3wks post-amp, speaking at CamRARE’s superb RAREsummit ‘25 tomorrow. Spoken here previously - always a pleasure. This time: a panel on managing #MentalHealth #Wellbeing and #RareDisease - a topic of equal importance to sufferers, their families, and clinicians www.camraredisease.org/raresummit25/

Specialist corneal clinic yesterday. Left house 1430 and with delays/prescriptions home 1830. New anti-inflam drops to go with antib and hydrating. Spending today bingeing Netflix in a darkened room, armed with pastries. Some days you just keep plugging away. Onwards.

Taping eye shut at night seems to be working- keeping eye hydrated and letting the antibiotics do their work. It’s a faff, and a minor pain on removal each morning, but better than going blind. 😂 (I know it doesn’t look it, but trust me the eye is fully closed. Long lashes.)

Was really good to visit #HaldonForest today, albeit from the seat of an off-road powerchair. Can’t wait for sometime in January when I hope to be there with new legs and healed eyes enjoying the trails. Something to look forward to. Onwards.

How’s this for an album cover?

An adventure happened. Great to get up to #HalfonForest to borrow a ‘tramper’ off-road power chair and test some lovely @albion_cycling threads. I’m not cycling. I’m not running. I’m not even walking. But, as they say, #StayOutsideLonger. Good for your head. Good for your health. Onwards.

Yesterday, with repeated digging about removing stitches, was very much a ‘fuck it, I’m having another coffee’ day. Today feels like adventure. Now to try to convince Alice we need to go on one.

Had to go back in and see 3rd nurse in 3 days for last few problematic stitches- but at last all done now. Amputation site is looking incredible just 2 weeks and 2 days post-op. Amazing how much is already sealed/sealing. At this rate pre-Xmas prosthetic fitting might even be possible. Onwards.

Silver linings: in town and needed a post-hospital refresh, so back to #ChandosDeli Exeter. Cortado, pistachio cannoli, and pastel de nata. Magic. And an unexpected but welcome catch-up with @andrewbutlerphoto.bsky.social

Checking up on Roger in pharmacy after 3rd eye appt this wk. Confirmed suspicions: keep up antibiotic eyedrops for infection, then keep up hydrating eyedrops (8xdaily) and taping eye at night for 2-3 months until Botox dissipates, Not ideal but could be worse. Onwards.

A @dexinst.bsky.social board meeting tonight - an honour and a privilege to be voted Hon Sec for another year. Huge progress over the last 12 months; much more planned. Thank you to fellow trustees, the top-class staff, wonderful volunteers, and engaged members that make it what it is.

Dressing changed, stitches out. I’m not going to share a pic as still in gruesome mode. Everybody happy, really. Just more weeks/months of rest, clean, good food, sleep. Eye mostly behaving. Also back doing more work than I probably should, but there we go. Onwards.

So taping my eye shut last night rendered pleasing moisture dividends. We’ll be continuing that, albeit probably need to for the next 3 months. In other news Rog doing spectacularly. Stitches out tomorrow, 2 weeks post-op. Managed some emails over last few days, so energy also returning. Onwards.

For the benefit of Int’l/US viewers (esp @edwardgivens.bsky.social), here’s a #FishNChips supper with essentially mandatory pot of ‘curry’ sauce. Delicious, but apologies in advance to basically all of Indian cuisine.

FINAL NUDGE: last klaxon that I have written a new blog. Say hello to Roger (amputation #2), a happy weaning off heroin derivatives, and a Michelin-appreciation for custard. As usual, likes, comments, shares most welcome. I'll be quiet now. tomstaniford.substack.com/p/25-third-t...

Out in the wild today. Sublime banana bread and cortado #ChandosDeli while in the city for eye appt. Sadly no real progress on eye-continue antib’s and now taping shut at night. Occuloplastics on Thurs but suspect treatment will just be taping/time to allow paralysing Botox to dissipate. Onwards.

Bored on Sunday evening? Why not read my latest blog? It’s got double amputations, hard drugs, and custard. Lots of custard. tomstaniford.substack.com/p/25-third-t...

I’m so excited about having #FishNChips tonight with a medicinal drowning of curry sauce. I hope that all your weekends are similarly exciting, comforting, and encouraging. Be well.

WEEKEND READING: Trevor is joined by Roger. I go cold turkey on hard drugs. My eye decides to freeze. And there's custard. tomstaniford.substack.com/p/25-third-t...

Miffed. Fortunately been off the hard drugs two days now so free to self-medicate with a 🥃 or 🍷 later.

TW: 2nd image is a bit grisly. Day 9 post-op and Roger the amputation site is doing very well. No hard drugs yesterday and pain manageable so just paracetamol now. Sadly eye (other op) not happy, still swollen and (pic 2) won’t close. Emergency appt w surgeon at 2pm later.

