Wednesday, April 27, 2016

Tuesday, April 12, 2016

Appendix Three- Correspondence, Visitors, and Gifts

Thank you so much to lots of lovely friends who have offered to visit me in hospital!

Ramesh and I are wanting to keep life really simple at the moment, and for me, rest in bed is crucial at the moment; so we are declining most visits for the next few days at least.

If you would like to visit me, just send me an email or a text. I am typically able to read both emails and texts quickly, and I can easily send brief responses by my phone. But as I said, for the time being, we are accepting very few of your lovely offers of visits.

When it comes to gifts, space is very tight on the ward, and my appetite is a fragile flower, so please don't bring any gifts. In case it is helpful for there to be an alternative gift-giving channel, I'll set up a JustGiving site, dedicated to the Arthur Rank Hospice Charity.

Thank you for all the warm messages from everyone!

I've now spent 7 days and 7 nights in Addenbrookes.

My medical news is we are still waiting for lab results to come back from last Friday's bronchoscopy, and I am still waiting for decisions to be made about what tests might be done on my bones or bone marrow. If I lie still in bed, I feel OK. Anything more (eg peeing) tends to feel like breathless hard work. This situation seems fairly stable, with no strong signs yet of weakening nor of recovery so I imagine I'm likely to continue to be in Addenbrookes for another week or two.

Sunday, April 10, 2016

Appendix Two - An Open Letter to the Directors of Addenbrookes

To Jane Ramsey and Roland Sinker and the Board of Directors of Addenbrookes

Dear Sirs and Madams,

the hospital is a great one, the staff are wonderful, and I'm grateful for everything the NHS does for me here.

But I do have just one impassioned question and plea...

To put this question in context, I'd like to note some of the excellent features of the wards: every bed has its own light, with two brightness options, and so the patient has some control of their local illumination. Every bed has its own oxygen supply, so that patients like me can have a steady dose of oxygen; and again this supply features a control such that the dose rate can be controlled to the needs and comfort of the patient.

Another aspect of comfort is the thermal environment


Let me describe the room.

I share a four-bed bay with Mr Snooze, Mr Crutch, and Mr Fisher; Mr Crutch and I have the beds by the two large windows, which face south east and have an area of 10 m2 or so. The lower four panes of the windows are all openable to a distance of about 5cm. In front of and slightly taller than the window sill are two killer robots., also known as enormous radiators. These 1.6m wide times 1.2m high impositions steadily belch out, I don't know, kilowatts of heat into our room. [I bet this heat counts as wonderful "green" heat and gets special government credit thanks to being produced by combined heat and power... but that's another rant.]

In the morning if it is a sunny day then the windows (which I think are roughly half-silvered) must be letting in another 5 kW or so; there are internal blinds so this radiation can be diffused, but once it's in, it's in, just like the heat from the killer robots.

If the windows are closed the room's temperature becomes unbearable.

So it is clearly the civic duty of Mr Crutch and me, the guardians of the windows, to attempt to use these cracks to remedy the jungle sauna as best we can. We don't discuss it, we just get on with it. It is not easy. For one thing, Mr Crutch has cancer in his spine and has no use of his legs at all. So every window operation for him involves deft manipulations of his crutch to get the metal clasps rotated and move the window in or out. [Mr Crutch is a youthful, loud, talkative great-grandfather.] As for me, getting up to adjust the windows is difficult too - "my" two windows are about 1.5 m and 2 m away from my right shoulder respectively, so if I'm going to make adjustments I have to get up, and that is about as much effort and exhaustion as a 100m run.

The trouble with our task of opening the windows is, depending on the external wind direction and temperature (which can be an icy midnight April breeze), the flow of air into our room can be mild or arctic. It is quite possible to overdo it and end up creating a stiff draught blasting across the room, freeezing our exposed bodies. (None of us inmates often sleeps under our sheets and blankets. One would boil.)

Moreover the rate of airflow through the windows completely changes when the bay door is opened, which happens on and off for fifteen miinutes at a time in the night.

So, we do our best - we make 1-cm adjustments of gaps. We pull the blinds about when the sun comes up, and wonder what to do when the blinds billow and flap in the breeze.


How about spending some money to fix this issue?
A former doctor at this hospital tells me that there are some controls; indeed that at one point a single thermostat in one visitors' room was responsible for controlling heat flow to the whole of the rest of a ward.

The situation is just ridiculous. Thermal comfort is crucial to recovery, to sleep, to well-being.

The hospital has shelled out thousands of pounds per bed on useless telephone-TV devices, which sit unused above every bed, swithing themselves on automatically, glowing away and causing light pollution. The existence of these absurd telephone-TV installations proves that the hospital is able to retrofit modern technology into its wards.

It just happens to tbe wrong technology and a waste.

So how about spending a similar amount of money, per bed, on making sensible, patient-centred controls for maintaining a pleasant ambient temperature?


There are smart engineers in Cambridge and elsewhere who can figure out cost-effective solutions. Even just thermostatic radiator valves would be start and would cost next to nothing. But I'd recommend going to an organization like Max Fordham to get a well-designed solution.

Please could you do it soon, because my back is simultaneously melting while my ankles are turning to ice in the morning breeze?

Prof Sir David J C MacKay

Appendix One - Horlicks

So it turns out that "Perhaps my last post" wasn't.
But I liked the idea of having an ending, so the posts that follow will be "Appendices" to my completed cancer story. OK?

This post is about sleeping in hospital. For me, sleep is so crucial for health, but in our ward, everyone has to be checked three times in the night for blood pressure and oxygen saturation and pulse, so (given how my steroid doses make me weird and sleepless anyway) I have never had more than one quarter of a night's sleep in the last six days in hospital. And it's not just the personal checks that wake one up. The ward is always full of lights going on and off, doors opening, special mechanical beds that make fizzing electrical noises and clunks for hours on end, and an army of crucial machines each with their own bleeps, pings, and klingon photon torpedo sounds.

Tonight, Mr Snooze who is in the bed diagonally opposite me had an insulin check-up using the special bleep clatter bang machine, with the optional mandatory bright light pointing straight in my face for one hour starting from 4am.

(We are four inmates in this bay of ward D9. Mr Snooze is very genial and spends much of his time successfully asleep. I'll tell you a bit about Mr Crutch and Mr Fisher in another Appendix.)

So, this post is about coping with the sleep deficit. Basically, I don't cope, and yesterday morning before I wrote "Perhaps my Last Post" I spent 10 minutes crying like a soggy jelly with the nurses who had come to give me my 6am injections, just crying with the cumulative sadness of being stuck in a sweaty bed and unable to sleep for (at that point) five nights.
The nurses were lovely. I'd tried various sleeping pills over the last week and they hadn't been any use for me. So, they suggested, how about going for something simpler - a nice milky cup of Horlicks - just ask for it.

This was a plan! So in Sunday night I rejected all the sleeping pills and planned ahead. Happily, I felt sleepy enough to go off unaided at 10.30pm, so I decided to ask for the Horlicks when the 1.50am observation came along, to see if that would sink me a second time.

My 10.30pm sleep didn't last fantastically because of the appalling sauna conditions that developed in our bay - more about that in Appendix Two, I think!

I woke up roasting as if I was in a desert hot-box.

Managed to doze a little more.

Then came the time - Rang my magix nurse bell... "Annabella," I said, "please could I have a milky Horlicks to help me sleep?"


