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Status update

On the whole, another good week.

I met the consultant on Wednesday, and we agreed that it was sensible to reduce my painkiller dosage. I’m down to 30 mg of morphine per day, and feeling no pain at all, which makes me very happy. I hope to reduce my intake of painkillers still further, if things continue to improve as they have been doing.

On Thursday and  Friday I started the second round of chemotherapy. This time my liver function was fine, which meant that I could have the full ECF treatment, including the epirubicin that was omitted last time. The downside will be that I expect to start losing my hair in two or three weeks time. Never mind, it was never my crowning glory. Gillian would normally have delivered me to the hospital, and picked me up again, but this time she had an appointment that we  both really wanted her to be able to keep, which meant that she could only deliver me, and not be there to take me home again the following day. Her sister, accompanied by her boyfriend, picked me up and took me home, and generally babyhusband-sat me. I was extremely grateful, mostly because I don’t want my illness to step too far into Gillian’s own life. I can see that it must affect her, but it would grieve me sorely if I saw Gillian losing many opportunities because I was ill.

I’ve already mentioned that we planned a blow-out orgy of food this weekend, and we did indeed have every single meal as planned. Better yet, I was able to cook all of them, even if I was helped out quite a lot. Gillian’s sister is a wonderful cook too, so it was slightly nerve-wracking, but it all passed off really well. Even better, she brought some of her famous apple tarts. Proper glazed tarts with superb pastry and frangipane. Wonderful! And we still have two small ones left.

Everything is not perfect, however. As the weekend is drawing to a close, I am still feeling a little sick. I had hoped that the nausea would have passed by now, but instead it has been ebbing and flowing. I don’t think I’m going to be able to cook this evening, and even though I’ve eaten well this weekend, I think I’ll be unlikely to eat much tonight.

On the upside, I shall be making progress on one of the projects I planned for myself when I was first made redundant. It is a real pleasure to have brought that project out of hiatus, and I am looking forward immensely to continuing that work. I’ll write more about it when I am able to, but it has to stay under wraps for the moment.

That’s about it. Still eating well on the whole, but post-chemo nausea is more troublesome than I would like. I’m well enough to contemplate doing some real projects, and am definitely looking forward to that.

07 02 2010 icyjumbo cancer Comments (10) Permalink

The Snorchestra

Imagine the scene. Six men in a ward, so there are no spare beds. Night falls, and the lights are turned out at eleven or so. One by one we all drop off to sleep. By midnight the ward is very peaceful. I can no longer stay awake, and I think I’m the last to drop off.

At two o’clock, the wind section is in full flow. Five men all snoring in unison. It is uncanny how synchronized the breathing is. Everyone breathes in — snort — and breathes out — whistle. In — out — in — out. But if that was all it was this would be a very dull orchestration. One of the wind section drops out in order to add a plaintive vocal part. He calls for a nurse. It is clear he is in pain.

The nurse’s feet tap-tap-tap a percussion accompaniment to the night’s increasingly complex orchestration. More percussion comes, slightly syncopated, as a second nurse, and then a doctor all enter to play their parts at the bed of the man in pain. Eventually their ministrations have the desired effect, and the vocal part modulates from anguish to comfort. The percussion section departs. I can no longer refrain from adding my contribution to the wind section, and as I drop off again, I can hear that I am snoring in perfect unison with the rest of the ward. Peace, of a sort, returns.

It is a very ephemeral sort of peace. The morning arrives, and with it comes the morning shift, one of whom is a fresh air fiend. The doors at the end of the ward are flung open, and the breeze blows away all remnants of the peaceful harmonization. It might have been a dream, but I know it wasn’t. I was there. I played my part.

06 02 2010 icyjumbo cancer Comments (10) Permalink

Second Chemo cycle started

By Gillian

We saw one of the oncologists yesterday at Worcester Hospital, and she confirmed that Christopher’s blood tests showed that his liver function is back to normal. His yellow colour has also faded, so we’re confident that he’s now over the obstructive jaundice. His white cell count was also satisfactory. So that all means that he is able to have all three components of the ECF chemotherapy this cycle, including the epirubicin which they missed out last time. That’s the one that is particularly good at making one’s hair fall out, so he will have that to contend with this cycle. The oncologist also confirmed that they’re going to tinker with the anti-emetic medicine this cycle, adding in a new drug Aprepitant and reducing the steroid dose. That should reduce the likelihood of another psychotic episode.

