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World Cancer Day

Today, Wednesday February the 4th is World Cancer Day. It’s a day you may know nothing about, or only know of from sharing a picture of a candle on Facebook. You may have guessed something was up from the constant news that now, instead of the 1 in 3 statistics we are accustomed to, we now have a 50% risk each of developing cancer.10967809_1623578781195248_1155630041_n

For me though, it’s a little more than a ‘share this if…’ picture day, and more than just a # on twitter.

It is a day to remember and hope, a day to learn.

The announcements of increased risk for all those born after 1960 needs to mean something. We need to take this day, this world caner as a day for change and action. Allow this day to mean more than just one where you like a Facebook post.

We need to stand together, reduce personal life risk, educate ourselves on symptoms and take responsibility of our own health- so we can prevent cancer where possible, spot cancer early when it does develop and see screening save lives.

Currently 4 in 10 cancers are potentially preventable. Think of the impact a change in lifestyle could have rationally. Currently half of all cancers are diagnosed after they have spread. Think of the impact education could give to thousands of people, in cases where secondary cancers mean an ‘incurable’ diagnosis. Currently too many people are skipping routine cancer screening. Think of the impact if everyone who got a cancer screening letter in the post actually went to their appointments, as above cancers would be detected earlier and could improve prognosis.

I know these things won’t save everyone, and some people will be diagnosed after their cancer has metalized, but surely making an effort with the above can only improve things.

The knowledge applies to all ages. Recently someone two years above me in school was diagnosed with Hodgkin’s lymphoma. This means that between the pupils of three consecutive school years at my high school, 4 have had cancer by the time the oldest is 20. And that’s from my working knowledge. The risk of having cancer by 24 is around 1 in 282, which is relatively low risk, but in the statistics game this meant I was the second person in my school year diagnosed by the age of 16.

We all need to be aware. We need to unite in this fight and never let cancer have any sort of chance.

We need to support the researchers, the movers and shakers, the little fish with big ideas and those tireless campaigners funding the research. They are finding better treatments, kinder treatments and hoping for a day where all cancers can be cured, and during that treatment time you have a great quality of life.

So go, educate yourselves! Knowing will not make you any more likely to have cancer.

awareness-card-Ted

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And in adults…

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Change things up!

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Today is for all those I’ve met along this journey- Chloe, Jade, Beatrice, Both Tom’s, Jacob, Yusuf, Cory, Dan, Cameron, Tina, Sonali, Ffion, Hwyel, Jordan, Libby, Beau, Elenid, Harriet, Andrew, Catrin, Louis, Alex, Dave, Amy, Rosa, and so many other people….

And especially for those we’ve lost, Pauline, Becky, Joe and a big inspiration, little Margot. There are others, inspirations and many I wish I could have met.

Hope you take something from this blog today. Its a bit emotional for me, managing my first blog since transplant and carrying what I see to be an incredibly important message.

Keep Smiling,

Emily

 

It’s not over til the Fat Lady sings.

Some bad news today I’m afraid.

It’s something I had always hoped I would never have to blog about, and something more frightening to those affected by cancer than the initial diagnosis. I can’t quite believe that I’m writing this blog.

Relapse, recurrence, end of remission are just three ways to describe it.

Yes, s**tily enough, my cancer has come back.

*inserts crying, swearing, and general negative emotions here*

This is why I’ve been so quiet recently, in blogging and social media.

So, as of last Thursday, when I got sat down with my consultant and told the results of my scan, I am once again a cancer sufferer/patient/whatever. I have Non Hodgkin Lymphoma, again. This time, I’m 17. This time I have a university application to cancel. This time I’m being open about it, broadcasting almost. This time I might need YOUR help. I am of course devastated, I had just applied you University and my life was getting back on track. There’s not much point in moping over it all though.

Now I’m not dying, please don’t think that. There is a plan, there is treatment, and I will get through this again. Second time round though there are quite a few differences in approach.

I’m going to need a Bone Marrow (stem cell) transplant. The very thing I’ve been harping onto you all about infrequently, is now going to save my own life. Seeing as chemotherapy clearly hasn’t gotten rid of my cancer for good, this time we’re bringing out all the weaponry, guns blazing to kick this cancer’s ass, good and proper, and forever. I will have more chemo, and then the transplant.

Some of you may be in the know, but a bone marrow (stem cell) transplant involves the donation of stem cells from someone with matching HLA groups, which ae transplanted into someone who needs the ells, to beat their cancer or other blood disease. The donor will be a living person, who will not suffer any major side effects from donating, just the knowledge that you have helped potentially save someone’s life.

