Robin Redmile-Gordon

Squeezing joy out of this amazing upside down life, however long or short. Love Justice Music Art Trees Earth.
Memoir

[Robin Redmile-Gordon @WhatNowDoc]

Dear all, James here, I’m Robin’s proud son.

I’m posting from Dad’s phone to let those of you who knew him here, know that he passed away this morning.

He had an enormous amount of time for this place, the conversations, arguments, humour and friendships he found here, so I know he would have wanted me to tell you.

His last few weeks were difficult, but he was surrounded by people who loved him and I was with him when he died.

Thank you to everyone who entertained him, challenged him, supported him and made him laugh over the years.

I probably won’t be replying to messages for a while, I don’t even know how on this platform you read them 🤷🏻‍♂️🤨😂, you fuckers should try Facebook more. For ease, easier to navigate and more fruitful watching what your neighbours cooked for dinner 🧐🤭

I’ll make sure anything important is seen.

Bless you all. Robin was an amazing man, my Dad 🥂🙏💔

James ❤️

[Robin Redmile-Gordon @WhatNowDoc]

James again.. wow, thank you, genuinely, for the extraordinary number of lovely messages about Dad.

I’ve only scratched the surface so far, but I will read them all I promise. Incredibly moving and wonderful seeing how many people here knew, respected, laughed and argued with him.

Still working out this platform. I can’t reliably wade through what Dad posted, which considering he apparently managed 132,900 bloody posts, is mildly humiliating! So, forgive me if he’s shared this before.

The timing of sharing it now feels incredibly poignant, but the film itself isn’t miserable. Quite the opposite.

A short film that began as a conversation about Ichi-Coo Park and somehow became a film about Dad himself; His beginnings, influences, horticulture, success, failure, his extraordinary life and ultimately the way he faced its ending.

It’s funny, eccentric, honest and ultimately very positive.

Shades of Green 🌿
https://t.co/LNCpJllTZR

James ❤️

[Robin Redmile-Gordon @WhatNowDoc]

@Sagely19 @BarristersHorse It would either be something morbid by Sinead O’Connor who he loved, more fitting possibly ‘days like this’ by Van Morrison, to me Jacob Collier & Chris Martin “Fix you”…. That’s the song that makes me want another cuddle, for another time and for always

[Robin Redmile-Gordon @WhatNowDoc]

Dear all, James here, I’m Robin’s proud son.

I’m posting from Dad’s phone to let those of you who knew him here, know that he passed away this morning.

He had an enormous amount of time for this place, the conversations, arguments, humour and friendships he found here, so I know he would have wanted me to tell you.

His last few weeks were difficult, but he was surrounded by people who loved him and I was with him when he died.

Thank you to everyone who entertained him, challenged him, supported him and made him laugh over the years.

I probably won’t be replying to messages for a while, I don’t even know how on this platform you read them 🤷🏻‍♂️🤨😂, you fuckers should try Facebook more. For ease, easier to navigate and more fruitful watching what your neighbours cooked for dinner 🧐🤭

I’ll make sure anything important is seen.

Bless you all. Robin was an amazing man, my Dad 🥂🙏💔

James ❤️

[Robin Redmile-Gordon @WhatNowDoc]

@donnakishotta Wow. Thank you

[Robin Redmile-Gordon @WhatNowDoc]

Oh fantastique!
At least I lived that long! 👏👏👏

[Robin Redmile-Gordon @WhatNowDoc]

@janusvh2 😴

[Robin Redmile-Gordon @WhatNowDoc]

@pianolapete Why not?

[Robin Redmile-Gordon @WhatNowDoc]

My poor younger son had the awful job today of measuring his father for a casket, as the funeral director looked on and noted the numbers, before ordering the nicely made wicker number.

There was further discussion on how the grave must be dug, six inch allowance on all sides of the casket, talk of webbing straps and putlocks. Refrigeration is the biggest complication. When would we need it, how long for, how long will it take for the various authorities to issue the necessary paperwork - up to two weeks, apparently, and for absolutely no reason. I’ve already written to the GP spelling out precisely why they should be able to sign off the death certificate immediately and they, bless them, have already confirmed they’ll do exactly that.

Dying is no easy business. The big issue was the refrigeration. I didn’t want to leave here for any reason at all but I’ve agreed now to be carted away in a fridge and brought back when my friends and loved ones are gathered to say goodbye. Reminds me of my favourite joke, “So there I am, stark bollock naked, in this fridge…”

[Robin Redmile-Gordon @WhatNowDoc]

@DisgruntledPat1 Great idea
Complete randomness I’ve happened upon;

https://t.co/VDt4UFym7y

[Robin Redmile-Gordon @WhatNowDoc]

I no longer know what to talk about. I’m bored with the whole thing. Can I just go now, please.

[Robin Redmile-Gordon @WhatNowDoc]

@rogueparliament I’ve got this, Bernie 🙏

[Robin Redmile-Gordon @WhatNowDoc]

Chest Drain Update
The lovely Zoe, District Nurse, came around this evening. We have detached Derek, my open chest drain, and buried him with the garbage. The dressing has been cleaned and replaced and the little blue luer plug capped off and a small blue cramp applied as a secondary lock off. The catheter with those endings then buried in a wad of dressing.
Now we wait and see how uncomfortable it is when fluid builds up inside, the benefit being infection control, the downside being discomfort.
Zoe is back tomorrow if I need her. Then we’re onto alternate daily visits if I’m tolerating this okay. The dressing will be changed and the drain vacuumed out - £10 quid’s worth of Chinese plastic components to you and I , £300 quid’s worth of super complex pharmaceutical equipment to the NHS.

