I say that with a shedload of ironic detachment, and a lot of genuine satisfaction. Admittedly, this ‘rock bottom’ is more from an exercise and physiological performance perspective - no fitness - rather than an emotional or basic existence one. What I mean is that, following many years of trying, I’m now on a fairly even keel in the sense that we know what we’re playing with, and can start building, with no surprises around the corner. Famous last words?

I like riding my bike, and I like pushing my limits. So after my what I suppose we would term my cycling ‘heyday’ of 2009-2013, and earning a crust took precedence over amateur sport, I have staged numerous ‘comebacks’ to try to return to former performance levels. There are plenty of people out there who can compete at an elite level while holding down demanding full-time jobs, but sadly I have not been one of them, as yet.

In my case, what typically begins as enthusiastic commitment to training is often derailed after 1-3 months by either an existing medical issue flaring up, or a new one presenting itself. I do hate listing my medical conditions, and risking this blog becoming a sort of depressing litany of eye-rolling pseudo-pity, but the aborted comeback years of 2014 up to now have offered a vibrant journey in healthcare developments:

• My previously moderate #HearingLoss inexplicably deteriorated, to the point of being profoundly deaf in both ears, necessitating a #CochlearImplant and all the sensory and social disruption that entails. 2 years in, I’m still improving my hearing ability with this fascinating tech.

• My previous 20/20 fighter pilot vision also inexplicably deteriorated, which later turned out to be #keratoconus (unconnected to MDP syndrome, just another win in the genetic lottery) also requiring surgical intervention - corneal cross-linking. Issues with chronic dryness and multiple infections have continued, with associated surgeries for sewing part of my eyelid shut and even Botox in an attempt to guide muscle contraction.

• My previous (sorry, this is becoming a theme) dexterity also inexplicably took a hit - nerve impingement at elbow from a previous injury and ongoing connective tissue tightening contrived to tear the tendons on the back of my hand off the knuckles. This additional friction, alongside tightening in the muscles of the palm has effectively turned my right hand (and I’m right-handed, not ideal) onto a claw. I can close it, but I can’t really open it. There endeth the 25 year classical guitar hobby, and limiteth (I’m making up words now) the lifelong fountain pen use, and fuckupeth (see?) my handlebar grip and gear shifting on the bike.

• About a dozen infections to wounds on my fused/warped feet, alongside increasing wheelchair use to try to manage them and associated pain. The 90% wheelchair use of the last 3 years also meant, with minimal weight-bearing on my feet, the bone density was dropping and the bones were starting to crumble - massively raising more serious infection risk and leading to my decision to amputate both lower legs and avoid the whole circus (there’s a pun in there somewhere about cutting things off at the legs).

So, these developments have not been the most conducive environment for consistent structured training, and go some way to assuaging my guilt at unfulfilled potential and a dozen years of, to be frank, sweet FA on the cycling front.

Now that I am in a rambling mood, I think the last structured training I managed to do (an impressive 4 month run) was coached by the very nice Matt Clinton back in 2017. (Very much recommend his coaching services, by the way, he was superb).

I should also give credit where it is very much due; helping me try to overcome the above issues (all failings are entirely my own) has been Jon Iriberri at Custom4.us, Phil and Jules at Cyclefit, and the inimitable Phil Burt - they all constitute a kind of collegiate expert panel who patiently indulge my biomechanical misadventures.

And while I’m here, Phil Cavell (Uncle Phil as he is known in this household) has released his second book, The Cycling Addiction - likely to be another bestseller. Run, don’t walk, to purchase, and if you haven’t already, his previous, The Midlife Cyclist is also a pretty much obligatory read even for those with limited cycling interest or ambition. He also has a top quality blog at https://philcavell.substack.com

Anyhow, returning to the rock bottom gift theme, I still have some hand surgery due late this year but I don’t regard that as being too disruptive - turbo trainers exist for numerous reasons. My eyes, ears, and legs are the most stable they’ve been in 12 years, placing me in the aforementioned enviable position of having a body which (mostly) works for the first time in years with no real injuries we haven’t accounted for, offering the possibility of consistent training allayed to the sunny disposition of a sweet summer child.

And, performance-wise, it really is rock bottom. No consistent training since 2017. 3 years of basically 90% of my time using a wheelchair (not known for building leg strength). I am the most feeble I have ever been, legs-wise, although I’ve managed to do a good job of keeping the core and upper body ticking over with weights (wheelchair use IS good for upper body).

Over the last few weeks I have tackled increasing my walking, rucking, deadlifts, turbo trainer cycling and outdoor cycling (these are two very different things when you have mobility/functional issues). A loose routine has developed:

Mornings- train
Afternoon- write/work/study
Evenings- reading/Netflix/resisting urge(s) to explore wine rack

Brief summaries of these activities for the curious:

Walking - I have a range up to about 5k now, but need to plan and pace it; it’s not doable on a whim. There are ongoing improvements to my prosthetics and associated paraphernalia and also my skill at selecting/managing them to changing situations (See blog on my first 5k). We have adopted the habit of combining my walking/rucking practice in nice places by volunteering beforehand at a local ParkRun each Saturday and then walking the course after. Everybody wins.

Rucking - an extension to my walking practice. Basically faster and more focussed and progressive walking, carrying a weighted rucksack. Good for heart and lungs while limiting impacts on joints and on prosthetics. A nice way of combining cardio/CV exercise with weights/strength and giving me a solid general health platform on which to base my cycling. It’s been going well but the ‘target’ speed is about 4mph average and you’re not allowed to jog. If you’ve ever tried it, that is quite a rapid march. I am currently languishing in the 2.5mph avg speed bracket. I know things will pick up, but as the world’s most impatient man it is frustrating.

Deadlifts - ongoing testing and refining technique. I used to be good at these, both technically and with weight - even with rubbishy feet. Problem we have now is spreading weight across whole foot is tricky with no foot control or sensation. Also riding bar up/near shins/thighs is problematic when you have prosthetics which jut out at knees. But I’ve got a hybrid RDL-type movement developing and hoping to get some expert advice soon to further improve things. As per ‘rock bottom’ joy, I’m just delighted to be doing the basic movement safely and effectively.

Cycling Indoors - now we’ve basically sorted out my #bikefit, the next obstacle to tackle is sweat. Repeated stops (sometimes as frequently as every 10 mins) to drain sweat as otherwise the leg twists in the prosthetic and the friction/sweat/height damages my skin. I’ve got some fancy sweat sleeve things to test from Ethnocare very recently, and will report back on those in due course. The good thing is my beloved Trek fits and is looking delicious, albeit with platform pedals for now. The mag pedals I have are being tested/practiced. In reality, I can’t fault them, it’s me and my newly rubbish foot control/technique with unclipping which is hindering things. I’m doing my best to build skill and confidence here, as I can’t ride platform pedals forever.

Cycling Outdoors - The Brompton electric G-Line of previous rhapsody is still superb. It has been brilliant balancing my personal physical efforts supported by the e-Assist function. It’s also just a lovely, fun, capable ride. It’s done 3hr training rides in supreme comfort. Over the coming weeks, as my fitness continues to progress, this bike will take on fewer training duties and much more commuting, leisure, transport, errand responsibilities. The Trek will return to the road for more specific powermeter-led training.

And so that’s what’s happening currently. My desire for basic functionality has mostly been achieved, so we can start introducing more cycling-specific training. And, as you know, that demands some appropriate goal-setting for me:

The Devon Air Ambulance Cycle Challenge is on Saturday 12th September, starting at the lush Winslade Park just outside Exeter. There are 30, 50, and 100-mile options. I will be doing the 30 to ensure I have sufficient mental resources pre-, inter- and post-ride to welcome you, loiter around the event village most of the day, and be a dazzling social butterfly charming all and sundry. I would love you to join us. If you raise £100 for the Devon Air Ambulance you even get a very snazzy DAAT cycling jersey (I will model it, as a preview, on my Instagram in the near future). Get on it.

And that’s the Rock Bottom post done. So I have a record, and so you can be nosey, here’s some stats to document where I am. I’ll return to this in a month or so for comparison:

RHR: 70bpm
HRV: 21
Weight: 62.8kg + 4.6kg prosthetics
Height: 190cm
Deadlifts (max functional, just as a guide): 3 x 10 @ 45kg
Estimated FTP (based on feel/power turbo testing): 140w
Estimated FTP w/KG: lets just go with 2w/kg (incl prosthetic weight, which I have to ride with!)

Thanks for reading,

T

Height Theft

Followers of my amputation journey will already know of my indignation that the prosthetists stole several inches from my height. From a biomechanical perspective it makes sense to introduce new bilateral amputees to prosthetics with reduced height, for lower centre of gravity and bolstering confidence and technique. It’s just they forgot to tell me. And it plays havoc when you’re trying to set up your bike fit for cycling - as you’re so out of proportion - and also, fundamentally, I want to return to my ‘original’ factory spec and walk with my proportional ‘natural’ limb length.

The height theft (probably not common enough to warrant a change to the offences recognised under Criminal law) was a little upsetting because I seem to spend an inordinate amount of my time arguing with various members of the medical establishment, and I really like my prosthetists and didn’t want to rile them by pushing for my missing inches. A begrudging compromise was met - they’d reintroduce my inches progressively over the coming months. Not fast enough for my liking, but faster than they had originally planned.

Debating Society Wins

But when we attended one of our planned appointments, they unexpectedly revealed they’d reconsidered and would now go ‘full whack’ (this, unsurprisingly, isn’t the exact term they used) and gift me my full height back. I like to think it was my spirited and masterful argumentation which led to this retreat but it’s more likely they were sick to death of my complaining and just wanted to get me out of the building (and their email inbox) ASAP. Whatevs. I’m 6ft 3 again.

Natural Athlete

Walking on prosthetics about 3” longer than previous was predictably a little bit different. Things were a bit twitchy, and balance was slightly reduced, but nothing serious - you have to remember I had 20-odd years of being that tall, so have ample practice/compensations. It felt like a very natural return, with some positives. Returning to ‘proportion’ meant rolling on the heel and ‘momentum’ were all improved. In actual fact, both mechanisms were quite new to me because my previous fused/rubbish ankle situation meant I never really got to do them, biomechanically speaking. I actually believe that while we still have some improvements we can make to my gait, the prosthetics are actually giving me better walking biomechanics than I’ve ever had before. Which was great, because about that time we were diving into enthusiastic training for the ‘Ouch to 5k’ plan and my looming first 5k event. And then…

Something wicked this way comes…

Wicked cool. Not wicked nefarious. An email: “You have a package scheduled for delivery from Brompton Bicycle Ltd”.

It seems a good time in the narrative to make clear that I am sponsored by Brompton and they gifted me this electric G-Line. But they have not asked for this post, I’m under no obligation to write it or say anything positive or negative about their products, and they have been enthusiastic in just wishing me well with my rehab and return to cycling. Nice people.

Delivery was scheduled, incredibly and eerily, for my birthday on 1st July. UPS being what it is, though, it was delayed and delivered the next day. I can tell you that two sleepless nights preceding a New Bike Day is quite draining. (NBD excitement never wears off. No matter how many bicycles or years you accumulate.)

Staniford and Brompton sitting in a tree…

Spill the tea, no cap (I am so down with the kids) I’m a massive Brompton fanboi, and longtime user. I have unhealthy levels of appreciation for the word ‘Bromptonaut’. I bought my first one (paid full price which, for those who know me, is about as rare as phoenix eggs) waaaay back in 2015 or 2016. An S6R, which denotes a flatbar model with 6 gears, rack, ‘guards and dynamo lighting, in British Racing Green. I still have it and until recently it was used almost daily.
My slavish social media fanboi-ing back then did not go unnoticed by the Powers That Be and they invited me to the Brompton World Championships that year, which I promptly won. It was a devastating demonstration of absolute physical supremacy; an annihilation of the competition. Mainly because there wasn’t any. As far as we know, I was the only para-cyclist racing that year, so defacto WC. A win’s a win, as they say…

Functional. Flexible. Fun.

Anyway. In my pre-amputation days I still had, quite obviously, some serious mobility issues. For over a decade, my Brompton went a helluva long way in helping me to overcome or manage them. As many disabled people will attest, cycling is easier than walking. So my Brompton got me really close to my destination (minimising the need for any walking), with the mudguards and dynamo lights handling any weather or time of day, and I could fold it down and take it into meetings/courses/shops with ease. And it’s a walking/rolling crutch when folded, with the saddle still raised. And a chair when I needed one. It’s not an exaggeration to say I enjoyed a significantly better quality of life with my ailing legs/feet because I had the Brompton to help, so I’m a lifelong devotee.

Are Friends Electric… ?

And then I started thinking about post-amputation lifestyle, transport, running errands, etc. My beloved Brompton was obviously going to feature. But I had concerns about my new legs. I live in rural Devon. It is hilly. Roads are rough. There were risks that amputation and prosthetics were not going to be a complete success, in my unique case. My Brompton has just 6 gears and would be laden down with clothing/luggage for any commuting. Then I saw the G-Line. And then I saw the electric G-Line.

The Most Versatile Bike In The World

It’s their tagline, but they’re not wrong. Take all the versatility of the original Brompton. Bang on some larger 20” wheels and robust tyres, and a rejigged geometry, so it will ride over more surfaces efficiently. Swap out the stem to a standard 31.8 clamp for more handlebar choice. And put an industry-leading e-assist motor in it to smooth out any terrain or environmental concerns. Job’s a good ‘un.

As a dyed-in-the-wool roadie I’m not inclined to thrashing about in the woods. My handling skills could best be described by very optimistic observers as ‘sub-par’. My dream off-road circuit is around a football field. In the dry, ideally. But I noticed the chunkier wheels would be ideal for rough Devon roads and reducing jarring vibrations to my recovering residual limbs. And the electric motor would mean I could progressively increase/decrease how much pedalling force I had to put through those limbs and over time adopt a kind of DIY rehab programme for rebuilding my leg muscles and comfort. And so I thought I’d pop them an email.

Only they beat me to it. This is why you pay good people to handle the Social Media in your marketing team. They were already following my ‘amputation journey’ and had already connected the same dots I had. They sent me a DM, we exchanged some longer emails, and a plan was hatched.

What Baby Steps?

Perhaps one of the most convincing litmus tests of good design is how a product can be used intuitively, with no instructions or adaptation period. The original Brompton is already an enduring engineering marvel, so my new G-line with the same fold and main touch points performed equally as well. I’m pleased to say that the e-assist function works just as intuitively. You pedal as normal, it kicks in at just the right amount. You vary your pedalling, it responds collaboratively. You stop, it stops. It’s practically a fit-and-forget solution, but you have the fallback of still being able to add in or reduce the e-assist if you want/need to. Which is how I managed 16 miles on my first proper ride. And 35 miles (3hrs) on my second.

Yes, I still have significant bunching up of the prosthetic sleeve material behind my knee still, which affects my pedalling and is causing wounds on the back of my leg. And the sweating issue, extensively covered in the last blog, means I need to stop cycling every half an hour and sort it out. But these are prosthetic issues, not bike issues. And we’re working on solutions for them. The Brompton, though, has no issues to be worked out. It’s awesome as it is. Definitely check one out and see if it might integrate with and enhance your own quality of life.

Pimp My Ride

I told a small white lie, above. There is one spec change I’ve made to the Brompton. I am a bike tart. I am shallow and superficial and, for the life of me, just cannot accept the visual impact of riser bars, and I also much prefer a slightly lower front end, for weight distribution and handling. So I’ve swapped the originals for some flatter Bontrager MTB bars which have almost identical up and back sweep, but only 0.5cm rise against the original Brompton’s 7cm, and I just cut them down from 75cm wide to the original Brompton bar width of 65cm. I say “I cut them” but I am the self-confessed World’s Worst Bike Mechanic (20+ years unbeaten) so my friend Denes at the superb Bike Sanctuary did all this for me with his usual speedy professionalism.

I also fitted a bottle cage (actually, one of maybe 2 bike mechanic tasks I can be trusted with. The other is pumping up tyres) to the very nicely-positioned new bottle bosses on the stem. And I fitted a name sticker to the toptube. Sadly I can’t share a picture of the finished machine because “words-only blog”, remember? You’ll have to go and look at the pics on my Instagram (and follow me, while you’re there, hey?)

On The Horizon

So, first rides back on the bike done. And my fledgling 5k running career is now over, so I can prioritise cycling training and progress. There’s a tremendous amount still to do: I have position changes to make, we need solutions/management for the sweating and the knee bunching issue. I need extensive hours of aerobic base building in the saddle. I’ve got to sort out (with the bike fit) using clipless pedals again (with the very nice MagPed pedals I mentioned in this post on Instagram). So… months and months of work. But we have a good starting point.

Thanks for reading.

The Best Laid Plans…

Saturday just gone (11 July 2026), I completed my first/last?/target 5k at the Exeter Riverside Park Run - which was the culmination of my ambitious/reckless ‘Ouch to 5k’ personal training plan. Regular readers will need no introduction but, in a nutshell, I’m one of those irritating creatures who thrive on goal-setting so set myself a 9-week target starting from when I got my prosthetic legs to doing a 5k. Note, this is ‘doing a 5k’, not running one. The good people of ParkRun are extremely welcoming of walkers, which I took full advantage of in this ParkShuffle.

Completing the 5k was a tremendous weight off my mind for a number of reasons. When I enthusiastically set the target, I didn’t know the event would fall in the middle of our third heatwave of the summer. This is problematic for prosthetics-users, in ways I will detail shortly. Secondly, I didn’t foresee how my truncated 9 weeks of training would actually turn out to be no more than 4 weeks of consistent training, due to injuries sustained on an ill-advised gravel sortie, and the aforementioned 2 heatwaves we endured. So, prep was sub-optimal, shall we say.

