Category Archives: Guest Blogs

Building a legacy…

It has been the week  of every parents night mare. Yet its not a time we had dreaded because it had never been on our horizon.

Emily didn’t fight cancer. She had cancer twice, reached remission twice. It wasn’t a battle just simply a challenge that she had taken on and won.

Transplant however was a different story.

We believed Transplant was the only option. We still very much believe it was the correct decision.  We will be eternally grateful to the mystery Spanish gent that gave her a chance of life. The  opportunity to have 14 more months with her. His donation gave us an amazing family Christmas all together without a hospital in sight.  Her 18th birthday. Her sixthform leavers ball. A 1 year post transplant tapas night. A family & friends wedding.  Starting university.  Planning a future.

Transplant was tough. The first 100 days quickly passed with an equal mix of time home & in hospital.  But as time went on less and less time was spent at home. 309 days in hospital during 2015 was a strain on everyone but there were very much victories. The medical team would visit early so she could have a few hours to attend lectures to keep up to date on studies.  They very much adopted her wish to get to Reading University and study microbiology.  A dream that occupied her last discussion with her consultant.

The last few days were very sad but we still had no idea what laid ahead.

We remain shocked and confused about why she is no longer here. But we are accepting that the difficulties were simply too great. If there had been more options/ drugs/ treatment then her incredible medical team would have found them. In the end she took control and did it her way. With dignity and respect for herself and those around her she passed away on March 12th. Our hearts are bursting with pride and grief.
The future is filled with her ambitions.  She left plans many plans for us to keep busy. We  intended to continue her legacy.

Her legacy will be to support the building of a Bone Marrow Transport Ward. One in which she had hoped to work one day.  One where patients can have dignity and access to toilets while in isolation.

https://www.justgiving.com/remissionpossible

As a family of five with an amazing  community behind us we will strive to keep her ambitions alive.

We have booked Ball at  Celtic Manor on 22nd October. A Santa Run on 10th December plus many more events are being planned. All support welcome. Every £1 in the pot will make a difference.

But simply the most important thing to remember is she was in remission.  She did not have cancer. Remission was Possible.

“I don’t want you leaving this saying how  inspirational I am unless you are inspired and motivated to do something”.  Emily Remission Possible.

So please get in touch.  Join in. Lets get building a legacy.

Donna, Andrew very proud parents xx

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Guest Blog: Why I Joined Marrow.

This guest blog is from Ellie Philpotts, a Cardiff Uni Student and staunch Marrow supporter 

When you join university, you’re thrown into a new world. Societies are all scrambling to recruit you, usually with the lure of free food; Dominos are handing out pizza in the hopes of getting their local branch on your radar (which probably doesn’t need much persuasion); clubs compete for your attention via the cheapest Jager-Bomb, and lecturers are trying to regain their last threads of sanity reminding students to actually attend classes during those crucial first weeks. But amid this relentless craziness, one society caught my eye – and, sorry to be clichéd, but, also my heart.
Considering this is my guest blog for the amazing Remission Possible, a charity/site set up by blood cancer fighter Emily Clark, you may not be surprised by my revelation that this society was… Marrow!
Most big universities now operate a branch of Marrow, the brainchild of Anthony Nolan, Britain’s main blood cancer charity. Their primary mission is getting the public on the bone marrow register, and Marrow is the side of it that’s both run by, and generally aimed at, students. This means we host recruitment drives at uni, signing eager students (consenting, of course!) onto the bone marrow register, which means taking a simple saliva sample from them. We also arrange events such as our successful Variety Night last month, featuring an array of comedy, dance and live bands, and carolling in Cardiff city centre around Christmas, raising awareness and donations. The Marrow team was the first society I joined when I began at Cardiff University in September 2014, and although I’m also part of many more societies now, they’re definitely my favourites in that they’re the ones I’m most passionate about. So much so, this week I’ve been confirmed to have the role of their Media Coordinator, starting in September. This means I’ll be in charge of our social media, namely Twitter and Facebook updates; Public Relations and Marketing – responsibilities including getting the word out there of Cardiff Marrow, wider Anthony Nolan and actual bone marrow donation; informing of our specific events; and liaising with the public and local/national media to make our amazing cause even more well-known around the ‘Diff and beyond.
So I’ve said about how I completely don’t regret dedicating my rare free time at uni volunteering for Cardiff Marrow. But what actually attracted me into joining? No, their stall at Freshers’ Week was a rare one which didn’t boast free food – simply because they don’t need to rely on things like that. The knowledge that you’re truly helping to save lives kind of beats even the nicest slice of pizza!