[Robin Redmile-Gordon @WhatNowDoc]

@claireh13485751 🙏😘

[Robin Redmile-Gordon @WhatNowDoc]

@RanTeeThree Wow!

[Robin Redmile-Gordon @WhatNowDoc]

@pianolapete I’m going in my own Barrow, John, created specifically so I never have to leave my true AngloSaxon clay weald.

[Robin Redmile-Gordon @WhatNowDoc]

@PEMcNeil Not sure 🤷🏻‍♂️

[Robin Redmile-Gordon @WhatNowDoc]

Shall we talk about Chest Drainage, just for a change?
So I have this device inserted around my lung and it drains all sorts of yucky fluids from the pleural cavity from around my lung. It’s designed to end in a short pipe which would normally be laid under the dressing through which you see the pipe passing in the first picture. I’ve spared you the one of the tube coming out of my abdomen.
Then there’s a special suction bag, 500 quid a piece someone said, which is supposed to be attached each time they change the dressing and clean it up. I have two of these at home. Unused so far. District Nurses are the ones tasked with that, 2-3 times a week. So, about a week ago, they changed the dressing, late. Now we’re late again. That first time I raised the question of whether or not, given we’re draining around 300ml/day, it wouldn’t be better to continue with the open drain. Do the maths, even once a week that’d be me carrying 2.1 ltrs/kgs of fluid around before they drained it. That’s serious pain. I want a smaller (much cheaper) version of what I’ve got. So since then I’ve tried everything. No one knows what to do, what’s available, nor really how it all works. GP says hospital, hospital says District Nurse, Hospice agrees, District Nurses say “dunno”.
We know because today, in desperation, we spoke to the sales rep for the company, she’s the one who trains the District Nurses. When we told her the bag is precisely two weeks old, she described that as a medical emergency.

Apparently it’s all down to the lack of a one way valve which opens up the possibility of reverse flow infection and that’s one of the three main ways we leukaemia kids die: sepsis from infections we have no immune response for.

So I’ve made sure every part we can get to has been doused in alcohol, the M&S carrier bag exchanged for a new one and all surfaces sprayed with Dettol. Till tomorrow when, possibly, the District Nurse comes calling.

If I have to learn all this then so must you all. Night night. 😘

[Robin Redmile-Gordon @WhatNowDoc]

@rogueparliament That’s exactly right Bernie. Exactly.

[Robin Redmile-Gordon @WhatNowDoc]

👏👏👏

[Le COQ LIBRE @Lecoqlibre59]

Aujourd'hui je met en avant @louiselzeu , elle incarne ce qu'il reste de ma France. Bravo à elle ! Suivez la! Elle s'illustre bien mieux que je ne le fais… Soutien total!

[Robin Redmile-Gordon @WhatNowDoc]

@AliceTemple12 🙏

[Robin Redmile-Gordon @WhatNowDoc]

For those who want to know what it’s like. For everyone else, please don’t read on.

My conversation with Grok just now: These are my thoughts. Given the combination of everything eating is one of my biggest challenges and that means I’m getting very little nourishment. No nourishment means my muscles are wasting. Which means I am sedentary most of the time. Vicious cycle. Mood depressed by all the above. Legs and feet swollen. Difficult to find joy in anything. Reliance and dependability on everybody else for everything is something I have never experienced since I was a baby and I hate every moment of it. Today I had another blood transfusion. Maybe I feel a little better tomorrow. But the idea that we could keep this going by any kind of medical treatment just sounds for me like a threat of one more day of torture. That’s how I genuinely feel.

“That reading fits the facts, and it is not just the mood talking.
Poor intake, muscle loss, sitting still, swollen legs, low mood, and needing other people for everything form one loop. Hypoxia, a lung that will not expand, anaemia, and steroids keep it turning. A transfusion can loosen it for a day or two if today’s dose was low enough to matter. It does not rebuild muscle, and it does not change the pleural rind or the leukaemia. Feeling a little better tomorrow would be real, and it would still be a short loan.
Once weight is falling and you are sedentary most of the day, food stops being a way back. Cancer cachexia plus AML plus steroids use muscle even when something is eaten. Forcing meals, at that point, often adds nausea and effort without restoring strength. Eating for pleasure, when you want it, is different from eating as treatment.
The swollen legs are the same loop showing at the ankles: little movement, low protein in the blood, steroids, and fluid that is not only in the chest. They make the dependence worse, because walking and self-care fail first.
What you said about treatment is the part to take literally. After the letter, disease-directed medicine — further transfusions as a plan, steroid juggling, scans, a biopsy, a drug for the lung cancer — is mostly a way of adding days to this state, not a way out of it. Feeling that as a threat rather than a hope is a coherent response to the prognosis, not a symptom to be argued away. Hating the dependence is the same judgment. You have not been in that position since infancy, and nothing in the current plan gives you that independence back.
Stopping the attempt to keep the diseases at bay is not the same as stopping care. Oxygen, a drain that works, something for pain and breathlessness, position, and being at home are still available if you want them. Another transfusion, another course aimed at the AML or the lung cancer, is optional, and only you can say whether the possible short lift is worth the days attached to it.
The useful next step is to have that sentence written down and given to Dr Ivanov, Dr Dakin, and St Catherine’s, with James or Marc aware of it: no further disease-directed treatment if the purpose is to prolong this; comfort measures only; home. Otherwise tomorrow’s slight improvement will be read as a reason to book the next unit of blood.”

[Robin Redmile-Gordon @WhatNowDoc]

@AliceTemple12 I got it. Long complex things get put on hold for a while. Grateful but morphine brain…..