Ah, she's from Barcelona. [To those with a politically correct sensitivity, I immediately apologise for my racist joke and retract it; all complaints to John Cleese as normal please.]

I explained about Horlicks and Annabella kindly went through two iterations of making Horlicks, the second of which was warm and milky and quite good.

Unfortunately the Horlicks didn't do the job, and I laid awake trying to sleep for over two hours, eventually giving up and watching two episodes of Big Bang Theory to try to reset myself.

Then it was the aforementioned visit of the bleep clatter bang machine for Mr Snooze's insulin, with the gestapo light pointing in my eyes, so after a while I decided to write this blog post.

It is a pretty pink sunrise.
And oh, look, it is 6am, so it is time for Katie to come and take another set of observations.
Beep-beep=beep, beep-beep.
Beep-beep=beep, beep-beep.

Perhaps my last post - we'll see

I noticed that the posts of a friend who died of cancer trickled away to a non-conclusion, and this seems an inevitable difficulty, that the final post won't ever get writ.
I'd like my posts to have an ending, so I'm going to make this my final one - maybe.
While the doctors haven't expressed an opinion, I think it's possible I haven't got long to go, because I've lost 15 kg, and last Friday's CT scan showed that I've got secondaries on the go in my bones (as we already anticipated from the high ALP levels measured over the past weeks); my platelet count is very low, so they suspect that my bone marrow may be having trouble with cancer cells. On Monday they propose to take a bone marrow sample to find out what's going on. My extreme breathlessness continues - lying still in bed is fine, but getting out of bed onto the commode and back feels afterwards rather like a marathon. Maybe I'll pull through, but let's tentatively wrap up my blog-posts now.
There's lots I could write, but the way I'd like to stop is by pointing you to the writings of someone else. Max Edwards wrote a piece for the Guardian about his own cancer, and much of what he writes resonates for me. He was a remarkably eloquent writer.
Thanks for reading!

Saturday, April 9, 2016

A long stay in hospital

After my CT scan at Addenbrookes on Friday 1st April, I was allowed home on strict instructions that if I got worse I should come back.
The theme of the next nine days (1-9 April) has been breathlessness and poor sleep. I spent a couple of days at home, taking steroids, taking anti-emetics, taking a sleeping tablet called zopiclone, which didn't seem to do any good, and trying to manage constipation with Senna and Movicol.
For the first time my phlegmy cough started to have a little pinkness or blood in it.
On the Tuesday the Marsden had asked me to come down to London for a check-up but over the weekend and Monday I was feeling gradually worse, with even just getting dressed being a tough enough piece of exertion that I was left breathless.
On Tuesday 5th April I checked into Addenbrookes and started my longest ever time in hospital. My main condition is called pneumonitis, and it has hit roughly 3% of patients who have received the wonder-drug Pembrolizumab in earlier clinical trials. Pneumonitis can work in various ways, one of which is that the body's immune system decides to have a go at the lungs, which therefore have more space occupied by T-cells and less space occupied by what lungs are meant to be full of (eg blood, air, and very thin layers of tissue).
The doctors' plan was to try to treat the pneumonitis but at the same time to explore whether anything else unusual or exotic might be going on. In particular, do I have any infections? They preemptively put my on two antibiotics in case of bacterial infections; but they wanted also to explore other types of infection, so, lucky me, I was scheduled to have a bronchoscopy to wash out fluid from my lungs and see what bugs or fungi could be fished out. All this was going on during a two-day junior doctors' strike, so progress was slow, but no-one minded - they wanted to focus on settling my lungs down, and the bronchoscopy could wait a few days.
No-one minded? Well, not quite true - I don't like being in hospital because the temperature is often uncomfortable, the bed has plastic sheets that get sweaty, the bed is harsh on the body, and one gets measured every few hours of the day and night in a perpetual world of bleeps and pings.
But there is no choice. I am desperately breathless if I move around in the slightest, so in hospital is exactly where I need to be, with an oxygen tube in my nose all the time.
the view from my bed when I sit up

Breathlessness is not my only problem - they detected that my platelets went very low, and on 6-7 April gave me a platelet transfusion and two pints of blood too.
Once Friday 8th April arrived, it was time for both a CT scan and the bronchoscopy.
The staff at Addenbrookes are really super, but there was one painful mix-up on the Friday morning. As I was about to be wheeled through the hospital to have the CT scan, the blood technician came up and said I needed a new bigger cannula. He tried several times, it was very painful, and he made a huge blue explosion in my right arm and eventually gave up. It would be left to the CT scan people to put in the mega-colume cannula... except when I got there, they said, no you don't need any cannula at all for this CT scan! So a lot of painful stabbing was for nought.
On Friday from 11.30am until about 4.30pm I was 'nil by mouth' in preparation for the bronchoscopy, which I was dreading. I don't like having things poked down my throat. The last time I had a gastroscopy, for the benefit of the OCCAMS research study, I was quite heavily sedated and it was ok. But to my surprise the sedation for this bronchoscopy was much lighter, and I didn't enjoy it at all - but at least it was pretty brief, and they said that their washes achieved what they wanted - a bunch of salt water to send off to the labs; and as a small gift for me, I got to take away a load of salt water in my lungs, which I coughed up for the next couple of hours.
Adding the bronchoscopy to my pre-existing pneumonitis significantly increased my breathlessness, so for a good few hours I was put on a higher oxygen flow.
Every night at the hospital has been a sleepless night, driven especially by the steroids, my main treatment, which make my mind wild. And also by the sweatiness and discomfort of the bed.
Happily on the Friday night things got a sliver better: as part of my trip to bronchoscopy land, my bed had extra emergency canvases inserted between mattress and me - these significantly reduce the stickiness of the mattress. Also it was a very cool night outside and I was able to titrate the ward windows by my bed to have a comfortable air temperature. And most important of all I persuaded the doctors to change my timing of steroids so that from now on I will have them only in the morning.
I still didn't sleep at all well, but it was great to not have mental whirlwinds rolling at the same time as I struggle with pillows and posture and back pains and neck pains.
A friend very kindly brought in a tablet with lots of movies on it, and a high point of the last 24 hours has been to watch most of the first season of Breaking Bad, which is both a remarkable series, and also somewhat apposite, given its central character has cancer and is trying to juggle the balance of his remaining life. I'm relieved that I'm not having to consider the choices he has to make (e.g., which corpse to get rid of first, once his life has become embroiled in drug-manufacture and supply). It is a gripping show.
It looks like I will be in hospital for a good few days and possibly even weeks: my condition has probably stabilised, but the slightest movement (eg going to the loo) makes me completely breathless, and there are not yet any convincing signs that this is getting better.
The next step is to wait for the lab results to come back from my encounter with the lung-washing lady.
Then the doctors will have a think about whether they will try giving me any other medications in addition to steroids in order to get my lungs to settle down.
Looking at the Pembrolizumab trial results in the cases where patients developed pneumonitis, it seems there is a huge range of recovery times, ranging from days to many weeks. Hopefully I will be at the lower end of the range, but based on the last five days' progress, maybe I have to be resigned to a longer stay.
We are very grateful to lovely friends in Girton who have looked after our children every day so that Ramesh can come and visit me.

