Monday, September 21, 2015

Neutropaenia and other side-effects

Your normal neutrophil count is between 2,000 and 7,500 per cubic millimetre of blood. When you don't have enough neutrophils you are said to be neutropaenic.
A Red Admiral in our garden on a very sunny Sunday. Notice her black and white stripey antenna!

Chapter 9 - the medicine cupboard is not big enough
In the first few days of chemotherapy, we designated a bedside cupboard for the nasty medicines, and fitted a padlock to it. Eriska is fascinated and loves to rattle and pull the lock. 
As my side-effects multiply, the proliferation of prescribed medicines is remarkable. 
During cycle two (of which I have reached day 19 of 21) I had a perpetual runny nose, and I felt washed out more of the time. As in cycle 1, I was prescribed antibiotics for a week. At about 7 days, I developed a couple of sore patches on and inside my lip. One of them was simply caused by my accidentally biting myself while enjoying a delicious meal provided by a kind neighbour. They were the sort of sore patches that I'd normally expect to heal up and go away, but they stayed and grew and became steadily more painful. So, last week, I went to my GP, who prescribed mouthwash 2 and goop 1, and who encouraged me to phone the hospital; the hospital said "come on in", so, after a lovely bike ride, I spent most of the next day waiting to be seen, and then was given mouthwash number 3 and a new antiviral medicine and was advised to use goop number 2. The antiviral thing is five tablets per day, on top of the 8 tablets per day of capecitabine (cytotoxin), 4 tablets per day of omeprazole (to reduce stomach acidity), and 2 iron pills per day (to reverse my anaemia).   
The viral infections have been making me feel quite glum - aching teeth, sore ulcers both keeping me awake at night; ulcers sometimes very painful while eating; general grottiness.  
Today I went in to the hospital for my end-of-cycle check-up and told them how I was feeling. The doctor prescribed mouthwash number 4 (to replace mouthwash 3) and mouth-spray number 1, and put me on a new course of antibiotics (2 pills per day). He also recommended using over-the-counter goop number 3. And told me to stop taking the chemotherapy pills for a few days, to give me a chance to recover.  (Hurray!) 
It turns out my neutrophil count has dropped in the last 12 days to 0.48 billion per litre. (Normal range is 2-7.5 billion per litre.) So I'm especially vulnerable to infection, and my next chemo cycle is being postponed a week, because of both the neutropenia and the slow-to-heal mouth ulcers.  I've been told if I have any signs of having a temperature, I should not even wait to phone the emergency number, I should just go straight to the hospital as quick as possible.  

To cheer myself up, I aim to read a Lord Peter Wimsey novel. 

Sunday, September 13, 2015

What do you tell the children?

This is my second post about life with stomach cancer and palliative chemotherapy. I wrote my first post on day 15 of the first 21-day cycle of chemotherapy, and now here we are on day 11 of the second cycle.

Chapter 8 - What do we tell the children?  

What do we tell the children?  Eriska's only 1, so the main things we say to her, the human vacuum cleaner, are along the lines of "please spit that out". "Daddy's prognosis" is not yet in her vocabulary. Torrin, however, is 4, and understands "ill"; and just a few days ago, indeed, he was talking about how when an insect "got killed", he and his friend might bury it in the ground and write on a sign above the insect an explanation of "how the insect got killed". (It wasn't clear what cause of death was in Torrin's mind, but I think it's not out of the question that human agency might have played a part.)
I'm always keen on openness and honesty, and I am hoping that normalising what is going on will help make it less painful and difficult. But I don't think that our 4-year-old really understands time, weeks, months, years, or the future. Going to the new school on "Monday" is a difficult concept, unless Monday is tomorrow (which it now is), in which case I think we can just about communicate it. Anything that is not today or tomorrow is, I think, incomprehensible. So we don't think it would be wise to say "the doctors say Daddy's likely to die in a year or two". We also felt worried about mentioning the notion that what's wrong is "in Daddy's tummy" lest other people's tummy-aches become a source of anxiety. (Nevertheless, we told Torrin where the doctors were looking with their camera when I had the laparoscopy, and showed him the three scars after the operation.)
Some lovely friends gave us some straightforward advice about what to say, and we have taken it: we simply say "Daddy is ill, and the doctors are giving him medicine to try to make him feel better."
Girton playground - photo by Torrin G MacKay
We've also told Torrin that the medicine makes me feel tired. And he's met some extremely kind staff at the hospital who told him that the medicine will probably make my hair fall out, and who let him play with the electric up-and-down buttons on the bed in an examination room.
And I decided to try to make the "illness" and "medicine" a bit less nebulous by telling Torrin that there is a lump on the side of my tummy, and that the medicine is trying to make the lump smaller.
At some point I'd really like to normalise the whole situation, talk about returning to the earth, and take Torrin to the woodland burial park (on a non-burial day) to play there and make it a familiar place where we have been together.
And then keep on living.    But I think it will be a while before that's possible.
Meanwhile, here is what Torrin said to me yesterday morning: he burst into my bedroom and said "Daddy, it's wakey-up time, and today we are going to have a party to celebrate your illness!" 
That's the spirit!

