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