Amy's Brain

The egg in my head

Update 13: Therapy & Dying


warning: snotty one

I was sad. I went to see a psychotherapist. I’ve nearly always been pretty pleased with my good mental health, especially now as it becomes clear that my physical side is so very flawed. Over the summer, I felt very, very sad. I think my sadness and emotional trauma is pretty much reasonable and proportional given to the experience I’ve been through and I decided a little help might be in order. I learnt a lot and it’s helped me to have more positive relationships with my nearest and dearests. I’d recommend it. A few of the things I learned

  • I’m not exactly scared of dying. The dying bit isn’t the thing that worries me. It’s the responsibility I feel toward my family and Gwalia. It’s my job to look after them and I struggle to shake the pressure of that responsibility.
  • There’s a coin. It has two sides. That’s what they have.

Initially I saw the positives. Of course we’ve talked about it at home, but I haven’t spent a that much time preparing for death or speaking in detail about the dying with my family. “I’m going to get lots of notice” I explained to the therapist. The expected progression would mean that once the start gun is fired the decline is sharp but I’ll still get 12 or even 24 months notice of my death. I proper countdown. I can make plans then. It’ll be fine.

The flip-side is that’s actually quite a slow decline. I don’t know a huge amount about the brain cancer dying business and I tried not to read or think about it too much. So I didn’t read about it. It didn’t stop me thinking though. Because the cancer can come back in any part of my brain I can’t tell which bit of my brain will fail first. I suspect the sight. The tumour is on my optic tract after all so that seems like the most likely place. I ponder what it might be like to be blind. My therapist suggested it might not be that bad, if you loose one sense the others become more sensitive and for some people that can be a positive experience. This makes sense, I’m pretty good at seeing the positives. Except, you might remember, I already have a pretty hearing deficit. Arse. If only the tumour was on my auditory nerves, I’d rather loose my hearing totally than be severely deficient in both. It’s a fun game, you should try it. I’ll call it “Deaf or Blind?” What’s your favourite sense?

Now whenever I see people with a big brain injury problem I wonder if that might be me. Will I lose control of my limbs or my mind? Which limbs might it be? What would that be like? What if it’s my bladder? Bowels? Mouth and swallowing tools? Maybe I’ll be one of those people with the permanent shakes or jerks. But what will happen if I can’t swallow? I’ll need a feeding tube. That won’t be nice. The thoughts go around and around, I can always think of a worse bit of body to loose then I add a bit of detail into the previous possibilities and that one begins to seem like the worst one. But what about if I can’t move at all? Do you think that would hurt? Where will it hurt? Do painkillers work on that sort of thing?

Or, will it be my mind, my intelligence or my ability to communicate. Will I lose all my words? My ability to speak or my ability to understand? My ability to recognise things or people, speach or sounds. Or all of these things. What if it hits my emotional senses and I become violent or aggressive. Or suicidal. Shall I go to dignitas or jump off a cliff? I read that the palliative care in The Netherlands is quite nice. But we’re coming out of the EU so maybe that’s off the table anyway.

I can keep this network of thought trains going indefinitely. It’s sort of boring to go on and on but also fascinating and horribly addictive. This is the joy of brains and brain cancer. Brains are really special, they have a role in every aspect of our minds and bodies. Not for the first time, I find myself wishing I had foot cancer. Cancer, you can have my foot. Just take it. Anything but my brain.

Each fantasy disability comes with a question I’m not able to avoid. What sort of burden will I be? How will they manage, firstly without my help to do the work about the place but with the additional effort it might take to look after me.  It’s a double whammy and I don’t like it.


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