tag:blogger.com,1999:blog-71927755522790946372024-03-17T20:02:58.766-07:00Everything is ConnectedDavid MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.comBlogger53125tag:blogger.com,1999:blog-7192775552279094637.post-19883592985147567742016-04-27T04:53:00.001-07:002016-04-27T04:56:17.868-07:00David's last interview<div dir="ltr" style="text-align: left;" trbidi="on">
<a href="https://vimeo.com/163698553/10d1bbe16e">David's last interview with Mark Lynas.</a>
</p>
Posted by Ramesh MacKay 27 April 2016
<br /></div>
David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com224tag:blogger.com,1999:blog-7192775552279094637.post-38294224281748483922016-04-12T00:19:00.001-07:002016-04-12T01:10:51.262-07:00Appendix Three- Correspondence, Visitors, and Gifts<div dir="ltr" style="text-align: left;" trbidi="on">
Thank you so much to lots of lovely friends who have offered to visit me in hospital!
<br><Br>
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.
<br><Br>
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.
<br><Br>
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 <a href=http://www.justgiving.com/owner-email/pleasesponsor/davidjcmackay
>JustGiving site</a>, dedicated to the Arthur Rank Hospice Charity.
<br><br>
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.justgiving.com/owner-email/pleasesponsor/davidjcmackay" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcOki-yHjXxRYcDpOXsjW06McfxXfYTwzacx_RDBAwFwBrhlofiwOz_zX_kyRfGpRpYeYwENF4j2aWLpPbR6D1l-1IXCcqybFWkqpLJlNoI2Y1Dq-GHI7fmFuJ9SYRqKJrBtWxbINEjoey/s320/arhc-logo.png" /></a></div>
<br><br>
Thank you for all the warm messages from everyone!
<br><Br>
I've now spent 7 days and 7 nights in Addenbrookes.
<br><br>
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.
<br /></div>David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com69tag:blogger.com,1999:blog-7192775552279094637.post-76428636754175085982016-04-10T22:46:00.000-07:002016-04-10T22:46:34.431-07:00Appendix Two - An Open Letter to the Directors of Addenbrookes<div dir="ltr" style="text-align: left;" trbidi="on">
<b>To Jane Ramsey and Roland Sinker and the Board of Directors of Addenbrookes</b><br><br>
Dear Sirs and Madams,
<br><br>
the hospital is a great one, the staff are wonderful, and I'm grateful for everything the NHS does for me here.
<br><Br>
But I do have just one impassioned question and plea...
<br><br>
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 <b>two</b> brightness options, and so the patient has some <b>control</b> 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 <b>control</b> such that the dose rate can be controlled to the needs and comfort of the patient.
<br><br>
Another aspect of comfort is the thermal environment
<br><br>
<b>SO PLEASE, WHY OH WHY OH WHY, DOES THE ROOM NOT HAVE ANY SEMBLANCE OF INTELLIGENT THERMAL ENVIRONMENTAL CONTROL? </b>
<br><br>
Let me describe the room.
<br><br>
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 m<sup>2</sup> 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.
<em>
[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.]</em>
<br><Br>
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.
<br><br>
If the windows are closed the room's temperature becomes unbearable.
<br><br>
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.
<br><br>
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.)<br><br>
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.
<br><Br>
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.
<br><Br>
<b>A PLEA</b><br><br>
How about spending some money to fix this issue?
<br>
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.
<br><Br>
The situation is just ridiculous. Thermal comfort is crucial to recovery, to sleep, to well-being.
<br><br>
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.
<br><Br>
It just happens to tbe wrong technology and a waste.
<br><br>
So how about spending a similar amount of money, per bed, on making sensible, patient-centred controls for
maintaining a pleasant ambient temperature?
<br><br>
<b>Please!</b>
<br><br>
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.
<br><br>
Please could you do it soon, because my back is simultaneously melting while my ankles are turning to ice in the morning breeze?
<br><br>
Thanks!
<br>
Prof Sir David J C MacKay
<br /></div>David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com17tag:blogger.com,1999:blog-7192775552279094637.post-72134056774749445922016-04-10T22:02:00.000-07:002016-04-10T22:07:18.630-07:00Appendix One - Horlicks<div dir="ltr" style="text-align: left;" trbidi="on">
So it turns out that <a href=http://itila.blogspot.co.uk/2016/04/perhaps-my-last-post-well-see.html>"Perhaps my last post"</a> wasn't.
<br>
But I liked the idea of having an ending, so the posts that follow will be "Appendices" to my completed cancer story. OK?
<br><br>
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.
<br><br>
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.
<br><br>
(We are four inmates in this bay of ward D9. <b>Mr Snooze</b> is very genial and spends much of his time successfully asleep.
I'll tell you a bit about <b>Mr Crutch</b> and <b>Mr Fisher</b> in another Appendix.)
<br><br>
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.
<br>
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.
<br>
<br>
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.
<br><br>
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!
<br><br>
I woke up roasting as if I was in a desert hot-box.
<br><br>
Managed to doze a little more.
<br><br>
Then came the time - Rang my magix nurse bell... <b>"Annabella,"</b> I said, "please could I have a milky Horlicks to help me sleep?"
<br><br>
<b>"Hor-licks?"</b>
<br><br>
<b>Ah, she's from Barcelona.</b> <em>[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.]
</em>
<br><Br>
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.
<br><br>
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.
<br><br>
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.
<br><br>
It is a pretty pink sunrise.
<br>
And oh, look, it is 6am, so it is time for Katie to come and take another set of observations.
<br>
Beep-beep=beep, beep-beep. <br>
Beep-beep=beep, beep-beep.
<br /></div>David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com9tag:blogger.com,1999:blog-7192775552279094637.post-40206658833353607572016-04-10T07:54:00.000-07:002016-04-10T07:54:21.018-07:00Perhaps my last post - we'll see<div dir="ltr" style="text-align: left;" trbidi="on">
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.
<br>
I'd like my posts to have an ending, so I'm going to make this my final one - maybe.
<br>
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.
<br>
There's lots I could write, but the way I'd like to stop is by pointing you to the writings of
someone else.
<a href=http://www.theguardian.com/lifeandstyle/2016/mar/19/im-16-five-months-ago-i-was-diagnosed-with-terminal-cancer>Max Edwards</a>
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.
<br>
Thanks for reading!
<br>
<br>
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.inference.eng.cam.ac.uk/ultimate/pics/huckit.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://www.inference.eng.cam.ac.uk/ultimate/pics/huckit.jpg" /></a></div>
<br>
<br /></div>David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com52tag:blogger.com,1999:blog-7192775552279094637.post-12880516927183147012016-04-09T05:23:00.002-07:002016-04-12T00:50:53.050-07:00A long stay in hospital<div dir="ltr" style="text-align: left;" trbidi="on">
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.
<br>
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.
<br>
For the first time my phlegmy cough started to have a little pinkness or blood in it.
<br>
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.
<br>
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).
<br>
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.
<br>
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.
<br>
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.
<br>
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiVRH05j-0k-wLiIh8zkJQYvRAbvm8aYhrTM75bub9wqLj7TjsSmxjZ-QdeRDCV8_lBMorNc6foC1LR4Ina02-oaSjGhjZXFQ0gq359IMImdUpcosalR7lU79_f6f1vwfrMS8s8gJ28ljv/s1600/GogRainbow.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" alt="the view from my bed when I sit up" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiVRH05j-0k-wLiIh8zkJQYvRAbvm8aYhrTM75bub9wqLj7TjsSmxjZ-QdeRDCV8_lBMorNc6foC1LR4Ina02-oaSjGhjZXFQ0gq359IMImdUpcosalR7lU79_f6f1vwfrMS8s8gJ28ljv/s320/GogRainbow.jpg" /></a></div>
<br>
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.
<br>
Once Friday 8th April arrived, it was time for both a CT scan and the bronchoscopy.
<br>
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.
<br>
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.
<br>
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.
<br>
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.
<br>
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.
<br>
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.
<br>
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.
<br>
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.
<br>
The next step is to wait for the lab results to come back from my encounter with the lung-washing lady.
<br>
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.
<br>
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.
<br>
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.
<br /></div>David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com5tag:blogger.com,1999:blog-7192775552279094637.post-73182018492023508262016-04-02T05:22:00.002-07:002016-04-02T05:22:34.247-07:00Index for the first 23 Cancer Chapters<div dir="ltr" style="text-align: left;" trbidi="on">
<table><tr><td valign=top>Blog post</td><td>Contents</td></tr><tr><td valign=top>
<a href=http://itila.blogspot.co.uk/2015/08/unexpected-signs-of-malignancy.html>Unexpected signs of malignancy</a>
</td><td valign=top>
Chapter 1 <br>
Chapter 2<br>
Chapter 3 <br>
Chapter 4 <br>
Chapter 5 - the biggest red syringe I've ever seen <br>
Chapter 4b - the last minute hesitation <br>
Chapter 6 - Chemotherapy<br>
Chapter 7 - What's next</td></tr>
<tr><Td valign=top>
<a href=http://itila.blogspot.co.uk/2015/09/what-do-you-tell-children.html>
What do you tell the children?
</a></td><Td valign=top>
Chapter 8 - What do we tell the children?