We had a message from Cheltenham hospital last night, confirming that they had a bed available for him for tonight, and that’s where he is now. We went down there this morning, and he immediately started the pre-hydration and flushing of his kidneys with a saline drip, with the gubbins plumbed into the PICC line in his left elbow. I left him there after lunch, and they have subsequently started him on the epirubicin with the cisplatin to follow overnight. Again, those will go in via the PICC line. Then there will be more saline drip, and if all goes well they will plug him back into the 5-FU pump and let him out tomorrow morning.

04 02 2010 Gillian cancer Comments (6) Permalink

The battle of the thermostat

Before my cancer I was always the warm one, while Gillian wore extra jumpers to try to stay warm. Even so, her hands were often cold. I would compound the misery by wandering around the house in only short sleeves. The cold weather and cancer have changed all that.

We first noticed that I felt colder than normal when I started turning up the thermostat for the central heating. A couple of hours later I would feel cold again. On my way to the kitchen to make a cup of tea, I saw that someone had turned down the thermostat. I, as a reasonable human being, turned back up again. After a few days it seemed that neither of us would cede victory to the other, so we negotiated a treaty.

Gillian found me a pair of warm, stretchy woollen gloves to keep my hands warm. I started wearing two pairs of socks and a thick jumper, and we found a compromise setting for the thermostat.

The gloves weren’t a perfect solution, however, so Gillian found a luxurious pair of cashmere fingerless mittens that allowed me to work at my laptop.

What a good job it was that we compromised on the temperature in the house! The snow prevented the oil company from delivering a top up to our domestic heating oil, our main source of heating in the house. We did order the top-up in plenty of time, but the extra cold weather meant we used up the oil faster than ever. We turned off radiators in half the rooms in the house, bought a couple of electric convection heaters, and retreated to a couple of the most comfortable rooms. We survived. Just. When the oil was eventually delivered I calculated that we had about 10 or 20 litres left in the tank. We were practically running on fumes. Thank heavens we struck our treaty when we did.

Now the weather is warmer and we have oil in the tank, I’m feeling a lot warmer too. I’ve returned the skiing socks to the drawer, although I’ve kept the mittens and the jumper. Life is definitely getting better.

NOTE: this post was written at the hospital on my iPod using the WordPress 2.1 app, a surprisingly pleasant experience.

03 02 2010 icyjumbo cancer Comments (2) Permalink

About to start second chemo cycle

Three weeks ago I started my first cycle of chemotherapy. The original plan was that I should have started the second cycle today, but last week my oncologist decided that he would like to assess progress on this cycle, by looking at blood test results before starting the next cycle. This morning I went to my GP to get the blood taken for the tests so that they’ll be ready for when I see the oncologist tomorrow morning. I expect that I’ll get a new bag of 5-FU, as Wednesday is my regular bag-change day, but I’m not certain about that. Moreover, things have been going so well over the last week that I have quite a few questions to ask him. For example, I’ve forgotten to take my daytime paracetamol doses twice in the last couple of days, and I’ve noticed no ill effects whatsoever. Couple that with my improved appetite, and putting on weight, and it really does look as though the current cycle of chemo is having quite a positive effect. I’d like to know whether these effects are real or just coincidences.

The new plan is that I go into hospital on Thursday, staying overnight, to start the second cycle. I’ll come home on Friday afternoon or evening to find my sister-in-law and her boyfriend visiting us. They will be here not only to visit, but also to help Gillian with husband-sitting duties. We have planned an orgy of food for the weekend, so I hope that the side-effects of the other two chemotherapy drugs won’t be too long lasting, otherwise I might be stuck watching them enjoy all the great food.

Between now and Thursday I shall be signing the papers to start the Lasting Power of Attorney process. I am looking forward to it, as I really want to be sure that Gillian is able to manage my affairs if I can’t any more.

With all that going on, things may be a little quiet around here until the week-end, by which time I’m sure I’ll have a lot to write about. See you all then…

02 02 2010 icyjumbo cancer Comments (9) Permalink

Weekly status update

This last week has gone extremely well. I have been cooking almost all our meals, and have even been able to cook what I think of as normal food. That includes all the sorts of food that were totally off limits three weeks ago. For example, yesterday we went out to one of our favourite local restaurants, The Plough and Harrow at Guarlford, where J. was very happy to see us. We normally eat there two or three times a month, and we hadn’t seen them for at least six weeks. I celebrated by eating a wonderful rib-eye steak, beautifully cooked, and accompanied by proper chips with Béarnaise sauce. Delicious! And in the evening, I roasted a chicken with lemon and rosemary, and also made some goose-fat roasted potatoes. It was a real blow-out day, and I loved it. As a result, I seem to have stopped losing weight. In fact, I think I’ve added a couple of pounds since the low point. I was 11 stone 8.2 lbs this morning.

