Off To See The Wizard !!


Well as i had promissed earlier here is the details of my latest meeting of minds with Merlin. For one reason or another i haven't seen him for a few months now instead i have been seeing his lovely registra Thumberlina, (Rachel). I try to not think he is avoiding me although there may be an element of truth in that thought. After missing him yet again the week before Rachel suggested that it would be an idea to book a Clinic appointment rather than just waiting in the day unit for him to see me when i am up having my Immunoglobulins and that due to the pronlems i wanted to sort out with him, the sooner the better and am appointment was made for the following tuesday.

So the day arrived and we turned up the usual 15 mins early just in case!!!! but should have thought really that the way Merlin works he is running behind when he gets up in the morning, so a 4pm appointment means you are in for a long wait. The nurse who'd drawn the short straw for the day called me in to have my blood taken and was sadly met with a resounding "Get Knotted" although i was polite, but after being tortured by them only 4 days previously, nearly 10 attempts to get a needle in i said they will have to use those results. She did however with a lot of pursuation by Judith with comments like "Do it, or else you are walking home" and "I'll give you a slap" convince me to be weighed. I have been saying for about the last year now that i am 15 1/2 stone much to Judiths amusement but Hey Ho!! i was bang on 15 1/2 stone, a stroke of luck. Merlin finally come out of his cave and grabbed my notes saying he just had to make a phone call and will see me then, maybe the "Wizard get out of corners helpline"!!! So finally in we go ready for battle. No sooner were we in and he went to start, so i stopped him in his tracks because as far as i was concerned this was my opportunity to have my say. I have been thinking for some time that i have sort of been forgotten about ny him and his team. I told him straight that i wanted answers and no bulls--t this time. "What has he been doing about securing this light treatment for me for what now is exactly a year on"? I told him that i had no faith in him anymore and was not at all happy, thats an understatement, in the way i have been treated and i now want action. How dare he rob me of a year of my life waiting around thinking he was fighting my corner to get this sorted for me. I know that he has done a few things but the bottom line is we are no further forward than we were last october yet my health is a great deal worse. This Extracorporeal Photosynthesis treatment has the ability to not only stop the GVHD nut also to reverse some of the damage already caused by it and in some cases with remarkable results. A year ago i was still driving and walking around around. Spending lots of time on the Computer and Cooking ect and had lots of independance so the reversal effects would have made a huge difference, whereas now the GVHD has progressed so far that the same results will no longer be possible and who is to blame for that??? He informed me that the phone call he had made was to the Commisioner Of Finance regarding funding for this. Merlin had explained to him that as the treatment was very new and somewhat experimental the ammount of data available to judge it by was small compared to other treatments that had been around for a longer period. He explained that they will usually turn around straight away and say "Non" however the Commisioner was extreemly interested and asked Merlin to Email him the details available and he will have a look to see what he can do, which a bit of a shock all round. Merlin explained and in fact looked rather pleased with the fact that one of his patients had just successfully sued to PCT to get the treatment she needed but had been turned down due to funding. Now i am obviously pleased for this lucky patient but what about me? Don't i deserve the same level of support?

I guess i could go on and on about this much to your dismay but i think you and Merlin alike get the picture, that things are going to change from now on. No more easy touch Jonny5. I want what i deserve, with interest, from now on. Merlin has said that he will sort this out for me and that he will get back to me when i next come into Day Unit in a couple of weeks if not before. We will have to wait and see although judging on past performances i don't have much faith.

Righty Oh! I'm off to make some breakfast as Little Sis will be here soon to drag me off into Cardiff to go to the market and a bit of Retail Therapy too with hands firmly glued in pockets and wallet left at home to prevent and silly spur of the moment purchases, you know the stuff you just have to buy, "Because you need it"!!!

See Ya!!