The Sweat Situation

Alright, so it was hot, yeah? We get it. It’s hot for everyone, Tom. Stop whingeing. Get on with it. Probably true, but a bit of prosthetic context.

You don’t want sweat in a prosthetic. The prosthetic may slide/move/twist, causing damage, and may even come off. Stewing in a sweaty mess for prolonged periods may destabilise skin/tissues, risking damage. And the heat itself, with no respite, can cause residual limbs to swell, risking further damage to the tissues themselves and also from a swollen limb being jammed in a non-expanding socket. So… world of no.

I grew up mostly in hot countries- Cyprus and Kuwait. I have minimal body fat. I thrive in hot weather, and always have done. I am borderline lizard. So it was a great shock to discover, post-amputations, I have lost this superpower and for the first time in my life I am now reduced to a quivering albino wreck, haunting my darkened living room under the watchful yet soothing glare of an industrial fan.

Basically, when I cut off my lower legs, I effectively removed 10-15% of my surface area. Useful, when trying to sweat/dissipate body heat. 10 is a big chunk.
Additionally, a further 20% of my surface area (my remaining legs, from shin to upper thigh) are now enmeshed in several layers of thick silicone-based wetsuit-like material for shock absorption and retention. These materials do not breathe, and they also retain heat, turning my thighs into furnaces, effectively.
And if that is not enough, I’m also putting out a lot more body heat - Below Knee prosthetic users expend about 15-40% more energy when walking than their able-bodied counterparts. That’s for one prosthetic. I have 2. And I think it’s reasonable to assume that with core/stabilisation efforts, the sum is greater than its parts. So 40-100% more effort.
Combined, these effects are significant - risking heatshock to my poor residual stumps, sweat rash, tissue deterioration, etc etc.

I was not looking forward to the heat.

Heat Acclimation Training

Being the plucky can-do camper I am, we set about getting some practice in. I’m hoping most of you are vaguely aware that heat tolerance and performance under heat are skills which can be trained - you’ve no doubt seen the video montages of athletes training in clinical settings, or in extra clothing, sweating buckets. Well, there’s a limit to what we can do accurately outside of any pro setup, also with no funding, but we kept an eye on weather forecast and timed our walking ‘training’ (mostly at Haldon or down on the Quay where the 5k would be taking place), so we could get Trevor and Roger used to working in the heat at ‘stretch’ rather than ‘snap’ heats. Unpleasant, but I think successful. Sweat rates seemed largely unchanged, anecdotally, but seemed to kick in at increasingly higher atmospheric temperatures (translation: can walk in slightly warmer temps before sweat becomes an issue).

Pit-Stop Princess

So the sweat was going to be a physiological inevitability. What could we do to minimise the deleterious effects and allow me to keep shuffling/trundling the full distance? Pit-stops to drain the sweat, dry off Trevor and Roger, evaluate any damage, and decide whether to continue or call it a day. We practiced the pit-stop procedure (this is all getting a bit ridiculously F1) and Alice walked the 5k with me, pushing the wheelchair for pit-stop sitting and carrying of antibacterial wipes, flannels, towels, and fresh prosthetic socket liners. Working off the sort of pace we’ve been doing in ‘training’ we expected the 5k to come close under 2hrs, including stops. So realistically looking at 2-3 stops. Who knew there would be so much faff?

Unexplored Avenues

There’s a limit to how much time, effort, and headspace you can spend on any given problem. The easiest/biggest wins, to my mind, are those listed above. There are other (generally pricier/riskier) things we could’ve done to help manage the sweat situation.
There are numerous alternative sleeves and suspension sleeves on the market for ‘active lifestyles’ which boast some combination of better wicking, temperature regulation, etc. But often at ~£200 each, and needing two of them, it’s an expense I’m unable/unwilling to explore, and happy to see what we could do with my very decent ‘everyday’ NHS offerings.
There are also very high strength (and even prescription-only version) anti-perspirant creams, sprays, roll-ons which effectively cut off the sweating. So it doesn’t even happen in areas where the substance is applied. I am sure these products are safe and very rigorously tested, but I am wary about introducing a chemical to my body which prohibits a natural (and quite important) bodily process. I’d rather sweat and manage it in some way, than chemically and completely aborting the sweating. To me, I find that a bit philosophically unsettling and would rather avoid unless unavoidable. So I’ve got one such product (£15, not too bad) and might try a small test, but didn’t need to do so for this particular event.

Headquartering

The day dawned, bright and ominously warm. Forecast 25 deg C at 0900 start, climbing to 28/29 deg C by my 11am predicted finish. Our homegrown testing showed sweat becomes an increasing issue above about 20 deg C. Oh dear.
We found the event start (I don’t want to say Race Start or Race HQ because for so many people it is not a race but a wonderful, welcoming inclusive opportunity to stretch your legs and embrace using your body) and met some of the volunteers delivering the event.
ParkRuns are almost 100% volunteer-led and volunteer-supported.
I need to make that absolutely clear because every single person we spoke to was genuine, enthusiastic, supportive and could not have been more positive. They freely gave up their Saturday morning (and often a great many of their Saturdays), for no recompense, so other people could go and have a good time. Champions all.

I was astonished as more and more people began to arrive before the start. I had, completely naively, assumed there would be a few handfuls of participants, maybe 60-80. Turned out to be 380. Despite all the discouraging effects of the heatwave. The week before, they had just over 500. I couldn’t, and still can’t, get my head round such crushingly well-supported community activity. This isn’t a one-off event, with well-funded specific advertising/marketing. This is just ‘usual’. Routine figures. Every Saturday. Year round (subject to some changes due to inclement weather). Also, this is one event in Exeter. There are 4 other Park Runs within about 7 miles of the wider Exeter locale. Incredible. Anyhow…

I had spoken, via email, with the volunteer event organiser who had very kindly connected me with the volunteer who would be ‘tail walker’ for the day. Because I would be walking, very slowly and with questionable completion success, I wanted to be Tail-End Charlie - and Rob very kindly offered to be the organisation’s human resource to support that aim. He also wrote a very nice LinkedIn post on the experience, so do show him some love. And so we began…

Strategic Shading

I don’t think there is huge value in a minutely-detailed blow-by-blow account of the actual walk, and neither does your wordcount tolerance. It was hot. Things went to plan. We kept to a steady pace. We had our first sweat pit-stop at 3k, and again at 4k (and again after we’d crossed the 5k finishline).

Things which really worked in my/our favour: the grassy sections of the route were more grassy than I’d been led to believe (foolishly did not do a ‘course recce’… schoolboy error). However, while they were grassy, they were also quite stable underfoot and consistent in surface so while some care was needed, not ambling along willy-nilly on my unsteady pins, I didn’t need to apply a hawk-like focus and these extended sections were a lot more forgiving than the tarmac sections for shock absorption. Trevor and Roger thank you.
Secondly, shade opportunities were fairly regular. And heavily shaded bits were conveniently where we ended up doing our pitstops. Shade is always cooler than exposed, but whether through some fluke of topography or divine breeze, our pitstop locations were not just a bit but massively cooler. So cool it felt almost chilled. And Trevor and Roger were delighted because they actually got to cool down, rejuvenating and restoring the clock on the walking time before they’d need another sweatstop.

When we began the walk, I planned to do ‘as much as possible before the stumps got to such a point that I was causing damage’. Because damage, as detailed in previous blogs, means a cessation of all prosthetic use, and most training, until they are fully healed. And I really don’t want that, considering the ego-massaging ambitious targets I have a habit of setting. Yet whether through good preparation, fortuitous breezes, or forgiving grass, each pitstop evaluation was positive, so we just kept going.

Loose stats for the numbers geeks (who may hyperventilate at such looseness):
Total time: 1hr 41
Total sweatstop time: 11 min
Total shuffling: 1hr 30
Total distance: 3 miles
Avg shuffle rate: 30 min/mile

Voluntary Role Modelling

Starting, never mind completing, this 5k would not have been possible without the selfless support and commitment of many volunteers. I do not have all your names, as you were overwhelming in both number and enthusiasm. If you are reading this, thank you.

And to wider readership: get onto the ParkRun website, browse the event(s) near you, and sign-up to either take part in one or volunteer at one. Or both. Ideally both. It’s an incredible community scheme and very special and you will not regret being involved in one, or several, or many. This section has been highlighted to convey urgent seriousness. Quick, quick, go. Now.

My own illustrious running career (*snicker*) has unfortunately probably come to a close, as I would like to spend some time re-focussing on my cycling training (unfinished business etc etc), but this event and its volunteers made a real impact on us and I want to continue to be involved and help repay some of that goodness. So, while Alice is still in the throes of a pernicious running habit, we’ve agreed she can tackle local events as a runner, and I will tackle them as volunteer.
Due to aforementioned goal-setting obsession and coveting of ‘full set’ collections, we hope to hit ALL the local events to us, at least once: Exeter Riverside of course, then Cranbrook Country Park, Greendale Farmshop, Killerton Estate, and Haldon Forest. We may even extend explorations to Exmouth and the (whisper it quietly) planned future route at Crediton.

Coming to a humanned course corner near you. Maybe we’ll see some of you out there.

Aftermath

Trevor and Roger were a little beaten-up, and showed some small signs of heat stress, but really quite superficial. In the days following, they’ve been good and we’re almost back to 100%. This is much more than I hoped for. Especially in light of the fact that during the event I realised this 5k was the longest I’ve walked in a single session/day since I did the Black Mountains Challenge 24 years ago. When I was 12. If that’s not an advertisement for the quality of life and mobility improvements offered (in some cases) by amputations and prosthetics, I don’t know what is.

Thank you for reading.

So I’m strongly considering banning pictures from here. It’s going to screw the meagre SEO cachet I’ve built, and probably lose me a few subscribers and regular readers who (for enigmatic reasons beyond understanding refuse to just click subscribe), but it will be a return to principle, a glittering beacon of wordiness in a sea of predominately picture and video-based content. It will load faster on your devices, encourage more reading, stimulate imaginations, and also save me time. When I started this blog it was a wordy 45-60 min tapping per issue. It is now a 3-4hr search and selection of images off my IG, uploading, moving about, writing words around the images, scowling at the screen, staring out the window, sighing, wondering how I’ve become a photographer/videographer/documentarian and not a writer.

I just think… would you rather see a pic (horrific amateur photographer, iPhone camera, similar images abound globally) of me walking in a forest… or read two paragraphs I have written describing the forest, its sights and sounds and smells and what it means to me (criticize the writing, perhaps, but can’t deny the individuality), thereby stimulating imaginations and, I hope, satisfaction beyond the doom-scrolling you would otherwise have done? Which is better for your health? Which is better for your escapism/entertainment? Which is better for my writing skills? I’ve sold this to myself, haven’t I? I favour the quality of the consumption rather than the quantity of consumers.

So, I’d value hearing your opinion on this (DMs or comments on social, or email me tom@tomstaniford.com) but I think we’ll try this. My instagram account will continue exactly as normal, if you want your photo fix. Here we are words only. Starting next time.

These Legs Are Made For Walking

Walking practice with my prosthetic legs continued to go very well. Comfort, distance, speed and wear time all increasing. The improvements are not linear, there are small changes and adjustments required on a day-by-day basis, and even on an inter-day basis.
For example, typically your residual limb will reduce in size over the course of the day as a result of pressures, circulation, and temperature changes. This means that putting a medical sock over the limb to ‘pad him out’ may be needed in the afternoon in order to maintain snug fit within the prosthetic socket. It’s basically a game of constant vigilance for damage and fatigue, in which the goalposts unhelpfully relocate themselves a little from time to time. It can be a frustrating exercise, managing such unstable conditions, but the reward is that you, more often than not, get to walk up to a counter and order at eye-level. Or walk to the car without bringing a wheelchair along ‘for later’.
Unfortunately, many observers are unaware of these challenges. There is a tendency to assume if you have prosthetic legs and are using them, then you use them all the time, and the mobility problem is solved. The reality is that they are mobility/disability ‘aids’ - just as crutches, a wheelchair, glasses, hearing aids, CI, and so on are. When you wear glasses they don’t magically deliver 100% vision in all situations. Likewise with any of the aids above, they give a helping hand for certain functions in certain situations which are welcome. They are not a panacea.

Attending Exeter Mobility Centre for some adjustments to my prosthetic legs. This picture also the first documented evidence of me standing. And, I suppose, striking a power pose.

Greater comfort and skill on ‘me pins’ also means on non-challenging terrain I get to do ‘casual walking’ (a previously unimagined activity) - here we are casually walking to Calvo Loco, our favourite tapas bar on Magdalen Rd. Panama and brogues. Devastating combo.

And my travels even took me further afield… visiting the super Topsham Brewery down on the Quay, who very kindly created a Limited Edition beer for the Exeter UNESCO City of Literature BookMarket. Confidence on my legs was so great that I volunteered to perform Quality Control testing on samples of aforesaid beverage Passed with flying colours. The beer, that is. Although I suppose I did ok too.

The Sartorial Cyclist

Beyond walking, I think most people who know me or have followed my internet presence over the years know that men’s clothing, tailoring, and cycling wear are a preoccupation. I didn’t coin the phrase ‘go slow, look pro’ but it speaks to me on a primal level. I’ve written a previous blog about my recent visit to NoPinz for getting some cycling kit fitted. I am very proud to be sponsored by such a great British manufacturing success story, and ride for a team they also co-sponsor: Team Bottrill. Anyhow, kit arrived, immediate home photo shoot required.

(Pic credit © Alice Staniford 2026, because you know I’ll receive aggro otherwise)

I think we can all agree it’s pretty snazzy. Fits well. First time in 20 years of cycling that I’ve had sleeves which fit. Such a small thing. Such a big thing. Also, barrel chest looking more barrel than chest here, as I am spectacularly unfit/overweight after 3 years of wheelchair scooting and no proper CV. Working on this. Or will be, soon.

I’m wearing my trainers with platform pedals (above) as still unable to do a full pedalstroke, with prosthetics obstructing full knee flexion. Discussed previously here.

*obligatory canine attack pic*

It’s just my magnetic personality, right?

Bikefit aspirations have been further hampered by pedal choice. In the pic above you have no doubt identified by subzero cool Bontrager cycling shoes, and maybe even the Speedplay Zero pedals on the bike. I’ve been a Speedplay fan/user for 17 years now, and was even sponsored by them briefly, but sadly all good things come to an end. I have no ankles anymore. I have no ankle control. Clipping in, where a finetuning of angle, direction, balance and cant is needed, has become essentially impossible. Believe me, I’ve tried.

And so, the next stage of my cycling rebirth, necessitated a pedal change. I like/crave the safety/surety of clipless, but still want ease of access/disengagement. Enter MagPed. Fundamentally the same as other rear-retention clipless road pedals (Keo, Shimano SPD-SL, etc) but instead of mechanical retention, magnetic. Behold:

Ok, not the best video. Trying to film one-handed when the hand doesn’t work properly is not ideal. Christopher Nolan, your job is safe. But you get the idea. I went for the Road 2 Pedals as they seemed most appropriate for my intended use, and will report back on them once I’ve actually got the bike fitted to me. Initial thoughts are positive, however; they seem really robust and dependable. We shall see.

No Forest For The Wicked

One day people will truly appreciate my hilarious sub-headings. But, like all the greats, I go unappreciated in my own time.

My walking aspirations extend far beyond the quotidian pottering of the casual pedestrian. I intend to dabble in the hardcore world of ‘hiking’. And once I’ve reached dizzying distances and demonstrations of stamina, I will add weights to my rucksack and join the growing enthusiasts of rucking (aka yomping, tabbing, etc). But let’s not get ahead of ourselves.

Haldon Forest Park has for quite a few years now been a very special place for me. It’s 6-7 miles from home, a release, a retreat, and never fails to improve my mindset. The dogs love it, and as I’ve not really had functional legs for a while, we’ve been using the Trampers offered there as part of the superb Countryside Mobility scheme. If you have a health condition or are a bit unsteady on your pins for whatever reason, I strongly recommend you check them out.

It’s been one of the very best things about getting legs that I’ve now been able to explore the intro/family/beginner green trail for the first time on my own legs. One lap is 1.75miles off-road and that fits exactly with the top end of my current capabilities.

Squad goals. Pack goals. Goals. Wheelchair came with us as back-up in case of fatigue.

Haldon? Rivendell? Crouching Tiger? You decide.

An unexpected benefit of getting legs beyond ‘walking’ is ‘walking with dogs’. It’s unexpected because it seems like our two terriers, Brig and Badger, are delirious with joy that ‘Dad’ is now mobile. They love it when I come out with them in the wheelchair but there is some intangible unspoken subliminal additional signal for them about me ‘walking’ that they find just mind-blowingly satisfying. I’m not sure why, but they do.

This joy is especially apparent in Badger, the elder statesman of our nation household. He’s 13 now, with very bad eyesight and hearing (takes after his old man…), and sharply diminishing walking range and speed. With my burgeoning walking ability we are now perfectly matched on the trail. He stops for sniffs. I stop to avoid asphyxiation and catch my breath from the last exhausting walking interval. He’s always been my best friend (sentimental cringe) but now he’s also my best walking partner (even deeper cringe).

Injurious Gravel

It had to happen eventually. I’d just rather it didn’t happen so soon into my journey of walking progress. We did a medium-distance midweek walk in a new location, where the paths were gravelled (yay) but not compacted (boo). This meant, like walking on sand, the progress was strenuous and the surface was shifting under our feet with each step. It felt fine at the time (if extremely tiring) but later in the evening I realised some heavy bruising had occurred. Trevor, in particular, was not happy. Here he is, not looking happy.

