So it seems I’m dying.

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.

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5 responses to “So it seems I’m dying.

  1. You didn’t ask for sympathy Gala but anyone who could read this and NOT feel for you would be nigh on impossible. Just such a shame that I have never been able to physically MEET up with you (oh distant rellie) as I DO feel you to be more than “just a name I found via genealogy”. With your fantastic true caring of human nature, touches of witty humour and an overall great intellect, I much admire you Gala. XXXX

    Liked by 1 person

  2. Hi. You don’t know me, I don’t know you but I came here via a tweet. What a blog. I was diagnosed with a meningioma a month or so ago, benign but there, waving at me from my MRI like a squatter in my headspace. I don’t want to call you brave or an inspiration… it would seem so patronising. But look, I send you strength and positivity – safe in The knowledge that I’m sure you look like a kick-ass pirate with your eye patch. Please keep writing. I will keep reading. Amy x

    Liked by 1 person

  3. I’ve got a GBM4… managed to drag it out for 5 years so far. In the darkest of hours I turn to this…
    “Out of the night that covers me,
    Black as the Pit from pole to pole,
    I thank whatever gods may be
    For my unconquerable soul.

    In the fell clutch of circumstance
    I have not winced nor cried aloud.
    Under the bludgeonings of chance
    My head is bloody, but unbowed.

    Beyond this place of wrath and tears
    Looms but the Horror of the shade,
    And yet the menace of the years
    Finds, and shall find, me unafraid.

    It matters not how strait the gate,
    How charged with punishments the scroll,
    I am the master of my fate:
    I am the captain of my soul.”
    Good luck on your journey

    Like

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