Not only have I been eating well, but I also have a lot more energy, both physical and mental. For example, I was able to clear the snow from the drive yesterday morning. I admit that it was only about half an inch thick, and very powdery, so that I could clear it with a broom, but that is still a big advance on previous snow clearing adventures, which I had to leave to Gillian. As for the mental energy, I spent most of the weekend preparing art work for a visiting card (I can’t really call it a business card, can I?) which I finally uploaded and ordered from Moo.com. I’ll post pictures when they arrive.

I have had very little pain during the last week, to the extent that I can barely remember the last time I needed to take an extra dose of orally administered morphine (wonderful stuff! when you need it).

The only thing that is less than ideal is that I have been sick most mornings this week. I am taking an anti-emetic (Metoclopramide) and it seems to work during the day, but I wake up most mornings feeling somewhat nauseous. Sometimes drinking a cup of tea is enough to make me vomit, after which I feel completely fine. This morning, however, I couldn’t make myself be sick, which concerned me somewhat. When I had been in a similar situation earlier in the week I threw up not only my breakfast, but most of my pills. The concern was that I didn’t know whether it was safe to take another dose or not. I have now learned to wait until I have finished my breakfast and vomited before taking my pills. This morning, however, things didn’t follow their normal course, so I took the anti-emetic and hoped. And my hope was borne out, much to my relief. I wonder whether the effects of the anti-emetic are cumulative?

To sum up: lots more energy; eating well; cooking; making things; a little more nausea than I would like.

I like the idea of keeping a formal-ish record of progress. I think  I’ll write a post like this one, summarizing how I felt in the previous seven days, once a week, probably on Sunday evenings.

31 01 2010 icyjumbo cancer
status Comments (4) Permalink

Putting our affairs in order

By Gillian

I found yesterday to be a very hard day, as we had an appointment booked with our solicitors to start putting Christopher’s affairs in order for when/if he becomes too ill to look after them himself. Although we hope that is still a long way off, it made me realise in a visceral way just where this journey is going, and I found that very upsetting.

We each made a Will when we got married, and have kept them updated whenever we have had a major change in our circumstances. Indeed, when Chris was made redundant last autumn, he updated his Will to reflect his altered situation, even before we knew that he had cancer. So that at least is fully up-to-date and doesn’t need changing.

However, we’ve always kept separate finances, and we wanted to make sure that I could handle his money on his behalf should he become too ill to do so himself. So yesterday he asked our solicitor to draw up a Lasting Power of Attorney, naming me as the attorney to act on his behalf. Before it can come into force, it needs to be registered with the Office of the Public Guardian, and that can take around six weeks. Since we can’t predict when  (or indeed whether) we’re going to need it, we’ve decided to complete and register it asap, then leave a copy on file with our solicitors and only put it into force should it become necessary. We will need two witnesses; one is the solicitor, but the other needs to be either a doctor/similar professional or a close friend who can certify that Chris is of sound mind, really wants this of his own volition, and isn’t being bullied into it by the beneficiary, namely me!

One bit of it was quite amusing. Although our solicitor is experienced at drawing up these documents, it sounds like her clientele is mostly little old ladies. We asked her how a power of attorney would work with internet banking, as some of Christopher’s redundancy money is stashed away in internet-only bank accounts. She’d barely heard of internet banking, certainly didn’t use it herself, and said that all of her clients have standard branch-based accounts so she had no idea how it would work! So Chris is going to have to make some enquiries himself with the internet banks – a nuisance, but it’s important that we find out well before we need to act.

30 01 2010 Gillian cancer Comments (3) Permalink

Remembering Sally

Sally was my mother. Today would have been her 68th birthday, but she died in July 1992 of complications from cancer. She hated the cold, and loved the warmth of Kenya. I was reminded quite how much she liked the heat when my father sent me some snaps he had of the time when we lived in Kenya, in the late 1960s.

Here is my little sister, Sophie, with Sally. Sophie’s hair is still blonde, but not quite as fair as it was then.

