Category Archives: Campaign
I hope this title isn’t too alarming. Don’t worry, my mother is still bringing me food, driving me places and hasn’t upped sticks and left after this getting too much for her.
What she IS doing is probably seen as just as crazy to the more horizontally inclined of us. It has involved 5.30am alarms, lycra and an attempted pasta ban (!)
Very soon she will be running the Cardiff Half Marathon, all in aid of Anthony Nolan.
Isn’t that amazing!?
Up until now our fundraising has been mainly based around for cake, me talking at people to persuade them out of their money and bucket collects. No lycra. That’s all changed now though!
Somehow my mum has ended up a runner. I’d like to think it wasn’t my fault, but that would be total delusion! I had originally planned to do the race myself, however my body had different ideas, and bone marrow transplants don’t train you very well for much beyond the sofa! Thankfully my mum doesn’t blame me completely and has another reason bar it being in replacement of/on my behalf.
Linking nicely with it being for Anthony Nolan, she wanted to improve her health- so that if she were to be called up to be a bone marrow donor for someone else, she would pass the medical.
See what I mean when I say my mum is fab!
Please, I feel I’ve kept it quiet but I really have spent most of this summer in hospital. It would have been incredibly easy for her to have given up, passed her place on and just not given herself the stress of juggling training as well as me/other 3 kids/ hospital/stuff.
I don’t want this blog to be all ‘my mum, my mum’….she does have her own voice.
“We started like so many as part of a New Years resolution. Couch to 5k was our aim. Week one after 43 seconds I was broken. Admittedly I hadn’t run since 1985 when I did 800 meters, but we kept with it. I have run every week since. Sometimes in the snow, around the car park while Emily has been in radiotherapy, sometimes so early Lobby isn’t up (!) We have surprised those around us and amazed ourselves.”
It’s not just her though- she has formed ‘Team RemissionPossible’ with two other school mums and between them they are also running for Bloodwise and Look Good Feel Better. All worthy causes I think you’ll agree. For me, between them they represent my passions in charity work to with cancer-
– Bloodwise are funding research to try and bring the day when all 137 types of blood cancer are cured, and make the treatments kinder.
– Anthony Nolan are finding lifesaving matches for people who need bone marrow transplants (need I say any more?!)
– Look Good Feel Better are all about making that time with cancer easier, by reinstilling women and girls with confidence in themselves. As a recipient of this charity’s work I can surely say if you look good, you do feel better!
So mum (Donna) , Rachel and Victoria, Tanya and Beth- I think you’re bonkers but amazing! While I had intended on doing the run myself, you would never have seen me tackling a 10 mile run on a Sunday morning, nor leaving early enough to be BACK in time to make breakfast! Heroes.
I’d love it if you could take a moment and donate some money towards their cause. The support will get them through the miles but MORE IMPORTANTLY fund the awesome work if the charities that have contributed so immensely into getting me where I am today. I can certainly say without the work of Bloodwise and Anthony Nolan I wouldn’t be typing these words, and without Look Good Feel Better I wouldn’t be doing it with as much confidence.
Remember, every little helps! Here’s their team page where you can donate to their induvidual pages https://www.justgiving.com/teams/Run4Remission
Keep Smiling (and running) 💃💃💃👟
Seeing as today has double significance to me, I thought I really should break my bloggy silence and get back to it, give you all an update on how I am, and what I hope this day can bring to general awareness of blood cancers.
I actually wrote a piece similar to this on this day last year, and then used the day to appeal for people to join the stem cell registries. Even though I have so much more of a connection with the bone marrow transplants world mow, I want to focus this on something else. Awareness.
Let’s be completely honest, how many of you know the symptoms of blood cancer? I know I certainly didn’t before diagnosis, I just had a good bodily awareness thankfully. With someone diagnosed with a blood cancer every 20 minutes in the UK alone (that’s around Thirty THOUSAND people EVERY YEAR)
30,000 seems like quite a lot to me really. A mind bogglingly large amount of people for a country the size of Britain.
So let’s be aware, yes? That way we can protect ourselves and those we love, so that if awfully enough a blood cancer does occur, we have the skill set to spot and flag it up- giving that person the best chance of recovery.
Read these and remember them as symptoms. Of course if you do have one of these, the chances are it’s really not cancer.
Be aware of:
-Bruising easily -Persistent Fatigue
-Weight Loss -Fevers
-Repeated Infections -Unexplained Bleeding
Now that I’ve said my piece, I can tell you how I am! In my opinion, I am doing well, despite some difficulties. As I said above, today is exactly 4 months since my transplant, AND my last day taking ciclosporin, the main immunosuppressive drug. This means that my transplant has fully grafted and that my (brand new) immune system can begin strengthening itself again! So a very exciting day!
