how i feel when you talk about other people’s cancer

i am going to go through what happens when i hear close details about other people’s cancer.

their cancer is less bad than mine so their survival means nothing because i’m going to die because they had stage 3 cancer and i have stage 4 cancer and my body is full of it and i am drowning in tumours, and i am drowning in everything i hear about how it is, and what it is.

their cancer is the same as mine it is stage 4 it is bad and they died and i will die too i will go to the doctor next week and they will say they were wrong all along and it is suddenly aggressive and it is suddenly a completely different cancer to what it was when i last talked about it and i am going to die, i am about to die, and there is nothing i can do and all i want to do is finish spinning my polwarth and why is this being taken from me why the fuck is it me?

their cancer is unknown to me but they are young, my age or younger, and they died. they died after being ‘cured’ for a bit. they died after a long, ‘courageous’ battle. they died within six weeks. i have no idea how look it took to take them, but it did in the end. i too will die. i am 30 and my cancer won’t go away, it is a chronic illness, it will walk with me until it does one day take me, which will happen, but when, but when, if like that person it will take me soon.

 

i’ve had some amazingly constructive conversations with people who have had cancer about their own tips, their own situations, and their own recovery.  one woman in particular, who’s illness progressed very similarly to mine, and treatment was also similar.  but it was about practical advice. ‘this is how the liver resection went’. ‘here are some tips for chemo’. ‘i had an ileostomy for a bit and it was ok’.  similarly with the amazing and ‘inspirational’ (i hate that sort of term, but he does inspire me to be as positive as possible) man who has told me things that have helped me greatly – practical stuff, day to day stuff, advice, and distraction.  and my guide who carries the light in the dark with me, and has been there since the start next to me – she was the one who told me this would happen. i would reach a point where i NEVER wanted another cancer story again.  many other people too – things like how to manage the portacath (ie, does it hurt? is it weird?) or the treatment that comes home with me in a bottle.  but cancer narratives are really hard for me, unless they are almost identical to  mine, and survival is the outcome. is that childish of me?

i am terrified of support groups. i don’t feel like i can support anyone through cancer, and i have such a huge, helpful, compassionate medical team that i can call on them, and not weigh down other people walking this. they are there for me to repeat my cancer narrative to. the nurses, the doctors, the social workers, the cancer council people. i can tell it to them however many times i need to, and they nod and understand that i need to get it out. i imagine that is how someone who has lost a loved one from cancer feels too – they need to get it out, and it seems like, because i am there too, i will make sense of it.

i can’t.

i cannot make sense of the death of another young person from cancer. it breaks me up.  i think then of children who die of cancer. i think of their parents. i think of the loss.  i think of young parents. i think of old parents. i think of teenagers. i think of everyone who dies from anything before old age, with lives that are not cut short but are just shorter than other people’s lives.  and the sting and betrayal i know i would feel at that, even though nothing is set in stone. the words ‘you have //// to live’ mean little. people can be given 6 months and go in 2 months, or 3 months and live for years.  it is all unknown. it is all wild and strange.  i don’t want to know how long i have, and no one has that number yet. i hope to never have a count down to finish processing and spinning what i want to do, and hugging my loved ones as many times as i can. tick tick. i can hear it anyway.  each day. tick.

so please. please. if you need to talk about other people with cancer, or tell a cancer story, mute me.  or do it somewhere i won’t see it. or create a facebook filter so it’s not on my wall. or just… don’t tell me.  just don’t. i can’t see it. i can’t hear it. i cried last night in an episode of Grand Designs because the husband died of stomach cancer.  please.  those are things i cannot avoid. a direct in my face story told by a friend? i can, with everyone’s help.  just please. no.

what is interesting is, i don’t feel like that about mental health. i am in a place now where if someone comes to me for help i feel honoured, and all i want to do is hold their hand (in words or in person) and help them feel valid, and alive. i can hear about their struggle, as an individual, and i can give some advice.  i am not scared. i can stand with my bipolar and help others as well. it is a chronic illness as well.  and for other mental health advice too – it is a pleasure for me to be able to help.  i get it. i know how my bipolar words inside out. and i have spent enough time of it being out of control to know how it feels to be wildly stuck inside the mouth of it, and not knowing how to crawl, let alone walk, away from the voices and the colours.  maybe on the other side of cancer, i will feel like this too.  i can hear the stories. i can stand and hold the hands of people with these stories. but right now? my hair is half gone, my chemo was delayed, and i’ve had a bloody cold for a month and a half.  yeah, i think what i thought was a side effect was a cold. alex has a matching cough, and almost identical symptoms as my ‘side effect’.  down to the fever. the night sweats are something different, and grosser.  so gross. so soggy.

if anyone has night sweat advice – please let me know.

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About elizabeth

various things.
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4 Responses to how i feel when you talk about other people’s cancer

  1. cardiganlibrarianspk says:

    hi there.
    i know saying ‘sorry’ doesnt mean much probably, so i will say i have empathy for your situation. i am following your story closely. we have never met before, but rest assured that i have you in my thoughts a lot.
    it must be very frustrating and scary going through what you are going through and having to deal with probably well meaning people saying the wrong thing.
    i wish you all the best x

    • veritas says:

      thank you so much. i really appreciate the support, and messages (and twittering!) because it makes me feel… i dunno, still a part of my library family despite being out of it all.
      so many well meaning people. so much …. accidentally hurtful stuff. it’s hard. just need to focus, focus, focus on getting better.
      xx

  2. It’s quite normal (I think) to not want to be around things that remind you of painful thoughts. I remember I couldn’t watch ANY TV program that featured hospitals after my chemo was done. It took about 18 months before I could do it again. And the other day I was in a conference room that smelled just like the chemo room and I almost vomited – I had to leave immediately. The body is an amazing thing, and the linkages we have between sights, smells and feelings are never to be underestimated. You’re doing a great job. Keep up the good work. J.

    • veritas says:

      i have CRAZY things like that with memory- i cannot stand this one dish that was one of my favourite things, that we ate on the night i was diagnosed. can’t even think about it without feeling ill. i already feel better about the new cancer treatment ward, because it smells like ‘new’ rather than like ‘cancer ward’.

      yeah, i can’t do anything with people dying in it. the grand designs was one push too far. GRAND DESIGNS!!! brains are fascinating things.

      thanks so much, Jennifer. i don’t feel like i’m doing much of a great job, but they cut the 5FU ‘push’ out of my regime before the pump attachment, and i feel a million times better. didn’t realise how much that one push of a syringe could make such a huge difference!

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