Trevor and owner unhappy. Canine concerned. Coffee machine resplendent as usual.

So the last two weeks have been filled with concern, no prosthetic use, a GP visit, some precautionary antibiotics, some leg elevation, gentle massage, anti-inflammatories, wound dressings for small split in the skin following swelling, and general miserableness. I will skip the full record, but it hasn’t been fun.

I have really struggled. As a new amputee I have had new sensations, issues, timelines, and questions. But, more damaging than this ignorance has been that I got quite used to the simple joys of walking to the car, or walking to a counter in a shop, or to the toilet, or even just standing in the garden and breathing fresh air. With no support or pain or real physical compensations needed to do so. It was a brief and very satisfying awakening that felt like it was brutally ripped away in one day. You can’t wear prosthetics with any damage to the residual limb because it just compounds any issues. And so it was very much a cold turkey situation, after only a short high of what has been a very long time coming. Whinge. A very long two weeks.

Trevor is Risen

Healing occurred, as you would expect. There was a brief foray into some neurological damage and desensitization, and the removal of a worrying bit of bone growing in my wound (another story for another time), but we’re all on the mend now. I have worn my prosthetic for a 5-min test and comfort is returning. Which is great, because I have an appointment this Friday 19th with the prosthetist where we’ll tackle the long-awaited prosthetic adjustments (haircut?) to enable me to do a full pedalstroke on the bike again. Also, I’ve got walking training to do to raise my 2 mile range up to the 3 miles needed for the 5k Exeter Riverside ParkRun on Saturday 11th July. Exciting.

End of Season Objective

Something else that is really exciting: an end of season sportive on 12th September for the Devon Air Ambulance. This is their first ‘own’ cycling event and, while starting small this year, they have huge but very achievable ambitions for future iterations. I have a soft spot for the DAAT (the whole ‘saving my life’ thing is influential), evidenced by them being one of the recipients of last year’s #GoodbyeLegsRide charity campaign, so I was thrilled they’ve gone ‘all in’ on their own cycling event. I was also very proud to have been asked to help guide the event and make some suggestions and, naturally, I fully intend to ride it. Probably the middle distance 50-miles, provided legs and fitness are there.

Anyhow. If you’re looking for an end of season objective, or want to take advantage of our increasingly-customary Indian summers to enjoy 3 glorious routes (30, 50 and 100-mile) across beautiful Devon countryside, while raising vital funds for a critical emergency care charity… find out more here.

I hope to see you all in September.

Thanks for reading.

T

A lot of what is happening these days seems to have profound implications for my life, self identity, or future, and such weighty issues are sometimes difficult to articulate or present in a pithy entertaining blog suitable for general readership. And the truth is, I am desperate for your readership/understanding/praise, so figure one enjoyable blog every 6 weeks is better than a fortnightly serving of forgettable beige.

As such, this edition of the blog features a pleasing melange of subjects and mixed media which I hope you will find edifying. It’s the tail-end of a heatwave Bank Holiday weekend in the UK, so I hope reading it will slot perfectly into your inebriated post-BBQ entertainment schedules. It’s a bit lengthy, mind. My longest ever, but also one of my best.

The World’s First Sound Free Concert

That’s not hyperbole. It really was the world’s first such event, and something myself and colleagues at Outcome Path have been working on for months with Advanced Bionics, Phonak, and others. If you missed the social media chatter, the basic premise of the event is described by me (admittedly, a bit stiltingly… I was exhausted) in the first 20 seconds of the extremely watchable video below:

(Filmed, edited, post-prod by the fantastic Joe Norledge Films)

I’m fortunate to have the portfolio career of a wastrel Fractional CMO and Marketing Consultant, so it was both a privilege and a pleasure when my friend Ade asked if I would head up this project. It is exactly the work I want to be doing. Effective and innovative marketing with real world impact and impetus. It’s nice to have a World First on the LinkedIN CV now, too.

In the dizzying post-event haze, this vid and other media and testimonials are now doing the global Audiology and health/social care rounds, so we’ll see what happens next. There might be similar events in other cities worldwide, or training, or consultancy. Regardless, it was great work and a great team to work with.

It also meant I got to publicly unveil, for the first time, THE BROGUES.

(Pic Credit © 2026 Ade Webb - credit where it’s due)

The Arrival of Roger’s Leg - now properly Bilateral BKA

Sharp-eyed readers will note that I have two prosthetic legs in the pic above - suggesting a recent acquisition. This is true. I picked it up the day before we went to London for the Sound Free Concert. This timing was… suboptimal. Nerves and fatigue already at a fever pitch for a World First event 200 miles away… collecting the mobility aid you’ve been waiting the best part of 2 years for which is fundamental to your lifestyle moving forward, the day before. I could perhaps have phrased that mouthful a bit better.

The timing was nobody’s fault - except perhaps my own, for not pragmatically putting off prosthetic collection until a week later once the concert had been done. But when you’ve been waiting so long… yeah. In any case, getting used to the leg and learning how to walk takes a significant amount of time, so I was just wearing it during the concert for cosmetic purposes. And by that, I mean “so I can show off the brogues I’ve wanted since I was about 9 years old”. See previous blog re my lifelong footwear challenges.

Learning How To Walk Again

Having a Below-Knee Amputation (BKA) is a significant benefit, compared to an Above-Knee (AKA), for what I hope are fairly obvious walking biomechanics. That does not, in any way, mean that it is ‘easy’. But you have a knee you can control, so a big headstart with just the lower leg and problematic ankle joint to manage.

We will gloss over the whole fitting, socket comfort, discomfort, weight-bearing pain and so on issues of getting a new prosthetic (much of it covered in previous blogs) and leap right to one small step for man, one giant leap f-… Every journey starts with a single step. Stepping into the future. One step beyond. Etc. Here were my first ones:

My commitment to walking is matched only by my commitment to colour coordination and sponsor representation.

After these first tentative forays into pedestrianism, we were whisked away to London for the SFC, and the leg was demoted to a useful wheelchair prop for wearing shoes, but once recovering back home in Devon I was able to continue my physio exercises and walking practice. Here’s a clip of some rapidly-improving hallway reps:

And, after some further practice and course correction, I attempted my first crutchless ambulation. Not the prettiest sight, unkind individuals have even suggested drunken sailor leanings, but mostly safe and mostly serviceable:

And then, inevitably, outside was tackled. And weather. And gradients. And rough ground. This clip has a bit of it all, and was taken about 10 days in:

It’s ok, I wasn’t having a mental episode there. I was just waving one crutch to show that it wasn’t really needed at that point, and could probably switch to just a walking stick. Which I did, a few days later.

A Tasteful Interlude - Trevor’s Birthday

A few days later turned out to be 21st May 2026, which is the 1 year anniversary of my first leg amputation and the ‘birth’ of Trevor. Alice is much better at keeping track of these things than I am, and very kindly baked a cake to celebrate - coffee and walnut, because we have certain standards in this house.

(Giant cake pic © 2026 Alice Staniford - because she will also hurt me if I don’t credit)

A lot can happen in a year. A lot has happened in a year. As mentioned in the introduction a blog is, perhaps, not the best way of documenting that or sharing the many experiences and thoughts about those experiences which occur. Trevor’s bday is a good example of that. I don’t know where to begin. The whole amputation journey alongside the #GoodbyeLegsRide and then work changes, and #SoundFreeConcert and personal growth, and… life. Where to begin. Think you’ll have to settle for a cake pic and your own empathetic imaginations.

Oh God not another performance target…

You might have noticed that I like a challenge. I am also relentlessly, hopelessly, goal-driven. Even when I'm actively trying not to be, because it’s unhealthy at times, I have a tendency to fall into bad habits. I must read this book faster than anyone. I will ‘win’ at recovery- go to bed earliest, or meditate the longest. It’s a sickness, and it’s a bit pathetic, really. I am getting better at it, but the whole amputation and rehab and prosthetic thing has regrettably unleashed a seductive slew of ‘new challenges’ and ‘first double amputee to…’s and opportunities to self-flagellate myself into new PRs and PBs because, let’s face it, everything is new currently. I have no amputee track record yet. Walking to the café sets a new distance PB for me. I walked to the end of my drive in ‘record time’.

And so, Trevor’s bday came. And the 2-week anniversary of getting ‘both’ prosthetics and beginning to walk. And I found myself rather stupidly enamoured by the notion of a personal challenge to walk 2k. And here we are:

It wasn’t pleasant, reader. You can probably tell, by the fact it took 90 mins to walk 2k. A colossal 0.8mph average. Including stops, of which there were many, helpfully facilitated by Alice walking alongside with my wheelchair. But, job done. It was very boring. Very exhausting. Very painful (thankfully, all lower back pain due to crap technique, lordosis, anterior pelvic tilt) and Trevor, Roger, and prosthetics were absolutely fine if a little bit sweaty.

(Zoa cap, Zoa shorts, merino t-shirt - Albion Cycling. Crutches - NHS. Gazelle trainers - Adidas. Sunglasses, questionable facial hair, stoic grimace - model’s own.)

It is not enough to walk 2k. One must walk 2k in stylish sponsor clothing, with long-suffering wifelet as volunteer photographer and backup wheelchair pusher.

Anyhow, it took a day or two to recover, no lasting damage. Except there was damage. An unfortunate seed had been planted and, like an insatiable junkie, I was homing in on my next bigger fix.

Ouch to 5k

UK readers will have heard of ‘Couch to 5k’, a popular NHS policy/programme/craze which seeks to support (with a 9-week training programme) people wishing to go from sedentary to completing a 5k event. (ParkRuns being an absolutely perfect target) It’s a great programme, which I fully support. There’s even an app for it. Seriously, if you’re not already active (and even if you are, to be honest) check it out, and go do it.

But, me being me, I had to put my own whimsical wordplay into, er,… play. And also wheedle in an acknowledgement of my unique situation… and so ‘Ouch to 5k’ was born. I have given myself 9 weeks, from the day I got my legs, to completing a 5k. Note I have said ‘completing’ not ‘running’. One does not run, with standard prosthetics, as an amputee. One adopts a spirited shuffle and prays their limb(s) are well-supported and it doesn’t get too hot on the course. (Fancy carbon fibre running blades are something which, for the foreseeable, elude me on a financial basis).

So, got both legs locked and loaded on 8th May, 2 and a bit weeks ago. 9 weeks takes us to Friday 10th July. Rather conveniently, Saturday 11th July sees Exeter Riverside ParkRun 9am start. So there we go. Sorted.

(Monopolising the mobility aid market - © 2026 Alice Staniford, again)

This won’t be a charity challenge. I think people are probably still recovering their patience and wallets from last year’s #GoodbyeLegsRide and the tremendous £16,000 we raised for Devon Air Ambulance, Wheels for Wellbeing, Exeter UNESCO City of Literature, and the Devon and Exeter Institution.

I have no intention of becoming the Westcountry’s Bono or Bob Geldof and completely understand if, frankly, people are sick of the sight of me. I am, however, keen to try to nudge people towards the very practical and beneficial Couch to 5k program - or even towards embracing their own personal projects and pathways to better health. Get started now. There is no tomorrow.

If you want to come and join me on 11th July, by all means please do. But prepare yourself for what will be the slowest 3 mile walk you have ever done.

Living for the Lycra

Don’t get me wrong, walking and jogging and maybe even running one day are all very well and good. They’re fundamental to taking advantage of my new legs and ensuring my health and longevity. Ouch to 5k is a wonderful target to have, and maybe we can even encourage lots of people to take on their own healthy challenges.

But it is a side quest, reader:

(First time I’ve sat on a bicycle since the #GoodbyeLegsRide back on 27th April 2025)

I’m committed to building my general health and working towards walking/jogging becoming regular easy activities for me. Having been graced with the tremendous gift of bilateral BKA, I want to be as ‘fully functional’ as I can be. But unless we encounter some serious unexpected practical or biomechanical issues, my hobby and performance aspirations remain firmly directed towards two wheels. I’m supported by some wonderful people and brands (Trek Bikes, NoPinz, and Albion Cycling) who help me do so.

(Please don’t mention triathlon to me. I need to focus on summitting the heights of mediocrity in one sport first, before tackling three).

And so, 4 days after collecting Roger’s leg, I sneakily threw him over the familiar Emonda toptube to see what’s what on a bikefit basis. Needless to say, everything has changed. I’ve gone from size UK6 cycling shoes (actually size 3 and 5 in them though) to UK9. And my deteriorating hand is worse than it was. And I now have a belly. Which crushes my lungs. So some fit changes are needed.

Alarmingly, though, I needed quite a large reduction in saddle height. Bit confused by this, initially, as when the prosthetists asked me what height I would like to be with my snazzy new legs, I asked to remain my original 6ft 3”. And yet, here I am cutting 2 inches off my inner leg length at the minimum possible on my bike frame. Quick call to the prosthetist - they’ve stolen 3 inches from me!

So, walking with BKA prosthetics is hard. About 40% greater energy expenditure than ‘regular’ legs. Walking with 2 of them is exponentially harder. Often, with a ‘bilateral’ patient, prosthetists will start them on a slightly reduced height. Better for centre of gravity, balance, building confidence, developing technique, etc. The problem is that they forgot to tell me this. And, regretfully, they seem slightly reticent to give me back my stolen inches because of the challenges posed by the additional height. I can feel another TS vs medical establishment case coming up…

We have a face-to-face appointment with them this week. If all goes to plan I should be returned to previous lofty status, and can sort out getting my bike to fit. This may require some tweaks to the prosthetics but, as with so many of my physical adventures, we won’t know until we try. Watch this space.

Thank you for reading.

Speaking of shiny kit, and the focus of this entry, I mentioned before that this year I have the privilege and pleasure of riding for Team Bottrill Nopinz. I say ‘riding’ rather than ‘racing’ because I want to get my excuses in early. 10 months without any credible leg use, and several years without consistent health for structured endurance training - I would not back myself for setting the world of cycling competition alight.

But that’s ok. I’m a para-cyclist so, even at physical peak, I could not reasonably be expected to match the wattages/speeds of Elite able-bodied competitors. However such performance mismatch has given me a wisdom that I will now, in the spirit of benevolent munificence, divulge. Are you ready? This is powerful stuff.

It doesn’t matter how fast you are going. So long as you look fast.

You read that right. Don’t reject it reflexively. How many times have you seen the retired ex-pro sitting on the back of the group somehow looking like they’re the fastest there? Or seen the actual winner of a race somehow, in your mind, made less impressive by the fact he looks rubbish? (Sorry CF). It’s not so mich about winning, or even riding, but HOW you win or ride.

So don’t get yourself down or beat yourself up if your speed is not quite what you hoped for, or trained towards. You can still adopt the posture and wardrobe of a champion. Someone who makes going slow look… enviable. The Italians, in their infinite cycling wisdom, understand this intrinsically. Bella in sella. Beautiful in the saddle.

Now, my postural considerations have long been well-supported by Phil and Jules at Cyclefit and Phil Burt (and you should probably visit them in MCR or LDN to handle your own bikefits), so all that remains is my wardrobing. Enter Nopinz.

An eye-watering number of World Tour pro teams are using NoPinz products (often logos obscured or rebranded). There’s a reason for that - scarily aero. Scaero? Can I Trade Mark that? Naturally, any requirements to look fast are met because, the products are, er, actually fast. In my case it’s just a shame the engine cannot quite match such performance standards yet, but I’m working on that.

Beyond the B-Corp credentials, manufactured in UK, no minimums, exquisite taste in office dogs, just up the road in Barnstaple HQ that I’ve mentioned before, Nopinz also offer something I’ve not been able to try extensively before.

Fully custom fit. In the sense of ‘Choose item. Choose design. Custom fitted to you’. It may come as a surprise to you, to know that the sartorially-inclined individual whose blog you are reading about ‘looking fast’ has yet to fully embrace custom fit cycling clothing, but it is true. I have a weird body. It’s a gift. And I’ve been lucky to get away with standard sizes (with some testing and forethought) for most things in the past. But the perfect sleeve, for my hyperskinny upper arms, has thus far eluded me. This is problematic for both aero and for ‘looking fast’, and I’m pleased to say that time may now be at an end.

As an aside, Nopinz, in addition to custom fit, also offer 3D scans for their top top skinsuits, and even a priority ordering service when your speed needs are such that you even need it designed and delivered fast.

And so on Wednesday we went to Nopinz HQ for a fitting to see what ‘stock’ specs fitted, and what would need tailoring. It’s a really nice setup. They also have good coffee. Obviously this matters.

They also have superb office dogs. Rodney and his intended future love interest Cassandra. They also had Albert, may he RIP, so there’s a definite naming theme emerging there…

Nopinz. A company so devoted to aero that even kisses from the office dog must be accepted in a semi-aero position.

Extensive exploration of the burgeoning range with Tori, below.

Our testing revealed that most things actually fitted very well in standard sizes- just the sleeves were flappy. So once my kit has been printed and made up I’ll go back for tailoring of all the sleeves. Really exciting.

One final benefit of being sponsored by a clothing company, in addition to such tailoring for small changes, is variations to design itself. Many years ago, way back in the mists of time, I won a National Championship and got to wear the aquafresh bands for a year. That also meant that for every year thereafter, indeed until I shuffle from this mortal coil, I get to wear the bands on my sleeves as a former champ. And this is what Oscar has designed those bands to look like on my 2026 kit. Swanky, eh

Coming soon to a mid-ride café near you!