I have had some problems, repeated dalliances with the CMV virus (an underlying virus, similar to the one that causes glandular fever and only causes problems when on immunosuppressive drugs) and some lung issues that have meant I’ve needed a bronchoscopy, plus a slightly swollen face…BUT I haven’t had any Graft versus Host Disease SO these are minor issues really. They’ve just meant I’ve spent more time in hospital than anticipated and hoped for.
My muscle strength has been improving, and I can now walk fair distances, which is reassuring. I’m planning for this summer and beyond now I’m beginning to feel a lot better…including plenty of restaurant visits (food is the topic of the next blog!)
Some of my closer friends and family will already know about Pie Day. Chances are if you’re a recent liker or follower of RemissionPossible you won’t have heard of it. Get ready to embrace a whole new family tradition this Christmas. Pie Day.
Now you’re listening. Everyone loves a new family tradition don’t they, whether it be the unspoken rule of not going out over the Christmas week, religiously watching the Queen’s speech or making everyone at dinner table eat a sprout. Christmas truly is a time for making the family do funny, nostalgic and ridiculous things in the name of making more family memories.
This December, save the date for the 27th of December (day after Boxing Day) because we want to see you spend it eating pie.
So why Pie Day, and why I am I making all of you do it?
It started off as a personal family tradition, when my Dad decided if we make use of Turkey Leftovers, we should make use of gravy, sprout, roast potato and other leftovers. After the cold meat day of the 26th, he made a pie of left over Christmas dinner ‘stuff’ and served it up to us. He jokingly named it the pie of all pies, and for that day to be the day of pie making, perhaps never expecting us to go on about it again.
Until the following year, when in December, we watched a Jamie Oliver programme where he was making pie, and I decided we should make it at some point. Seeing as we had pie of the 27th the year before, it was made on that day and the Day after Boxing Day has become Pie Day in my house ever since. My family, the six of us love Pie Day. It is one of our favourite family traditions and I joking have encouraged friends to partake in it, until Christmas 2013 which changed things.
Last Christmas (I gave you my heart) and Pie Day became something new, something beyond just my family. I knew I was going to be in hospital all over the Christmas period and my church and extended family wanted to do something to help, or just do something to let me know they were thinking of me, without having to have the awful ‘So you have cancer…’ talk with me. Pie Day was this outlet.
After my mum text everyone in her phonebook, and Cathy my minister spoke to the congregation we had around 50 people take part in Pie day last year. Most of them sent pictures of their pies, I had a letter off’ve one lady who had typed and specially printed the letter so it had pictures… Some of my best friends got together and had a pie making session with some of them delivered to my house, to put in the freezer so my family could eat without having to cook properly. I had tons of pictures sent to me of friends eating pie- even I it was just the humble mice pie or a big celebrity chef inspired number.
This year I want Pie Day to be bigger and better.
In years gone by, Pie Day was a fun family tradition, which dragged out the proper Christmas festivities out a bit and was massive fun. Last year, Pie Day became something else. It became a known event sure, but it also became a mechanism to show someone you’re thinking of them, and to be a time to think about whose family members or friends you can’t be with this festive season, for any reason.
I would love more people to get involved this year.
Pie Day can be what works for you. It could be you delivering a pie to someone lonely or in hospital. It could be you sitting down with a mince pie and emailing friends and colleagues who need to hear a friendly message at what can be a very hard time of year. It could be a time to invite relatives not close enough to come for Christmas Dinner over and spend time with them. It could be, as it was originally for us, a fun gimmicky tradition to use leftovers. It could be your excuse to buy that giant pork pie. It could be whatever you make it to be.
It may seem like a strange thing, a charityish blogger, urging you all to eat pie the day-after-boxing-day, without asking for donations. That is not what I want. I want it to be a time where you sit back and be with or think of those you love, and just be. Not much of Christmas is like that, not really.
Obviously, I’ll be celebrating Pie Day, just as much as any other festive day, and in much more style than last year. Last Pie Day I was recovering from having my Hickman line in, I still had my chest drain in and I was just a general medical mess. I’m not entirely sue whether I even ate any pie!
I just hope you all decide to join me in eating pie this 27th December. I want to hear your recipes, see your pictures and just spread a bit of love on social media. I know there are some of your reading this who were bitterly disappointed that they for one reason of another were unable to sign up to be a Stem Cell donor. Maybe you could spread the #RemissionPossible love through your pie making skills!
