Finally have an answer
I went to see Mr W. at the rehabilitation clinic to find out whether he would be willing to perform the amputations. The last 2 months leading up to this appointment have been emotional. I just kept thinking about what he would say and if he would agree. Not knowing whether to make plans just in case he said yes. If he said no then I know I would feel depressed but annoyed as then I would have to go back to Mr R at Chelsea & Westminster to discuss my next move, and possibly end up having a triple arthrodesis, which I do not want. If he said yes then I would be having my legs amputated which in itself (although it is what I want) is going to be stressful and slightly terrifying.
So on we (my wife and I) went on the 3 hour journey to Roehampton by bus, tram and train. We have to go the long way round so that we can use the wheelchair accessible stations (come on Boris!), which is a pain as it adds over an hour to the journey. The bus we got from the train station was an old bus and the wheelchair ramp on it was bloody steep and there was a massive lip at the top, I wouldn't have been able to get on by my self luckily I had my wife to help. But when I got off, fucking hell I realised how steep the ramp really was, nearly crashed into the wall opposite. After nearly breaking my legs we arrived and we were waiting to be called in, I had all the outcomes of this appointment flying though my head. Luckily we didn't have to wait too long till we were called and were told to wait in a treatment room and Mr W. would be with us shortly. We weren't sure how long he would be and to be honest I have no idea how long we were waiting as my wife distracted me with a flowchart of some of the main reasons why amputees have pains in their stump and the options to help the problem. Which is reassuring but terrifying as the options ranged from physio to surgery, fingers cross I don't encounter the latter. I took my wheelchair gloves off and my hands were clammy, so my wife quickly got me some anti-bacterial rub which didn't help too much, but at least they smelt a bit nicer. After a few minutes Mr W. and two others (including the new Consultant in Rehabilitation) came in and despite what happened last time I saw Mr W., he didn't seem rushed and he spoke to me about the procedure and rehabilitation making sure I understood everything that came with having no lower legs. After a brief examination of my lower limbs, and without having to take off my trousers this time, he decided that he would be happy to perform the surgery. What a bloody relief that was. I was (and still am) incredibly happy with that result. Now to plan from now until the operation.
We then discussed whether I would want one leg off at a time or both. This is something which I have been pondering for the past month or so. Every operation I have had on my feet, I have always done both feet at the same time as personally I would rather get it all out of the way, even though the pain will be double and the whole process will be harder. For me though it is easier compared with going through it all with one foot and then doing it all again with the other. The amputation is no exception. So yes it will be a hell of a lot harder, as when I am learning to walk I wont have a leg to stand on (excuse the pun), but if I have one off at a time it will be harder, in my opinion.
For some they have a 'good' leg, so they may choose to have the worse leg off first. My problem is my feet are equally bad, so if I had them amputated one at a time, while learning to walk I will be relying on my non-existent 'good' leg, the only problem is that my ankles tend to buckle under my weight and I cannot risk this happening during my rehabilitation for obvious reasons. Even if that didn't happen and I started to learn to walk with one prosthetic, I am still then going to start the process again on the other leg, which comes with its own risks as all surgeries do, and then learn how to walk with two prosthetics which will add more time to my recovery. So I would much rather get it all out of the way in one go, which Mr W was happy to do. He said that if I do change my mind to let them know and it can be arranged, I will then have to decided which one I like less.
He has said that it will be treated as two operations. So once he has successfully removed the first leg, if the anaesthetist says it ok to carry on he will remove the second leg which will bring the surgery time to 3 hours. The operation will be performed at Kingston, I won't be moved over to Roehampton until after a week-ish post-op (as long as I am recovering well). I will be having an epidural and it will be kept in for 3-4 days after the surgery, so I will be bed bound during that time. Then if all is well I will be transferred over the Roehampton to start my rehabilitation.
It has been two years since I decided that an amputation would be my best option and give me the best way of life possible. It has been a long two years, full of tears, laughter, a hell of a lot of research and a load of hospital appointments, but I am finally where I want to be. It still seems mad that I am choosing to have my legs cut off and it hasn't quite sunk in properly.
