home stays and steps, and hospital funding

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a photo from my party that i love very much

and i mean physical steps.  we have a lot of steps leading into our apartment, and no lift, and our day to day living space is upstairs, meaning more steps to get up to my bookshelves and large couch.

i got up them. it wasn’t easy or comfortable or pleasant, and i cried when i saw them, and i did it. it’s just my fitness levels had dropped so much, it was harder.  i also realised that scooting around with  my little frame is way, way easier than walking with a cane. so scooting will be a Thing. which will mean more ways of adapting to getting out of the apartment with other people.  but i’m hoping that time should help – the physio is confident that with a bit of time, i should find it easier.

at the moment, i’m technically still in hospital, but i’m on ‘gate leave’ for the weekend – my space in the shared room is kept for me if i need to come back in to save an ER visit, and i have that added security for the first two nights of being at home. so tonight i sleep at home, then i return in the afternoon to get my wound next to  my stoma changed, go home again for sleeping, and then on monday, we go through proper discharging and preparing me for returning to living outside those tiny white and blue curtained walls again.

i have to set up my life now, too; with more appointments from more medical teams, and for me to use the resources i have available to me more effectively.  there are many of them here – the ACT is exceptional like that – it is about me finding out those services and using them more effectively than i have been. the small things like managing bills. the bigger things like managing my anxiety.

i’m going to write in more detail for Palliverse (which is a palliative care blog i love, and contribute to) about some of the changes i’ve been making in my treatment path, and decisions i’ve made about my care, and how as a patient the effect me  – just because that content lot more about the medical side of stuff – i do always recommend having a look at the work they do to learn about palliative care, and the different ways that people with life limiting and terminal illnesses can choose to make decisions about care and treatment, and the personal and professional cross overs.  as i’ve mentioned before, palliative care and management of medical conditions – and it’s definitely NOT just for cancer – is very important to me, and with a lot of discussions that happen around end of life care management, i fear are misrepresented or under represented. if it’s something you’re interested in looking at, or understanding more for yourself, your family or friends who may have life limiting conditions, or just in general, it’s a great blog to start with.

i still can barely piece the last two weeks together that i spent as an inpatient. i’m finding the higher doses of pain killers both challenging, but extremely important for actually managing what’s happening – pain and discomfort (which i still sort of feed out differently in a way that’s complicated and hard to explain) in my body. i know i’ve been in hospital, and i can vaguely tell you what happened, but i have no sense of the time between events, the time things have happened.

my position in the ward was right next to the nurses station, making it noisy. very, very noisy. relentlessly noisy. this wasn’t the fault of the nurses, just the fact that this is how a hospital operates. but my sleep’s been shattered, and that’s not helped my mood or my ability to really understand what’s been happening clearly very well.  i had days of wanting to cease treatment. days of just… just faded out haze, of falling asleep while checking my phone halfheartedly. i looked at photographs on instagram a lot. i ate. and i ate.

eating has become a … thing. i’m far more self conscious about the Steroid Face than i thought i would be, and i feel uncomfortable with myself for these feelings being so strong.  i wasn’t expecting the changes to be so fast, or so visible, and i wasn’t expecting the hunger to continue. combined with complete inactivity, i look very, very different to how i have looked before when i see myself in the mirror and i’m adapting to it.

breathing is also… a tightness in me that i am not familiar with.

one of the things that i’ll be going into more in my other post is my own control issues though, now. i am stopping the speculating.  i spend a lot of time on it. ‘is this liver mets hurting? muscles? i should tell my doctors i think my clotting factors are failing’.  this isn’t helping me. it is also a very, very hard habit to break.  what i need to focus on is moments, and pleasure, and finding what it is, and how it is that i want to spend these days, these weeks, these months.

it is June. it’s June. i had them make sure to write up the day and month every day in hospital on the wall, otherwise i got too confused, and now we’ve flipped through to winter. i … i honestly didn’t think i’d see winter. i didn’t think i would see the next series of Orange is the New Black.  i never thought i’d stare into the park and look at the leafless trees next to the pine trees, that view i love so much, from our apartment i love so much. and it is June, and i am here, breathing still, though coughing on the couch (i have been in a bed for two weeks, come on, no, stop it).

