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.
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
A change in focus. A change in priorities. A change in what matters most. Something I’ve experienced and heard so much in the past few months. Cancer really has a way of throwing everything up in the air, with it landing in different places than thrown.
As I imagine everyone reading this knows, tomorrow is A level results day, regardless of how they know. It could be a son/daughter of yours, a friend, or even you just know because of the news. For some reading this, it will be their own results day tomorrow, and they are reading this blog to distract themselves from the butterflies of (what they think will be) impending DOOM. I’ve been in that place before, last year I picked up GCSE results, and really I should be chewing my nails, waiting in dreaded anticipation. But I’m not, not quite.
Some of you won’t know that I was an AS student before I got diagnosed, and because I did have 3 full months in school (sept-Dec) last year, I did sit some exams. Nowhere near as many as I should of, only 2. So instead of getting four AS’s tomorrow, I’ll be getting two unit one exam marks. So of COURSE I am nervous for the results. I want to have done well in them. The significance just isn’t as great as before.
Just to be in the position to be getting results at all tomorrow is an achievement, no matter how much I sometimes feel of lesser significance to my classmates who’ll be getting full results sheets. I do feel like that, partially because I feel that should be me, partially down to insane jealousy, partially down to the awful feeling that I should have made it happen regardless of my diagnosis.
Thinking I should have learnt my course in hospital is ludicrous, and I know that. Feeling inadequate is ridiculous as well, but it’s something that I just can’t help. Envy is horrible, yet the most natural of all. Education wise, cancer puts you in a pickle!
At the end of it all though, I know I’m lucky. Lucky to have sat those two unit ones (against my Dr’s advice! She recommended a year’s rest). Lucky to have beaten cancer, and be able to return to school in September. Lucky that cancer swept in and messed up my AS levels, something people take at any age, rather than coming in a year earlier and messing up my GCSE’s. I am SO SO SO thankful I got diagnosed after GCSE’s. I know from experience how that has messed people up.
To say my experience hasn’t changed me would be a lie. Same girl, changed outlook. I always was a fan of school, and appreciated it, yet I would complain about it on occasion. I think I can firmly say now, that won’t be happening again at least not in my heart of hearts. Some of the most upsetting things, most offensive things to read during treatment weren’t nasty comments, or remarks about cancer were posts on social media like-
“Hate sixth form” “f**k A levels” “can’t wait to drop out of school”
Sure, they were just fly away comments, and would never hold anything against anyone who said something similar, but it was awful to read. I would be sat, in hospital, ill, thinking about what would give to be able to take a seat in the class for them. Something to think about- if that’s me, a girl who still had massive prospects, knew she would be going back to school felt that such comments were a stab in the heart, imagine what a girl who has never been able to go to school, or a girl who is no longer allowed to go to school due to oppression feels? At the end of the day I am lucky. Blessed. I will never stop saying, and being thankful.
So, the night before the big results day, a change of perspective. The camera of my mind switched focus, looking more at the right now, and my dreams as opposed to grades, figures and league tables. I now just want to get to university, though I want good grades still, I wanted to have the best grades possible before. Like I said I would have been fretting so much over results right now. Though I will be devastated to fail tomorrow, I have so many options. Exams are a means to an end.
That’s just what I want to hit home to people. Though passing is so important, not doing well isn’t the end of the world. Exactly the same as getting cancer- not the end of the world. It’s how to take to that news that matters, how you continue on. Continuing on, for if I’d known I would be picking up grades tomorrow back in January, it would have been some of the best news I could have heard!!!
So, I urge you all, enjoy tomorrow! No matter what the day brings, think ‘I did it!’ no matter what the ‘it’ is.
Good luck all, I hope you all get what you want. I REALLY hope you all get what you want. You’re all beautiful people for reading this.
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
So, hair loss. Fun topic eh?
However not fun, or exciting it is, it really is something I’ve felt the need to write about for a while now, and I’ve only recently felt totally in the right place to do so.
Hair loss, it’s something that I’ve been through, and so have countless other men women and children in their treatment of chemo, and sometimes Radiotherapy. Of course some other illnesses also see it occur.
