Farewell Elizabeth

Alex Seton - Eternally Yours, 2016

Alex Seton – Eternally Yours, 2016

Elizabeth died the morning of the 12th of July, surrounded by friends and family.

Which is what we have written on social media, and in newspapers, but I feel that this place deserves a less sanitised farewell. Elizabeth wrote uncensored discussions of cancer, she was honest about what happened with her body, and to just say she died, passed away, etc. feels insincere.

Elizabeth died the morning of the 12th of July, surrounded by friends and family, but below I am going to talk about what that means (feel free to leave it at this).

*Photo courtesy of Alex Seton. The piece is Eternally Yours, a collaboration between Elizabeth (words) and Alex Seton (plinth, skull).*

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that next step

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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.

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nb, could be projecting look of piece into presence of tiny food and excellence of BigSister

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.

 

 

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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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me and my ice chips

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i love this unrelated dorky photo of me and Alex.  

brief update: still in hospital. planning still in place for getting me home. had leg & foot massage which was tremendous. had people i love visit. i ate a huge lump of fruit cake and two cupcakes. my stoma is now so loud you can hear it rooms away.(i write this between closing my eyes and flickers of awake. i am not proof reading, so it’ll ramble.so it’ll probably read a lot like any conversation that anyone unfortunately gets trapped in with me for the present time. 
 
i had severe ankle pain this morning. it seared up my legs, and it took my- self away. it was as though a thick cable had been cut open, and the ends of each wire were on fire. i begged for palliative care. i find it interesting that this is my instinct now. i don’t want to see another scan of my abdomen. i want to sit back. i want the adults to be in charge. i want to – i need to – accept the changes that have happened across my three hospitalisations, they have been long-stays. a week or more. i sometimes get this thing where i wonder if it is just easier to keep me here; that’s garbage, because ‘they’ want a bed taken up with someone who needs it. and that someone is me. and i now choose where i go in the future when things go wrong.
 
right now, it is still oncology. right now, i still take more pleasure than pain rom my life.
 
the varicose veins are starting to appear all over my abdomen now, and i’ve put on a lot – a LOT – of weight from the dex and random eating fixes. it’s a weird thing to see a face in the mirror which is so similar but different; once nurse commented that i must have had nice cheekbones under all the fluid and fat.
 
i had a good day. a busy day of doctors (a Lot) of visitors, of thinking and not thinking. i have plans to do the important things. i am thinking of more important things. i am trying to let things go a lot, and it’s funny but it gets easier. i just dozed mid sentence writing this, waking up an hour later. i dunno, guys. i’m in a good place today, i was in a bad place yesterday, and we take what we get. my doctors remain like anchors, like glowing quiet lights, like metaphor like metaphor.
 
the last week has been a haze: i don’t really know what’s happened or when. my body seems stronger each day. i look at star charts i got with my box of FeelLikeNiceCosmetics. i know my body so well, and i know that, with no malice, there are more things going wrong, creeping away, shuddering in the background. i know that putting what i need, those i love, the things i love first, is vital right now. my body and i. me and my body. it is a strange place i am in, that i went, and i feel as though i am coming back from it.
 
moments. right now, i can still taste banana, nuts and the density of a sweet fruitcake. i can see the odd crumb on me. the constant buzzing of my bed inflation makes me think of the backdrop of some sort of noise gig, which makes me think of going to The Forest for Audiopollen in brisbane (a sound/noise event i used to love in the early 00’s.) and i think about trees, and i think about the teddy bear my social worker bought me, and i think about my medical team and how much i care about them, and i think about you all reading this, and i rub Ultrabalm into my tattoos, watching them glow and loving these parts of my body (thanks as always to Seventh Circle Studio & Manners Tattoo which are the ones that always get the comments), and claiming them, claiming these pieces of self.
 
i want to give things to people. it’s hard to resist the urge to do this, constantly, but i don’t know what STUFF means now. i look at cute clothes and i see myself wearing it once. stuff crumbles. my body crumbles. all that matters are the things that we hold with each other, between each other. tell the people you love that you love them, even when the words feel like you will fall from a cliff from the fear of using these words and this language.
 
