Two weeks ago I had an operation at the John Radcliffe Hospital in Oxford which I wrote about in my previous post Another Hospital Stay. The operation was closely followed by another cycle of Pembrolizumab. I didn’t realise how much of an effect a general anaesthetic can have on a person, I’ve had a lot more rest than usual and have been sleeping around 10 – 11 hours a night. This weekend things haven’t gone exactly to plan, having a severe bout of sickness has meant I’ve been on bed rest for the last couple of days, so all my work and bank holiday plans have gone out the window. No mater how much you work towards something, how much time and effort you’ve put in, cancer can take that away from you in an instant. After a couple of frantic calls to the chemotherapy 24 hour emergency helpline fearing that I would need to go into hospital things have now eased off. An unplanned hospital trip is my worst nightmare, and it with it being bank holiday could have been a long ordeal.
I have lots of celebrations coming up in May and a busy few weekends, including a trip to Prague. Its never easy living like this, life isn’t always as it seems from the outside. One minute I’m busying myself with work to distract myself from reality and the next I’m napping for numerous days in a row, or suddenly unwell. I’m either stuffing my face or have no appetite and I’m not really feeling a happy medium at the moment. Situations like this make me wary of making new plans. This summer I am going to six weddings, but I’m now panicking I won’t be able to make it to all of them, no matter how much I want to be there. In the past I’ve missed a number of weddings due to surgery or hospital treatment, so I’ll be hugely grateful if I manage to attend all of these event over the summer months. Cancer is my new reality and I have to take it one step at a time.
I don’t often let things hold me back but sometimes my situation changes rapidly and things become out of my control. Having my operation with one weeks notice was hard, it felt like bad timing, but with treatment cycles every three weeks there was never going to be a good time. I might not always portray it that way, but life isn’t a walk in the part, I struggle a lot with finding balance, I just try make the most of things when I am able to, but sometimes that comes at a price.
I often lay awake at night thinking about my future, and if there will even be one. We all know how this will end, but it’s still impossible to believe! Surely this can’t be my life? Of course the prognosis is bad, but it appears Pembrolizumab has given me a life line for now. Sometimes I don’t know what to think anymore because it doesn’t feel like this is normal. I’m sill working and going about my daily life. How can this really be happening to me? I know I have to accept it as a consequence of being alive, but lately I have been finding that waves of illness and generally feeling exhausted are becoming more and more frequent. It saddens me to think my life has become like this. A new reality.
I know I’m lucky to have lived well for so long, and that despite a few bumps in the road recently, for the most part I am continuing to do so. There are so many people who have been taken too quickly, or far too soon. Shortly after starting my own blog I came across two incredible blogs from melanoma patients who have since passed away, Wrestling Melanoma and Dear Melanoma. Reading these blogs made me realise that I wasn’t the only young person going through such an ordeal, and they gave me the confidence to keep writing about my experiences.
Like many Stage 4 patients I know what’s coming, but I can’t imagine what my family will do when I’m not here anymore. In some ways I refuse to believe it, because for me It would be accepting defeat. I have already been alive for 6 and a half years since my Stage 4 diagnosis, around 5 years longer than predicted. I have learnt that sometimes there are situations which we cannot change, no matter how much we want to. Although we don’t have control over what has happened previously, we are the ones who make our life what it is. I could look at this negative situation and (often rightly so) see nothing but darkness, or I could look and see the glimmers of light which show hope. I guess it is how we deal with these situations shows our true personality.
The bottom line is, it really doesn’t matter what type of cancer someone is diagnosed with, how old they are, or what the overall prognosis is. When your life is on the line and it could be cut short without notice its completely terrifying. Wondering if you are going to live or die or not something anyone should have to go through. It is ok to not have the answers, I know I don’t. Its really difficult to fully understand what goes through another persons head until you’ve experienced that death is there, just waiting for you around the corner. Sadly its a frightening reality for some.