Huge thanks to Blake, Tori, Oscar, all at Nopinz, and Matt and Kate Bottrill for the team slot.

Roger, Roger

He has at last turned a corner with his healing. After a period of stagnation where not a lot seemed to be happening, he is at last starting to dry up and scab over. This is important as the last stage of healing- the internal ‘stuff’ seems to have occurred, and we just want the top layer of skin to seal the deal.

I’ve been wallowing for at least the last month about the glacial progress to get here but, in reality, it’s only my perception. We knew prior to the ops that my wound healing is slow, and there would be complications with the final stage due to the lack of subcutaneous fat. It’s been 3 months since Roger arrived. To me that seems like an intolerable delay, with the usual being perhaps 2-2.5months. I am wrong. He is right on schedule. It’s just I don’t like the schedule. Get over yourself, Tom.

I’m not going to share a pic. It’s still a bit NSFW and to be honest I don’t think it really adds anything to the narrative. You’ve all seen nasty grazes/cuts before. At current rates of healing, I suspect he will be ‘covered over’ sufficiently for measuring/scanning of prosthetic liner and socket in early February. With a bit of luck this might mean his prosthetic leg arrives at very very tail-end of February. Then the real fun begins…

Skipping Leg Day

On the subject of prosthetic legs, I have been indulging in some fag packet maths. I weighed Trevor’s leg- a svelte 2.4kg, with all his ‘parts’ and a moderately heavy trainer. See incredible photography below:

Why am I weighing him? Because I’m a nerd. And beyond idle curiosity, I need to know weights so I can plot my vastly inflated w/kg cycling potential for ego’s sake. More on that a bit down the page.

So, two legs… 4.8kg. With some super lightweight cycling slippers and some tweaks, that’s 4.5kg all in.

When I was last weighed, I was a rather portly (for me, anyway) 64.7kg, with one leg removed. I know prior to this, wholesome as God intended, I was about 68-69kg. (Cut me some slack. I’ve been sat in a wheelchair for 8 months doing nothing). So original legs seem to weigh about 4kg each. Take one more off my single-leg weihht of 64.7 and I should be 60-61kg. With 2 prosthetics in my lardy untrained state, that’s 64-65kg ish. Cut 3-4kg by being fitter, and a featherweight 60-61kg is doable as a final racing weight with prosthetics. To compare, Sir Wiggo shares my 6ft 3” height and was, at TdF peak, about 68kg if rumours are to be believed. So I have some space to play with for gaining muscle (much-needed). Why am I bothering with this hypothetical number-crunching?

Don’t call it a comeback

Biggest issue holding back my previous life as a racing cyclist? Feet. They limited how hard I could push on the pedals (for training and racing), and limited my recovery (never fully relaxing, and rarely riding on damaged feet). I don’t have them anymore. Yes, I will exchange foot pain for a new type of prosthetic pain, it’s not a complete get-out-of-jail card, but I’m desperately keen to see what pedalling with prosthetics is like and what it might mean for the unfinished business I feel I have on two wheels.

I’ve tried to stage this ‘comeback’ at least 5 or 6 times previously - each time ruined by the demotivating and injurious effects of a body which couldn’t handle consistency. No consistency, no progress. But I’ve removed one of the main disruptors to consistency now.

Nothing worth doing is easy. This will take time. Not only because I’m the only person in the world with my various intersectional medical maladies, so some of my progress is experimental, but also because I have about a decade of not sticking to any structured training, and 8 months doing almost no exercise at all. I have to rebuild from the ground up - with basic things like standing and walking before we go anywhere near a bicycle. So 2026 is about that. Standing, walking, Nordic walking, rucking, strength & conditioning in the gym. Rebuilding the body. Some cycling will take place but if I skip this foundational fitness priority phase I’m going to be sorely limited on the cycling performance front later on. You’ve seen the pyramid graphics. You don’t need a PhD in exercise physiology to know it makes sense.

Great Athletes Ride Trek

So, the loose plan is to spend 2026 learning how to use my body again and getting cycling so that, if all goes well, I can deliver some reasonable performances in 2027. I’m ecstatic that Trek want to come along on this journey.

People who have followed my career, such as it is, know my relationship with Trek goes back a loooong way. They first sponsored me from the start of 2013. and have supported me, in one way or another, since then. That’s 13 years. In sports marketing terms that is an astonishingly long time. But then, I’ve always pursued long-term mutually beneficial partnerships. I have stayed with various sponsors through the competition years, and some even through the wilderness years. It’s really satisfying, not to mention cool, that Trek will be here for this next stage. I’m grateful for their support and friendship, and looking forward to the coming adventures. A BIG thank you to Helen, Paulina, Jude, Jez and Veit.

Local Hero

My first ever races, back in the mists of maybe 2004, were the North Devon Wheelers 10-mile TT series. They had numerous good riders, but one of the especially ascendent was Blake Pond. He went on to found Nopinz, who have revolutionised race number fitment and various other aspects of aerodynamics. They’re also, wonderfully, still in N Devon and still proudly make all their stuff there, alongside being a B Corp and supporting a wide variety of local and national cycling organisations and projects. A real success story. Support them. Lovely cycling kit.

They make their own super-slippery aero kit (custom and off-the-rack) - you’ll have seen it on the shoulders of basically every decent TT racer out there, from CTT Bar up to the Tour de France - and they now make mine too. I’m really proud about this. They’re local. They’re ethical. They’re what I would have chosen to race in even if I wasn’t able to rely on their support and friendship and superb taste in canine companions.

#StayOutsideForLonger

Nopinz make sublime high-performance kit for cycle racing. But over the coming months much of my cycling will not be fast, and much of my time exercising outdoors will not even be on a bike. Enter Albion Cycling.

They’re a cycling clothing company, as the name would suggest. But while their kit is also high performance like Nopinz, it is devoted towards efforts of a thousand miles, not 10-mile TTs. They outfit a large swathe of the best Ultra cyclists in the world. That may mean me using all their outerwear for shuffling around on the family hiking trail at Haldon forest is a bit overkill, but at least I’ll be warm, dry, comfortable, and extremely stylish. You’ve probably seen me swanning around in it on IG over the last few years. I am privileged to have also had a teeny tiny hand in some of their inclusive design thinking, and they have some exciting stuff in the works.

Constructing The Pain Cave

Needless to say, I will have increasing amounts of saddle time planned. Because of the need to learn how to do this again with ‘new legs’, and the fact that those new legs don’t really play nice with rainwater and so on, a large part of those hours may need to take place on the turbo trainer. That will not be enjoyable.

I currently have a classic bog standard turbo which has been a wonderful aid for focussed training over the years. But short, 1-2hr occasional sessions. I don’t fancy having my brain dribble out my ear with regular 3 and 4hr rides on it.

There’s an opportunity here for a canny producer of electronic devices and Smart trainers (I’m looking at you Wahoo, Wattbike, Zwift, etc) who might like to give/loan me the necessary to make my training more comfortable/entertaining. And, if you’re reading this and you know someone at those companies, maybe do me a solid and give them a nudge? Thanks muchly.

British Cycling and Disability Classification

While I’m waiting for Roger to heal, and the start of any actual training, it seemed prudent to tackle the admin side of any racing aspirations. Make hay. For para-sport, that means Classification - essentially a physical screening so they can place you in a competition class where you will be competing on a hopefully level playing field with others of similar challenges. I have a long and dispiriting history with this process, but let’s save that for another day and just say that cutting my legs off inevitably necessitates an updated examination. British Cycling have been supportive and we are booked in for 7th February. I won’t have Roger’s leg then, but they won’t need it to see there’s a real leg missing and make the necessary evaluations. Then we’ll see what’s what.

Onwards.

So, things are ticking along and problematic eye and Roger are healing well. They’re basically bang on schedule but, as per, the schedule lacks sufficient alacrity IMHO and I am desperately bored. Matters are not helped by the fact that in the interests of speeding up healing I have very severely cut back on any alcohol appreciation.

The Grape and the Grain

The irony is not lost on me that, having done a pretty snazzy wine qualification recently, I am drinking the least I have in a long time. Or at least since the previous amputation. Not that I am an especially heavy drinker. Much like my coffee drinking, it’s quality over quantity, so at my very busiest I probably have a glass or two 3 evenings a week, tops. I’ve reduced that (temporarily) to 3 evenings spread over the last 6 weeks, so quite a dry period. I’m not missing it especially, but the fact is that I do enjoy the taste of wine and whisky and things I enjoy doing are currently in quite short supply, so those 3 evenings are quite special.

I Can See Clearly Now

The eye has made big progress since last update. It’s about 7 weeks since my lateral tarsorrhaphy surgery, and at last we have some movement. You may recall, a small Botox injection in my upper eyelid was meant to relax the muscles so the eyelid could cover my eye more and reduce dryness. Sadly, it just paralysed it, leaving me with a stuck eyelid, and an eye surface drier than the Kalahari which led to a nasty abscess/infection/what ‘ave ya. Lots of antibiotic, anti-inflammatory, and hydrating eyedrops later (18 a day- a new record), taping it shut at night-time to maintain moisture, and it’s all healed, swelling gone down, eyelid behaving almost normally. This is very good news because I have stopped taping, which is a faff and a bit painful when taking off, and because I should be able to use my contacts again soon.

Close Contact

Wearing contact lenses is slightly more beneficial, but also slightly more problematic, for me than it is for most people who wear contacts. Let me explain.

My genetic eye condition is kerataconus. TL;DR - my cornea changes shape over time and becomes more cone-shaped, basically ruining my eyesight. I’ve had surgery before (corneal cross-linking) which doesn’t improve things, but limits further deterioration. Problems arise when you are trying to use contacts, though, because fitting them is quite tricky with pointy eyeballs (!)
Firstly, my contacts lenses are rigid, unlike many contact lenses, and they cover much more of the eye than regular contacts do. You also, for reasons which I am not technical or ambitious enough to explain/understand, have to trap some of the contact lens fluid in the contact lens against your eye. This means you fit them by basically leaning right over so you’re looking directly at the floor, and press the contact lens (with the fluid in it) up onto the eye. So far so good?

Now, imagine that if you get it wrong, the rigid contact lenses scratches your eye up and it hurts. You also lose all the fluid in the contact lens as it tilts, so have to refill. Imagine you have really tight skin because of MDP, which isn’t ideal when you need all the eyeball space available for your larger-than-normal contacts. Oh, and you’ve got really long (and very attractive) eyelashes too, which can get caught under the contact requiring refitting. But it’s ok, because you can easily use the fingers of your other hand to help keep your eye open. Or you would if the wrist wasn’t fused and you hadn’t lost much of the function of that hand due to another, unrelated, medical issue. Needless to say, fitting contact lenses is not easy for me. Even with extensive practice and levels of patience it is uncharacteristic for me to display. So why do I bother?

Into Focus

1. WAAAAAY better focus than my glasses. It’s like 3D.

2. Better sight = less cognitive strain focussing on sight and lipreading = better hearing. This is not a joke or an exaggeration. It’s a crazy improvement.

3. Because I’m effectively sealing the surface of my eye with the contact lens full of fluid, no moisture issues. I don’t need to use hydrating drops as much, eye is much happier. Long term eye health is much improved. And they’re really comfortable and stay put all day with no issues.

4. Not sure why, but slightly less sensitivity to light. Because my corneas have been fused by the cross-linking surgery, my eyes do not adapt to bright light very well. Or at all. Hence me using hats and sunglasses all the time outside because if it’s sunny and I’m not wearing them, I’m effectively blind. Not an exaggeration. But when using my contacts my eyes seem slightly less sensitive to light than when using my glasses.

5. I get to wear my prodigious Oakley sunglasses collection, because the contacts provide the focus and the sunglasses provide the shade. Oakley do not make prescription sunglasses strong enough for my horrific astigmatism, so it’s glasses + additional sunglasses on top of glasses + hat + fingers crossed, or contacts + Oakleys. I know which I prefer. You can take the boy out of cycling, but you cannot take the cycling out of the boy. Which brings me to…

I have to do this ridiculous contact lens faff every time before I want to ride my bike (or drive). Or at least, I did, back when I had legs (whimsical reminiscence). I don’t feel comfortable/safe on the road with the level of focus provided by my glasses, and I am at huge risk if I go round a corner or the clouds part and it is sunny. My eyes cannot cope. I cannot see. Game over.
Hence the absolute insistence on contact lenses and sunglasses for cycling and driving. The problem is that fitting them is so difficult, taking 5-30 mins depending on my skill that day. If I can’t get them in, and it does happen sometimes, I don’t drive/cycle. Non-negotiable. I mention this because Roger’s leg is coming soon, and I hope to get back to cycling and driving in time, and this is one of the essential elements in doing both those activities. Speaking of Roger…

One Small Step…

Roger continues to dazzle. We have a double appointment on 12th December with physio and prosthetist to review Trevor’s leg, and also take some measurements/scans for Roger’s one if he is sufficiently healed. With a bit of luck we might get his liner and his leg before Xmas but, more likely, after the Xmas chaos. I will do a future blog explaining the various aspects of prosthetic fitting and equipment.

Regardless, this means I should have two (working) legs in January and will be diving into a life of physio, rehab, strengthening and practice. We begin with standing, then walking, then faster walking, gradients, surfaces, etc. And some strength and conditioning work. Because who doesn’t love lifting heavy things and putting them down again repetitively, while eating lots of steak?
I also have my eye on acquiring yet another hobby - Nordic Walking - terrific for CV fitness, terrific for posture (which I really need to pay attention to after decades of physical compensations), and terrific for the acquisition of additional carbon fibre (It’s a sickness…). From there, I’m thinking my general health could do well with some yomping/rucking/tabbing (choose applicable term depending on your preference for different branches of HM Armed Forces) to build even more general strength/fitness.

And then, of course... the bike.

But more on that, later.

Thanks for reading.
T

Superfluous sharpie arrow makes a comedic reappearance. Don’t all rush to see if I have an OF

Same but Different

It has been incredibly gratifying to get this last amputation done - it’s been a long haul from when amputations were first suggested back in January 2023. That original idea, and the potential journey following it, actually formed the first issue (and raison d’etre) of this blog. So, that was great. Even greater was the fact we got some bonus positives this time round:

• the nerve block they placed in my thigh was placed at the amputation site this time. Much more comfortable, because I could lie/sleep on my side without fear of damaging it

• for reasons unknown to me, they were happy to remove the urinary catheter after just a day, rather than the 3-4 days we waited post-surgery last time. Maybe as a repeat customer they could trust me to piss in a bottle? Who knows. Fact is, much less discomfort (I hate them, as previous blog indicates), less pain and recovery time after removal and a faster return to regular waterworks. You won’t appreciate how fundamental ‘urinating in privacy without pain’ is until you lack it.

• no drain at amputation site this time. Again, not sure why. It meant everything was a bit bloody and grisly for the first day or so, but once bleeding stopped and all cleaned up, no aggravation to the surrounding tissue or pesky removal to worry about.

• I had serious concerns that this leg would be ‘harder’ for amputation as I’ve always favoured my Right which had more muscle volume and strength. However, surgeons said there was even more ‘material’ on this side and it was an even easier standard Below-Knee Amputation procedure. Maybe because of the limitations to muscle size it compensated with better quality? Or more biomechanical compensations meant a stronger muscle? Again, who knows. It’s a massive bonus because despite medical concerns (see previous blogs on fighting the experts) both my legs have received basic BKA’s with no real complications.

So, quite a few unexpected benefits this time round. Less faff with tubes coming out of me, less aggravation from them, happier/faster healing and comfort. In addition to obviously having some familiarity with the procedure and recovery, it has meant that ‘Roger’s arrival has been blissfully calm and strangely stress-free - comparatively speaking. So much so that Trevor’s discharge record after 6 days was smashed by Roger’s 4 days. His comfort and recovery have continued apace such that I binned the ‘hard’ drugs of oxycodone and codeine after a week. We’re on Day 10 post-op now, and I’ve been on just paracetamol for the last few days with no issues. That’s a huge win.

Matchy-Matchy

Needless to say, Mr Tom Hardy and his surgical team did a superb job on the amputation(s) and also matching them for length. Aesthetic considerations aside, matchy-matchy limbs make balance and prosthetic use a lot easier.

Roger, on the left, showing the nerve block and also extra bloodiness through not using a drain this time round

Michelin Considerations

The NHS stay also permitted me to indulge in one of my favourite pastimes - ‘restaurant’ reviews of the food. After considerable personal research I have decided that I am pretty much an expert in this field now, having finessed a strategy that is devastatingly effective. What you want to do is think of the menu as a whole, not just as separate items. For instance… your lunchtime starter is the fairly nondescript lentil broth. Your lunchtime main is the humble chicken mayo sandwich. Innocuous decisions. And yet, in combination…. dipping your feeble sarnie in the lentils: a Michelin star is essentially imminent.
Likewise, your dinner desert of strawberry angel delight is, I think we all agree, already a delight. But when you use your ‘something for after’ selection of a slice of fruitcake as the spoon… yes, yes indeed you begin to gaze upon the countenance of gastronomic gods. This is my gift to the world. Don’t overlook it.

Would you believe me if I tell you my pic of a bowl of NHS custard and lemon sponge now has 77,500 views on my IG? Hilarious.

Post-op Biomechanics

Having double amputations is nice in some ways- I feel more balanced. I feel very compact- like a small japanese car. Predictably, rolling over in bed is problematic (especially while Roger heals and can’t really take any contact), and sitting up from a lying position is even more problematic because I’ve lost so much counterweight from that end. Other than that, though, it’s nice to be balanced and somehow ‘more equal’ than before- especially as my Left leg had significantly more biomechanical issues so always massively favoured the Right. Now I’m clean slate to build a more stable core and back with fewer compensations and imbalances.

