it has been eventful.
first of all, a content warning: Blood, and Stoma Stuff. if you are new to having a stoma, please read this taking into account that i am on blood thinners AND chemo. i had a bad experience, which will possibly something you may, but please don’t let it freak you out. overwhelmingly, mine has made my life better, and the reasons it’s a pain are not the stoma on its own! they have issues, they are ick, and you will have struggles, but you CAN do it – and if you aren’t in a point to be reading bad stoma experiences, please stop here.
i will be talking about bleeding as well. if that’s not a thing you are ok with, be wary.
second of all: i am aware of issues with zoos. please be kind and let’s all leave the zoo conversation for another blog, k?
i have had this Thing booked at the Canberra Zoo where you stay in this fancy hotel room in the middle of the zoo in an animal enclosure. we got the bear! she is a rescue bear from a circus, and old and sleepy, and she likes grapes. i have always wanted to do it; because it’s fanciful and over the top and who stays at a zoo, seriously, but it’s not cheap, but i scoffed at the cost on impulse and booked it for last night a few weeks ago, for as soon as we could get in. i really wanted to sleep near the bear.
in the morning, i had a blood transfusion. my iron’s a bit low, it’s no big deal, i get them sometimes. and the day goes on, post transfusion. i eat pasta for lunch. i read some dumb stuff online. i go to change my stoma before we leave so i don’t need to worry about it later.
and it had an arterial bleed. not major. we aren’t talking huge amounts of blood loss – or much at all, but it spurted, and seeing blood spurt from your body – particularly a stoma which is the colour and texture of the inside of your mouth – is just this automatic ‘holy SHIT this isn’t supposed to happen’ sort of thing, and i couldn’t make it clot after 20 minutes of solid pressure. i had a complete breakdown in the bathroom, mopping blood off the floor and screaming ‘i just wanted to go to the zoo’ over and over and over again. like, this small-ish thing (it’s not a big bleed. it would have stopped probably sooner if i wasn’t in hysterics), completely broke me. i realised with this sudden huge weight that for all this time i have been carrying this feeling that what i am going through is minor compared to what i am doing to everyone else around me.
that is bullshit. it is actual legitimate bullshit i’ve been telling myself, and i don’t know why.
i expect i should pick up every piece, that i should not feel as bad about these things happening to me as when they happen to other people. i feel like that when my chemo day is delayed, or i am sick, and someone else is put out that this is worse on them, than on me. i feel like asking for lifts and getting people to help me is more of an effort and harder than the fact i’m often getting said lifts to chemo or doctors appointments or other horrible things. i focus on the fact that my crying makes other people sad, not the fact that i am crying.
but last night? it was entirely selfish. no one else was going to give as much of a shit about the zoo thing (WHICH WAS AMAZING) as i did. no one. this was my thing. this was something i desperately wanted to do, so badly, and this fucking bleeding falling apart worthless miserable body of mine seemed still stoic and determined to take it from me.
i called my nurse care co-ordinator with no idea what to do. i was barely able to speak, but she talked me down enough to get me to call for 000, got an ambulance whose paramedic helped me into clothes while i was sobbing naked on the floor in the bathroom and yelling about the zoo while trying to mop up blood, and got me to the hospital. my oncology team, remaining as always as people who i owe my life – not just medically, but quality, but everything to – managed to get me seen to, triaged, and a senior ER doctor who chemically cauterised the bleed (which had pretty much slowed enough to not be an issue, but i didn’t want to take the chance), and to just let me out without waiting for blood results or anything else. by some amazing chance, the man in the bed next to me’s brother was my last ambo (from my previous bleed) and he heard me crying while i was waiting. he bought me tissues and patted my hand while i sobbed hysterically. i don’t know who you are, you incredible man, but i fucking owe you a chunk of my limited sanity. the kindness of strangers, of loved ones, is astounding. i am surrounded by such huge kindness, such huge generosity. i think it’s… i get overwhelmed just wanting to give back, to give and give somehow, but i don’t know what i have other than words really to do.
i was hours late, but we got to the zoo in time to see the lioness get some food before dinner. we went on the tour this morning. i slept near a big brown bear. i did the goddamn thing, even if i didn’t get to do the afternoon things because i was at the hospital. i won. i fucking won this goddamn round, and i will be damned if i don’t win a few more like this. i am tough and i am stubborn. i freaked out during the dinner, and had to go stare at the fish after having an anxiety attack and needing to get to the bathroom to cry. and i ate my dinner. i kept it together through the evening, and i cried a bit, and i talked a bit to alex. and we slept a bit later, but in the middle of the night i got up, and i saw the bear sleeping up against wall, her giant paws and my tiny hands, and i ate a mini-bar chocolate and had juice because i am really just a 10 year old with mini-bars (i love them so much for no rational reason).
the whole thing taught me a lot. i couldn’t sleep much last night – i was wired as fuck, and my brain felt like it had been fried. i disassociated in the hospital because i was so upset – my mind floated away because if i stopped to think i started to shake and almost scream with the pain of having to keep doing this, of the constant effort and stress and anxiety and sheer force of will i have to keep doing, every day, to even just stay alive. even on the days where i’m just drinking juice. on the days i go to cafes. on the ones i feel feel gratitude. this is really really hard. people with cancer reading this? you are permitted to feel as though this is hard on you, and that you are falling apart. you are permitted to feel that real honest truth: no one else, a lot of the time, gets it. it is bitterly isolating, and so, so lonely, and just so hard. the contact i share with my other cancer folk has been so vital for me, because the different angles on the same sorts of experiences help. but this is you. it is your body. it is you and your body. in your body. and that is something that situates you as completely alone. it is ok to feel as though this is hard.
i’m off clexane for a week. we need to sort the bleeds out. i need to sort how i take care of myself a lot better. significantly better. i have been blaming myself and blaming myself over and over again, and no, no no. no. this has to stop. this isn’t my fault. this isn’t my fault. people care about me, and it is going to hurt, and i am going to need things from people, and that is ok because as humans we DO need things from each other, and that is what makes friendships and relationships and people better, and it is OK to want these things and i am not weak or stupid or childish to want to think about my needs now.
i want to do the zoo thing again. this time with the afternoon tour.
here are some stoma tips though, guys (obviously listen to your Stoma Professionals not me, but this is what i learned):
call your medical professionals. get them as soon as you can, and listen to them. do not be afraid to call emergency in your country. it is an emergency if there is blood spurting everywhere, and you need to get help. if you are confident you can clot it, then wait it out (my stoma nurse said) but if in doubt, call them. you aren’t going to end up stuck in the hospital for the week after a small bleed, and if you are with palliative care, they should advocate for you to get home as soon as they have clotted/cauterised it.
it is ok to feel anxious.
it is ok to have a breakdown about something scary.
try and stay calm. don’t try and fix everything. but try and try and try and stay calm.
it is ok to feel hopeless, helpless, and like you have no idea what is going on.
there are people who will help you. they are your doctors. let them help you. i have an astonishing medical team. the melbourne move? it breaks my heart to not be able to do it. but not having to leave my oncologist and nurse care co-ordinator actually feels more important right now.
(for those interested, the zoo thing is Here)