Friday, 25 May 2012

My thoughts on being Radioactive man for the week and a ramble:


So I am now at the end of my week off from work for my radiotherapy treatment for Ledderhose disease in my left foot and I am already feeling a bit down about having to go back to work. This is not because I have to go back as I enjoy a lot of the work and I find it interesting but I know that as soon as I start working again my foot is going to kick off. I know that because on the occasions this week when I have had to walk my foot has still hurt but I am of course hoping that perhaps over the coming weeks my job will become less of a problem and more fun again as my foot hopefully heals.
I have now had my entire week course and although I was not expecting anything to happen immediately it is still sort of an anti-climax, even more so when you have people asking you if your treatment is work and you sort of have to shrug your shoulders and say “I don’t know”.

This week has been pleasant and has shown me just how great the gap between private health care and NHS health care can be and I can say that I feel like I have been treated badly over my Ledderhose over the last 2 ½ years on the NHS. They have been slow, they sent me for physio just to be told they can’t help, they discharged me 1 month after I had a steroid injection and had said it had helped a bit when everyone knows it is only temporary and I then had to wait ages for another appointment. One of the people I saw, probably all actually, of the NHS foot specialists knew less about this disease than me. Ok so they have to look at more than one problem but knowing that I am coming in and apparently dealing with several cases a month of this, you would think that they would know their stuff better than someone who blogs on it. Another thing that happened today which annoyed me. I was in the little cafe waiting for my wife to pick me up and whilst waiting this little old little was calling out "excuse me" and the waiters ignored her, the doctors and nurses ignored her, it was clear what she wanted, I hobbled over and she said "oh thank you, you saw me struggling did you?" I said yes and then opened her bottle of water. That was all she wanted and 20 or so people who aren't using a stick to walk around and that weren't 20 metres away could have done it, several people walked straight past her and why didn't they do it? Who knows? 

Anyway I digress what does that matter as this week has been great, in fact the whole experience with Dr Shaffer has been fantastic and I just hope that in the coming months I see some improvement and even if I don’t I would not blame Dr Shaffer or the team at the Royal Surrey Hospital who have all been fantastic from the start, thank you.

I would love to meet up with some more people who have Ledderhose in the UK, ideally down south of London, Brighton way which is near where I live. I have never met another Ledderhose patient, well with the exception of the lady this week who has Dupuytren’s and is developing Ledderhose. It would be nice to meet another patient who is or has been at a similar level to me and compare notes, everyone always says that this thing is different in different people and I just wish there was more that I could do for the Dupuytren’s and Ledderhose community.

Right well this post is turning out to be much more disjointed than I would have liked but it is my blog so hey. I must say that if you decide to have radiotherapy with Dr Shaffer and you live more than a 2 hour commute away then try and stay in the Travel Lodge or something (though it was the worst Travel Lodge I have ever stayed in so maybe try the Holiday Inn if you can afford it). I am on the last day of this week and I am exhausted, you would think that sitting on a bus, train, at a platform, train again and then a taxi would be easy after all you are just sitting there. I don’t know if it is because my appointment have been at 10am so I have had to get up at 7am to leave 7:30am so my body is waking me up at about 5am every morning going “don’t be late, can’t be late” and I think I am going to make sure they give me later appointments next time. Equally it could just be all the travelling. For those not in the UK we are having a “heat wave” which for those that don’t live in the UK this means anything above 20oC and sitting on all of those methods of transport with their large glass windows is not that great in that heat. Then again maybe it could be the fact that I am getting whacked with radiation on a daily basis and that is not exactly that much fun so what can you do about it other than hope that it is going to work?

As I have said before the actual process of having the radiotherapy has been wonderful and sitting among cancer patients you realise just how lucky you are to just have a lump in your foot. One thing that I do feel unlucky about is my age. All week I don’t think I have seen anyone under 40, a couple under 50 and most are over 70 years old and I am just 25. I can’t be feeling sorry for myself, as I just said most people in the centre have cancer but at the same time I wonder, why have I got this disease at such a young age? Not the youngest I have heard of but much below the average for this and Dupuytren’s.

So how is my foot feeling? Well as I have already alluded to it doesn’t really feel any better. Earlier on in the week I thought the lump might be getting smaller but I think that was in part hope and in part me being off of my feet so much that any increase in size that could be caused by inflammation or whatever was not present. Fingers crossed that I see some change in the coming weeks but I doubt that I will be back on the badminton courts any time soon. Certainly rubbing the E45 in hurts. 

In fact this week, in particular towards the end of this week my foot has had a kind of dull ache. Not the same kind of pain that I had before treatment but something else, anyone else had this kind of thing after radiotherapy for these diseases?

I will of course keep everyone updated of my progress and in all likelihood will be back here early next week to complain about being back on my feet again.

Thank you to everyone who has supported me this week. I don’t just mean the Dr and staff at the hospital but also to the friends and family that have been sending me nice texts or giving me a lift or whatever. The texts to keep my company on the 5 hours of public transport that I was enduring were very much appreciated.  

J