Let’s get ready to rumble!
I am booked in as a patient, the consent forms have been signed, and the chemotherapy is up- I have officially begun Bone Marrow transplant prep!
It’s a little scary I have to admit. Though it’s obviously more daunting for me, I imagine many of you will be quite innocent to the transplant process, so I’ll try and break it down best as possible, so you get some of the things I will be talking about in the coming weeks and months!
The most important news first- I have a match!!!!
Of course I wouldn’t be stating the transplant process if they hadn’t found m a match, but the decision has been up in the air between different donors, and I didn’t find out the outcome of the decision until yesterday morning.
I am so incredibly grateful to this anonymous Spanish person, that I may never know who is doing such a big thing for me. Words can’t explain how much I feel I need to be able to thank them, because I will literally have their blood in my veins!
To start, did you know these things about transplant?
- A bone marrow transplant, unlike the transplantation of organs, doesn’t require an operation. The actual transplant itself is seen as the easiest part in fact! Receiving the cells, is an infusion much like having platelets.
- If the donor of the cells has a different blood group, the recipient’s blood group will change! My own donor is the same group as me, B positive- so my blood will stay the same group (just different genes!)
- As mentioned, my blood will be completely ‘new’ after the transplant! It will have the genetics of my donor, so a genetic comparison of a cheek swab and a blood test after transplant would come up as different people. As my consultant says, I will be a hybrid human from now on!
A bit more insight on me….
Today (Saturday 17th) is day -10 on my transplant protocol, meaning I have ten days until I have the transplant. This is made up of 2 days of chemotherapy, then 4 days of radiotherapy, then 2 days of monoclonal antibody therapy, then a rest day, then a day to start the anti-rejection/immune suppression drugs..’.Then FINALLY the transplant itself!!!
It’s going to be a bit of a long slog- once I’ve had the transplant I’ll remain in isolation for between 3-6 weeks afterwards, and I will have to semi-isolate myself from people for at least the first 100 day after the transplant. Hopefully, when I reach 6 months beyond, if I don’t show any signs of GvHD (graft versus host disease) I can have my immunisations as soon as possible, and go back to normal. Even if I’m not quite right, and am having GvHD- which is the graft battling against my own cells and causing issues, I’ll be well within the next few months.
This treatment will keep this pesky, evil cancer away for good- the rest of my life is so worth doing this for! Though I know it will be hard work, I am looking forward to getting it done, being done with side effects. The monoclonal antibody therapy is known to cause fevers and rigours, and is nicknamed ‘Shake and Bake’ so I’m looking forward to getting that behind me.
I am super thankful for all the support so far and am pretty bored (and I’m on day -10) so please send me blog post suggestions, links your own blogs, funny clips on YouTube and cake recipes (?!)
Once I reach Day 0 of transplant (the day I have the transplant) I will be doing the #100daysofhappiness challenge, to document my journey up to day +100
From the 27th I will be Welsh outside, Spanish inside…and I can’t wait! Perhaps I will discover a passion for flamenco, or suddenly be able to catch a tan, instead of remaining my ghostly speckled self…..
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,
With tonight being Halloween a blog about the Teenage Cancer Trust may not seem to be as topical as you may want to be reading. Halloween is the night of tricks and treats, frights, spooks, gory make up and if you’re unlucky enough a dosing of flour and eggs.
I didn’t want to talk topically about fear, frights shock or horror because we all know tha cancer is full of that without me boring you with a blog about it. I guess most of you know or can imagine the gut wrenching awfulness that comes with a cancer diagnosis as a teen, so why draw it out. Instead this blog is about some people I love, the people who make it all ‘ok’ (as ok as it can get) These are the people who as a Halloween-o-phobe you open the door to expecting a ghoul and find a fairy princess there.
So who are these people? Well if you’ve read the top, they are the Teenage Cancer Trust, a charity that before a personal connection most people probably hadn’t heard of before this year, and a charity that deserves much more attention than they get. A charity who I just described as the Fairy Princess of a teenage cancer diagnosis.
If you have no previous connection to Teenage Cancer Trust and don’t really know who they are, or what they do, you will be blown away. By building wards for cancer patients they give the opportunity for teenage patients to be in their natural place- with other teens and young people, even when they’re having treatment. It allows them to have space, watch TV and have some of the choices you would have in your own home. It allows young people, like me to be in their own, with their own and not with the babies or the grannies.
