So 2 weeks ago I was told that I only have months, if that, to live. The chemo isn’t working and there are no more treatments available, and I’ve tried many alternative treatments. As my body slowly dies, I want to highlight the suffering of pontine glioma patients, who are largely children and teenagers that pass away within 1 year of diagnosis.
Treatment and research into a cure is limited and funding for such is much lower than most other cancers. This needs to change.
So here are the highlights of my illness so far:
Hearing loss – I am currently so deaf I find it impossible to join in conversation and the nurses have to talk to me like a geriatric.
Speech impairment – I currently have very blurry speech and I find it very hard to express myself, this most probably will progress until I can’t talk. Because of this predicament some people have a tendancy to speak to me like a special needs individual.
Swallowing – I have difficulty eating and drinking thanks to swallowing problems. Mealtimes are massively daunting. Plus I can hardly taste my food thanks to the meds.
Constipation and urinary retention – nuff said.
Balance – I have none. I’ve been bedridden for 2 weeks.
Mobility – Ditto. My limbs are weakening progressively, I can feel it. Will it get to the point where they stop working completely?
Acid reflux – This is a pain in the arse because I can’t eat what I want to. This currently consists of my favourite foods – tomato, spicy food, chocolate, basically anything that’s really tasty.
Eyesight – I have double vision thanks to my right eye deciding that it’s not gonna work anymore. I currently wear a stylish pirate style eye patch, it’s very fetching.
Mucous – this most glamorous of conditions means that I get a build up of mucous in my throat which is massively irritating and uncomfortable. I have to use a specialist medical hoover to attempt to clear it.
Nausea – another delightful side to this condition. Chucking up my dinner is not good as I’m hardly eating anything as it is!
So currently I’m not having a good time, and haven’t done for over a year, to the point where the prospect of death seems a potential relief. Life is too cruel, I’ve had enough.
I write this blog not to gain sympathy for myself, but to highlight the suffering of too many children and teenagers. It will be too late for me but more funding and recognition could help more in the future.
If I’m still capable, I will continue to bore you with my progressing symptoms in order to highlight the horrors suffered by too many young people.