no alcohol

Today was another lymphocyte infusion day, made possible by Jane’s extra cell donation last week, and because it’s now just a routine procedure we set off in good time without a care in the world. The traffic was really quiet for once, so we arrived in Southampton full of laughs and confidence.

Little did we know that was going to be short lived!

We checked in and, with time in hand, got a coffee from Costa and poked our heads into C6, the ward where I had my transplant a year ago this Friday. This was my first visit since I was ‘released’, and I felt really quite strange and uncertain about it. Sadly, other than Darren (who I love seeing as he was so fab), there was no-one I recognised so we went back to the day ward C7.

After half an hour’s delay Joan was ready for me, and in we went. I immediately sensed something wasn’t quite right as Debbie, one of my consultants, was also there. They wanted to have a good look at my skin as the next phase of the lymphocytes are much larger doses which can trigger GVHD if they don’t tread carefully. So… next came the bad news. Since my last infusion the sun has triggered a bit of GVHD on my arms, my chest, my back, stomach and legs – and they are worried that increasing the dose in one big wallop could cause a worse reaction.

As you can imagine, I was gutted by the news, especially as I have been doing so well and have had no setbacks so far!!

So now I am not allowed to drink again for two weeks, with the exception of a couple on my birthday, I am not allowed in the sun for two weeks, I am not allowed in the pool for two weeks, and I have to keep myself liberally smothered in a steroid cream called Betnovate, then head to toe in suntan lotion on top just in case I go outside to the shops or whatever! After these two weeks, I have to go back for another inspection and lymphocyte top up on the 19th.

In the meantime, everything else looks good for now and I have to keep reminding myself that the things they want me to do is for my own good – no matter how miserable. They don’t want me back in hospital to be treated for GVHD of the skin, gut, liver, mouth etc, etc – anymore than I do, and they want to make sure they have me in a safe and stable condition before our holiday in September. But I have to say – I did feel like I was in the headmistress’s office… all the laughing and joking soon stopped!

I can’t believe it… after everything I have had to put up with!!! Anyway, after a bit of a moan and a grumble, and having had my bloods taken again to make sure there is nothing else sinister going on, we set off to the pharmacy to order more Betnovate, and followed that with a detour into Chichester to a lovely little restaurant called Woodies where we stuffed our faces. 🙂

My updates have been getting slower, partly because there’s not a lot to tell, and partly because I am now just feeling trapped and unable to do anything – so have resorted to washing, ironing and cleaning – in addition to becoming addicted to Jeremy Kyle, Loose Women and The Chase. I was going to give up soaps, but now I’m not only hooked on Corrie, but have become fairly involved with Emmerdale. I haven’t quite succumbed to Eastenders as I just can’t cope with all the shouting, well… not after Jeremy Kyle!!

So, last week. Friday was the three month day since my transplant. I can’t believe it has all happened really. When I look back it only seems like yesterday that Dr Janes was saying “I’m sorry to tell you…”, but when I think about the journey it seems to have been going on for ever.

I now only have to go to Southampton every two weeks, but was dreading it this week as they have to take blood from my arm since I had the line out. Last time was such a nightmare, causing tears and everything. This time my heart sank when I realised it was the same girl taking the blood, but, she got it in one!!! I think she was a surprised as me, and once she had taken twelve buckets full (it might have been test tubes), she even thanked me for letting her do it. Anyway, they have carted it all off to do who knows what with. Apparently they needed a lot to do every test imaginable so they can get an idea of how things are going. They also check the Chimerism which tells them how much of Jane’s marrow versus how much of mine, so fingers crossed for more than 90% now I’m off the cyclosporine.

Next Monday (17th) we’re back off to Southampton for the 100 day bone marrow biopsy – so I’m looking forward to that!! It’s hideous, so I hope they have plenty of gas and air on standby, as well as a box of tissues to wipe my eyes with. Zig says I always look very sorry for myself after having a bone marrow sample taken, a bit like a small girl who has just had the back of her legs smacked by the head mistress!! Hmmph!!! We’ll then have to wait another 10 days until we get all the results of the blood and bone marrow tests, which should give an indicator of progress so far.

I don’t suppose for one minute it will give them an indicator as to when I can have a little drinkie. A month ago we asked if I could have a small glass of wine with a roast lunch and were told “not for some time” by the consultant. So when we went last week we check with the senior post transplant nurse just in case the consultant has it wrong, and were told “absolutely not”. Next time we’re going to ask if I can have a small dash of brandy in my coffee as a bit of a warmer – but I’m not holding out for good news on that either.

On the plus side, I still feel OK, my hair is growing (slowly) and I have now started using a bit of some sort of styling wax stuff that I found in the boys bathroom cupboard.