excellent results, surgery dates, and hospitals-smell-weird

so, it’s been a week or so of unusually good news, as those of you following at home on twitter/facebook will know.

my PET scan (the big radioactive one) showed a ‘very good, but incomplete’ response to chemotherapy. that’s the official medical terminology. essentially, the result was so good that my medical oncologist enthusiastically called my radiation oncologist as soon as the results were through, telling her that she NEEDED to look at my PET results straight away. there’s no evidence of cancer in my lungs, my pelvic area has a tiny spot where the primary tumour is, there’s no evidence of lymph nodes being affected, and my liver is far better. it’s still bad – but it’s no longer very, very, very bad. i responded unusually well to the chemo, and now the results are in, confirming this. my oncologist is extremely reserved. we often joke that his pants would be on fire, and he would calmly say, ‘well, better drop and roll.’ to know he was excited by my results? it is exceptionally good. my liver surgeon is also pleased, and has downgraded his description of my surgery from ‘Very Risky’, to the far more manageable ‘this is major, major surgery, elizabeth.’

the liver surgery date is set – the 27th of March. i’ve had my pre-admissions tests done – for antibiotic resistant staff, baseline bloods, heart functions – all that sort of stuff. i got a little booklet about ‘what to expect when you’re in intensive care’, with pictures of happy medical staff surrounding a bed linked up to piles of equipment. i spent all of tuesday in the hospital with my long-suffering partner, getting a CT scan before the pre-admissions clinic. the CT scan was unusually painful – the iodine felt like fire running up the vein (or artery? i don’t know what the contrast goes into) in my arm, leading to my shoulder. i winced while it went in, and couldn’t move because i was being shuffled backwards and forwards under the big cream arch. the angle i was at meant i could look at the guts of the CT machine. lots of jutting out bits of metal, and strange cords. it was soothing to see it, this almighty piece of diagnostic equipment, looking somehow vulnerable.

the CT is finalising the location of my tumours, and the exact number, to make the surgery planning easier. as it stands, one of two things will happen when Dr McLiver operates. in a best case scenario, he will be able to perform the resection in one go. that is what will happen if i have a sufficient amount of unaffected liver to leave behind. in the not-so-good case scenario, there will not be enough liver in there, and he’ll need to do a procedure known as an ALPPS. it is complicated, and if you are interested you can read up on it. it essentially means, for me, that i will probably be intubated for a week, on life support, while kept semi conscious and i’ll be scanned every second day. part of the liver is removed; enough to trigger the remainder to regrow – from there, the cancerous part of the remainder is then removed. he’s also planning to ablate any small bits of cancer that are in my left lobe – he is sure they are there, while no one else is. i hope he is wrong. i also think he hopes he is wrong.

the risk he gave me was only 2-4% mortality this time, though he clarified that it was much lower for me, due to the fact this sort of surgery is usually performed on much older people. my health – which has become far more robust after dramatically reducing the amount of cancer in me – is on my side, as is my age. the other risks are bleeding, infection, and liver failure. he emphasised that i was a rare case, as normally the rule is – don’t resect after 6 chemo cycles. i had 12, and my liver has held up well. as he said though, this is it. this is my chance at getting on top of this. he said he cannot promise me that i will live longer as a result of this surgery, but he thinks i will. and he knows far more about this than i do. he said, outright, that this is the best option i have. i trust him.

due to all this, most of tuesday was spent in the hospital. my surgery is (blessedly) being done with me as a public patient. this makes life enormously easier for me, as the costs of surgery, operating rooms, other doctors, and so on, is very high as a private patient, and it’s likely some of the doctors would be charging a gap. as it is, i pay nothing. the public part of the hospital (prince of wales) is not as nicely painted, and the art’s not as good, but the staff are going to be just as good. as a side note: there was a big poster asking for people to donate to help fund the new ER. this horrifies and upset me, for a lot of reasons. but i pretty much wanted to rage-quit all of this after waiting in the CT room for an hour and a half, with ragingly bad IBS and almost a litre of contrast to drink. the CT technician was amazingly kind, and i got all teary after that. and worse, while waiting to have the pre-admission screening tests. there was a sign which stands as the most useless hospital sign i’ve ever seen. it said ‘worried about blood clots? you are 4 times more likely to get one while flying, and 100 times more likely to get one in hospital’. so, essentially, if you’re worried about blood clots? well, dude, you should be.

thanks.

maybe address it to people who aren’t worried about blood clots. your sign did not reassure me or assist me in being Alert But Not Alarmed.

today, though i had a presentation at work after my radiation. this was a big thing for me – i was adamant that i would do the presentation, despite the cancer, despite everything. i was lucky enough to travel to Boston last year for an internship at MIT. it was in March – just on the cusp of the nausea becoming unbearable. it was an amazing trip – the people who hosted me showed me such amazing generosity, and i learned a tremendous amount about digital archiving and preservation. i only did a short talk – around 10 minutes – and it went, by all accounts – quite well. i was happy with it. surprisingly, i had absolutely no pre-presentation anxiety. i think i’ve used up every ounce of anxiety on cancer, and there’s nothing really left. and, talking in front of 80 people is a great deal easier than getting a PET scan, or waiting for possibly terrible results. i wasn’t horribly anxious that everything i would write would be terrible – which freed me to write what i said easily, and quickly. i had to apologise that i made little to no eye contact during my talk – i normally aim to mostly look up while doing a presentation, but this time, i just knew i didn’t have the memory to memorise what i’d written. but i did it, you know? i got up there, and i did it. ten minutes, no pictures, nothing fancy and my subject area was nowhere near as interesting to talk about as the other presenter, who is an exceptionally good public speaker. but i did it.

i am currently exhausted from radiation, and i need to finish some writing soon. i’ve learned a lot from the process of one piece being edited – mostly about removing needless words (very, extremely, really) to sharpen up pieces. i’m working a bit on making my blogging a little bit tighter, but to be honest, i mostly churn these out in about 15-30 minutes, and i don’t revise them. it’s also helping me to quit my two worst writing habits – using dashes – like i just did here – (also, putting things in parentheses all the time (you don’t need to do it as much as i do)). commas do the job of a dash, much better. or a new sentence. and if it’s in parentheses, does it need to be there? if it does, maybe put it into a sentence.

still. baby-writer. i’m hoping i get a lot done during my five week treatment break. i am so extremely excited about this. five weeks with no chemo and no radiation. this is the first time in 8 months that i’ll be off intensive treatment. i might end up just lazing about, which is also ok. i guess i need to give myself permission to NOT do stuff.

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About elizabeth

various things.
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5 Responses to excellent results, surgery dates, and hospitals-smell-weird

  1. greenspace01 says:

    I leap to the defence of parentheses and dashes; they add texture, pacing, and emphasis to sentences, in the same way that forte and piano and rests add dynamic range and texture to a piece of music.

    • veritas says:

      see, i like them, but i wonder why i use them. i wonder if i could achieve what i am trying to say without them, in a neater sort of fashion. i think for me it’s a case of overuse. you don’t want your music to be all forte.

  2. Lisa says:

    “he emphasised that i was a rare case”. i knew that all along elizabeth, thats why we all love ya. xxx

  3. katiedavis says:

    this post is full of all the best news I’ve heard all year.

    I’m petrified about sending my thesis to an editor because of my idiosyncratic writing habits. Some things aren’t technically ‘right’ but they’re the way I like them.

    Also, I’d love you to share tips for smashing out a blog post fast. I’m so slooooow.

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