Better late than never, eh?
I regret not starting a cancer blog when I was in hospital. If I’m honest, I kept regular updates on Facebook, but I wish I could have reached more people, or documented all of my experiences. In some ways it’s quite late to start a journal, but also, there is a long 2 years of drugs to go for me until my life and cancer are two separate entities, so why not start now?
Back in august 2015, I was one of the lucky 32 males and 17 females between 15 and 19 years old that get diagnosed with Acute Lymphoblastic Leukaemia every year. From that, 15-20% of them will get diagnosed with the T-Cell variety that I developed. For some fun statistics, that makes the chances of me developing cancer were 1 in 500,000(ish). Let’s not forget alongside crap blood, I also had a wonderful 14cm tumour crushing my heart and lungs too, who doesn’t love winning the cancer lottery twice in one go?! Lucky me!
I won’t detail my whole story here but, I had a year of chemotherapy and it had a pretty substantial list of side effects, some rather abnormal ones too. The Dexamethasone steroids I took have also contributed to my cancer shopping list by causing a Vascular Necrosis of my right hip, which means I need to have an operation soon… Woohoo!
I also think that my hip attributes one of the main reasons for this blog, it’s not really to document my experience on chemotherapy, this blog is for my post chemo experience, the long term effects the drugs you take have on your body and the least talked about of all cancer side effects: Returning to ‘Normal Life’.
This is a side effect everyone with cancer faces.
For some people, transitioning to a life after cancer is difficult, but manageable. There are others, like myself, that have found ourselves returning to a child like state of dependence because our bodies are completely ruined from having our lives saved. I, for instance, cannot walk or stand up for long periods of time and I cannot pick up or move heavy objects without causing myself an excruciating level of pain. That makes work for a technically ‘unskilled’ 20 year old pretty hard to come by as most ‘unskilled’ jobs require being on your feet, hello Tesco, Lidl, Maccy D’s, etc. (I would like to note at this point that I do have a pretty cool walking stick given to me by an absolutely wonderful woman. Thank you shopper at Lidl who didn’t tell me her name.)
Everyone has an idea of what they want to do post chemo. Change their life, take up painting, write a book… Me? I wanted to loose all of my chemo weight, I also very much wanted to go for a run. I had been left with no muscle in my legs due to spending so much time in bed because of how ill I was. I then spent months walking a little bit every day and built my stick thin calves back up until I tried to run again. And then I did. I ran and I felt good. I felt free and happy and I actually cried a little because I hadn’t ran in over a year. I said to myself I was going to run a marathon one day. That was until my body decided to screw me over a last time before it was done. One MRI later and it turned out I was probably never going to run again. Brilliant.
Here is my dilemma. I had no intention of going to university. So, while that option is still on the table, I have no idea what I should do with my life because my plan was the RAF. Everything that I had prepared myself for since deciding at 18 to have laser eye surgery became worthless and my dream was taken away from me without even being given a chance to try it. Maybe it was life’s way of telling me I wouldn’t have had the conscience for it, maybe I’d have been crap at flying, who knows. But now with chronic pain and a big operation coming up, lets just say manual labour is off the cards.
Now lets talk about mental health, and a little bit about PTSD.
I managed the first few months well, and that was about it… not many people know how bad my head got because I kept a pretty sunny disposition a lot of the time, when sometimes I honestly would have rather given up the fight then take chemo anymore. When I say that my chemo made me unwell, that’s the biggest understatement of the century, my body was trying to give up, I honestly didn’t know if I would survive chemo.
Nobody prepares you for the friends that you make in hospital dying. Nobody prepares you for the two people you met first in hospital passing away, one with the same diagnosis as you, that messes with your head. Nobody prepares you for months in bed, weeks without as much as a trip home. Nobody could ever prepare you for having your whole life taken away from you or at a minimum being put on hold for a year. Nobody tells you that you’re going to put so much weight on that you don’t recognise yourself in the mirror. These are all things I deal with every day, some days well, some days poorly.
For 2 years I have lived with my friends being hundreds of miles away, alongside the isolation cancer makes you feel in the first place. I have lay in bed and watched people start families and begin their careers. I just got diagnosed in what I call ‘The Gap’. I was in a hiatus in my life about to move forwards, having just finished my A-levels, and now I’m stuck in my situation. One step forwards, one step backwards. I feel like I’m moving horizontally.
So, Post Traumatic Stress Disorder. Facing my own mortality. Occasional smells or feelings or sounds taking you back to being curled up in hospital, connected to a pump not being able to move. I see my bed sometimes, not as the place I sleep, but as the place I lay questioning whether I could take waking up in the morning again to have my veins poisoned. I have a lot of intense low moods because of my flashbacks to hospital, believe me when I say I try to stay happy, because I truly am happy to be alive. I guess this is just my way of finally admitting that I am struggling, a lot.
I’d like to point out, as a final note, that I am usually able to keep a smile on my face and act as if nothing is wrong, but I’m becoming better at smiling whilst also talking about how I’m not okay. I have to accept my demons. So this is my own personal step forwards, hoping that I can help other people who are also experiencing the same loss and confusion that I am.
I hope I’ll be able to update this blog at least once a week. Thank you to the McMillan workers that gave me the ideas and help starting this.