Saturday, April 2, 2016

Index for the first 23 Cancer Chapters

Blog postContents
Unexpected signs of malignancy Chapter 1
Chapter 2
Chapter 3
Chapter 4
Chapter 5 - the biggest red syringe I've ever seen
Chapter 4b - the last minute hesitation
Chapter 6 - Chemotherapy
Chapter 7 - What's next
What do you tell the children? Chapter 8 - What do we tell the children?
Chapter 9 - cycle two, day eleven
Neutropaenia and other side-effects Chapter 9b - the medicine cupboard is not big enough
The third cycle of chemotherapy Chapter 10 – Mid-way through Cycle 3
The fourth cycle of chemotherapy Chapter 11 – Mid-way through cycle 4
Time off for bad behaviour Chapter 12 - a welcome break between cycles 4 and 5
Cycle 5 - getting the hang of chemotherapy Chapter 13 - Starting to get the hang of chemotherapy [Friday 4 December]
Cycle 6 - and maybe I have had enough of this Chapter 14 - Pattern spotting
Bye-bye Chemotherapy, Hello TP53! Chapter 15: starting a new life
The uncertainty continues CHAPTER 16 – MORE CT SCANS, MORE DATA
After five visits to London hospitals... Chapter 17 - mulling the lottery of clinical trials
A trial and a tribulation Ch 18 - visits 6 and 7 to London - a trial starts
Chapter 19 – other ailments
Chapter 20 – the trial ends?
Further developments, March 2016 Ch 21 - another visit to London
Snowdonia here we come! Ch 22 - an impatient patient
Wonder-drug Pembrolizumab nearly killed me CHAPTER 23 - A DOWNHILL ADVENTURE

Friday, April 1, 2016

Wonder-drug Pembrolizumab nearly killed me

Chapter 23 - a downhill adventure

As I said in Chapter 22, I have been feeling increasingly breathless. Once we got to Snowdonia, this trend continued. I also developed a heavy-feeling sluggish stomach, feeling a bit like constipation. And I had increasing difficulty sleeping. (And for many weeks I had had a phlegmy cough.) By the time these symptoms were really hitting me, it was the Easter weekend, so pretty much everything medical was closed - though a phone-call to the Arthur Rank hospice in Cambridge was helpful. With their encouragement, we phoned the out-of-hours GP, flagging up the medicines recommended by Arthur Rank to help with the stomach and the and sleeplessness. The GP came late on Sunday afternoon, and wrote prescriptions for the medicines. He was nice. But no pharmacies were open at this point, so "twas on the Monday morning..."

On the Sunday night my stomach-intransigence had upped a notch, with my first vomiting for many years taking place after I tried to eat half a dinner.

"twas on the Monday morning..."? Even then, Monday was still a bank holiday, and after lots of trying nearby pharmacies in Porthmadog and phone calling and internet searching we eventually found out that the nearest open pharmacy was in Abersoch, nearly one hour's drive away. Luckily at this point I was still capable of a restful two-hour drive, so that is what I did. None of the medicines addressed the breathlessness, however, and this continued to get worse.

On the Tuesday morning I went to the local GP in person (she gave me antibiotics in case the lung problem was an infection), and I was able to phone the Marsden and describe my symptoms. They said I should come in to their hospital and be examined and have a CT scan. I asked if I could instead go to Bangor hospital, a one-hour drive away &emdash; I had read that Bangor was an excellent research hospital for cancer, so I thought they might be able to do everything for me that the Marsden could at this stage. The Marsden phoned Bangor and it was agreed that that is what I would do. (I came to regret this.) At this point it was looking like I might be too weak to drive myself. My lovely mother has come to help out with our holiday, and she drove me to Bangor at about noon. I hoped that with clear instructions from the Marsden, I'd be able to be properly examined and treated the same day.

Let's start with some positives: the staff of the Bangor hospital were lovely, and the food was great. But when I arrived at the exact assessment unit and ward I'd been told to report to, initially I was met by blank faces, and I think often I was treated as a random visiting patient with shortness of breath, rather than a patient with specific instructions and specific hypotheses.

I made very clear when giving my symptoms and history that I was on an experimental trial of Pembrolizumab and Ramucirumab, and that a known side effect risk involved effects on the lungs. I didn't have the google result at my fingertips right then, but I subsequently confirmed that a simple Google search for "side effects of Pembrolizumab" instantly mentions "inflammation of the lung",
and the official website for the drug shows four "Serious Side Effects" of which the first listed is "Lung problems (pneumonitis)" with subheadings "Shortness of breath; Chest pain; New or worse cough".

In spite of this and in spite of instructions from the Marsden to give me a CT scan (and a couple of other simpler tests), the Bangor hospital's decision was to do just one thing at a time, and very slowly. The first thing they did was not a CT scan - it was judged too unlikely that I had a pulmonary clot to be worth doing a CT scan. The decision was to give me a chest X-ray. This took until very late afternoon to happen, by which time the consultant had left, so I was to hear the x-ray result from someone else, and stay in overnight, and hear a plan the following day. The x-ray result was duly reported to me: "you have got alveolitis". And that was that. Treatment? Nope. Manana. (Checking a few lines down on the "Serious Side Effects" webpage, the treatment advice is: Getting medical treatment right away may help keep these problems from becoming more serious. ... Your doctor may treat you with corticosteroid or hormone replacement medicines.) My mother drove off home to the holiday house past the beautiful sunset snowy mountains of Snowdonia.

Thus began one of the most uncomfortable nights of my life. Hospital beds are made for hygiene, which means plastic sheets, which create for me a roasting sauna of boggy sweatiness. So after a few minutes on my back I have to turn to my side. Then my other side. All the while my head and neck having similar misery with the sweaty pillow. I tried switching head for tail on the bed. I tried elevating the head of the bed. I went for walks. I went to the loo to let the bed cool down. And all the time a cannula niggling away in my right arm. Awful. Eventually I asked a nurse if I might take one of my tramadol pills that a GP had given me. That sent me to sleep in the sauna bog for a few hours.

And the morning came. And I waited to be seen by a doctor. When one finally turned up (another doctor, not the previous day's consultant, nor the previous day's "you have alveolitis" chap), I reminded him about the "alveolitis" statement which seemed to agree with the hypothesis that "the Pem is being bad for me", thus explaining what was going on with the breathless, and pointing to a treatment? No no, he said, you very probably have NOT got alveolitis. What? I asked if he had talked to the Marsden. He did so, and decided that he would implement the Marsden's plan, which was to give me a CT scan.

My lovely sister Janet, who is a GP, phoned up the ward and spoke to the doctor too. He said "David is going to have a CT scan - oh, no, the CT scan unit have refused to give it to him; I will have to talk to them." This other bit of the hospital, presumably having heard that the purpose of the CT scan was to resolve whether I had a pulmonary clot, judged that it was not a clinically valid test to do. My doctor had a fight with them and got their agreement. "There will be a CT scan." I asked every hour or so when it would be. "They will call you" was the answer from the nurses. I was given a second larger cannula in my left arm in preparation.

Again at about 4 or 5pm, I asked "when will it be?" - and the answer was "probably tomorrow, dear". Why had no progress been made, all day, on either diagnosis or treatment? Normally the ward had two consultants, but this day there happened to be just one, so it had not been possible for yesterday's admissions to be seen by the consultant. All such patients were expected to just sit and stew and wait another day and night. So I never heard why the diagnosis of the night before had been retracted.

