today’s WARNING: surgery – lots on surgery. poo related stuff – quite graphic. and some rather intense stuff relating to stomas. (it’s a rectum). it will be detailed. as always, if these are gross or triggers for you, don’t read on. it is probably one of the more graphic entries about the medical details of what will be happening to me.
SO today was rectal surgeon day. i liked him instantly, which is always good – he was confident and competent, and explained every single thing to be carefully and kindly – and i didn’t once feel like i was getting too much information, or information i couldn’t understand. he had equally good beside manner to Dr Sydney, which is saying something. Dr Sydney is just emotionally more important to me because he is the one most likely to fix the liver problem. it’s always interesting meeting someone who’s cutting you up for the first time. interesting and weird. he said that he felt as though he already knew me, after spending so much time consulting with the other doctors and reading my case file on the Curious Incident of How Did Those Liver Mets Happen Like That. and he had an open face.
he also said something that possibly made me happier than anything else. when mentioning the liver surgery, he said ‘Dr Sydney said he can do it, it’s just difficult surgery and we want the tumours to shrink’. or words to that effect. but there was no ‘maybe’ surgery. there was a definite. the liver surgery can be done. and there was no inclination that he seemed to think that i wouldn’t end up being ok (ish) eventually after it. perhaps surgeons are naturally like that – cocky, confident, and positive. but i also think the know their stuff inside out, and if they thought it was inoperable, (like the first dude did), i would know.
so now i have a clearer timeline for treatment:
The Liver Part.
three rounds chemo (6 weeks)
CT scan to make sure it’s doing something. assuming it is
three rounds chem (6 weeks)
CT scan to see what my liver looks like. assume it looks good.
wait (6 weeks, i think)
recovery (no idea. ages).
The Bowel/Rectum Part
four-six rounds of radiation treatment (i have no idea how often they do it)
wait 6 weeks
bowel/rectal resection & temporary ileostomy
six rounds chemo.
then, if the lung spots haven’t taken care of themselves, they get looked at. with potentially a new friend… a lung surgeon friend. no one’s worried yet. liver first.
There are still a lot of ‘ifs’ here. all centred around the liver, and if i make it through the surgery. i need to be clear that this is a real possibility. i need to trust my doctor’s judgement when he says it is worth the risk. it is the surgery, or death. those are my choices. it’s pretty simple. this gave me confidence.
i will just explain what the ileostomy is, and why i need it. the doctor was amazing, and was so clear in outlining why he was doing everything, and in what order. the ileostomy is a surgical opening in your pelvic area, where they bring your small intestine to the surface, and attach a bag to it to drain the waste. it means that your waste avoids going through your colon. i need one of these post surgery because my rectal cancer is in an area with very little blood flow, and if you are allowing faeces to move through it before it has healed, there are a huge swag of problems – the biggest being a ‘burst’ in the wound. i think it’s quite clear why that is a major issue. so the ileostomy is to stop the waste going into my bowel to give it the best chances of healing.
i was really really scared of having a ‘BAG’. for some weird reason it’s now completely been removed from my list of fears and i give zero shits. bag me up. hell, it’s only temporary. i’m not even sure why i’m not scared – i think speaking to someone who i’ve come to deeply respect as knowing their shit about cancer with a bag, and seeing that it’s actually ok was the first step, and as DUMB as it is, seeing the story of the young woman who was lying on the beach in a bikini with her colostomy and ileostomy bags on show, without shame, showed me how non-threatening they are, and how it will, you know, save my life. it now scares me less than having to receive blood again, or get heparin shots. I HATE HEPARIN SHOTS. that’s the fear thing i am holding onto now. it’s completely insane. i’m going to be pumped the fuck full of blood post liver surgery. i’m also going to be so out of it for a week or so that i won’t know where i am. other than MorphineLand.
i am also exceptionally lucky. the rectal cancer JUST small enough and JUST high enough that i don’t need much more of my rectum, and my anal sphincter removed. in which case, i would have a permanent stoma, in the form of a colostomy bag, and no more bumhole. and strangely enough, if that was the case, right now, fuck it. i would rather be alive with no bumhole than dead with a bumhole intact.
that timeline, that horrible sounding timeline? it makes me feel safe. look at it, all lined up in a row! this is where i go. this is what i do. this is what people will do to me. it will be awful and painful and i will want to give up and i will cry and i will beg for it to be over and i’ll question why i am even bothering with this, just let me die, oh god. i know those reactions will be very likely to come. i’ve already had it fleetingly once.
but i have the ‘post doctor’ good feeling. like, it was a relief to see him outline it, to say there was definitely a point to having the surgery, that the liver surgery is pretty much a given in his mind, and in Dr Sydney’s mind, and that we can work towards getting all this sorted. the oncologist is cautious. their job is caution. i think surgeons are less about caution, and more about action. doctors and specialisations take, and require, such different sorts of people. medicine is starting to fascinate me – how the nurses relate to me – how the different types of nurses respond in such different ways – the ‘senior’ specialist nurses, the oncology nurses with extra qualifications in oncology, nurses who work in oncology, but may not have had that study. how the organ specialists (GI track, liver), and the oncologists, and the surgeons, see the world, and illness, in such completely different ways, it seems. but Bowel Surgeon made me feel safe and confident. and that is damn good. i’m not medically minded. a lot of this is confusing to me. i am more emotive than logical, and i respond a lot to how people respond to me, and how i read them emotionally through facial expressions, body language, tone of voice. that sort of stuff.
in other news i ate real food today. very little of it was solid, but there was protein in my smoothie. my cancer guardian angel, who i met with for coffee yesterday, then ran into in the mall, advised smoothies. i went to Boost. smoothied up. perfection! no chewing! straw means very little taste! it’s all unthreatening!
this timeline means though i will be having a lot more time off work than i first thought. i’m going to have to have a long hard think about how that makes me feel, because even though now, there’s too much happening and i’m struggling to readjust that it’s fine, i wonder when it will start being harder on me emotionally. do i do that thing where i try and fit my pre-cancer life around cancer again? do i try and go back to work part time at some point during this process? or should i just wait, wait, and hope my income protection from my super fund kicks in to help out.
pro-tip! if you have Superannuation, you almost definitely also have income protection! they will drown you in paperwork to try and stop you accessing it, and your workplace might not be too interested in telling you about it…. but it’s there for you. it won’t be your whole pay, or maybe even much of your normal pay, but damn, it’s something, right?