glen

Feb 042019
 
New haircut, appropriate to diagnosis

Sorry for the radio silence. You’d think that after several weeks of bouncing between three of the world’s top hospitals for various appointments I’d have more news, but you’d be surprised. Lots of information, plenty of progress, but not much to report. Such as it is, though…

Nutrition and evidence

When you get cancer you get a lot of unsolicited advice. I understand where it comes from – specifically from a place of love and a desire to support people. People have different approaches and love and kindness are always appreciated.

However.

There’s a lot of bad information out there, especially about cancer. My specialist oncologist nurse has a list of trusted sites (Macmillan, sarcoma.org.uk) which hold reliable information, but they are completely overwhelmed in volume and amplitude by the hordes of well-meaning people without an evidence base to back up what they’re saying. New haircut, new treatment, nutritionThere’s a lot of bad information out there, especially about cancer. My specialist oncologist nurse has a list of trusted sites (Macmillan, sarcoma.org.uk) which hold reliable information, but they are completely overwhelmed in volume and amplitude by the hordes of well-meaning people without an evidence base to back up what they’re saying.

A lot of this information is actually harmful. Dangerous. Hypotheses presented as fact that are in fact conjured up from a range of unproven, baseless earlier theories. Often some sort of science is behind them. The worst part is that they’re often buried in with some good advice, typically things like eating plenty of leafy greens, olive oil, brown rice, and following general nutritional guidelines. An example (I’m bloody well not going to link to any of this) might be a suggestion to take large supplements of turmeric, cannabinoids, vitamin c, or whatever. Another might be a suggestion to fast for 24 hours before and after a chemotherapy treatment.

No.

Chemotherapy is very hard on the body and your body needs fuel to help deal with it. They are literally pouring poison into your veins in the hope that it will kill cancer more than it kills you. Overdosing on anything, from turmeric to vitamin c can interfere with your body’s natural ability to absorb nutrients and block receptors. (we’re not talking about adding an extra teaspoon to your dal, we’re talking about supplements approaching a gram of turmeric several times a day)

And cancer is fucking terrifying. It’s a new growth, a mutated part of your own body that wants to eat the rest of your body. Dozens of doctors and specialists come along with treatments that make you feel awful and have side effects as long as your arm any one of which would give you pause if you weren’t potentially dying. All of this means your life becomes one big pile of uncertainty and you don’t feel in control.

The desire to feel in control is completely and utterly understandable.

Every person who gets cancer has to decide what, if any, treatment they will undertake. Some choose a naturopathic route and that works out OK for them. Some take the chemotherapy route and experience all the side effects and they die anyway.

I’ve considered the evidence and I’m going down the chemo route (with all the support, from the dieticians to the physiotherapists to the oncologists to the existentialist psychotherapist and more, that the NHS can and will give me.

So while I recognise that this route doesn’t work for everyone, I ask for any and all of you to respect the choices, however stupid and wrong you think they are, of those who have to make these choices and not foist your own values on them.

Status

Had a bit of a wobble today when I scratched my head and pulled out a pinch of hair. Realised it was time to take back control, and not in the Brexit blue passport sense. Bought a pair of shears and gave myself the lovely new haircut you see in the attached photo.

Have had first round of chemotherapy. I feel… pretty good, actually. Despite the hair. I’m due for the second round on Friday and sort of assumed that side effects from round one were over, hence the wobble. Getting a reasonable amount of exercise, going to work around 3 days a week for around 5 hours at a time (working from home otherwise). Nesta have been incredibly supportive, from moving me onto the investments team (with a lot of fascinating opportunities to work with some really good companies – a good follow-up from my BGV days). I still get tired but it’s almost like I haven’t got a fist-sized lump of mutated me trying to kill the rest of me. Almost.

So, overall, doing well, feeling good, getting stronger, working, and enjoying every sandwich.

Dec 192018
 

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.

The update

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.

 Posted by at 21:33
Dec 032018
 

At least there's a nice view

Hi everyone.

This is… not easy and really shit.

