Blog Archives

Santa Run for Bloodwise

Fancy getting yourself on Santa’s good list?
Need an excuse for ‘just one more’ mince pie?
Fancy showing the kids you’re not that unfit?
Want to help us save the lives of people with blood cancer, now and in the future?

OUR FAMILY SANTA RUN COULD BE THE EVENT FOR YOU!

As a child, the local Santa run around Croesyceiliog and Cwmbran Boating Lake was a big part of the run up to Christmas. Though admittedly I never took part, as a family we would go along to cheer on the runners, pick out our favourite Santa costumes and put some money in the buckets for charity. It was always a great morning out, a real community event where with runners and spectators, hundreds of people would be together, getting into the Christmas spirit. I would be waving my letter hoping to spot the real one.It’s now been several years since the last run, and we have decided to do something about it!

We want to create a fun filled morning, where everyone can enjoy a bit of pre-christmas cheer in the fresh air, get the community together- just do something that doesn’t involve hospitals….somewhere my family has spent the last two Christmases centred around. All this and raise some well deserved dosh for Bloodwise!

So who are Bloodwise?

Formerly Leukaemia and Lymphoma Research, Bloodwise were set up in 1960 by the Eastwood family after their daughter, Susan passed away from Leukaemia. The charity helped set up the first ever research unit dedicated to blood cancers in Great Ormond Street, and have played a huge part in seeing that 2/3rds of people diagnosed with Leukaemia, lymphoma or other blood cancers survive 5 years. In 1960, almost everyone died of their disease.
Yet they still have so much to do.

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Bittersweet Anniversary.

These past few days have been very strange for me, and emotionally I’m not quite sure where I am.

The 17th of April was the 1st anniversary of the first time I went into remission, and I felt like I ‘should’ be doing something with that day. Had I not relapsed we would have hugely celebrated the day, because of the significance. I’ll definitely be celebrating my ‘remissonavesary’ on New Year’s Eve, but what about that day? I’ll probably never know what to do with April 17th again.

The 17th was meant to be a day of celebration, so when it its previous significance is made null and void, what am I to do with the day. Maybe this is how divorcees see their wedding anniversaries!

Thankfully, at the moment I am well, so at least I haven’t spend these days ill. I am nearing 4 months in remission, and am almost 12 weeks post-transplant, so I have a lotto celebrate. I am eternally thankful to be regaining my health, despite my confused emotions recently. A dear friend, who I met through hospital passed away earlier in the week, so that has weighed heavily on me. So much of the time in this cancer journey I forget that getting better isn’t a guarantee, that we’re not just sick kids waiting to recover. I forget that we lose people, wonderful smart people and that remembering, that loss is so hard, on everyone involved.

So that’s the bitter of the past few days…the sweet?

RemissionPossible has been up-and-running for a YEAR!!!

I feel I have something to do in this blog, tips to share, a world to uncover, awareness to raise and a general feeling I can somehow serve this reluctant community. I’m not blowing off what I’ve said above, by continuing onto a different topic, but doing what always want to, in spreading positivity and (hopefully) some light humour.

I honestly cannot believe it has been that long! I can honestly say it doesn’t feel like that been a year, it still feels like this bright, new ‘thing’ I’m working on…. Perhaps I have a blogging duty now, my game needs to be upped. I’m no newbie any more.

I really do hope that writing these blogs and creating this platform is making some sort of difference.

Speaking of what I’m doing, and trying to make an impact doing- Our Annual Afternoon Tea is next Saturday 25th April in Llanyrafon Methodist Church in Cwmbran, starting at 2.30pm. It was a great day last year, and we still have some tickets, so if you fancy eating cake AND feeling good about it please come along! Tickets are £7.50 each and the money raised will go to Leukaemia and Lymphoma Research. If you fancy coming, you can reserve tickets through our Facebook / Twitter pages.

This is only a short blog today, I felt I wanted to say something on this date, the significance both good and bad of this week, but in writing haven’t really had any idea how to put it into words.

I hope you’re all well, Keep Smiling,

Emily

Guest Blog: Why I Joined Marrow.