As a scientific explanation for the seemingly baffling side effect of hair loss-
“Hair loss occurs because chemotherapy targets all rapidly dividing cells—healthy cells as well as cancer cells. Hair follicles, the structures in the skin filled with tiny blood vessels that make hair, are some of the fastest-growing cells in the body. If you’re not in cancer treatment, your hair follicles divide every 23 to 72 hours.”
The thing is, during chemotherapy, these cell don’t divide. Meaning the hair follicles haven’t got the cells required to stick the hair ‘in’. So, voila! Out it comes. Perhaps that’s a bit blunt. I do know the VERY scientific reason your hair follicle (and cancer) cells stop rapidly dividing. It’s because the cells spindle fibers are restricted. (I learnt that while dong my biology exam!)
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!
I’ve had a busy week as usual this week! (yes I am aware I say that most blogs!)
It hasn’t been the MOST productive week al round ,but despite that I’ve gotten plenty done!
Personally, I’ve done a lot of stuff that was ‘normal for me pre-cancer. I’ve been to a 18th birthday party, spent all week in school AND have done a concert with my music center! yaayyyy.
I love performing with all those guys and the small concert was perfect to set me up for singing in St Davids hall in Cardiff, then with national festival (Music for youth) in Birmingham……Exciting stuff, I’ve got a few jam packed weeks coming up. My choir hasn’t been invited to preform at national festival before, so it’s a great opportunity- I’m just glad I’ll be able to preform with them in Symphony hall!
There’s no real topic to this blog, just bits and pieces but I think I’ll be doing one on hairloss, Hospital food, and probably Hickman lines soon. If you want a particular topic say, or vote to help me decide which of these is my priority….. Just give us shout!
Now onto more RemissionPossible style stuff…
What has my aimless blabbering got to do with the Italian job? Well, my latest collaboration!
I have been working with Rebecca Domino from Italy, an author and journalist who’s trying to change the way of Italian perceptions on teenage cancer. In her research for writing a book she discovered the difference in attitudes to and facilities for teens with cancer. We have discussed the difference in provisions for those like m in her country and as a result she has launched ‘Adolescenti e cancro’ (teens and cancer) to change things in her country. Our collaboration at the moment is focussing on links between RemissonPossible and Adolesceni e Cancro to try and help both projects to do well ,and to generally help teens in Italy.I am currently in the process of making two slideshow filmy things, produced in Italian and English that will talk about my story and how it has compelled me to set up this website and project.
It should be made by the end if next week so keep your eyes peeled peeps!
Possibly or most exciting news of the week is the gift box project progress!
The skincare brand Dermalogica have confirmed they will supply the giftboxes with some products from their Ultracalm range of products which they specially recommended after my request. Dermalogica say that the Ultracalm range ill be idea for skin that will be sensitive due to chemo….I am honestly so so so excited about it all. We also have donations from the beauty company Lush in the pipeline.
This means that as well as being able to request an information box, you will now be able to request a gift box!
To find out more on what a information/gift box contains look here!!
I now have two big shout outs to make…..
Number one is to Pauline (you know who you are) for the incredible number of knitted earwarmers you have made for us….We love you! Of course we love all of our
earwarmer-makers, but Pauline is awesome- She’s donated LOADS!👸
Number two is to Jade who was a very good friend during my treatment (and now!) We sent many an evening moaning about hospital food, drinking cups of tea and trying to manipulate hospital curtains to lets us talk. Well, this week she had a stem cell transplant, with her sister as a donor! I wish her a speedy recovery, and hope you all do too! She’s a top girl who really got me through my treatment!
Though it isn’t lucky in the slightest to need a stem cell transplant, Jade WAS lucky in the respect that her sister was a match.
Many people needing transplants haven’t got a family match. YOU could be that match. Sign up today at http://www.anthonynolan.org (16-30yr olds) or at http://www.deletebloodcancer.org.uk (18-55yr olds)
That’s all I’ve got to say really! in summary,
Lots of love, Keep smiling,😤 ☑☑☑
Hi all! Bet I can guess what you’re thinking…. PANTS on HEAD?!?!?!?!
Well watch the video below to find out what the hoosit I’m going on about! (but first read about me!)
So I’ve been busy busy as per usual, but not with RemissionPossible stuff so much….but with SCHOOL!