By this point my sister Janet had arrived and I discussed with her what I understood to be going on with the breathlessness.

There were four possibilities I was aware of:
  1. I might have a chest infection; and this was already being treated by antibiotics.
  2. I might have a pulmonary embolism; but this was unlikely, and anyway was already being treated by the daily Fragmin injections.
  3. I might have alveolitis or pneumonitis, caused by the experimental treatment - and this would be treated with steroids.
  4. Or it might just be that the normal progression of my cancer was somehow making me very breathless - I didn't understand a mechanism for this, but my oncologist in Cambridge had said that it was possible to go downhill fast.
Looking at this list, the first two were already treated, and the last seemed untreatable, and all that was left at number 3 in the list is the idea that I should perhaps get onto some steroids. (At this point, I had reminded myself of the Side Effects instructions, thanks to my mobile phone's web browser.)

I asked to see a doctor. I was told after an hour's wait or so that it wasn't possible to see a doctor (because of the second consultant being off as mentioned above) but I could talk to the senior nurse.

I ran through these hypotheses and potential treatments and requested (a) to be given steroids as advised by the Pembrolizumab website; and (b) to be discharged from the hospital immediately. The nurse was very kind and agreed, and I ate the steroids she gave me at 6pm, and Janet drove me off past the snowy mountains and into the sunset of Snowdonia.

By this point, my breathlessness was extreme - I was panting like a dog, at least sixty breaths per minute, and feeling very run down. Sitting in the car seat was uncomfortable. If number 4 was the correct hypothesis then it felt like perhaps I just had a few days left to live, and I felt really angry that I had lost a whole precious 24 hours in Bangor hospital not being diagnosed coherently, and not being treated.

But the staff were lovely and the hot food was absolutely excellent! Got to keep things balanced.

This whole time, my stomach problems had continued, with poos emerging only very rarely, with me having very little appetite, and with my phlegm-coughing attempts occasionally leading to violent and noisy retching when my body attempted to throw up, as an alternative to getting the phlegm out.

When I got home I had a cup of soup and took a sleeping pill and a tramadol and went to bed. Our plan was to get me to Cambridge so I could be seen by my familiar doctors somehow the following day.

Remarkably, the following morning I was transformed. Clearly the steroids were the right call and had had an effect. I was still coughing and still lacking appetite, and still at risk of vomiting, but I was much less breathless. I could walk around slowly. We decided to drive in convoy with Janet to Cambridge. We packed up I was confident that I could drive our car half way to Cambridge, and we made tentative plans to drop our car half way and continue in Janet's car if necessary. But once we were under way, I reckoned I could drive all the way, and that is what we did. I was very uncomfortable for the last hour, but we were urged on by friendly emails and phonically from the Cambridge hospital, saying that a bed was ready for me in the Oncology area's Assessment Unit, as long as I got there before 6pm.

I got there before 6pm, and two lovely doctors assessed me and discussed hypotheses, further tests, and potential treatments. They took blood, and the plan was to do a CT scan, but that would be the next day. I could stay overnight or return home, as long as I got in touch the instant there was any worsening of my state. My state had got a lot worse again - the small dose of steroids given my 24 hours before in Bangor had worn off, and I was panting again - albeit with 100% blood oxygen saturation. I received a fresh dose of steroids, double the size, and went home.

My sleep was somewhat troubled by the snuggling of a Torrin in my bed (his snuggling involves a lot of foot work), but bright and early I was up and off to Addenbrookes for my 9am appointment with the CT scan.

And (after a couple of hours' wait) the CT scan showed (as expected) no blood clots in the lungs; and it did show possible evidence of "adverse drug reaction". I also requested an x-ray of my hip, to see whether I had bone disease on the go in there. The result of that x-ray was negative. Indeed the steroids or the tramadol seem to have slightly reduced my hip tenderness.

I collected my prescription of millions of steroid pills for the next few weeks, and went home.

The steroids make me wild and obnoxious but I am very happy to have a bit of a reduction in breathlessness.

My back is still bothering me, I'm still coughing, and I still have not poo'd for a long time. And sometimes I just want to lie down and groan. But then the steroids kick in and I feel able to be human for a few minutes at a time, and to write blog posts.

Here you are.

Sunday, March 20, 2016

Snowdonia here we come!

Chapter 22 - an impatient patient
The daily injections of heparin are a pain, literally. Sometimes it makes me cry. My deep vein thrombosis is getting better slowly. Walking is still painful, and driving is not completely comfortable, but we are going to go on holiday tomorrow. Below is the view that awaits us.

I'm feeling quite tired most of the time, and get breathless after small amounts of exercise. I cough a lot at night, which strains my back and rib muscles. I do sometimes wonder whether I've now started a final downward curve.

Saturday, March 19, 2016

Further developments, March 2016

Chapter 21 - another visit to London

In my last blog post I said it looked like I might need to leave the experimental (monoclonal ab) trial, because of my deep-vein thrombosis. However, on Thursday evening, the Marsden team phoned me and said that they would like me to come to London after all, with a view to giving me the Ramucirumab treatment one day late, on Friday 18 March.

So, I lined up a taxi and asked my kind travel companion Edmund if he could help me with wheelchairs and so forth for the day. British Rail did a very good job of laying on wheelchairs in Cambridge and London. We got to the Marsden before noon on Friday. After a wait, we got a wheelchair and got to the medical day unit. Then after another wait, my blood samples were taken. Then I met a doctor who had seen my blood results from Cambridge (from Wednesday) in which a very high concentration of "ALP" was a concern. She thought it was likely that given both the ALP measurements and my DVT, it was unlikely that they would give me treatment after all. Then there was a very long and sometimes uncomfortable wait for the Friday blood results to come through. It turned out that my bloods had been lost in the hospital's pneumatic delivery system. Finally at about 4pm, the blood results arrived, and the high ALP levels were confirmed, and we were sent back, at rush hour, to Cambridge.

What a pointless day it turned out to be! I would much rather have stayed in bed. And the information about the ALP measurements was already available on Wednesday.

The one benefit from the outing is that the ALP issue is now getting attention. What does it mean? ALP can mean either bone disease or liver obstruction. There are no other indicators of liver malfunction, so liver is unlikely. So the lead hypothesis, which may be investigated in 3 weeks' time, is that there is something going on in a bone somewhere.

The thrombosis is still hurting quite a lot if I try to walk. Hopefully we will be able to go on holiday soon anyway.

Thursday, March 17, 2016

A trial and a tribulation

Chapter 18 – visits 6 and 7 to London – a trial starts...

On Monday 7th March, I went to the Cambridge hospital to see my big chief oncologist. I told him that it looked like I was being accepted into the Marsden trial. I mentioned that my left arm had been giving me bouts of pain, perhaps because of the oxaliplatin treatment I had 6 months ago, and asked if I could be prescribed Amitriptyline, which my sister recommended. This was agreed. Then I ran off to do some teaching at the University - a mock select committee hearing, where the students played the role of a government department and various lobbyists, and I played the role of chair of the select committee. That was fun.

On Tuesday 8th March, Ramesh and I picked up my Amitriptyline prescription then took the train to London. At the Marsden I provided a urine sample and signed some final consent forms with one of the doctors in charge of the trial.

On Wednesday 9th March I gave my final lecture on Information Theory in Cambridge.