This guest blog is from Ellie Philpotts, a Cardiff Uni Student and staunch Marrow supporter 

When you join university, you’re thrown into a new world. Societies are all scrambling to recruit you, usually with the lure of free food; Dominos are handing out pizza in the hopes of getting their local branch on your radar (which probably doesn’t need much persuasion); clubs compete for your attention via the cheapest Jager-Bomb, and lecturers are trying to regain their last threads of sanity reminding students to actually attend classes during those crucial first weeks. But amid this relentless craziness, one society caught my eye – and, sorry to be clichéd, but, also my heart.
Considering this is my guest blog for the amazing Remission Possible, a charity/site set up by blood cancer fighter Emily Clark, you may not be surprised by my revelation that this society was… Marrow!
Most big universities now operate a branch of Marrow, the brainchild of Anthony Nolan, Britain’s main blood cancer charity. Their primary mission is getting the public on the bone marrow register, and Marrow is the side of it that’s both run by, and generally aimed at, students. This means we host recruitment drives at uni, signing eager students (consenting, of course!) onto the bone marrow register, which means taking a simple saliva sample from them. We also arrange events such as our successful Variety Night last month, featuring an array of comedy, dance and live bands, and carolling in Cardiff city centre around Christmas, raising awareness and donations. The Marrow team was the first society I joined when I began at Cardiff University in September 2014, and although I’m also part of many more societies now, they’re definitely my favourites in that they’re the ones I’m most passionate about. So much so, this week I’ve been confirmed to have the role of their Media Coordinator, starting in September. This means I’ll be in charge of our social media, namely Twitter and Facebook updates; Public Relations and Marketing – responsibilities including getting the word out there of Cardiff Marrow, wider Anthony Nolan and actual bone marrow donation; informing of our specific events; and liaising with the public and local/national media to make our amazing cause even more well-known around the ‘Diff and beyond.
So I’ve said about how I completely don’t regret dedicating my rare free time at uni volunteering for Cardiff Marrow. But what actually attracted me into joining? No, their stall at Freshers’ Week was a rare one which didn’t boast free food – simply because they don’t need to rely on things like that. The knowledge that you’re truly helping to save lives kind of beats even the nicest slice of pizza!

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In January 2011, when I was 15, I was diagnosed with blood cancer myself – Hodgkins Lymphoma to be precise. I finished chemo and steroids in May 2011, receiving most of this at Birmingham Children’s Hospital. Through Teenage Cancer Trust, I’ve met so many incredible people, many of whom have had transplants themselves. People with mine and Emily’s form of cancer, lymphoma, often need bone marrow or stem cell transplants, like Emily herself began this year, and I realised that could’ve easily been the case with my specific illness.
In 2012, a girl in my cancer group, Becky Bishop, who also had Hodgkins, died aged only 16. She’d began the transplant process herself, and greatly inspired me during my recovery. I’d say the combination of my own case; Becky’s situation and seeing so many others struggling to find donors really launched my passion of Anthony Nolan’s work.
I’m really looking forward to starting my Cardiff Marrow committee role and would love to work more with Remission Possible through this. Emily’s venture is an incredible idea and she’s doing amazingly, running this while undergoing the effects of her transplant. Emily, you’re a massive inspiration to me and many others. Keep on Remission Possible-ing and I’ll keep Marrowing 🙂

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

A Week of Public Speaking…

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.

Me and Simon Weston!

Me and Simon Weston!

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.

1062988_1581511465401980_549278671_n‘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!10743405_1581509612068832_462219396_n

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’

Keep Smiling!

mayor

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!!!

Why I love…Fundraising

wpid-img_20140915_195945.jpgWhy I love….Fundraising

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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Torfaen Bikers Big Challenge

This isn’t so much a blog, more me telling you about four guys who are doing some AWESOME fundraising this week.

The ‘Torfaen bikers’ – Andy Cole and three friends will be cycling Llandudno to Cwmbran over three days, starting tomorrow.

This is basically the length of wales, and a mahooosive 196 miles!

They are doing the challenge for the super-duper Leukaemia and Lymphoma Research, on behalf of us RemissionPossible and in memory of Ken Morgan (as well as for Andy’s 50th birthday)

PLEASE SPONSOR them, and share this post, and help them out!

They want to raise £1000 by the time they arrive in Cwmbran on Saturday!

Their just giving page is http://www.justgiving.com/torfaenbikers

Tweet it, share it, donate, do it!

Keep smiling Cyclists

Em x 😎☑☑