I’ve gone back into school properly this week, and have been absolutely LOVING it! It really has to be said I am such a nerd. A part of my school stuff is doing my WelshBacc individual investigation. Cry. Now, because I am interested in a career in medical research, my investigation needs to look at a topic surrounding this- anyone have any ideas??? If anyone reading this is a research scientist PLEASE help!
Also I auditioned for my school’s annual musical tday- Jesus Christ Superstar. I love doing shows, yet am not particularly drama-ry…. It’s just too much fun!
I have three things tied for top exciting thing of the week-
1. I’m visiting Bristol uni open day tomorrow, and some of their courses sound A-MAZ-ING.
2. Harney Sons & Teas have confirmed they will be sending tea for the gift boxes!
3. The recipient of the Gift box really appreciated it, and said it was the most thoughtful gift they had received. (look back to an earlier blog (7) for more details.
I’ve also been looking into some fundraising ides, including a dress up day for my 6th form!
NOW, onto the VLOG
HELP HOLLIE #putyourpantsonyourhead @helphollie
Help save the life of this 8 year old girl.
Sign up to be a stem cell donor at http://www.anthonynolan.org (16-30yrs)
OR at http://www.deletebloodcancer.org.uk (18-55yrs)
YOU COULD SAVE HER LIFE.
PLEASE consider signing up.
(sorry about the film quality)
As always- How’re you all doing?
SO the blog today is completely all about the title….Boxes and Blood. What that means? Read on to find out.
In total reverse order I am going to address BLOOD first, yum.
Blood is something which can evoke all sorts of phobias in people – whether that be having a fear of blood itself, and all it’s redness. Some people are scared of the needles associated with blood, and some people are totally grossed out by infections involved with blood. Pre-cancer I was kinda like this. I wasn’t scared of blood itself, more of what that blood meant and whether someone was seriously hurt. Similar fear with the having blood taken not of the needle itself so much but the thought of it ruining m veins or somehow bleeding out due to the needle.
All very illogical, I know. Despite this I had always promised that when I turned 17 I would be a blood donor. That of course is not longer a possibility. They don’t want my blood! *dramatic voice* I’m not good enough for them!!!
On a serious note though, I have had blood and platelet transfusions, had they not been available to me, I know my health would have been seriously compromised.
This is why I am urging people to GIVE BLOOD!
Like the Stem Cell register I keep rabbiting on about IT SAVES LIVES!!!! Even more it doesn’t
only save the lives of people having chemo, cancer patients like I was…. It saves the lives of pregnant women, newborn babies, those who have been in accidents, people having major operations, those with genetic blood conditions. All sorts of people from all walks of life who need it, NEED it.
I guess you all get what I’m saying GIVE BLOOD (or platelets) !!! AND if you can’t (like moi) get someone else to do it, get lots of people to do it, everyone to do it!
This topic is particularly hot for me at the moment because last Friday Give Blood Wales were in my area, and I appealed for people to go and give blood. As far as I know, One person gave her 27th pint of blood, another friend gave his 1st pint (at 17!) and one other tried, but wasn’t able to!
Those two pints of blood could potentially save 6 newborn babies lives between the two of them!
Up in the Teenage Cancer Trust ward in Cardiff, having a bag of blood transfused is about as significant as having two paracetamol not because blood isn’t important, but because that is HOW MUCH, and how OFTEN a teenager needs that transfusion!
In other words… give blood! Do IT Do IT.
You can find out whether you are eligible to give blood, and where you can do it at http://www.blood.co.uk (England& north Wales) OR http://www.welsh-blood.org.uk (wales) OR http://www.scotblood.org.uk (Scotland)
(fun fact…my blood type is B positive- so me right?! You know, be positive….never mind!)
OTHER TOPIC….. GIFT BOXES!
It’s pretty hard going at the moment trying to secure donations to go in the gift boxes, but it’s moving along- slowly but steadily!
SO far we have vouchers for wigs from www.wonderlandwigs.com , Hickman line holders from http://www.centrallineholder.com , boxes of tea from Harney & Sons Teas and countless earwarmers from kind ladies in my community!
If you own a business, work in a shop, own a franchise or even have some unwanted items, and think you can help with the gift box project….tell us!