and now, i focus on what brings me joy. what is it that i can do here, in canberra, within the limitations of my body which are slowly creeping in?  i love presents. i love buying and giving presents.  i love fancy hotels, and fancy food. and i can still eat and still gain pleasure from food.  i love the zoo, and i loved my Jamala lodge experience (the Zoo Thing i did). i love animal photos. i love my friends.

a part of this too is accepting the things i can’t do anymore without the cost being greater than the gains. my daily visits to coffee shops – it’s small, and lovely, and today i had a pie at my current local daily stop-off (it was also Sunday and they get extra treats on Sunday, and they make the BEST pound cake you could possibly dream of). what do i DO with this time? what do i do with the means to be able to get more things done (by which i mean the insurance pay out i got, which has given me a freedom which i am trying to do my best to use without feeling too guilty).  i like going on long drives in quiet times.

i’ll never look at the sky out of a plane again. i thought about that, and i cried, and then i didn’t feel like i needed to cry about it again. you know how many times i’ve looked out the window of a plane? what a glorious thing. what a glorious, glorious thing to have seen.  i am so lucky.

i also focus on what i need. i need sleep. i need time alone to process. i need to write, but i also need to do it on my terms, if that makes sense?  i’ve got things i want to say, and i am not sure of how ‘platforms’ work, but there’s things i want to get out there.  how do i do this while focussing on what my needs are though? because that is something i struggle with.  i write this blog because i enjoy it, and because it gives me a place to calm down. it’s a part of my own therapy. i wonder if it would operate as a book, a solid thing, a tome – the editing would be hard, because it is, by its nature – ‘bloggy’ – because that is how i write, and how i’ve written since i was 15.  i mean, it’s coming up to 20 years of me blogging off and on, in one form or another.  a physical item works differently. but i like physicality – it’s why i enjoy being published in journals, (as well as the fact i like validation. come on. we all like validation). but what are the things i want to say? i have a lot of things.

the care i have had through my medical experience is beyond the expectations of anything i could have imagined i would get as a patient. i do not mention my doctor’s names because i know (well, i sure did) that the first thing you do is GOOGLE, and i know that i often share small moments i have with my doctors that add to the personal as well as the professional relationship, and it’s a part of what makes me feel guarded about it.  but at the end of the process, as i move along, i will be mentioning names, i will be saying how these people are the only, the ONLY reason i am alive, and how i don’t just owe my life to them, i owe quality, understanding, empowerment, my mental health, and so so so much more.

the medical system in the ACT – particularly the way the budgeting of the cancer care facilities has been set up – has been one of the hardest things for me to be seeing this year.

EXAMPLES:

my treatment has been at The Canberra Hospital, overwhelmingly as an outpatient through the Canberra Regional Cancer Centre. the facilities at this centre are astonishingly good, and brand new.  the artwork that you stare at during chemo is stunning. it smell like a hotel foyer, and looks like one as well. however, the third level never got finished being built because they ran out of money. there’s just one abandoned level.

i have been in the cancer ward  in the main building which is entirely separate from the outpatient facilities for over three weeks over the last six months.  the lino is creeping off the floor wall in gaps, and it feels shabby and forgotten, as though the people dying of cancer are here, shoved up the back, while those who will more likely live through, or live with cancer have a glistening white resort. this is not to deride the difficulty of what people who do not end up in a hospital often – it’s a very different space. but i can tell you right now, the times where i have been in the far darker places have been in a ward late at night.

emotional-buzzer support teddy become necessary – a teddy bear i kept with me (and no, i’m not ashamed of that) – which i found was the only way that keeping the nurses buzzer both within reach and from randomly falling out of the wall due to poor wiring, or from just randomly starting to beep without me touching it. the paint peels off the wall. there are never, ever enough staff; the ones that are there do an amazing job with the resources they have, and i never once felt neglected in my care – at times, often not triaged high up, but that was due to the nature of why i ended up in hospital in the first place, and the nature of what was keeping me there – i wasn’t a high triage need, and the biggest issue ended up being the medication mix, and also i think, to a degree, my own  mental place with where i am in my treatment and my illness, my body and my death.