Chapter 9 - cycle two, day eleven

For my second cycle of chemotherapy, I have switched from "EOX" to "ECX", which means that my "day one" infusion involves a longer infusion of "C" (cisplatin) in place of "O" (oxaliplatin).
The good news is that this switch has eliminated, as hoped, most of the pain and grisliness of the first few days of the cycle.
The bad news about cycle two is that I've felt washed out for the whole of the first ten days of the cycle. Today, day eleven, is the first day that I have felt at all perky. I've had a runny nose for most of the ten days, and I've been feeling as exhausted as I felt when I had anaemia, a couple of months ago; but now I'm not anaemic.
During cycle one, I had a lot of days when I had fun, made plans, and did good work.
For the first ten days of cycle two, I'm disappointed to have done far less. I've achieved a few tasks: I've bought dozens of favourite books via amazon, to turn into presents for Torrin and Eriska. [The website oldchildrensbooks was very helpful in tracking down books for which I had no memory of author nor title.] I've fixed stabilisers on one of Torrin's bicycles, at his request. I met Conrad Wolfram - lovely chap - and Simon Peyton-Jones - lovely chap too - and discussed an ambitious software project that I'm working on with two colleagues from DECC.
If the future cycles wash me out as much as cycle two, I'm going to be sad.  Anyway, hopefully today is the beginning of a fresh spell of perkiness.  

Friday, September 11, 2015

New release of Dasher4.11 for windows

To my delight, Ada Majorek (who works for Google in California) has taken on the challenge of enhancing Dasher to make it work better for real users. 
Here are instructions for obtaining an updated Dasher4.11. (for windows)

 Latest improvements:
 1 you can turn off status bar with language selection. 
 2 It will also ask you if you want to save changes on exit unless you uncheck "Confirm unsaved files".  
 3 Also try "Composition application" style. 
 4 removed Control text from control box to reduce clutter.

How to "install"
 Download and Copy
to "C:\Program Files (x86)\Dasher\Dasher 4.11"
(feel free to rename to dasher.exe, but save original dasher.exe first)
 Download and Copy
to "C:\Program Files (x86)\Dasher\Dasher 4.11\system.rc"

Source changes:

I will be dropping new binaries here: 

If anyone would like to help maintain and improve Dasher, please get in touch (e.g. through github or by commenting here).
PS - I just tried the latest version of Dasher for Android, and found that it is awesome - it has lots of features (in its Control mode) that have not yet made it into the windoze version.

More details for anyone else who wants to join in the development

Ada says:
There is original source under

I sync with original repository whenever I see changes.
So far there were only non-conflicting changes. I believe ipomoena repository is latest code.

Eventually I would like to push my changes back to GNOME repository. Maybe after it stops crashing at exit.

I will copy/paste discussion about features to github tracker.
We can hone final design in there. One by one. 

I know nothing about main installations for windows. I converted Visual Studio solution file so it builds dasher.exe, but installation targets are broken.

Do you know how to fix install targets?

Thanks Ada!!!

Tuesday, September 1, 2015

How to take apart and fix a Brio electric locomotive

Favourite electric engine number 7 started working only intermittently. Electrical fault? Carpet fluff in the gears? This photo blog details how I fixed it.

