With tonight being Halloween a blog about the Teenage Cancer Trust may not seem to be as topical as you may want to be reading. Halloween is the night of tricks and treats, frights, spooks, gory make up and if you’re unlucky enough a dosing of flour and eggs.
I didn’t want to talk topically about fear, frights shock or horror because we all know tha cancer is full of that without me boring you with a blog about it. I guess most of you know or can imagine the gut wrenching awfulness that comes with a cancer diagnosis as a teen, so why draw it out. Instead this blog is about some people I love, the people who make it all ‘ok’ (as ok as it can get) These are the people who as a Halloween-o-phobe you open the door to expecting a ghoul and find a fairy princess there.
So who are these people? Well if you’ve read the top, they are the Teenage Cancer Trust, a charity that before a personal connection most people probably hadn’t heard of before this year, and a charity that deserves much more attention than they get. A charity who I just described as the Fairy Princess of a teenage cancer diagnosis.
If you have no previous connection to Teenage Cancer Trust and don’t really know who they are, or what they do, you will be blown away. By building wards for cancer patients they give the opportunity for teenage patients to be in their natural place- with other teens and young people, even when they’re having treatment. It allows them to have space, watch TV and have some of the choices you would have in your own home. It allows young people, like me to be in their own, with their own and not with the babies or the grannies.
And why do I love them? Concisely put, they made the difference between hope and defeat in the face of my own diagnosis nearly a year ago. They made the difference between being with other teens, and being with 80 year old women telling me about how you I am. They made the difference between normal conversation and well meant pity and grandchild chatting. I firmly feel that an ordinary ward has a much more pessimistic feel than any TCT ward, with big colourful sofas and random light up jukeboxes.
I love what they do so much, I love what they stand for and I love Roger Daultrey. I love the ethos that a hospital ward shouldn’t have to look like a hospital ward. I love that you can have friends to visit. I love that when they do visit you don’t have to be huddled around a hospital bed, that you can play (I tried!) pool, watch films or just chat.
The difference it makes, to be around others your own age, for them to also be bald, lugging around drip stands and have a complete understanding everything that is happening is completely priceless. I do think it is the friends from the TCT ward that I made that got me through treatment.
My diagnosis was an extremely confusing time. Having my consultant be able to say ‘let me take you to the ward, it’s where you’ll be looked after’ and even with a quick off-the-cuff visit to be able to speak to some nurses, the ward manager, and day doctor is incredibly reassuring. My mum often says that she saw a light when we got to that ward, that she thought everything would be alright after arriving there. She takes pleasure in describing the Cardiff ward, the Skypad as looking like a penthouse youth club. To be fair to my mum, that’s exactly what it looks like.
If you haven’t quite got it already, the Teenage Cancer Trust are more than just people who build wards, and they are much more than a name of a collecting tin, the name of something ‘which would never happen to me’. Teenage Cancer Trust means you are supported, so that when you’re ill on Christmas morning, there’s a nurse dance around your bed. The teenage cancer trust means that when all you want is duck pancakes, your mum can cook some in a microwave for you. The Teenage Cancer Trust means that when your brother visits you, he can watch TV with you, and it isn’t a case of ‘let’s stare at Emily for the next hour’. It meant that I have made amazing friends. I meant while I was sleeping, my mum had other mums to sit and eat breakfast with. It meant everything really. Everything and so much more because I am here to tell the world of my love for this charity. Hey deserve every penny they get because that penny will go towards providing lifesaving treatment to someone like me.
Everything they do may seem simple, grouping teens together for chemo, but it is so so much more than a room to have treatment in. A place for treatment, but also a place to try and live, when your life isn’t yours to be lived, but tucked away in a box.
I love Teenage Cancer Trust, because they are there for you wholeheartedly in a time of need that you never thought imaginable.
If you want to see some more pictures of the teenage cancer trust ward yourself, (the above are from Cardiff) or find out more about the awesome stuff they do, check out www.teenagecancertrust.org
Hope you liked this blog, enjoy the rest of this spooktacular night!
Keep smiling (and trick or treating!)🎃
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!!!
I love crazy charity fundraising. I love it. Why?
-Because it make a massive difference to all of the charities that matter to us all and it can often turn it into FUNdraising!
I love fundraing, I’ve said it once again. Love it when people do challenges to fundraise on my behalf, love arranging fundraisers, love seeing the generosity of others and love hearing about others who fundraise.
I also love it because it’s mental. A hundred years ago who would have thought climbing mountains, waxing your legs, jumping out a plane and selling cake would become such a big part of society, and something that we all (pretty much) are a part of. Who would have thought trekking, cycling, running would have provided vital services and be funding lifesaving research.
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