glen

Glen news from Clare

May 222019

Hello everyone, Sadly the time has come for me to update you all.

Glen passed away last Wednesday, 15th May at 12.30. It was peaceful, pain free and at home, just as he wanted. A very close friend of ours and I looked after Glen on in the hours before he passed, with sunshine and birdsong streaming into the room.

This happened terribly suddenly in the end, but as we know, Glen wasn’t one to wait around for things to happen to him in life, so it seems sort of fitting that he should apply the same principle to his passing.

I’ve tried to talk to as many of you as possible in the last few days and to spread the news by word of mouth wherever possible. Thanks for your kind messages and support. As a non social media user, I’ll only be checking the blog comments and Glen’s FB activity from time to time. If anyone has any urgent questions, my dear friend Genevieve has kindly offered to help. Her FB name is Gen A Veeve.

Glen didn’t want a big funeral, so we’ve planned something small and private. Thank you for respecting his wishes and our privacy at this time. I know some groups Glen’s affiliated with are already planning their own way of saying goodbye to him. I’d love to hear about any memorials/celebrations you decide to plan. Glen also didn’t want any flowers and had said that if anyone really wanted to do something, they could make a donation to a young person’s arts charity in his name instead. Or, feel free to pick another charity of your choice.

Sending you all lots of love and solace in this sad time.

Clare

…at least I’ve got fewer tablets to take.

Uncategorized 18 Responses »

May 062019

I have lived a good life. A really good one. I’ve had the fortune to meet, befriend, and work with incredibly interesting people and in some cases make some sort of impact. It hasn’t been a particularly long life – I’m not sure at what point I reached ‘middle age’ but if so I think I’m scraping the door.

I had some bad news about a 10 days ago. After some bouts of illness and delays in which I was too ill it’s clearly apparent just how drug-resistant and how aggressive this particular sarcoma is. I’ve had the word that I’m not just inoperable but at this point any treatment would probably kill me, so I’ve been transferred to the Guy’s & St. Thomas palliative care team.

I’m going to die within months.

Which I’m remarkably OK with. Ready-ish to pass, though not to leave Clare behind. All I care about is making sure she’s OK, really. There are tears and shock and there’s a mountain of legal crap to occupy my time.

BTW: Haven’t set up a will? Go set one up. Today. It doesn’t take long. Anything is better than nothing.

My days are spent – mostly – sleeping, eating, coping, dealing with crap. A little bit of work: Nesta are being unbelievably helpful and kind (helped on by UK/EU human rights laws and disability protection – but they are really above and beyond the call of duty. Which helps. I don’t honestly know what my value-add is but it’s non-zero and hopefully of use to my colleagues who are picking up the pieces after me.

Any ask?

Please, I don’t want any pity. I’ve had a good life. I’ve got an amazing wife and people who love me from right round he world. I’d love to hear how you’re doing and how things are going. Pictures of your kid, your cat, your dog, your trials and travails. I think what most people in my situation want is just to know that normal life is going on somewhere and to hear about it – the question I can’t really ever answer is “How are you doing?”

Thanks

For reading and following this and all your kind words. Sometimes you don’t win, but I feel like I’ve won at life. Wouldn’t mind another 40 years but this is what I get.

What they don’t tell you about Chemotherapy (& other assorted cancer life)

cancer 5 Responses »

Mar 162019

There’s an update buried in the musings here.

Way down at the end of the list of side effects of one of the steroids used to control my nausea it says “Very rare: <1/10,000: Hiccoughs”. Hiccoughs are funny, right? You burp and make a funny face and hold your breath and nothing works and then they’re gone.

Except when you have them for 3 solid days.

You get a lot of information when you get cancer therapy. A long list of things to watch out for (blood clots, high fever, chest pain on breathing, stroke symptoms) and a card to show that you’re on active chemotherapy which apparently bumps you up the queue at A&E (which I thankfully haven’t had to use yet). There’s all the usual stuff – hair loss, nausea, vomiting, pain, confusion, diarrhoea and constipation (yes, both possible in one day. Neither pleasant nor recommended).

Uncertainty becomes your watchword. Long lists if potential side effects and lack of clarity about the treatment’s efficacy.

I’m currently in the control group for a drug trial. The chemo I was on (Doxirubicin) “wasn’t having the desired effect” AKA it wasn’t working or it wasn’t working well enough. The decision tree pointed to a new therapy which looks promising with a control of an older therapy (Ifosfamide) as a solid treatment against which to compare. Obviously “Head of Innovation” me wants the new thing but my respect for RCTs also has me right there with the computerised coin toss.

Reader, I got the established treatment. Which is fine. Uncertainty reigns. Established Treatment might be the thing that controls this tumour. If so great (less my ~5-6 days a month in hospital and whatnot. And it means I get a PICC line, which is a tube that goes almost straight to the heart up the arm vein. Exciting. Pictured here.

It’s really the uncertainty that gets you – constantly unsure when you can schedule people to come round, or tradesmen do work on your house, or schedule work meetings more than a few days in advance. It’s the constant feeling like a tennis ball bouncing between different hospitals and specialists to work out what’s best, next. It’s the 6 drugs you get before the chemo to protect you from the chemo and the 6 drugs you get afterwards to help you deal with the side effects. The tiredness. The lethargy. The “one more trip to the chemist/post office is going to kill me” (and C, as always, is a star here.

I’m feeling and bearing up well, despite my enormous moan above. Yes, I’ve got all that going on and I get tired and breathless walking more than 50 metres but I live in a place with a significant social safety net (despite attempts to cut it due to austerity) every bit of which helps. I’ve got groups of friends sending messages of support and bringing food and wishing they could bring food. It’s kind of overwhelming (and the NHS staff are as always stellar, supportive, professional)

New haircut, new treatment, nutrition

cancer 5 Responses »

Feb 042019

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.

The impact people have on your life

Uncategorized 3 Responses »

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.

Exploding kittens in my liver, or, what’s been going on with me.

Uncategorized 11 Responses »

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

100 word review: The One who wrote Destiny, by Nikesh Shukla

100 word reviews, books, reviews No Responses »

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.

100 word review: Record of a Spaceborn Few, by Becky Chambers

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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.

100 word review: PROVENANCE by Ann Leckie

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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.

100 word review: BLACK WAVE by Michelle Tea

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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.

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