Then on Thursday 10th March we went down to London again for a 3pm appointment to start the Ramucirumab and Pembrolizumab treatment. There was quite a long wait, because the hospital was short staffed. The treatment got going at about 5pm.

This photo shows the tiny bag of Pembrolizumab – I think this much drug costs about 10,000 pounds.

The only noticeable side-effect of the treatment was that my blood pressure went up a bit.

After being observed for an hour, we were free to return to Cambridge.

Chapter 19 – other ailments

I've had a phlegmy cough for such a long time now, I have lost track of when it started. I started taking antibiotics for the cough about Saturday 5th March. I had a few scintillating scotomas as well in February and early March. Not painful. And I've had a perpetual roaming pain that has wandered around my body: what was at first for a few weeks a spasm in my upper back migrated down and became a severe right rib pain for a week; then it seemed to travel into my left hip, which became superficially tender so that I limped for a few days.

Then we had a delightful three-day collection of meetings: a one-day research-group reunion, and a two-day symposium on "Information Theory, Inference, and Energy" (photo below by
Photo by
On Tuesday 15th, during the symposium, my hip pain again switched sides and took up residence in my right calf. It felt a lot like a cramp.

On Wednesday morning, given that walking felt quite difficult, I decided that I should ask the medics to check out my calf pain in case it was a deep vein thrombosis (i.e., a clot in a vein in my leg). I phoned the hospital at 8am, and they asked me to see my GP and, if appropriate, get referred back to the hospital. I called the Marsden to let them know what was going on. The GP saw me at 11.20, and reckoned there was a modest chance that I did have a DVT, so he gave me a letter and I cycled to A+E at the hospital. (Walking was difficult but cycling slowly was fine.) We met the Addenbrookes Thrombosis team, who were absolutely wonderful, and at about 1.30pm I was ultrasounded and it turned out that I did have a small DVT.

So, all of a sudden, I'm a different sort of patient, and new medicine is required.

The lovely nurse took my blood samples, I had a talk to the consultant, and then we waited for the results to come back.

The recommended treatment for deep vein thrombosis for a cancer patient is Dalteparin (aka Fragmin, a heparin), which is injected daily.

The nurse showed us how to do the injection. It really hurt!

Then we went home. As I went to bed, we received a phonecall from an out of hours doctor at the hospital who had seen my latest blood results: my "d-dimer" levels were very high, which indicated a thrombosis was likely; he was reassured that I had already been given treatment. How interesting that they can measure these sorts of things from a bit of blood!

A big thank you to our lovely friends who looked after our children repeatedly this day and over the last few weeks!

Chapter 20 – the trial ends?

Today, Thursday 17th March, I had been due to travel down to London for my second Ramucirumab infusion. But the Marsden said that under the experimental protocol, my thrombosis means I can't have Ramucirumab any more. So perhaps my experimental treatment is over. We wait to hear.

I'm staying at home, unable to walk today, but hoping that within a couple of days I'll be on my feet again. Our plan is to go to Wales for a holiday where we hope to enjoy views like this:

Thursday, March 3, 2016

Dasher version 5.0 released!

Dasher enables efficient communication in almost any language - here is Dasher working in Korean
I'm thrilled that a new development team for Dasher is now being led by Ada Majorek, who works for Google in California. Ada has just released Dasher version 5.0, and it is available from

Version 5.0 has many improvements to practical usability, improving the way that Dasher can interface to real world tasks, such as switching between writing on the computer and having a quick conversation.

I'll update the original Dasher website shortly so that it has pointers to the new release too.

Thank you, Ada, and team!!

Wednesday, March 2, 2016

After five visits to London hospitals...

Chapter 17 - mulling the lottery of clinical trials
On my first visit to the Marsden hospital near South Kensington, I met a couple of young doctors who explained the trials for which I might be eligible. They didn't exactly line up with what I said in my last blog, and the set on offer actually changed during the day, because doctor 2 added another option to the mix, which doctor 1 hadn't known about; and that extra option is the one I have actually signed up for. After seeing doctors 1 and 2, I met big chief doctor 3, and asked him what he would do in my shoes, and he said he would join the trial that I am now joining. I'll talk about the other option later because it involved some interesting ethical questions, but let's tell you about this recommended trial. It is a trial of two monoclonal antibodies, given together, on days 1 and 8 of a 21-day cycle. The two antibodies are Ramucirumab, which may inhibit blood vessel formation, and thereby sometimes (perhaps in 1 in 5 cases) slows tumour growth; and Pembrolizumab, which may switch on the body's immune response to the cancer (but perhaps only in 1 in 20 or 1 in 10 cases). The data for these two drugs for stomach cancer is quite limited, so all claims of efficacy seem quite uncertain, but the sales pitch from the research doctors was that Ramucirumab is "just as good as the standard second-line treatment" (namely the cytotoxin Paclitaxel, which has a helpful effect in about 1 in 5 cases, which in my view is not great); and that Pembrolizumab offers the chance of remission, albeit an unknown chance, and probably quite small. ("Pem", by the way, is an Anti-PD1, which is a type of monoclonal antibody I had been told by other friends was promising, and I should look out for.)

I am wary of the natural cognitive bias of researchers towards optimism about their research targets. So my gut feeling for asking to join this study was not strong. What made the opportunity more awkward was the "buy immediately while stocks last" pressure: the "Ram+Pem" trial was available internationally, right now, and open to only 6 patients. So if there was any delay, I might not get in!

Tilting me towards joining the trial was the fact that the other trial on offer at the Marsden was a trial that would offer me only "Pem" (not "Ram"), and even then, it would offer only a 50% chance of getting "Pem", thanks to randomisation. In the other branch, the treatment would be the standard second-line cytotoxin, Paclitaxel. So if I didn't get on with joining the Ram+Pem trial, I would definitely be stuck with my only option being a trial that was rated by the experts at least to be inferior to Ram+Pem.

Tilting me in the other direction, against the trial, was the certainty that joining the trial will guzzle up time and energy and will massively constrain my diary, making travel and holidays near-impossible, all in what may prove to be my final six months of life. The trial would involve coming to the hospital roughly twice every week, once for tests, and once for treatment. (Was there any way that some of the tests could simply be done in Cambridge? No, they said.)

I think it is quite comparable to a choice between buying 10,000 lottery tickets per week (so as to get a 1 in 140 chance of winning a jackpot, after a couple of years); or not buying those tickets.

When I discussed this choice with Ramesh, our feeling was that if I was obliged, most weeks, to travel to London on two separate days per week (which is what the doctors indicated would be required) then that would be too much cost. But if the cost were one day-trip to London per week for the rest of my life, then maybe that would be a price worth paying. We made clear to the doctors and the research nurse that we would really really like to not have to travel to London twice in a week.

And we figured, "if we don't like it, we can always withdraw from the trial".

So we decided to sign me up.

And guess what? Ethical rules forbid you from signing up on the same day. So I had to travel home on the train to Cambridge. Then get back on the damn train to London first thing the next morning. And meet the helpful doctor number 1 again. And sign the consent form. Then take the train back to Cambridge. Helpful doctor number 1 did say one nice thing: she said that they had reviewed the timings and they thought that actually it would be possible for me to make just one visit to London per week for the trial. The next step would be for the research nurse to organise for me to be screened, which would involve more trips to London, for a lot of tests. I begged for these screening tests to be combined to minimise my number of trips.

