last week i was admitted to hospital with a really high temperature — suspected infection, abdominal pain & really low blood pressure. the day before that, i’d had a colonoscopy that showed my primary tumour had grown significantly, and i needed surgery.
given the timing? i was kept in.
this is one of my longer hospital stays. i’m on fluids only, and i am so hungry i feel like i could consume my own arm/leg/body whole. i’m in a different hospital to my normal one, and it’s luxurious compared to the cancer ward i have been in, in the past. i’ve been chilling out in the surgical ward, blood test after blood test, blood pressure always being checked for another drop. i can’t leave the room due to my white blood count, and most of the time, people are only allowed in while suited up in infectious disease protocols to stop me getting sick. everyone has been very stylish.
this has been survivable because of the friends & family who’ve visited. Alex, and my friend Fi, have been here almost every day, and phone calls from family and friends. i have a line up of toys and flowers and chocolate and a poster of morrissey for my wall. people touching in to let me know they are thinking of me – a pile of magazines including The Believer (which i am ALWAYS meaning to buy/read). people: when your friends are in hospital, let them know you care, because it’s one of the only things that consistently leads to sanity and a feeling of safety and value. i feel very very valued right now.
my medical teams are … there’s a lot of them. but today, i started a process which is difficult but important for me: i have met up with and made plans with the palliative care team in the ACT.
there is no cure. there is no point past which i will not have cancer. i will die of this disease. i know i’ve said this before, but nothing is more clear than when you see that paperwork moving you over to palliation from just oncology. and it means hard conversations.
we started with discussing my ongoing issues around pain management, and how i need to learn to be better at admitting when i am in pain, and dealing with it with Pain Killers. any other way of handling it is not just stupid and childish, it is bad for my health. they were much more diplomatic, but that’s the case. i was putting alex through hell by letting myself be in that much pain, rather than accept that i need some help.
but there’s one problem we’ve had since i was diagnosed.
i love it. i love it so much. and it is up three flights of stairs, and it is not suited to someone who will need mobility access. we have to move.
we’re looking into how to do this, when we will (soonish) and the logistics. it breaks my heart to do it, utterly, but there’s not really an alternative. we are starting to look, and starting conversations about what we can do to make this happen. this time, we need a garage. alex made a stack of concessions for me, and it is my turn to make sure that our new place is what she needs. and it needs to be on the ground floor. i have this little fantasy of having a courtyard, of an enclosed run for the cats. i’m thinking about ways that we can make a new home as loved and comfortable as the one we have. and i think about how much i love my space, and struggle there too because of the diagnosis, and i almost feel relieved that now, we’ll start again. and i will miss our little weird apartment so, so much.
i hate moving though. that’s going to be the hard part. but we need to do this, and we need to do this before my mobility is compromised.
my surgery, by the way, is on friday. they don’t think they can remove the tumour, so it will remain in there. they are giving me a colectomy – which results in a stoma, and a colostomy bag. my bowel will bypass my rectum and anus, and i’ll be shitting into a bag for the rest of my life. i was so scared – cripplingly terrified that this would one day be what i had to face. now, i am facing it. now, i think i am ok. i am not happy about it. but if it relieves the pain, i more than accept it. it will be an adjustment. it will be a change. and my life has been a constant ring of changes, one after another, hopping in and out of them, wading in the darkness.
i think this is something i will write about once i’ve done it. right now, i am frightened. i feel like the fear is under control, and the fear is something i am managing, but a part of that is admitting the fear. and regardless, keeping on going.
right now, i’m mostly hungry.
Burger (beetroot, pineapple needed)
buffalo wings with blue cheese dressing
thai green curry with tofu and vegetables
thai red curry with duck and lychee
pasta. pasta. pasta. like, the best fresh pasta from the markets. home made sauce.
cheese. cheese for the pasta. hard cheese. the ODO cheese from Bruny Island.
sausage in bread, with tomato sauce.
it’s savory i’m craving. i am eating so much solid food when this is over.