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Weekly status

Since the last status report most of the things I reported as a downside have improved, which is pleasing. The biggest problem was that I was being sick most mornings, and things got much worse on Monday morning. I was prescribed Cyclizine instead of Metoclopramide, which helped a little, and then on Wednesday at my weekly meeting with the oncologist I also spoke with a symptom control specialist, who prescribed Haloperidol, which is normally an anti-psychotic drug but is also used in low doses to help control nausea. That has definitely helped, and I am no longer being sick, although I do have to be careful that I take the Cyclizine on time or I will feel sick.

I’ve been eating better, partly I think because I am not suffering from so much nausea. A nice consequence eating more has been that I have gained a surprising amount of weight. I weighed 11st 8lb this morning, an increase of six pounds in the week. I don’t believe all of that is true body weight, though. Some of it must be because I have replaced the contents of my gut, I’m sure. To cap it all, I’ve finally got rid of the constipation that had been bothering me since I started taking morphine before the chemotherapy started. Phew!

There has also been very little pain from my cancer, so I reduced my morphine intake once again, and am now taking only 10mg per day. I see no reason at the moment why I shouldn’t come entirely off the morphine this week. I have had some niggly pains which are probably related more to the chemotherapy than to the cancer. For example, my teeth feel very sharp, and so I have a sore mouth where I’ve caught my tongue and the inside of my cheek on them. The skin on my thumb has split, and is taking a long time to heal. Split fingers and a sore mouth seem to be common complaints associated with the chemotherapy, so I suppose I must expect something of this sort. Finally, just to add injury to insult, I’ve pulled a muscle in my back which is simply annoying. I think that happened when I shovelled the snow that fell this week. (Of course, that I was able to shovel snow is another good sign :))

Another niggly thing has been the sniffles, which haven’t improved. Worse, I have been blowing my nose so often, and the lining of my nose has been thinned by the chemo drug, which has resulted in some spectacular nosebleeds. The worst lasted 45 minutes, which was a little worrying at the time. None of the others since has been so bad, which is a relief.

I think that a combination of the reduced morphine levels and the sniffly nose has made it harder for me to sleep well. Even that has improved towards the end of the week, but I would prefer to get a little more sleep this coming week.

To finish on a high note, I have finished taking the photographs which were the second half of the tasks for my project. I’m extremely pleased with them, although I haven’t heard anything from my collaborator. I do expect to find out what he thinks later on this week. I’m sure he’ll be pleased too.

To summarize, although I was quite sick at the start of the week, most of the things that were bothering me have improved, leaving only a few niggles. I’m much stronger, which meant that I could clear the heavy snow that fell, and my photographic project is going well. A good week.

21 02 2010 icyjumbo Uncategorized Comments (10) Permalink

More snow

Yesterday the snow came again. I phoned Gillian at work to make sure she knew how heavy the snowfall was on top of the hill, as it is often worse up here than down in the valley where she works. She drove home straight away, but still didn’t manage to make it all the way home, abandoning the car less than half a mile from home.

Nearly nine inches of snow had fallen, meaning that we were once again snowed in. The difference between this time and the last was that I was able to do a good deal of the snow clearing myself. Gillian had cleared the slope up into the drive, and a narrow path to allow us to walk out of the front door, but new snow had covered that. I started by clearing the slope, and was quickly joined by Will with his own snow scoop. He is — naturally — a lot fitter and stronger than me, so between us we managed to clear enough snow to make the drive passable in about one and a quarter hours. It’s the most exercise I have taken for months. I was extremely pleased to have been able to help with this chore, so much so indeed that it was more of a joy than a chore for all the effort it took.

Through the Arched Window

After clearing the snow I started to look at it properly. First I looked at it from the warmth of the living room, and took this photo. It’s a sort of companion to my previous snow photograph, but this time it’s a straight image,  with no manipulation other than a slight exposure and levels tweak. Click the image to see a larger version.

I was very taken with the contrast between the shaded and sunlit trees. The bush nearest us is in our garden, which wasn’t seeing much sun, unlike the trees in the wood on the other side of the road. I was really taken with the contrast between the light on the wood, and the shaded bush. “Bush” is horribly unfair. It is a small evergreen tree that is planted in one of the columns of the front wall of our garden.