<br>
Chapter 9 - cycle two, day eleven
</td></tr><tr><Td valign=top>
<a href=http://itila.blogspot.co.uk/2015/09/neutropaenia-and-other-side-effects.html>Neutropaenia and other side-effects
</a></td><Td valign=top>
Chapter 9b - the medicine cupboard is not big enough
</td></tr><tr><Td valign=top>
<a href=http://itila.blogspot.co.uk/2015/10/the-third-cycle-of-chemotherapy.html
>The third cycle of chemotherapy
</a></td><Td valign=top>
Chapter 10 – Mid-way through Cycle 3
</td></tr><tr><Td valign=top>
<a href=http://itila.blogspot.co.uk/2015/11/the-fourth-cycle-of-chemotherapy.html
>The fourth cycle of chemotherapy
</a></td><Td valign=top>
Chapter 11 – Mid-way through cycle 4
</td></tr><tr><Td valign=top>
<a href=http://itila.blogspot.co.uk/2015/11/time-off-for-bad-behaviour.html>Time off for bad behaviour
</a></td><Td valign=top>
Chapter 12 - a welcome break between cycles 4 and 5
</td></tr><tr><Td valign=top>
<a href=http://itila.blogspot.co.uk/2015/12/cycle-5-getting-hang-of-chemotherapy.html
>Cycle 5 - getting the hang of chemotherapy
</a></td><Td valign=top>
Chapter 13 - Starting to get the hang of chemotherapy [Friday 4 December]
</td></tr><tr><Td valign=top>
<a href=http://itila.blogspot.co.uk/2016/01/cycle-6-and-maybe-i-have-had-enough-of.html
>Cycle 6 - and maybe I have had enough of this
</a></td><Td valign=top>
Chapter 14 - Pattern spotting
</td></tr><tr><Td valign=top>
<a href=http://itila.blogspot.co.uk/2016/01/bye-bye-chemotherapy-hello-tp53.html
>Bye-bye Chemotherapy, Hello TP53!
</a></td><Td valign=top>
Chapter 15: starting a new life
</td></tr><tr><Td valign=top>
<a href=http://itila.blogspot.co.uk/2016/02/the-uncertainty-continues.html
>The uncertainty continues
</a></td><Td valign=top>
CHAPTER 16 – MORE CT SCANS, MORE DATA
</td></tr><tr><Td valign=top>
<a href=http://itila.blogspot.co.uk/2016/03/after-five-visits-to-london-hospitals.html
>After five visits to London hospitals...
</a></td><Td valign=top>
Chapter 17 - mulling the lottery of clinical trials
</td></tr><tr><Td valign=top>
<a href=
http://itila.blogspot.co.uk/2016/03/a-trial-and-tribulation.html >
A trial and a tribulation</a></td><Td valign=top>
Ch 18 - visits 6 and 7 to London - a trial starts
<br>
Chapter 19 – other ailments
<br>
Chapter 20 – the trial ends?
</td></tr><tr><td valign=top><a href=http://itila.blogspot.co.uk/2016/03/chapter-21-another-visit-to-london-in.html>Further developments, March 2016
</a></td><td valign=top> Ch 21 - another visit to London
</td></tr><tr><Td valign=top><a href=http://itila.blogspot.co.uk/2016/03/snowdonia-here-we-come.html>Snowdonia here we come!
</a></td><td valign=top> Ch 22 - an impatient patient
</td></tr><tr><Td valign=top><a href=http://itila.blogspot.co.uk/2016/04/wonder-drug-pembrolizumab-nearly-killed.html>
Wonder-drug Pembrolizumab nearly killed me
</a></td><td valign=top> CHAPTER 23 - A DOWNHILL ADVENTURE
</td></tr></table>
<br /></div>
David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com4tag:blogger.com,1999:blog-7192775552279094637.post-10184219648869713082016-04-01T13:54:00.001-07:002016-04-01T13:54:55.304-07:00Wonder-drug Pembrolizumab nearly killed me<div dir="ltr" style="text-align: left;" trbidi="on">
<h2>Chapter 23 - a downhill adventure</h2>
<br>
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..." <br><br>
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.
<br><Br>
"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.
<br><Br>
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.
<br>
<br>
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.
<br><br>
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",
<center>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2IPgnPIcDyzHIYzwy4KGFxDZrRdVe-KGNR_KVtwWWuNISqtPb-O_MI2yp4WDwzw90uKbhWitpKcq8iCXfrvemFa0FrhxFBYCJ3yDzQnYQm8souWbY6cJi3O7BOOvzhbcdMuxtvUUnMXv4/s1600/Screen+Shot+2016-04-01+at+20.50.37.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2IPgnPIcDyzHIYzwy4KGFxDZrRdVe-KGNR_KVtwWWuNISqtPb-O_MI2yp4WDwzw90uKbhWitpKcq8iCXfrvemFa0FrhxFBYCJ3yDzQnYQm8souWbY6cJi3O7BOOvzhbcdMuxtvUUnMXv4/s320/Screen+Shot+2016-04-01+at+20.50.37.png" /></a>
</center>
and the
<a href=https://www.keytruda.com/melanoma/keytruda-side-effects/>official website for the drug</a>
shows four
"<b>Serious Side Effects</b>" of which the <em>first</em> listed is "<b>Lung problems (pneumonitis)</b>" with
subheadings "Shortness of breath; Chest pain; New or worse cough".
<br><br>
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 "<b>Serious Side Effects</b>" webpage, the treatment advice is:
<b>Getting medical treatment right away may help keep these problems from becoming more serious.</b> ... 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.
<br><br>
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.
<br><br>
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? <b>No no</b>, he said, you very probably have NOT got
alveolitis. <b>What?</b> 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.
<br><Br>
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.
<br><Br>
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.
<br><br>
By this point my sister Janet had arrived and I discussed with her what I understood to be going on with the breathlessness.
<br><br>
There were four possibilities I was aware of:
<ol>
<li>
I might have a chest infection; and this was already being treated by antibiotics.
</li><li>
I might have a pulmonary embolism; but this was unlikely, and anyway was already being treated by the daily Fragmin injections.
</li><li>
I might have alveolitis or pneumonitis, caused by the experimental treatment - <b>and this would be treated with steroids</b>.
</li><li>
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.
</li>
</ol>
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.)
<br><Br>
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.
<br><br>
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.
<br><br>
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 <em>not</em> being diagnosed coherently, and <em>not</em>
being treated.
<br><BR>
But the staff were lovely and the hot food was absolutely excellent! Got to keep things balanced.
<br><br>
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.
<br><br>
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.
<br><br>
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.
<br><Br>
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.
<br><br>
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.
<br><Br>
And (after a couple of hours' wait)
the CT scan showed (as expected) no blood clots in the lungs; and it <em>did</em> 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.
<br><Br>
I collected my prescription of millions of steroid pills for the next few weeks, and went home.
<br><br>
The steroids make me wild and obnoxious but I am very happy to have a bit of a reduction in breathlessness.
<br><br>
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.
<br><Br>
Here you are.
<br /></div>David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com11tag:blogger.com,1999:blog-7192775552279094637.post-46847981921358959092016-03-20T14:17:00.002-07:002016-03-20T14:17:23.660-07:00Snowdonia here we come!<div dir="ltr" style="text-align: left;" trbidi="on">
<b>Chapter 22 - an impatient patient</b>
<br>
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.
<br><br>
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.
<br /></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHHY8t2e9-Mg6IpUj2lDYxOHqzIc1dGUenNwjlvS0XqtoS3ph7z8EE6TDTdwMwPmeKhjmvlP7G7Y5AdNwaa2IwGU4OyMLTU0OPdE12MPaZo-LexyOxciCdTRselvOjw_0VaKxUNwmWSgQ3/s1600/20160119_111740.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHHY8t2e9-Mg6IpUj2lDYxOHqzIc1dGUenNwjlvS0XqtoS3ph7z8EE6TDTdwMwPmeKhjmvlP7G7Y5AdNwaa2IwGU4OyMLTU0OPdE12MPaZo-LexyOxciCdTRselvOjw_0VaKxUNwmWSgQ3/s320/20160119_111740.jpg" /></a>David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com5tag:blogger.com,1999:blog-7192775552279094637.post-33173489784830479322016-03-19T05:46:00.000-07:002016-03-20T14:07:37.269-07:00Further developments, March 2016 <div dir="ltr" style="text-align: left;" trbidi="on">
<b>Chapter 21 - another visit to London</b>
<br><br>
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 <em>would</em> like me to come to
London after all, with a view to giving me the Ramucirumab treatment one day late, on Friday 18 March.
<br><br>
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.
<br><br>
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.
<br><br>
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.
<br><br>
The thrombosis is still hurting quite a lot if I try to walk.
Hopefully we will be able to go on holiday soon anyway.
<br>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr4Gj6QF8kaZH3KKHQwXfEuR9VPnqM320yzuc6I7YVSnlP6Flmh5ybS1QjcmAD7strx9WgFX2IJB7bfcML63U_mZfUiGQa3DuiOSM4HfzJcN081rlmjWwdyx__fnKT_g6BObyz4wk_HWZb/s1600/20160121_081732.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr4Gj6QF8kaZH3KKHQwXfEuR9VPnqM320yzuc6I7YVSnlP6Flmh5ybS1QjcmAD7strx9WgFX2IJB7bfcML63U_mZfUiGQa3DuiOSM4HfzJcN081rlmjWwdyx__fnKT_g6BObyz4wk_HWZb/s320/20160121_081732.jpg" /></a>
<br /></div>David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com0tag:blogger.com,1999:blog-7192775552279094637.post-21118718629823887582016-03-17T05:48:00.002-07:002016-03-17T06:17:13.665-07:00A trial and a tribulation<div dir="ltr" style="text-align: left;" trbidi="on">
<b>Chapter 18 – visits 6 and 7 to London – a trial starts...</b><br>
<br>
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 <A href=https://en.wikipedia.org/wiki/Amitriptyline>Amitriptyline</a>, 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.
<br><Br>
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.
<br><br>
On Wednesday 9th March I gave my final lecture on Information Theory in Cambridge.
<br><Br>
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.
<br>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvnQTzIg_M1u1TRmT3evw284FIcKCNQr2wp-hG1nwaA3wklWHa2IZ3Kg5iqbH9WRC_RrbbL7oH6nVrfkWAHQWWro6iu2-R3Sr7OpIsqCmwtyjO0xs96r5s6b5y8Is4BNfr7ur_NCi1dTpb/s1600/mumblemab.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvnQTzIg_M1u1TRmT3evw284FIcKCNQr2wp-hG1nwaA3wklWHa2IZ3Kg5iqbH9WRC_RrbbL7oH6nVrfkWAHQWWro6iu2-R3Sr7OpIsqCmwtyjO0xs96r5s6b5y8Is4BNfr7ur_NCi1dTpb/s400/mumblemab.jpg" /></a>
<br>
This photo shows the tiny bag of Pembrolizumab – I think this much drug costs about 10,000 pounds.
