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Becoming a Hybrid Human…

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….

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I have reached a new level in boredom…

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…..

Keep smiling!

Emily

Why I love…the Teenage Cancer Trust

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.

For many Halloween is terrifying, and seeing as I’m sat here blogging you can tell I’m not the biggest fan of such frights. images (1)

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.k

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.

 

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I inhabited the best at the front of the picture for the best part of 2 months, which when I was put in another bed resulted in my mum walking in on the poor girl in it several times!

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!)🎃

-Em xx

 

Why I love…the NHS

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.
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Bountiful to Bald…and Beyond.

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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Blog 2- More on my journey.

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 😄

Em xx