This week we have a guest blog from my mum, Donna, and her take on what having a child with cancer means, for the whole family.
When Emily was diagnosed with cancer our world changed in an instant forever. I now view the world different. I feel empowered to make a difference and give something back to the many charities that have supported us. I have done voluntary work for over 20 years. This has given me new momentum.
As parents, many of us joke about wishing our children came with an instruction manual. Especially when they are babies. It’s a good job they don’t. I may have sent them back with fear about what laid ahead.
My mother would say its because my house is unlucky and I should move before someone else is stuck down by some disease or condition. Ironically, since moving here my children have been diagnosed with Type 1 diabetes, epilepsy, asthma, dyslexia, dyspraxia, and Cancer. But we have also been blessed to be able to add to our family. We don’t feel unlucky but the complete opposite. We are so lucky to have these children. They enrich our live beyond words.
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This week its rather a bit more of a ‘me’ blog, though it does seem such a while since I wrote that blog about results day, and I have been up to a lot since then! By the way I also hope that everyone picking up their results were happy with them!
So what have I been up to since then?
Well I spent the beginning of this week from Monday to Thursday, at a music residential run by Clic Sargent. It was held in Stonar School, a boarding school near Bath (posh right?)
Now, for lack of more words and sophisticated description …..It was AMAZING!!!
I honestly cannot describe what an awesome time I had… but for the sake of this weeks blog I will attempt to do so!
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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.
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!)
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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!)
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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 🙂
How’s everyone’s week been…..busy busy busy for me!
For a start, as I told you in the last blog, I sat two AS level exams last week, on wednesday and thursday. Everyone I’ve told about doing exams thinks I’m crazy…..maybe I am, but heigh ho, craziness is the best!
Next order of business, my newfound welsh media stardom! Yesterday, as I assume many of you reading this will have seen there was an article on me in WalesOnline, and in the Western mail (http://www.walesonline.co.uk/news/wales-news/teenager-cwmbran-alerted-cancer-jeans-7153173#.U4OFyHOprPg.facebook). It kinda was an article about me, my cancer journey, and what I want to do with you all as a part of RemissionPossible. I was totally AMAZED by the articles response! One of the admins informed me that my article was the most read all day- aprox a whopping 24.5 THOUSAND VIEWS. According to an email we received, I was TRENDING!!!!
The article also had 1615 social media shares! Who knows how many people my story reached….
Still a bit boggled to be honest!
So if you’re reading this, and it’s your first time reading my blog, don’t be baffled by my craazy writing style-share it with your friends, and follow us. Actually, even if you’ve followed me since day 1, share this!!!
Now onto the main topic of today…..Hannah’s holiday home appeal. While my virtual self was busy taking the welsh media by a storm (!) I was fortunate enough to enjoy a holiday near the Coast, courtesy of Hannah’s Holiday Home appeal.
Hannah’s Holiday home appeal is a charity that fundraises to provide holiday for families whose children have been affected by cancer. They own two incredible caravans in Oakdeen holiday park and Hayling Island. Though I can only speak for the caravan I stayed in, they are possibly one of the most luxurious places I have ever stayed…..yes, I am talking about a caravan!
Hannah, the namesake of the appeal sadly passed away at the age of 10 in 2004 after having Hodgkins Lymphoma. It’s an absolute credit to her for dreaming up the holiday home idea, and to her family for the work they have done. So many of you probably don’t see the significance of a short weekend away in a caravan, but it was SO amazing. We all had proper family time together again. It really is seemingly impossible to thank Pam (Hannahs mum) as much as we want!
In all seriousness it was a pretty emotional weekend, in the main because there was a picture of Hannah on the fireplace and several scrapbooks detailing her journey, aswell as a visitors log. The visitors book was the only condition of staying in the caravan- leave a message in the visitors book before you leave. The book was full of peoples accounts of their holidays in Oakdeen, from all the way back when the caravan was first opened!
As I said before, it really is so hard to put into words what that holiday home being made available meant to us.
The best I can do, is just ask you to think how much your holidays mean to you, how much fun they are, how much of a break they are and how they are always looked forward to. So so so many families with children who have cancer, see holidays as a nice thought, but an unrealistic hope, especially while that child is on treatment. After all holidaying usually requires the ability to travel, time to plan and most fundamentally the funds to pay. Hannah’s Holiday Home Appeal provides the opportunity to holiday, without all of these stresses.
