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….
A change in focus. A change in priorities. A change in what matters most. Something I’ve experienced and heard so much in the past few months. Cancer really has a way of throwing everything up in the air, with it landing in different places than thrown.
As I imagine everyone reading this knows, tomorrow is A level results day, regardless of how they know. It could be a son/daughter of yours, a friend, or even you just know because of the news. For some reading this, it will be their own results day tomorrow, and they are reading this blog to distract themselves from the butterflies of (what they think will be) impending DOOM. I’ve been in that place before, last year I picked up GCSE results, and really I should be chewing my nails, waiting in dreaded anticipation. But I’m not, not quite.
Some of you won’t know that I was an AS student before I got diagnosed, and because I did have 3 full months in school (sept-Dec) last year, I did sit some exams. Nowhere near as many as I should of, only 2. So instead of getting four AS’s tomorrow, I’ll be getting two unit one exam marks. So of COURSE I am nervous for the results. I want to have done well in them. The significance just isn’t as great as before.
Just to be in the position to be getting results at all tomorrow is an achievement, no matter how much I sometimes feel of lesser significance to my classmates who’ll be getting full results sheets. I do feel like that, partially because I feel that should be me, partially down to insane jealousy, partially down to the awful feeling that I should have made it happen regardless of my diagnosis.
Thinking I should have learnt my course in hospital is ludicrous, and I know that. Feeling inadequate is ridiculous as well, but it’s something that I just can’t help. Envy is horrible, yet the most natural of all. Education wise, cancer puts you in a pickle!
At the end of it all though, I know I’m lucky. Lucky to have sat those two unit ones (against my Dr’s advice! She recommended a year’s rest). Lucky to have beaten cancer, and be able to return to school in September. Lucky that cancer swept in and messed up my AS levels, something people take at any age, rather than coming in a year earlier and messing up my GCSE’s. I am SO SO SO thankful I got diagnosed after GCSE’s. I know from experience how that has messed people up.
To say my experience hasn’t changed me would be a lie. Same girl, changed outlook. I always was a fan of school, and appreciated it, yet I would complain about it on occasion. I think I can firmly say now, that won’t be happening again at least not in my heart of hearts. Some of the most upsetting things, most offensive things to read during treatment weren’t nasty comments, or remarks about cancer were posts on social media like-
“Hate sixth form” “f**k A levels” “can’t wait to drop out of school”
Sure, they were just fly away comments, and would never hold anything against anyone who said something similar, but it was awful to read. I would be sat, in hospital, ill, thinking about what would give to be able to take a seat in the class for them. Something to think about- if that’s me, a girl who still had massive prospects, knew she would be going back to school felt that such comments were a stab in the heart, imagine what a girl who has never been able to go to school, or a girl who is no longer allowed to go to school due to oppression feels? At the end of the day I am lucky. Blessed. I will never stop saying, and being thankful.
So, the night before the big results day, a change of perspective. The camera of my mind switched focus, looking more at the right now, and my dreams as opposed to grades, figures and league tables. I now just want to get to university, though I want good grades still, I wanted to have the best grades possible before. Like I said I would have been fretting so much over results right now. Though I will be devastated to fail tomorrow, I have so many options. Exams are a means to an end.
That’s just what I want to hit home to people. Though passing is so important, not doing well isn’t the end of the world. Exactly the same as getting cancer- not the end of the world. It’s how to take to that news that matters, how you continue on. Continuing on, for if I’d known I would be picking up grades tomorrow back in January, it would have been some of the best news I could have heard!!!
So, I urge you all, enjoy tomorrow! No matter what the day brings, think ‘I did it!’ no matter what the ‘it’ is.
Good luck all, I hope you all get what you want. I REALLY hope you all get what you want. You’re all beautiful people for reading this.