Light and Shade

Then Gillian pointed out that the sun was catching the snow crystals and making them sparkle. How could I resist trying to capture the effect? I also liked the way the sun revealed the texture of the snow. You can see in the shaded part at the bottom that there is virtually no structure. To see this difference gave me a truly visceral understanding of why the skiers at the Olympics prefer some sun on their downhill runs. It may be a bit hard to see the sparkles, but if you click the image you’ll see a larger version where they should be more evident. What you can’t really see, even in the full sized image, is that the sparkles were coloured. Each sparkle was essentially a single-pixel rainbow. Not very bow-shaped, but they were certainly colourful.

Sparkles!

What a difference from the last snow fall! Not only was I able to clear the snow, but I had enough energy left over to try to capture some of the loveliness of the scene. I’m sure we’ll get fed up with the inconvenience soon enough, but it was good to be able to appreciate something beautiful when it appeared.

19 02 2010 icyjumbo cancer
photograph Comments (12) Permalink

New treatment possibility

An interesting day at the clinic today. We had come across an article on the Cancer Research UK site that indicated that Herceptin could be a viable treatment for my type of cancer, so I brought up the subject with the oncologist. It turns out that it isn’t straightforward, it might not be appropriate, and there will be some hoops to jump through, even if it is viable.

First, as a biological therapy — one that works at a genetic rather than at a chemical level — the cancer has to have the right genetic make-up. In the jargon, it must over-express the HER2 gene. If it does, then Herceptin can be a good way to attack the cancer. It turns out that only about 7–16% of gastric cancers over-express that gene, so the chances that the treatment is appropriate are quite small. But if it makes sense to use Herceptin, recent evidence showed that median life expectancy was increased by three months. That may not sound like a lot, but I only get one chance so I want to play for everything. A genetic test of a sample of the cancer will be needed to determine whether Herceptin is an appropriate treatment.

Second, Herceptin hasn’t (yet) been approved as a treatment for oesophageal cancer by NICE, so it isn’t possible to prescribe it within the NHS. If I want the treatment, I’ll have to find a way to pay for it myself. Fortunately I can do that. Even more fortunately, I only have to pay for the genetic test at the moment, which is a lot cheaper.

Third, it looks as though Herceptin isn’t compatible with Epirubicin, so a decision about changing the direction of my therapy would have be to taken. It’s too soon to be thinking about that now, as we don’t even know whether Herceptin would be an appropriate therapy, but if it comes to pass it will be an interesting decision to have to make.

The first step is to get my cancer tested for the HER2 gene. The oncologist found that the biopsy sample of my cancer was in Redditch, and we gave her the go-ahead to send it to Birmingham for testing. I hope there’s enough of it left to allow the test. If not, I’ll probably have to undergo another endoscopy, which is not my favourite medical procedure of all time, not by a long way!

What do I do next? I wait for the results of the genetic test. I’ll try to do it as calmly as I can, but calmness is not my strongest suit. Oh well…

17 02 2010 icyjumbo cancer Comments (9) Permalink

Faster, better, cheaper

When I was working it was a standing joke that our main customer always wanted things faster, better, and cheaper. The joke, of course, is that it’s almost always impossible to improve all three dimensions at the same time. But today I think I’ve actually done it. I’ve found a better way to deal with the line coming out of the boat bag, better even than the method I used before.

I remembered that the pictures of the boat bag had been taken when they were full, so that the top was tightly wound down, and there was very little air inside the bag. I had been folding the top down two or three times, which left lots of spare room inside the bag. That meant that the wound-down top could loosen a little, and therefore that I had to find a way to make a good seal around the line. I solved the problem then by using micropore tape.

This morning, I tried winding the top down as far as I could. The first time I did it I found that there was quite a lot of air in the bag, and that I couldn’t force it out easily by squeezing the bag, which surprised me for some reason. “It must be airtight,” I thought, “which means that as long as I wind the top tightly, I don’t need the tape.”

