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….
This week really has been one for the public speaking, and an extremely busy one.
What with this being the last week in school before half term I was incredibly busy anyway!
So, on Tuesday, Simon Weston spoke at my school! He was invited to speak to motivate students to try their hardest and I went as a 6th form representative. Let’s just say he spoke incredibly, and is definitely worthy of the title of Britain’s favourite hero.
He stuck around to chat afterwards, and I had a chat to him about public speaking and got some great tips on speaking front of a crowd, especially as I’m not one for writing speeches. The quick chat we had gave me loads of confidence in just trying my best and not worrying if I absolutely crash and burn! I feel very honoured to have met and personally spoken to him. His public speaking was just…wow and hope his style and tips rubbed off on me!
The 2nd speakingy thing this week was being a patient representative at the Cardiff Connect Event for the Leukaemia and Lymphoma Association which was an event I loved! It was set up to just show what the charity was up to, and because I was the guest speaker the theme of the evening was Childhood Lymphomas. It really was fascinating because as Non Hodgkin Lymphoma is fairly uncommon for my age, and Burkitts even more so, I got to hear all about the leaps that have been made in lymphoma treatment, research and mortality rates. I actually found it quite surreal because I’ve never me anyone with Burkitts before or really heard it be mentioned by anyone else at all, so to hear so much about it and meet some paediatrician lymphoma specialist really was amazing. The speaking was a few Q & As to say about how treatment was, and how I found out I had cancer, just make those there more aware. It was a really good atmosphere to speak in, intimate and everyone was lovely. I definitely sound like a total medical nerd when talking about it, but I heard a really interesting story about the discovery of a chemotherapy drug, Vincristine.
‘Once upon a time, in the West Indies during the 60’s pharmaceutical companies were interested in the doings of casual labourers harvesting sugar cane. In those parts you couldn’t work on the sugar plantations if you were diabetic, so many labourers knew they had to conceal the glucose in their urine to get a job. Somehow they managed to make their urine clear of sugars, drinking a tea made from periwinkle leaves, and it appeared to work, they would turn up, by classed non diabetic (according to their wee) and get the casual work. Of course, with pharmaceuticals thinking this could be the big time for treating diabetes. So they fed this brewed stuff to rats and…….NOTHING happened. A bit confused, the scientists injected the rats, BAM within a week they were all dead. Upon examination hey found the solution had in its pure form, wiped out the bone marrow and immune system of these rats- VIOLA they had found a cytotoxic drug, a.k.a chemotherapy, and is one of the drugs I received during my treatment.
Pretty fascinating right? Most of you will probably have skipped through that but, to all science brains out there, you learn something new every day.
That takes me nicely onto probably the main-ish thing for the week, and definitely the bigger of the two speaking engagements- the Mayor of Newport’s Charity Gala!
For those who don’t know, I first met the Mayor when he visited the TCT ward Skypad when I was an inpatient this year, and then chose it as one of his charities for the year. I have been sat on his charity panel, and was asked to attend the gala last night as a guest and representative of the Teenage Cancer Trust!
It was held at the Celtic Manor and was a thoroughly great evening. I had gorgeous food, met some great people (I think we had the best table!) and did my speech. I was so so pleased with it and not to blow my own trumpet, was definitely the best one I’ve done so far! I stood up and told everyone about who I am, that I’d had cancer and what that meant as a teenager and more importantly, what the teenage Cancer trust meant to me as a teen with cancer. I really hope it boosted the money raised and helped all the attendees REALLY know why them parting with their dosh was so important. They think more than £20,000 was raised in the evening which was amazing, and I got the RemissionPossible word out there which is always what I want. Two of the people at my table said they were going to sign up to the Delete Blood Cancer Stem Cell register after me talking to them as well which was amazing!
Because the theme of the night was Newport’s Finest, there were quite a few celebrities, that I chatted with and stuff, checkout the pictures below to see if you know who they are! There’s all sorts, from authors to rugby players to a west end star!
As always, tweet us, follow us, like us, share us, and support us! (Especially if you are new to RemissionPossible!)
Of course if you are interested in talking to me more, get involved have me to speak at an event, drop me an email through the Contact Us! Page.
The next blog will be, called ‘Why I love…Teenage Cancer Trust’
P.S. I’ve realised a lot of our widgets don’t show up on the mobile app, so you can follow us on twitter @remissionpos and my twitter is @emy_clark and you can like us on Facebook at www.facebook.com/remissionpossible2014
P.P.S As far as the discovery of Vincristine and the Periwinkle plant is concerned, there is speculation that the periwinkle tea didn’t reduce blood sugars at all, it just meant those farmers weren’t drinking their usual tea with sugar in!!!