so i’ve been admitted and in hospital for another week now.
i’ve been trying to stay sane. it’s not… overly easy. the drug combination has not done great things to me – it’s not even my existing mental illness, but just what can happen – and i’ve been struggling to hold onto a sense of clarity and sensibility, and more to the point, the self awareness i am so used to.
i thought i was manic, until my psychiatrist told me slowly and gently that i am actually suffering from morphine/dex/every bloody other combined drug delusions. it means i have no idea what happened, what’s happening, and when it happened.
i am terrified i made it all up, because i became deeply paranoid that everyone in the hospital hated me. i still get this distinct feeling every single night that they move me to this other PLACE in the hospital. it’s hard to know where i am, so i’m placing orienting objects around the room to try and remind me where i am. i had a team of palliative care doctors around me when the pain hit – they saw it as the same time i did, and gently, on the spot, gently discussed other management techniques because what i was using clearly didn’t work. i took on the opiates that aren’t fentanyl feels hard, started on morphine, and now accept that oral morphine will be what i use.
i have a hard feeling this flat. i don’t feel depressed as such, just strange and tired. i fall asleep at random – just sitting, and then suddenly, gone. i have no idea what to actually do with time — i think about the hours to fill in the day and almost become anxious. i worry some days that i’ve given up now, that my goals to get home, to get better, have ceased to matter. i think right now, today, i have given up to a degree. sitting here, waiting, waiting, waiting to die, as my body falls around me, crumbling.
i had a few stoma bleeds as well. my bloated body – from my hairy steroid face down to my stupid puffy ankles – tore – and there’s this semi-circular wound where the skin pulled back from the stoma, and is now open and needing to be covered. but it’s familiar and solve-able, and the stoma people were totally relaxed about the whole thing. i felt a lot better after that. i still blame myself. i still blame myself for everything.
for a rare time, i question even writing this, and posting it – it’s been a deeply private week of thinking about quiet things, and writing list after list after list of what has been going on. i’ve stopped writing all the lists, which makes me think i am maybe on the road to clarity again. i feel so unclear. everything. unclear. i’ve even gone as far as starting to ask people, reach out to specific people, and ask to see them. it is very very hard for me to do this, because i figure often unless someone ELSE wants to see me, they have no interest in seeing me, and asking them will end in both of us feeling embarrassed. me for imposing, and them for having to see me. but that’s not how it works. and even those tiny visits help. or longer ones.
the lists are telling. i write lists of fears, of dark places, of plans, of goals. i have to set up a little folder that catalogues what to do in cases of medical emergencies, working out what they are. i need to accept that this state of being – this strange hovering understanding that hospital is now somewhere i need, and being here, in a bed, sitting here, giving up that control as much as i can, is going to happen again. i guess it’s up to me how long i push this. how long i care or can do this.
i don’t know if i should think in finite terms because i don’t know what is healthier. i don’t know what i want to do with my time – seriously do – or how to priorities. i have a much stronger psycho-social team now, and i need to work more effectively with them in order to get me into a more solid place.
i am scared of this pain returning. i am so so scared.
out of all of this does come the good news, that my bones are clear of cancer. abdomen, we just… it’s not much point me knowing anymore where is what, we just palliate. but how long? how hard? how sharp? there’s Stuff we can do if the stoma bleeds – the ones caused by the veins rather than the would – but it’s more surger, and questionable as to how well it will work. the doctors look guarded about it, but need to offer it as an option. i don’t think i’ll do it. i think i’ll risk the bleeding out. my body is starting to be flecked with varicose veins. but the pain of bone mets? i’m more likely than not to be free of this, and that makes me feel confident.
my plans – my list of plans – makes me feel safe. if what then when. folders. easy access. step plan. control. control. as someone who has always had weird control issues, the last few months have just sent me into a spiral of needs around controlling situations. it is ok. it is ok.