Who knew the last few months would give me such a detailed appreciation for opiate derivatives and their differences? Oxycodone, oramorph, tramadol, codeine. I’ve floated with them all. At delicate stage now of cutting back to reduce hazy stupor while maintaining painkilling benefit. Going clean. 😂

This time last week they were sawing my leg off. 😂 Recovery going well- just many more weeks to come. Alice was cleaning my eye this morning (separate op, see previous) and Nurse Badger was keeping careful watch, as usual. Brig couldn’t care less. Hope everyone is keeping well. Onwards.

Home. Fresh air and communing with the beasts.

It wouldn’t be a hospital visit without gratuitous volumes of medicinal custard - shown here enveloping a lemon sponge Escoffier would be proud of. #NHS #MedicinalCustard #SecretWeapon #SuperFood

Hospital adventures. Mobile with Trevor and Roger. Yes, yes I do have the same T-shirt design in different colours (thanks Sam!). Unexpected progress across the board so they’re kicking me out tomorrow. In and out in 4 days. Beat my own record. When will the pioneering end? 😂

Hospital life. Some changes to the nerve block and medications. Gore conveniently covered with text. Trevor’s prosthetic v comfortable and really useful for pivots/transfers. Protein shake. Eye still recovering. Usual T-shirt. Onwards.

Round of applause, please, for Mr Hardy the surgeon and this incredible matching pair. Once again, standard BKA went better than expected. Many other positives today. Thank you to everybody who sent their best wishes- I’ve read and appreciated every one. Onwards. Work starts now.

And then there were two. Let the recovery begin.

The seduction is strong. Seen the consultants. Third time lucky. See you post-op. (Sorry to disappoint, but I do not have an OF)

3hrs today with the prosthetic, including some stretching, standing, walking. Only minor discomfort- need some socket tweaks. Skin looking and feeling robust. T-minus 2 days for other leg op. Usual bewildering feelings of impending loss mixed with relieved optimism.

Sunset at the dairy

Weelchaired to the gate and then stood to welcome Alice home. Why not, eh? #prosthetics #Day3

Actually, success! Took the opportunity to sneak in some pivot/transfer practice too. Shouldn’t have done that yet, and should’ve waited for Alice to come home, but if I spent my life following Doctor “should”s I’d never get anything done.

Daily tolerance practice with Trevor’s prosthetic leg. Haven’t stretched the final sleeve (that black rubber material you can see around the socket) because, as it’s new, it’s very tight and I can’t do it on my own. Roger T-minus 4 days.

Drinking coffee, recovering from exciting prosthetics testing yday and a lovely evening with good friends (and wine). Added ‘wearing prosthetics sleeve’ to my list of daily progressive training. All well at #MaisonDuStaniford. T-minus 5 days.

Trevor’s first 10 steps! #amputee #prosthetic #legless

Trevor’s first leg! #amputee #prosthetic #legless

Eye improving a lot each day. Still very puffy and cheek bruised though. 1 week until chop pt.2. And collecting first prosthetic leg tomorrow. It’s all going on.

Now I can claim the pomposity of being a ‘writer’ I have a few insights to reveal. Writing stuff is wonderful. Coming back the next day, realising it’s all shit, and rewriting it all again is less wonderful. Returning on day 3 and repeating the process, even less so. And on day 4….

Eye is continuing to heal - just tiring to keep focus. Healing is being supported by the plush comfort of my new favourite @hebtroco.bsky.social jumper - 100% British wool. I did some writing for them back in Bother #5 and took the opportunity to explore their wares. Well worth a look. hebtro.co

While editing the world’s worst poem from last night, I have actually written a whole new poem called ‘the world’s worst poem’. It’s about writing the world’s worst poem. Just to be clear.

Working on editing a poem today, which I wrote last night. It is awful. The world doesn’t need more bad poetry, and this one makes a valiant attempt at being the absolute worst. It makes my teeth hurt.

Worth your time watching

Timeline cleanse. Had a great sleep. Eye is doing ok. Coffee machine is pulling liquid gold. Need a haircut.

*grim photo alert* So in the end we did the whole surgery- not just Botox to the upper eyelid muller muscle to help it relax but also a “lateral tarsorrhaphy”. Essentially stitching part of upper and lower eyelid closer to help with closing and rolling eyelashes away from eye.

Only a small arrow for today’s procedure. But good to have some variety in the collection.

Wrote some words. Moderately happy. Big edit session tomorrow. Now at RD&E for minor eye op. Going to celebrate later with KFC for dinner. Don’t judge me. I want to bask in the Colonel’s love.