and for lo, it goes on – stomarama

the stoma seems to settle for a bit, and then just flair up again.  i’m getting a better handle on it, but i had a bleed in the middle of the night. i didn’t need to go to the ER, but it took out a few hours to make sure it was ok, and i called out the night time community nurses to help me in case i couldn’t get it to clot on my own with pressure. my stoma itself keeps swelling, so i keep needing to change the sorts of bags i have – there’s now about 10 boxes of bags just sitting around i need to return, or do something with, because if the stoma is too big for the hole in my bag, i risk knocking the edge, causing more bleeding, and starting the cycle again. my stoma nurse admits that this isn’t a problem she’s encountered, because most people get them after the cancer’s resolved or being, not when the cancer is essentially ripping the body to pieces. sinking boat, sinking boat. we are plugging up the gaps. the water keeps coming in. all we can do is try and slow the sink, make it easy, make the last gasps of air between everything else. right now, for no rational reason that i can think of, the fucking air isn’t draining from my stoma bag. it’s filling up like a goddamn hot air balloon, meaning i need to fiddle with it and risk a bleed, and you know, i just. i just don’t even. i feel resigned, tired, frustrated, and so completely over it.

the output looks jaundiced and ill. somehow, i don’t. maybe it’s just my excessively full of carbs diet, or my otherwise … god knows what’s happening in my body happening. i don’t particularly feel like more CT scans just to be told ‘well, bad shit’s happening’ or ‘it’s hard to tell what’s happening’  or ‘well, the bloods are doing this so we’re not sure it matters what’s happening because the liver is dense and weird anyhow’ because it’s fairly clear that bad shit is happening. and more scans means more appointments means more needles means more checking. maybe there’s a drain they can put in for an errant lymph node. maybe we can just hold it all off for a bit. maybe i can just try and have some nice days where i do nice things like get that soda i like.

the medications they’ve put me on now to help with the stomarama have been a strange mixed bag. i think the steroids have helped my mood. i know the beta blockers – to slow the bleeding – have done incredible things for background anxiety, and already lowered my heart rate.  i’m still not on blood thinners, which is both nice (no needles) and anxiety provoking (what if i get a clot??!?!?!). i start chemo tablets again on wednesday. the lack of anxiety has, in a lot of ways, slowed a lot of my sense of urgency about everything, and i’m not sure how to process that – is this good, is this bad?  the bloods should indicate if i should go back on the clexane. i guess. what’s going to kill me faster? what’s winning here? Quality. Of. Life.

quality of life is such a key, and strange term. i struggle to know what quality consists of. is it me feeling like i can deal with this? is it my capacity to be able to wake up each day and see the value and the richness?  last night, in the middle of the awful, i reminded myself that, were i not going through this, my life wouldn’t actually be some perfect paradise. that sans cancer, everything in my life wouldn’t be MAGIC and GOOD. we’d still have to do the dishes, and i’d still get depression sometimes, and my partner would still go through things, and every night would not be some amazing joy filled orgy of adventure and thrills. it’s a simple thing to forget. it is also something i wonder if i do to try and minimise what is going on, in order to give myself more guilt about ‘how it could be worse’.  that perspective is fairly useless, and i know that. i guess we move it around as we need to, in order to cope and understand what we need from ourselves.  the cats are grooming each other’s faces and they are sitting on my feet, being emotionally supportive of me.  i am thinking about this, about eating pasta bake, about reading my book tonight, about going to tasmania, about things in my life with value and goodness. i do not want to just sit here thinking about the fact that my bag isn’t deflating like it is supposed to be.  quality of life,  quality of life. definitions change.

i find myself less patient at the moment, perhaps more than i have ever been. i pride myself on trying to be a patient and kind individual, but something snapped in my head about my ability to just take stuff. it is liberating.

it seems, in the course of writing this, taking a break, and wandering around, the bag is settling. quality of life.

when i was watching Grand Designs, they mentioned the guy building the house in it was 50. i got suddenly for a moment exceptionally jealous that he got to be fifty.

right now, i just want to make plans to go to tasmania and to go back to the zoo again for another zoo sleepover night where i get to stay next to a big animal and watch them sleep, or at least know they are there, and see them eat treats.  i get to make plans once we’ve talked to my surgeon tomorrow, and i get to think, then, about being alive in June.

we’re ordering my stoma supplies for June next.  so, you know. optimistic.