Here endeth the second visit to a London hospital

I was rather disappointed that, even though I'm sure my request for combined tests had been heard and understood, what happened next was a string of single appointments. The first call was about my CT scan. [Because the Marsden's trial required a CT scan even fresher than the very recent one made in Cambridge.] I accepted the appointment, but phoned the research nurse to say, erm, is this CT scan visit going to be combined with anything else? Then I received a letter telling me to come to London for an echocardiogram on another date. I phoned the research nurse again, and she shuffled both appointments and got them to be on a single day, albeit at two hospitals in London separated by more than 1 hour's travel.

Visit number three
As I said, the hospital in Cambridge isn't eligible to carry out tests for the Marsden; but St Anthony's hospital - a private hospital in the outer spiral arm of the galaxy, is. So on Friday 26th February I took the train to London, then a Thameslink train to Sutton, then a bus with a confusing 'next stop' display, which caused me to de-bus one mile early, after which I walked the last mile. The private hospital was very plush. I got echo-cardiogrammed, and the scientist confirmed that I had a heart and that she had no objection to me joining the trial.

Visit number four
A long public-transport journey later, I was at the Marsden for the CT scan. That went smoothly, indeed I was in and out early. And so, back home, to wait for more joined up tests.

The next phonecall I received was from the clinical assessment unit who wanted to schedule my biopsy. The appointment was bang in the middle of my teaching in Cambridge. I asked if the biopsy people could talk to the research people about tweaking the date; the answer was no, this was the only slot that fitted with the required research schedule. So I cancelled and rearranged my teaching, and got on the train to London. An overnight stay was required because they wanted me to show up at 8.30am. As I was getting ready to leave on Tuesday evening, Torrin clung to my leg. I think he was playing, rather than really wanting me "not to go", but the thought of a crying Torrin clinging to my leg and not letting me go stuck with me for the next 24 hours.

Visit number five
Before going to London, I made sure that the Cambridge research gang were aware that I was having a biopsy and that they were given the chance to request some tissue to go to them too. (You might recall that my voluntary gastroscopy-biopsy for Cambridge had failed to yield any satisfactory tissue.) I turned up at the Marsden on time. I was processed steadily by lovely staff (Alex and Greg in particular): cannula in; blood samples taken; answer a checklist; move into a cubicle; change into gown; get wheeled upstairs (by a skilled porter, navigating absurdly narrow corridors); answer a checklist; stare at the wall for 20 minutes; meet the Consultant; sign the consent form; get wheeled into a cold room full of toys; wait there just long enough for my left arm (which has been aching a lot recently) to really start aching. Then the consultant carefully looked with ultrasound in my neck at the target lymph node - I didn't tell you, did I, that the biopsy this time was to be from a lymph node that is enlarged and is therefore "hopefully" cancerous. Its size is still small though - only 9mm by 18mm. And the consultant told me that his bolt gun (I can't remember the correct term) has a throw of 20-25mm! So he was very likely to be chomping adjacent tissue as well as lymph node. Then in came the research nurse to collect the samples, and she told him what size was required, and he shot me slowly four times in the neck - the second impact really gave me a jolt [he said it must have hit a nerve]. Then another long wait in the cold room, then the reverse trolley ride, then a two hour wait accompanied by radio 4 and regular heart check-ups, then I was free to go. Except just before going I thought it was a good idea to phone the research nurse and ask what their plans were and was there anything else I could do for them today?

The research nurse seemed surprised that I hadn't heard: I am due to have visits six and seven on Tuesday and Thursday of next week!

The story goes on. This is way more travelling to London than I hoped, and I am disappointed about the poor communication, but I won't complain at this point. If all goes to plan this next-Thursday visit number 7 will be the start of my experimental Ram+Pem treatment.

Once that is under our belt, I will try to enforce the "only one visit per week" rule.

In other news
As I said, my left arm has been aching a lot (typically for 20 minutes at a time). Also I have been having a perpetual feeling of numbness in my left fingers, especially the tips, and much of the time a similar feeling in my left toes. After talking to my oncologist, I think these are all just long-lasting neuropathies caused by the first cycle of EOX chemotherapy back in August.
At the same time, I have been having awful back trouble. After I helped Torrin learn to ride his bike without stabilisers, I picked up a screaming Eriska, and developed a back spasm that has lasted three weeks now, cunningly moving around the back whenever my masseuse or my physio managed to cure the spasm where it was.
And the last three weeks have been dominated not only by the bad back but also by a non-stop coughy cold.

I'm sorry this feels not a very entertaining chapter.
Let me wrap up with some movie reviews and with the clinical trial anecdote I promised earlier.
The other trial I was offered at the Marsden was a randomised open-label comparison of "Pem" with the standard second line treatment, Paclitaxel, which I could already receive in Cambridge if I wanted it; but if I were in the trial I would be obliged to travel to London every week to have the whatever it was - Pem or Paclitaxel - even if it was in fact Paclitaxel. This felt a silly thing to do - if I got randomised onto the Paclitaxel branch, what would be the point, from my selfish point of view, in travelling to London every week for a treatment I could have got with my lovely Cambridge people? I left this thought unspoken, but one of the staff in London actually voiced exactly this thought for me and said that I would be entitled to leave the study at any point and it would be quite understandable if I were to quit after the randomisation if I were randomised onto the Paclitaxel branch.
I thought it was nice of the staff-member to say this. But would it be ethical to behave in that way? [Statisticians, wanting the trial to be valid, would be horrified at the idea of a patient choosing to leave the trial after the randomisation.] Fortunately I have not had to make this decision, as it looks like I am fully enrolled in a no-randomisation trial.

Movie time!
We have been enjoying some more movies, although we have, among the good ones, chosen a couple of films so awful that we actually stopped watching them, which is not something we often do.
Here are the good ones:
Heist (Gene Hackman) is a film I have seen before but I had forgotten almost all of it. It was a good film. Perhaps an implausible final relationship twist at the end, but lots of nice content along the way. I love heist films. ☆☆☆
The Martian - very well made, and a nice film about science. The one bit I couldn't believe was (in the final act) that Matt Damon would be able to steer his specially-pierced jet-suit without setting himself spinning; and then I couldn't imagine how he could have used his jet to cancel the spin, without producing another unwanted spin. ☆☆☆☆
A nice realistic film was Enough Said, which in spite of being set in Los Angeles was quite watchable. Most of the main characters are female, and the director was female too. ☆☆☆

Monday, February 15, 2016

The uncertainty continues

Chapter 16 – more CT scans, more data

Life is full of uncertainties. For example: Is this the worst cycle-lane pinch-point in Cambridge?

