Monday, November 9, 2015

Time off for bad behaviour

Chapter 12 - a welcome break between cycles 4 and 5

Today I went to the clinic for my pre-infusion check-up and to my delight my symptoms [exhaustion] have been bad enough that, again, I get to have a one-week delay and indeed more than one week off from chemo drugs. Hurray!

Other cancer news... I had a second CT scan during cycle 3, and heard the results today. The purpose of the CT scan was to try to measure the progress of the cancer. Some people have cancers markers that can be measured weekly (e.g. the concentration of something in the blood), but I was told in the first couple of months that I don't have any markers, and the cancer didn't really show up at all on the first CT scan, so there was little expectation that the second CT scan would give much information. However, three things did show up:
a) the elasticity of the stomach has changed; in scan 1, the stomach didn't distend when I drank the obligatory 4 glasses of water; in scan 2 it distended much more. This is deemed a promising sign of the chemotherapy working as intended.
b) the lymph nodes that showed up enlarged in scan 1 are a bit smaller in scan 2.
c) there is a new secondary in a vertebra in my spine.
So, a 2-1 score, overall.

Other non-cancer news... We were privileged to have two memorable movie-nights-out: Last night we went to London for the UK premiere of HUMAN, the awesome new film by Yann Arthur-Bertrand [a big thank-you to Nanny for baby-sitting all day!]; and a couple of weeks ago a local Cambridge start-up [FeatureSpace] invited us to the Cambridge premiere of Spectre. Fun!

Yann Arthur-Bertrand presents HUMAN Ramesh and David dressed up as Bond girl and Bond

Sunday, November 1, 2015

The fourth cycle of chemotherapy

Chapter 11 – Mid-way through cycle 4

Cycle 3 finished without any problems, except for ongoing pain in the infusion vein in
my left arm. Sometimes the thought that I voluntarily connect my vein for several hours to a plastic tube passing litres and litres of chemicals strikes me as terribly odd and queasy-making.

Cycle 4, right arm.

Today is day 11.
This time I haven't had much in the way of runny noses and coughing, but feeling-weak-and-washed-out has lasted much longer than the canonical "first 4 or 5 days" that I was hoping for. I feel breathless and exhausted when I walk up two flights of stairs. It's a lot like when I had anaemia (a few months ago) but going by the blood test I had 14 days ago, I think it is unlikely that I'm anaemic. Presumably the whole body is just being successfully beaten up by the chemo. My leg muscles ache as if I have got sports injuries in all of them.

I've been keeping myself busy (1) giving one lecture for a new MPhil course in the department;
and (2) working with other local parents on The Campaign for Safer Cycling
and Walking to and from the North West Cambridge Development
I have made five youtube videos and learned how to put them into a playlist.

I've been using Facebook and Twitter, and our Petition has gathered over 300 signatures, including roughly 100 from University members.

I've been a bit manic about this campaign, and haven't rested enough. Today I stayed in bed all day.

So:  last cycle I kept my mind off cancer by working on the climate-cooperation Comment in Nature, which seems to have fallen on deaf ears; this cycle, I kept myself busy by campaigning for Cambridge University to actually build decent walking and cycling links, like it said it would do in its grand fluffy sustainable plans for the development. I've probably overdone it a bit. I don't have much oomph in my tanks. But I am optimistic that Cambridge University will hear our message and do the right thing.  If they don't then I genuinely fear that one of the children at the new University of Cambridge Primary School is going to be killed on Huntingdon Road.

As day 11 gives way to day 12, I find I have a steadily growing sore spot on my lips.
Tomorrow I will go to see my GP and ask him if all this aching body stuff is
normal, and is there any way to stop my lips from falling apart?

Then on day 13 I will put on my gown and will go to the Senate House to make
a "remark" at a "discussion".

Monday, October 12, 2015

The third cycle of chemotherapy

Chapter 10 – Mid-way through Cycle 3
As I said in my last post, my doctors suspended my chemo pills for a little over a week, and delayed the cycle-3 infusion by one week. Wow, it was lovely! Within 24 hours of stopping the pills I could feel my body's self-healing working again. The mouth ulcers healed up. My runny nose stopped being runny. I would be in great shape if it weren't for the chemo!

In the one-week gap, the hospital arranged for me to have an extra gastroscopy for the benefit of a research project I'm enrolled in. The project (called OCCAMS) is about attempting to measure the progress of a cancer by measuring tiny DNA signals in the blood. (Whereas some of my friends with cancer have cancer-markers that can be measured on a weekly basis, to reveal how things are going, in my case we are flying blind - there is no measure of cancer-up or cancer-down.) To help them use my blood in the study, they wanted to genome-sequence a sample of my cancer cells. So I popped in to a special research ward for an extra gastroscopy, which went smoothly. I'm looking forward to learning which mutation started the cancer - one fascinating thing I learnt about cancer is that a single gene, called TP53, is mutated in more than 50% of human cancers! Conceivably, knowing about the genome of my cancer might help me look into novel targeted therapies that might work better than the blunderbuss that is conventional chemotherapy.

Cycle 3 has been going a bit better than cycle 2. I have developed a runny nose and a cough again, but not quite so runny and cough as last time. My left-arm vein, which they infused me in for cycles 1 and 3, is sore and tender. I feel quite tired a lot of the time, but I have been getting some good work done. The pinnacle of the last year, from the work point of view, came last Friday when I went down to London for a press briefing for a Nature Comment piece that I wrote with Stoft, Cramton, and Ockenfels. As I said on my other blog, I view this article as the most important thing I have ever written. When I wrote Sustainable Energy - without the hot air, I wanted to improve and transform the public discussion of energy options, and I was delighted with the outcome; but that was just a book about energy arithmetic, and lots of other people have explained energy arithmetic before me and since me. Our Nature Comment, in contrast, makes a point that very few people are making, and if people listened carefully to our argument, I think it could be a game-changer for international negotiations.

I was really happy with how the press briefing went, and the Comment was published today. I'm grateful to the staff at Nature for recognising that we had an important message and helping us express it clearly in one and a half pages.

Anyway, halfway through cycle 3... What's coming up this week is a pneumonia vaccination, a check-up with my GP, a flu vaccination, and a CT-scan at the hospital to measure the unmeasurable (i.e., my cancer, which as far as we know doesn't show up on CT scans).

Apart from these four exciting outings, I'll mainly hunker down and work at home.

I'm eating well, and have a good appetite for snacks during the day as well as mealtimes. I've got my old juicer working and have been making lovely apple and carrot and ginger juice daily. I still feel tired and grey much of the time, and I do find myself wondering whether I'd be better off stopping chemotherapy.

At some point I think I will put some effort into researching the latest news about targeted cancer therapies. I've heard about quite a few - monoclonal antibodies, aspirin, warfarin... - but right now I can't be bothered to do the reading.

Instead I'm working on another work project - a completely different project, all about statistics, international standards, and how poor statistical protocols incentivise falsification of data.

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.