there’s a point i want to make about this picture other than how beautiful the composition is: it is about a month old. and i don’t look a damn thing like it any more. the face, the posture – i’ve shifted. i look sicker. but the ones i had taken when my sister and mum visited this week? my face looks calmer. it looks softer. and it looks like i have finally started to let go.
i came to a really important decision this week.
the night after my previous post – my day leave post, i had a stoma bleed at home, and i couldn’t manage it. it wasn’t a serious bleed, by any means. it wasn’t a huge amount of blood. they would have taken more blood from a blood test. but i just can’t live like this. i can’t live with the uncertainty of a bleeding piece of bowel protruding from my stomach; a time bomb waiting to swell the bag against my thigh of warm, bright red blood. and there’s no set idea of time. no predictability. no idea. at any moment, i could just have a bag full of blood, hanging off me. and then, what do i do? is it bad enough to go to hospital? do i just throw off the bag, stare around the edge, and try and clot it? do i just act like this is ok, like i am ok? i’m not ok. i’m not ok. i am not ok.
this is my body, and this is me, and this is my body in end stage cancer. there is no shame in this, in these end stages, and there is no weakness in my death, no failure as the inverse of success. as always, there is no battle i am losing.
but this time:
i was brave. this time, right now, i stand up and i say i am strong, and i am brave, and i am proud of myself, because i have chosen to stop chemotherapy at the time that is right for me, and i have chosen to go into hospice care at the time that is right for me. my doctors all support and encourage these decisions as also being right for me – as a part of what has always been my longer term treatment goals and aims, and my own quality of life decisions i had set up. when it looks like we’re getting to the 3 months mark, we start palliative treatment only due to the limited benefits of chemotherapy according to a lot of clinical studies. thank you google you are not a doctor.but this time, the doctor backed me up. he looked at me with great kindness and compassion and told me that this decision would very likely offer me a quality of life and in fact, perhaps, a lessoning of symptoms for a bit.
it is not easy to say ‘i am not going home again.’
it is not easy to say ‘i am ceasing chemotherapy now, because the treatment is causing me more physical discomfort than i am willing to tolerate for the gains.’
it is not easy to disregard the notion that ceasing treatment, and choosing to go into care is not the strong, warrior option, but the giving in.
i am not giving in. i am working with my body. i am listening to my body. and i am listening to my needs. my doctors explained that the chemotherapy i was on would likely purchase me time. not quality. my quality of life is not, and would never be, improving as a result of any current chemotherapy treatment they have available. and for me? time is not my priority. for some people, it is. for some people, time is what they would prioritising over any other needs. for me, it is quality of life, and comfort. i have no desire to drag myself through this. these endless bleeds, the slowly increasing pain, the exhaustion.
my anxiety, while waiting to find out where i am going, and when, has been completely unbearable. i spent two days feeling as though someone had a vice around my neck, and i was constantly choking when i breathed out, as though the pressure was compressing my ability to breathe. it’s not cancer. it is, entirely, my own intense anxiety at the waiting, the hospital room just hovering here and me in it, and no real idea of when or how i would ever leave it. this ties back to my funding email. gasping. gasping, and gasping, and my own anxiety around how few staff they have for me to ask for help. it’s not an anxiety i am used to, though, so i think i need to navigate its own strange language. i do this slowly, like i am right now, from bed.
next week, i will read stories to a tiny human being i love, and will never see grow up. but for the time i have left, i will have the memories of her tiny, serious face looking at me. i will spend time with the people i love most in the world. i will live in the moment with my family, and come to a place where we end up communicating in a way that is loving, and that will leave us all with the memories of people who, no matter what, are family.
i have a lot to look forward to, and life to live, and that life may be very, very limited by the idea of ‘time’ in the long term, but i refuse to let it be limited by quality, or value, just because i’ve withdrawn treatment.
it is hard. i cannot be inundated with people right now, because i need the quiet. i am often confused by the people who i feel drawn to spending time to, that i need to spend time with. it is an interesting thing.