i use this stuff that smells like a forest before i change the bag at the moment. i use pain killers properly (ie, i hurt a bit. i identify this. i call. i get a pain killer. i stop hurting). i am trying to not fear them, think they will hurt me. i am trying to remember that the thinking that matters is those moments when you are grateful for ice chips in an ER, and grateful for each moment you’ve had. because i am so tired of the anger. it’s hard to be angry so much, and on good days, i feel like i can breathe out the anger, breathe in the gratitude, and cycle over this. gratitude for this extraordinarily normal life i have lived.
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hospital. again. pain.

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.

the new chemo was super super easy to cope with, which is good – no side effects i’ve noticed, but obviously bloods need to be kept an eye on. one hour, once a month. that’s all i have to deal with now for chemo, imagine that. and six extra tablets, but eh, i’ve been on them off and on for ages.
 
quality of life. i am thinking of late night mandarins and icey poles and the people who love me and ways of feeling alive. most days i am ok and good at that and it is also ok to have days when i am not. i think it’s important i make that clear. and this isn’t about the gross or the abject, this is just the mental part. the staring into where i am going.
 
i am not ashamed of rejecting ‘fighting’ and i also support those who choose it as a way of moving forward. journey though, i use now. i talk about lobster rolls and holidays and art with my oncologist. i talk about my plans with my palliative care team. i am moving away from Y J now, and to my new team, because that is where i am, and that is heartbreaking and hard and ok and i am allowed to be upset. i’m not very angry right now about it.
and i wasn’t even admitted for cancer stuff. no one is sure what happened but i had the most acute pain of my lifetime in my knees, legs, thighs, to the point where i can’t even remember what the pain felt like, or what happened for the hours before they controlled it with morphine. so i’ve been on subcutaneous morphine for a week now.

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.

 

 

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a week. hospitals. tiny needles. too many tiny needles.

i can’t even clearly remember when i last updated.

though firstly welcome to new readers. there are a lot of you.  here are some basic things:

i talk a lot about gross stuff, but try and warn for it.

i do not post comments messaged to  me relating to alternative treatments. i have written in the past about about my reasons, and i respect all cancer patients and their own decisions regarding treatment. in return, i like to be afforded the respect of not being offered treatment options for my cancer that are not being suggested or managed by my carefully chosen multiple disciplinary team who, between all of them, have a tremendous amount of experience.  i follow this path, i am happy with my decision to do so.  i like to make people aware of this so they understand that this is an important thing for me. i appreciate and understand that it comes from a good place, but unless someone’s seen all my PET, CT, MRI, ultrasound, and blood test results for the last 24 months, and dedicated their life to specific areas of medicine that treat, manage and cure illnesses located in the areas of my body that are compromised, and have spend a significant amount of time discussing my needs, wants, options, and plans with me, i honestly do not have the mental or emotional desire to have this as a part of my life.

this is a personal space for me.  i do not argue or enter into heated discussions in the comments, not because i think arguing and discussing aren’t vitally important, but because this is my blog space, and i started it as a tiny, never read collection of entries about how i like balcony gardening.  you like the battle metaphor?  that’s fantastic! you support aggressive treatment paths for all individuals? GREAT! you do you! my blog comment area isn’t going to be your place to process your feelings about these issues though. similar to what i say above.

i use this to process my feelings. i hope that it assists others, especially other cancer patients, carers, and those close to people with cancer, to understand a little bit better.