<br>
<br>
The only noticeable side-effect of the treatment was that my blood pressure went up a bit.
<br><br>
After being observed for an hour, we were free to return to Cambridge.
<br><br>
<b>Chapter 19 – other ailments</b><br>
<br>
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.
<br><Br>
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 jamiegundry.com).<br>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5Y5xUVf-fivE5tcJvT7n5L1gZOsiRy4ltTwTye4z5-iUMpC3yOx_ck_k3PnNhymSHonkGLF2i-ybg75GP_fzhgveJCohP5lnsf6Eyc8LyhyphenhyphenFcijek5bF0TqivRFlDUxfzN1g3qW253sx8/s1600/DJCMS_2016_jamiegundry.jpg" imageanchor="1" ><img border="0" alt="Photo by jamiegundry.com" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5Y5xUVf-fivE5tcJvT7n5L1gZOsiRy4ltTwTye4z5-iUMpC3yOx_ck_k3PnNhymSHonkGLF2i-ybg75GP_fzhgveJCohP5lnsf6Eyc8LyhyphenhyphenFcijek5bF0TqivRFlDUxfzN1g3qW253sx8/s400/DJCMS_2016_jamiegundry.jpg" /></a>
<br>
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.
<br>
<br>
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 <em>I did have a small DVT</em>.
<br><br>
So, all of a sudden, I'm a different sort of patient, and new medicine is required.
<br><br>
The lovely nurse took my blood samples, I had a talk to the consultant, and then we waited for the results to come back.
<br><br>
The recommended treatment for deep vein thrombosis for a cancer patient is
<a href=https://en.wikipedia.org/wiki/Dalteparin_sodium>Dalteparin</a> (aka Fragmin, a heparin), which is injected
daily.
<br><br>
The nurse showed us how to do the injection. It really hurt! <br><br>
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!
<br><Br>
A big thank you to our lovely friends who looked after our children repeatedly this day and over the last few weeks!
<br><br>
<b>Chapter 20 – the trial ends? </b>
<br><BR>
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.
<br><br>
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:<br>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP-1GNQXtVAUeA2Qwk1V-Z8p_MbUtYWSJY2Bs6mCk3IPwmTZ5-NEoPzYwKiXcti2V3WIh78PwnzGSOfYHP8ziw9ellIasnTcn18ln-wr7St41vnIRcy_y48YKXVmkBRIKqXBMUb5EHimyM/s1600/20160119_093423.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP-1GNQXtVAUeA2Qwk1V-Z8p_MbUtYWSJY2Bs6mCk3IPwmTZ5-NEoPzYwKiXcti2V3WIh78PwnzGSOfYHP8ziw9ellIasnTcn18ln-wr7St41vnIRcy_y48YKXVmkBRIKqXBMUb5EHimyM/s400/20160119_093423.jpg" /></a>
<br /></div>David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com1tag:blogger.com,1999:blog-7192775552279094637.post-33099649659095562662016-03-03T12:53:00.000-08:002016-03-03T12:53:46.012-08:00Dasher version 5.0 released!
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.inference.phy.cam.ac.uk/dasher/images/koreanHello.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://www.inference.phy.cam.ac.uk/dasher/images/koreanHello.png" alt="Dasher enables efficient communication in almost any language - here is Dasher working in Korean"/></a></div>
<div dir="ltr" style="text-align: left;" trbidi="on">
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 <b>Dasher version 5.0</b>, and it is available from
<a href=https://github.com/ipomoena/dasher/releases>https://github.com/ipomoena/dasher/releases</a>.
<br><br>
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.
<br><Br>
I'll update the <a href=http://www.inference.eng.cam.ac.uk/dasher/>original Dasher website</a> shortly so that it has pointers to the
new release too.
<br><Br>
Thank you, Ada, and team!!
<br /></div>David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com2tag:blogger.com,1999:blog-7192775552279094637.post-86685099897297750912016-03-02T13:49:00.001-08:002016-03-02T13:54:11.583-08:00After five visits to London hospitals...<div dir="ltr" style="text-align: left;" trbidi="on">
<b>Chapter 17 - mulling the lottery of clinical trials</b><br>
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
<b>remission</b>, 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.)
<br>
<br>
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!
<br><br>
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.
<br><br>
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.)
<br><br>
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.
<br><br>
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.
<br><br>
And we figured, "if we don't like it, we can always withdraw from the trial".
<br><br>
So we decided to sign me up.
<br><br>
And <b>guess what?</b> 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 <em>combined</em>
to minimise my number of trips.
<br><br>
<em>Here endeth the second visit to a London hospital</em>
<br>
<br>
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.
<br><br>
<em>Visit number three</em> <br>
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.
<br><br>
<em>Visit number four</em><br>
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.
<br>
<br>
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.
<br><br>
<em>Visit number five</em><br>
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?
<br><br>
The research nurse seemed surprised that I hadn't heard: I am due to have visits <em>six</em> and <em>seven</em> on Tuesday and
Thursday of next week!
<br><br>
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.
<br><br>
Once that is under our belt, I will try to enforce the "only one visit per week" rule.
<br>
<br>
<b>In other news</b><br>
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.
<br>
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.
<br>
And the last three weeks have been dominated not only by the bad back but also by a non-stop coughy cold.
<br>
<br>
I'm sorry this feels not a very entertaining chapter.
<br>
Let me wrap up with some movie reviews and with the clinical trial anecdote I promised earlier.
<br>
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. <br>
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.
<br>
<br>
<b>Movie time!</b>
<br>
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.
<br>
Here are the good ones:
<br>
<table><tr><td valign=top>
<a href=http://www.amazon.co.uk/Heist-DVD-Delroy-Lindo/dp/B0000649K6/davidmackay0f-21>Heist (Gene Hackman)</a>
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.
</td><td valign=top>
<span style="color:#cccc00">☆☆☆</span>
</td></tr><tr><Td>
<a href=http://www.amazon.co.uk/Martian-DVD-Matt-Damon/dp/B015Q04ET6/davidmackay0f-21>The Martian</a>
-
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 <em>setting himself spinning</em>; and then I couldn't imagine
how he could have used his jet to cancel the spin, without producing another unwanted spin.
</td><td valign=top>
<span style="color:#cccc00">☆☆☆☆</span>
</td></tr><tr><Td>A nice realistic film was
<a href=http://www.amazon.co.uk/Enough-Said-DVD-James-Gandolfini/dp/B00FYPHRYI/davidmackay0f-21>Enough Said</a>,
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.
</td><td valign=top>
<span style="color:#cccc00">☆☆☆</span>
</td></tr></table>
<br /></div>David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com3tag:blogger.com,1999:blog-7192775552279094637.post-60831956905110527812016-02-15T12:22:00.002-08:002016-02-17T12:53:35.526-08:00The uncertainty continues<h2>Chapter 16 – more CT scans, more data</h2>
Life is full of uncertainties. For example:
Is this the worst cycle-lane pinch-point in Cambridge?
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjntnLNTIHl31FaM3BsQF2s-t6m8lWVfkSV1y_BT8L6oiIheox8OIbXRG_mhcFBkEVBcQqv8ZBrR9TvuIqPQOAtumIeSb3Iaoojg_esrgkk7rDbK6VD-BILhzjcdA0vBIYTPge_L6atJ_06/s1600/WorstPinchPointHuntingdonRd.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjntnLNTIHl31FaM3BsQF2s-t6m8lWVfkSV1y_BT8L6oiIheox8OIbXRG_mhcFBkEVBcQqv8ZBrR9TvuIqPQOAtumIeSb3Iaoojg_esrgkk7rDbK6VD-BILhzjcdA0vBIYTPge_L6atJ_06/s320/WorstPinchPointHuntingdonRd.png" /></a></div><div dir="ltr" style="text-align: left;" trbidi="on">
<br /></div>
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?
<br>
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.
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAy9acDsxmsNzzxJb6AiuK6nXaMDMzhN5gePgsu5Qwl5oxXpct_TsxzdwHn6VluAni7EUakDeA0B0AJF6jIUoFbS8iWj9aifYD27ZBvxEspKhqS6Jzbl3MtpkZ9Lxi926H9J-6rHC3si7x/s1600/EAPathChange2.eps.detail2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" alt="will I live to see this road made safer?" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAy9acDsxmsNzzxJb6AiuK6nXaMDMzhN5gePgsu5Qwl5oxXpct_TsxzdwHn6VluAni7EUakDeA0B0AJF6jIUoFbS8iWj9aifYD27ZBvxEspKhqS6Jzbl3MtpkZ9Lxi926H9J-6rHC3si7x/s400/EAPathChange2.eps.detail2.png" /></a></div>
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. <em>Somewhere else, something is probably progressing.</em>
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.
<br>
He thinks I should be offered new treatments. He mentioned two standard treatments using <b>taxanes</b> which are yew tree extracts.
One is called <b>docetaxel</b>, and one is <b>paclitaxel</b>. 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) <b>Pembrolizumab</b>, a checkpoint inhibitor.
They are all rather unpronounceable and difficult to spell.
<br>
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.
<br>
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.
<br><br>
One unexpected finding is that the CT scans show that I have two <em>inferior vena cava</em>s, where most people have only 1.
<br>
<b>Other news:</b>
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.
<br>
<b>Movies!</b>
<br>
We have continued our movie-watching spree, and have seen a few more goodies...
<table><tr><td valign=top>
We really enjoyed
<a href=http://www.amazon.co.uk/Big-Short-DVD-Brad-Pitt/dp/B01AD980BS/davidmackay0f-21>The Big Short</a>,
although it is possible that the equally good documentary
<a href=http://www.amazon.co.uk/Inside-Job-DVD-Matt-Damon/dp/B003LPUMHM/davidmackay0f-21>Inside Job</a>
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.
</td><td valign=top>
<span style="color:#ffff00">☆☆☆☆☆</span>
</td></tr><tr><td valign=top>
We bought the Full Monty style
<a href=http://www.amazon.co.uk/Pride-DVD-Bill-Nighy/dp/B00NFID17I/davidmackay0f-21>Pride</a> 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.