marrow

In January 2011, when I was 15, I was diagnosed with blood cancer myself – Hodgkins Lymphoma to be precise. I finished chemo and steroids in May 2011, receiving most of this at Birmingham Children’s Hospital. Through Teenage Cancer Trust, I’ve met so many incredible people, many of whom have had transplants themselves. People with mine and Emily’s form of cancer, lymphoma, often need bone marrow or stem cell transplants, like Emily herself began this year, and I realised that could’ve easily been the case with my specific illness.
In 2012, a girl in my cancer group, Becky Bishop, who also had Hodgkins, died aged only 16. She’d began the transplant process herself, and greatly inspired me during my recovery. I’d say the combination of my own case; Becky’s situation and seeing so many others struggling to find donors really launched my passion of Anthony Nolan’s work.
I’m really looking forward to starting my Cardiff Marrow committee role and would love to work more with Remission Possible through this. Emily’s venture is an incredible idea and she’s doing amazingly, running this while undergoing the effects of her transplant. Emily, you’re a massive inspiration to me and many others. Keep on Remission Possible-ing and I’ll keep Marrowing 🙂

What NOT to say to a cancer patient!

So here is another guest blog, this time from a friend, Amy. We met at the Clic Sargent Music residential, and she writes a funny blog at http://littlemisssurvivor93.blogspot.co.uk/ I hope you enjoy this, she is an awesome girl and a great friend! (more from me at the bottom!)

 
What not to say to a cancer patient.

 When you don’t know what to say to a cancer patient and you find you end up saying something that was clearly not well received, you’ll find that generally they will forgive you (eventually).

However, in an attempt to save you from this horrible moment here is a list of some of the things you should just never utter to a cancer patient (trust me): and for the rest of you, something to laugh about, as it’s happened to all of us!
 
1) “You’re looking great!”
 
No I don’t! I still own my mirrors (as much as I kinda want to avoid them) don’t you think I know
that the treatment has made me look like I have the body of the Michelin Man with the head of a shuttlecock sewn on?
But if you mean to say “ooh for a girl with cancer you look amazing” then thanks, yeah I do, my
chemo brings all the boys to the yard! I wish…
 
 2) “Half the battle is the mindset. Be determined to beat cancer and you will.” 
This is simply not true in any way, or most cancer patients that died would still be here. Yes it’s good to think happy thoughts, but It will not save your life, only your sanity.
 
 3) “At least it’s not on your face or somewhere they could see the scar”
 
Yeah, because it’s so much better that it’s traveling about around my vital organs! I should
maybe do the Braveheart style line now: they can steal my organs, but they’ll never steal my
freckles! Somehow I don’t see how my cancer playing hide and seek has a positive aspect.
 
 
4) “oh you have cancer? My Gran died of cancer, in the liver, it was painful. Then my family friend died of bowel cancer, it was really slow. Ohhh do you know who else had cancer…”
 
That’s right, please comfort me with a list of all the people you know who died of cancer. Next
why don’t you tell me every horrible detail, oh wait you already did!
 
5) “I know how you feel… I’ve got a terrible cold right now”
 
You’re right, 200 years ago if you lived in squalor conditions you might have died! But it’s not soman up, and get a grip! Cancer and a cold are not the same, in any way!
 
6) “Lance Armstrong”
 
Stop comparing every cancer patient to him or be prepared for that patient to muster up some
strength to punch you!
 
 7) “Why are you gaining weight if you are so unwell?”
 
That’s great, as if I didn’t already feel like I looked terrible enough! For your information, cancer patients usually get pumped full of steroids. It was either that or I puke in a constant stream, you decide? PS. I can’t believe you basically just called a cancer patient fat!
 
 8) “How are you feeling”
 
I know you think you’re being nice but all a cancer patient thinks as soon as you say that is:
How the hell do you think I feel, I have cancer, how would you feel?
And, it doesn’t help that they are asked this question thousands of times a day.
 
 
9) “Chemo doesn’t work. Try bathing in goats cheese, wearing a hat made of mud and smoking banana leaves. The government is covering up the natural cure”
 
Just get out my room you crazy, conspiracy theory, hippy! p.s. Shave your armpits mrs/mr natural
 
 
 10) “I just keep thinking how lucky I really am”
 
 Well I’m glad I could be of service! Don’t rub it in! I’m glad you feel blessed but share that somewhere else.
 
 
  11) “I don’t know how I’ll cope without you!”
 
 Well don’t start making my headstone just yet…and please try and grow some optimism
 
 
  12) “It’s okay you can live on fine without [insert body part/organ]”
 
Yes I’ll live but don’t just push it aside like that part or me wasn’t important. I kind of grew
attached to my body parts over my lifetime you know!
 
 I hope this was a little helpful for everyone, just remember if you don’t know if what you are about to say is going to be well received by the patient, just don’t say it!
 
-Amy!
 
Did you like it? I did!
So a quick bit of Em news- the reason we’ve had another guest blog this week, because I’ve been working on a guest blog for  Chris’ Cancer Community, about the back to school time of year! It’ll be posted on Sunday 🙂
I’ve also been invited to the bigmoose ‘Elevation’ Gala Dinner as a guest- find out more here☑ http://www.bigmoose.co/events . I’m very excited about it!
 
Hope everyone’s well guys!
– Keep Smiling!
Em xx
 
 
 

A Mum’s Message

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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