Wednesday, 24 October 2012

3 month radiotherapy follow up for Ledderhose


So today I had my appointment with Dr Shaffer and all I can say is that everything went pretty much as I expected, to quote him, “Radiotherapy has worked extremely well on your feet” and considering I had to quit my job a few months ago because of this (FYI still the right choice) “the change has been remarkable”. Much like I have said over the last few weeks walking has become easier and again to quote “if I didn't know the lumps were there I probably wouldn't be able to find them” and “they are much softer”. That was pretty much how the assessment went, we talked about monitoring progress and I will basically get a form every year to return to Dr Shaffer to say how I am going and as he said my blog will be a good source to keep him updated anyway. There is still a change for things to progress and get better but it is likely to be much more gradual and it may not  be directly because of the radiotherapy but because over the next three months I adapt my walking and start to increase my fitness again then things are going to continue to improve and I am already very happy with where things are.  

He also congratulated me on the pregnancy of my wife and I did likewise to him, he is expecting twins in December, and then we started talked a bit about patients, being contacted through websites and the possibility that I may now make a website using a domain name that he owns (www.ledderhose.co.uk) and he is willing to look at the content and the British Dupuytren's Society are going to help as well, talking to them about that now. The idea of this site will basically be to make a more formal version, an easier to follow version of the blog. Now this is conflicting slightly with the content of the British Dupuytren's Society but I feel it still has a place in the world wide web as many people looking for Ledderhose may not click onto a site that is talking about Dupuytren's and so perhaps this site could basically be focused on the treatments for Ledderhose and then the other content such as the details on risk factors and everything which is largely based on Dupuytren's information can go on the BDS site and would be linked to from the new site.

Overall I am thrilled with how this treatment has gone, Dr Shaffer spoke to me about a conference he went to where there were lots of Surgeons that do work on the hand and Dupuytren's and very few of them knew about radiotherapy, quite frankly this is crazy and I think that one of the first things that needs to be done, as I am sure everyone is aware, is not the education of the patients of the media but the medical professionals, this option is for most people surely a far far better options that getting bits cut out. I have spoken to many unhappy surgery patients but I have to really stretch my mind to think of a happy one whilst the complete opposite is true for radiotherapy but when I went to see the NHS specialists for these conditions not once was the option of radiotherapy mentioned and all I was told was to hold out for as long as possible before having surgery.    

So my  goal now is to write a few letters to various NHS people to see what their explanation is, is money really an issue for a condition which has so few patients and if that is the case why the ignorance on the part of the specialists about the treatment which should at least be discussed with the patients. At least from my own selfish point of view if I can’t convince them and it does return, should I still be with the same company, which is my intention, then I have private medical cover so will not have to worry about the expense and I will now where to turn to get the treatment.