</td><td valign=top>
<span style="color:#ffff00">☆☆☆</span>
</td></tr></td></tr><tr><td valign=top>
Back in the cinema, we thought
<a href=http://www.amazon.co.uk/Trumbo-DVD-Peter-Askin/dp/B004RACM9Q/davidmackay0f-21>Trumbo</a> 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.
</td><td valign=top>
<span style="color:#ffff00">☆☆☆☆☆</span>
</td></tr></td></tr><tr><td valign=top>
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
<a href=http://www.amazon.co.uk/Cowboys-Aliens-DVD-Daniel-Craig/dp/B004BDOF1C/davidmackay0f-21>Cowboys and Aliens</a>, which opens
as a <em>really</em> 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.
</td><td valign=top>
<span style="color:#ffff00">☆☆☆</span>
</td></tr></td></tr><tr><td valign=top>
Finally, we watched, again,
the lovely
<a href=http://www.amazon.co.uk/Angels-Share-Theatrical-Version-DVD/dp/B008TQA2NW/davidmackay0f-21>Angel's Share</a>.
</td><td valign=top>
<span style="color:#ffff00">☆☆☆☆☆</span>
</td></tr>
</table>
David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com4tag:blogger.com,1999:blog-7192775552279094637.post-70099454664898394612016-01-06T08:40:00.001-08:002016-01-20T07:52:43.529-08:00Bye-bye Chemotherapy, Hello TP53!<div dir="ltr" style="text-align: left;" trbidi="on">
<b>Chapter 15: starting a new life</b>
<br>
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
<em>I am stopping chemotherapy now</em>, having had six cycles of chemotherapy, rather than the full
eight cycles that was pencilled in five months ago.
Happy happy happy!
<br>
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:
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHKlkdCLqI0EtjFnVdJs3it7__LuFRA1lxvMGGFJ8aapu5n2hOKWAWTZnkls02FMW1PXUowNKk-SgVTjo55-EIL9k2amHQErqSGARS2VAbYLe96mfVGxyI-LeaZO0u6cVZSELQ4xzFR6q-/s1600/QualityS.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHKlkdCLqI0EtjFnVdJs3it7__LuFRA1lxvMGGFJ8aapu5n2hOKWAWTZnkls02FMW1PXUowNKk-SgVTjo55-EIL9k2amHQErqSGARS2VAbYLe96mfVGxyI-LeaZO0u6cVZSELQ4xzFR6q-/s200/QualityS.png" /></a>
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,
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidtreY3OdApEoNmuG5yIcM50gxnjOf3jl92xki2XDtuo3BW51AFXCuaeD-tF6JX1DyfAVyyKCz46nhCH58a9jY1XE4jRYhiUHf6yMFA6lFTfyhEK1L5ldWeqM6KSIrd0lp3BC9vXKsayfC/s1600/SurvivalCurveS.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidtreY3OdApEoNmuG5yIcM50gxnjOf3jl92xki2XDtuo3BW51AFXCuaeD-tF6JX1DyfAVyyKCz46nhCH58a9jY1XE4jRYhiUHf6yMFA6lFTfyhEK1L5ldWeqM6KSIrd0lp3BC9vXKsayfC/s200/SurvivalCurveS.png" /></a>
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.
<br>
The second somewhat shocking development – at least to those who know me – is the acquisition
of a new car (also on 4 Jan 2015).
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGqUog5vLK7k3RqE-4GOwQk24IQ2rMu-x85A45bf_epzXBBf1TEavkGfk1mbsr5_ThYpQ6UEb7W9syVbIebDHqudb8pH3T00s1V6XKwy_oQTMb62eE9Rf-4rY4ewvcqNJDrc158dyCKPtY/s1600/20160104_121213.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGqUog5vLK7k3RqE-4GOwQk24IQ2rMu-x85A45bf_epzXBBf1TEavkGfk1mbsr5_ThYpQ6UEb7W9syVbIebDHqudb8pH3T00s1V6XKwy_oQTMb62eE9Rf-4rY4ewvcqNJDrc158dyCKPtY/s200/20160104_121213.jpg" /></a>
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.
<br>
The third piece of news is medical again.
As I mentioned in
<a href=http://itila.blogspot.co.uk/2015/10/the-third-cycle-of-chemotherapy.html>Chapter 10</a>,
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 <a href=https://en.wikipedia.org/wiki/P53>TP53</a>, 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.
<br>
The fourth piece of news is an update to our parade of
wonderfully-successful film viewings. Courtesy of BBC iplayer we watched the delightful
<a href=http://www.amazon.co.uk/Come-You-Are-Hasta-Vista/dp/B00CZCSVPW/davidmackay0f-21>Come as you are</a>, which
gets five stars.
We also watched the Royal Tenenbaums, which gets two stars.
<br><br>
In closing, here is a data update...<br>
Blood measurements (Haemoglobin, and various white blood counts) before and during six cycles of chemotherapy. <br>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEsxiw5EL41WjPd1ro53Dfij9bceMbP1ZS3sAJ3uEdvOA7ipRC-_d9eeAz9bq7_fORs0WJQxa6uTW3szPfi_6fQrYJ4dYUOYvMSOf87YYdmxOWcwH91DVQOiCdI8h5z7w4Agv6J3eYKXgV/s1600/bloods.eps.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEsxiw5EL41WjPd1ro53Dfij9bceMbP1ZS3sAJ3uEdvOA7ipRC-_d9eeAz9bq7_fORs0WJQxa6uTW3szPfi_6fQrYJ4dYUOYvMSOf87YYdmxOWcwH91DVQOiCdI8h5z7w4Agv6J3eYKXgV/s320/bloods.eps.png" /></a>
<br /></div>David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com2tag:blogger.com,1999:blog-7192775552279094637.post-41147896912357739442016-01-02T10:57:00.000-08:002016-03-02T13:34:02.465-08:00Cycle 6 - and maybe I have had enough of this<div dir="ltr" style="text-align: left;" trbidi="on">
<b>Chapter 14 - Pattern spotting
</b><br>
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.
<br>
Once you have completed six cycles of chemotherapy, you have enough data
to spot some patterns. Of course these may be coincidences.
<br>
My main side-effects are, in no particular order:
<ol>
<li>
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
<ul><li> they get steadily worse
and more painful if I'm on the original high dose of chemo; or
</li><li>
they get worse for a few days then heal after about 7 days if I'm on the new lower dose.
</li></ul>
</li>
<li>
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.
</li>
<li>
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 - <b>hurray!</b> I do still get a
runny nose when out in the cold, but it's not bad.
</li><li>
<div class="separator" style="clear: both; text-align: center;"><table style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6BJCUAvLNrfTt5gpfOoLk2BnK_WxhnZgvDKY_5k2kV-sLXMBjMcvQb-zerYyl6YP4sD2Axsml-oJtol8tsB0Y5o7owbTqQhJe-s7WkRxIeRrKZishkxwdVX4nTaOp552Pv8ilFH8AMeG_/s1600/legoS.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6BJCUAvLNrfTt5gpfOoLk2BnK_WxhnZgvDKY_5k2kV-sLXMBjMcvQb-zerYyl6YP4sD2Axsml-oJtol8tsB0Y5o7owbTqQhJe-s7WkRxIeRrKZishkxwdVX4nTaOp552Pv8ilFH8AMeG_/s320/legoS.png" /></a></td></tr><tr><td><small><em>Three Torrin-creations in Lego</em> </small></td></tr></table></div>
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.
</li>
</ol>
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.
<br>
We <em>have</em> 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.
<br>
We also enjoyed watching a remarkably good brace of movies.
<br>
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.
<br>
<table><tr><td valign=top>
The first remarkably good film we saw was
<a href=http://www.amazon.co.uk/Mission-Impossible-Rogue-Nation-DVD/dp/B012G02WB6/davidmackay0f-21>Mission Impossible - Rogue Nation</a>, 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.
</td><td valign=top>
<span style="color:#ffff00">☆☆☆☆☆</span>
</td></tr><tr><Td>
Next we saw
<a href=http://www.amazon.co.uk/Bridge-Spies-DVD-Tom-Hanks/dp/B01879BXBK/davidmackay0f-21>Bridge of Spies</a>,
which was quite a good film, and certainly gave some interesting ideas about
how to be a negotiator.
</td><td valign=top>
<span style="color:#ffff00">☆☆☆</span>
</td></tr><tr><Td>
For our third trip to the big screen we saw
<a href=http://www.amazon.co.uk/Star-Wars-Force-Awakens-DVD/dp/B019FF9WHW/davidmackay0f-21>Star Wars - the Force Awakens</a>, 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
</td><td valign=top>
<span style="color:#ffff00">☆☆☆☆☆</span>
</td></tr><tr><Td>
Back at home we had a disappointing evening watching
<a href=http://www.amazon.co.uk/Imitation-Game-DVD-Benedict-Cumberbatch/dp/B00PC1FD9U/davidmackay0f-21>
The Imitation Game</a>, 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, <em>then</em> had the brainwave
that one might try to crack messages by guessing what the plaintext was. Awful.
</td><td valign=top>
<span style="color:#dddd00">☆</span>
</td></tr><tr><Td>
Our next DVD about a Cambridge boffin was
<a href=http://www.amazon.co.uk/Theory-Everything-DVD-Eddie-Redmayne/dp/B00LY1YOGA/davidmackay0f-21>
Theory of Everything
</a>, which was tenderly made and wonderfully acted.