i miss home, i miss alex, i miss the cats, i miss my life. i miss having a concept that i was living. i am going to sit in the mall and watch people pass me by, and i will see out people and i will use my time do things that matter to me without guilt. i will plan out perfect days, beautiful days, real days. i don’t know what to do with this time. it’s not about ‘wasting it’ as much as doing things i want. what do i want? right now, massages. i’m getting massages.
and i know what i’ve had to do is start to prepare for my life to end now, and i don’t know what that means, or when it is, or what form it takes, and that lack of control is terrifying to me, and also it is important, because this is a place we all will go, and we all need to go, and it is just my time to be doing it, and i just happen to be helped by writing through it which is why it ends up out there, splayed all dirty-like. i envy people who can draw these experiences and thoughts together into a coherent piece, a coherent place, into some sort of Book Like Thing. i started and stopped it because my writing is erratic, it is shivering, it is a series of essays, and i feel probably the least uplifting way of cancer monologuing anyone could do.
a lot of this above is about palliative care, too. which i write about elsewhere, but i feel exceptionally strongly about. i believe in palliate, as soon as you can. i believe in getting in the teams together before you hit a crisis – and i think for me, having read a fair bit about the palliative care things in the ACT (‘what does it look like? where do i go? what are the services? how can they help?’) i sort of prepared myself for when we started getting the team in. it took some time to be ok with the word, which i’ve talked about before. and the concept. and the transition. it is a safe transition though. i have an inpatient team who are making me feel safe, and we don’t talk about dying, as such. this is something i want to emphasise so much – is that it is the part where we are focussed on life. on removing pain, on understanding how i understand the world through what i need right now.
i know the choice to involve palliative care teams – and when you choose to do it – is deeply individual. for me, it is something that has eased a lot of the burden of working through ‘dying’ – i use inverted commas here because it is not a moment, it is a process we all step through, and an awareness that death is near and close and how we manage that in relation to what goals and purpose we have is important.
at the moment, i have three ‘teams’
i have what i call my psycho-social team – which is the three arms of 1. social work (practical needs), 2. psychology (emotional needs) and 3. psychiatry (medical and also emotional needs).
there is then my oncology team – the man the legend my oncologist and my nurse care co-ordinator, and while i’m in hospital, the really great minion doctor who works with my oncologist (i think they are the registrars? i get confused between residents, interns, junior doctors….) who also pops in to see me. he’s young, and also very, very good, and i seeing him in action makes me happy, knowing that there will be patients supported by another oncologist who both has beautiful bedside manner, and a really good grasp on what he’s talking about and an ability to communicate that with a deep sense of humanity. they take care of the oncological side – the cancer killing/moderating/slowing growth side of things, and taking direct action around the cancer, and supporting me through those things. they also work in to make sure i am feeding through to the other two teams, because right now they are as, if not more essential to my wellbeing in the … long term?…. they also know me the best. the nurse care co-ordinator system they have in place here is incredible, and without her, i can’t imagine how much harder this all would have been.
then, we have my palliative care team – two doctors, a nurse, and i Think there’s a separate social worker? i am slightly hazy. there are three people who visit me and talk to me, and they are all wonderful, wonderful, wonderful people who focus on helping me with the pain, with the realities of the changes time will bring to my body, and by simply standing or sitting with me, and being there. it is hard to describe how it operates, or why it is important. it is more than the act of sitting with someone as they die, which i think is what people imagine palliative care to be – it is about an active involvement, an active exchange between patient, medical teams, and life.
i guess that’s what i need. that sense of life back. and you know, it’s funny, but this silly blog post has made me feel better about it all. i actually feel better now after these words are out, which is, i guess, why i started this blog in the first place. it heartens me that you guys who read it get something out of it. i hope it helps you if you have cancer, or a loved one with cancer, or even just want to learn more about what it is to have a different sort of experience in waters you are yet to have to chart. because we all come here, by some boat or another.