked after. The drugs keep you feeling good, and the people always turn out to be friendly, and to have a lot in common with you, which gives you someone with whom you can compare notes, and from whom you can get tips. Whatever it is, it’s not something to be afraid of. I welcome my visits to the hospital. You probably will too.

04 03 2010 icyjumbo Uncategorized Comments (6) Permalink

A recipe from hospital

Hospital food is renowned. Even today when it’s a lot better than it was in the past, it’s still not great. Think of school dinners, but with smaller portions. I think most of us on the ward spend a disproportionate amount of time waiting for the next meal. With that in mind I thought I would write about one of my more successful recipes: scrambled eggs.

“What a humble dish!” you’re probably thinking, and often you would be right. If you Google howto scramble eggs or recipe scrambled eggs, then each of the first two hits gives the same sort of instructions. They all start by getting you to break some eggs into a bowl, add salt, maybe add milk or cream, and beat lightly. This is plain wrong. In fact, most of what is written about scrambling eggs gives you the sort of meal you get in a café. My scrambled eggs would not be out of place in a good restaurant.

The traditional way A better way
4 eggs 4 eggs
Butter 1.5 oz unsalted butter
salt seasoning
milk or cream 2 tbs crème fraîche

In the traditional recipe you break the eggs into a bowl, add some salt and maybe some milk or cream, whisk the eggs lightly and then pour into a lightly buttered, small frying or omelette pan. Cook them over a medium or low heat, keeping them moving so that they don’t go rubbery. Add something to flavour them, such as smoked salmon, and turn out over some toast. A perfectly respectable dish. Scrambled eggs can be so much more.

In a medium saucepan, melt the unsalted butter over a low heat. I know it sounds like a lot, but it’s worth it, I promise. Break the eggs carefully into the pan. Don’t whisk them, or even break the yolk. Do not add salt yet. If you do, the eggs will be watery. With a spatula keep moving the eggs around. The whites will start to set, and shortly one of the yolks will break and join the mixture. Just incorporate the yellow with the white naturally. The motion should be a sort of scoop and turn with the spatula. Continue doing this while the eggs cook. They’ll cook quite slowly, and will stay liquid for some time. You want to cook them very slowly, so every now and again take the pan off the heat and stir for a while.

Eventually the eggs will begin to set. When they look fluffy and almost set, but they are still soft, take the pan off the heat and add the crème fraîche. That will stop the eggs cooking any more. You can also add the flavouring ingredients, including the salt. I like chives and smoked salmon, or parma ham, torn into strips.

Turn out the eggs onto toast. Some authorities recommend toasted sour dough bread, which is very good, but any good bread toasted lightly will be wonderful with this recipe.

And now it’s confession time. This isn’t my recipe at all, it comes from Gordon Ramsey:

UPDATE: Edited to correct the egregiously misspelt yolk. Thank you, Carol.

01 03 2010 icyjumbo cancer
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Status report — from hospital

I didn’t expect to be writing this from my hospital bed[1. Last time I was here, the man in the next bed had a 3G dongle that he was using to get online. I was astonished at how cheap it was to get mobile Internet, but it’s well within my budget, so here I am.] as I had hoped to be here tomorrow, but an urgent phone call from the ward sister led to my early arrival in the ward. A funny end to a funny week.

Things were going rather well at the beginning of the week. The sickness of the previous week seemed banished and I had plenty of energy. I had found an even better arm protector for the shower and I was looking forward to the third cycle of chemotherapy.

But in the second half of the week, I found that I had hurt my back, probably from over-exuberant snow shovelling, which made daily living quite hard and sleep almost impossible. Losing sleep is one of the best ways to lower my mood, so I haven’t felt great during the last few days. Even so, we did manage a nice day out driving around the countryside and visiting an English Heritage site on Friday. Better yet, we went to the John Williams concert last night, which was wonderful. His style is so economical, and he is so normal, that it is a wonder that such great music comes from him. He played Albeniz’s Asturias, Brouwer’s Volos Concerto, and Myers’s Cavatina. I don’t know why he is so keen on Cavatina, which always seems overly sentimental to me, but he is, and it brought the house down. I preferred the Albeniz, which I have played myself (very badly and slowly), and I found the Brouwer quite a challenge.

