A Late Update

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.

Frustrating, but still on the up!

Yesterday I was back at Southampton and hated my day! It was by no means the worst day I have had there as my time on the ward was the most difficult! But…

To start with the oncology unit was really busy, the consultants were all running late, and for the first time since May I had to have blood taken from my veins as all the lines, (my built in pipes), have been removed.

Due to the vile amounts and strength of the chemo I had pre-transplant, my veins are now smaller and they weren’t that big to begin with. A young technician tried to take blood from both arms to no avail and then beeped the senior nurse to ‘have a go’! It took for ever and eventually I succumbed to a few tears – after all I have been through – pathetic, but you can probably tell that I was feeling a bit sorry for myself!

When I eventually emerged from the room Zig was there to do a bit of comforting, which I think caught him a bit off guard. Anyway…I got my stitches removed from where they had taken out my line, very straightforward, and my name was called to see the consultant.

Good news though! My CT scan is all clear, no sign of any pneumonia, hurrah! So I can stop taking three of the drugs and the cyclosporine. Now Jane’s immune system can finally take over! I hop up on the couch to have a thorough examination of my whole body as he is looking for any signs of graft versus host disease which can show up as a pale rash, and shows Zig the signs to look for on my back. I know I must not be ungrateful as I am getting better, but I am so sick of being pulled about and looked at! (At least I now only have to go for a routine check over every other week unless I start feeling anything wrong!)

We then asked a few questions:
Q: ‘Any chance of a glass of red with a Sunday roast?’ A: ‘Not for a while yet.’
Q: ‘When can I go back to work?’ A: ‘Not for at least 6 months.’
Q: ‘Can I eat salad yet?’ A: ‘Only if it is thoroughly washed in boiled and cooled water then dried.’
So I didn’t bother asking if I could go to The Honey Club on Brighton sea front for the night!!

After all that we go down a floor just for me to be shut in a tiny room where I have to inhale Pentamidine through a plastic pipe for 20 minutes. I really hate this procedure but it is to prevent PCJ (pneumonia) lung infection and I have to do it every month!

On our way back to the car, we picked up a Hot Chocolate from Costa to cheer me up and… the icing on the cake… that was bloody cold!!!

They said the recovery would drive me nuts, and they’re not wrong! 🙂

Weekly Check Up

Yesterday was check up day back in Southampton, and all seemed to be going well!

They are still pleased with my progress, and Joan (post transplant head nursey bod) managed to deal with a little lump of dried blood that has been hanging about since I had the line put it. It turned out to be a scab that had formed over a small stitch that wasn’t taken out as they couldn’t see it – due to the scab!! Anyway, all sorted much to our delight 🙂

That was followed by a meeting with Debbie Richardson, my consultant, who decided to send me into a bit of a meltdown. (Well, nearly). They have been reducing my Cyclosporine dose steadily which I thought was a good sign. But… as it turns out, it’s because there’s too much of my bone marrow left, and not enough of Jane’s yet. You can imagine my reaction… I already feel sick all the time anyway! Apparently my blood is now 78% Jane’s, and 22% mine – but they are looking for it to be in excess of 90% Jane’s otherwise it’s possible my marrow will take over again. Not what we want – and I was left panicking that I was going to have to suffer the whole bloody process all over again. The other problem is that reducing the cylosporine dose increases the chance of GvHD (Graft versus Host Disease), and I really don’t want that.

Luckily Zig was with me and spotted my panic before it really got a grip, and between him and Debbie they explained that everyone is different and it’s not an exact science. There is a lot of fine tuning to be done. Also no sign of GvHD so fingers are still well and truly crossed. This morning I had the follow up call from Joan about blood counts etc. All still doing brilliantly and nothing has gone into meltdown yet- so far so good – and cyclosporine reduce to 50mg. On which subject…

After my meeting with Debbie I had to go to the pharmacy to pick up last week’s drug order, dropping off this week’s top up prescription on the way. At the pharmacy there was no record of the order, so I had to go back to Debbie to get another prescription. Don’t forget, Southampton General Hospital is massive. At least 100 miles from end to end, or that’s how it seems in my state. Got back to the pharmacy having dropped off the replacement prescription at the Oncology  department, and was given the pills. As I was there I thought I would also get the stuff I had ordered for next week, the oncology people said it had been processed, but once again there was no record of it in the system. FFS!!!

Anyway – today’s another day and I’m feeling a bit better again. I don’t know if it’s the weather, but I am not getting as cold as I was so I have popped on a lovely little Cath Kidston number!

kath kidston