Does anyone in the University of Cambridge administration actually care about this awful junction design? Will our campaign for a safer Huntingdon Road succeed in getting an improved route for cyclists? When will my tumours cause actual trouble?
Data trickle in. We have heard that the University has now (about 3 and a half months after we suggested it) started talking to the land owners about the possibility of buying a thin strip of land to enable the pavement to be widened into a shared-use pavement and off-road cycle path, as indicated in the diagram below.
will I live to see this road made safer?
And I had a CT scan 8 days ago and saw the big chief oncologist today, and he said that the CT scan shows that three lymph nodes in my chest have got significantly bigger (they are all about 10mm wide). He reckons that this probably means the lymph nodes are cancerous, which may not matter too much, because they have room to grow into; but he reckons that there are probably similar secondary tumours elsewhere, and the fact that the lymph nodes have grown in size so soon after I stopped chemotherapy is bad news. Somewhere else, something is probably progressing. When I asked for more information about what 'progress' leads to, he mentioned "six months"; I think this was a worst-case scenario life expectancy.
He thinks I should be offered new treatments. He mentioned two standard treatments using taxanes which are yew tree extracts. One is called docetaxel, and one is paclitaxel. Alternatively I could get experimental treatments. He's going to refer me to the Marsden hospital, where they have trials of (a) a STAT3 inhibitor, which is hoped to interfere with cancer stem cells, and (b) Pembrolizumab, a checkpoint inhibitor. They are all rather unpronounceable and difficult to spell.
I'm disappointed to be back into the chemotherapy system so quickly – I was hoping for a good six months' break or so. And maybe to avoid life being just non-stop chemo, maybe I'll reserve some time for holiday and fun.
Anyway, I'm looking forward to meeting doctors in London; it'll be nice to get more opinions about what should be done with me.

One unexpected finding is that the CT scans show that I have two inferior vena cavas, where most people have only 1.
Other news: Torrin has learned to ride a pedal bike. Eriska has learned how to put duplo pieces together. We've all had upset stomachs and colds, and I'm currently languishing uselessly at home with a frozen-up back, which, frustratingly, is so sensitive that I can't get on and off a bike.
We have continued our movie-watching spree, and have seen a few more goodies...
We really enjoyed The Big Short, although it is possible that the equally good documentary Inside Job gives more insight into the explanation of who was to blame (e.g. Goldman-Sachs) and who ended up making loads of money (Goldman-Sachs), thanks to their undeserved bail-out, and who still makes loads of money. ☆☆☆☆☆
We bought the Full Monty style Pride on DVD, about an alliance between gay rights campaigners in London and miners in Wales. This felt a bit predictable in places (especially when Imelda Staunton and her gaggle all overnighted in a gay couple's house, magazines, toys, cackle cackle, ha-ha), but the true-story aspects were striking and memorable. ☆☆☆
Back in the cinema, we thought Trumbo was a fantastic film. A lovely portrayal of blacklisted hollywood during the McCarthy era, doing a good job of portraying different responses to the horrible situation; I especially liked the big argument between Trumbo (the writer) and the big actor who didn't take a stand like Trumbo. And the Goodman Director character was brilliant. ☆☆☆☆☆
When we turn to Netflix, we often struggle to find anything that we want to watch. Perhaps it's just that Netflix has a really bad user interface. I don't know. Anyway, while scraping the bottom of the Netflix barrel, we stumbled on Cowboys and Aliens, which opens as a really well made Western film, then turns into a "what would happen if the flying saucers arrived during the gold rush?" film, with an implausible balance in the fight being achieved by ensuring that the aliens' weapons always fire just a bit behind the fleeing humans, not at them. ☆☆☆
Finally, we watched, again, the lovely Angel's Share. ☆☆☆☆☆

Wednesday, January 6, 2016

Bye-bye Chemotherapy, Hello TP53!

Chapter 15: starting a new life
There are quite a few developments to report — First, the happiest news: I saw my big chief oncologist on Monday 4 January and we agreed that I am stopping chemotherapy now, having had six cycles of chemotherapy, rather than the full eight cycles that was pencilled in five months ago. Happy happy happy!
Here's the clinical information that underlay this decision. In my latest CT scan, taken on 30th December 2015, the evidence of a secondary tumour in one of the vertebrae of my spine had gone away; my stomach wall looked thin (which is a good thing); and a couple of lymph nodes are potential causes for concern - one of them has plumped up a little since the last scan, and another has become visible that was not visible before. The plump lymph nodes are not necessarily cancerous - they could just be plump because they are busy doing their job. So this seems like a 1-1 draw. I asked my doctor to talk me through the decision to have chemotherapy, which we took five months ago, and to update the decision making to this week's situation. Five months ago I drew, on the basis of what the doctors told me, a quality of life graph like this: showing quality of life versus time without chemotherapy (red) and with (green). The deal, five months ago, was that chemo might reduce quality of life by 20% or so for 6 months, and in return there might be some extension of life, with perhaps a steeper downturn in quality of life at the end; the median extension of life was a remarkably small 2 months, but if you get to be in the lucky right hand half of the distribution [indicated vaguely by dotted lines] you might get a bigger life extension. The doctor recommended trading in the 20% over 6 months in return for the expected life extension. So, this week, I asked the doctor to help me update the graph to the present situation, having completed 6 cycles, and considering whether or not to have another two. He told me that there was considerable uncertainty, no strong evidence of a benefit from cycles 7 and 8, and that other hospitals would recommend only 6 cycles not 8. He said there is good evidence that the bulk of the benefit of chemo comes from the first 3 or 4 cycles. He said it was credible that the benefit of cycles 7 and 8 was no greater than the 6 weeks of life which I'd be devoting to chemo, if I went ahead, and he said that he would be sympathetic if I said 'let's stop', based on my judgement of the expected loss of quality of life. So I said "let's stop" (yippee!). Except first, to put the decision in context, I also asked the doctor to update for me my projected survival curve, which at my time of diagnosis looked something like this, with a central summary of "you might die roughly 12 to 18 months after diagnosis", accompanied by the tail-probability summary: "very unlikely to live more than 2 years after diagnosis". I asked whether the new data and observations over the last five months led him to update these projections. He said, essentially, "no, not yet"; I will have another CT scan in 6 weeks, and that might enable a change of view; and also the fact that I have responded well to the chemo means I am somewhat less likely to be in the left half of the distribution and more likely to be in the right. But my updated prognosis remains "likely to die 12 to 18 months after diagnosis", which means roughly 6 to 12 months from now (with a slim possibility of 18 months). With such small durations on the cards it definitely feels the right decision to stop chemo, to stop being a patient, and get back to feeling fit and having maximum fun as soon as possible. I'd like to thank the Addenbrookes staff for doing a super job of scheduling the CT scan and getting the results analysed in time for my clinic this week; and all the Oncology day unit team for being so lovely during my chemo visits.
The second somewhat shocking development – at least to those who know me – is the acquisition of a new car (also on 4 Jan 2015). This is the first car I have owned since 1991, when, living in LA (where it would of course be against The Constitution not to drive) I owned a tiny red convertible. We have bought a brand new Skoda Fabia. Our main motivation for having a car is so that my wife can learn to drive. Maybe we will go for some road-trips or car-assisted holidays too.
The third piece of news is medical again. As I mentioned in Chapter 10, I enrolled in a research study to attempt to measure my cancer using DNA markers in the blood, I gave research blood every month, and I volunteered to have an extra gastroscopy so that samples of my tumour could be taken away and sequenced. I cycled to the hospital today to hear how the research was going. Surprisingly there was simultaneous good news and bad news: My in-stomach tumour had reduced so much by the time of the gastroscopy that none of the biopsies that were removed from me contained enough tumour tissue to get the required DNA samples! Good news for me and my chemo, but not such good news for the research project. The research team had gone back to my other biopsies that were taken from my peritoneum and that had been fixed in paraffin (which is not good news for the DNA boffins), and pulled out DNA sequences for just 50 genes, including ones that were likely to be mutated in cancers. As I said in Chapter 10, a single gene, called TP53, is mutated in more than 50% of human cancers, and it turns out that TP53 (exon 5) is mutated in mine. All this trouble, just because of one nucleotide! The research team are now thinking of setting up a diagnostic process where I give them a monthly blood sample and they use DNA probes specific to my TP53 mutation to return a month by month measurement that may indicate what my tumours are up to. This seems like a very good deal to me.
The fourth piece of news is an update to our parade of wonderfully-successful film viewings. Courtesy of BBC iplayer we watched the delightful Come as you are, which gets five stars. We also watched the Royal Tenenbaums, which gets two stars.

