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.