Since telling you all of my news on the 17th, STUFF has happened.
Lots of stuff.
I have had my first round of chemotherapy, and though there were a few hiccups along the way I am now home and feeling relatively ok. If I am honest the fact it is my younger sister’s 16th birthday tomorrow is a more daunting prospect than side effects at the moment. I am sat on my sofa, and just waiting for my neutrophils to drop, and make me ‘susceptible to infection’ and for the rest of my blood counts to lower- potentially making me need a blood or platelet transfusion. It’s all right though.
As you may have heard, my sister Holly unfortunately isn’t a match. It was a massive blow to our family of course because it really would have been the easy option. It would have been hard, with the process of Holly donating being tense due to her diabetes and just generally a tense time due to the importance of the donation. If Holly had been the donor it would simplified things. We wouldn’t have to worry about the respect of there not being a match. We wouldn’t have had to worry whether despite all our effort, I have to endure further chemo, just to wait for a donor. It would be easier.
Obviously this isn’t an option now, and complicates things slightly. Anyway, I’ve never rally don things the easy way, otherwise I wouldn’t have done science Alevels or done the course in Imperial College last year, or applying to uni without AS levels or even having cancer firs time round. Doing thing the hard way just gives us the opportunity to achieve more I think.
The progress on donors has been quite frankly incredible. We have had 519 clicks to Delete Blood Cancer and Anthony Nolan (!) and from what we have heard so far, we have around 300 people who have signed up to the registries SO FAR. (This is just from my rubbish social media counting…)
This IS just the start. Some local companies have decided to run donor recruitment days, place the registry details on their office intranet and some places have printed the details on their payslips.
I regularly wish I was a more interactive writer, better comedy and portraying the sometimes incredible strangeness in my life but at this moment, however showing the seriousness of is key. I need a bone marrow transplant. I will need to have one to live. Right now, my best option is a generous, selfless thinking member of society that is also miraculously a HLA match for my blood. A match from an unrelated donor is coincidental, and hard to find so I need as many people as possible to sign up and maximise the chances of my finding a hero. Many of you ask about the potential for being tested specifically for me, but the thing is there are thousands of people out there as well as me looking for matches, looking for thir heroes. If you join the register, you could be one of their heroes. You could be a 12 month olds baby’s lifesaver, or a mother of three’s lifesaver, a teacher, nurse, firefighter, student or aspiring ballerina’s lifesaver. Or you could remain on the register and never be called up. Give yourself the opportunity to become that hero.
Joining the stem cell/bone marrow register is a big thing. Huge. If you donate it will involve needles, and blood. But it would also SAVE SOMEONES LIFE. I urge every one of you reading this to sign up, encourage others to sign up, or find some other way of supporting. It means the world to me, and could one day result in you saving someone’s world, perhaps mine.
Like I said, if you sign up it is an awesome, super-duper, cool, heroic and awesome thing to do. So shout about it. Scream from the rooftops, subject your Facebook friends to the news, and frenzy your followers on twitter. We want to see #RemissionPossible ALL OVER social media. We want to see your swabs, your spits, the kits and the sign up notifications. We want to see it ALL. If you feel like you’re spamming us, you’re doing it right. The first swabbing pictures are beginning to come in, and I love it!
Our Facebook is RemissionPossible (www.facebook.com/remissionpossible2014)
Our twitter is @remissionpos
As always- to sign up to be a bone marrow/stem cell donor…
If you are 16-30 years old register at www.anthonynolan.org
If you are 18-55 years old sign up at www.deletebloodcancer.org.uk
Please note RemissionPossible as your reason for signing up.
Now, if you are unable to sign up for one reason or another (a 74 year old lady was disappointed to be unable to sign up this week, amazing!) please, please don’t leave it there. In Britain we love ‘nominating’ people to do stuff, so why not try and recruit ‘Just one more’ onto the register.
Thank you for all the well wishes,
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!)🎃
6 months in Remission!
So as of Friday I was officially 6 months cancer free!
Amazing how time flies right?
This also means that RemissionPossible is now a lovely six months old!
Remission, cancer-freeness is quite simply amazing, and I really think that it is something that unless you have experienced a similar situation yourself you can’t imagine what the feeling that is associate with remission. I love the word and all that it means. I really don’t think anything makes me happier than hearing of other people’s successes and having my own success, carrying on each day.
Of course I’m not thankful for the cancer, but to be still alive, kicking and causing havoc- I am so so so grateful, and I love the position I am now in, with the opportunity to help others. Read the rest of this entry
I love the NHS.