</td><td valign=top>
<span style="color:#dddd00">☆☆☆☆</span>
</td></tr><tr><Td>
Our next two wonderful successes on DVD were both found by following amazon-recommendations from
Ken Loach's <em>lovely</em> film about four young scots,
<a href=http://www.amazon.co.uk/Angels-Share-Theatrical-Version-DVD/dp/B008TQA2NW/davidmackay0f-21>
The Angel's Share
</a>,
</td><td valign=bottom>
[<span style="color:#eeee00">☆☆☆☆</span>]
</td></tr><tr><Td>
which led us to the absolutely delightful
<a href=http://www.amazon.co.uk/Sunshine-Leith-DVD-Jason-Flemyng-y/dp/B00GD8MF74/davidmackay0f-21>
Sunshine on Leith
</a>,
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
[
<a href=http://www.amazon.co.uk/Sunshine-Leith-The-Proclaimers/dp/B000003JB1/davidmackay0f-21>
Sunshine on Leith
</a>,
<a href=http://www.amazon.co.uk/This-Is-The-Story-Proclaimers/dp/B000006N5M/davidmackay0f-21>
This is the Story
</a>,
<a href=http://www.amazon.co.uk/Hit-The-Highway-Proclaimers/dp/B0000081HQ/davidmackay0f-21>
Hit the Highway
</a>,
<a href=http://www.amazon.co.uk/Restless-Soul-The-Proclaimers/dp/B000A6M9PI/davidmackay0f-21>
Restless Soul
</a>,
and
<a href=http://www.amazon.co.uk/Life-With-You-The-Proclaimers/dp/B000S9UA3K/davidmackay0f-21>
Life With You
</a>
]
on continuous-playing shuffle. Glorious!
</td><td valign=top>
<span style="color:#dddd00">☆☆☆☆☆</span>
</td></tr><tr><Td>
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:
<a href=http://www.amazon.co.uk/What-Did-Our-Holiday-DVD/dp/B00NWLN6PU/davidmackay0f-21>
What we did on our holiday
</a> - another Scottish film featuring Billy Connolly and three super child actors,
and an awesomely funny script highly reminiscent of
<a href=http://www.amazon.co.uk/Parenthood-DVD-Steve-Martin/dp/B00004D2WI/davidmackay0f-21>
Parenthood
</a> [one of my favourite films of all time]
and
<a href=http://www.amazon.co.uk/Little-Miss-Sunshine-Abigail-Breslin/dp/B000JU9OJ4/davidmackay0f-21>
Little Miss Sunshine
</a>.
</td><td valign=top>
<span style="color:#dddd00">☆☆☆☆☆</span>
</td></tr><tr><Td>
Our sequence of DVD hits continued with the absolutely delightful
<a href=http://www.amazon.co.uk/Grand-Budapest-Hotel-DVD/dp/B00IONUN34/davidmackay0f-21>
The Grand Budapest Hotel
</a>, which reminded me of
the best
<a href=http://www.amazon.co.uk/Harold-Lloyd-Definitive-Collection-DVD/dp/B000N3T2DA/davidmackay0f-21>
Harold Lloyd films
</a> with its whimsy and speed.
</td><td valign=top>
<span style="color:#ffff00">☆☆☆☆☆</span>
</td></tr><tr><Td>
Next,
<a href=http://www.amazon.co.uk/Inspector-Calls-DVD-David-Thewlis/dp/B0144E0SW2/davidmackay0f-21>
An Inspector Calls</a>
proved to be a surprisingly gripping watch.
</td><td valign=top>
<span style="color:#ffff00">☆☆☆</span>
</td></tr><tr><Td>
We tried to continue the joy of viewing <a href=http://www.amazon.co.uk/Grand-Budapest-Hotel-DVD/dp/B00IONUN34/davidmackay0f-21>
The Grand Budapest Hotel
</a>
by watching the same director's <b>
<a href=http://www.amazon.co.uk/Rushmore-DVD-Jason-Schwartzman/dp/B00004RCM6/davidmackay0f-21>
Rushmore
</a></b>
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.
</td><td valign=top>
<span style="color:#ffff00">☆</span>
</td></tr><tr><Td>
Things picked up with the next DVD:
<a href=http://www.amazon.co.uk/Belle-DVD-Gugu-Mbatha-Raw/dp/B00KW5K99A/davidmackay0f-21>
Belle
</a>, 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 "<em>based on</em> a true story" in the opening credits.
</td><td valign=top>
<span style="color:#ffff00">☆☆☆☆</span>
</td></tr><tr><Td>
Last, we watched
<a href=http://www.amazon.co.uk/Little-Chaos-DVD-Kate-Winslet/dp/B00W81JIYS/davidmackay0f-21>
A Little Chaos
</a>, 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.
</td><td valign=top>
<span style="color:#ffff00">☆☆</span>
</td></tr></table>
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 <a href=
http://www.varsity.co.uk/news/9458
>awarded a knighthood</a>.
Many thanks to all my supporters and to my family!
<br /></div>David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com1tag:blogger.com,1999:blog-7192775552279094637.post-59597988812909697472015-12-03T22:02:00.001-08:002015-12-03T22:19:30.624-08:00Cycle 5 - getting the hang of chemotherapy<div dir="ltr" style="text-align: left;" trbidi="on">
<b>Chapter 13 - Starting to get the hang of chemotherapy [Friday 4 December]</b><br>
At the start of each cycle, my infusions of "E" and "C" are accompanied by loads of steroids, which
produce various side-effects including <em>Hmmm, maybe this isn't a nice topic to open a blog post with...
</em> Let's skip over the details and just say that after five rounds of experimentation,
I've figured out how to take preemptive Senna and Movicol
to manage this one.
<br><br>
In cycle 5, my chemotherapy doses have been reduced for the second time.
Apparently this is normal: they start off with doses that they think are likely to
be too big for the patient, then watch for side-effects and reduce the doses by roughly 20% at a time.
My dose of capecitabine (the toxin I take daily in pill form) was 1300 mg twice daily in cycle 1 and is now
800 mg twice daily.
<br><br>
Whereas in cycle 4 I felt washed out for almost the whole cycle, in cycle 5, I perked up from last Saturday (day 10)
to today (day 16), which is great.
Ramesh and I spent a day at Torrin's primary school (day 9) helping out with "Maths day". You can see Torrin enjoyed having
his parents in school!
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFJsOOPFmNbueQlQNd3EVicSf1qm97MYgXWSiMM084CC25X-dZo2cN44v0dDNdaLqi-hvM8Lod06yJSWciPcTto9wfbMg_CMJwzl7pTmGlyFRekr4NiSzvfP5RB8uVWL0oZPSi7bpkh3eM/s1600/DaddyAtTorrinSchLunch201511c.png" imageanchor="1" ><img border="0" align=right src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFJsOOPFmNbueQlQNd3EVicSf1qm97MYgXWSiMM084CC25X-dZo2cN44v0dDNdaLqi-hvM8Lod06yJSWciPcTto9wfbMg_CMJwzl7pTmGlyFRekr4NiSzvfP5RB8uVWL0oZPSi7bpkh3eM/s320/DaddyAtTorrinSchLunch201511c.png" /></a>
I went down to London last Wednesday (day 7) for a meeting at Google Deep Mind about using machine learning to
enhance climate science
and to see <em>Book of Mormon</em>;
and then again this Wednesday
to give a talk about <em>Why Making Good Energy Policy is Difficult</em> in the House of Lords.
<br><br>
Here is a graph of my haemoglobin and white blood cell measurements.
The green and blue lines delimit the "normal range" for each indicator.
The brown line at the bottom indicates infusion days that begin each 3-week cycle.
The yellow line shows whether I was taking capecitabine.
<br><br>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpmjEP9eM46HzWMRhxQ7x8xHWyCIQbca42b_iUc8v9lIl90SO1ArcRBem49LH2syghg38-iVD0d8yAfBsv8Ma2Rdx9tpUI9tgtIYUO9EKKPanApQ2emMcprZQqjugv9ky73zmiKKol37ga/s1600/bloods.eps.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpmjEP9eM46HzWMRhxQ7x8xHWyCIQbca42b_iUc8v9lIl90SO1ArcRBem49LH2syghg38-iVD0d8yAfBsv8Ma2Rdx9tpUI9tgtIYUO9EKKPanApQ2emMcprZQqjugv9ky73zmiKKol37ga/s640/bloods.eps.png" /></a>
<br><br>
The interesting features are: (1) the low haemoglobin [June] that kicked off the investigations that led to my cancer being
diagnosed;
(2) bouts of neutropenia (low white blood counts) at the end of most of the chemo cycles;
(3) monocytes are baby neutrophils, so high monocyte counts are a good sign of (temporary) recovery.
<br><br>
What else is going on?
<br><br>
The Huntingdon Road safety campaign #EddingtonSafety has not produced any positive results yet, but we haven't given up hope.
<br><br>
The children have been ill a lot recently; Eriska has followed up a lengthy snotty cold by contracting hand, foot and mouth disease.
The doctors tell me to avoid contact if possible, which is sad, because it's nice to cuddle her.
<br><br>
Last night we had an evening out at a new Thai restaurant, Thaikhun, in Cambridge. Yum.
Tonight we are planning a night out - thanks very much to Nanny for the babysitting! - to see <em>Bridge of Spies</em> at the cinema.
