Tag Archives: journal

5 Years Time

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A lesson I learned recently is that a lot can change in a year. It comes up a lot with family and friends- one of the days at CYE this summer my friend Ella and I were stood chopping up potatoes and reflecting on the fact that at around that exact time a year ago I was in Southampton, under general anaesthetic having my diagnostic bone marrow taken. The situations were so different that it was encouraging to think about where I am now compared to this time a year ago!

I have this book called “Q&A a day journal” where you have 365 questions (one for each day of the year) and 5 slots to fill the question in, the idea being that you fill it in for five years, and can look back on your answers each time. Yesterday’s made me laugh at the comparison, which got me thinking and inspired this post. Here is the difference between last year and today…

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I was in a totally alien and new situation, embarking on an unexpected (and what appeared to be at first an unpleasant and unwanted) journey. Currently I don’t see it at all that way, as I feel quite distant from the person that stayed in hospital for around 6 months, who was slowly but surely losing her hair and whose world became her illness, treatment and blood results.

This year I am in a new situation again, but this time it is something altogether more welcome than Leukaemia! I won’t bore you with more talk of college but be assured that it is going brilliantly so far! I have offered to be a student representative for Psychology- their job is to meet with the teacher and the head of A levels to discuss how our class feels about the course and provide any feedback and I have already signed up for two trips so it’s all excitement!

I’ve had many people ask recently where I am at with treatment (being back in normal society is still a thrill!). Since most people know nothing about this (oh you lucky, healthy people) and often people don’t realise how much is still going on I thought I would show you what maintenance treatment looks like. Conveniently it happens to be a Wednesday, the day I take my weekly Methotrexate dose!

First up, morning tablets. Folic acid, an anti-viral drug and a stomach lining capsule. 5 days out of every month this will include 4 tiny Dexamethasone tablets- the dreaded steroids! At lunch time it’s the anti-viral again, along with a second dose of steroids if it’s during that 5 days.

The evening dose is the most complicated and contains the proper chemotherapy drugs every day. The four smaller tablets I am taking every night for the next year (they are a chemotherapy drug called Mercaptopurine) so the larger yellow ones are the methotrexate. In the evenings I have a few other ones I can take if I need them which depend on how I feel e.g. pain relief.

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Along with these tablets I have the monthly IV and a lumbar puncture every 3 months, which you have heard me banging on about multiple times so I won’t go into detail here!

I think the journal I mentioned before is a great idea, as it helps you to explore odd questions about yourself that you wouldn’t normally think about. As a nostalgic person who keeps even the most ridiculous thing simply because it is a memento, the idea of documenting the changes in my life over the 5 year span is very welcome! Who knows where I’ll be in five years time… maybe I’ll be finishing at university… maybe my Leukaemia will have relapsed… maybe I will be travelling… maybe I will have completely changed my career choice… maybe I’ll be winning Britain’s Got Talent (yeah, that’s likely, ha ha ha). Anyway, it’s not up to me! I’ve learnt to take life as it comes now, enjoying the highs and learning from the lows each time.  All I know is that it’s not worth stressing over, because that stops you from looking around and appreciating life in the moment. You lose sight of the small things you’re blessed with and forget to be someone who does those things for others. I’m not saying I am perfect at this all the time, but it is something I am trying to work on every day.

This Star Won’t Go Out

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Today’s results were
Hb 97
WCC 4.7
Platelets 64
Neut 2.7

So they are too low for chemo. I can’t say I’m sorry as it gives me the chance to go out for a meal with family some time in the week and go to pizza and Made in Chelsea night with the proper old school girls from high school, which I am really looking forward to!
I feel it is boring that I haven’t uploaded a proper photo for a while- I haven’t been taking my camera round as much or using it for stuff at home so tonight you get a photo of me holding the book I am reading, which is handy as it is something I wanted to bring up anyway…
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(The book is covering my face because I have no make up on and 24 hours in A&E always makes me cry!)

The book I am reading is called “the life and works of Esther Grace Earl”. She is named after a courageous biblical Queen. Not only do I love that, but also love that the name Esther means “star” and so the book is called “This Star Won’t Go Out”. She also happens to be a HUGE John Green fan (aka Nerdfighter) – she even met him once at a Harry Potter convention. As we all know (unless ‘we’ have been living under rocks for the last year or so, tut tut) John Green wrote a book called The Fault In Our Stars. I love how it all ties in. At age 12 Esther was diagnosed with Thyroid cancer. She suffered many complications and gruelling side effects from chemo. I suppose it is morbid curiosity that led me to buying and reading this book, but I am so glad I did.

Firstly, because she has some of the same lightbulb/deep moments and thoughts which I have had (and just average thoughts like “nuh uh don’t you go poking that needle in my arm doctor”). It’s oddly reassuring and at times I feel a weird connection with her and probably other cancer patients, knowing that my experience is normal and others feel the same. Secondly, because she has been through a heck of a lot worse than me. There are many times when I am thankful that I have leukaemia, because there are so many more worse things that I could have. It puts life into perspective and reminds me to think of others before myself. Thirdly, she inspires me to write. As much as I hate to admit it (I thought I was an ok writer but at age 9 this girl’s poems put my 16 year old ramblings to shame!) I could go on.

This Star Won’t Go Out is a non-profit organisation, led by the late Esther’s parents which is helping american families cope financially when struggling with medical bills from a child with cancer. When you think that we get all of our treatment for free in the UK and next to that consider how expensive blood and chemotherapy products are, those families need all the help they can get.

The book is a collaboration of Esther’s journal, her parents blog entries, words from friends and doctors, pictures and art by Esther which is all fascinating. I am really humbled by the book, and if you don’t mind a slightly random childish narrator at points (she was 12/13 at the time!) it is worth a read. If anyone is interested you can buy it from amazon or contact me through the ask me page if you would like to borrow it. I would love to pass it round people and share the light of this girl whose dream was to be an author, and to use her experience to help people. Both of which have now come true, though she cannot be around to see it all unfolding.

I was going to talk about 24 hours in A&E as well but something is telling me to stop here. Tonight I’m praying that Esther’s story will inspire many, and that one day I will be as awesome as her.