Sorry for the lack of an update. I’m still in hospital and it’s honestly been so day by day that I haven’t been able to put something coherent that would answer your questions. Sorry if I haven’t been responsive to your texts, tweets, (I haven’t been on facebook in two weeks), whatsapps, etc. It’s all just a bit overwhelming.
First up, I am tending to write these pretty quickly, and C & I have very different presences on the internet. C tends not to be on it whilst I sprawl from USENET (whose alias was Guildenstern in 1993? Yyyyeahh….) through most of the social media crapforms who have lived and died deserved deaths as well as hundreds of angry posts on open source email lists from the late 90s.
C has been an absolute rock—for those of you who know her this will come as no surprise. I didn’t mention her on the previous note per our agreement (not to broadcast stuff about her life without her consent) but she is absolutely under as much (if not more) and different stressors. Please don’t forget the loved ones and the support networks if you’re going through something similar. The clinical consensus is that partners, carers, family, and friends go through the exact same emotional trauma.
The people who have impacts on your life
Impact is a funny thing – we talk about it a lot at work. Defining (desired) impact, achieving, measuring, and evidencing it. Uber’s impact is alleged to be disrupting a staid industry ripe for innovation and creating a whole new class of workers though it may just as well be attempting (and failing) to set a new floor price on transport by subsidising taxi journeys by around 30% and nicking margin from its drivers (not to mention flouting the law and making passengers less safe).
As I said earlier, there’s been rather a lot wrong with me bedsides cancer. I don’t know what other people’s experience is of being hospitalised on the NHS, but mine has been astoundingly positive. I keep meeting these kind, caring people really give more than a toss about their jobs. For the brainpower, time invested, and the qualifications, being a doctor or a nurse – 12 hour days, required nights, on call rotas, and the life disruption that comes along with it – doesn’t in a pure economic sense stack up.
I’ve had the pleasure of meeting several dozen people over the last few weeks – Not just my consultants here in the Gastro ward (on top of the excellent nursing team, too numerous to mention. At Kings, Dr. Amina Sharif and Dr. Jerri as well as John Devlin who I didn’t meet, in Endoscopy, Dr Meenan, in Interventional Radiology Dr. Mohammed, Dr. Irfan, and Dr. Athanasios along with about a dozen others whose names I can’t find or couldn’t write down.
Every one of these people (and more) I had this experience of meeting someone incredibly kind and professional who then went on to, quite literally, save my life, and I’ll never get a chance to see them again or thank them. (I said something to one of the doctors and she said she was just doing her job).
Thanks and requests
None of you can know how meaningful your messages are in different formats to me. I don’t always reply – honestly I can’t really keep up and it’s emotionally draining. Please don’t be upset if you hear I’ve responded to someone and not you. It’s just a matter of timing.
A few requests:
- Please don’t ask how I’m doing. I have to go through long series of stories with doctors, nurses, healthcare professionals. There’s an enormous range of possibilities in my future, some of which are actually too horrible to contemplate. Each procedure is a branch. I’ll update as and when. This goes double for C. She knows what’s going on and she’s on this journey with me. I know it’s difficult not to know, but the blow-by-blow is exhausting to live through.
- Let me know updates on your life! I’m rubbish at keeping in contact. I would love to see your three-year-old’s picture of monkeyfaced father christmases. Or hear about whatever. Don’t think it’s trivial. Normalcy is a highly prized commodity.
- If you have a question (I know doctors, nurses, cancer researchers – why didn’t any of you do sarcoma?- carers, people with a lived experience of cancer), please hold it. I’ll update with what I’m comfortable updating with.
- Not quite up to random calls but please feel free to propose times. I may randomly call you. If you miss the call please don’t feel like you’ve let me down.
- I (still) love visits, both to London and to hospital. Those are still going through C. Especially if they are of the faraway variety. But do let me know if you’re already coming through.
- Jokes are good, the darker the better. Did you know that in Nederlands kanker (cancer) is used as an insult, i.e. kijk je uit met jouw kankeroren means look out with your cancer eyes (if you bumped into someone on the street). I find this incredibly amusing.
- I’m no longer allowed to drink or have paracetamol (acetomenaphin for Americans) or anything hepato-toxic.
Sorry if that seems really demandy.
I entered hospital on 21/11 with a signiifcantly high (think 15x max, 3.5x ‘you have to go to A&Eright now’) jaundice and suspected liver cancer.
I’ve had a bunch of tubes stuck into me in various ways trying to get that resolved.
We also found out that my cancer is a sarcoma (1% of all cancers) and one of the rarer ones of those.
Getting my jaundice reduced would be the only way to be able to start addressing the actual cancer. That was difficult and accompanied by a bout of sepsis. We had a few scary times (they didn’t quite toss me into a tub of ice water but they were seriously thinking about it one night).
I’m coming out with all my levels moving – quickly – in the right direction, and a load of praise from the teams here on how well I’m handling. I’ve also got stents in my liver and one between my gallbladder and duodenum.
I’ll be going home probably-Friday. I’ll be on the priority list for the Marsden shortly after that (but some indicators have to settle down, so it may take a week). I don’t know what options are likely or who my main consultant is likely to be there (but they work in teams in any case).
Thanks again for your prayers, novenas, incense, thoughts, texts, emails, food, visits and love and support from right round the globe. I hope none of you never has to know how good it feels.