And why do I love them? Concisely put, they made the difference between hope and defeat in the face of my own diagnosis nearly a year ago. They made the difference between being with other teens, and being with 80 year old women telling me about how you I am. They made the difference between normal conversation and well meant pity and grandchild chatting. I firmly feel that an ordinary ward has a much more pessimistic feel than any TCT ward, with big colourful sofas and random light up jukeboxes.
I love what they do so much, I love what they stand for and I love Roger Daultrey. I love the ethos that a hospital ward shouldn’t have to look like a hospital ward. I love that you can have friends to visit. I love that when they do visit you don’t have to be huddled around a hospital bed, that you can play (I tried!) pool, watch films or just chat.
The difference it makes, to be around others your own age, for them to also be bald, lugging around drip stands and have a complete understanding everything that is happening is completely priceless. I do think it is the friends from the TCT ward that I made that got me through treatment.
My diagnosis was an extremely confusing time. Having my consultant be able to say ‘let me take you to the ward, it’s where you’ll be looked after’ and even with a quick off-the-cuff visit to be able to speak to some nurses, the ward manager, and day doctor is incredibly reassuring. My mum often says that she saw a light when we got to that ward, that she thought everything would be alright after arriving there. She takes pleasure in describing the Cardiff ward, the Skypad as looking like a penthouse youth club. To be fair to my mum, that’s exactly what it looks like.
If you haven’t quite got it already, the Teenage Cancer Trust are more than just people who build wards, and they are much more than a name of a collecting tin, the name of something ‘which would never happen to me’. Teenage Cancer Trust means you are supported, so that when you’re ill on Christmas morning, there’s a nurse dance around your bed. The teenage cancer trust means that when all you want is duck pancakes, your mum can cook some in a microwave for you. The Teenage Cancer Trust means that when your brother visits you, he can watch TV with you, and it isn’t a case of ‘let’s stare at Emily for the next hour’. It meant that I have made amazing friends. I meant while I was sleeping, my mum had other mums to sit and eat breakfast with. It meant everything really. Everything and so much more because I am here to tell the world of my love for this charity. Hey deserve every penny they get because that penny will go towards providing lifesaving treatment to someone like me.
Everything they do may seem simple, grouping teens together for chemo, but it is so so much more than a room to have treatment in. A place for treatment, but also a place to try and live, when your life isn’t yours to be lived, but tucked away in a box.
I love Teenage Cancer Trust, because they are there for you wholeheartedly in a time of need that you never thought imaginable.
If you want to see some more pictures of the teenage cancer trust ward yourself, (the above are from Cardiff) or find out more about the awesome stuff they do, check out www.teenagecancertrust.org
Hope you liked this blog, enjoy the rest of this spooktacular night!
Keep smiling (and trick or treating!)🎃
I love the NHS.
I love the NHS, that’s right, I love it. I am so relieved to get that off’ve my chest, you all now know my-not-so-secret love, deeper than the oceans and wider than space.
NHS. Three letters, or three words. National Health Service. Such romantic words, so originally named.
Of course I’m not having a romantic relationship with a public tax funded, government designed, political minefield of a health system, but I often feel like I might as well be. I’ll say it one more time- I love the NHS.
But, WHY do I love the NHS so much?
Well the answer is obvious- it saved my life and it will have almost undoubtedly helped you at some point or another (we were all born once remember!) The NHS is a lifesaver, and I owe everything to it.
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
There I am, with my second post already!
Now, from looking at the data coming to me I can see that the page on this site getting the most traffic is the Em’s Story page, and because of this the topic of today’s blog is very much getting you all to know me a bit more.
I have two videos below, the first being a vlog I made on my very first night in hospital at the teenage cancer trust and the other being from Tuesday 22nd April 2014 (yesterday). I’ve never shared the first anywhere publicly before, and me, my mum and my sister watched it for the very first time on Sunday-though I filmed it in December, I never watched it. PLEASE WATCH BOTH VIDEOS!
So watch it ⤵ (I apologise for background music)
So that was then, and this video below is me now!⤵
I just want to say a massive thank you to the angels at Look Good Feel Better , I had an amazing time at my workshop. (I will be writing a blog post specifically about it!)
Check out the amazing work they do for women with cancer here – http://www.lookgoodfeelbetter.co.uk/
Hope you all have a great week, keep smiling 😄