I tried again, this time expelling the air, and managed to get about six windings. It was worth an experiment, I thought.

It worked. After my shower there was no more water in the bag than using the previous method. In fact it seemed, if anything, even dryer inside than before.

So the method is better because it lets in less water; it’s faster because I don’t need to fiddle around with micropore tape; and it’s cheaper because I’m saving on tape costs. How wonderful!

16 02 2010 icyjumbo cancer Comments (6) Permalink

A Bad Morning

By Gillian

We know that Chris will have good days and bad days, but on the whole things have been going OK for the past few weeks. So we were unprepared for this morning. He was very sick indeed on waking – threw up six times in two hours, and couldn’t keep anything down – not even water, let alone his anti-emetic pills. I phoned the 24hr chemotherapy helpline based at Cheltenham Oncology dept and discussed his symptoms with a specialist nurse there. She was of the opinion that he urgently needed a stronger anti-emetic, preferably by injection to get around the problem of immediately throwing it back up. She was very happy to give Chris the injection on the ward at Cheltenham, but that would have meant me driving all the way there down the motorway with him puking in the passenger seat! So we agreed to use that option as a fall-back, and see if our GP could help.

I phoned the GP’s surgery and explained the problem, and they were extremely helpful. They arranged to send one of the doctors out here on a home visit to give him the recommended injection. It was into the muscle and was rather painful, but seemed to have the desired effect.  What with that and the diazepam the GP prescribed to relax the spasms he was having in his neck and shoulder (giving him a stinking headache) he felt very sleepy and went back to bed for nearly four hours. So I was finally able to get into work just in time for lunch, and only half way through an important meeting with my main customer…….

The doctor also gave Chris a prescription for this new anti-emetic, cyclizine, in tablet form to try for the next few days (thanks Mel – you said this might happen). We’ll then have to discuss the anti-emetic regime yet again with the oncologist on Wednesday.

15 02 2010 Gillian cancer Comments (8) Permalink

Status report

This evening marks the half-way point in the first three cycles of chemotherapy, or putting it another way I’m a quarter of the way through the entire chemotherapy treatment. That feels like a little bit of a milestone, although no physical event marks it.

I’ve resumed one of my projects, and am half-way through the tasks that we agreed for the next ten days. I’m very happy about that, and the results so far are very pleasing indeed.

I wrote earlier about my upgraded shower arrangements, and they are still working well. In fact, I’m getting faster in the morning. It won’t be long before my morning routine is back to a normal-ish amount of time. That’s quite a relief, as it now makes it so much easier to get the day started that I feel as though I’ll be able to get more done with some of my personal projects.

Something else that helps with that is discovering that Waitrose delivers groceries in our area. I make a menu and a list as normal, and then instead of going out and buying it, I simply order online. It feels slow and clumsy entering each individual item, but the time saved is considerable. And when I’m in purdah, as I am now, I can’t go out, this delivery service makes a huge difference.

Visiting card

Finally on the upside of the week, my new visiting cards were delivered. I made the picture side of the card based on the photo that you can see near the top of the page. I used inkscape to trace the original image, and then finished it in Photoshop. Moo printed the cards for me, and I’m very happy with them. It was quite a long, involved operation, but I really enjoyed doing it. The image tracing itself was a very right-brained activity, and the time passed very quickly.

On the downside of the equation, however, I have been sick almost every day this week. The oncologist has increased my anti-emetics, which may have helped, but I’m not sure. I think the fact that I have been able to reduce the amount of morphine I am taking, and also the amount of anti-constipation medicine, may be having more of an effect. Last week the sickness was mostly on waking up, and provided I could throw up a sacrificial mug of tea, the rest of the day was fine. This week, however, the sacrifices haven’t always worked, and I have often felt grotty during the day. What’s worse is that sitting in my usual chair seems to make things worse, whereas household chores appear to make them better, which means I find myself doing laundry and ironing, much to my surprise.

The other thing that has been getting me down is the constant sniffle, due to the 5-FU, I am told. I wake up with a stuffy nose, and I am constantly mopping up dribbles. It makes my nose sore, and feels like an unnecessary drag on my day.