<br /></div>
David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com5tag:blogger.com,1999:blog-7192775552279094637.post-75749369666866894132015-11-09T13:58:00.002-08:002015-11-09T13:59:16.147-08:00Time off for bad behaviour<div dir="ltr" style="text-align: left;" trbidi="on">
<b>Chapter 12 - a welcome break between cycles 4 and 5</b><br />
<br />
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!<br />
<br />
<b>Other cancer news</b>... 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:<br />
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.<br />
b) the lymph nodes that showed up enlarged in scan 1 are a bit smaller in scan 2.<br />
c) there is a new secondary in a vertebra in my spine.<br />
So, a 2-1 score, overall.<br />
<br />
<b>Other non-cancer news</b>... We were privileged to have two memorable movie-nights-out: Last night we went to London for the UK premiere of <em>HUMAN</em>, 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 <em>Spectre</em>. Fun!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<table><tr><td>
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<br /></div>David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com1tag:blogger.com,1999:blog-7192775552279094637.post-17996635904297130732015-11-01T15:51:00.001-08:002015-11-01T15:56:56.352-08:00The fourth cycle of chemotherapy<div dir="ltr" style="text-align: left;" trbidi="on">
<b>Chapter 11 – Mid-way through cycle 4</b><br />
<br />
Cycle 3 finished without any problems, except for ongoing pain in the infusion vein in<br />
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.<br />
<br />
Cycle 4, right arm. <br />
<br />
Today is day 11.<br />
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.<br />
<br />
I've been keeping myself busy (1) giving one lecture for a new MPhil course in the department;<br />
and (2) working with other local parents on <b><em>The Campaign for Safer Cycling <br />
and Walking to and from the North West Cambridge Development</em></b> ["#EddingtonSafety"].<br />
I have made five youtube videos and learned how to put them into a playlist. <br />
<br />
<iframe allowfullscreen="" frameborder="0" height="344" src="https://www.youtube.com/embed/videoseries?list=PLiC0LFNhc8nXhNDSDGY0Kej475NGUmCF1" width="425"></iframe><br />
<br />
I've been using Facebook and Twitter, and our <a href="http://www.ipetitions.com/petition/EddingtonSafety">Petition</a> has gathered over 300 signatures, including roughly 100 from University members. <br />
<br />
I've been a bit manic about this campaign, and haven't rested enough. Today I stayed in bed all day.<br />
<br />
So: last cycle I kept my mind off cancer by working on the climate-cooperation Comment in <em>Nature</em>, 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.<br />
<br />
As day 11 gives way to day 12, I find I have a steadily growing sore spot on my lips. <br />
Tomorrow I will go to see my GP and ask him if all this aching body stuff is <br />
normal, and is there any way to stop my lips from falling apart?<br />
<br />
Then on day 13 I will put on my gown and will go to the Senate House to make <br />
a "remark" at a "discussion". </div>
David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com1tag:blogger.com,1999:blog-7192775552279094637.post-26081244954638693972015-10-12T07:53:00.000-07:002015-10-12T07:53:10.901-07:00The third cycle of chemotherapy<div dir="ltr" style="text-align: left;" trbidi="on">
<b>Chapter 10 – Mid-way through Cycle 3</b><br>
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!
<br><br>
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 <a href=http://www.mrc-cu.cam.ac.uk/fitzgerald_OCCAMS.html>OCCAMS</a>) 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 <a href=https://en.wikipedia.org/wiki/P53>TP53</a>, 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.
<br><br>
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4r90wlXdrcujzHA_cUC8lVFcY6SRkcXdYj6_3R8IzUwAfAOt4qZCRZ8TGc8tmSdxozoBEbJ2ElR64VTQgzaT99htazoKoWf97kNBMpa47LPSwnjBVZWBy_jVONC5VZxcOBp9PSrl8ljsV/s1600/IWill.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4r90wlXdrcujzHA_cUC8lVFcY6SRkcXdYj6_3R8IzUwAfAOt4qZCRZ8TGc8tmSdxozoBEbJ2ElR64VTQgzaT99htazoKoWf97kNBMpa47LPSwnjBVZWBy_jVONC5VZxcOBp9PSrl8ljsV/s200/IWill.png" /></a></div>
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 <em>Nature</em> Comment piece that I wrote with Stoft, Cramton, and Ockenfels.
As I said <a href=http://withouthotair.blogspot.co.uk/2015/10/how-to-design-climate-negotiations-use.html>on my other blog</a>,
I view this article as the most important thing I have ever written. When I wrote <em><a href=http://withouthotair.com/>Sustainable Energy - without the hot air</a></em>, 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.
<br><br>
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.
<br><Br>
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).
<br><br>
Apart from these four exciting outings, I'll mainly hunker down and work at home.
<br><br>
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.
<br><br>
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.
<br><br>
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.
<br /></div>
David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com0tag:blogger.com,1999:blog-7192775552279094637.post-48455201051143872902015-09-21T08:19:00.002-07:002016-04-02T05:11:13.432-07:00Neutropaenia and other side-effects<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="background-color: whitesmoke; color: #333333; font-family: "arial" , sans-serif; font-size: 14px; line-height: 21px;"><i>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.</i></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi8ssAZN3KFQHQPMsLBqqw-92-aVXo7g-uCOgOH9BOam8RdhTJn58_OHubwFJICYevqyQZ_Yt2SRJT0eNV02fsvzSbQqvYEEX6xUEqHYp3iZr26pCA2j-_u-YOnAhviN13yJIY962s2nYm/s1600/redAdmiral.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="301" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi8ssAZN3KFQHQPMsLBqqw-92-aVXo7g-uCOgOH9BOam8RdhTJn58_OHubwFJICYevqyQZ_Yt2SRJT0eNV02fsvzSbQqvYEEX6xUEqHYp3iZr26pCA2j-_u-YOnAhviN13yJIY962s2nYm/s320/redAdmiral.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A Red Admiral in our garden on a very sunny Sunday. Notice her black and white stripey antenna!</td></tr>
</tbody></table>
<span style="background-color: whitesmoke; color: #333333; font-family: "arial" , sans-serif; font-size: 14px; line-height: 21px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: "arial" , sans-serif; font-size: 14px; line-height: 21px;"><b>Chapter 9b - the medicine cupboard is not big enough</b></span><br />
<span style="background-color: white; color: #333333; font-family: "arial" , sans-serif; font-size: 14px; line-height: 21px;">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. </span><br />
<span style="background-color: white; color: #333333; font-family: "arial" , sans-serif; font-size: 14px; line-height: 21px;">As my side-effects multiply, the proliferation of prescribed medicines is remarkable. </span><br />
<span style="background-color: white;"><span style="color: #333333; font-family: "arial" , sans-serif;"><span style="font-size: 14px; line-height: 21px;">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 </span></span></span><span style="color: #333333; font-family: "arial" , sans-serif;"><span style="font-size: 14px; line-height: 21px;">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). </span></span><br />
<span style="color: #333333; font-family: "arial" , sans-serif;"><span style="font-size: 14px; line-height: 21px;">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. </span></span><br />
<span style="color: #333333; font-family: "arial" , sans-serif;"><span style="font-size: 14px; line-height: 21px;">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!) </span></span><br />
<span style="color: #333333; font-family: "arial" , sans-serif;"><span style="font-size: 14px; line-height: 21px;">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. </span></span><br />
<span style="background-color: white; color: #333333; font-family: "arial" , sans-serif; font-size: 14px; line-height: 21px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: "arial" , sans-serif; font-size: 14px; line-height: 21px;">To cheer myself up, I aim to read a Lord Peter Wimsey novel. </span><br />
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<span style="background-color: white; color: #333333; font-family: "arial" , sans-serif; font-size: 14px; line-height: 21px;"><br /></span><span style="background-color: white; color: #333333; font-family: "arial" , sans-serif; font-size: 14px; line-height: 21px;"><br /></span></div>
David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com2tag:blogger.com,1999:blog-7192775552279094637.post-87466702349845624642015-09-13T07:24:00.001-07:002015-09-13T11:46:32.430-07:00What do you tell the children?<div dir="ltr" style="text-align: left;" trbidi="on">
<div dir="ltr" style="text-align: left;" trbidi="on">
This is my second post about life with stomach cancer and palliative chemotherapy. I wrote my <a href=http://itila.blogspot.co.uk/2015/08/unexpected-signs-of-malignancy.html>first post</a> on day 15 of the first 21-day cycle of chemotherapy, and now here we are on day 11 of the second cycle.<br />
<h4 style="text-align: left;">
<b>Chapter 8 - </b><b>What do we tell the children? </b> </h4>
<b>What do we tell the children? </b> 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.)<br />
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.)<br />
Some lovely friends gave us some straightforward advice about what to say, and we have taken it: we simply say <b>"Daddy is ill, and the doctors are giving him medicine to try to make him feel better."</b></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi9tXyoFlr6Fu4EeCU_P_2TDBf1aQGCc5YUNwkTjLOcKWeOiaDXax-JziAETOQAtJsE4MMlBw-OcOuss5-ASQYxg64ahBOrfkDVoKxS82MZ3MaAbS3dsjsFjhk-FjGvlvnX0cGHWVLlzA/s640/20150909_171222.jpg" style="margin-left: auto; margin-right: auto;" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Girton playground - photo by Torrin G MacKay</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi9tXyoFlr6Fu4EeCU_P_2TDBf1aQGCc5YUNwkTjLOcKWeOiaDXax-JziAETOQAtJsE4MMlBw-OcOuss5-ASQYxg64ahBOrfkDVoKxS82MZ3MaAbS3dsjsFjhk-FjGvlvnX0cGHWVLlzA/s1600/20150909_171222.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> </a> </div>
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.<br />
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.<br />
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. <br />
And then keep on living. But I think it will be a while before that's possible.<br />
Meanwhile, here is what Torrin said to me yesterday morning: he burst into my bedroom and said <i>"Daddy, it's wakey-up time, and today we are going to have a party to celebrate your illness!" </i><br />
That's the spirit!<br />
<br />
<b>Chapter 9 - cycle two, day eleven</b><br />
<br />
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).<br />
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.<br />
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.<br />
During cycle one, I had a lot of days when I had fun, made plans, and did good work.<br />
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 <a href=http://oldchildrensbooks.com/looking-for-a-book>oldchildrensbooks</a> 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.<br />
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. </div>
