I’m doing ok.
As a family we’re doing ok.
To just be ok, is showing how hard it is at the moment. Like really, really hard and more emotionally draining than it has all ever been before.
AS usual I feel I am completely a tale of two halves. The ‘right here, in front of you’ me seems to be doing pretty well. I’ve started uni, made some friends, made a few of my classes. I can walk about and chat, ad go for lunch with my family. I can squeal over Bake-Off like everyone else in Britain and on Saturday I am going to the wedding of on of my most treasured friends. It’s not an exciting life, but it works and I am lucky for it.
The ‘medical notes’ me is in quite a different place. The skin graft versus host disease (GvHD) has progressed rather dramatically over the last few weeks and is the main reason this blog has been in the writing for quite a while. Trying to explain everything that going on is overwhelming and upsetting , especially I really felt that I would be ‘better’ by now, or at least feeling like things are significantly on the up. As well as having hospitalisations for the ongoing infections and temperature spikes, the breakdown of my skin has led to me being referred to start a specialist treatment called Extra-Corporal-Photopheresis, abreviated to ECP for short.
I have been through a lot, and had some insane treatments (having someone else’s DNA for example!) but this one is hands down the most mental, and sci-fi of them all so far. Don’t quote me on any of this detail, but to my understanding it is a rather revolutionary, yet novel treatment that is really changing things for people with GvHD like me.
It involves a process like dialysis, where blood is taken out of my body and filtered into a machine. It is then separated into the different components and the red blood cells and plasma go straight back into me. The white blood cells are then mixed with some medication that makes them sensitive to UV and exposed to it. SOMEHOW this sun bedding of my blood will improve the condition for my skin!!!!!
It is completely bonkers. And I love that.
They have no idea why it works, but I’m so glad that some fabulous scientist had this theory and tested it out because I have such high hopes for it. It’s down to this GvHD that really feel that I have been struggling emotionally. The current treatment is immunosuppression which is obviously contributing to the contraction of all these infections and is probably why I can’t get rid of the para-influenza I currently harbour which means I have to spend all of my inpatient time in isolation, which is as you can imagine, horrible, especially seeing as I am a social person. It really could lead to me not having to spend so much time in hospital, which since June has definitely been more ‘in’ than at home .I’m actually in hospital typing this, after having spiked on Tuesday night.
The thing that I have the highest hopes for is the improvement of my hair. Since the transplant my hair has grown back but recently most of it has fallen out again, as a result of the skin GvHD. As you can imagine this is absolutely devastating, to finally look like I’m getting better, and then look patchy and sick again. The most horrible thing is that I don’t know when it will grow back, I just have to treat my scalp well, do my treatments and hope. I hate the uncertainty, because though hair loss is nothing new for me, before it was end of chemo = hair. Now it’s rather a lot more of a grey area. (The situation not the hair. At least not my hair)
It is very important to take notice at this point that I said the GvHD was causing the loss NOT cancer, and NOT chemotherapy. I would hate for someone to think that I had relapsed because I has a headscarf or hat on. From that point of view medically I’m doing very well, thank you very much! It’s not a thing against people with cancer, duh, but I want people to know how even though this is so so hard and I’m still ill, I’m on the mend.
So that’s where I’m at. Juggling going to university with being an inpatient and am going to be having crazy special skin treatment…. The CMV virus has flared up again (according to my blood results) so I’m stuck in hospital for some time yet.
Oh, and I won an award!
I literally don’t actually know much about it, but last night I won the ‘Local Hero’ Award at the Voice Magazine (for Newport)’s V Awards! I had been invited to the ceremony, but had assumed it was an invite due to my being in the charity circles from doing work with the Mayor last year. I hadn’t imagined I had WON something. Goodness. I didn’t get to go, what with being stuck in TCT, but it is a big honour to have. Thanks to everyone at the Voice and whatever kind person/people who nominated me.
On that more happy note than above, keep smiling….