My weight has dropped again. I weighed 11 stone 1.6 lb last time I weighed myself. A couple of weeks ago I was over 11 and a half stone. I thought I had been eating well, so I don’t understand where all the poundage has gone. This week I’ve been concentrating on packing in the calories, ensuring that I eat larger lunches than I am used to, and trying to fit in both desserts along with snacks and biscuits or sweets during the day. We’ll see how much difference that makes next week.

Overall, a mixture of good and bad. I’m disappointed about my weight, the continued nausea, and my runny nose. I’m pleased about the things I’ve accomplished, and about things that have got easier. I’m going to carry on concentrating on the latter.

14 02 2010 icyjumbo cancer
status Comments (9) Permalink

Why did I get cancer … ?

… or was I just unlucky?

It is a natural question for anyone to ask when he first discovers that he has cancer. As a scientist, my first inclintion was to look for some data to help me to understand whether anything I did could have contributed to my cancer’s development. It doesn’t take long to find out that there is a whole list of risk factors for oesophageal cancer. From a Wikipedia page I found a long list of factors that increase the risk of getting oesophageal cancer, of which the only relevant ones were my sex (I’m male, and men are much more likely than women to get this cancer) and the fact that I was overweight (until the cancer got going). One of the factors mentioned is age, but only old age, so in that sense my age reduced my risk of developing cancer.

This is not the end of the story, however. There are some factors associated with reduced risk of contracting oesophageal cancer. From the same page I found that the fact that I occasionally used ibuprofen worked in my favour, as did the fact that I like both brocolli and coffee, maybe even pizza! Unfortunately, I don’t have an ulcer, which is a shame, as Helicobacter pylori (the bacterium associated with ulcers) may have a protective effect.

All very well, I thought, but there are no numbers. How harmful was it that I was overweight (technically obese, as I was more than a quarter heavier than my ideal weight)? And did my diet otherwise help? Let’s try to find some numbers.

The Cancer Research UK site was helpful here. One page told me that obesity is associated with a risk factor of roughly 2. What does that mean? Simply put, it means that I was twice as likely as a non-obese person to develop cancer. Wikipedia has more details on risk factors if you’re interested.

How likely is a normal person to develop cancer? Once again the Cancer Research UK site provides the information. Of every 100,000 males aged between 45 and 49 years, 6.8 of them are expected to develop oesophageal cancer. In other words, I had a probability, in the absence of any risk factors, of 0.0068% of developing oesophageal cancer. If you leave out all the positive things I did, such as drinking coffee and eating a wide variety of vegetables and pizza, and only consider the fact that I ate too much and was therefore overweight, I had a probability of 0.0136% of developing cancer.

I think the conclusion is clear: I was quite simply unlucky. It would not make any sense at all to say that my obesity caused my cancer. Otherwise, how could I explain the remaining 99.9864% of probability? Similarly, it probably made no practical difference that I ate and drank all those “good” things, as the associated probabilities were equally tiny.

What does this tell me about risk factors? Let me try to illustrate with a question. How would you feel if you were told that being obese increased your chances of developing oesophageal cancer by 0.0068%? Or put another way, that you were increasing your chances to 0.0136%? Would you worry about it? No, neither would I. But if you were told that you were doubling your chances of developing the cancer? That would be far more likely to be worrisome, wouldn’t it? These differences are statistically significant. That means you can reliably measure the difference; it doesn’t mean that the difference is important. And there, I think, is the reason that people talk about risk factors. The measurable difference is something you can talk about and get worried about. I have noticed frequently that news programmes on the radio or television often mention increased risk factors, but they never say what the absolute risks are. Maybe that’s because those risks are not uniform across the population, which would make it difficult to summarize them in a single, easily understood number. (Consider that as a relatively young man, my risk of developing my cancer was a lot lower than that of a retired man, for example.) But I don’t think it would be too hard to show a graph of the relevant distributions. Scare stories attract an audience, don’t they? And they’re easier to write, just less informative.

There. I’ve said enough. Time for others to have a say.

