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.
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