Naturally, rebuilding is going to take very many months, but it’s interesting to see some of the almost-immediate changes. My left leg has significantly changed shape and tracking when I bend my knee. I suspect that all the tightness and compensations in the foot and lower leg were influencing the movement. Cut them off, and the joint reverts to more natural and efficient movement.
Similarly, hamstring flexibility is massively and immediately improved. I noticed the same thing when Trevor arrived too. Although as new amputees you are advised to stretch religiously to be able to maintain leg straightness for later prosthetics, the practice of stretching alone cannot account for the improvements I see. There’s an immediate 15-20 degree improvement at the knee, and maybe another 5 available with stretching practice over the following weeks. Huge. I think it's because my lower legs were so riddled with tightness and structural rigidity that it passed up the biomechanical chain and limited hamstring flexibility too. This is cool but also really comfortable - my legs feel looser than ever. Good for health and performance. Which is good as I have unfinished business.
I can also, seated, with legs forward, almost touch my toes. Or the toes of my prosthetic. That’s with the foot at 90 deg, not dorsiflexed back to me, and even with my t-rex arms short for my height. With the benefits of two balanced prosthetics, standing, and gravity, I reckon I’ll be touching my toes for the first time in my life. I’ll take that as a win.

Subject spotted in natural café environment

Dabbling with Hard Drugs

One thing I did not expect with double amputations is a fine-tuned appreciation for the differences between opium-derivatives. In my pharmacological odyssey so far, I’ve had (enjoyed?) Oramorph, oxycodone, codeine, and (possibly familiar to the cyclists among you as it was allegedly quite popular among certain pro riders a few years ago) tramadol. Quick aside: any pro knocking back the tramadol needs to stop pedalling, and not pop that pill. The thought of any kind of performance or mental acuity under that drug is absurd. It wiped me out. I stuck with the more familiar codeine variants.
Happily, as mentioned above, I am now ‘clean’. All joking aside, these drugs are insanely addictive so I’m always very keen to get off them ASAP. I’m an addictive or, shall we say ‘enthusiastic’ personality with regard to things I like (cycling, coffee, whisky, wine, the KLF, Kraftwerk and an obscene number of other things) and ‘heroin substitutes’ is not one such outlet I’m desperate to become attached to.

The Optics (TW pic of grisly non-closing eye below)

Unfortunately, all good stories must come to an end and all good news must inevitably encounter negatives. Roger has been doing great. My eyes have not.

You may remember I had a small eye op a week before the leg amputation, to stitch my upper and lower eyelids closer together and inject some Botox to help the eyelid relax. This is all to basically help with keeping my eyes moist and functioning (see previous blogs on keratoconus etc).
The surgery was a success. Unfortunately the botox seems to have been so effective that it has effectively paralysed my eyelid - which no longer shuts at all. This means massive dryness, and has led to no small pain and a potential infection. Cue emergency eye appt, prescription of 3 new antibiotic and hydrating eye drops numbering 14 drops a day, and another emergency appt after the weekend. It did not help that the key antibiotic was out of stock at the hospital and 5 other pharmacies (nationwide shortage) and we spent the afternoon finding it in our 6th.

I could do without this nonsense. Especially as, currently, my solution is to wake up every 2 hours in the night and apply some hydrating eyedrops to the non-closing eye. I need my sleep. Roger does too. So, we’ll see what they say on Monday. An unfortunate additional issue spoiling what has otherwise been a really productive healing period.

And, lo! We come to the end of another missive. I hope it hasn’t been too boring, following my whimsical brain utterings. As with previous editions, these are largely unstructured stream-of-consciousness thoughts - just getting them down as a record. I will return to them one day and develop/tidy for a complete book but for now I hope you find them interesting enough to keep reading as they are. Thank you.

Recovering at home with assorted terriers for moral support/warmth

Rather than sit twiddling my thumbs entirely devoid of any focus beyond nauseating self-pity, I resolved to spend these 5 weeks up to the new surgery date in healthy industry and forward-planning. This blog entry is a bit of a long and winding road, so bear with me…

The nice thing about having lots of empty time for thinking is that you have, er, lots of empty time for thinking. With reduced physical mobility/activities available in one-leg limbo, no real time or timeline for ‘serious’ work, there’s only so much reading and Netflix bingeing you can do before you need a break and are left alone with the voices in your head. That sounds unnecessarily ominous but, actually, boredom is a wonderful privilege. In these chaotic and overstimulated times it’s a thing we’ve often forgotten as useful and productive headspace. And I realised, whilst cackling alone in the corner, plotting within my head, that time is running out.

I do like a cliffhanger paragraph end. Sorry. I don’t mean time is running out for my existence. I mean we have a limited period of productive working time before we shuffle from this mortal coil; what many call a ‘career’. I’ve had a portfolio one so far, dabbling with questionable levels of success in sport, academia, psychology, law, marketing, and sarcasm, but at 36 years old time is running out to do what I really want to do. Much of the issue lies in the fact I don’t know what I really want to do. Introspection and a quick reminisce over my life to date, however, has helpfully suggested I need to pull my finger out and get writing. ‘Proper’ writing. Like, books and stuff. And so we come to the Dragon’s Pen. There’s a few words on that link explaining the project in more detail for the interested, but basically ‘please give me money so I have the financial and creative space and safety to write my autobiography, amongst other things. Thank you’.

Supporting this new commitment to being a real proper paid-up writer of quality words, I am also going to supplement my income by renewing my speaking activities as they offer good rates for minimal hours. I’ve spoken on a wide range of things, across 4 different countries (ok, so 3 of them are part of the UK), and while I may lack Obama’s dazzling charisma, I am significantly more affordable and I imagine a little more relatable to most audiences. I’m confident, flexible, and have extensive anecdotes available to make relevant to your business/company/event, so do please get in touch at tom@tomstaniford.com to discuss your needs.

If you’d like to get a glimpse of my stage presence, I’m delighted to confirm that I’ll be returning to CamRARE’s RAREsummit25 this year. I last spoke there in 2023, so it’s nice to be invited back as a panellist discussing mental health and rare disease. My ‘bit’ will hope to cover diagnostic odyssey and the Rumpelstiltskin effect. If these phrases sound alien yet interesting to you, buy a ticket and come learn. Or catch up online later - they’re normally extremely generous with regards to sharing some of the conference content in the weeks following.

This 5-week pre-surgery period also gives me the chance to fit in various other medical appointments that have been piling up.
First amongst these; my hearing. I’m very hard on my hearing aids (well, hearing aid, now I’ve swapped one for a Cochlear Implant - blogs 5, 6, 7 also cover this process) because I wear them from about 5am to 9pm every day and stream lots of audio via Bluetooth from phone and TV. After a few years, the poor dears start to struggle a bit (professional audiologists recommendation is to upgrade every 4-5yrs or so).
My friends at ReSound UK heard the call when the Westfold fell, and I’m the proud owner of another ReSound ENZO Q. Sadly I couldn’t take advantage of their fancy new ENZO IA, simply because my hearing is so horrific that only the most Super Power of Super Power hearing aids can help me.
Then we needed to link this hearing aid with my Cochlear Nucleus 8, so that other devices recognise them as a single Bluetooth channel and stream to both at same time. This necessitated a trip to WEHIP in Bristol and a quick software tweak. Task accomplished, I once again have stereo Bluetooth streamed sound from my phone and TV. Magic. Life as a cyborg is grand.

Now, my eyes. I was just about to say that you will know from previous blogs that 3 or 4 months ago I had a small electrophoresis procedure to cauterise problematic eyelashes that were sticking to my large and very beautiful eyes - but I’ve just trawled previous blogs to offer a link and can’t find any evidence of its existence. My memory is fine. This is an example of Tom having so many medical issues and surgeries going on that he isn’t even aware of what has been made public or not. I’m hovering between proud and embarrassed. (Actually, there’s no blog record but I did indeed mention the surgery on my Instagram and BlueSky accounts):

I do not know how to make this image smaller on Substack.

Anyhow, that surgery worked but I have other eyelashes (all equally long and seductive) and some of those have ganged together to aggravate my eyes and hamper my contact lens use, again. I can’t keep having this op, endlessly, so we’re trying a different tack. What seems to be occurring is that as my skin tightens (thanks MDP) it is pulling the lower eyelid down, twisting the eyelashes inwards. And the top eyelid won’t close due to tightness, so snags, twisting in with the same effect. The surgical end solution is an eye-lift to my outer eye, solving the bottom, and a surgical lowering of my top lid so it closes. Some people pay thousands for these nip and tuck surgeries for cosmetic reasons. I get them free so I don’t go blind. Yay me. (although tbh with MDP I’m never going to sag or crack. Is that a silver lining?).

Unfortunately, my surgical dance card is a little booked up at the moment, and I strongly believe you should try to avoid irreversible surgery if at all possible (says the man with 1, soon 2, voluntary amputations) and so I’m keen to explore an interim measure. We go once again to the world of cosmetic surgery - I can have Botox. Hilarious. Apparently a cheeky unit or two to the top eyelid will cause it to relax, thereby giving it enough stretch to cover my eye properly when closed, keeping it hydrated and sweeping any problematic lashes before they get stuck. So we’re doing that on Saturday. And then again every 4 months or so. I’m hoping it will work and save me a ‘full’ surgery but I suspect after months/years of this treatment I will probably prefer to remove it from my schedule of ongoing appointments and just get the ‘final’ surgery. Such is life.

And now at last to Trevor! (fan club members rejoice!) He’s been doing his thing. He healed some time ago, superficially, so unsure what may be happening under the skin (if anything) but he’s happy. Had a number of appointments to be measured for his prosthetic liner, and then also his prosthetic socket. On 9th Oct we are hoping to be able to collect his completed first prosthetic leg!
I opted for a UK Size 9 foot in the end (previous blog outlines the underlying reasons). The outer socket, constructed of some sort of plastic or fibreglass type material, can be printed literally any colour or graphic possible. I was, very predictably as a dyed-in-the-wool roadie, seduced by carbon fibre effect. And as the limb/foot is now coming, we also needed to buy Trevor’s first shoes!

Behold:

Trainers for grip and cushioning, but lifestyle rather than ‘sport’ trainers so low-profile and not too much heel raise. Beloved University of Exeter #BleedGreen colour. And, in case I ever forget what my limbs have been christened, Trevor on the right, Roger on the left. Pretty. Damn. Cool. Although if I do wake up one day with memory loss, it’s going to be extremely confusing why everyone calls me Tom and I’ve got two different bloke’s names on my shoes.

So, this entry has been a mixed bag. Hopefully not too onerous for you. Unsure if there will be time (or content) to squeeze another blog in before surgery on 15th. If not, thank you for reading and I’ll see you, with Roger, sometime in the second half of October.

I’ve been quiet over the last month, as the twice-rescheduled remaining leg amputation has given me lots of thinking time. I have appreciated this period of quiet contemplation (translation: antisocial grumpy brooding) and I’ve come to the realisation that I need to make a change - both career-wise, and financially. How often do those two concerns come together, eh…?

I’ve hatched a plan, backed by some considerable encouragement from a number of people I really respect, professionally and personally. It’s an audacious one (I don’t really know any other). It’s an opportunity for business leaders and HNWIs to support my writing. A modern take on a traditional arts ‘patronage’, if you will.

It’s not Patreon, and it’s not Ko-fi, and nor is it JustGiving or Crowdfunding. It’s me. You know how much I love a bit of wordplay, a plump little pun or portmanteau, and so it is somewhat appropriately entitled “Dragon’s Pen”.

Please read the following intro/circular, and ask yourself “Who do I know who would be an ideal Patron for Dragon’s Pen?” and then pass it on to them, or direct them here. I have already assembled a number of patrons, and have 3 spots left.

Expressions of genuine interest gratefully received at tom@tomstaniford.com

Dragon’s Pen

Thank you for your interest in joining this exclusive group aiming to support Tom Staniford. Very simply, this project represents an opportunity to support, as patrons, an exceptional individual’s writing. As Aristotle said, “Excellence is not a goal, but a habit”. I’m hoping the following self-aggrandising screed conveys that I am committed to excellence in everything I do, and I will always find a way to do it.

The financial support of Dragon’s Pen patrons gives me both the creative space and the safety to pursue my writing goals while I am overcoming various physical challenges. First on my planned activities is writing my autobiography – part memoir, part self-help, part inspirational treatise on ‘resilience’. From there, I hope to explore some short stories and think pieces – either on my own website or for established publications. Partly related to these aspirations is that, following rehabilitation, I may also be able to return to cycling competition – raising my public profile and attractiveness to publishers.

I’m motivated to do this now because as a Marketing Consultant I spend so long thinking about other people’s words that I have no space left for my own. Mounting disabilities and a reduction in the public’s appreciation for quality, authentic, human creativity not made by AI, suggest that if I don’t make this leap now, I may never do so. My friend Tom McCallum suggested that there are good people in the world and some of them might relish the chance to support my writing, and here we are.

I am not a registered charity so any support from patrons is a ‘business expense’. Your monthly contribution is a retainer – in return, I will be available to you for up to 2hrs monthly to discuss any opportunities or challenges you face, and operate as a sounding board. I can offer innovative, determined, and polymath perspective and solutions. A contract will be provided confirming this structure to all parties.

Patronage is £500 per month minimum for a commitment of 24 months (2 years).

It may help at this juncture to see who you’re backing!

First, the nitty gritty…

I am one of 20 people in the world with MDP Syndrome and the medical study establishing the diagnosis was written about me. Alongside these symptoms, I have Keratoconus - surgery has stopped deterioration but fixed me with intense light sensitivity and focus issues. Without a hat and sunglasses outside I am effectively blind, and I use an eReader. I have had hearing loss for 25 years and recently become profoundly deaf, supported by a hearing aid and a Cochlear Implant. MDP syndrome creates connective tissue contractures throughout my body which has necessitated a voluntary double amputation of my lower legs- the remaining one is scheduled for 15^th October this year.

And now the happy clappy stuff…

I have 2 law degrees in 2 different jurisdictions. My Master’s of EU Law was delivered entirely in French, in France, alongside French students. I was the first deaf person to complete this prestigious bilingual double degree programme. At the University of Exeter I was one of six Vice Chancellor’s Excellence Scholarships, and also received a Sports Scholarship and Full Blue representing GB in para-cycling across the UK, France, and Spain. I was the youngest ever British National Para-Cycling Champion in 2011. Additionally, I have a Master’s of Psychology, and following 13 years full-time freelance consultancy I am a Chartered Marketer and Fellow of the Chartered Institute of Marketing and Royal Society of Arts, Manufactures, and Commerce.

Until recent hand and hearing deterioration, I played Classical Guitar to a professional standard and as a complete novice I completed the WSET Lvl 3 Award in Wines - Distinction in all written components - widely considered one of the hardest exams in the world, with a 50% pass rate even amongst industry professionals.

Recent examples of my writing can be found on this Substack, and I am extremely comfortable speaking about any aspect of my life to date and aspirations. No topic is too personal. Please do not hesitate to get in touch arranging a video call should you wish to meet me or discuss this project.

Thank you for your time and consideration, and I hope to hear from you soon.

Expressions of genuine interest gratefully received at tom@tomstaniford.com

A quote from one of my first confirmed patrons, Tom McCallum:

"Tom Staniford is one of the most interesting people I have ever met. His life story is one full of challenges so numerous, tough and near unfathomable, yet though his story is both fascinating and inspiring, what truly fascinates and inspires me, is Tom’s mind and mindset. He is a polymathic genius, allied to a mindset that allows him to achieve, even with what are often seemingly insurmountable obstacles, remarkable and unique things. I am energised to be one of Tom’s “Dragon’s Pen” patrons who now support him by giving him the creative space and freedom to write, a passion for him that is his “what’s next”. I am very excited about what his future holds.”

and another, from Adrian Webb:

“A great opportunity to support one of the most impressive, resilient and articulate people you’ll ever be lucky enough to meet. What Tom has achieved against the backdrop of one of the world’s rarest debilitating conditions (and in the middle of a double leg amputation) is beyond extraordinary.
Any company or HNWI individual who enters his orbit stands to gain in multifaceted ways from any patronage provided.”

And one final one, from Sam Duong:

“The Dragon Pearl resides in this one.

Inspiration and wit to match.

Patronage a wonderful way to partake.”

Strange how something so largely inconsequential (what’s a few more weeks in 18 months of waiting? I’m not going to die in the interim) can feel so significant. The logistics of reorganising other medical appointments and Alice’s work schedule were fairly easily overcome, but it still felt like a monumental amount of disruption. Twinned with the fact amputation #2 largely represents the end of a major chapter of my life and, essentially, the beginning of the rest of it. I’m pretty keen to begin.

Unfortunately, that feeling has only really mounted. I think it’s because I basically have nothing else to do except grumble and focus on the ‘lost’ time. The 3-week ‘extra’ is too short to pick up any credible paid work. I am already sticking to an established exercise/physio plan, to which 3 weeks makes negligible difference. It’s essentially just 3 weeks of dead time - late to op, late to recovery, late to prosthetic testing, late to new life. I haven’t been sleeping well, at all, for the last 2 weeks, and it’s not because of operation anxiety. It’s restlessness.

On the plus side, Trevor is doing very well. Struggles with sealing the PICO vacuum dressing were largely overcome, and it proved to be great for speeding up healing. He’s now mostly finished, superficially, with just a small scab left. Internally there’s one or two spots which still feel a bit tender, but by managing some daily touch therapy I’ve avoided any issues of hypersensitivity. And found a welcome additional usage for the Buddhist practice of ‘loving kindness’ meditation. This is surprising news because, to date, I’ve been rubbish at that particular meditational focus (where you essentially direct sentiments of loving kindness to all sentient beings). Rubbish because I am a misanthrope and struggle to believe less than 90% of you are wrong ‘uns.

