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 ❤️

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 🌿 youtu.be/cVORBIoegiI?si=Sj65… James ❤️

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

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

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.

👏👏👏

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. 😘

Fucking brilliant! Is this the “Kier Starmer’s a Wanker” crew again? Someone should give them an honour!

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.”

I’ve nothing positive to say. No matter how I try to spin it, there’s no fun in dying. It’s a rotten experience. Sorry to disappoint.

I’m laying my fears to rest shortly and trusting to lorazepam to carry me safely into the night. It’s been a difficult day for me, that’s why I’m so quiet. I’m so sorry to keep banging on about this dying thing but I hope it helps explain why I didn’t need another year of this just to add to the medical lab rat data set. However much of this I still have to endure. It won’t be as bad as it would’ve been had. I followed all their rules. You know what’s really sad? I’m trying to think of a song to end the day with and I can’t think of one. So I’m just going with rain music as usual. 😘♥️

You can’t often come across anything quite as starkly plain as this. The question she asked might be the first question but the second one is how do you fix it?

She’s just glued these days. 😔

I’m probably way out of date but this is absolutely gold dust,..,and would be so funny if it weren’t so true. Who did this to us, we must find them, try them and judiciously deal with them in the most severe way that a new law could allow.

Shades of Green - Ichi-Coo Park - The History Now live and public on YouTube Please like and subscribe to the channel, oh and please watch our little movie. youtu.be/cVORBIoegiI?is=H2s8… via @YouTube

Good evening folks! Bleary eyed but having had a very intensive day in a good way it felt like my best day for quite awhile. Good visit with my chest guy in Guildford. Squeezed in an urgent CT scan so tomorrow you’ll have a pair to contrast. Agreed taping on my steroids. Has recommended oxygen yay. Generally pleased with how things are going. My chest train is working and although it’s not the way it was intended to be it’s actually better as far as I’m concerned. I love my bag around in a carrier bag MS of course to avoid other peoples embarrassment. I mean who wants to look at bodily fluid coming out of somebody? I wouldn’t share this with anybody else but strictly between you and I, I’ve had some excellent bowel movements. You’d be amazed how much that improves one’s feeling of well-being! My breathing felt much better despite spending a lot of time talking today. I had a lovely group of people for a tour this afternoon and a bit of a food and drink thing afterwards. My wonderful supportive people handle the whole thing for me. I just had to chat and meet these lovely people who are all partners of my favourite charity Perennial or as I prefer to call it the Gardeners Royal benevolent society. Like I said, it’s been quite a day and I surprise myself with how much stamina I had. Whilst my breathing is definitely improved. I’ve lost a lot of muscle strength in my legs. What is it They say? he gives with one hand and take with the other. Now for the bit dread, getting into bed. I have to overcome this. It’s ridiculous. I think the lorazepam is my friend. Good night all thanks for listening to my ramblings. ♥️

When the person attacking you states explicitly that they are attacking you, and intend to attack you some more, I think we should perhaps listen to them and protect ourselves.