I slept very well last night, and was looking forward to a fun day when the nurse phoned to say that there was a bed free, and that I should come in this afternoon, so here I am. I shall be in for two nights, which means, unfortunately, that I shall have to cancel two dates with friends. Such a shame, as my time to see people is limited not only by their availability, but also by my medical necessities.

I have finally cut my morphine intake right down to zero, and am delighted about that. I didn’t want to be dependent on pain killers, especially ones that had such a … errr … clogging effect on my insides.[2. As a long-term patient one gets to be very conscious of all one’s bodily functions, in which the doctors are also inordinately interested. Sometimes I forget quite how unusual it is to speak about my  bowels in polite company. Please forgive me if I do it too often.]

My weight continues to rise, and was 11st 10lb (164 lb for our American readers — hello Ryan) this morning. That means that I have put on at least 7 lb in the last two weeks, which I find amazing. I have been told that there is no reason why I should not continue to put on more weight if I can do so. I asked about exercise, and was gently dissuaded from taking too much, not while I am on this aggressive a treatment regime. But walking is OK. How about that! Eat more and don’t bother exercising. Treating cancer truly is a weird way of life!

28 02 2010 icyjumbo cancer
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Chemotherapy Round 3 Delayed

By Gillian

Chris was meant to go into hospital yesterday for an overnight stay to have his third round of chemotherapy. Unfortunately, there is an outbreak of Norovirus at Cheltenham General hospital, and apparently some wards are closed. The upshot is that there wasn’t a bed for him yesterday. We phoned again this morning, and still no bed available. I had taken the day off work to be able to do the driving, so we decided to go out and enjoy ourselves with the unexpected free day. We went to Witley Court, one of our favourite English Heritage sites and had a thoroughly enjoyable time.

A view of the East Wing of Witley Court from the Flora fountain

When we got home at 3:30pm, there was a message on the answerphone from the hospital asking us to call the Bed Manager. I did so, and it turned out that she had called after lunch to say that a bed had unexpectedly become available if we could get down there immediately. But by the time we picked up the message we had missed the opportunity!  We will try again on Monday and hope that there is a bed free.

One good thing about the delay is that we will be able to go to a John Williams concert tomorrow night at Malvern Festival Theatre. We bought the tickets many months ago, well before the cancer was diagnosed, and it was looking very likely that Chris would be unable to go if the chemotherapy had happened when it was originally planned.

26 02 2010 Gillian cancer Comments (4) Permalink

LibriVox needs your help

Since it was founded four and a half years ago, LibriVox has run on donations of hardware and time. We have literally no money and no income. In that time we have produced well over 3,000 audio books, and placed them all into the public domain. Our book production rate is growing constantly and we can no longer trespass on the good will of a small number of kind people and organisations who have donated their resources free of cost to us.

We are therefore asking for donations to help with funding

  • hosting costs for the main LibriVox site, which is where all co-ordination happens, and all information about the project is kept. It doesn’t include the hosting of our audio files, for which we remain indebted to Archive.org.
  • a site redesign to improve accessibility
  • an easier-to-use catalogue for our readers
  • improvements to the management software, to help the admins do their job more smoothly.

We aim to raise $20,000 which we hope will cover our costs for the next four and a half years. Donations are being collected for us by Archive.org, as we don’t have our own means of taking them. We will close the account as soon as we reach our target. If you can help, please donate something to our project, even if it is only a small amount. We, and all the people who listen to the audiobooks we produce, will be tremendously grateful. Thank you.

25 02 2010 icyjumbo librivox Comments (2) Permalink

Section haircut

Recently I’ve noticed that my scalp has been slightly tender to the touch. At the clinic yesterday it was confirmed that I would probably soon begin to lose my hair, and indeed this morning in the shower I was pulling it out in clumps while washing it. Time for it to go.

