temperatures, don’t-read-the-news, terror

some medical stuff (blood – a lot of blood because i had a transfusion and i am talking about my feelings about it, urine samples, IV drips, ERs) and some pretty dark stuff as well. (mortality, ‘prognosis’, don’t read the news).
As always, if these things are not things you like reading about, or are problems for you, look away!

i’ve not updated since i was released from hospital. so, in summary:

1. day of release i had a blood pressure drop to 70 over… god, i dunno 40 or something. they were quite baffled as to how i was speaking, let alone conscious. ‘i have low blood pressure’ convinced no one other than My Favourite Intern. i love My Favourite Intern because she has this divine speaking voice, is really calming, and is going to be about the best oncologist ever. i told her she was my favourite. (after she ran out and got me ginger beer to help with the blood pressure drop). in response to this, they pumped me with saline and i felt better. how the hell does saline fix everything? seriously. saline. manna from heaven.

2. red blood count/level/thing (sorry, no idea of technical name) was shitty on day of release. got a bag of blood. it was terrifying. one of the more frightening things that has happened to me as an inpatient. once i got into it, though, it seemed fine, and the terror subsided. just blood. to all you blood donors out there? thank you from the bottom of my heart. 30% of all blood ends up going to cancer patients due to what chemo does to us. a nurse sat with my, talking to me while i was terrified. i don’t know why i was so scared of receiving blood. there’s something incredibly intimate and confronting about it – a bag of blood, from someone else’s body, produced by someone else’s body, flooding into me. it gave me a temperature.

3. this leads to the saga of The Fever. or, Is it an infection? or my liver?
first night home, my fever was high. for context, on chemotherapy, if your fever spikes above 38c you need to get to a hospital, and are triaged as an emergency. i ignored it the first night. the next day, i continued to ignore it, until it got close to 39c at around 6pm. after calling the oncology people, they firmly insisted i go to the ER. normally in this instance you go straight to the oncology ward. i was an idiot, and waited too long. the ER is the worst. more on this later. triaged, taken straight through, put in bed near people screaming in pain, and an elderly couple who had been in a minor car accident. straight away, IV antibiotics go in. saline. panadol. i had a chest x-ray, urine sample, and bloods done almost immediately. there’s a special word for the risk of infection, relating to a low white blood cell count – which makes a minor infection potentially lethal. i have a piece of paper i have to carry with me at all times in case i need to go to hospital and have a fever (and it also lists the drugs i’m on if i go for any other reason). tests implied possible UTI. sent home. i read half of Dragons of Autumn Twilight lying in that bed. it was great.

4. day of continuing fever the next day. sigh. it could take a few days for the antibiotics. tolerated with panadol.

5. doctor’s appointment the next day. fever elevated. urine sample was contaminated. NOTE. when you (obvs it happens to every health conscious individual taking care of themselves that you need your urine screened for stuff at some point) DO NOT take it from the first bit of the stream. wait! midstream! it’s your friend. it’s a bit less palatable, but you’re less likely to contaminate it, like i did. so, i had to back to the hospital – this time straight into the chemotherapy ward. unlike when i walked in as someone who will some day be starting chemo, this was me. being treated. in this room. it was terrifying as well. so, more urine. this time, they had to access the portacath to check for an infection in it. that would have been a complete disaster – and i was terrified of it. so, pulled out blood to culture for two days. as a precaution, another lot of IV antibiotics go in with saline, and i get bigger better horse pills, because it turns out it’s not a UTI and there’s still no sign of infection. spoke to oncologist – and his running theory is that it is my liver tumours breaking down, and the body reacting to the dead cells. THIS IS GOOD NEWS. it’s only a theory. never trust theory’s.

6. fever continued. and sort of continues. i can only control it by being extremely careful with temperature modulation. i can’t go out at night – the movement from hot to cold to hot to cold (from different outside spaces) overwhelms the frail thermoregulation and plunges me into fever. i was outside slightly too late tonight, talking to mum, and my body is paying for it with a light feeling of possible-fever if i am not careful.

so, major events.

feelings.

