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…
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.
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.