Anything can help us! Whether it be a gift card, money off voucher or coupon, products or even just a packet of sweets!
Though we welcome any items, we are particularly looking for sweets, body care items ( eg moisturizer, wet wipes, lip balm, shower gel) beanies, tea/coffee/hot chocolate, vouchers for online shopping, biscuits, books, films, mugs, headphones, notepads, pens, puzzle books….all the kind of things that may be essential for stay in hospital and treaty items, to try and lift the spirits of a teen at a hard time.
If you have, have had or know someone with cancer, you input on leaflets to put in the boxes would be invaluable!
Contact us if you can help, or even to make a suggestion for the boxes! I am in the process of making a permanent page on the website about the boxes.
Anyone can help us, a mere share on social media, might alert us to the attention of the right people!
The only me news is that I’ve joined Team MOOSE with bigmoose, Jeff Smith’s new company… coming soon!
Have a nice week, share us and say ‘Hi!’
How’s you all doing? Busy busy like me I hope.
Bit of general update on all that were up to , and news about a fundraising event for Teenage cancer Trust- that is this weekend! Totally like me to have left telling everyone about this event, but heigh ho!
The event is the Trekfest in Brecon, happening this weekend, the 7th-8th of june.
Now most importantly…. What is Trekfest?
-It is a 54mile (!) walk that is done over 24 hours. And when I say 24 hours, I totally mean that! No breaks, the guys and gals doing this will be walking around the clock from Saturday through sunday, in the aim of walking the 54 miles, and all to raise some dosh for awesome charities.
I am not doing the walk myself, you should all be glad to hear, but we are linked with four guys who are! I am totally impressed by what they are doing, I know I personally really struggled when walked 18 miles over 2 days with a good nights sleep, so just imagine 54 miles, in 24 hours WITH NO SLEEP!
The guys doing it are William Fortt, Will Marfell, Iain Thomas, Keiran Kelly, Rob Hann & Paul Poole, who work at Laing O’Rouke.
With only a few days to go until the big challenge, if you are impressed by what these guys are goimg to do… sponsor them!
They are urging people to give up their morning coffee or cafe cake for one day and donate the money they would have spent….. so GO ON. Afterall, while you’re tucked up on the sofa watching Britain’s Got Talent this saturday, they’ll be out trekking through the welsh valleys!
SPONSOR VIA- http://www.justgiving.com/LORTrekfest
or You can give hassle free via text, by texting – LORW69 and £amount to 70070
These guys really deserve to hit they’re target before they head off on Saturday. I guess by reading this blog many of you wll know the good a donation to do, but to put it into perspective
£25 pays for a specialist nurse for one hour to help treat, and be there for a teenager with cancer.
Please give as much or as little as you can, just consider donating.
Check out www.trekfest.org.uk for more information.
In other Emily/RemissionPossible news!
Last Saturday, I sent out my first gift box! It was for the friend of my cousin who’s little girl was recently diagnosed for leukaemia. Though the idea behind the gift boxes is to be for Teenagers, we have now decided to make two categories of boxes, information and gift boxes, inspire by my cousin asking what would be a nice gift to send the little girl.
Though our gift box work will be primarily in TCT Cardiff, we will do teenage gift boxes and information boxes (for any age) on request. These can be sent to anywhere in the country and all we will ask in return is a small donation to fund postage, and to go towards the making of more gift boxes. We hope to get a lot of the items donated as with our current plans, the retail value of the boxes will be quite high, but there will still be some costs.
The contents of the teenage gift boxes is still under development, but the information boxes will contain relevant leaflets to age, diagnosis and treatment aswell as an earwarmer or hat!
We LOVE earwarmers and hats!
If you are interested in getting a box to someone you know, contact us!
Represented TCT at the Mayor of Newport’s charity panel, which was very exciting.
Lastly and MOST DEFINITELY not least, I had clinic today and I am still in Remission!
SO on that happy note, I say have a nice week, donate to these awesome blokes sacrificing their sunday lie in (and night’s sleep) and share us about.
PS. We love getting feedback
PSS. Following a recent incident, if you are a member of the press or media, please do not take images or content and pass them off as your own. Thanks 🙂