i am going to do everything humanly possible to avoid going to the ER. this is not because it’s awful or loud. it’s because the nurses are ER nurses. they aren’t oncology nurses. they can’t tell exactly what my cancer is like, or how far along it is, only the words on my discharge summary from the inpatient clinic. rectal cancer with liver mets – rectal surgery – +/- liver resection.
that’s not exact but it’s essentially what it says from memory. which is, i will have rectal surgery, and the liver surgery is going to be up to me, and how much i want to gamble. the people in the ER gave me the coffin face. my psychiatrist gave me that phrase and it was beautiful. and summed it up better than i could ever have hoped for. they don’t know the details. they don’t know the possibilities. they don’t know that there is hope. and a lot of risk. but hope as well.

in another issue, currently in NSW there’s a very large and vocal push for the legalisation of medicinal use of cannabis. my feelings on this are beside the point, so i won’t be discussing them. the case in question is a family, the father an ex-cop, and mother a nurse, who have been providing their terminally ill son with medicinal cannabis to help with his symptoms for his palliative chemo. i found out today, by accident, what he had. bowel cancer. liver mets. lung mets. lymph. bone.
i know. this isn’t my cancer. this is NOT my cancer. this is in no way indicating that this is what about to happen to me. the PET scan showed where all my cancer was – it located it all, christmas-tree-lights brightening my organs with the cancer cells. it’s not in my lymphatic system. it’s not in my bones. there’s no indication that, at this point, it’s where it’s going to go. it hopefully will respond to treatment. there are hopefully a lot of options we can pursue. but it terrified me.

terror is an undercurrent. i had a lot of days free of terror, because i felt so vague, so off, and so immobilised. i feel shit for how immobilised i feel. the nausea has come on slightly – i can avoid needing medication for it, on the condition that i carefully observe triggers. which means, i can’t wash up. i can’t even go near the bloody kitchen without gagging, because eating is like taking shitty medicine that i can’t stand the thought of consuming. i am a lump. my goals for tomorrow are to clean upstairs, and to tidy the bench. food-smell, animal-smell free zones. and think about starting to take my anti-nausea medication again. i have a lot to think about, in terms of what comes next. after the chemo, there are a lot of very serious, very difficult choices i will need to make about surgery, outcomes, risks, and benefits. i am trying to not face this with terror. i go forward every day into another place that scares me. i stand at these places that scare me. i worry i am a snivelling idiot to be afraid, seeing the laid back patients around me, just accepting without a flinch what is happening to them. maybe that happens with time. who can say. it was easier when a lot of these things were abstracts. when there was just waiting.

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About elizabeth

various things.
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7 Responses to temperatures, don’t-read-the-news, terror

  1. Lisa says:

    you are stronger than you think you are elizabeth.im sure your fellow patients are feeling those same fears too, even though you see them as laid back.virtual hugs to you from me.thanks again for sharing.xxx

    • veritas says:

      i think it might get more mundane with time. getting cannulas inserted is now completely no problem, and they used to terrify me. cannula me up!

  2. greenspace01 says:

    your Favourite Intern (who might be a Resident, rather than an Intern? – qualified as a doctor, training now in a specialisation) sounds absolutely lovely.

    yep, always mid-stream is best for a urine sample. easier to do with oneself than with a cat!

    coddle yourself, rest, do as much as you can safely and want to (much easier to say than do, I know) but please don’t think of yourself as a lump – you are processing so much, mentally and physically.

    avoid the ‘coffin face’ of ER nurses for sure!
    and avoid all news stories, unless they are about missing animals being safely returned home. or nifty yarn-bombing. (I really must learn to crochet)

    xo

    • veritas says:

      no news. just unfollowed the guardian on twitter. i think it’s mostly cancer related stuff i need to avoid in the media. being told my feelings are ok by people with cancer – amazing. reading/hearing stories about Bad Cancer Stuff, not up for. can’t deal. just can’t.

      • greenspace01 says:

        yes. peer support, knowing that other people have had similar (or different, but still valid) feelings as they’ve gone through chemo, surgery, recovery; tips for managing stuff – all good.
        from everything I’ve seen of your blog and FB, you’re doing a great job of being realistically optimistic (despite the terrors), and anything that works against that is Out, as you said.
        no magical “cures”, no sob stories, just peer support – or friends who don’t know anything but want to support you to manage things the way you choose to, with your excellent doctors and making informed choices along the way.
        (my fluffly ginger tabby girl Rosy has just come to sit on my lap/the laptop and have a purry cuddle. we send you good vibes and best fishes for a good day)

  3. Hi Elizabeth, you are doing great in the face of things as they are.Keep going, one step at a time. Love.

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