It’s something that everyone wants to know, and it’s something that I ask myself every now and again too. Please excuse any graphic photos, there won’t be many but I know that some of my mediciney friends would want to see them and some of them are pretty impressive! (The toe one is pretty grim I know…)
It’s hard to explain in one line, so if you think you already know, but what you think is different to what you read here, I’m sorry. It may be that I haven’t been able to explain it properly to you, or that you’ve interpreted it differently. People hear what they want to hear and as soon as someone has an idea, they generally stick to it. The two most commonly believed are that I had a skiing accident or fell down the stairs – both quite likely but neither actually happened and often it is more hassle than it’s worth trying to explain what really happened (and I have been known to just go with it and not bother correcting people).
I was born a few months early with bilateral talipes equinovarus/clubfoot (http://www.steps-charity.org.uk/How-We-Help/a-guide-to-talipesclub-foot.html) and a hole in my heart. I had a little bit of surgery on both feet as a child and at 16 was discharged from Great Ormond Street “cured”. I then had a few minor fractures in the fourth metatarsal of my right foot (RIP) that came about from silly things – stepping on a stone, someone falling on my foot when skiing with school etc. but they seemed to heal up and none of us thought any more of it. After finishing school, I went to work in Italy for the summer and half way through the season got a big fracture in my fourth metatarsal and was sent home. Three months later, the break still hadn’t healed so I saw a consultant and he told me that it was due to the residual deformity and that I’d need surgery to stop it happening again. He could break some bones and fix them in a different position, or the more “elegant” option was that another surgeon could break the bones and put on external fixator for six months and this would allow a more precise correction and, at the time, everything pointed to this being the far superior option. That six months in a Taylor Spatial Frame is a story in itself and I’ll save that for another day, but kudos to anyone with a frame on – it’s really frustrating being totally non-weightbearing for six months and the moving the broken bones around was pretty painful, but I was fine with it at the time because it was a means to an end and, in my head, after six months it would be off and everything would be sorted, then I’d carry on with my life – no biggie.
Then the frame came off. I was over the moon. However, four months on from there and I could hardly walk. It didn’t matter how much physio I had or how hard I worked, nothing was improving. A couple of operations later and still nothing had changed. A few more operations and a few more years and things were no better – maybe even worse. I couldn’t get through the day without heavy painkillers and struggled to walk without a crutch. The pain affected everything – all the things I used to love became a struggle. I had taken life without pain for granted. My new normal was waking up and thinking I don’t even want to stand up today. But you have to. You have get on with it. That’s no way to live and a bad position to be in at 22, but I struggled on.
Fast forward four years and the frame had severely damaged the joints in my midfoot, ankle and toes. I’d seen a variety of the best foot and ankle consultants in various parts of the country, but no one could offer any solutions. A weight bearing CT scan at RNOH revealed the problems more clearly and a few more operations proved that nothing really could solve them. I then found another doctor, one who was willing to treat me as a human being and not just a foot that looked alright from the outside, and he spent hours listening to me, going through everything and trying to find a way forwards. He organised a case conference with the Trauma and Orthopaedics department and then after some diagnostic injections to see if fusing a few specific joints would help, we all agreed that amputation was the best way forwards.
The decision to amputate is undoubtedly a big one, but quite a straight forward one in my case. I’m sure that for other people, in other situations, at different stages of their lives, the decision may be rather more complicated. However, it was totally clear to me that if I wanted to lead the life that I planned on leading I had to have it amputated. I couldn’t live a life without sport – without skiing, without running and without being able to push myself physically. So despite the risks, it was a complete no brainer. I’d been through far too much to just give up and accept such a poor outcome. Just getting by wasn’t ever going to be enough for me so I made the decision to amputate it, let go of the past and move forwards.
Of course, in my life, nothing is ever that straight forward and making the decision and signing the consent form were by far the simplest bits. Finding a way of telling people was incredibly hard and then the six months leading up to the operation were a total joke that included being on the waiting list of my ex-surgeon – the one who left me like this and had refused to even discuss amputation (it’s still a mystery what he was planning on doing in that operation when I hadn’t spoken to him, or even made any form of eye contact with him for a year – I was angry at him for what he’d done without even acknowledging it, and I guess he was angry at me for going any finding another dr or something. Basically we weren’t on good terms.), then the number of orthopaedic beds had been greatly reduced at the hospital where my surgeon works, and theatre time for elective orthopaedic surgery had been massively cut there, so there were no beds and no date, leaving me in a horrible state of uncertainty. I was working in Crete at this point and trying to deal with an NHS trust (whose waiting lists, referrals etc. could never, ever be described as transparent) whilst abroad is tricky. After a lot of fighting (initially with the admissions team but then through PALS and then, as a last resort, the chief executive) I was given a date. Looking back, I cannot understand how I was left in the position where I had to write to the chief exec of the trust to try and push it forwards?! This had been unbearable. After making the decision to have my foot amputated. After the last six years of shit. After trying to be the mature one and not making a fuss about any of it. But eventually he got things moving, it was sorted and I was given a date! Then it was cancelled, obviously…
However I was incredibly lucky that finally I had someone on my side who would help with the fight. I am utterly privileged to have the surgeon that I have now, a man who really is most incredible human being I’ve ever met, and he got it sorted. Continuing the trend, the morning of the operation couldn’t really have gone any less smoothly – I get there and no one is expecting me… Sent from ward to ward until my doctor came along and sorted it out, then a good 6 hours in recovery post-op waiting whilst they argued over where I was going to be sent. (During which my epidural was accidentally knocked out, then they wouldn’t put it back in until I demanded that the anaesthetist come and explain to my face why she wouldn’t do it. They took me back in and did it within about ten minutes…)
Rehab has been a breeze in comparison.