Some of you know I’ve been tired and out of sorts for a few months, and that I had to cut a work trip to Viet Nam short. I’m currently in hospital (St Thomas’ in London) getting another battery of tests done. I came back jaundiced and saw my GP who did some blood tests and tried to reassure me that it was most likely Hepatitis A. When Hep A is the good result, obviously, the range of options aren’t great. After dropping what feels like a litre of blood into various teensy vials, three trips to A&E, two ultrasounds, a CT scan, and a panel of experts looking at me I got admitted to hospital (yes I used an Oxford comma there I can’t be arsed to work out if it’s clearer without so I’m leaving it)

They’ve (very painfully) stuck a tube in my liver and are draining the bile externally and internally (sexy!). I also had a biopsy done.

Long story short (ish, I know I blew through 200 extraneous words my editor would trim up there), I’ve got cancer, specifically, metastatic leiomysarcoma. It’s coming from my duodenum and it’s gone into my liver. Which means it’s inoperable, but not untreatable.

HOWEVER I also have problems with my liver bile ducts aren’t draining properly, so I’m still jaundiced, and the cancer’s pressing on my duodenum (the first bit of the small bowel where food exits the stomach). I’m down about 13kg and if they tried to give me chemo at my bilirubin level I’d die.

So, priorities.

The upside: Guy’s and St Thomas’ (GST) is absolutely THE place to go in the whole UK, if not all of Europe, for my gastrointestinal pre-cancer treatment. The NHS has just finished a 10 year overhaul of how it approaches cancer treatment and has improved on all indicators. There are loads of treatments that weren’t available 2 years ago and more coming online. And a friend who is a cancer researcher has looked at my team and said they are world class. Further, I’m being fastracked to the Royal Marsden which is the absolute top in Europe for sarcoma.

As an aside I would really love it if Parliament could get off its collective arse and stop this Brexit nonsense as it’s actually likely to be the biggest single policy danger to my life. Pick a mechanism, but the current malarchy mentions science cooperation only in passing.

It’s not just the clever consultants and senior doctors. Every member of NHS staff, from my GP to A&E team at AM2 in St. Thomas’ to the nurses on the wards to the assistants and cleaners work here because they care about people and it shows. I’m getting such attentive, solid, evidence based care that I have a wee breakdown most days. I would put them up for OBEs and above in a heartbeat. It’s also in stark contrast to the treatment I had at A&E(ER) in America in August. They did an ultrasound but, rather than using a trained radiologist they had the trainee doctor do it, so whilst they looked at my liver, pancreas, and gall bladder, they didn’t notice the unexplained mass between the three of them.

Identity and next steps

I’m not going to put together a facebook (or *shudder* linkedin group). I’ll probably work out some sort of email list or something but to be honest I haven’t got there yet. There are a lot of people from a lot of places.

Please from this point forward feel free to talk to people I might have missed out. Please ask them not to be offended, or don’t be offended if you didn’t get a call. I absolutely ran out of emotional steam and tears on those.

About my identity: for me, cancer is something I’m experiencing, not part of my identity. Please don’t be in touch using language like “warrior”, “survivor”, etc, especially not “cancer warrior”. It’s not for me. I’m ill, getting care, and going to (try) to get better. (Which is a remarkably subjective idea, as it turns out.)  This isn’t to disparage anyone else who that kind of language helps.

I would love to see you but I have to see how things go. I’ve phoned some people, emailed others, and some of you are going to find out by social media. I’ll keep updating through these channels. It’s going to be crap, but I’m finding surprisingly resilient – albeit with a renewed sense of gallows humour. Visitors welcomed, as are texts and whatnot, but please don’t be upset if I don’t reply. This is all very overwhelming.

Please, please, no-one set up a gofundme or anything. I’m getting excellent world-class care on the NHS, completely free, and it’s the best care I’ve ever received. I’m on the fast track due to my age and whatnot. Going private won’t change anything at all. If things get to that point I’ll pick a charity and let you know where to put your collective ironmans and marathons.

Big news. Thanks for reading all the way through.

Glen

 

 Posted by at 12:05
Jul 312018
 

The One Who Wrote Destiny is about siblinghood. Family. Immigration. Generations. Identity. Love. Death. Choice.

Bricks in the night, 1966: Mukesh is a normal teenager in Bradford just trying to celebrate Diwali and meet a pretty girl whlist not getting beaten up by a fit arsehole.

