Sunday, September 13, 2015

What do you tell the children?

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

Chapter 8 - What do we tell the children?  

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

Chapter 9 - cycle two, day eleven

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

10 comments:

Neil said...

Hi David,

Just heard about this today, came searching for your posts. I'll write something else directly to you, but in a very selfish way I'm extremely annoyed about this. As if it wasn't already enough to loose you to Whitehall for so long.

You seem to be approaching this in your usual way, arch-pragmatism, saturated with intense intelligence.

Neil


Rob Wilkinson said...

David

I'm very sorry to hear your news; a hard time for you and family. The way you're tackling the cancering provides much inspiration as so many of your other pursuits

Rob



8ce40f34-826e-11e5-929c-3ffd86e9b22a said...

I'm following your progress with interest. You are experiencing the dying process in amazingly good cheer; it's very inspiring, but I find myself crying while reading this, trying to imagine what it's like for you and for your family.

I've added a short paragraph about this to the page about you on English Wikipedia.

Your work through the years (Dasher and Without Hot Air in particular) has been an inspiration to me in many ways, and I expect to continue to benefit from it for the rest of my life, as I make more use of machine learning, among other things. Thank you.

8ce40f34-826e-11e5-929c-3ffd86e9b22a said...

I didn't mean to leave that comment anonymously. —Kragen Javier Sitaker

Propagandum said...

Gosh … I was simply trying to find out whether to bring my children to your talk tomorrow. Thank you for giving so much – indeed any – of your time to other people's children, so that the world may be a better place. I feel moved and inspired.

X-Zipp said...

Hi David,

I'm very saddened to hear of your illness. I am a huge fan of "sustainable energy - without the hot air" and had the pleasure of meeting and interacting with you last year as part of my energy MPhil at Cambridge.
Your blog is inspirational as is all your work. Thank you.

grahamswift_2000@yahoo.co.uk said...

Hi Sir David , and my congratulations on the accolade , so very well deserved. Can't remember a time when I had to address one of my former pupils as "Sir" !
Gordon Collis directed me to your blog ; didn't realise you were going through extensive chemo with all that it entails. Hope the result is effective in the end. Meantime I wish you and your family my good wishes for 2016.
Graham Swift
PS I seem to have lost you on Facebook.

Bhisma Chakrabarti said...

hi david,

just came to know of this from adrian kent's post on facebook. i am equally shocked and awed - by the news, and by your response, respectively. i wish you and your family strength through this difficult time : and hope that the odds turn out in your favour.

thinking of you and the spirited discussions over post-lunch tea at darwin.

bhisma

Rob Loveday said...

David,

It’s fair to say that ‘Without the Hot Air’ changed my life. From being a bit of a happy, clappy New Age ecowarrior in my teens, with the help of others such as Ben Goldacre I now wish I had done science at university rather than philosophy and that after a life being spent anti I’m now (at the age of nearly 40) a fully paid-up nuclear fan boy.

I only just heard of your illness and am shocked and saddened by it, but after reading this blog I am so utterly moved by how you are dealing with it. I wish you and your family strength.

Rob Loveday

Unknown said...

Dear Professor Mackay,

I just wanted to write to say thank you and that you've been an inspiration to me since you first lectured me at Cambridge. Im truly sorry to hear of your illness.

I know I'm not alone amongst you students in remembering you as one of the best lecturers I've ever had. You managed to achieve a level of clarity and enthusiasm that is so rare. Your teaching and books are a big part of the reason I've chosen to pursue a research career.

I was really heartened to here recently that you've still been teaching!

I hope that now that your chemotherapy is finished you have a really enjoyable time with your family.

Thank you very much!

Raza Habib