Still in hospital...I might eat myself if I am not careful...and i've been thinking...

I am still in hospital, arghhhh.....  As you know I was readmitted, this time to Leicester Royal Infirmary just over a week ago to up my steroids again and try and get rid of this Graft vs Host Disease that came back.

Incidentally pics of my room at Leicester...very different to kings...like stepping back in time, but they are very nice here.

 

I very quickly started improving which was fab, the rash went in a couple of days and they started reducing my steroids again.  I am now off of the intravenous ones and on a lowering dose of the tablets.  I was being discharged on Tuesday (24th) and the day before they were prepping my discharge notes to speed up the process on the actual discharge day.  Then literally 10 minutes after the doctor had come in to speak to me about the discharge notes and medications he came back in to say there was a problem!

Damn it...  they had got a blood result back for a virus called CMV.  This is one of 3 virus's that they check for in your body to see whether you are a carrier before transplant.  It one of the most common virus' and once you've had it, usually from childhood, it lies dormant in your system and when you are immune compromised such as having a transplant it can reawaken and make you ill.  I carry this one virus called CMV so i've been on some medication to try ad keep it dormant but....the blood test results showed it has reawakened.

I don't feel ill at all, but they have to stop it or it will lead to bad things and we do not want that! So unfortunately they have to give me 7 days worth of an anti viral medication intravenously through my hickman line.  They can put me on tablets, which they probably will when I eventually get discharged but the complications are that this anti viral medication often makes your blood counts drop (brilliant!) and can make your kidney and liver function bad as it is very strong so I need to be in hospital to have it.  

On top of this I am still extra immune suppressed by being on the steroids still.  Thankfully though I am feeling fine, my only side effects, things that are making me feel unwell are the steroids and growth injections which make my bones really hurt...I needed morphine the other night!  I feel like my whole lower body is being stretched and stabbed all the time which is painful and I am very weak if I try and walk.  I am just happy I don't feel sick, can eat, can breath fine etc...

It is now a waiting game as frustratingly they are a little slow here.  The CMV blood test check is only done on a Monday and Thursday and takes at least 3 days to get the results.  Therefore I could be ok but need to wait 3 days for the results before they'd let me out meaning I won't forseeably be leaving hospital anytime before the middle to end of next week....Roll on February! Argh....

So I mentioned I might eat myself....I seem to be thinking of food all the time.  In fact one of my projects while I am off os to sort out all my recipes and get some order/type them up or something.   I am having a bad day in terms of boredom, although feel a bit better for getting sorted and writing this...I always think I don't have anything to say then blab on for ages...sorry I digress.  Yes, I seriously have just had an eating day today...I feel like it has been constant and actually I don't care, although I will have to start caring soon I think.

You will be pleased to hear the food in here is so much better than Kings.  You get to choose your main, then you choose your potato bit and veg bit separately.  The soups are not powdered and actually contain real bits of veg...shock horror! The Veggie options are basic, like pasta bake, veggie burger, leek and potato pie (the worst thing as it is literally a load of mash potato with cheese on top...very dry but I am not complaining, oh no.  In fact a lot is dry but so much more edible and like proper food.  There is a kitchen and if I am not neutropenic I can go in myself and get stuff, in fact you make your own brekkie in that case.  The kitchen has all sorts of drinks, cheese and crackers, fruit, crisps, choc, biscuits, soups, bread...makes you feel more in control rather than dictated to as to when you can eat.

Food becomes a massive part of your day, you look forward to receiving your meals etc... when you are in for such a long time, one could say it is the highlight! 

Other news...I am thinking once again of when I life is getting back on track.  I feel more positive although I know it will be a longer than 6 month process now.  I have always loved baking etc and so I have decided to set up a cake/bake club when I am better.  I cannot find one in Northampton and it will be a social thing maybe once a month or something, each person makes a cake, it can be themed, round someones house or at a venue, chat, laughter, recipe swap, could even have baking sessions such as bread and share it out etc.... lots of ideas but it excites me.  Got inspiration from Clandestine Cake club http://clandestinecakeclub.co.uk which is a national thing so might set up one of those in Npton as a starter.

The other thing is that I have always thought of myself as creative and love sewing, making home stuff, bags etc... which I used to do.  I've wanted to hone my skills, maybe do some craft/vintage fairs etc and I have finally found a great studio where you can do sewing sessions, courses, stitch and bitch sessions each week and it is only around the corner from my house! Just need to get better......

Bye for now...it's dinner time in approx 47 minutes...now what did I order...