My transplant donation will come from someone selfless, as above. My 15 year old sister will be tested to see if she is a match for me, but this is only a 25% chance. The likelihood is that I will have cells donated from an unrelated donor, a stranger. A hero.

If I have a stranger donor, it will be because they signed to a registry and made a ‘pledge’ that they would donate if they were ever needed.

I’m asking something now of all you reading this blog. Please, if you are able to sign up to be a potential Bone Marrow (stem cell) donor. It will increase the chances of there being a match for me when the time comes, and could help one of the other 1,800 people who will need a transplant this year, in the UK alone. Or you may help someone net year, or the year after, or even someone overseas. The possibilities are vast.

This Bone Marrow donor business, is something I guess most pople will at least have heard about, especially if they are a follower of this blog. The thing is, it’s not just someone needing you to become a lifesaver. Now, it’s me- Emily Clark, the teen pinning these words down, the girl who aspires to be a doctor and loves to sing is the one urging you to join a registry. If it has been something you’ve just scrolled on past or dismissed as irrelevant SIT UP AND LISTEN. It’s real for me now. Really, really real. I hope an emotion within you, whether it be sorrow because of my cancer returning, empathy and pity for ‘that’ girl with cancer, or admiration incites a want to SIGN UP.

There is more concise information on my Become a Lifesaver: Join the stem cell register page, but for now, focus on what your reaction would be if I were your sibling, child, parent, family member or friend (maybe I am) would you immediately sign up? Would you offer to be tested to see if you could donate? If the answer is yes, then please join the register, or at least enquire to find out more. Do it for me, do it for the other 1,800 people.

So many of you, when faced with bad news think ‘I wish there was something I could do to help.’ To put it frankly there is.

If you are 16-30 years old, sign up to be a lifesaver via www.anthonynolan.org

If you are 18-55 years old, be a hero and sign up at www.deletebloodcancer.org.uk

I can’t ask in any other way, and I hope what I’ve done shows quite how important this cause is.

Imagine the impact if everyone reading this signed up, and then got Just One More to sign up, who got someone else to sign up….so on and so forth. We could make a massive difference. I say we, it’s only you who can get the ball rolling.

This has been hard to write, and even harder to post, but I hope it makes an impact.

I’ve been in remission once, and I will be again, hopefully soon. I’ve said before, together we can help #makeRemissionPossible

I’ll keep you all up to date on me, I’m having my Hickman Line put in tomorrow.

Keep smiling,

Em x

Why I love…the Teenage Cancer Trust

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.

For many Halloween is terrifying, and seeing as I’m sat here blogging you can tell I’m not the biggest fan of such frights. images (1)

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.k

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.

 

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I inhabited the best at the front of the picture for the best part of 2 months, which when I was put in another bed resulted in my mum walking in on the poor girl in it several times!

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!)🎃

-Em xx

 

Why I love…the NHS

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.
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Back to School and Bucket Collect

 

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
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What NOT to say to a cancer patient!

So here is another guest blog, this time from a friend, Amy. We met at the Clic Sargent Music residential, and she writes a funny blog at http://littlemisssurvivor93.blogspot.co.uk/ I hope you enjoy this, she is an awesome girl and a great friend! (more from me at the bottom!)

 
What not to say to a cancer patient.

 When you don’t know what to say to a cancer patient and you find you end up saying something that was clearly not well received, you’ll find that generally they will forgive you (eventually).

However, in an attempt to save you from this horrible moment here is a list of some of the things you should just never utter to a cancer patient (trust me): and for the rest of you, something to laugh about, as it’s happened to all of us!
 
1) “You’re looking great!”
 
No I don’t! I still own my mirrors (as much as I kinda want to avoid them) don’t you think I know
that the treatment has made me look like I have the body of the Michelin Man with the head of a shuttlecock sewn on?
But if you mean to say “ooh for a girl with cancer you look amazing” then thanks, yeah I do, my
chemo brings all the boys to the yard! I wish…
 
 2) “Half the battle is the mindset. Be determined to beat cancer and you will.” 
This is simply not true in any way, or most cancer patients that died would still be here. Yes it’s good to think happy thoughts, but It will not save your life, only your sanity.
 