David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com10tag:blogger.com,1999:blog-7192775552279094637.post-31950156972965891472015-09-11T01:26:00.002-07:002015-09-20T14:23:22.132-07:00New release of Dasher4.11 for windows<div dir="ltr" style="text-align: left;" trbidi="on">
<div style="font-family: Helvetica; font-size: 12px;">
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. </div>
<div style="font-family: Helvetica; font-size: 12px;">
</div>
<div style="font-family: Helvetica; font-size: 12px;">
Here are instructions for obtaining an updated <b>Dasher4.11. (for windows)</b></div>
<div style="font-family: Helvetica; font-size: 12px;">
<b><br /></b></div>
<div style="font-family: Helvetica; font-size: 12px;">
Latest improvements:</div>
<div style="font-family: Helvetica; font-size: 12px;">
1 you can turn off status bar with language selection. </div>
<div style="font-family: Helvetica; font-size: 12px;">
2 It will also ask you if you want to save changes on exit unless you uncheck "Confirm unsaved files". </div>
<div style="font-family: Helvetica; font-size: 12px;">
3 Also try "Composition application" style. </div>
<div style="font-family: Helvetica; font-size: 12px;">
4 removed Control text from control box to reduce clutter.</div>
<div style="font-family: Helvetica; font-size: 12px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
How to "install"</div>
<div style="font-family: Helvetica; font-size: 12px;">
Download and Copy</div>
<div style="font-family: Helvetica; font-size: 12px;">
<a class="cremed" href="https://drive.google.com/open?id=0B1rM5ktyjw-tNTY0UERZdVZBaEk" target="_blank">https://drive.google.com/open?id=0B1rM5ktyjw-tNTY0UERZdVZBaEk</a> </div>
<div style="font-family: Helvetica; font-size: 12px;">
to "C:\Program Files (x86)\Dasher\Dasher 4.11"</div>
<div style="font-family: Helvetica; font-size: 12px;">
(feel free to rename to dasher.exe, but save original dasher.exe first)</div>
<div style="font-family: Helvetica; font-size: 12px;">
Download and Copy</div>
<div style="font-family: Helvetica; font-size: 12px;">
<a class="cremed" href="https://drive.google.com/open?id=0B1rM5ktyjw-tTmlZeS1TbHZMQ0k" target="_blank">https://drive.google.com/open?id=0B1rM5ktyjw-tTmlZeS1TbHZMQ0k</a></div>
<div style="font-family: Helvetica; font-size: 12px;">
to "C:\Program Files (x86)\Dasher\Dasher 4.11\system.rc"</div>
<div style="font-family: Helvetica; font-size: 12px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
<br />
Source changes:</div>
<div style="font-family: Helvetica; font-size: 12px;">
<a href="https://github.com/ipomoena/dasher/commits/master?author=ipomoena">https://github.com/ipomoena/dasher/commits/master?author=ipomoena</a></div>
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwieD5uN5a-M4o5pwzVajVkUda2NPL7lWKNjROarjgt831Dzrej8LVCjnxxbqnpJZueH9HYBgTTtRa982QGCaULCw6rD5CMEcuJ5LPurb8rgJrH8e8lut9nNhZtWd2m5i7fwrksbHhOlTl/s1600/NewDasherPreferences.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="258" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwieD5uN5a-M4o5pwzVajVkUda2NPL7lWKNjROarjgt831Dzrej8LVCjnxxbqnpJZueH9HYBgTTtRa982QGCaULCw6rD5CMEcuJ5LPurb8rgJrH8e8lut9nNhZtWd2m5i7fwrksbHhOlTl/s320/NewDasherPreferences.png" width="320" /></a></div>
<br />
<br />
<div style="font-family: Helvetica; font-size: 12px;">
I will be dropping new binaries here: </div>
<div style="font-family: Helvetica; font-size: 12px;">
<a href="https://drive.google.com/drive/u/1/folders/0B1rM5ktyjw-tfkF4cGVIZ3B0NUhSUVU5NUFSVnRyLVR6ek5Pc1RTVk5tWWVaQ0RSLWMtMUU">https://drive.google.com/drive/u/1/folders/0B1rM5ktyjw-tfkF4cGVIZ3B0NUhSUVU5NUFSVnRyLVR6ek5Pc1RTVk5tWWVaQ0RSLWMtMUU</a></div>
<br />
<br />
If anyone would like to help maintain and improve Dasher, please get in touch (e.g. through github or by commenting here).<br />
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.<br />
<hr />
<small>
<b>More details for anyone else who wants to join in the development</b><br />
</small>
<br />
<small><span style="font-family: Helvetica; font-size: 12px;">Ada says:</span></small><br />
<div style="font-family: Helvetica; font-size: 12px;">
There is original source under <a href="https://github.com/GNOME/dasher">https://github.com/GNOME/dasher</a></div>
<div style="font-family: Helvetica; font-size: 12px;">
And my fork under <a href="https://github.com/ipomoena/dasher">https://github.com/ipomoena/dasher</a></div>
<div style="font-family: Helvetica; font-size: 12px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
I sync with original repository whenever I see changes.</div>
<div style="font-family: Helvetica; font-size: 12px;">
So far there were only non-conflicting changes. I believe ipomoena repository is latest code.</div>
<div style="font-family: Helvetica; font-size: 12px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
Eventually I would like to push my changes back to GNOME repository. Maybe after it stops crashing at exit.</div>
<div style="font-family: Helvetica; font-size: 12px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
I will copy/paste discussion about features to github tracker. <a href="https://github.com/ipomoena/dasher/issues">https://github.com/ipomoena/dasher/issues</a></div>
<div style="font-family: Helvetica; font-size: 12px;">
We can hone final design in there. One by one. </div>
<div style="font-family: Helvetica; font-size: 12px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
I know nothing about main installations for windows. I converted Visual Studio solution file so it builds dasher.exe, but installation targets are broken.</div>
<div style="font-family: Helvetica; font-size: 12px;">
<a href="https://github.com/ipomoena/dasher/blob/master/Src/Win32/Dasher_vc2013.sln">https://github.com/ipomoena/dasher/blob/master/Src/Win32/Dasher_vc2013.sln</a></div>
<div style="font-family: Helvetica; font-size: 12px;">
<br /></div>
<small></small><br />
<div style="font-family: Helvetica; font-size: 12px;">
Do you know how to fix install targets?</div>
<div>
<br /></div>
<div>
Thanks Ada!!!</div>
</div>
David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com0tag:blogger.com,1999:blog-7192775552279094637.post-22282596804893487732015-09-01T16:05:00.003-07:002015-09-01T16:05:39.080-07:00How to take apart and fix a Brio electric locomotive<div dir="ltr" style="text-align: left;" trbidi="on">
Favourite electric engine number 7 started working only intermittently. Electrical fault? Carpet fluff in the gears? <a href=http://torringhiassimackay.blogspot.co.uk/2015/09/fixing-brio-electric-locomotive.html>This photo blog details how I fixed it</a>.
<br />
<div class="separator" style="clear: both; text-align: center;"><a href=http://torringhiassimackay.blogspot.co.uk/2015/09/fixing-brio-electric-locomotive.html>
<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_a1daFnfOWck4NQPdxzaMSVB4cGDmkq1fL9jOA4S9yKqdtiWfqZLNZUGrhvLqUyqdXjbDCwtyt_lUdslNCsZyDWkOM_kAITzA0z-Fgf2NthMqJEOmjRJiwqiIBptDg0TTp9hNhfsNEwU/s320/20150901_200216.jpg" /></a></div>
</div>
David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com1tag:blogger.com,1999:blog-7192775552279094637.post-25158080775220597872015-08-27T17:30:00.002-07:002015-09-07T04:04:24.373-07:00Unexpected signs of malignancy<div dir="ltr" style="text-align: left;" trbidi="on">
<b>Chapter 1</b><br />
Bedside manner is an interesting thing. How should a doctor tell you things about yourself?
How should you pass on information to friends? How should I write this blog post?
<br />
My doctor told me something on Thursday 16th July 2015, and I'm going to write about it
here. I noticed that my doctor told me in a
slightly oblique way, flying past the central topic a few times, using slightly technical
language, and emphasising how unexpected the information was.
Somehow, this emphasis on the unexpectedness of the information made it
comfortable to absorb.
<br />
Here's why I was visiting the doctor: I'd been to see him two weeks before, because I was
feeling unreasonably exhausted - even walking up one flight of stairs was difficult;
he had done a blood test, found that I had anaemia, and had referred me to the hospital
for an endoscopy, which I'd had on the 9th of July. (Looking at the stomach was motivated
by a history of stomach pain over the past couple of years.) The endoscopy doctor had
told me, on the day of the endoscopy, that I had a stomach ulcer.
The Thursday-16th-July meeting was for me to hear more about the results of the endoscopy.
<br />
My doctor got straight to the point:
tests had been done on biopsies from my endoscopy; the letter from the hospital said
the ulcer showed signs of malignancy, most unexpectedly.
<br />
"Malignant adenocarcinoma", he said.
<br />
That's a cancer of the glandular tissue, he said.
<br />
"So you need to go for a CT-scan tomorrow, to get more information.
There's no reason to think it has spread at all. And in the absence of information about
the grade (histology) and the stage (degree of spread) it's hard to say what
treatment will be recommended; but almost certainly stomach surgery will be involved, soon.
I need to take blood today
for a kidney-function check before the CT-scan. Then next week after the CT scan, a
multidisciplinary team will meet to discuss all the results and make a plan."
<br />
He also said "you could drive yourself crazy reading about this on the internet"; he
encouraged me not to do that, but to wait to hear what the hospital team said.
<br />
So that was it. Unexpectedly off to hospital for an unexpected CT scan (cool!) to investigate
an unexpected cancer on a mildly surprising stomach ulcer.
<br />
Many friends to whom I have told my news in the last month have said "you must be
devastated"; but I didn't feel devastated. I just felt "ok, that's the way things are";
I started adjusting
my plans to take into account the new information. Friday's trip to London had
to be cancelled. Which Summer holiday plans would
we need to change? Which engagements might I need to cancel? Should I stop trying to raise
research funds to build up a new research group?
<br />
I found Ramesh in the village hall and we walked home together, pushing Eriska in her
pushchair.
<br />
I did a little bit of reading on the NHS website
about adenocarcinoma of the stomach. The probability of
surviving stomach cancer is not great, as this Tufte graphic makes clear.
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.edwardtufte.com/bboard/images/0000MK-378.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://www.edwardtufte.com/bboard/images/0000MK-378.gif" /></a></div>
"But hey, if only 20% survive 5 years, I aim to be in that 20%", I figured.
<br />
Naively I thought "almost certainly stomach surgery will be involved" implied I should be
planning for a couple of days in hospital some time in August. A friendly doctor
disabused me of this notion however - the normal treatment for early-stage
stomach cancer is surgery to remove some or all of the stomach and all nearby lymph nodes,
and it typically
takes at least a 10-day stay in hospital until the digestive system recovers sufficiently
from this insult to work at all; during those 10 days, you are fed through your vein and
a vacuum tube is put down your
nose to ensure that nothing gets beyond the oesophagus. Hmm, that doesn't sound fun.
<br />
I found an internet discussion group for people who've had stomach surgery for cancer
treatment. Lots of positivity about the eventual return to near-normality.
<br />
<br />
<b>Chapter 2</b>
Off I went for the CT scan.
