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 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.
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
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,😤 ☑☑☑
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!’
Today, May 28th is World Blood Cancer day.
Every year, 30,000 people in the UK are diagnosed with a blood cancer. These are Leukaemia, Lymphoma and Myeloma as well as a few other cancer like blood disorders. That is equivalent to one person every 20 minutes.
Blood cancers are the most common type of cancers diagnosed is children and young people.
I had a blood cancer, Non Hodgkin Lymphoma.
At this point you may be asking
“Well what does this mean to me?”
Quite frankly, this means everything. EVERYTHING. Why? Because YOU are the cure for blood cancer. By donating stem cells you can save someone life, you could cure someone cancer.
How? You could join the Stem Cell register. You could become a lifesaver, you could give someone with no other options, the very greatest gift- life!
Anyone with half an eye on social media will have seen the #shake4mike #teamMargot/#swabforMargot campaigns. They both needed a donor from national registers, but originally when searched there was no match. Thankfully they both have matches now- but many people don’t- more people need to join.
If you joined the register, and were found to be a match 9/10 donors donate in a process similar to giving blood. The other 10% donate by having bone marrow drawn.
The bottom line is, though the prospect of donating bone marrow is a daunting prospect before signing up, IT SAVES LIVES and if you were (unfortunately) diagnosed with blood cancer you would not have a choice on whether to undergo such procedures.
So why not choose to do all this ^ and be a LIFESAVER. YOU can help make RemissionPossible.
So do I need to say it again? YOU CAN SAVE A LIFE. (and here, most people are eligible)
So celebrate World Blood Cancer Day with me, and sign up to be a stem cell donor.
If you have ever known someone who has had blood cancer, and don’t know how you can help, THIS is the perfect way!
Get it yet?
SIGN UP, TELL US, TWEET US…
You could change a life. Simple as.
So go on then….do it! It will be worth it, it is something you can be proud of, something you can put on your CV. We will appreciate it, and so will every other person who has ever had a stem cell transplant, or had blood cancer.
Sign up at http://www.deletebloodcancer.org.uk and join a worldwide community of 4 million incredible people!!!!
Keep smiling! (I will be if you sign up!)