The Day After!!

Well I have to say that after all that has happened of late yesterday was a non event really.  Generally just chilling out because as you know this place stupidly grinds to a halt on the weekend so there is a distinct lack of Doctor Participation.  It is believed that the last sighting of these strange life forms was around 1979 but it also appeared the person responsible for the sighting was taking rather large doses of Morphine at the time which might have compromised her vision.


After the previous nights lack of sleep I was tired all day as you can imagine and in some ways was glad of the longer spells of being left alone.  I also felt generally sickly and by far off my food too, just as well I suppose, at least I don’t have to try and force down their swill.  I was a bit cheesed off though as I had arranged for my mother to fetch in some Liver, Bacon with gravy etc but sadly I had to text her and tell her not to bother as it would be a waste with me feeling like this.  Her and my dad turned up later on in the afternoon and she hadn’t got the text so they were armed with a nice hot food flask for me.  She explained that it was supposed to keep things warm for up to 8 hours so I decided to keep hold of it and maybe bit by bit I would at least have some of it during the rest of the day.  Judith turned before them too with the obligatory arm full of carrier bags of goodies of all descriptions.  She generally has to go to Tesco’s everyday to fulfil my requirements so to speak with, to be honest, food stuff which I really shouldn’t need if they supplied me as they are supposed to with good nutritious food here.  

I had stopped with the doctors consent for a change ha ha ha the Nebuliser that I was taking twice a day, just to see if it was that that was causing some of the wheezyness and I thought it might have been because my chest had settled a lot by mid morning and was no longer wheezy.  It more or less continued like this till probably around 7pm when the rattle re appeared and the coughing started with vengeance.  Why is it that it always seems to get worse of an evening no matter what I do to avoid it??  Sadly that was to stay for a number of hours, but in saying that the last time I can remember looking at the watch the time was 1am and the next time was at about 7am which is bloody good for me at the moment.  Laura came in this morning to nick some of my precious Red Gold and put up the first dose of today’s poison.

They have changed the dosage to 125mg twice a day of cyclosporine and as some of you early readers might remember the hassle I had with trying to get adequate anti sickness cover in cover.  Even when they had eventually sorted that out there seemed to be a certain dosage level that really made me feel dreadful.  I used to feel sick and giddy and it’s hard to explain exactly but I tend to try and explain it as a feeling of being filled with toxic nastiness, not at all pleasant believe me.  It was somewhere between 100 and 150mg’s so I remember.  Up until now I have only had this feeling a couple of times when it was just once a day now it is twice a day I have had a few occasions of these feeling and there in lies a problem.  You see without the cyclosporine I would be having no treatment at all now the PUVA or should I say Skin Burning treatment has stopped completely.  You know I am still suffering from lots of, well ulcers they are now but they started off as blisters that subsequently burst and then got infected from when they burnt my skin all those many months ago now.  They have started to cover them up and put on these iodine based patches which seem to be doing the trick.  The intention was in the beginning to treat the GVHD with both PUVA and eventually 250mg of Cyclosporine which I knew would probably cause problems with sickness etc but thought we would cross that bridge when we get there.  The fact the I am having problems already at half that dosage and no PUVA would indicate that a change of tactics is required.  Again throwing up more problems. What next? Etc etc.  I know a lot of approaches have been discussed along the way between the team but they have always had other problems such as the infections and breathing problems to try and sort out first and the GVHD has sort of moved further down the list of things to do.  A bit like when you get put on hold only to be told, “you are 28th in the queue, please hold” and after the usual dreadful attempt at Greensleaves or some other obscure tune your forced to listen too the voice comes back and says “you are 30th in the queue, please hold we do value your custom” Grrrrrrrrrrrrr!!!!!!!!!!!!  If you valued my opinion you would employ more people in the call centre to deal with problems.  Oh and while your at it get in the engineer cos your queue goes backwards not forwards.

I’ve had a few down days of late which happens sadly.  Usually I deal with them quite well and as you know I do have a wonderful councillor Sarah who helps me through these times. I can find at times in here though that it can take a bit longer to get through it.  I am surrounded by some lovely people who really do care and are only too willing to sit and chat and cheer me up etc but the same old not wanting to be a burden and stuff stops me from asking a lot of times.  The last few days were made a lot more positive because of a few people like Sally, Laura, Nutter Rachael, lorraine, yolanda and Penelope Pitstop of course, just because they have gone out of their way to spend some of their busy time to speak to me and help me get through it.  I really do appreciate it.  On the other hand I suppose there are also some people that just added to the problems in some way although a lot of it could have been made easier if the actual service etc was run better for example buying in food that was at least intended to be consumed by humans and not livestock for one.

Ah well dinner has just arrived so I better go and get stuck into a plateful of Roast Lamb, Roast Parsnips, Green Beans and what looks like lovely thick Gravy and Mint Sauce of course.  No spuds as they arealways inedible.  

So wish me luck!!

See Ya!!

p.s if the first mouthful is anything to go by this could well be the best meal I have ever ever had in here………