Check out their website http://www.hannahsappeal.org/
So the other thing I have that’s worth talking about is the progress I have made…… we now have 4 people who have joined the Stem Cell register, to become potential lifesavers!! Why don’t you join them by signing up with http://www.anthonynolan.org or http://www.deletebloodcancer.org.uk ? If you have signed up….or are considering tell us! We want to congratulate and persuade! The importance of having stem cell donors has never been so prominent, what with the #shake4mike campaign
New blog will be up soon, got a busy week ahead of Remission Possible stuff now exams are over!
Keep Smiling guys! (and share this blog EVERYWHERE)
I didn’t get that blog to you last weekend as promised due to serious exam cramming! Yes after totally ingnoring doctors advice, I am sitting 2 AS levels this week. This one isnt on the planned topic either, but IS something for everyone to think about.
Very sadly, as I guess all of you reading this will know, Stephen Sutton- the ‘setter upper’ of ‘Stephen’s Story’ passed away, after a battle with colorectal cancer. Its incredbly sad, especially for anyone who knew him, or who are going through a similar situation themself. After all I can’t imagine how much more scared, and emotional I would have been had I still been on treatment, or still had cancer. It’s one think to know the facts regarding teenage cancer mortality and prognosis, but another to see someone who was so socially active, and present in society die. Afterall, though I cannot know how ill and suffering he was, he still managed a massive achievement- raising over £3,000,000 for Teenage Cancer trust and shedding light on an invaluble but relatively unknown charity. Incredible.
It’s this thought that has led me onto the topic for the bulk of the blog today- to perception of people with cancer’s appearance. It was well documented in the media that after Stephen made a short recovery in April, some trolls tried to demand money back, tried to claim he was a fraud, because he hadn’t died, and because in short he didn’t look like a cancer patient. It just makes me think about how, as someone who has recently had cancer am perceived, as well as how you don’t have to look pale or sickly to have cancer, diagnosed or not.
Here I have cancer. I have hair, I was in London, so was obviously well enough to travel on a coach. By the wednesday of that week I had had a CT scan, by the Friday after that I was a diagnosed cancer patient.
In THIS photo I don’t have cancer. Bit of a difference right, taken the day I had my PET scan.
It’s looking like this I get treated differently- DO people expect you to be bald, sickly, pale……?? YES!
Now, I would expect everyone to say that the second picture of me was one after having chemo. But would anyone have hedged a bet at saying that same picture, the one with a headscarf, tired and pale was the cancer free one?
I don’t really know where I am trying to go with this, really. All I am thinking is partially that the only people who have been in the media, representing young people’s cancer are Stephen Sutton, and Kris Hallenga, who is also unfortuantely terminal.
I just think that:
1. It’s terrifying for teens on treatment to see the only prominent cancer sufferers to have died or be terminal.
2. What message is it spreadng to the more ignorant of us- is the media reenforcing that lie that so many believe which is if you get cancer you will die?
Role models, media and death aside, the point of the pictures is to say that if you look like me, abit battered and nowhere near as gorgeous (haha) as befor, it means the chemo is working, yeah!?
Ok slighly crazy rambling over, if you can get some sense from all of that I’ll be more than a tinge amazed, gotta be said!
OTHER NEWS FOR THIS WEEK
I HAVE BEEN IN REMISSION FOR ONE MONTH TODAY!!!!!!!!!!!
I did an interview with wales online! Will let you all know when it’s out.
My Mum signed up to the stem cell register with www.deletebloodcancer.org.uk !!!!!! AMAZING right?!?! I am so proud of her, and I hope she is the first of many to join the register linked with remissionpossible. It’s undeniable how being on that register SAVES LIVES. To see the impact it could make, check out the #shake4mike. (if remissionpossible pesuades you to join up, or if you need some more reasons why you should, contact us!!)
Just need to get these exams done now so I can crack on with RemissionPossible!
If anyone knows anyone who could help with printing leaflets, t shirts or raising awareness point them in this direction.
Anyways have a lovely weekend- keep smiling !