This post is almost directly copied off my Facebook post published on 4/2/17:
It’s the fourth of February again and with it comes both World Cancer Day and the anniversary of my own diagnosis. Last year I wrote a grumpy ranting post largely about how wrong it is that battle rhetoric is used in relation to people being treated for cancer. I still stand by that and would strongly recommend reading it if you haven’t (I’ll post it on here soon). I’m afraid this year’s post will have significantly more focus on my situation, so sorry.
This year, I’m going to grumpily rant about the importance of appreciating the little things in life like some kind of hippy. I know that the things I’ e experienced in the past four years have been enormously different to the normal life of a teenage and therefore my problems have been much more serious than most – for example the thought of complaining over having a single random blood test or cannula is absolutely ridiculous to me, for who this takes several attempts at least. While I don’t want to sound condescending because I know that everyone’s problems are important and serious to them, I can’t help but find most of them trivial. This sounds like I’m going “oh my problems are so much worse than yours” which I guess I kind of am but, to be fair, it’s hard to care about someone having a bad hair day when you have no hair.
Anyway, the reason I’ve chosen to focus on the whole appreciating the little things is due to a series of events that have been taking place since Christmas Eve. Well, I guess you could say that it began in September when I found out I’d relapsed in the central nervous system again and then once more in the beginning of December (which I posted about on Facebook). To treat the disease in the central nervous system, they normally do something called a lumbar puncture (injecting chemo through the lumbar region of the spine) but since I’ve had so many they weren’t able to do any more of those; the solution was to have an Ommaya reservoir inserted. An Ommaya reservoir is a sort of catheter that gets inserted into your head – they drill a hole the size of a 5p in your skull and it goes down into the brain and you can insert the same chemo you’d use for a lumbar puncture directly into the brain. My understanding is that you manage to get a greater effect from the drug. Unfortunately for me, I was much more sensitive to the chemo this way, throwing up immediately after despite trying a range of anti-emetics. Looking at my symptoms now, the doctors think I ended up with a toxicity from one of the drugs they were using. This was compounded by the radiotherapy, of which I did end up finishing the cycle. I completed the head and spinal radiotherapies but didn’t have the last four head blasts.
Progressively as I went through the radiotherapy, I started getting weaker and less able to move. On Christmas Eve, I had to use crutches to walk and it only started going downhill from there. On Boxing Day, we were admitted to Southampton Hospital again due to my progressive lack of mobility – let me tell you, Christmas is not a good time to be in at hospital since everybody is, understandably, on holiday. An MRI of both brain and spine after most of the standard cohort of doctors had returned showed nothing unusual but the team looking after mean inferred that the problem was nerve inflammation. Unfortunately the thing with nerves is that they can’t always be cured and any improvements that do happen may only last for five minutes before changing, which is beyond frustrating. Currently, just over a month of the diagnosis, I can’t move anything below my waist beyond twitching my toes. It’s really not a way to live.
On top of that, my consultants and doctors also made the decision to stop active treatment since clearly nothing has worked so far and they’re running out of treatment options. Currently they estimate that I have about a month left, which isn’t long. I know many people would be distressed with the reality of having such a short time but I think after four years of having the thought niggling at the back of my head and a feeling that I was always going to die young anyway. After all “to the well-organised mind, death is but the next great adventure” so I think it’s other people that are going to struggle with the reality of the situation more than I am. Also going back to the trivial problem things, I’m sure you can understand that the inability to get a lift to some trashy club so you can get drunk is a bit laughable to me when last night I sat and planned details to my own funeral.
So, yeah, that about sums up what’s been happening with me and hopefully summarises why I’m encouraging you all to focus on the little things. You never know when things might go tits up and your life utterly changes. These little things like the ability to walk – God do we take these things for granted and you never appreciate how important they are until we don’t have them anymore. Feeling like I could move my leg muscles and then just physically being unable to has and continues to be the most frustrating experience of my life, hands down. I mean live your life how you want to, I don’t want to tell you what should be important but I’m just asking that you pay attention to that gorgeous sunset a bit more, tell people that you love them, do what you really want to do. Not in some crappy hipster ‘YOLO’ way but a way that actually means something to you.
While it may be too late for me, donating to a charing supporting World Cancer Day – see my Links page for ideas – with a Unity Band or donation will hopefully mean there may be more options for someone like me in the future. My hope is that all the treatment and odd things that I’ve experienced do help forge new treatment drugs or methods and help someone in need out; otherwise it seems a bit pointless, doesn’t it?
Thank you for reading to the end!