In closing, here is a data update...
Blood measurements (Haemoglobin, and various white blood counts) before and during six cycles of chemotherapy.

Saturday, January 2, 2016

Cycle 6 - and maybe I have had enough of this

Chapter 14 - Pattern spotting
Today is Saturday 2nd January, and Cycle six ended on Wednesday just three days ago. Happily the hospital have given me a week off, which I am looking forward to, before probably restarting with cycle seven next Thursday.
Once you have completed six cycles of chemotherapy, you have enough data to spot some patterns. Of course these may be coincidences.
My main side-effects are, in no particular order:
  1. sore spots in my mouth, especially my lips; here I have spotted a pattern: even if I am super careful not to bite my lips, I get sore spots about day 13 of the cycle, and then
    • they get steadily worse and more painful if I'm on the original high dose of chemo; or
    • they get worse for a few days then heal after about 7 days if I'm on the new lower dose.
  2. tiredness; here the pattern is that every cycle I am more tired, and tired for longer. In cycle 6 I've had a substantial nap during the day on pretty much every day of the cycle, and even now that I'm a few days into my "week off", I still feel washed out.
  3. runny noses and colds; here the pattern is that I got them a lot in the first few high-dose cycles, and I don't seem to be getting them so much in the last two low-dose cycles - hurray! I do still get a runny nose when out in the cold, but it's not bad.
  4. Three Torrin-creations in Lego
    the skin of my fingertips falling apart - especially my right finger and thumb, which I use for many important tasks, including taking Lego apart for Torrin. For this side-effect, there is no pattern. The skin is shiny and cracking all the time.
I was given a third CT scan on Wednesday 30th December, to help my doctors decide what to do next. The default is that cycles 7 and 8 will roll along and ruin much of January. I'm hoping that the doctors will have a reason for stopping my chemotherapy now, however, because I have had enough of being tired; I shouldn't complain - I am sure it could be much worse; but I would like to feel well again and have some fun, and I am optimistic that stopping chemotherapy will let me do that.
We have managed to have some fun in the last two weeks, in spite of the chemo. Having got a good handle on my capabilities during cycle 5, we planned a perfectly timed holiday in North Wales in cycle 6, over Christmas, and had great fun on the beach and on a couple of hills, where we enjoyed generous quantities of sun, rain, wind, and sand.
We also enjoyed watching a remarkably good brace of movies.
I'll list here all the movies we've seen in the last month or two, giving star-ratings out of five to highlight the brilliant ones.
The first remarkably good film we saw was Mission Impossible - Rogue Nation, which I thought was possibly the best action movie I've ever seen. After watching it, I re-watched the original Tom Cruise Mission Impossible and found it slow and dull in comparison. ☆☆☆☆☆
Next we saw Bridge of Spies, which was quite a good film, and certainly gave some interesting ideas about how to be a negotiator. ☆☆☆
For our third trip to the big screen we saw Star Wars - the Force Awakens, which was a million times as good as George Lucas's last three Star Warses. I really liked the way they used Han Solo, and the new relationships that they threw us into, and the way that lots more epic personal history has washed by [between episodes six and seven] without being shown. My main complaint is that the film seemed really flickery: I felt I could often see the frame rate ☆☆☆☆☆
Back at home we had a disappointing evening watching The Imitation Game, which is a dud in so many ways - it is criminal how they have replaced Turing's life by fiction. The fiction is far more Hollywood, with ridiculous personal conflicts and drama, such as the notion that Turing was put in charge of the project, overruling his boss; and his boss marching in and dramatically switching off the Bombe while it was in the middle of a computation; and the idea that they were working on code-breaking for ages, including building Bombes, then had the brainwave that one might try to crack messages by guessing what the plaintext was. Awful.
Our next DVD about a Cambridge boffin was Theory of Everything , which was tenderly made and wonderfully acted. ☆☆☆☆
Our next two wonderful successes on DVD were both found by following amazon-recommendations from Ken Loach's lovely film about four young scots, The Angel's Share , [☆☆☆☆]
which led us to the absolutely delightful Sunshine on Leith , which is a musical based on the music of the Proclaimers. This film made me cry with happiness not because the three love stories in it were very interesting (they weren't) but because the film is so exuberantly founded on a deep (and perhaps nationalistic?) love of the music of the Proclaimers, which I share. The film is a love-song to the Proclaimers. After we watched this film, everywhere we drove in our borrowed car, we listened to five Proclaimers albums [ Sunshine on Leith , This is the Story , Hit the Highway , Restless Soul , and Life With You ] on continuous-playing shuffle. Glorious! ☆☆☆☆☆
The second amazon-recommendation (based on Angel's Share) was the best film of all, at least in terms of laughs per minute, and perhaps overall: What we did on our holiday - another Scottish film featuring Billy Connolly and three super child actors, and an awesomely funny script highly reminiscent of Parenthood [one of my favourite films of all time] and Little Miss Sunshine . ☆☆☆☆☆
Our sequence of DVD hits continued with the absolutely delightful The Grand Budapest Hotel , which reminded me of the best Harold Lloyd films with its whimsy and speed. ☆☆☆☆☆
Next, An Inspector Calls proved to be a surprisingly gripping watch. ☆☆☆
We tried to continue the joy of viewing The Grand Budapest Hotel by watching the same director's Rushmore but we found it really disappointing. It was somewhat quirky and memorable, but the central love-triangle premise was that the demure teacher-lady-widow, who was both perfect and characterless, was romantically attracted both to a deluded moron of a 15-year old and to a rich 50-year-old jerk. This made no sense, and it was impossible to resonate with any of the characters.
Things picked up with the next DVD: Belle , based on a true story of a mixed-race girl who became a lady in the house of the Lord Chief Justice at the time when the slave trade was going strong, and people of colour were, for upper class snobs, untouchable. Like the Turing film, this film about Belle is heavily fictionalised, but at least the film makers had the honesty to say "based on a true story" in the opening credits. ☆☆☆☆
Last, we watched A Little Chaos , about King Louis 14, his court, and some gardeners making the gardens at Versailles. Alan Rickman does a lovely King, and the scene praised by critics in which the bereaved King has an incognito chat in the garden was indeed nice, but I felt a bit disappointed that we didn't see more of the grandeur and behind the scenes difficulty of the creation of the gardens. The masterpiece garden of Kate Winslet was a disappointment after all the anticipation, given that this was what the whole film was about. And her brainwave, near the beginning of the film, that the fountains in that garden could be fed by perpetually recycled water was most irritating to a physicist, since there was no talk of any pump, only a nonsensical assertion that the "pressure" could be used to recycle the water back to the top. ☆☆
OK, I'll sign out now. Except for completeness, I suppose I should mention the happy news which came out at New Year, that I've just been awarded a knighthood. Many thanks to all my supporters and to my family!