What a wonderful Siemens machine! A whizzing circle. And a nice clinical scientist who
set up the injections and told me that as it went in it would feel as if I had wet myself,
but don't worry, you won't have. (She was right.)
<br />
On Wednesday 22nd July I met some members of my multidisciplinary team.
They said that the CT scan had not resolved the degree of spread; it looked like
several lymph nodes near the stomach might be cancerous, and perhaps one lymph node near the
aorta; and there might be something in the liver but probably not; so they wanted to do more scans
and a laparoscopy to pin the situation down. An MRI scan of the liver, to check that
there was nothing there. A PET-CT scan of the chest to investigate the lymph node near the aorta -
this would require special finance-paperwork because it is a non-standard test. And
a laparoscopy, which means inflating the abdomen with CO<sub>2</sub> and
putting a camera in for a look around, under general anaesthetic.
These things would probably take two weeks to complete, because the scanners are in demand.
<br />
After these investigations, the team would then recommend one of two courses of action:
either
<br />
1. treat stomach cancer with chemotherapy and surgery from mid-august (start of chemo) to roughly november 17 (surgery) followed perhaps by more chemo; all with the intention of cure.
The surgery would remove some or all of the stomach (and based on what I'd read, and the
location of my ulcer, I reckoned probably 'all' was the right thing to expect)
<br />
or
<br />
2. just chemotherapy, no surgery; with the intention to improve/extend quality of life but not to cure. [don’t bother with surgery because too much spread].
<br />
So the one fairly certain thing seemed to be that I would be in for chemotherapy fairly soon.
<br />
After meeting the gastric consultant and nurse specialist, I met a dietician, then
the dashing surgeon who was going to do my laparoscopy and (under plan 1 above) my
stomach surgery.
<br />
His bedside manner was very direct. After the laparoscopy, he said, we will know whether
it is good news or "doom and gloom".
And in the good news scenario, he would remove my stomach. Yes, the whole thing. He wasn't
bothered with hedging about any possibility of removing just part of it.
<br />
<br />
<b> Chapter 3</b><br />
We nipped away for a brief holiday.
The scheduling of the two scans and the laparoscopy was chaotic but in the end
all three took place very neatly on Monday 3rd and Tuesday 4th August.
And as I came round from the general anaesthetic on the Tuesday afternoon, the dashing
surgeon came in with a bundle of photos he'd taken and with his direct bedside manner.
<br />
"You remember I said the results could be anything between good news and doom and gloom?
Well, I'm afraid it's doom and gloom."
<br />
There are secondaries all over the peritoneum.
He showed me two of the pictures, which showed a thin white layer of tissue covering
much of the diaphragm.
He said he reckoned that without chemotherapy I might have roughly 12 months to go,
and the chemotherapy might extend things by 6 months or so, but was unlikely to
make me last more than 24 months.
<br />
My main reaction was "hurray! I get to keep my stomach!"
<br />
<br />
<b>Chapter 4</b>
<br />
At this point I started telling more friends and colleagues the situation.
I emphasized
"I am feeling fine and enjoying eating well in order to build strength."
Ramesh and I both felt determined to have some fun.
On 5th August I wrote
"There is still an option of having palliative chemotherapy, but I am not sure whether that will be a good choice, since it would eat into weeks or months of valuable time now in exchange for perhaps just a few months of extra time later; I’ll talk to oncology specialists at Addenbrookes today and see how they see the pros and cons." One of my main reasons for hesitating was my perception
that I was feeling fine right then, and August and September seemed a fantastic opportunity
for having some fun. Chemotherapy would spoil that opportunity. Was it worth it? Could I delay
the chemotherapy a few weeks?
<br />
I met my gastric consultant again, and met the head of chemotherapy at Addenbrookes,
who confirmed the surgeon's
rough estimates about life-expectancy.
He recommended that I take the chemotherapy immediately, even though the median
extension of life by chemotherapy was only about two months; I asked about the loss of
quality of life during the chemotherapy; he said the loss of quality was "only 20% or so",
and that the expected return (in terms of the area under the quality-of-life curve) was greater.
<br />
What about the PET-CT scan and the MRI scan? The MRI scan had shown nothing in the liver.
And the PET scan didn't show anything - apparently my cancer doesn't show up at all.
And they said that it hardly showed up under the original CT scan either.
<br />
I agreed to their recommendation of "EOX" chemotherapy. I had one week of rest to recover from the
laparoscopy (which left the tummy surprisingly sore for several days), then the following
Thursday I was back in the hospital for...
<br />
<br />
<b>Chapter 5 - the biggest red syringe I've ever seen</b>
<br />
It looked like something out of an Austin Powers comedy.
The nurse kindly squeezed it in.
Then put me on the drip to put in the second cytotoxin.
Then two hours later sent me home with my huge bag full of pills.
<br />
<br />
Oh, before I tell you about the chemo, I should insert a little addendum to Chapter 4.
<br />
<br />
<b>Chapter 4b - the last minute hesitation</b>
<br />
It wasn't "denial" or wishful thinking, but in the final day before starting chemotherapy
I found myself really concerned about the possibility that the whole thing was a big
false positive. After all, they had told me that the CT scan showed very little, the PET scan
showed nothing, and the MRI scan showed nothing. The only 'positive' evidence
we had to go on was a histologist's
report from the gastroscopy saying "malignant adenocarcinoma" and the photos and expert
judgement of the surgeon that what he saw was definitely secondaries all over the peritoneum.
But what if I have an unusual-looking peritoneum? And could the histology results have been
mixed up somehow? A bad histologist? Specimens mixed up? It would be stomach-churningly
terrible to undergo chemotherapy if in fact I didn't have cancer! I hadn't seen any data with
my own eyes that really convinced me. I was only agreeing to treatment because I trusted
the NHS staff. But I really wanted to feel more convinced myself. (My head of department
had just told me a few days before about a friend of his who had a misdiagnosis of cancer.)
Thankfully a friendly doctor suggested what to do - certainly, he said, samples would have been
taken from the laparoscopy too, and they should have been tested by now; I could ask
about the histology results. So I did that, and was told that those biopsies were indeed
cancerous too. As I said, I wasn't in denial. It's just that to believe things you
need either data that you understand or you need complete trust. I still wish I had seen
more of the raw data with my own eyes. I like data.
Anyway, with both the independent histology findings, I was happy to go ahead.
<br />
<br />
<b>Chapter 6 - Chemotherapy</b> - it's not nice, but I think I shouldn't complain. It's much worse
for some people.
Here is a probably-too-detailed account of
<b>
Side-effects and other recent history</b>.
<br />
1. During my first (EO) infusion I had no side-effects for the first 90 minutes, but during the final 30 minutes or so, I had cramps in my infusion arm, and weird sensations in the out-facing surface of that arm (see point 4 below).
<br />
2. Some of the infusion arm’s veins were painful and I still noticed slight vein pains (if I looked for them) on day 13.
<br />
3. I experienced some of the predicted (neuropathy) side-effects: my fingertips had sharp pins and needles sensations, especially in cold situations; this lasted a few days; my feet also had cold-induced pins and needles, for two days. My tongue was very cold-sensitive for the first couple of days and remained somewhat cold-sensitive (feeling like a puffy sock) for about 5 days. After 7 days the tongue returned to normal.
<br />
4. I don’t know if it is part of the neuropathy syndrome, but my infusion arm’s out-facing surface remained strange for about 7 days. During the first 4 days the skin and hairs were very sensitive to the touch; it felt like being stroked with a cheese grater - all over the arm, and especially the hand. By day 7, this cheese grater sensation was mainly confined to the back of the hand.
<br />
5. I didn’t have strong feelings of nausea.
<br />
6. I took steroids for 2 days as instructed. My stomach had some ups and downs which were eased along by senna and lactulose.
<br />
7. My mood became quite dark on days 1-3, then I perked up again by day 5 onwards.
<br />
8. I feel tired a lot of the time, and spend lots of time snoozing and sleeping.
<br />
9. I got a sore throat on day 11 (Sunday 23rd) and then sore throat and cough on day 12; the oncology clinic instructed me to get antibiotics from my GP and to suspend taking the "X" (capecitabine) for a couple of days while I get over the cold. This cold reached its worst on Wednesday 27th, and now (early hours of Friday) I think I am getting over it. (Increased vulnerability to infections
is one of the expected side-effects of the chemo.)
<br />
<br />
<b>How I felt about the side-effects.</b><br />
I didn’t enjoy the pins and needles feeling, but if it always were to go away after 5 days, that would be ok. However, the medics have indicated that
the neuropathy is expected to worsen over subsequent cycles. So I am going to talk to my doctors about switching to a less-neuropathic alternative to oxaliplatin at the next cycle this Thursday coming.
The down-sides of the alternative are “longer infusion, more chance of nausea”.
<br />
<br />
<b>Chapter 7 -
What's next</b><br />
There are probably going to be eight cycles of chemotherapy. Each cycle lasts three weeks, starting
with a Thursday infusion, followed by 21 days of pill-taking. Eight threes is twenty-four, which is
roughly six months.
Given how I've felt during the first 14 days, I expect I will feel fairly tired for
much of the next six months, and I'll probably spend most of it at home or near home.
So the having-fun plan is focussed in the Cambridge area for the near future, with aspirations
to do some having-fun further afield [perhaps on a Scottish island or two]
about February, March, or April.
<br />
I'm still feeling fine, and as I shake off the cold I am beginning to feel really perky again.
I've got a great appetite. My time spent snoozing is happy time, usually accompanied
by radio 4 comedies.
I'm spending a lot of time listening to music and transferring music from CDs to my computer
and my smartphone, so that I can have favourite music wherever I am.
<br />
The biggest weight on our minds is the question how to prepare
for helping our children (aged 4 and 1)
through whatever the next year or three throw up.
<br />
Here we are... we are all happy!
<br />
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<br />
I'll add another blog post here at <a href="http://itila.blogspot.co.uk/">itila.blogspot.co.uk</a> every three weeks or so, to keep you updated.
<br />
Thank you to our dear friends and relations for your support!
</div>
David MacKay FRShttp://www.blogger.com/profile/08023079754784119955noreply@blogger.com17