It’s been a while again, but I want to thank everyone for their well wishes regarding the treatment in Bristol. The first one went well, and I’m due to go for the next on Thursday and Friday this week. The process of the treatment was simpler than I had thought it would be, and was very relaxed- each day I arrive, get hooked up to the machine, and just sit in the chair (a nice one like the dentist’s) and wait for the machine to do its thing.
All whilst looking incredibly chic in my sunglasses and bobble hat! We went for coffee after the treatment on one of the days, and the photo below was the result of my ‘cool’ outfit and a very large plant. Whoever knew Bristol Royal Infirmary was so exotic?
Another update: I’m no longer an inpatient!!!!! I am finally home, though having to return to TCT daily for my infusions, I still need treatment for the CMV. Thankfully my bloodwork is showing the drugs ae taking an effect, so it’s all good.
The final thing I touched upon during my last ‘update’ blog was my hair. It continued to fall out over the past few weeks, so I have now shaved it off. And I’m not too upset. The transition from patchy-fally-outy to skinheadish is definitely a positive one. I may still be devastated that it has fallen out, but I’m glad I won’t have hair all over the place any more. Please remember: my being bald doesn’t mean I am suddenly more ill, or have cancer again. It’s just become a part of my post-transplant journey, something all transplantees will agree is weird, unpredictable and just plain doesn’t make sense most of the time. I’m still ill, but not. It’s a bit of a confusing place to be, this recovery phase and even more confusing to try and explain. Also, being bald DOES NOT mean I look like Sinead O’Connor. Or any other bald woman. Because I really don’t, you know except for the fact we have no hair.
I’m glad this next week is going to be a busy one, with Bristol, TCT Cardiff every day, being in uni and assignment hand ins because it’s also the anniversary of the week I found out I’d relapsed. Which means a year has gone by already. Can you believe a whole year has gone by? I’m struggling to, because though I feel like forever has passed by since everything went up sh*t creek, a year seems like such a long portion of time to know I’ve been in this way for. I may talk more about it later in the week. I don’t know. Urgh. And that means 2 years since diagnosis is impending, but also the mark of me being a year in remission (YAY)
There will be a full-on post coming about it soon, but get your Santa costumes, tinsel and baubles and be ready to run to beat blood cancer!
It’s going to be on the Saturday 12th December at 10am from the Olive Tree near the Oasis in Croesyceiliog, in association with Griffithstown Harriers and in aid of Bloodwise. It’s going to be fun for all, and at only 2 miles the whole family will be able to get involved! It’s only £5 to register and I can’t think of an easier way to get on Santa’s good list…
Keep your eyes peeled for more information over the next few days, but if you’re already sold, you can sign up at https://bloodwise.org.uk/event-challenges/run/family-santa-runl
PS. A HUGE thank you to the Knitting Cwtch at Llantarnam Grange for their amazing donation of hand knitted hats. The skill and craftsmanship that has gone into them is beyond belief, as is the number! There are hats going to the Noah’s Ark Children’s Hospital, Teenage Cancer Trust Cardiff and the Oncology Centre in Bristol. I will post some pictures of them being modelled when I can!
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.