Today I am officially 6 months and one week post transplant. Counting the weeks I know 27 have passed. A quick search on my phone tells me that it was 187 days I received new life, but that could be lies seeing as I stopped counting days at 100.
I meant to write a post on the actual six month, but hospital admissions got in the way of that, and what is a blog unless you feel like it. I guess that’s the element of “no matter how it may seem” about all this.
Because in the past week, I have taken the single biggest step since having the transplant in way of.recovery.
It’s probably the most exciting step as well….
I HAD MY HICKMAN LINE TAKEN OUT!!!!
Anyone who has ever has to live with any sort of permanent central line will know what a huge deal this is and how much it means.
Admittedly, I had it removed due to infection (not my fault may I add) but the fact it hasn’t been replaced shows how I am no longer dependant on electrolyte and blood product infusions. Less than two months ago I was having blood every fortnight, platelets almost 3 times a week and magnesium at least twice. I’ve come a long way.
I may still have CMV, but I’m having a new form of treatment for that, so that’s all good. I still have this mysterious para – influenza, the flu that doesn’t make you feel ill, and we can’t get rid of….but that’s all good. I probably still have mild GvHD. Clinically I look a bit shifty still, but even my consultant has to admit in that person I don’t really match up to my notes, I’m too well!
I’m a great believer that if.youre well enough to be bored, you can’t be that ill, and this past hospital admission has really shown that. Thankfully I was discharged today!
I am so happy with where everything’s going. I’ve had a Chinese takeaway, something we couldn’t have dared do without a decent neutrophil count, however the removal of my stiches today has lead to the most exciting development…
I have had a PROPER bath for first time in 9 months!
Yes, this is a weird thing to share, and yes I have been washing since November, let’s make that clear.
You see, living with a hickman line isn’t all about just having a tube you can see. It’s a tube that genuinely goes inside of you, meaning anything that tube is exposed to can too. Meaning washing becomes a fiasco of tape and towels, and not getting the dressing wet and being careful and most definitely not having a deep relaxing bath.
Having one today was freedom. Bubbly, hydromoly, blissful freedom.
I am very glad the bathroom is a private place because if anyone had seen the way I was smiling just laying in the bath, I fear I may be off a rather different type of hospital for sure!
Just imagine though (if you’re a bath kinda person) how great a deep, hot, bubbly bath on a bog standard day…
Now imagine it after being discharged
from hospital, after having to have a cannula placed, needing a relax AND having been deprived of a proper bath for almost 9 months. You can see why I’m a happy chickie right now.
Don’t take the little things for granted, because they are great. I’m not saying that to make you be ‘inspired’, make you reassess your life or suddenly start crazy philanthropy. People with cancer are ordinary cool people with the short end of the stick. I’m saying it because life is awesome. Especially the bits with baths and Chinese food and steak. Hickman lines and transplants and doctors and all that are pretty great too, but it’s better when we don’t need them.
I hope you’re all doing well and that you get in touch with how your lives are going 🙂
P’S. In case you were wondering, because these things are of great worldly importance, yes my bath did indeed have a rubber duck 😀
Next stop : The Beach!
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,
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.