Tom Staniford

Wrote lots of stuff today. Sadly all admin, none of it creative. Rewarding with #FishNChips tonight. And tomorrow hope for a return to creativity.
Eye and Roger both doing well, thank you.

Healing ongoing. Can’t wait to get back to 15hrs a week z1. #SnailClub

‘Real’ tickets still available, but so are digital tickets (link above). Who could deny the attraction of an interesting and engaging medical conference enjoyed from the comfort of your favourite chair at home, in your underwear? Not me.
And to any attendees, please do come over and say hello!

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/

Ok. Thealoz does the trick for me. Around 8 times a day.

Not ideal for someone profoundly deaf

Thealoz duo. Why?

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.

He also looks like a Cairn Terrier.

Both Yorkie Russells, but the lighter one also has a smidge of Mexican fire (chihuahua).

No, eye lid slips up

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.

Should be #HaldonForest.

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.

I find that ‘it you don’t you will go blind’ is a tremendous motivation for me. 😂

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

That is a tiny fraction of all the other things. 😂

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.

The problem is that mushy peas and curry sauce are lumpy, so can accommodate the liquidation. HP is already runny. Additional is concerning. But if I see it I’ll try it.

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.

Put it this way; I’m not rushing out to give it a try.

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.

😂 evidently not a follower

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.