The wrong laughter: Raks wants people to laugh at him, but not like that. He’s funnier than he seems, but mostly confused.

DNA is code: Neha is successful in her own way until she has to face dying.

Shukla weaves their stories together into a gorgeous flow of images and colour and it’s unputdownable.

Jul 182018
 

I have thinks (and significant feels) about Record of a Spaceborn Few by Becky Chambers. Before the review, some scene setting:

A Long Way to a Small Angry Planet is a fun adventure story about finding yourself, love, and loss, and it introduces you to the Wayfarer universe, which is diverse and fun and interesting.

A Closed and Common Orbit is about who gets to be people: slaves, weirdoes, machines, or everyone.

100 words on Record of a Spaceborn Few

We come to Record of a Spaceborn Few, which takes place in the same universe on a fleet of generation ships. Humanity has spread to the stars (joining the galactic civilisation along the way) and a few scattered remnants choose life on their ships having reached no destination, orbiting a sun without planets. Chambers twists yet again, telling a small story of a few lives which is, in the grandest traditions of science fiction, completely different and disconnected from earlier Wayfarers books. It’s about what it means to be humanity, to be a community, and to find purpose and belonging.

Sep 262017
 

If you expected Ancillary++, you’ll be disappointed. Leckie has gone from big to small – the Radch Empire makes only a small appearance. Where the trilogy was big – gender, class, humanity and empire-spanning revenge, Provenance sits on a smaller, more personal scale, digging into what family means.

Ingray is the adopted daughter of an important politician on a minor world. She engages smugglers in one last chance to impress her family – and it goes wrong. She has to forge new alliances to save her small unimportant world. It’s a different style, slower than Radch – with less driving action, but it works.

 Posted by at 09:57
Jul 072017
 

The end of the world typically doesn’t bother with heroin, politics, and books.

Memoirist and poet Michelle Tea delves into a very personal the end of the world stepping backwards and sideways to an alternate 1999 San Francisco – gentrification still sweeping across the city & cleaning up the drug-addicted lesbian punks.

Protagonist Michelle takes us along on a very personal apocalypse – exiting the life she knows for another, feeling her family fall apart, leaving her beloved San Francisco for LA, which may have brought about the end of the world. It’s gorgeous, and funny, and like nothing you’ve read before.

Jun 132017
 

Oh my bloody god this book. This series. This writer.

Ninefox Gambit was my one book of 2016. The one I wanted to win all the awards. The one I was doubly-disappointed to be skipping a year with The Kitschies.

Twisty-turny maths-based alteration of reality meets big evil empire and mad geniuses. It gets weirder and, oddly, a bit easier to follow. Probably worth reading Ninefox Gambit again. I did. It’s worth it.

In three pages, Shuos Jedao and/or Kel Cheris turn up and capture a fleet. Then it gets better. Difficult  to talk about without spoilers. But trust me.

Out in June.

Apr 242017
 

If I had any problem with The Girl with All the Gifts it was the same as I’ve seen elsewhere: It’s very good, but it’s Yet Another Zombie Book.

This, despite being in the same universe, goes way beyond that. The hungries (zombies) aren’t the main feature: here it’s the humans, and what happens to them, and humanity’s discovery of new and different types of hungry, and how we may be wired to screw it all up, always and forever. This book is a real joy – it stands alone, and, if you have a heart, its strings will be tugged.

Apr 192017
 

Ed note: This was written in 2013 and just turned up in my drafts folder. Oops. Have it now!

Jesus and the Eightfold Path

Somewhere between the manger and gathering fishers of men, Jesus grew up. Lavie Tidhar presents us with a Jesus learning from three wise men: Pig, Monkey, and Sandy, from the Chinese classic Journey to the West. What Tidhar does, in this very fun, silly, and easy-to-read novella is blend of myth, history, and fancy. The thing that I love about this is Tidhar’s ability to be irreverent, researched, and respectful, all at the same time. This slim volume is fun, insightful, and highly entertaining. It could easily have been none of those things – if you get a chance, read it.

 

You *might* be able to get it here (UK), but the publisher says it’s out of print.