Coming along with the 3-week ‘bonus’ restlessness, I have made the error of thinking about cycling again. It’s an error because, as they say, it’s the hope that kills you. Long before Op #1 I worked hard to make peace with my pedalling proclivities, so that if I never turned a pedal over again it would be ok because I’d accepted that as a potential outcome from this particular project. I was happy with my decision and happy with the possibility of just standing and the occasional walk, or maybe just always being in a wheelchair but at least minus a great many medical appointments and health issues.

But then I saw some tasty and very shiny bicycles on IG, and the competitive dragon reared its ugly head as I watched some influencers with truly horrific bikefits and techniques and thought “‘kin hell, even at my worst I pedalled better than that”, and here we are. Really, blame IG.

And so I often find myself daydreaming about winter base miles with a scarf and burned cheeks, or dragging through another garage turbo interval supported by Tom Morello riffage. It’s a pleasant and positive motivation for healing and cracking on but it is frustrating during 3-week inertia periods, and catastrophically dangerous to my mental health if it doesn’t happen in the coming months. There are no guarantees for my surgery and its outcome, and there are no refunds. It’s the hope that kills you.

And, see the thing is,… (you’ve got me started now) it IS rather exciting. The thought I keep returning to, with a dizzying hopefulness, is this: for the entirety of my cycling career (can we call it a career? A period? A prolonged commitment?) the thing which really limited me - in pushing the pedals harder in an interval, in pushing them longer on an extended ride, and in hauling back out onto the road for back-to-back days, was foot pain. Inflammation and genuine reticence to contact fully with the pedal and engage all muscles holistically. Of course fatigue, fuelling, and so on were also key limiters to training but I don’t think it’s rheumy-eyed romanticism for me to remember foot pain being the first issue, and one which also exacerbated/contributed to the others. So what happens if I don’t have it anymore?

Granted, I am older so the recovery function is probably not what it once was. And two prosthetic limbs are going to take a lot of testing and tweaking to get workable, and may never be. And of course I have to effectively relearn how to ride a bike again with this new technique. But it’s interesting to think where the ‘limits’ may now be?

Anyhow, back to Op #2. This one will be harder. We were ludicrously lucky with Op #1 in that my R leg had sufficient muscle tone and volume to enable the surgeons to unexpectedly get away with a bog-standard Below-Knee Amputation. I say unexpectedly because my skinny limbs suggested that a ‘back-up’ skin graft to help seal the amputation site might be needed (explained, ad nauseam, in previous blogs).

I may be being pessimistic, but I think there is no such luck with L leg. It has the ‘more rubbish’ foot (scale of 1-10…. about 12) so I’ve always favoured the R leg, and so L has always been a bit of a scrawny little beggar. Less activity = less nervous activation = more retinopathy, slower healing, etc etc. So odds are against us avoiding the skin graft. And if we do, I still worry there may be healing. rehab, and prosthetic complications. But, hey, fingers crossed. Think positive. At least it will be done.

And that is also something I’m looking forward to. This is going to sound odd, and it sounds odd even to me, but I’ve been feeling slightly guilty about having one leg. I can still pivot. All my transfers from bed to wheelchair to sofa to car to commode have been basically easy. I have essentially been playing at this disability lark. Scooting about with not a care in the world, only very very minor disruptions to my daily routine and schedule. All that is about to end.

Double amputee seems, somehow, more definitive. I don’t have one leg still in the pedestrian camp (pun, of course, intended - how could it not be?). I will have fully embraced a life of leglessness, dependent on wheelchair or prosthetics. No crutches will grant me temporary passage back to bipedalism - at least, not without the prosthetics. Everything will now take significantly more planning, skill, and time. For the rest of my life.

Even if I do ‘take to’ prosthetics, I will always need and use a wheelchair, because you don’t use them all the time and injuries happen. I keep repeating it, but there are no refunds. With leg 2 gone, the full exchange is made. The rubicon is crossed. This is definitively the end of one chapter of my life and the beginning of another. ‘Double amputee’ seems, and this is absurd, more like an achievement. You’re damn right it’s going in my social media bio.

Important Note: I am making light of this whole situation for entertainment purposes. But I really want to stress that this whole novelty ‘struggle’ theme - of accomplishing basic daily existence with no legs - is a very real reality for many disabled people. The 2 key differences being: 1) they didn’t voluntarily choose it as I, more or less, did and, 2) because this is just ‘daily life’ for many disabled people they don’t really get the opportunity to broadcast their experience as a new and intriguing topic for entertainment and exceedingly minor celebrity purposes, as I do. I just wanted to make that distinction very clear, amongst the flippancy. I get some ‘perks’ from my experience while for many this is just hard reality. Maybe bear that in mind when next you speak to a disabled person - the ‘carrying a burden nobody knows about’ is a timeless saying for a reason.

So despite the risks posed by tricky leg 2, there are several benefits I am looking forward to beyond ‘biped closure’. Firstly, huge reduction in the medical supplies I have mounted up at home. Most are for leg and foot wound care. Goodbye. Although as it has been prescribed to me, I cannot return it. And I don’t really want to bin it. Does anyone know how I can pass this stuff on to a worthy cause? Dressings and swabs and so on.

Next clear-out item: socks and shoes. Goodbye shitty unsightly custom shoes which often cause more damage than they limit. Goodbye socks which rarely sit right, and twist in the shoe, and always have cuffs too big anyway. Because, yes, I am about to get a foot upgrade. Perk of prosthetics? Choose a foot size. So at the age of 36 and height of 6ft 3, I will be growing overnight from a very crooked UK 2.5 and 4.5 shoes to a reassuringly manly Size 9. Or at least that’s what we’re going to try first. Bigger feet = more stability for walking, but less agility and more possibility of tripping over yourself. I’ve never walked with big feet. So testing required before we settle on a happy medium.

Final super cool bonus prosthetic perk: new shoe size = new shoes. (obviously once we’ve settled into a size choice). This will be the first time in my life I have chosen shoes based solely on aesthetics and not what I can fortunately fit my crippled feet in, or whether they are even wearable on a pain basis. So… those eye-watering neon multicoloured Asics gel nimbus? Yes please. The chestnut brown semi-brogues? Better order the black Oxfords, too, old chap. House slippers in Laphroaig tartan? Would be rude not to. Bright red Crocs? Of course. There must be some of my readership I have not yet managed to irrationally infuriate. This could end up being a somewhat costly enterprise.

Thank you, as always, for reading and I suppose I will see you on the other side

It does, however, leave me (and you) somewhat bereft of juicy introspective whinings and profound insights into the pre-op human condition. There is a comparative lessening of mounting anticipation now, a muted ascent to emotional fever pitch. There is far less natural suspense in a blog written 20-odd days before an op than there is in a blog written just 2 days before. I might have to actually be skilful. I might need to pen something readable as a result of craft, and not convenient timing.

Also, what is there to write about? I don’t really do anything, or go anywhere currently. I’m in healing limbo as Trevor, the affectionately-named first amputation, does his thing and makes his laborious return to sealed good health. But, needs must. The algorithm needs feeding. I need to vent op-reschedule disappointment. You, I am sure, have literally nobody and nothing else you would rather read than this humble missive. And so, the show must go on. Let me tell you about what my days currently look like…

Treading Water

The #GoodbyeLegsRide was 14 weeks ago-ish. Amputation #1 was 11 weeks ago-ish. Time flies when you’re having fun. I’m not, really. Don’t get me wrong, I’m absolutely fine. I’m not sad, or miserable, or in any way in dire straits. I am just in a kind of limbo, as we wait for the next op, and the healing to take place, and then the prosthetics testing, and then the cycling testing, and all the other things I’d like to get on with in life. Important and necessary healing is taking place. Important and carefully-organised medical interventions are being planned. I just wish it wasn’t taking so long.

I am not the most patient person, but it’s worth noting I first raised the issue of amputation 15 years ago. I seriously considered it 8 years ago. And it became a possibility 20 months ago. That’s 1 year and 8 months of putting my wider life on hold, turning down any large freelance projects in case of operations, unable to begin any bigger career or money-making activities. That’s a long time to be floating and essentially surviving off Alice’s income as a zero hours dairy milker. I have been doing some work but, to be honest, it feels wrong when my mind is completely elsewhere. I think it’s a necessary period for us. And I think it will eventually pay off, in about 6 or 7 months once all ops and (hopefully) rehab and prosthetics acquisition is done, but it’s not easy.

I hate to sound like a broken record but, once again, this is not me whining. I’m content with how things are. We’re doing what we can. This is just reality. It’s hard for lots of people. And significantly harder for many people - we’re very fortunate.

‘It’ll be worth it in the end’ can sometimes seem like its doing very heavy lifting, though.

Physiotherapy and Physical Training

I keep my spirits up, and my general health in reasonable shape, by sticking to some semi-consistent physical effort. Mens sana in corpore sano, as they say. That means about 30 mins of good quality stretching and mobility work every day. Basically rolling about on the floor adopting weird poses, breathing, and hoping nobody is surreptitiously filming it for later laughs,. There’s a decent amount on keeping Trevor flexible and avoiding him building any bad movement patterns, and a decent amount devoted to preparing for the next amputation - keeping hamstrings loose, posture and core stable, etc.

Alongside that we have weights. This has been going on for about 18 months now - good general body stuff but, for me, a focus on building upper body strength and core to help with transfers from wheelchair to bed/sofa/car/whatever. Obviously since Trevor’s arrival its got a bit trickier and I do more reps on lower weights, no compound exercises, no barbells, a lot more seated work with dumbbells, etc. Basically being creative with dumbbells and kettlebells.

And of course cycling. Turbo trainer. No sight/sun dangers, less chance of falling off, less potential for foot issues, focussed intensity. Mostly z1 and z2 base riding, with a focus on good technique, with some short intervals at tempo and sub-LT (big gear, low cadence) to maintain what little muscle mass there is. Of course that stopped in May with first amputation. You could argue that I could pedal one-legged on the turbo but the idea just gives me horrific daydream nightmares of falling/sliding off saddle or otherwise ending up introducing Trevor to a cold concrete floor. I did something like that once, and have no desire to repeat it.

There is/was the potential of a clip-on handcycle for my wheelchair which would mean I could exercise and get some cardiovascular benefit (no legs required!) but to be blunt we don’t have the money. I explored the possibility of doing some marketing work for two brands who make these devices, offering to use my platform and social media presence to push people their way and they weren’t interested.

Finally, Compex. Basically neuromuscular electrostimulation. Like those ab trainer pad things you can get to zap yourself to a 6-pack (allegedly). But these are proper medical/pro devices and really useful for rehab and stimulating muscular contractions where your own ability to do so may be compromised. I’ve been using my (sponsored, to be clear) set for many years now and this helps me keep my legs ticking over while I’m not actually using them very much at the minute.

And that’s the fitness regime. Physio, weights, turbo, Compex. All fairly low-level stuff for safety and not compromising the healing going on, but the volume (and time commitment) mounts up.

Supplementary Issues

They’re called supplements. They supplement a good diet; not replace it. I wish more people (especially athletes) would recognise this.

So, first things first- I’m eating well/healthily. All the food groups. Generally more vegetables than fruit, as the diabetes doesn’t always appreciate the sugar.

One thing I have particularly drilled down on (partly due to my medical condition, partly due to the healing going on) is protein. Good quality meat/fish/eggs etc. But I also supplement this with a scoop or two of whey protein every day. And then I also add creatine (most-tested supplement ever - great for muscles and brain) and collagen (hydrolysed type 1 marine collagen for wound-healing). Can’t build/repair new tissue without the appropriate building blocks!

Alongside my protein ‘stack’, I have some other daily supplements - Vitamin D (numerous benefits), Turmeric (anti-inflammatory), Zinc/VitC (immune support and helping the collagen absorption), Magnesium (good sleep and general health. And of course we have Metformin for my diabetes (not a supplement, a medicine, to be absolutely clear!), and the occasional paracetamol.

This is far and away the most pills I’ve ever taken in my life, and I’m not a huge fan, but I think in this situation needs must. I want to maximise Trevor’s recovery, prepare for Roger’s arrival, etc etc. On the supplement front- there’s an absurd amount out there. Some of it works. Some of it doesn’t. I’ve tried various things, seen if they’re worth the cost. Lots of them were not. The above ones made the cut- for me. Your mileage may vary.

In vino veritas

Can I just say it really hacks me off that over the last few years I ‘got into’ red wine, to go with my whisky and coffee nerdisms, to the extent I even did a WSET Level 3 qualification in wines… and I currently drink less than at any point in the last 5 years? Yes, because it turns out alcohol is a big no-no (or at least strongly cautionary no-no) for amputation healing. Nobody told me this. And because I am intent on maximising little Trevor’s progress, I am cutting myself off at the bar. Well, wine rack. One glass max. Every week. I admit I occasionally falter. But for the most part I am sticking to this.

My saving grace is coffee. 3 cups a day. Non-negotiable. It used to be 1-2 good quality espressos/V60s a day. But if my happiness is being throttled by semi-teetotal restrictions, I am compensating so I have at least some joy in my life.

I have yet to find a non-alcoholic wine which tastes anything other than muted grape juice. I think most of you know my distaste for most lagers/IPAs. There are an increasing number of really good and tasty non-alcoholic beers, though - Guinness Zero and Leffe 0% being current favourites.

Negative Pressure Wound Treatment

The final, and recent, addition to may amputation healing arsenal is a PICO dressing. Basically an air-tight vacuum dressing which goes around Trevor and sucks all the air out. It keeps the wound clean, sucks away any exudate, stimulates new growth, all sorts. It’s a real faff keeping the seal, and moving around with a wire (and small vacuum pack) attached to me again, but it really has helped speed healing. So worth it.

Netflix/AppleTV/AmazonPrime/YouTube/Kindle

Probably doesn’t need explaining. We’ve got all the subscriptions. Lots of ‘content consumption’ going on. Please no recommendations- I’ve either watched it, or it’s on our upcoming hitlist.

In conclusion…

And there we have it. How was it for you? It didn’t really fill me with literary pride as I was writing it, but I hope it was at least interesting and shared a small glimpse of what I’ve been doing with myself over the last few weeks?

Thank you, as always, for reading. New subscriptions welcome. Comments, shares and likes equally appreciated. I promise next time I’ll return something a little more interesting.

T

A grand total of just over £15,005 was raised

After JustGiving had taken their necessary pound of flesh, the remainder was split between our 4 illustrious charities: Devon Air Ambulance, the Devon and Exeter Institution, Exeter UNESCO City of Literature, and Wheels for Wellbeing.

This meant each charity received from me, via the wonders of internet banking, the sum of £3606 75. Always keep the receipts… they are posted below:

You may note there isn’t a receipt from the Devon and Exeter Institution. This is mainly because we forgot, as we all got a bit excited by their Mid-Summer Party celebrating the end of a multi-year £1.8m Next Chapter regeneration project… and they wanted to buy a bench in time for it! I’m sorry, what?

My bench!

Let me explain… I felt very strongly that the donations to each of the charities should be considered ‘unrestricted funds’, meaning that I do not specify what they spend it on. I think that the people who know what the charity needs most is the charity itself. So I leave it up to them.

I did, however, have some intriguing notions (it happens, albeit rarely), and I asked Emma at DExInst if perhaps they could invest a few hundred quid of their money in a bench for their lovely courtyard garden. They have a number of folding tables and chairs which come out in good weather for their burgeoning lunch offering, but nothing out there permanently. I thought an all-weather bench would be a nice addition and give members an additional place to read and enjoy the Institution. Thankfully, they agreed. And Emma found this terrific Lutyens bench which is spectacularly fitting.

As an added bonus and bit of ego-massage legacy-making for me, they have enthusiastically suggested sourcing a small plaque for the bench, pronouncing:

In loving memory of Tom’s Legs
#GoodbyeLegsRide, April 2025

(See our temporary solution in the pics)

And so, I (and you, via your donations) have been privileged to be able to add another small story to the illustrious fabric of the Institution’s heritage. A really nice bit of history and a living complement to the community. Maybe you would like to go and visit it? (Yes, this is a veiled invite to either become a member or join a tour)

In a similar vein, Anna of ExCoL was extremely open to ideas on what to spend their donation on. We have loosely brainstormed an idea for some sort of Disabled writers offering to complement their wider inclusive literature programmes - watch this space!

I am unsure what the Devon Air Ambulance and Wheels for Wellbeing intend for their funds but please rest assured your donations will be spent wisely on supporting their important respective missions.

All that remains to be said is, once again, THANK YOU. All of you. From the £5 donations through to the handful of big-hitters who, incredibly, dropped a k… every single donation has been hugely appreciated and I know, in these trying economic times, sometimes that £5 represents a big sacrifice for the week’s food budget. So, seriously, thank you.

And thank you to everyone who spread the word, shared the relentless social media deluge (apologies), chatted to their colleagues about it, emotionally blackmailed family members, or joined us on the ride… thank you.

And thank you for reading.

Ok, so it wasn’t quite an ‘audacious’ hospital breakout. The fact I had the full encouragement of consultants and nurses, a discharge note, and a stack of prescribed pain medication, would suggest I’m not quite the independent rebel ‘breakout’ artist this blog’s subtitle suggests. But in spirit. I made a spirited escape in spirit. Can you have a cocky swagger in a wheelchair, being wheeled by someone else?