About elizabeth

various things.
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11 Responses to and for lo, it goes on – stomarama

  1. peter konig says:

    Meant to add:

    As a guy edging close to 50 (next year) this was extremely meaningful to read. Thank you.

  2. Jessie says:

    I think about you every day. You are teaching me, and many others a lot. This blog is impactful, and your writing is powerful.

  3. Sandy says:

    Hi Elizabeth. I just wanted you to know I discovered you and your blog while listening to the “Death, Sex and Money” podcast. I feel all sorts of feelings for you. While not usually at a lost for the written word, I don’t even know how to convey my feelings about the ordeal (understatement to say the least) you are experiencing. I just want you to know that my thoughts will be with you. Hugs from the Georgia (U.S.A.)

  4. Jess McLean says:

    You write so well – thanks for sharing your stories here. That optimism is totally admirable!

  5. vreppert says:

    Elizabeth – I learned about your blog on the Death, Sex, and Money podcast this morning and have been reading your blog posts all day. You’re a wonderful, evocative, and thoughtful writer, and capture the special hell that is Cancer Land so well (my mom and dad both died back to back very untimely deaths from pancreatic and neuroendocrine cancer respectively, so I’ve been living there myself for a couple of years, and know the sagas of livers and their tumors too well). In the coming days and months I wish you much love, wisdom, strength, and quiet, and lots of quality time with animals, plants, and non-stressful caring people. There is nothing to be afraid of; every day is just another day in our life, until it isn’t, and none of us know when that day will be, so there’s no sense in fretting. Enjoy your life and keep living it richly.

  6. I really love reading your blog. Just wanted to say. I’m sure you’re busy getting ready to sleep with bears etc. but I look forward to your next post.

  7. Ah, the good old ballooning thing. I identify with stomarama. I’m glad it started to deflate. It would be wonderful to sleep in proximity to a large animal.

  8. Emma says:

    Love your words.
    Thanks for sharing.
    Emma 🦄

  9. Narda Coble says:

    Hi sweetheart. I’ve discovered your blog. Thankyou for sharing. It’s nice. Xxxx

  10. trivalve says:

    Hello Elizabeth. I ran across your story yesterday. I was attracted by your comments about the portrayal of the ‘state’ of having cancer. Battle, fight, white gowns etc. It resonates. I was diagnosed with bladder cancer in 2012. After chopping out the tumour, a second dip and then 33 (I counted) doses of ‘immunotherapy’ (a dose of tuberculosis pumped up the urethra – better than chemo but still makes you crook) over 3 years, they admitted defeat and whipped out most of my urinary tract. I have a stoma too. I’m lucky – it’s urinary. Irritating but better than the other options. So for now I’m winning the ‘battle’. What was the battle though? I did what I was told. By doctors and nurses. Nothing else to it. How else do you fight? I got fitter and lost some weight, ate better. That was the extent of my input. So your comments I agree with wholeheartedly.

    I’m in Canberra too. I’m a 61 yo bloke. Probably sharing some of the same oncologists/surgeons/nurses etc, who knows? A friend of mine died of liver cancer this time last year. I felt guilty because he copped it far worse than me and I was basically still functional. I still feel guilty, especially compared to what you are going through. But I wait for it to come back, any time at all.

    Nothing I can do or say can help you. But I wish you all the best. Thanks for the stories, I have a mix of sympathy and empathy. Pls excuse the pseudonym.

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