12. Cutting Insights

They're cutting my legs off, really quite soon, and I have to choose the order. That’s a sentence I never thought I’d say. But the reality is, I’m voluntarily (admittedly, under some duress) choosing bilateral amputation so have the luxury of choosing to ‘do’ both at the same time, or sequentially. And if sequentially, which lucky limb gets to go first? The ‘soon’ aspect, I’ll get onto in a bit.

Why amputate anyway? Mobility, pain, crumbling bones, paralysis, infection avoidance, all of the above. Much more on this in previous blogs here and here.

Double or nothing

The benefits of amputating both legs at the same time:

• Shorter total rehab time. If recovery takes 3 months (I’m throwing out very vague figures here), that is shorter than 2 rounds/legs of 2 months recovery each = 4 months. Doing both at same time will mean more recovery time is required than just doing one, because the body only has so much recuperative power available, but is still in total less than 2 individual surgery recoveries.

• Less recovery time needed, so a quicker return to work. Because I’d like to be able to afford food. I’m increasingly concerned by the financial costs of being out of commission. Alice earns very little. I will be limited. There isn’t a buffer.

• Once legs are healed, the physio, prosthetic journey, learning to walk etc can be carried out in a balanced, and measured manner focussing on both legs. Better holistic outcome, no imbalances or compensations. Also, one learning period with prosthetics. Not 2.

• No tricky choices of which leg to do first. They each have their own issues.

• Not a personal liability due to the wonders of the NHS, but costs. If an amputation costs £65k (making up numbers here again), 2 amputations is 130. If we do both in the same surgery, some costs will be shared, so maybe 90 or 100k. That’s 30k saved for the NHS. Plus the savings on two programmes of physio, painkillers, wound care appts etc.

Benefits of amputating sequentially/individually:

• although longer total rehab time, less disruptive. Still have one leg available for (somewhat unsteady) support/pivoting, making transitions from wheelchair to car/bed/sofa etc easier. Will also be more independent, so less demand on Alice emotionally and also her time for work. Because we need her wage. Except this is just for the first amputation. The second will be much like if we’d done both at same time. So it’s a false economy, isn’t it?

• One leg lets me adapt emotionally/mentally to my new situation and a reconsideration if the experience is really awful. But, then, when I got the other done, another adaptation is needed to this new situation. So, er, false economy again.

• Managing one amputated limb is easier than 2. But, again, this only applies for the short period after first amputation. My body will be doing all it can to recover, regardless of one wound or 2, again, a false economy. This also means I won’t have ‘more’ mental capacity to work when healing 1 rather than 2 wounds.

Based on the above, I hope it’s quite clear why I’m leaning towards the ‘both at same time’ approach. A short hard(er) shock, but better long-term prognosis, I think. Better potential prosthetic adaptation, better walking, etc. But then…

The Plot Thickens

All surgeries carry risk. Thankfully very small ones these days. But as I collect frustrating conditions like a magpie collects silver, I have accumulated additional risks which complexify the above dilemma.

So here is the biggie: we don’t know if I will heal. Yeah, that’s right. Put that in bold text. It sounds somewhat absurd, seeing as we’re considering voluntarily severing limbs. But due to the tightness of my skin, lack of any subcutaneous fat, very limited muscle/flesh, diabetes, and other metabolic issues due to MDP syndrome, we don’t actually know if the wounds will heal fully. I’m quietly confident they will, as I’ve been in enough major bike crashes and done enough major lacerations to my knees and legs to think so. But I’m older now. My healing is not as good. And my neuropathy and circulation issues are more pronounced. So...nothing is certain.

From this perspective, cutting one leg off and seeing how it goes before doing the other seems like a pragmatic approach. Cutting off both and discovering one, or both, won’t heal means no prosthetics, means total wheelchair use, means worse off than I am now in some respects. Yet even in this dire physical situation, having lost the pivoting/transition benefit of legs currently, I will have regained all the time I currently have to give for orthotics, podiatry and wound management appointments for venous ulcer on right ankle of current rubbish legs.

BUT, just because one wound doesn’t heal is not a dead cert the other will not. My legs are different, they have marked differences in muscle, circulation, previous damage, etc. So the diagnostic/evaluative value of ‘one leg and see’ is compromised. Additionally, you might be removing that other leg anyway due to infection/damage anyway, even if the healing isn’t good, as a matter of urgency. Which was one of the reasons we entertained amputation in the first place, as a method of avoiding such infection issues.

AND, cut one leg off and it heals… do we do the other one immediately? Or do we, as is customary, get me into a prosthetic for that limb ASAP? While we’re doing that rehab, are we cutting off the other? Or wait a year to adapt to walking with new prosthetic, only to do the whole rigmarole again? What if that one then doesn’t heal, despite the first one doing so? I can see this process stretching out from 6 months to 1 or 2 years and, to be perfectly frank, I don’t think I can summon the requisite financial or mental resilience to voluntarily endure that long, in a state of perpetual instability.

All of which is to say, I’m leaning towards the drastic double. I am attracted to the idea of a clean slate. A distinct draw-bridge closure on my previous life, and a fresh start, all cards on the table, let’s see what we can do with what we have, approach. I’ve done a year now of lingering in limbo and I don’t want another 1 or 2. Let’s do it.

Phone A Friend

My nice surgeon, Dr Tom Hardy, has been a very good partner for the above discussions. He’s also now speaking to his multi-disciplinary colleagues, to pick up any perspectives we may have missed, and we’ll chat on next week and make a decision. The last week or two has been quite a strain because these discussions have suddenly made everything much more real. And then it got even more real… (are you enjoying these little cliffhanger segues? I feel like a screenwriter)

The Doctor Will See You Now

Much of my thinking about this over the last year, and in particular over the ‘much more real’ thinking over the last 2 weeks, has been accomplished in the context of knowing we had a waiting list to contend with. So whatever we decided, we had that nice buffer of 3-12 months (I’m making numbers up again) in which we could think more, and even pull out if we reconsidered. Turns out, there is no such waiting list.

Because many amputations are conducted on an emergency basis - either through accidents, or rapid gangrene/sepsis, or other desperate comorbidities - there is no typical waiting list, so to speak. This means if we decide, oh, we’re doing the surgery in 2 weeks, then we do it then. Obviously subject to NHS resources. And if somebody does come in following an accident, my non-emergency surgery is naturally bumped down the priorities and we reschedule.

How’s that for piling the pressure on? Admittedly, the pressure is 100% fabricated and of my own creation, because this entire process is voluntary and nobody has pressured me to do anything at all. But I can promise you the ‘realness’ factor goes through the roof when the gravity of your decision is made even more apparent. Do you really want this? Like, prepared to do it right now?

So here we are. I can essentially summarise #OperationAmputation as: voluntarily exchanging a pretty shit situation for the hope of a marginally less shitty situation, but risking a shittier situation. Having taken some time to try to be as well-informed as possible, and consider all eventualities, I think it’s a risk worth taking.

I’m really hoping I don’t come to regret those words.

Thanks for reading.