I love the NHS, that’s right, I love it. I am so relieved to get that off’ve my chest, you all now know my-not-so-secret love, deeper than the oceans and wider than space.
NHS. Three letters, or three words. National Health Service. Such romantic words, so originally named.
Of course I’m not having a romantic relationship with a public tax funded, government designed, political minefield of a health system, but I often feel like I might as well be. I’ll say it one more time- I love the NHS.
But, WHY do I love the NHS so much?
Well the answer is obvious- it saved my life and it will have almost undoubtedly helped you at some point or another (we were all born once remember!) The NHS is a lifesaver, and I owe everything to it.
Read the rest of this entry
As the title appropriately suggests…I won an award! Pretty groovy right?
It means that you are no reading the blog of one of the Lymphoma Association’s Beacons of Hope. I love that. Beacon of Hope, makes me sound strong, tall, and almost like a mountainous glass sculpture. Lovely.
So I heard I’d won it about a month ago, and travelled up to Aylesbury near Oxford to collect the award, and boy was it an eventful evening!
For one, I’d gone to school on Thursday and anyone who’s knows some decent geography will know that Aylesbury is a fair old slog from South Wales, so regardless of traffic we were already pushing it. As you can imagine, a road closure didn’t help us in the slightest!
Read the rest of this entry
So this isn’t exactly a blog….because I wrote a guest blog for Chris’ Cancer Community!
It’s kind of about how cancer affects education, and kind of about this back to school season (even though it’s now the 3rd week of school!) you can read it here- http://www.chris-cancercommunity.com/cancer-stopping-education-emilys-story/
(But first check out the rest of what’s been written!)
Over the course of writing this blog, I have had views from many different countries, something which greatly excites me! I can officially say that RemissionPossible has been viewed in all of the inhabited continents, and this blog is dedicated to all of you, my non-UK, international readers!
I would love to hear from you, where you’re from, and how you got to hearing about this blog. The thought that, as a teenage from little ol’ wales I might be known, by and affect people from Brazil, Taiwan, India, and Belgium….just to name a few
Read the rest of this entry
This is all about what has gone on in the last week.
For ease of reading this is the contents of the blog….like a book!
1. Being in a Leukaemia & Lymphoma Research focus group
2. Delivering a gift box…and clinic
3. Being on the news!
4. Volunteering for Look Good Feel Better
5. A RemissionPossible Film
So this is once again a bit of a newsy type blog, because of all the stuff that I’ve been up to this week, and just general developments.
Read the rest of this entry
Sorry for my recent silence, I’m sure you were all incredibly disappointed to have a blog to red last week, but I have been elsewhere!
I have much to talk to you all about as a result!
First of all, the reason I didn’t blog last week was because I went to
Southampton on a university summer school, run by the oil company BG group. To put it frankly…..it was amazing!
I was doing a marine course, and though I’m not looking at doing it as a career, it was incredibly interesting and was just the most incredible opportunity t have what with some of the things we did!
I got to go on a boat which is worth over 1 MILLION pounds and sail around Southampton Water, doing scientific measurements, I got to look at plankton under a microscope….though perhaps most importantly (jokes!) was the fact we got to go Laser Quest (yay!)
Read the rest of this entry
Today, May 28th is World Blood Cancer day.
Every year, 30,000 people in the UK are diagnosed with a blood cancer. These are Leukaemia, Lymphoma and Myeloma as well as a few other cancer like blood disorders. That is equivalent to one person every 20 minutes.
Blood cancers are the most common type of cancers diagnosed is children and young people.
I had a blood cancer, Non Hodgkin Lymphoma.
At this point you may be asking
“Well what does this mean to me?”
Quite frankly, this means everything. EVERYTHING. Why? Because YOU are the cure for blood cancer. By donating stem cells you can save someone life, you could cure someone cancer.
How? You could join the Stem Cell register. You could become a lifesaver, you could give someone with no other options, the very greatest gift- life!
Anyone with half an eye on social media will have seen the #shake4mike #teamMargot/#swabforMargot campaigns. They both needed a donor from national registers, but originally when searched there was no match. Thankfully they both have matches now- but many people don’t- more people need to join.
If you joined the register, and were found to be a match 9/10 donors donate in a process similar to giving blood. The other 10% donate by having bone marrow drawn.
