The Light Thingy!!

Hi gang, hope you’re all okay.  But in saying that you can’t be all that alright as you are reading this ha ha!!

Remember I have been talking recently about this new Light Treatment for my GVHD problem well I am finally getting round to doing some research on it in preparation for my next visit to see Merlin next Monday.  The Treatment is actually called Extracorporeal  Photochemotherapy.  If you can trawl through the jargon you can read a pretty concise explanation of it here.  It is quite long winded though.  The interesting part is the success rate which is around 85% and in my humble opinion not to be sneezed at!!.  Unfortunately there is always the small matter of finance because as I have said there are only 6 machines in the UK, none of which are in Wales, the nearest to me would be Birmingham.  They did shock me a little when Merlin came and told me that they were thinking more about buying their own machine and training staff to use it rather than just sending me off to wherever I could get the treatment from for example Birmingham.  The other main advantage of this treatment you will notice is that as far as I know this is the only DRUG FREE alternative available as a recognised treatment.  Well I think after all this time of willingly being pumped full of whatever pill or potion they thought would do the trick I deserve a drug free chance.  After all there is always the same chance that the drug alternative will not work and seeing as the Steroid and Cyclosporine approach which is considered as the Text Book approach to the treatment of GVHD hasn’t worked this just makes me think that the change of approach might just do it.  on another point if there is a certain element of it that is psychological then I’m sure that giving me this chance will have a lot more chance of working as I am feeling quite positive about it.  The whole process is pretty strange as it seems that just by shining some light on your blood can stop all this nasty GVHD is mind boggling although I know I have over simplified it but this is the bottom line after all.  

I’ve not found out quite yet where all these 6 machines are although the ones I do know are, there is one in Ireland, One in Birmingham and one at Guy’s In London as they showed this on City Hospital the other week.  This is the only machine apparently that is run by the Molecular Dermatology Department whereas the rest are all Haematologists.  I’m hoping that over the next few weeks or so I can gather some more useful information on this from maybe contacting the hospitals / departments directly.  So my plea to you all is that if any of you have any influence or friends in these areas that I would appreciate any help or info you are able to get.  Maybe your aunty Bella’s cousin drinks with the receptionist in the dermatology department, you know the kind of thing ha ha!!

Okay then back to normal, non grovelling jonny5.  I can’t seem to really get rid of this wheeze.  It never actually goes away for long although each day it seems to be a bit better.  I seem to be sleeping a little better which is good too.  Only getting around 6 hours or so and always ALWAYS wake up at bloody 6am thanks to the hospital.  I must say though it isn’t my chest or breathing that eventually wakes me up it is usually my bladder.  It makes sense when you think about it as it is fighting along with everything else for room in the inn so to speak.  

Physio has started albeit slowly at first.  They have decided to start off gradually by doing lots of chair exercises and will build up to doing some walking when they are a bit more confident that they will not have to pick me up off the floor.  I have noticed the last day or so that getting out the kitchen is a lot easier than it has been of late and I am not out of breath as much when I do sit out there.  This had caused some mixed reactions from both Judith and Tara.  Tara is really happy as she can now have nice tasty food and not necessessarily good for you and not the Microwave stuff she has been having.  Judith on the other hand has said that she has put on too much weight recently so all the good food I tend to cook is not really diet friendly.  I see her point as I do tend to use a lot of butter and suet and all things fatty really.  I shall have to try and control myself I think or else I will be cooking and eating on my own ha ha!!  I think I started off on the wrong foot mind you, cooking leeks in a cream sauce with pan fried salmon steaks, well the salmon is quite good for you isn’t it?

Okay then off for more surfing.  See Ya later.

See Ya!!