Thursday, August 27, 2015

Unexpected signs of malignancy

Chapter 1
Bedside manner is an interesting thing. How should a doctor tell you things about yourself? How should you pass on information to friends? How should I write this blog post?
My doctor told me something on Thursday 16th July 2015, and I'm going to write about it here. I noticed that my doctor told me in a slightly oblique way, flying past the central topic a few times, using slightly technical language, and emphasising how unexpected the information was. Somehow, this emphasis on the unexpectedness of the information made it comfortable to absorb.
Here's why I was visiting the doctor: I'd been to see him two weeks before, because I was feeling unreasonably exhausted - even walking up one flight of stairs was difficult; he had done a blood test, found that I had anaemia, and had referred me to the hospital for an endoscopy, which I'd had on the 9th of July. (Looking at the stomach was motivated by a history of stomach pain over the past couple of years.) The endoscopy doctor had told me, on the day of the endoscopy, that I had a stomach ulcer. The Thursday-16th-July meeting was for me to hear more about the results of the endoscopy.
My doctor got straight to the point: tests had been done on biopsies from my endoscopy; the letter from the hospital said the ulcer showed signs of malignancy, most unexpectedly.
"Malignant adenocarcinoma", he said.
That's a cancer of the glandular tissue, he said.
"So you need to go for a CT-scan tomorrow, to get more information. There's no reason to think it has spread at all. And in the absence of information about the grade (histology) and the stage (degree of spread) it's hard to say what treatment will be recommended; but almost certainly stomach surgery will be involved, soon. I need to take blood today for a kidney-function check before the CT-scan. Then next week after the CT scan, a multidisciplinary team will meet to discuss all the results and make a plan."
He also said "you could drive yourself crazy reading about this on the internet"; he encouraged me not to do that, but to wait to hear what the hospital team said.
So that was it. Unexpectedly off to hospital for an unexpected CT scan (cool!) to investigate an unexpected cancer on a mildly surprising stomach ulcer.
Many friends to whom I have told my news in the last month have said "you must be devastated"; but I didn't feel devastated. I just felt "ok, that's the way things are"; I started adjusting my plans to take into account the new information. Friday's trip to London had to be cancelled. Which Summer holiday plans would we need to change? Which engagements might I need to cancel? Should I stop trying to raise research funds to build up a new research group?
I found Ramesh in the village hall and we walked home together, pushing Eriska in her pushchair.
I did a little bit of reading on the NHS website about adenocarcinoma of the stomach. The probability of surviving stomach cancer is not great, as this Tufte graphic makes clear.
"But hey, if only 20% survive 5 years, I aim to be in that 20%", I figured.
Naively I thought "almost certainly stomach surgery will be involved" implied I should be planning for a couple of days in hospital some time in August. A friendly doctor disabused me of this notion however - the normal treatment for early-stage stomach cancer is surgery to remove some or all of the stomach and all nearby lymph nodes, and it typically takes at least a 10-day stay in hospital until the digestive system recovers sufficiently from this insult to work at all; during those 10 days, you are fed through your vein and a vacuum tube is put down your nose to ensure that nothing gets beyond the oesophagus. Hmm, that doesn't sound fun.
I found an internet discussion group for people who've had stomach surgery for cancer treatment. Lots of positivity about the eventual return to near-normality.

Chapter 2 Off I went for the CT scan. What a wonderful Siemens machine! A whizzing circle. And a nice clinical scientist who set up the injections and told me that as it went in it would feel as if I had wet myself, but don't worry, you won't have. (She was right.)
On Wednesday 22nd July I met some members of my multidisciplinary team. They said that the CT scan had not resolved the degree of spread; it looked like several lymph nodes near the stomach might be cancerous, and perhaps one lymph node near the aorta; and there might be something in the liver but probably not; so they wanted to do more scans and a laparoscopy to pin the situation down. An MRI scan of the liver, to check that there was nothing there. A PET-CT scan of the chest to investigate the lymph node near the aorta - this would require special finance-paperwork because it is a non-standard test. And a laparoscopy, which means inflating the abdomen with CO2 and putting a camera in for a look around, under general anaesthetic. These things would probably take two weeks to complete, because the scanners are in demand.
After these investigations, the team would then recommend one of two courses of action: either
1. treat stomach cancer with chemotherapy and surgery from mid-august (start of chemo) to roughly november 17 (surgery) followed perhaps by more chemo; all with the intention of cure. The surgery would remove some or all of the stomach (and based on what I'd read, and the location of my ulcer, I reckoned probably 'all' was the right thing to expect)
2. just chemotherapy, no surgery; with the intention to improve/extend quality of life but not to cure. [don’t bother with surgery because too much spread].
So the one fairly certain thing seemed to be that I would be in for chemotherapy fairly soon.
After meeting the gastric consultant and nurse specialist, I met a dietician, then the dashing surgeon who was going to do my laparoscopy and (under plan 1 above) my stomach surgery.
His bedside manner was very direct. After the laparoscopy, he said, we will know whether it is good news or "doom and gloom". And in the good news scenario, he would remove my stomach. Yes, the whole thing. He wasn't bothered with hedging about any possibility of removing just part of it.