 

 

we got back from tasmania, and i arrived home, tired (understandable?). then, i got a bit confused. a bit disoriented. not sure exactly what was going on. vague. i fuzzily suggested the ER, and got an ambulance there, to discover a red blood count of 50 (under 90 requires a transfusion).

so, short stay. solve blood count. home. i was so tired. i was so so tired. it did end up ok. i am so fuzzy about it all though i’m not even sure what happened for several days. i had my computer here, i didn’t use it. i didn’t just sleep, i had some visitors but not heaps — it’s been a sort of willingly solitary stay — and my body tried to recover. the stoma. we did a CT scan, and confirmed i have portal vein hypertension, and it appears that there’s something weird in the bile ducts.  cancer? just getting fucked up? no one really knows.  we could probably find out? is it worth it to do it, for the invasiveness of the testing at this stage of my cancer? to me, probs not.

but, the portal vein hypertension issue confirmed – we now know for certain that the bleeds are essentially being caused by varicose veins in and around my stoma.  this is a very unusual and not often documented side effect of portal vein hypertension.  it’s treated in the same way varicose veins are. only those veins are a few cm in, on the stomach/pelvic area. sclerotherapy, i am pretty sure it’s called. not uncommon.

the first go, we did one vein, and the doctor explained we’d likely need to do quite a few more to get the bleeds under control. it hurt. i was in, i was out, and went back to the ward. that night, no bleeding. nothing. none. i was so excited. WE FIXED IT.  Onc suggested we wait – that he’d prefer me in hospital at least overnight, with a bed booked so i didn’t need an ER admission – while he was interstate.  and then, last night, in ten minutes my stoma bag filled with blood again.

i was thrown. today was hard. today was really hard.  i comfort ate an entire small fruit cake after the bleed, in the middle of the night.  i am tired, and still wired. and i spent the day well – i felt ok for visitors, the social worker told me i coped really well with a hard situation and so did my clinical nurse, and i’ve got appointments to see about three other med teams while i’m in here just to get everything in order. this is because my team are amazing.

then though, at about 4 this afternoon, i had a doctor i’d seen once before come rushing in, saying i needed an emergency angiogram.  i was baffled and terrified, and had no idea what was even going on.  this was an ultrasound procedure.  angiograms are one of my least favourite things. they hurt for days, they scare me for no rational reason, and the last one i had lead to a treatment that failed much faster than i sure as hell had hoped.  i was also halfway through changing my colostomy bag, just after a severe IBS episode, so had me and a nurse struggling with bags and poo and emergency bleed supplies, and i was told i needed to leave, now, for an emergency.

’emergency’ just means they triaged me high on the list; something suddenly horrific hadn’t just shown up.  it was ok. but god. it was not well placed, and it was not worded well. i insisted the doctors called my nurse, which they didn’t – by some weird chance i ran into her and it was ok, but i very much dislike people ignoring me when i say ‘please leave messages with my medical team, i am on palliative treatment and am, despite how i look, terminally ill and facing liver failure. they need to know things’ – i am polite, and clear, and simply say ‘i’ve had my team for 24 months, and their strong preference is to be informed of this sort of information even if it is just leaving a message on a phone.’ i do not like that being ignored, and my doctors like it even less. i have never had it happen twice from the same junior/reg doctor. and i don’t want to shit on them – they are amazing, passionate, and fantastic people, ‘baby doctors’ – i’ve had some incredible baby doctors in my time, often ones i’ve told extensively how positive my experience has been and passed up the line of command so that others knew too. but sometimes? i’ve had issues with them listening to me when it comes to details of my cancer after a five minute interview where they don’t recognise the names of multiple treatments i’ve had – which is hard. i know, without a shadow of a doubt, that i know more about my cancer than an early career doctor i just met does. a good early career doctor judges that within seconds, gets a senior doctor, reads my notes again, and contacts my onc.  a … maybe one who is a bit less well suited to some forms of medicine…. will look at me like i’m a bit of an idiot, and ignore me. anyway.
the sclerotherapy hurts.  it hurts badly. i take strong pain killers. i was on intravenous pain killers during the procedure.  they gave me more throughout, to the point i had trouble walking after. but inserting the locals into that area – about 20 or so – was some of the most intense, hard to describe pain i’ve had. i’ve never actually gone from no pain to barely being able to say ‘8’ (pain scale 8 out of 10) in a matter of seconds before.  the doctor performing it was amazing, and he told me how well i was going, and there was a nurse who stood at my head, gently stroking my head and talking about all her and her kids pets.  as soon as we started speaking i could manage the pain better. she told me about their cat named buttercup.  she just talked at me about animals, about my hobbies, about nice places we’d eaten, about how we love the smell of Aesop products, me through an oxygen mask mumbling to the point i’m not sure anyone could hear me through, and her just clear, calm, and consistent. ‘Keep talking’, the doctor would tell me, tell her.