hospice was the harder decision than stopping treatment. treatment was always a slight reluctance on my part, and it was sealed for me when my i realised how much one of the chemo drugs upset my stoma. i’ve had the stoma for some time, but not whilst i’ve been on this particular treatment, and it causes very, very unpleasant bowel symptoms. you know what’s worse than gross bowel symptoms? seeing the direct result of what your actual bowel is doing because it sticks out of your body. it’s confronting, and painful, and there’s nothing you can do about it. i am in a lot of pain, a lot of the time. i am unsure right now, after taking my breakthrough, if i should take some more. i am trying to be better at that as well.
the question for me is too, what is the ‘time’ buying me? i have lived a life of beauty and richness. and i am sad, and i am a bit angry that it has to end now, at 32, thinking about the histories and stories i would have built around me were i not to be dying. but i also know a month or two of this, or three, or five? or whatever?
these are all individual questions for each person to answer. but for me, i am not giving in, or letting the cancer take me passively. i am actively taking control of my treatment goals, stating them with my doctors, and working forward to get where i need to be for this particular, final part of my life.
stoma wise, it’s the only part of my body i’m interested in trying to sort more aggressively, just from a palliative sense. just for the fact that it causes me so much stress. if the ongoing therapy i’m having continues to fail, there’s an Option Two we are looking at. it’s not about time; this one is entirely about comfort, and there’s no comfort in what that goddamn monster of a thing is doing. there are two more procedures, one moderately invasive and one quite invasive that can be done to my portal vein in an attempt to reduce/stop the bleeding. i think there are some significant risks involved, but for me, those risks would by far outweigh the benefits. i am at the point, in all seriousness, where i would be willing to risk dying earlier if it meant i didn’t have to deal with this constant bleeding. i’m not exactly sure of the details, and it’s caught up slightly in the movement into the hospice, and will involve Balancing Things Conversation. a week in hospital? for two weeks not bleeding? can i come to deal with the bleeding better mentally? what exactly, at the end of the day, will i be gaining? conversations.
urgh. my body is nothing but itch right now, due to the morphine i’m taking after the ward has run out of fentanyl. BUT THINK OF THOSE PRETTY PAINTINGS IN THE NEW CANCER BUILDING GUYS! how pretty is it?!!
for me it’s really important to state that everyone’s treatment journey is individual. for me, what i am doing is correct, and right, and when i realised that the decision what what i needed, i felt tremendous relief. it felt sacred. it felt as though i had really been brave in choosing to do something that could be read in so many ways: but that i did it in the way i chose to do it.
and i cannot thank my medical team, and the nursing staff enough for their support. the looks on their faces of relief, of agreement, and also, of affirmation that they too were proud that i had chosen this aspect of my treatment, and that continuing, for me, was not the decision that would be most beneficial to what i want. i am tired guys. i am proud, because i am brave, and i am strong, and i am not giving in. other people who chose to use different pathways at the end stages are also brave, strong and all of those things if those are compatible with their plans, needs, and desires, and it’s so very important to have these options and feel supported in the choices we make by our medical teams. i cannot thank my oncologist and my palliative care team enough, or the nurses who stop by to stroke my hand remind me that making my choices in empowering.
‘end stage’ is about moving into a new place for me. a place where i focus on my needs, my wants and can finally put the details of the medical things behind me. sorting the stoma will help this for me.
(i just hand a half hour nap while writing this. for context? i’ve left the bed once today. i am tired guys).
i move into hospice care on monday. i will live in a room by the lake, with my own courtyard, with a view. i will pick the little things that make me feel at home, and they will come with me. maybe i’ll feel tremendously better once i am in there? maybe i will just feel safe, and ready. but it is the right place for me. it is the right next step for me, and i hope you, my lovely readers, will understand that though it might be sad, it’s also a time of empowerment, strength and of letting go for me to live the final stages of my life as i would like them to be lived.