Chapter 3
We nipped away for a brief holiday. The scheduling of the two scans and the laparoscopy was chaotic but in the end all three took place very neatly on Monday 3rd and Tuesday 4th August. And as I came round from the general anaesthetic on the Tuesday afternoon, the dashing surgeon came in with a bundle of photos he'd taken and with his direct bedside manner.
"You remember I said the results could be anything between good news and doom and gloom? Well, I'm afraid it's doom and gloom."
There are secondaries all over the peritoneum. He showed me two of the pictures, which showed a thin white layer of tissue covering much of the diaphragm. He said he reckoned that without chemotherapy I might have roughly 12 months to go, and the chemotherapy might extend things by 6 months or so, but was unlikely to make me last more than 24 months.
My main reaction was "hurray! I get to keep my stomach!"

Chapter 4
At this point I started telling more friends and colleagues the situation. I emphasized "I am feeling fine and enjoying eating well in order to build strength." Ramesh and I both felt determined to have some fun. On 5th August I wrote "There is still an option of having palliative chemotherapy, but I am not sure whether that will be a good choice, since it would eat into weeks or months of valuable time now in exchange for perhaps just a few months of extra time later; I’ll talk to oncology specialists at Addenbrookes today and see how they see the pros and cons." One of my main reasons for hesitating was my perception that I was feeling fine right then, and August and September seemed a fantastic opportunity for having some fun. Chemotherapy would spoil that opportunity. Was it worth it? Could I delay the chemotherapy a few weeks?
I met my gastric consultant again, and met the head of chemotherapy at Addenbrookes, who confirmed the surgeon's rough estimates about life-expectancy. He recommended that I take the chemotherapy immediately, even though the median extension of life by chemotherapy was only about two months; I asked about the loss of quality of life during the chemotherapy; he said the loss of quality was "only 20% or so", and that the expected return (in terms of the area under the quality-of-life curve) was greater.
What about the PET-CT scan and the MRI scan? The MRI scan had shown nothing in the liver. And the PET scan didn't show anything - apparently my cancer doesn't show up at all. And they said that it hardly showed up under the original CT scan either.
I agreed to their recommendation of "EOX" chemotherapy. I had one week of rest to recover from the laparoscopy (which left the tummy surprisingly sore for several days), then the following Thursday I was back in the hospital for...

Chapter 5 - the biggest red syringe I've ever seen
It looked like something out of an Austin Powers comedy. The nurse kindly squeezed it in. Then put me on the drip to put in the second cytotoxin. Then two hours later sent me home with my huge bag full of pills.

Oh, before I tell you about the chemo, I should insert a little addendum to Chapter 4.

Chapter 4b - the last minute hesitation
It wasn't "denial" or wishful thinking, but in the final day before starting chemotherapy I found myself really concerned about the possibility that the whole thing was a big false positive. After all, they had told me that the CT scan showed very little, the PET scan showed nothing, and the MRI scan showed nothing. The only 'positive' evidence we had to go on was a histologist's report from the gastroscopy saying "malignant adenocarcinoma" and the photos and expert judgement of the surgeon that what he saw was definitely secondaries all over the peritoneum. But what if I have an unusual-looking peritoneum? And could the histology results have been mixed up somehow? A bad histologist? Specimens mixed up? It would be stomach-churningly terrible to undergo chemotherapy if in fact I didn't have cancer! I hadn't seen any data with my own eyes that really convinced me. I was only agreeing to treatment because I trusted the NHS staff. But I really wanted to feel more convinced myself. (My head of department had just told me a few days before about a friend of his who had a misdiagnosis of cancer.) Thankfully a friendly doctor suggested what to do - certainly, he said, samples would have been taken from the laparoscopy too, and they should have been tested by now; I could ask about the histology results. So I did that, and was told that those biopsies were indeed cancerous too. As I said, I wasn't in denial. It's just that to believe things you need either data that you understand or you need complete trust. I still wish I had seen more of the raw data with my own eyes. I like data. Anyway, with both the independent histology findings, I was happy to go ahead.