Here is the whole family, my father Alan, then me, then Sally and Sophie. I do remember the dog’s name, but it’s the answer to a security question, so I shall keep it private.

Finally, here I am siting on my mother’s lap. It looks as though she was reading to me while we were having tea. I think the plasters on my knee were new, so I may have been in need of some comfort. I’m afraid I don’t remember the ayah’s name, much to my shame, but I was less than five years old when we left Kenya.

I wish I could remember more about what Sally liked about Kenya. I’ve already mentioned the warmth. I also know that she enjoyed playing tennis, and I inherited her Dunlop racket when I started playing tennis when I was eleven.

When I was very young, and we were back in the UK, I can remember that she played the piano a great deal. I remember a lot of Beethoven sonatas. Later, after she contracted multiple sclerosis, she found that her fingers wouldn’t do what she wanted to, which meant that she played a lot less. She would still accompany both Sophie and me as we played the violin and cello respectively, or when I sang. Sally was always very proud of our (Sophie’s and mine) accomplishments. I particularly remember one evening when I was nearly nineteen years old. I had sat the Oxford entrance exam, then left school to take up a gap year job 150 miles from home. The letter was sent home, so my mother sat waiting for me to get home from work and phoned me at one minute past six. Her voice was trembling when she told me what she was holding. “Go on, then,” I said, “open it.” She did, and whooped, as the letter started with “I am pleased…” I am certain she was happier than I was that evening, and I know that the achievement was celebrated with some earnestness that evening. It still makes me smile to think about how happy she was that day.

If you have happy memories of my mother to share, please write about one of them in a comment. I’d love to know how you think of her.

29 01 2010 icyjumbo photograph
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If not “fighting”, then what?

The following is the text of a letter I sent to the editor of the Independent newspaper, responding to a letter in today’s paper in which an oncologist deprecated the use of the word “fight” in relation to a cancer patient’s management of his or her cancer.

Sir,

Dr Bruce Sizer takes issue with the language used in describing a cancer patient’s struggle with cancer, on the grounds that if the patient dies of the cancer then they “lost” their battle (Letters, 28th January 2010). But he fails to offer a better alternative to the word “fight.” As a cancer sufferer recently diagnosed with inoperable oesophageal cancer, I like to use the word “fight” to describe my interaction with the condition.

I know and understand that there is no clear reason why I contracted cancer; I was simply unlucky. I accept that my cancer will probably kill me within two years. That focuses my mind intensely on enjoying as much as possible every day between now and my death. I fight the cancer with weapons such as medical treatment including chemotherapy, anti-nausea drugs, pain medication; the help and support of my friends and family, doctors and nurses; and as much good humour as I can summon. I call it a fight because every day that I enjoy myself, or achieve something of which I can be proud, is a victory for me. Victories include the making of photographs, cooking and eating good food, and visiting and chatting with friends. These are real victories to me. They make me happy. They maintain my good mood. They make life worth living every day.

When I die, I shan’t have “lost” my battle with cancer, because death will always have been the virtually inevitable ending of my story. But I shall have fought, and I shall have had multiple victories. I don’t know how else to describe what I do. I would certainly be willing to consider a good suggestion, but any other word would have to be outstanding for me to use it instead of “fight”.

It will be interesting to see whether it is published. Watch this space.
28 01 2010 icyjumbo cancer
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Taking one day at a time

By Gillian

It’s very difficult to plan ahead at the moment, as Chris feels so different from one day to the next. For the last few days he’s been having a run of feeling remarkably well, and has picked up some of his favourite hobbies (photography, Librivox) again. I suppose we got over-confident, thinking that we’d got the sickness licked for this cycle at least. But he started feeling grotty again yesterday, and flamboyantly threw up his breakfast this morning. Fortunately we had another “bag change” chemotherapy session at Worcester hospital this morning and were able to talk things over with both the consultant oncologist and a specialist symptom control nurse. They’ve tweaked his medication, adding in a new anti-nausea drug, and we’ll see if that makes a difference.

I think the key thing at the moment is not to try to plan ahead too far, but to take each day as it comes. That makes it pretty difficult now that I’m back at work, as a large part of my job is going out meeting customers and suppliers for a project that I’m leading. So I’m trying to be as flexible as I can, and calling on a network of friends and family who are prepared to “husband sit” if Chris has a bad day when I need to be away on business.

27 01 2010 Gillian cancer Comments (4) Permalink