I asked Gillian if she would mind taking the scissors to it. She minded, but did it anyway. It was a slightly tragi-comic event with both of us simultaneously oh-dearing and laughing. It’s quite ragged now, and I’ll have to get it properly clipped at the barber, but at least I shan’t be clogging any drains in the near future.

I was sad to lose it, but on the other hand it is a sign that the chemotherapy is making some changes in my body. Cells are being damaged, or maybe even killed. With luck, the tumour is taking the brunt of the attack, with my hair as the collateral damage only.

As for that title, it’s a nod to my former colleagues (hello Mark, Andy, Andy, David and Mike) who all thought my hair was too long. The standard haircut was a number 2, much too short for me. Looking in the mirror after it was gone, I can see that I was right all along.

25 02 2010 icyjumbo cancer Comments (4) Permalink

A meeting with the oncologist

Not much news to report from today’s visit to see the oncologist, mostly because everything is going so well. We did discuss the Herceptin treatment possibility, though, which seemed to have excited him somewhat more than I have come to expect from his usual laid back self.

First, the sample has been sent for testing. Unfortunately, the test probably won’t be very quick. I may get the results next week, but it’s more likely that I’ll get them the following week.

Second, it was interesting to hear the oncologist’s estimate of the number of people whose oesophageal tumours are HER2-positive, namely about one in six. I should practice throwing sixes with a fair die 🙂

Third, we talked about how the Herceptin would be used. I already knew that it couldn’t be used in conjunction with my current treatment, because it hurts cardiac function in the same way as the epirubicin. The triple treatment I am on at the moment is regarded as the gold standard for my condition, so it would be very hard to consider straying too far from that standard. His idea, which I really liked, was to use the Herceptin as a maintenance drug after the chemotheraphy course was done. What a good idea!

I found it a very encouraging conversation, and I’m impatient to hear the results of the genetic test.

One funny incident. The oncologist stepped out for a moment, and the symptom-control nurse took the opportunity to follow up on one of my symptoms. I’ve been getting a stiff neck and shoulders, which makes my head ache, especially when I wake up in the morning. She asked how I felt about … errr … complementary therapies. I’m sure she was remembering that I had told her I used to work as a research scientist, and would seek actively to understand my treatment. As I replied that I would like to see evidence of their effectiveness, the oncologist walked back into the room. He had obviously heard the exchange, because the biggest smile I ever saw him display split his face in two. It seems that not many patients talk about evidence in a consulting room. We quickly dismissed reflexology, but agreed that aromatherapy — which I chose to think of as massage — might be appropriate.

24 02 2010 icyjumbo cancer Comments (2) Permalink

Even faster, better, and cheaper

Would you believe it, I’ve actually found an even better arm protector to use in the shower. The protector I was using before covered my hand, which was a trifle awkward for washing certain parts of my body. I had spent quite a while searching online, so I thought I had done as well as I possibly could. Imagine my surprise, then, when I saw this on the open shelves in my local Boots the Chemist (linked from the picture).

It is essentially a tube with a hem at each end, through which is threaded an elastic cord. The cords have a spring-loaded tie, which I can tighten with one hand, just as you find on some coats. Because I can tighten each end as much as I like, it seems to be at least as waterproof as the previous protector. It takes about the same time to put on, but I can wash faster because I have both hands free.  The fact that I could find it easily in a local shop is also an improvement over Internet shopping. All in all, it’s a better solution. I wish I had found it earlier. Funnily enough, when I took it to the cash register, the woman who took my money was surprised that she hadn’t seen it before, as she took some pride in knowing her own stock. If she didn’t know about it, then I needn’t feel so bad about taking as long to find it as I did.

It was definitely a surprise to me that I was able to improve on my previous showering solution. It shouldn’t really have been. People are good at improving their situations, even if in ever decreasing increments. We seem driven to it. Thank heavens we are, for that same drive is responsible, amongst other things, for the improvements in cancer treatments that have given me back my quality of life. I wonder what the next improvement will be.

23 02 2010 icyjumbo cancer Comments (2) Permalink