Chapter 6 - Chemotherapy - it's not nice, but I think I shouldn't complain. It's much worse for some people. Here is a probably-too-detailed account of Side-effects and other recent history.
1. During my first (EO) infusion I had no side-effects for the first 90 minutes, but during the final 30 minutes or so, I had cramps in my infusion arm, and weird sensations in the out-facing surface of that arm (see point 4 below).
2. Some of the infusion arm’s veins were painful and I still noticed slight vein pains (if I looked for them) on day 13.
3. I experienced some of the predicted (neuropathy) side-effects: my fingertips had sharp pins and needles sensations, especially in cold situations; this lasted a few days; my feet also had cold-induced pins and needles, for two days. My tongue was very cold-sensitive for the first couple of days and remained somewhat cold-sensitive (feeling like a puffy sock) for about 5 days. After 7 days the tongue returned to normal.
4. I don’t know if it is part of the neuropathy syndrome, but my infusion arm’s out-facing surface remained strange for about 7 days. During the first 4 days the skin and hairs were very sensitive to the touch; it felt like being stroked with a cheese grater - all over the arm, and especially the hand. By day 7, this cheese grater sensation was mainly confined to the back of the hand.
5. I didn’t have strong feelings of nausea.
6. I took steroids for 2 days as instructed. My stomach had some ups and downs which were eased along by senna and lactulose.
7. My mood became quite dark on days 1-3, then I perked up again by day 5 onwards.
8. I feel tired a lot of the time, and spend lots of time snoozing and sleeping.
9. I got a sore throat on day 11 (Sunday 23rd) and then sore throat and cough on day 12; the oncology clinic instructed me to get antibiotics from my GP and to suspend taking the "X" (capecitabine) for a couple of days while I get over the cold. This cold reached its worst on Wednesday 27th, and now (early hours of Friday) I think I am getting over it. (Increased vulnerability to infections is one of the expected side-effects of the chemo.)

How I felt about the side-effects.
I didn’t enjoy the pins and needles feeling, but if it always were to go away after 5 days, that would be ok. However, the medics have indicated that the neuropathy is expected to worsen over subsequent cycles. So I am going to talk to my doctors about switching to a less-neuropathic alternative to oxaliplatin at the next cycle this Thursday coming. The down-sides of the alternative are “longer infusion, more chance of nausea”.

Chapter 7 - What's next
There are probably going to be eight cycles of chemotherapy. Each cycle lasts three weeks, starting with a Thursday infusion, followed by 21 days of pill-taking. Eight threes is twenty-four, which is roughly six months. Given how I've felt during the first 14 days, I expect I will feel fairly tired for much of the next six months, and I'll probably spend most of it at home or near home. So the having-fun plan is focussed in the Cambridge area for the near future, with aspirations to do some having-fun further afield [perhaps on a Scottish island or two] about February, March, or April.
I'm still feeling fine, and as I shake off the cold I am beginning to feel really perky again. I've got a great appetite. My time spent snoozing is happy time, usually accompanied by radio 4 comedies. I'm spending a lot of time listening to music and transferring music from CDs to my computer and my smartphone, so that I can have favourite music wherever I am.
The biggest weight on our minds is the question how to prepare for helping our children (aged 4 and 1) through whatever the next year or three throw up.
Here we are... we are all happy!

I'll add another blog post here at every three weeks or so, to keep you updated.
Thank you to our dear friends and relations for your support!

Wednesday, April 15, 2015

Newcastle-under-Lyme School, Form 5 beta, 1982/3

My form teacher and biology teacher (Bill Beatson) sent me this nostalgia-inducing photo of my class. We were 4th years? No, 5th years. The school had just started turning from a state school into a private school; all but two of this form were state-funded pupils.

Tuesday, January 27, 2015

Public transport & cycling orbital for Cambridge

I have long thought that West Cambridge (and Northwest Cambridge, now that it is being built) should be connected by fast public transport to Cambridge railway station and to Addenbrookes hospital. The rough map above shows a proposed route running (from NW Cambridge) East to the Science Park and the new Chesterton Junction Railway Station; and (from West Cambridge) south alongside the M11 to Trumpington and the guided busway. This route would connect to both the Trumpington and Madingley Road Park-and-Ride sites.
If there were a nice cycle-path along these routes too, it would provide pleasant commuting options for people who live outside Cambridge to get to work at the West Cambridge, NW Cambridge, or Science Park sites.
The part alongside the M11 could have a nice view of the Cambridge wind farm that I visualised in June 2009. A 36-turbine wind farm would produce enough power, on average, to power the University's Departments and Offices (not including the Colleges). I think that an arc of turbines alongside the M11 could make an interesting icon.