I was very keen to get home as fast as possible; I always am. Hospitals, great for the emergency life-saving care, less good for the routine. Lots of people, lots of bugs, warm climate, lots of stress and pressures. Staff do a terrific job under horrific conditions but fact remains it’s a hospital not a health spa. So after 6 days of post-op recuperation, I am/was keen to return to my well-stocked espresso machine, terrier support crew, and furniture which does not have plastic coverings.

Despite the return to home familiarity, a lot has changed - and the realisation comes in stages. Some of them repeated several times before they start to sink in. I have lost count of how many times I am getting dressed, put my L leg through the boxer/trouser leg, and then go to the R leg and find an unexpected mismatch between the leg hole I have prepared and the shortened limb which does not need it to be extended that wide. Even after I’ve chuckled, raised a ‘what am I like, eh?; eyebrow skyward, and then returned with focus to the simple act of putting my undies on, it is still somehow difficult. I have my body parts. I have full control of them. I can see, clearly, which bit should go where. And yet it is bizarrely difficult battling with my own conscious and unconscious self to get Trevor through the leg-hole. It’s very difficult to explain.

Other fascinations: my ghost leg. I’m not talking about phantom limb (although there’s plenty of that, but mercifully little phantom limb pain so far). When I’m lying flat on my back in bed, legs straight, it feels like my legs are the same length. Despite the fact it’s Trevor in contact with the mattress, it ‘feels’ like my heel is (the heel which no longer exists). Then it gets weird.
If I bend my knee and raise it off the mattress, the angle of my knee flexion precisely mirrors what it would do if I still had the lower leg - essentially scraping my heel along the mattress. That’s the power of habit. That’s my brain, so used to my previous dimensions, actively lying to my senses. And weirder still…
If I pause raising my knee, and I try to lower my thigh back down to the bed with my knee still bent, there is the perception of a small amount of resistance. My brain is literally trying to stop my brain from doing it- thinking the heel would be in contact with the mattress still, and restricting this movement. If I push through (can’t quite describe how/why this is ‘hard’ on some level) it feels like my lower leg/heel is passing through the mattress, like a ghost. The sensation only increases in intensity the lower my thigh gets to the mattress. It genuinely feels like I am carrying out some sort of reality-bending inter-dimensional wizardry. Like if you were a ghost and could walk through walls. That’s exactly the feeling. No longer sci-fi or fiction. I am experiencing that exact feeling. It is awesome, in the sense that (and not wishing to brag) you won’t experience it. You fuddy-duddy normies with all your working limbs, never being gifted this incredible insight through the doors of perception. Weird, and also strangely precious. Maybe this is what people experience in LSD, ESP, or altered states of consciousness studies.

I have covered in previous blogs how my CI surgery and use really, fundamentally, changed my perceptions of how we construct our own reality through the senses, and this amputation has added another physiological aspect to that. It’s one thing to read about this stuff, but experiencing it really does help with understanding. As somebody who has done a fair amount of reading on dualism, self/notself, and secular Buddhist thought, it has been absolutely invaluable. Anyway, that’s one of the silver linings. It’s a really rich period for introspective thought.

Other, less weighty and more funny, realisations - I like to cross my legs for meditation or just sitting on the floor. I am gazumped. I spent a good 10 mins trying to work out how that works now. Similarly, I’ve always wanted to do that cool lotus crossed legs where your feet are on top of your knees- but never been able to due to flexibility. No longer an issue. Another repeated observation related to getting dressed but also how I move through space - I feel really compact. It’s just absurd. I feel like a small Japanese microcar. I am tiny and cute, which at 6ft 3” is not a familiar feeling. I feel I could fit in most overhead storage bins. I have no idea where these ideas come from. Other funny realisations- if I was able to stand on my stump, the reduction of a few inches would mean I am now at Alice’s height. I have no idea why we both think this is funny, but it is.

Speaking of standing on the stump. Don’t try it at home, kids. One thing I’ve always been cognizant of is the fact comfort often leads to complacency. And as Trevor has gained in comfort and reduced in codeine/paracetamol intake, so has my returned reliance to unconscious thought/movement. And of course my habits are still working off the body dimensions I used to have.

So when I was sitting on the edge of the bed and lifted Badger the terrier to put him on the floor (he’s 12 now and I like to try to protect his joints a bit). I was not unduly concerned when I started to slide off it. Indeed that slo-mo film thing kicked in at that point, so I had plenty of time to consider, as I was sliding off:

“hmm… I’m sliding off the bed… that’s not ideal. No matter, I shall right myself with my leg. No biggie. Oh, wait…. didn’t you have an amputation recently? mmm, yes. Mmmm. It’ll probably buff out. Likely just be some discomforting pressure, its been a while so healing is probably progressed. See? It’s not even hurting, is it? Quite comfortable really. What’s that? Because I haven’t contacted with the floor yet? Yes, I take you point. That is indeed correct. My, it’s quite a long way down, isn’t it? Been able to have this whole extended conversation en route. Aren’t brains magical? Anyway, I really think you should show a bit more concern at this juncture. This might hurt. No, wait, the moment has gone. Is that? Oh, yes, we have contact. Well, that’s not so bad. Can barely f- “

It is fortunate, reader, that we live in a rural location. Because the prolonged barely-human screeches of agony which passed my lips would have led most people to call either 999 or for a friendly local exorcist. I didn’t even swear. Swearing requires a degree of conscious capacity I did not have.

I am familiar with pain, having explored more than is perhaps my fair share, and putting your weight on a healing stump is a Top 3 contender. It’s up there with infected dry socket (Google it) and having someone saw your ribcage while you’re awake to insert a chest drain (you can’t Google that, just take my word for it). All 3 are examples of ‘dicking about with my nervous system’ as I have mentioned in a previous blog, and best avoided. Because that sort of pain is unavoidable when it hits. It is all-consuming.

And on that happy note. I think we can wrap up this blog entry. I am mindful that I don’t actually go into too great detail on much of the medical and philosophy stuff and many of you would like more sober reflection and less penis jokes, but think of my audience. I have a teeny tiny leased subplot in the great internet allotment. Much as I would like to devote myself to high-brow rhetoric and very very clever insights, they’ll be read and appreciated by about 4 of you. I feel it’s better to write something more accessible and maybe more comforting or useful or spirit-lifting, so more people can benefit. So the stream-of-consciousness and wit stays, certainly while I can only manage about 30-60 mins of writing a day during current healing. If you want an in-depth discussion and treatise at or beyond PhD level (various disciplines catered, various subjects discussed), feel free to book in with me directly. Don’t forget the red wine.

All that remains to be said is I’m hoping for a bit of quiet healing for the next few weeks/months. We’re 4 weeks post-amputation now. We have to hope Trevor heals and is not unduly affected by MDP syndrome slow healing issues. Then, on August 6th, the left leg comes off and everything gets significantly harder.

Thanks for reading, as always.

T

Previous blog

I’ve just had one of legs cut off and, frankly, the most painful thing about this whole escapade is the urinary catheter. I feel very strongly that my gentleman’s paraphernalia remains my exclusive sovereign property. Not sharing it with an interloper tube which catches agonisingly every time I adjust position, sheets, or even breathe too enthusiastically. Still, it comes out 3 days post-op so I have only a few more days of additional discomfort.

I am very happy to confirm (although you probably guessed from all the social media activity and the conspicuous lack of negative updates) that the amputation went very well. Unexpectedly well, actually. Plastics team were on hand in theatre in case we needed an emergency skin graft to help seal the stump, but were not needed. It turns out that, despite initial fears, I had sufficient volume and quality of calf muscle to round out the stump, so extra ‘material’ not required, and a very normal Below-Knee Amputation was carried out.

This is great news because it’s the standard procedure, performed countless times, great outcomes, great healing, great prognosis, etc. All great. In fact the only people who don’t think it’s great might be my superb surgical team who were quite excited about the slightly experimental graft ‘back-up’ option which, apparently, hasn’t been done before in Exeter, or maybe even South West. Ah well. Maybe they’ll get their chance on August 6th when the Left leg comes off- it has more damage and less muscle than the R, so graft skills may still be needed.

Life with the stump in hospital settles quickly. I have ample reading material. I have liquid morphine which is a helluva drug. I still flip the sheets regularly to look (gaze lovingly? Would that be weird?) at my stump. In classic Staniford-Miller tradition, my wife Alice has insisted ‘the stump’ has a name. Why not, eh? I’ve already anthropomorphized him as a beloved addition (or subtraction… this is very confusing), so let’s go ahead and christen the little fella. When I was first wheeled back to the ward the previous occupant of my berth still had his name written in marker on the whiteboard - Trevor. So ‘stump’ has become Trevor, or as my friend Caspar says ‘big Trev’. It seems fitting.

On a pre-emptive basis, we’ve also named his future stump-mate, for the Left leg op happening in August. When I first showed Caspar and his partner Cassie the video of ‘Trevor’, Cassie immediately laughed and said ‘Roger Roger’ - because admittedly Trev does look like one of the droids from the Star Wars prequels and this is their fallback expression. So, future stump naming completed, subtle nod to Star Wars nerd-dom included. Roger and Trevor.

One final bonus of ongoing #OpChop is that my discarded limb has been shipped to Edinburgh into the waiting hands of Professor Robert Semple. Among his numerous research interests are lipodystrophies and my own MDP Syndrome. We are fortunate that when I was a kid, long before diagnosis, they took various bio samples from me. They’ve taken samples from me recently, too. And, lo!, we have the world’s first 20yr+ longitudinal study on the effects of MDP syndrome on the genome. And with a whole leg in a climate-controlled cupboard somewhere, we now also have a huge source of extra skin, tissue, hair, bone, marrow, etc samples available for testing to their hearts content for all sorts of things. This might help in all sorts of ways for helping us understand MDP, lipodystrophies, and their genetics, better. So, lose a leg, contribute to medical science. I am just too generous. So generous, in fact, they can have another one in two months. I should start charging.

Continuing with this round-up of hospital experiences, I can confirm that NHS catering has not improved in recent years - but I’m there for calories, not a Michelin star. The saving grace has been custard. I happen to like custard. So the fact it appears, regularly, in accompaniment with crumble or sponge, as a dessert option at both lunch and dinner, is spectacular scheduling. Twice daily custard is pretty much guaranteed to heal even the most pernicious wounds. Well done NHS.

A few days in and the physio comes round. They are happy with my transfers from bed to wheelchair to chair and any combination of these. I have good upper body strength for a weedy cyclist, having spent the last year preparing for this with very slightly progressively heavier modestly-heavy weights in the garage. The transfer process is somewhat complicated by the fact I am led around by my willy (some would claim all men are, in any case) and the still-attached urinary catheter. I explain this, apologetically, to the female physio and she seems largely unimpressed by my plight. With the catheter line, and the line from the nerve block taped to my thigh, I am more concerned about strangling myself than falling on my stump. (speaking of which… *future blog post klaxon*)

The daily routine of drugs, injections, bloods taken and further sharp things being stabbed into me continues. I wouldn’t mind so much that not a single person has offered me a sticker or a lollypop for my time. Things used to be different. Cutbacks, no doubt. One of the nastiest injections is from the one they give you to stop clotting while you’re spending so much time immobile in bed. It is a tiny little needle, aproper little prick, and a few seconds/minutes after they’ve given you it you get this really odd uncomfortable bruising feeling. For some reason it has to be injected into the stomach, so the nurse(s) have to pinch a small roll of belly fat and have at it. Cue the following exchange:

“Your stomach is really hard. Is that normal for you?”

“Yes.”

“What’s that called?”

“I believe they’re called abs.”

I suppose there must be some benefits to lipodystrophy. The lack of subcutaneous body fat means the Staniford six-pack remains in place come rain or shine, feast or famine, and any exercise(s) to sculpt simply makes it look even better.

Which is a great time to wheel out one of my favourite stats. I’m 35 now. Do you know how many men 35yrs+ have a visible six-pack? Out of a million? Have a guess.

40.

Not a typo. 40 out of 1 million men older than 35 have a visible six-pack.
How many men in the UK are over 35? Maybe 20 million? So there are just 600 of us chiselled lithesome morsels around. Incredible. If you’re one of them, hello fellow Adonis, give yourself a pat on the back. And maybe a cream cake. Just this once.

Stomach discussions aside, there is something nice about enforced medical stays and serious healthcare interventions - beyond the obvious fact that, you know, it has hopefully nudged you along the way to better health. I’m talking about concentrated living again. We live in a tumultuous world of distractions and competing interests, fleeting dopamine hits, throwaway materialism and erratic focus. Being in hospital often changes that, as your interest narrow to a) when is my next meal and what is it?, b) when/where can I go to the toilet?, and c) when do they plan on turning the lights out so I can sleep?
There’s something to be said for this return to humble priorities and simple existence. Some might call it mindfulness. Some might pursue it with bikepacking or “van life”, or a hyper-focus on a specific hobby or minimalism. I’m always grateful for my stays at the NHS’ pleasure because it helps me celebrate the small, but important, wins. Like going to the toilet without a tube in my willy.

The final few post-catheter days pass peacefully, with healing happily ongoing. Somebody on the Consultants round foolishly mentions that 7 days would be normal post-amputation before discharge. My raging competitiveness kicks in. I’m out in 6.

Thanks for reading.

Next Time: Home Comforts

*Trigger Warning - there’s a video at the bottom of this blog which shows an amputated lower leg with a slightly bloody dressing. And an extremely tasteless hospital gown -complete style failure *

The 21st May offers a fairly nondescript dawn. It is not especially bright or gloomy. There’s not much of a chill, or suggestion of a baking afternoon. It is blissfully unsurprisingly average, which makes my espresso taste all the more satisfying for being enjoyed in calm setting. There is no breakfast. Water and black coffee alone, as in a few hours they’ll put me under and the surgery begins.

We arrive at the RD&E at 7am. No issues finding a parking space at this hour. Things are running smoothly; a little too smoothly. I am suspicious. I suspect this is just an expression of repressed stress and an overactive imagination wanting something to do. Wheelchairing down the long gleaming featureless corridors to Surgical Admissions.

Name. First line of address. D.o.b. Name of GP. Have these two wrist bands. Down to the ward. Theatre 5. Nice. My lucky number. And I’m first up. We continue into my little berth. Strip off. Backless gown. Lie on the bed. Bit of a shiver. It’s not cold. Look at the patterns on the ceiling. Try to decipher is there is any hidden message there, any omen, any guidance, any sign. Nothing.

Surgeon arrives. Thank Fuck. Something to break the stretched silence. It’s Ben, the Plastics Wizard. A familiar and reassuring face. He’ll be on hand in theatre in case we need the graft. Run through for the 3rd or 4th time what they’re planning, do I understand, do I consent, do I agree to the dangers. They never ask if you’re aware of the potential benefits, do they? I agree to it all. They draw a big black arrow on my right leg.

He mentions, almost in passing, they’re hoping to do the Below-Knee but if they can’t they’ll just go through the knee, or above. Eh? It’s a cliché I feel ashamed to write, but time stops. Eh? Stunned bewilderment. This is news to me. This isn’t what I signed up for. So, if the BKA is not realistically possible, they’ll amputate higher up the leg, yeah? With me asleep? Well, it would be awkward to wake you or leave you on the table for a procedure which, at that point, you will need if you have any plans of using a prosthetic.

It’s a fair argument but I can’t commit to it. Do what you can. If it goes tits up, I want to be awake and lucid to consider next steps. We agree. I do not want anything through my knee or above it. While healing may be faster/easier as you move proximally towards the heart (and stronger circulation), learning to walk and walking with through-knee and above knee prosthetics is a massively harder and more energy-intensive proposition than below-knee. But ok, crisis averted. We agree they’ll wait for my consent if it’s needed. I feel sick. Alice looks white. Readers of previous blogs will know that I’m aware we may have needed to go ‘higher’ up the leg - I just had not expected that to be a potentially immediate proposition. I lie back again and try to will the rising nausea away.

The Anaesthetist arrives. I don’t catch his name. I’m still dwelling on the shock of the now-discounted higher amputation fallback. Something about needing a nerve block into thigh. I nod, returning begrudgingly to my faculties. Yes. All ok. Let’s go. Some more consents. Some more forms. A few minutes of quiet. Goodbye Alice. We’re moving.

A small room, annexed to theatre. We are here for the nerve block. It’s a very small tube they insert into my thigh. Local anaesthetic, they properly dig it in. Right under what I think must be my lateral quad. I don’t know. I’m on my side, uncomfortable with him digging away, using what I think is an Ultrasound probe, to get the needle/tube/whatever as close to the femoral nerve as possible. They like you awake for this, so they can hear your yelps and see you twitch. The closer to the nerve without actually in the nerve, the better. Post-surgery, they pump anaesthetic down this line every 6hrs, bathing the nerve and keeping it basically ‘asleep’ for the first few days to help manage pain and healing. It is fucking uncomfortable. There is a pressure like a deep-tissue massage, accompanied by the occasional jerk and tingle as they skirt a nerve. I have a well-documented pain tolerance, but when people start dicking about with my nervous system I am not a happy bunny. It is a different type of pain. It is in your marrow, unceasing, unremitting.

Line is in. Smiles all round. Feel this liquid go down the IV, Tom. There might be a burning. Count back - ten, nine, eight, sev- Gone.

Eyes open blearily. There’s someone in the room. Can I have a sick bucket/pan thing please? Of course. Dry retching. Stringy mucus generic froth. Better out than in. Concerned nurse. Don’t be. I always do this after a general anaesthetic. Flushing the crap out the fastest way. The fact I know my body does this perhaps reveals the number of general anaesthetics I’ve had. Vomit completed, I drift back to opiate oblivion as they wheel me from my little recovery room to the ward.