i had a pin board. i put images on it of a lion and a tiger and a bear from the Canberra Zoo, and a photo of Alex holding Pounce (one of the cats), and a star chart out of a box of fancy cosmetics that Aesop put out – i bought myself a big collection of nice smelling skin care so i could feel more human during the time i was in there, even if some nights i couldn’t get out of bed to wash my face properly. i might look like the moon but damn, my skin is in great condition.  i had one broken chair for visitors; the arm of it kept falling off – and no place for me to sit during the day other than the bed.

the rooms are almost all shared – there are a few private rooms, up the end, and they are the rooms we speak about quietly, with sitting areas outside, and couches next to the bed, and lower lighting.  they are away from everything else, and they are kept clear, and that is the only way those rooms should be. but they are still in the noise.  the spaces are tiny and from a physical sense of moving within them, between those endless seeming blue curtains, very difficult to navigate. there is nothing that even resembles privacy, as you try and find the right supine angle to balance the shit pouring out of your colostomy bag, the smell filling the room, three other people quietly holding their breath as much as they can at two am while you try not to cry at what your life is, my 32 year old existence where i get genuinely excited when i manage to remove a towel without blood from it, or manage a bag change without smearing my own shit onto my arm.

i love beautiful artwork, and i love the fact my outpatient cancer experiences have been enhanced so much by the new and excellent facilities available. i love it very much.  you know what i love more? the capacity to know my nurses buzzer is going to work reliably at three AM in the morning when i am in a huge amount of pain, rather than having to crawl out of bed, with wobbling knees, a hand pulling the gown around my arse more securely and my stomach bent over, tears running down my face asking for breakthrough pain medication.  or a third level that had something actually on it.

it is good to be home. it is really, really good. it is also always really, really scary at first to get used to the changes that being in an old space, faced with a new context. i will adapt, and i know i’ll find a way to navigate all of this again.  right now, i am enjoying the couch. i am hoping the pain in my stomach remains below a 4, so i don’t need pain killers. i am looking forward to dinner that’s not off a hospital tray.  i am trying to think about now, and not next week, or that there’s no buzzer to call A Medical Professional instantly, rather my phone to call them. someone is close. i am safe. we are safe.

.

 

 

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About elizabeth

various things.
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4 Responses to home stays and steps, and hospital funding

  1. luxxikins says:

    A real book? That would be so wonderful, inspiring and an amazing and useful legacy, not just for the palliverse but for everyone who has encountered your brilliant writing. A quick crowdfund for publishing would be a certain success, if you needed to – if you feel you don’t have energy to spare for discussions with a publisher …

  2. I like the idea of a book, and I think if you kept it “bloggy” that would just add to the realism and overall appeal. I’ve been blogging since 2001 myself – it’s amazing to realize how much of your life revolves around words written online, huh?

  3. Dani says:

    A while ago I did a little vanity publishing thing from the email newsletter (pre-blog technology, even! Now I’m dating myself) that I kept when I was in Honiara:. I found the Blurb setup really easy to use, and you can get stuff out there without a big outlay to print and a hope and a prayer that you might sell enough to recoup costs. No one but me has ever had copies printed, and that’s ok, and it’s there for people to enjoy or not. I did get a few copies printed to give to friends, and I love picking up my own copy every now and then (like now) and thinking ‘I did this’.

    Your writing is worth way more than a vanity project, but if you are looking for a fairly hassle-free way of getting it underway, I found the Blurb thing to be pretty good.

    And even though I wanted to just say helpful things about self-publishing avenues, I can’t not feel horrified and so, so sad for your experience for want of a working buzzer. It is wrong, wrong wrong, and I want to change it for you. I am so glad you’ve been able to spend some time at home.

  4. Elissa says:

    I wondered how, as an archivist, you archive your blogs.

    Thanks for being such a champion for palliative care xxx

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