they had to x-ray repeatedly to try and find more veins, and i’ve never had trouble holding my breath before, but it was a struggle.

i don’t know why this was so hard. i am normally better at pain management. i am normally better at all of this. the stoma thing has just thrown me so much.  i shook throughout, and had an anxiety attack through the pain killers. none of this is like me at all. i was gasping under the oxygen mask. my hands gripped the edges of the arm rests, and i shivered, and shivered.

i am actually interested to unpack exactly what about this threw me so badly. it was out of character.  i managed two major surgeries better than i dealt with a minor day procedure. it’s not even that i’m upset at myself for being like this – sometimes we react in weird ways – i am just actively interested to know why it is that i did.  maybe it’s the IBS, the general bowel feels, and my sense of strange blame that the whole reason i have issues with my stoma is my own fault, no matter what anyone tells me (more unpacking!).

so now i  am tired. and wired. and bloated. i am scared of going to sleep in case my bag fills with anything.  the whole stomarama means that i’m generally struggling with all things stoma related, which given that i need to deal with it several times a day, is a pretty all round shit thing. i’m scared of it. i’m scared of the bleeding, of the clotting, of it not clotting.  my onc said that, with my liver, there’s going to come a point where the possibility of it not clotting will become a real and present reality.

i am trying to be ok with this.  it’s almost a week in hospital, but i feel disoriented by it. the stoma Thing has impacted so severely on my quality of life, so much of the time. i hate it. i hate it.

i am planning a treat for myself. alex needs a break. a proper break. a break which is not ‘i am in hospital’.  so i’m making up my own hospice plan:  Luxury Hospice. cause i’m not at a point of requiring hospice care, but i can’t really go interstate. i feel like i’m safer here; oncology team. bowel surgery team. palliative care team. community nurses.  but you know what i can do? go to a nice hotel. stay there. have Luxury, and eat delicious foods, and wear a fluffy bathrobe, and just enjoy being somewhere swanky. i love hotel rooms; their strange anonymity and intimacy, the odd ways of personalising something that is in its nature needing to be rather impersonal.  i would, during those days, use these services, not alex, for emotional and physical support at night, and at the times where hospices would be caring for me, and not my carer – i don’t require mobility aids at the moment, or a lot of things that many people with late stage cancer do.  i want to enjoy that. my pal care team LOVE this idea and want to help me organise it.  medical team think it sounds like a fun idea as well.

i have it down to two hotels by location: Hotel Hotel, or The Hotel Realm, though Hotel Hotel is near/in the same complex as a cinema. both have multiple food places, Realm has a High Tea spot i would love to take my friend Fi to though.  but we could just uber there?

i also need to organise another Jamala Lodge thing because the last one made me so deliriously happy. i still don’t know why.

right now, there’s a beeping machine going off in the room, and it’s half past 12, and i should go to sleep.

i have been in some media things too, mostly talking about not being a hero (you can be one! i am just not one), or being brave, strong, or engaging in a battle (all things that you also can do! i just don’t).

it is also national Palliative Care Week. i will try and get out a good post on palliative care tomorrow or soonish; it is something i feel strongly about, and would like to advocate for a lot more. Palliative Care is your friend, folks. you live longer, better, happier lives when you have a team that can focus on making sure your treatment is about your quality of life, living your life, and helping you focus on your priorities.  it’s a scary word, especially when you’re under 40, but it’s powerful, and it’s a service there for us as well – and not just a service, but a whole methodology – a way of thinking about how we manage our illnesses and help those around us to understand our illnesses too.