I wake up feeling strangely perky. It is late afternoon, later than I expected. I hope that doesn’t mean there were any complications. I am in a clean and comfortable bed, a single white sheet draped over my body, as like all hospitals it is hot. I note the starch obscures any outline of my legs. I don’t feel swollen or sore. Just numb, still. A pleasant weightiness. Heavily relaxed.

I am aware, with a mounting sense of relieved breathlessness, that I’m approaching an important moment. It’s important because I’ve been waiting for it, on one level, for about 15 years - since I first asked myself what the point was of having legs which seemed to deliver more pain than mobility. It’s also important because I have been given an absolute gift. I don’t mean in a cringey ‘every moment is a gift’ way (although it is), or even that I have the tremendous opportunity of doing this through the NHS (Although it is, too. For non-UK readers, this means I don’t pay for this surgery).

What I mean is that most people have amputations due to trauma (accidents, injuries, warfare) or necessity as a result of serious progressive illness. They lose their limbs without choosing, or choosing under life-threatening duress. It can take a long time to adapt to, or accept, that new reality and it is invariably a step down from their previous bodily autonomy.

In contrast, I’m getting an upgrade. Even if it’s not 100% successful, my mobility and pain and infection risk situations are all improved (see previous blogs). I chose this. So I really really need to be happy with this from the get-go. I don’t want to have to wrestle with regret. Additionally, every paper I’ve ever read from any discipline indicates that healing, prosthetic use, and longterm health outcomes are all vastly improved if you accept and even like your new limb situation. I figure; start as you mean to go on. I don’t want to accept or like my new stump. I want to love him. Fundamentally and completely, on an almost spiritual or existential basis. I’ve got to live with this for the rest of my life, and I want it to be the positive outcome I always hoped for. So I took a few seconds to psych myself up and imagine an ecstatic first meeting. And then pulled back the covers.

You can probably hear our shared delight. It’s a bit disconcerting, and looks weirdly like an optical illusion, but this is my stump. Mine. There is a wholesome feeling of ownership that is palpable and overwhelming. It’s crazy how taking something away has actually left me feeling more whole. And I don’t need to worry about odd socks for the next few months.

You’ll have to forgive this post which is, I feel, a bit disjointed and unpolished. It’s raw. I’m forcing myself to write it now, while it’s fresh. I’m not even close to really processing fully. I also refuse to edit it. I want it to stay ‘as is’, as a record. It’s messy but it’s honest. I don’t agree with retrospectively returning to make it presentable. This is it. Sorry!

The calm before the storm. Except I’m not really calm. I’m quiet, yes. But internally there is a maelstrom. I’ve had doubts, and anticipation, before of course. But nothing on this scale - where you find yourself regularly wandering into a room for no reason at all. Not wandering in and forgetting why you went in there. Wandering in just as something to do. Searching. Displacing. Moving to try to dispel this nervous energy. Or find the source and, with a sigh of relief, quell it - to silence and soften the cacophony of erraticism which is just there.

I finished work on Sunday - scheduling their last few social media posts which will be published over the weeks I am “off sick”. I hate the phrase. I’m not sick. I’m… recuperating. But then I hate any suggestion or affront to my self-identity as an independent and competent individual. Wrapping up work on Sunday means I have Monday and Tuesday totally free before Wednesday op, to spend on recovery, preparation, rest. I thought this was a good plan, until I did it and realised I’d have nothing to distract me from the looming surgery.

Normally, when my thoughts are jumbled or emotions high I process my thoughts with 2 practices: writing and meditation. It’s generally an infallible tactic, by letting me analyse and consider my thoughts from a dispassionate and more objective perspective. I’m writing observations on someone’s else’s thoughts. I’m meditating on someone else’s thoughts. There is a gap, a breathing-space, a reclaiming of control. What neuroscientists inclined to secular Buddhism tend to call ‘meta-cognitive introspective awareness’.

Yet despite the carefully-planned freedoms of Monday and Tuesday, I find myself totally unable to do any writing or meditation. I don’t even manage to sit on the meditation cushion or at the kitchen table; my usual writing location. I actively avoid both. And I intuitively know exactly why. I don’t want to be alone with my thoughts. They are too many and too powerful; fractured and chaotic and intangible. I don’t have the courage or the constitution to wade through them and hack out any semblance of understanding or even to fully identify them. So I float hungrily from room to room, looking for them. Or looking for clarification. Or a distraction.

As I’m making up thoughts to think that don’t involve amputation, it strikes me that it’s been an interesting year. Almost exactly 12 months ago I was coming round on another hospital bed after my cochlear implant surgery. When they nixed the last vestiges of my organic hearing and implanted an electrode array alongside my skull - ensuring a synthetic representation of sound and my full assimilation into the Borg.

Cochlear implantation has huge effects - ask anyone who has had one. It is, without exaggeration, a truly life-changing surgery with profound personal and interpersonal repercussions which are felt for many years after, as you adapt to new sounds and their processing. It is massive. I wrote several blogs about it at the time (see blog history).

But. Nothing. Empty. There is just a void of feeling. Whether it’s the romanticization of the past, the fallibility of memory, the softening of impacts, my CI surgery feels like it barely touches the sides. I’ve been focussed so intently and so long on fighting to have amputations and planning for amputations and evaluating decision to have amputations that the life-changing CI revolution taking place within one of my fundamental senses has somehow passed me by. I feel almost cheated. It’s like a loss. I find myself feeling strangely guilty that I haven’t spent a year in grateful appreciation, giving what in any other circumstances would be a major development the respect it deserves. But it’s just ‘yeah, fine… so about those limbs’. It’s a fixation. The ‘guilt’ is absurd and indulgent.

That’s not to say I am totally unaware of the positive changes the CI has made. I have noticed a significant decrease in my need to lipread, my repeated requests to ‘could you say that again, please?’. Alice claims to speak at ‘normal volume’ now and I often, and for the first time ever, now catch snatches of conversation from other groups, other tables, other rooms. My appreciation for music is still in a somewhat complicated period, but it’s a trade-off I’m content with in exchange for the speech gains.

As the coming months promise numerous restrictions on my mobility, we felt it was a good time to fit the CI review appointment in before the amputation surgeries, which is why on Friday 5 days before amputation surgery, we are in Bristol at the West of England Hearing Implant Programme offices. To cut a long and fairly mundane testing procedure short; scored incredibly well across all parameters. My understanding of speech in all situations is massively improved over pre-CI days, and even over the 3-month post-CI measures; simply because of practice. My brain has got better at deciphering the curious stimuli traipsing along my auditory nerve. So, another pre-amputation box ticked. Sigh of relief. Back onto worrying about surgery.

The final thing I wanted to do pre-amputation, and will mention in this stream-of-consciousness hash of a blog, is I wanted to film my walk from the bedroom (scene of getting dressed in cycling kit) to the turbo trainer in the garage. Why? Well, it’s a documentation. We have a tendency to romanticize the past and make rosy the previous slings and arrows of outrageous misfortune. I wanted a record of the journey I have made literally hundreds of times over the last 2 years so that if I ever regret my amputations, when the tough days do arise, and think I should’ve stayed with the previous status quo, I can go back and watch this simple journey and see how utterly shit it really was. So I can see the ungainly stagger and the slow ration of painful movement and count myself lucky that, while amputations, rehab, and prosthetics present many new and exotic struggles, they are put in their right perspective viewed against the preceding limb setup. Which was meagre. And forlorn.

Planned this little spot of filming for 2 weeks. Didn’t do it in the end. Lazy. So there we are. There are limits to my get-up-and-go and amongst all the other pre-op preparations and loose-end-tying and self-calming, it just fell by the wayside. In subsequent rationalisation (self-justification) I came up with a new excuse: I didn’t want a record. It would unnecessarily tether me to a previous existence, provide an unproductive anchor to a reality no longer valid. Need a clean break. Fresh legs. Fresh opportunity. Abandon all previous notions. Comparison being the thief of joy, surely it is better to neglect wholesale the previous situation and embrace the new. It is what it is. That’s where you are. Amazing what we tell ourselves, eh? The mental gymnastics of rationalisation.

Rationalisation has been key to this process, as these amputations have been elective. Although the arguments for my choice have been, I think, sound (and widely explored in previous blogs ad nauseam, sorry about that), it doesn’t change the fact they are monumentally huge risks - failure to surgically deliver below-knee amputations and maybe need higher up the leg, failure to heal, failure to take to prosthetics, failure to use prosthetics with any regularity or robustness, etc.

We are fortunate that the first step has gone unexpectedly well (explored in blog #17 coming up next) but there is still a huge way to go and huge number of things which could go wrong. I just have to trust to the process. I think I’ve made my peace with that. For now.

I want to thank everybody who came out to the #GoodbyeLegsRide last Sunday 27th April. The weather Gods smiled on us and unleashed the best sunshine we’ve had in several weeks (kicking off a week-long mini heatwave in UK) and I’m delighted that nobody crashed or crashed into anyone else or especially disrupted the many people enjoying the sun down on the quay and bike path.

About 50 people came down on bikes of all sorts - including cargo bikes and at least a handful of enthusiastically-manoeuvred balance bikes - with a further 10-20 people on foot to wave us off. Some people came from as far away as Sheffield and Hull. Some people had no connection with me whatsoever but heard the BBC Devon slot, stalked the posts through cyberspace, discovered the plan, and decided to come along. In keeping with the Goodbye Legs theme, many signed the ‘book of condolences’. BBC Spotlight filmed the ride (handlebar go pro, mobile camera, full rig, and a drone!) and we watched it that evening on t’tellybox. (You can watch it here)

Thank you everyone for coming, enjoying the ride, and playing nice. Donations have continued to grow since the event, and will hopefully continue until I shut down the donations page (http://www.justgiving.com/crowdfunding/goodbye-legs) on 31 May.

It was a remarkable day, not only for the weather, and bringing together all sorts of people from all over, but because at least a handful of people I spoke to said it had triggered something within them. It is so rare that we stop to smell the daisies, and even rarer to do so from a saddle, because we are so often preoccupied with the commute, or the rapidly disappearing peloton ahead, or your wattage, or heart-rate, or destination, or desperate grasping for a bit of release. Many people (and I’m one of them) said they genuinely could not remember the last time they had gone on a bike ride to go on a bike ride. With no plan or urgency or target in mind. Just a peaceable ambling under the vaulted sky. No traffic, no intensity, no restriction - just blissfully being the simple act of pedalling. An unexpected bonus for us all, I think, and one I will remember for a very long time.

In the days since the #GBLR I have tried to individually thank everyone who came (mostly successful) sift through all the pictures and videos from various sources (mostly unsuccessful) and try to catch some rest among the overlapping responsibilities of daily life. I had a Trustees Away Day for the Devon and Exeter Institution the day before the ride, a day of medical appointments the day after, followed by another Trustees Away Day for Exeter City of Literature the next day, and then a very long and full day of work catching up on work from that day ‘off’. Thankfully, I have at last managed to carve some rest out of this weekend, and also begun the next phase of pre-surgery preparations.

I was recently put in touch with a very good Wound Management expert in the hopes they might be able to give us some tips on post-amputation healing for someone who doesn’t have any subcutaneous fat. She was extremely positive, and I have now added a Red Light device and collagen, Vit C, and Zinc supplementation to my arsenal. My daily medical/health interventions, practices and appointments have now reached almost absurd levels and take up so much time I should be able to claim them as a full-time job, but it won’t be forever. Post-op there will be an obvious reduction in certain things (although admittedly the addition of several new ones). But life goes on.

There was an extensive and quite poetic paragraph here (I promise!) about how as the ops loom I have found myself redefining what I feel is important, and what I have capacity for. It’s a curious thing, you develop this kind of Concentrated Living that isn’t necessarily ambitious or impatient or urgent - just absolutely focussed. And if circumstances do not fall within those boundaries, they are cut loose, immediately. There’s no negativity or bad blood, just gone. Better, or different, priorities have been made. I deleted it because I felt it might be potentially misconstrued, but find I’ve actually just replaced it with the above, less satisfying, less well-written para. *grumble*

I don’t think there is anything else to say, for now. 21 May is the date for amputation of my Right leg. The Left will come off at some indeterminate date in the future, once we’ve evaluated healing progress of the first amputation. That’s two-and-a-bit weeks to catch up on recovery and bolster my general health and the op site with all the exercise, healthy diet and supplementation, massage, Red Light Therapy and sleep I can fit in.

Thank you again to everyone who has supported the #GBLR over the last 7 weeks, either through attendance, donating, sharing or all the above. Please do keep liking/sharing/commenting on any posts you see - it all helps, and we have over 3 weeks left to come. I’m not sure if I’ll write here again before the op or not, but certainly post-op you’ll see more social posts (Tom’s out of surgery, he’s fine type thing), and maybe a post here too. I’d be grateful if you could help that extra wave of social attention along, to try and pick up those last few donations.

Thanks for reading.

Quick Summary below. Full explainer further below!

They’re going to cut my legs off, so I want one last ride with them before they do.

Sunday 27th April, meet at Exeter Quay at 10am.

Very very easy pan-flat cycle along bike path (children, elderly, unfit, welcome) to Double Locks pub, or Turf Locks pub. Numerous opportunities to buy coffee/cake for yourself there or back at quay.

No costs/fees/charges. This is just a goodbye ride for my legs. But if you want to, donations gratefully received on the JustGiving page - with all monies going to 4 charities important to me.

Please feel free to share/broadcast widely: https://justgiving.com/crowdfunding/goodbye-legs

And now the full explainer, for those who want to know more:

They will be amputating my Right leg on 30 April. It may be postponed if an emergency patient comes in, but that’s the plan. Amputating the Left will follow some weeks later. I’m not sure exactly when, as it depends on healing rates, how the first op goes, etc. But I am sure that giving up a leg merits some sort of send-off. You only really get to amputate limbs once, after all. Cycling has been a big part of my life for a big part of my life, so it seems appropriate to try to squeeze in one last ride with my own legs. Fancy coming?

Jens Voigt is a famous ex-pro cyclist notorious for his self-admonishing catchphrase “Shut Up Legs” to get the most from his pedalling performances. I’m going one better and shutting my legs up permanently. (We’ll overlook the potential for phantom limb pain for now). As such, allow me to introduce the Goodbye Legs Ride. (cue fanfare).

So here’s the deal… on Sunday 27th April 2025 I will be sitting on a bench in Piazza Terracina, Exeter Quayside at 10am. Soon after, I am going to have the gentlest of snail-pace sociable pootles on the bike path down to the Double Locks pub. Potentially continuing on to the Turf Locks, if the weather is good (It’s UK Winter/Spring remember). Whereupon I will feast upon caffeinated beverages and an assortment of indulgent pastries/cakes. Then I’ll probably meander back. Possibly for additional coffee and cake, or even ‘real food’ on the Quay. (I take refuelling v seriously). That’s about 3 miles in total if we go to DL, or 10 if we go to Turf. It is pan flat. Wrap up warm.

All are welcome. However faint, tenuous, or fabricated your relationship or connection to me, or my legs. This is deliberately a barely-above walking pace social ride, on a bike path off the road, to enable people to come with their littlest and most unbalanced offspring, or their most wizened and apprehensive elderly relations. There is no ‘route map’ or plan, as there is no insurance. This is not an organised ride. I am just very reasonably indicating my possible movements as a free citizen that day and if we should happen to bump into each other, well how lovely that would be.

There is no obligation whatsoever, but if you felt emotionally overcome by sentiment, or wanted to contribute in some way other than attendance, please consider donating to the event’s Just Giving page. 100% of any money at all goes to the 4 charities below, split equally 4 ways 25%.

The Devon Air Ambulance Trust

June 1st 2025 will be the 20th Anniversary of when I was airlifted to the RD&E by the Devon Air Ambulance following a, you guessed it, bike crash. I died twice in the helicopter, en route, and wouldn’t be here today without them. Needless to say, we only have the option of amputating legs because they kept me alive in the first place. They receive no Government funding despite being a key part of the region's emergency response.

Wheels for Wellbeing

Everybody deserves to experience the joy of cycling (and its associated mental and physical benefits). Sadly, many people with disabilities never get to. WfW have a fleet of non-standard cycles to enable everybody to wheel, whatever issues they may have. Alongside the sessions they offer, they are an established and growing authority on #ActiveTravel, #InclusiveCycling, and planning/infrastructure/access issues. (Full Disclaimer: I am now MarComms Manager for this charity)

Exeter UNESCO City of Literature

I am a lifelong bookworm and feel reading, and education, are fundamental Human Rights. Exeter UNESCO City of Literature offers a jam-packed programme of events to promote reading, literature, and the arts to people of all ages within Exeter and the region. (Full Disclaimer: I am also a Trustee for this charity)

The Devon and Exeter Institution

A hidden gem within the city, this historic library and educational charity preserves so much of the region’s cultural, and historical impacts while also encouraging a love of literature amongst people of all ages. They offer tours, research spaces, and wide variety of social and cultural events right on the Cathedral Green. (Full Disclaimer: I am also a Trustee for this charity)

Thank you for your interest in this event, and your donation if you have done so.

I’m really looking forward to seeing you all and making this last ride with my own legs memorable. Please share this page so we can raise as much as possible for charity.

Any questions, please don’t hesitate to contact me via one of the many options at https://linktr.ee/tomstaniford Similarly, if you are a brand/company and want to get involved and have any clever ideas for raising additional coverage or sponsorship for these charities, please don’t hesitate to contact me.

Thanks for reading.

T