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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About elizabeth

various things.
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18 Responses to hospital. again. pain.

  1. musableblog says:

    I’m glad writing it out is helping you – I won’t say I can understand what you are going through, that would be ridiculous. But I am glad you are able to find some good things around you – the people who are helping you medically really do seem to be so good at what they do. I agree strongly about the value of palliative care; what it did for my father was amazing. I’m sorry this is happening to you. Frankly, it just sucks…but for what it’s worth, I send you love and best wishes from Canada…❤️

  2. Julie says:

    Sending you a hug from NYC. ((()))

  3. Jess says:

    Elizabeth, I have been following along on your blog for a while now, I never comment… Just follow along your journey quietly.
    My cousin is in the final stages of his cancer journey. He is 36. I have been reading your blog since before he was diagnosed. Your words help me understand. Sometimes I even go back to old posts of yours to revisit things you have said.
    I am sorry this happening to you. And to him. And to anyone who walks this path.

    • elizabeth says:

      thanks so much for commenting. i am really, really glad you’ve found my blog helpful: that brings me enormous comfort. and all the best to your cousin.

      it’s a rotten, rotten thing. x

  4. Flib says:

    Oh gosh you need lots of hugs!!
    Your writing is touching and honest and raw. I like the end of this post – about charting unknown waters. It reminds me of my Dad who died of lung cancer too young. We buried him in his pyjamas (his favourite attire) and a copy of Robinson Crusoe (his favourite book). That book is a kind of allegory about being alone in an unknown place so it made sense to send him off with it. He wasn’t ready but didn’t have much time to prepare…
    I’m so pleased you have good teams of people looking after you. I’m so pleased you are writing and speaking (I heard you on the radio) about your experience. People who haven’t experienced health problems / disability need to know.
    Take care
    xxxx

  5. Sarah says:

    Thank you for these beautiful, vulnerable, wise words. Yes, we will all be there – by one boat or another – and I am so touched to read of your experience, and wish you late-night mandarins and icy poles.

  6. Elissa says:

    Thank you for sharing and being generous with your words, as ever. I for one learn a lot from you and I think it makes me a better doctor, and person.

  7. More love and best wishes from Canada!
    Your writing brings tears to my eyes because it is so honest and yet so gentle, even when the realities you write about are brutal. I watched my grandmother go through the palliative care process last month. Of course, there is not much in common between your story and that of a 99-year-old woman who couldn’t have asked for more, but on the other hand the experience of being a person who is dying seems to have some universality. Even at 99 she still wanted to live; to be around for one more visit, one more hug, one more remember-when story. How do we let go when it is almost impossible?

    • elizabeth says:

      for me, i take great happiness in the fact there is ALWAYS more. no matter how much we live, there is always more life we hunger for. it makes me feel less loss, knowing that if my life was double, triple, no matter what, i would still want just one more moment.

      i think the idea of reading every book i ever wanted to read scares me more than the idea of finishing everything i ever wanted done. i saw a tiny person laugh – really laugh – for the first time, last year. it was incredible. i’ll always want that feeling – the moment of seeing an infant not just make a little squeaky sound, but a complete laugh.

  8. Martha says:

    I found your blog recently but read through many posts. My sister passed away somewhat suddenly from acute myeloid leukaemia 2.5 years ago– she was 33. She was a hipster librarian who liked knitting, she was hilarious and spoke eloquently about her experience as a cancer patient. I feel a recognition, and I want to thank you for writing as you do. It’s very meaningful to me to share some of your journey. Thinking of you and thank you from Canada

    • elizabeth says:

      thank you so much for reading, and i am so sorry to hear about your sister. she sounds like someone i would have gotten into a lot of library hijinks with.

  9. Kelly spiers says:

    I’m like that girl above, I’ve followed you for a while and never commented. It feels weird to tell someone I’ve never met that I love them so I’ll just say that I really like you. I like to think of you on a comfy chair in the sunshine with a cat asleep on your feet. I think about you every day and wish that. You are beautiful. You are amazing. Honest, articulate, generous.. I wish I knew you and I wish I could sit with you x

  10. Jess McLean says:

    Such beautiful writing. Thank you. You’ve given so much more than a ‘silly blog post’.

  11. badblood says:

    Liz, one day when I am teaching again, babby med students or health researchers or policy-makers, I will assign your writing here. Wishing you ease.

  12. peter says:

    Whenever a new post goes up, it’s the most important thing for me. I don’t know how to best describe it. I read it carefully, sit with it, take it in and try to understand. The way you write is so good and clear and vital. It feels like a necessary meditation in the best way. I don’t know. I’m not being clear. I know I’m not on this path with you, but listening to what you say about your experience helps me and I’m sure many others think about priorities and time and relationships. You do a good thing and as hard as it is sometimes to read your updates, I still look forward to them always. I don’t like the word “hope”, but I don’t know a better word right now- I do hope for the best for you in whatever form that takes.

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