13 02 2010 icyjumbo cancer
invective Comments (5) Permalink

On taking a shower, part 2

A while ago, I wrote about my difficulties with taking a shower while keeping my PICC and chemo pump dry. It has taken quite a while, but I think that I now have a very good pair of solutions which combine to make it almost easy to take a shower.

Small boat bags. Click image for Amazon listing.

The first part of the solution was a boat bag, kindly lent to me by some friends. These have an opening at the top where one side is springy metal, and the other side is a half-inch wide piece of elastic. The two ends of the top clip together, as webbing belts do. If you remember to roll the top the right way, it makes a relatively waterproof seal. That is, the elastic side must roll down the outside of the bag, so that it is stretched against the metal strip.

That clearly presents a problem, for the bag is intended to hold the pump, which has a line to take the drug into my body. But there is a neat solution. The metal strip is ever so slightly shorter than the width of the opening, meaning that there is just enough room to slide the line down the side of the metal strip. (Here I should say that the metal strip is entirely enclosed inside the waterproof fabric of the bag, so that it never comes into direct contact with the line, and therefore doesn’t risk rubbing against it.) I keep it in that place using a small strip of micropore tape, and then use a second piece of micropore to improve the seal around the place where the line exits. Finally, I use a loop of paracord to hang the bag over my shoulder. It is very rarely that a millilitre or two of water makes its way inside the bag, and the pump’s own pouch is more than enough to protect against that small an incursion. I, at least, am very happy with this side of the solution. It’s much easier than making a sling from knotted paracord to carry a double-wrapping of ziplock bags, which was my original solution to this problem.

A cast protector for use in the shower. Click image to see more information

The second part of the solution arrived yesterday, and I used it for the first time this morning, with great success. I found an arm, or cast, protector that is intended for use in the shower. It’s a perfect product for the problem I had. I chose one that ought to be long enough, by the simple expedient of measuring from my fingertips to a point well above the dressing over the PICC line’s entrance into my arm.

The protector itself is plastic, and seems fairly durable. You insert your arm through a rubber seal with a small hole, so that it ends up tight against your biceps. (I ordered a child’s size that had the right measurement, but which might have been a mistake as the arm-hole was also child-sized. Howver, it was a simple matter to enlarge the hole’s diameter by about 5 mm.) The web-site says that it should last for about eight weeks, so I actually bought two, although I think it is only likely to be an accident that damages it, rather than wear and tear.

It now takes me only a couple of minutes to get ready for a shower, instead of five to ten. Moreover, the manufactured products do a much better job of keeping things dry that need to stay dry. If there is a downside at all, it is that my left hand is now covered by plastic, and it isn’t really very easy to use it, for example, for getting up a lather with soap, or for scrubbing those parts of my body that I can’t reach with my right hand (right shoulder, right elbow, left hip, I’m sure you can think of others…) But it’s a minor inconvenience at worst.

All in all, as I said at the top of the post, I am extremely pleased with these two solutions. Mornings are now a fair bit simpler, and lots less fraught.

UPDATE: I’ve found a different way to seal the boat bag that is better, faster, and cheaper.

11 02 2010 icyjumbo cancer Comments (6) Permalink

This made me cry

I found this on Hacker News. She says it so much better than I can. It’s what I want to say. Just watch it, please.

09 02 2010 icyjumbo cancer
invective Comments (10) Permalink

Feeling Queasy

By Gillian

This second chemotherapy cycle really seems to have knocked Chris backwards. He had been feeling so much better at the end of the last cycle but, notwithstanding the really enjoyable weekend we had with my sister and her boyfriend, he’s been feeling sick  ever since he came out of hospital last Friday. The house is festooned with sick bowls, so that there is a receptacle within arm’s reach at all times, and he’s certainly making use of them! We’ll be seeing the oncologist tomorrow at the regular Wednesday bag change, and will have to discuss sickness control with him as this is really impacting our quality of life. I think we’ll be cooking from the chemotherapy cookbook again for the rest of the week, as his appetite really needs tempting again.

09 02 2010 Gillian cancer Comments Off on Feeling Queasy Permalink