Next step is to tell the family. I have a big family, some of which can't properly understand English (they are Greek) so I think I will need my Dad to hand as a translator, and I am sure there will be tears all over the place. But I am hopeful that I will be able to get them to understand that this is what I want and I am happy and weirdly excited about it all.
So on we (my wife and I) went on the 3 hour journey to Roehampton by bus, tram and train. We have to go the long way round so that we can use the wheelchair accessible stations (come on Boris!), which is a pain as it adds over an hour to the journey. The bus we got from the train station was an old bus and the wheelchair ramp on it was bloody steep and there was a massive lip at the top, I wouldn't have been able to get on by my self luckily I had my wife to help. But when I got off, fucking hell I realised how steep the ramp really was, nearly crashed into the wall opposite. After nearly breaking my legs we arrived and we were waiting to be called in, I had all the outcomes of this appointment flying though my head. Luckily we didn't have to wait too long till we were called and were told to wait in a treatment room and Mr W. would be with us shortly. We weren't sure how long he would be and to be honest I have no idea how long we were waiting as my wife distracted me with a flowchart of some of the main reasons why amputees have pains in their stump and the options to help the problem. Which is reassuring but terrifying as the options ranged from physio to surgery, fingers cross I don't encounter the latter. I took my wheelchair gloves off and my hands were clammy, so my wife quickly got me some anti-bacterial rub which didn't help too much, but at least they smelt a bit nicer. After a few minutes Mr W. and two others (including the new Consultant in Rehabilitation) came in and despite what happened last time I saw Mr W., he didn't seem rushed and he spoke to me about the procedure and rehabilitation making sure I understood everything that came with having no lower legs. After a brief examination of my lower limbs, and without having to take off my trousers this time, he decided that he would be happy to perform the surgery. What a bloody relief that was. I was (and still am) incredibly happy with that result. Now to plan from now until the operation.
We then discussed whether I would want one leg off at a time or both. This is something which I have been pondering for the past month or so. Every operation I have had on my feet, I have always done both feet at the same time as personally I would rather get it all out of the way, even though the pain will be double and the whole process will be harder. For me though it is easier compared with going through it all with one foot and then doing it all again with the other. The amputation is no exception. So yes it will be a hell of a lot harder, as when I am learning to walk I wont have a leg to stand on (excuse the pun), but if I have one off at a time it will be harder, in my opinion.
For some they have a 'good' leg, so they may choose to have the worse leg off first. My problem is my feet are equally bad, so if I had them amputated one at a time, while learning to walk I will be relying on my non-existent 'good' leg, the only problem is that my ankles tend to buckle under my weight and I cannot risk this happening during my rehabilitation for obvious reasons. Even if that didn't happen and I started to learn to walk with one prosthetic, I am still then going to start the process again on the other leg, which comes with its own risks as all surgeries do, and then learn how to walk with two prosthetics which will add more time to my recovery. So I would much rather get it all out of the way in one go, which Mr W was happy to do. He said that if I do change my mind to let them know and it can be arranged, I will then have to decided which one I like less.
He has said that it will be treated as two operations. So once he has successfully removed the first leg, if the anaesthetist says it ok to carry on he will remove the second leg which will bring the surgery time to 3 hours. The operation will be performed at Kingston, I won't be moved over to Roehampton until after a week-ish post-op (as long as I am recovering well). I will be having an epidural and it will be kept in for 3-4 days after the surgery, so I will be bed bound during that time. Then if all is well I will be transferred over the Roehampton to start my rehabilitation.
It has been two years since I decided that an amputation would be my best option and give me the best way of life possible. It has been a long two years, full of tears, laughter, a hell of a lot of research and a load of hospital appointments, but I am finally where I want to be. It still seems mad that I am choosing to have my legs cut off and it hasn't quite sunk in properly.
Next step is to tell the family. I have a big family, some of which can't properly understand English (they are Greek) so I think I will need my Dad to hand as a translator, and I am sure there will be tears all over the place. But I am hopeful that I will be able to get them to understand that this is what I want and I am happy and weirdly excited about it all.
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