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.