The bottom line is, though the prospect of donating bone marrow is a daunting prospect before signing up, IT SAVES LIVES and if you were (unfortunately) diagnosed with blood cancer you would not have a choice on whether to undergo such procedures.
So why not choose to do all this ^ and be a LIFESAVER. YOU can help make RemissionPossible.
So do I need to say it again? YOU CAN SAVE A LIFE. (and here, most people are eligible)
So celebrate World Blood Cancer Day with me, and sign up to be a stem cell donor.
If you have ever known someone who has had blood cancer, and don’t know how you can help, THIS is the perfect way!
Get it yet?
SIGN UP, TELL US, TWEET US…
You could change a life. Simple as.
So go on then….do it! It will be worth it, it is something you can be proud of, something you can put on your CV. We will appreciate it, and so will every other person who has ever had a stem cell transplant, or had blood cancer.
Sign up at http://www.deletebloodcancer.org.uk and join a worldwide community of 4 million incredible people!!!!
Keep smiling! (I will be if you sign up!)
How’s everyone’s week been…..busy busy busy for me!
For a start, as I told you in the last blog, I sat two AS level exams last week, on wednesday and thursday. Everyone I’ve told about doing exams thinks I’m crazy…..maybe I am, but heigh ho, craziness is the best!
Next order of business, my newfound welsh media stardom! Yesterday, as I assume many of you reading this will have seen there was an article on me in WalesOnline, and in the Western mail (http://www.walesonline.co.uk/news/wales-news/teenager-cwmbran-alerted-cancer-jeans-7153173#.U4OFyHOprPg.facebook). It kinda was an article about me, my cancer journey, and what I want to do with you all as a part of RemissionPossible. I was totally AMAZED by the articles response! One of the admins informed me that my article was the most read all day- aprox a whopping 24.5 THOUSAND VIEWS. According to an email we received, I was TRENDING!!!!
The article also had 1615 social media shares! Who knows how many people my story reached….
Still a bit boggled to be honest!
So if you’re reading this, and it’s your first time reading my blog, don’t be baffled by my craazy writing style-share it with your friends, and follow us. Actually, even if you’ve followed me since day 1, share this!!!
Now onto the main topic of today…..Hannah’s holiday home appeal. While my virtual self was busy taking the welsh media by a storm (!) I was fortunate enough to enjoy a holiday near the Coast, courtesy of Hannah’s Holiday Home appeal.
Hannah’s Holiday home appeal is a charity that fundraises to provide holiday for families whose children have been affected by cancer. They own two incredible caravans in Oakdeen holiday park and Hayling Island. Though I can only speak for the caravan I stayed in, they are possibly one of the most luxurious places I have ever stayed…..yes, I am talking about a caravan!
Hannah, the namesake of the appeal sadly passed away at the age of 10 in 2004 after having Hodgkins Lymphoma. It’s an absolute credit to her for dreaming up the holiday home idea, and to her family for the work they have done. So many of you probably don’t see the significance of a short weekend away in a caravan, but it was SO amazing. We all had proper family time together again. It really is seemingly impossible to thank Pam (Hannahs mum) as much as we want!
In all seriousness it was a pretty emotional weekend, in the main because there was a picture of Hannah on the fireplace and several scrapbooks detailing her journey, aswell as a visitors log. The visitors book was the only condition of staying in the caravan- leave a message in the visitors book before you leave. The book was full of peoples accounts of their holidays in Oakdeen, from all the way back when the caravan was first opened!
As I said before, it really is so hard to put into words what that holiday home being made available meant to us.
The best I can do, is just ask you to think how much your holidays mean to you, how much fun they are, how much of a break they are and how they are always looked forward to. So so so many families with children who have cancer, see holidays as a nice thought, but an unrealistic hope, especially while that child is on treatment. After all holidaying usually requires the ability to travel, time to plan and most fundamentally the funds to pay. Hannah’s Holiday Home Appeal provides the opportunity to holiday, without all of these stresses.
Check out their website http://www.hannahsappeal.org/
So the other thing I have that’s worth talking about is the progress I have made…… we now have 4 people who have joined the Stem Cell register, to become potential lifesavers!! Why don’t you join them by signing up with http://www.anthonynolan.org or http://www.deletebloodcancer.org.uk ? If you have signed up….or are considering tell us! We want to congratulate and persuade! The importance of having stem cell donors has never been so prominent, what with the #shake4mike campaign
New blog will be up soon, got a busy week ahead of Remission Possible stuff now exams are over!
Keep Smiling guys! (and share this blog EVERYWHERE)