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and for lo, it goes on – stomarama

the stoma seems to settle for a bit, and then just flair up again.  i’m getting a better handle on it, but i had a bleed in the middle of the night. i didn’t need to go to the ER, but it took out a few hours to make sure it was ok, and i called out the night time community nurses to help me in case i couldn’t get it to clot on my own with pressure. my stoma itself keeps swelling, so i keep needing to change the sorts of bags i have – there’s now about 10 boxes of bags just sitting around i need to return, or do something with, because if the stoma is too big for the hole in my bag, i risk knocking the edge, causing more bleeding, and starting the cycle again. my stoma nurse admits that this isn’t a problem she’s encountered, because most people get them after the cancer’s resolved or being, not when the cancer is essentially ripping the body to pieces. sinking boat, sinking boat. we are plugging up the gaps. the water keeps coming in. all we can do is try and slow the sink, make it easy, make the last gasps of air between everything else. right now, for no rational reason that i can think of, the fucking air isn’t draining from my stoma bag. it’s filling up like a goddamn hot air balloon, meaning i need to fiddle with it and risk a bleed, and you know, i just. i just don’t even. i feel resigned, tired, frustrated, and so completely over it.

the output looks jaundiced and ill. somehow, i don’t. maybe it’s just my excessively full of carbs diet, or my otherwise … god knows what’s happening in my body happening. i don’t particularly feel like more CT scans just to be told ‘well, bad shit’s happening’ or ‘it’s hard to tell what’s happening’  or ‘well, the bloods are doing this so we’re not sure it matters what’s happening because the liver is dense and weird anyhow’ because it’s fairly clear that bad shit is happening. and more scans means more appointments means more needles means more checking. maybe there’s a drain they can put in for an errant lymph node. maybe we can just hold it all off for a bit. maybe i can just try and have some nice days where i do nice things like get that soda i like.

the medications they’ve put me on now to help with the stomarama have been a strange mixed bag. i think the steroids have helped my mood. i know the beta blockers – to slow the bleeding – have done incredible things for background anxiety, and already lowered my heart rate.  i’m still not on blood thinners, which is both nice (no needles) and anxiety provoking (what if i get a clot??!?!?!). i start chemo tablets again on wednesday. the lack of anxiety has, in a lot of ways, slowed a lot of my sense of urgency about everything, and i’m not sure how to process that – is this good, is this bad?  the bloods should indicate if i should go back on the clexane. i guess. what’s going to kill me faster? what’s winning here? Quality. Of. Life.

quality of life is such a key, and strange term. i struggle to know what quality consists of. is it me feeling like i can deal with this? is it my capacity to be able to wake up each day and see the value and the richness?  last night, in the middle of the awful, i reminded myself that, were i not going through this, my life wouldn’t actually be some perfect paradise. that sans cancer, everything in my life wouldn’t be MAGIC and GOOD. we’d still have to do the dishes, and i’d still get depression sometimes, and my partner would still go through things, and every night would not be some amazing joy filled orgy of adventure and thrills. it’s a simple thing to forget. it is also something i wonder if i do to try and minimise what is going on, in order to give myself more guilt about ‘how it could be worse’.  that perspective is fairly useless, and i know that. i guess we move it around as we need to, in order to cope and understand what we need from ourselves.  the cats are grooming each other’s faces and they are sitting on my feet, being emotionally supportive of me.  i am thinking about this, about eating pasta bake, about reading my book tonight, about going to tasmania, about things in my life with value and goodness. i do not want to just sit here thinking about the fact that my bag isn’t deflating like it is supposed to be.  quality of life,  quality of life. definitions change.

i find myself less patient at the moment, perhaps more than i have ever been. i pride myself on trying to be a patient and kind individual, but something snapped in my head about my ability to just take stuff. it is liberating.

it seems, in the course of writing this, taking a break, and wandering around, the bag is settling. quality of life.

when i was watching Grand Designs, they mentioned the guy building the house in it was 50. i got suddenly for a moment exceptionally jealous that he got to be fifty.

right now, i just want to make plans to go to tasmania and to go back to the zoo again for another zoo sleepover night where i get to stay next to a big animal and watch them sleep, or at least know they are there, and see them eat treats.  i get to make plans once we’ve talked to my surgeon tomorrow, and i get to think, then, about being alive in June.

we’re ordering my stoma supplies for June next.  so, you know. optimistic.

 

 

 

 

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