My mum is desperate to have a Pie Day cookbook made, so maybe with your support this year, it could become a possibility for Pie Day 2015.
Thank you for all the recent support, I really hope loads of you get involved!
Keep Smiling (and pie planning)
P.S. As always, I want to see you signing up to the register! If and when you have, we want to see you doing your swabs/spits on social media to help spread the word. Send us a pic using #swabspitselfie to @remissionpos or post on our Facebook page (www.facebook.com/remissionpossible2014)
If you forgot (as many do) to take a #swabspitselfie take a picture of yourself with a piece of paper saying that you’ve signed up to become a lifesaver, and why. Unleash that bragging power!
P.P.S you could be a lifesaver.
To sign up…
If you’re 16-30 years old sign up at www.anthonynolan.org
If you’re 18-55 sig up at http://www.deletebloodcancer.org.uk
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,
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.
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
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
Another week, another blog!
This week has been particularly eventful, both with my own stuff and RemissionPossible.
Number 1 and probably MOST importantly is the fact Beatrice, awesome Beatrice…..IS IN REMISSION!!!! YAYYY
She found out last week, and I am sooooo incredibly happy. Gorgeous Bee got me through my own treatment with our Mastercheffing and food cupboard raiding.
Cheering, celebrating and crazy Em dancing aside.
In the past week donations for the gift boxes have been FLOODING in! We have more hats and earwarmers than ever, as well as skincare packs from the UltraCalm Dermalogica range, scarf and bath fizzer gifts from Lush Cardiff, a multitude of books from Orion Books and a load of products from QD stores!!!
The people who have donated products will forever become part of the RemissionPossible Family and I will always be grateful to them.
This progress is SO SO exciting for me, as the boxes begin to get ever closer to being able to be launched in TCT Cardiff.
Remember, even though TCT boxes haven’t been launched you can order a teen git box, or an any age information box…RIGHT NOW!
As well as kindly donated products I have received leaflets from Teens Unite Fighting Cancer, Ellen Macarthur Sailing trust, Leukaemia and Lymphoma Research, Teenage Cancer trust, Tenovus……A massive array of leaflets designed to be informative and helpful for people diagnosed with cancer.
As have said above if someone you know has been diagnosed with cancer, whatever age they are, whatever their diagnosis, If you want to give a meaningful, thoughtful, HELPFUL gift, in a time when helping seems impossible, please request a gift box. All we ask is a donation towards shipping and box costs, all items within are donated. We just want to help.
Now onto me! -I have been very busy, hopping around the place for choir concerts! I guess many of you reading this blog who know me will know that I m a member of Torfaen music centre gospel choir. Personally I think this past week has been the best that the choir has ever had!
On Monday we performed with other greater went groups at St David’s hall, in Cardiff. I LOVE performing there, the atmosphere was great, and I had some delicious noodles for lunch!
The other concert with choir I was preforming at was the Music for Youth national festival in Birmingham. Many of you who are/have been involved in local or regional music groups will know what a BIG DEAL it is to be asked to perform in National festival, so as you can imagine I was SO excited to be going, especially seeing as I missed the regional rounds of the festival due to being in hospital.
Now, not to blow our own trumpets in the slightest, but in Birmingham on Wednesday…. We were AMAZING! Easily the best concert we have ever done!
Finally some other super-duper cool news…..*drumroll Please* I am once again going to be in the news! I will be back on Wales Online AND on ITV wales!!!!!!!
ITV are really interested in RemissionPossible, and I am so happy that this round of Media interest is focussed on RemissionPossible and our work that I’m trying to do… and not a sob story.
The thing is I said Beatrice’s News was probably m important….EXCEPT for some breaking news- Hollie Clark, @helphollie and the innovator of #pantsonhead HAS A MATCH!!!!!
(hollie isn’t my sister by the way, just another Hollie Clark)
⚡️NEWSFLASH⚡️IT’S THE TWEET, HOLLIE HAS A MATCH💣💣💥💥SINCERE THANKS to all who helped, u know who u r. ❤️u all. Wont stop tho, more to help✊
— Help Hollie (@HelpHollie) July 11, 2014
This blog isn’t the longest one I’ve written, but my little sister is turning 5 tomorrow and I need to get some shut-eye before her Fancy Dress Party (help me!)
Keep Smiling, chatting about us and being interested (if you own a business gimme a bell!) It’s been a successful week all round!