Today, Wednesday February the 4th is World Cancer Day. It’s a day you may know nothing about, or only know of from sharing a picture of a candle on Facebook. You may have guessed something was up from the constant news that now, instead of the 1 in 3 statistics we are accustomed to, we now have a 50% risk each of developing cancer.
For me though, it’s a little more than a ‘share this if…’ picture day, and more than just a # on twitter.
It is a day to remember and hope, a day to learn.
The announcements of increased risk for all those born after 1960 needs to mean something. We need to take this day, this world caner as a day for change and action. Allow this day to mean more than just one where you like a Facebook post.
We need to stand together, reduce personal life risk, educate ourselves on symptoms and take responsibility of our own health- so we can prevent cancer where possible, spot cancer early when it does develop and see screening save lives.
Currently 4 in 10 cancers are potentially preventable. Think of the impact a change in lifestyle could have rationally. Currently half of all cancers are diagnosed after they have spread. Think of the impact education could give to thousands of people, in cases where secondary cancers mean an ‘incurable’ diagnosis. Currently too many people are skipping routine cancer screening. Think of the impact if everyone who got a cancer screening letter in the post actually went to their appointments, as above cancers would be detected earlier and could improve prognosis.
I know these things won’t save everyone, and some people will be diagnosed after their cancer has metalized, but surely making an effort with the above can only improve things.
The knowledge applies to all ages. Recently someone two years above me in school was diagnosed with Hodgkin’s lymphoma. This means that between the pupils of three consecutive school years at my high school, 4 have had cancer by the time the oldest is 20. And that’s from my working knowledge. The risk of having cancer by 24 is around 1 in 282, which is relatively low risk, but in the statistics game this meant I was the second person in my school year diagnosed by the age of 16.
We all need to be aware. We need to unite in this fight and never let cancer have any sort of chance.
We need to support the researchers, the movers and shakers, the little fish with big ideas and those tireless campaigners funding the research. They are finding better treatments, kinder treatments and hoping for a day where all cancers can be cured, and during that treatment time you have a great quality of life.
So go, educate yourselves! Knowing will not make you any more likely to have cancer.
And in adults…
Change things up!
Today is for all those I’ve met along this journey- Chloe, Jade, Beatrice, Both Tom’s, Jacob, Yusuf, Cory, Dan, Cameron, Tina, Sonali, Ffion, Hwyel, Jordan, Libby, Beau, Elenid, Harriet, Andrew, Catrin, Louis, Alex, Dave, Amy, Rosa, and so many other people….
And especially for those we’ve lost, Pauline, Becky, Joe and a big inspiration, little Margot. There are others, inspirations and many I wish I could have met.
Hope you take something from this blog today. Its a bit emotional for me, managing my first blog since transplant and carrying what I see to be an incredibly important message.
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.