 3) “At least it’s not on your face or somewhere they could see the scar”
 
Yeah, because it’s so much better that it’s traveling about around my vital organs! I should
maybe do the Braveheart style line now: they can steal my organs, but they’ll never steal my
freckles! Somehow I don’t see how my cancer playing hide and seek has a positive aspect.
 
 
4) “oh you have cancer? My Gran died of cancer, in the liver, it was painful. Then my family friend died of bowel cancer, it was really slow. Ohhh do you know who else had cancer…”
 
That’s right, please comfort me with a list of all the people you know who died of cancer. Next
why don’t you tell me every horrible detail, oh wait you already did!
 
5) “I know how you feel… I’ve got a terrible cold right now”
 
You’re right, 200 years ago if you lived in squalor conditions you might have died! But it’s not soman up, and get a grip! Cancer and a cold are not the same, in any way!
 
6) “Lance Armstrong”
 
Stop comparing every cancer patient to him or be prepared for that patient to muster up some
strength to punch you!
 
 7) “Why are you gaining weight if you are so unwell?”
 
That’s great, as if I didn’t already feel like I looked terrible enough! For your information, cancer patients usually get pumped full of steroids. It was either that or I puke in a constant stream, you decide? PS. I can’t believe you basically just called a cancer patient fat!
 
 8) “How are you feeling”
 
I know you think you’re being nice but all a cancer patient thinks as soon as you say that is:
How the hell do you think I feel, I have cancer, how would you feel?
And, it doesn’t help that they are asked this question thousands of times a day.
 
 
9) “Chemo doesn’t work. Try bathing in goats cheese, wearing a hat made of mud and smoking banana leaves. The government is covering up the natural cure”
 
Just get out my room you crazy, conspiracy theory, hippy! p.s. Shave your armpits mrs/mr natural
 
 
 10) “I just keep thinking how lucky I really am”
 
 Well I’m glad I could be of service! Don’t rub it in! I’m glad you feel blessed but share that somewhere else.
 
 
  11) “I don’t know how I’ll cope without you!”
 
 Well don’t start making my headstone just yet…and please try and grow some optimism
 
 
  12) “It’s okay you can live on fine without [insert body part/organ]”
 
Yes I’ll live but don’t just push it aside like that part or me wasn’t important. I kind of grew
attached to my body parts over my lifetime you know!
 
 I hope this was a little helpful for everyone, just remember if you don’t know if what you are about to say is going to be well received by the patient, just don’t say it!
 
-Amy!
 
Did you like it? I did!
So a quick bit of Em news- the reason we’ve had another guest blog this week, because I’ve been working on a guest blog for  Chris’ Cancer Community, about the back to school time of year! It’ll be posted on Sunday 🙂
I’ve also been invited to the bigmoose ‘Elevation’ Gala Dinner as a guest- find out more here☑ http://www.bigmoose.co/events . I’m very excited about it!
 
Hope everyone’s well guys!
– Keep Smiling!
Em xx
 
 
 

A Mum’s Message

This week we have a guest blog from my mum, Donna, and her take on what having a child with cancer means, for the whole family.

When Emily was diagnosed with cancer our world changed in an instant forever. I now view the world different. I feel empowered to make a difference and give something back to the many charities that have supported us.  I have done voluntary work for over 20 years. This has given me new momentum.

As parents, many of us joke about wishing our children came with an instruction manual.  Especially when they are babies. It’s a good job they don’t.  I may have sent them back with fear about what laid ahead.

My mother would say its because my house is unlucky and I should move before someone else is stuck down by some disease or condition. Ironically, since moving here my children have been diagnosed with Type 1 diabetes, epilepsy, asthma, dyslexia, dyspraxia, and Cancer.  But we have also been blessed to be able to add to our family. We don’t feel unlucky but the complete opposite. We are so lucky to have these children. They enrich  our live beyond  words.
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Me & the CLIC Sargent Music Resedential

This week its rather a bit more of a ‘me’ blog, though it does seem such a while since I wrote that blog about results day, and I have been up to a lot since then! By the way I also hope that everyone picking up their results were happy with them!

So what have I been up to since then?

Well I spent the beginning of this week from Monday to Thursday, at a music residential run by Clic Sargent. It was held in Stonar School, a boarding school near Bath (posh right?)

Now, for lack of more words and sophisticated description …..It was AMAZING!!!

I honestly cannot describe what an awesome time I had… but for the sake of this weeks blog I will attempt to do so!
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World Blood Cancer Day.

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.Screenshot_2014-05-27-20-28-21-1

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!)

Em xx