Right so where to start, I guess with the outcome because why not and that is that I am booked in to have radiotherapy on the week commencing the 21st of May.
So the appointment itself, despite traffic issues we turned up on time and were seated in the "waiting room" which looked very much like a cafe to me. Still we were only waiting 5 minutes and I was shown through by Dr Shaffer, at first I thought he was being a bit mean as he was rushing off to a corner and then looking back and then rushing off but turned out that he just wanted to check how I was walking. Not great!
I was then seated and as expected he went through the usual routine of asking about all of the predisposing factors and he did cover all of them (No, No, No etc from me) and he then had a look. Firstly he looked at my hands and then my feet and as expected the only thing he could see was the big nodule in my left foot, phew. I then sat back down and we went through the details of radiotherapy and he discussed the risks of minor side effects and that of course radiation does mean that there is an increased chance of cancer especially in someone so young.
We then discussed times and came up with 3 weeks Monday as this was the earliest we could both do and he just needs to check with the hospital who will then confirm with me and that was it, a nice good bye and a hand shake and the 15 minute meeting that we drove 2 hours for was over.
The meeting was great for me, it went exactly as planned, it was really nice, and he seemed to really know his stuff and was quoting statistics that I knew from here and reading my text book were correct. Unlike some of the other people I have seen he also had a really nice manner, he was happy to comment on personal things as well and asked about my British Dupuytren's Society top and asked about Henry Orton whom I interviewed for here and he asked about my wife doing the runs to raise money and asked us to keep him updated.
I am also looking into getting disability living allowance as my problem is severe enough and persisted enough to make me think that I should be suitable to get it. One of the questions it asks is your walking pace, to judge this fairly I went the gym with my wife so I could walk unaided on the treadmill whilst my foot hurt. My foot hurt because it was prodded and I had to do some walking and standing. The answer was that I was just about doing 1.2miles/hour which by my calculations is 32.3metres/minutes. To put this in context that means I would walk only about 2km per hour and so unaided I would take 2 1/2 hours to do the 5km that the people who were walking and handing out leaflets only took 55 minutes to do. I am quicker with the stick and at the start of the day when I am not in as much pain.
So the appointment is good. Just to note that my number of posts will probably drop off a bit now, this is because I have covered most of the topics that I wanted to cover on here and so I will only be updating it with my news and any Dupuytren's or Ledderhose news that I might come across.
Perhaps also to vent on bad days, well really bad days as every day is a bad day at the moment and I am really struggling to cope.
So the appointment itself, despite traffic issues we turned up on time and were seated in the "waiting room" which looked very much like a cafe to me. Still we were only waiting 5 minutes and I was shown through by Dr Shaffer, at first I thought he was being a bit mean as he was rushing off to a corner and then looking back and then rushing off but turned out that he just wanted to check how I was walking. Not great!
I was then seated and as expected he went through the usual routine of asking about all of the predisposing factors and he did cover all of them (No, No, No etc from me) and he then had a look. Firstly he looked at my hands and then my feet and as expected the only thing he could see was the big nodule in my left foot, phew. I then sat back down and we went through the details of radiotherapy and he discussed the risks of minor side effects and that of course radiation does mean that there is an increased chance of cancer especially in someone so young.
We then discussed times and came up with 3 weeks Monday as this was the earliest we could both do and he just needs to check with the hospital who will then confirm with me and that was it, a nice good bye and a hand shake and the 15 minute meeting that we drove 2 hours for was over.
The meeting was great for me, it went exactly as planned, it was really nice, and he seemed to really know his stuff and was quoting statistics that I knew from here and reading my text book were correct. Unlike some of the other people I have seen he also had a really nice manner, he was happy to comment on personal things as well and asked about my British Dupuytren's Society top and asked about Henry Orton whom I interviewed for here and he asked about my wife doing the runs to raise money and asked us to keep him updated.
I am also looking into getting disability living allowance as my problem is severe enough and persisted enough to make me think that I should be suitable to get it. One of the questions it asks is your walking pace, to judge this fairly I went the gym with my wife so I could walk unaided on the treadmill whilst my foot hurt. My foot hurt because it was prodded and I had to do some walking and standing. The answer was that I was just about doing 1.2miles/hour which by my calculations is 32.3metres/minutes. To put this in context that means I would walk only about 2km per hour and so unaided I would take 2 1/2 hours to do the 5km that the people who were walking and handing out leaflets only took 55 minutes to do. I am quicker with the stick and at the start of the day when I am not in as much pain.
So the appointment is good. Just to note that my number of posts will probably drop off a bit now, this is because I have covered most of the topics that I wanted to cover on here and so I will only be updating it with my news and any Dupuytren's or Ledderhose news that I might come across.
Perhaps also to vent on bad days, well really bad days as every day is a bad day at the moment and I am really struggling to cope.
Am happy to hear that Radiotherapy has been arranged. What did he say about what improvement to expect?
ReplyDeleteSounds like things went well, that's good. I'm sure you've done the right thing. I wonder if you're the first UK patient with Ledderhose to undertake Radiotherapy? Keep a record, as I'm sure you will, so you, and 'we' have before and after results and the timeframe. Best wishes.
ReplyDeleteThanks to both of you.
ReplyDeleteHe said that improvement occurs in about 80% of patients so 4 of 5. That the main difference seen is a decrease in pain so fingers crossed.
I got the impression that he has treated Ledderhose patients before but maybe I am mistaken? I will ask when I see him next and I am sure to keep good records and I will share everything with the BDS.
Regarding the DLA. Get some advice from CAB before filling in the form. Its a huge form and scan it once filled so you remember what you have written.. And judge it on a bad day for you, which sounds strange but it really helps to put things in context.
ReplyDelete