Chapter 8 starts with an emergency admission to hospital at midnight with a temperature of 39.5 degrees and me thinking I’m about to die.
My oncologist has put me on a chemo tablet which is apparently miraculous - 80% effective in extending life expectancy. She says she has clients who are living great long lives on it. I want that.
I’m hugely optimistic and start taking them.
One day about a week in, I start feeling nauseous. And I start shaking - cold and hot at the same time. It turns out it’s called rigor: “a sudden feeling of cold with shivering accompanied by a rise in temperature, often with copious sweating, especially at the onset or height of a fever.”
I put 2 winter coats on and get in bed. My teeth are out of control chattering, my jaw won’t stop moving.
I have an oncologist you can call any time of day or night - she’s a a rockstar. It’s 6.30pm - to avoid a midnight call later I call her now. I tell her I’m feeling awful.
Her advice is to go to hospital if things get worse, particularly if I feel myself about to slip into unconsciousness.
I take some nurofen which help and I go to sleep.
I wake up at 11.30pm and my whole body is shaking. I can hardly speak.
I go to the bathroom and realise I can’t stand up. I collapse onto my knees and quickly realise this is what slipping into unconsciousness probably feels like.
I call her again before I’m incapacitated - she says go straight to hospital and calls ahead to the Emergency Department.
I call the ambulance.
All I’m going to say on that experience is that there was an absence of any sense of emergency, even though I could barely speak and I repeatedly told them I have stage 4 cancer. The response was “someone will call you back”. Meanwhile I’m trying to stay conscious and not panic.
I take some more nurofen and a valium because I live on my own and I remember being very conscious that not panicking was really important.
I call some friends for a lift, rather than waiting for an ambulance, but it’s late and everyone already has their phone on silent.
I gathered together my toothbrush, all my medical notes, and my phone/ipad chargers - you need your devices in hospital to stay in touch with people or it gets very lonely.
I call my bestie who has arrived from the UK - that day - to look after me for a couple of months, and ask him to meet me at Emergency.
I make sure the front door is unlocked and the light is on in case I collapse. One of those useful facts you remember - means they don’t need to get the police to smash the door in. I do like my front door.
The ambulance service calls back. The woman I’m speaking to realises I’m in desperate need of help and sends an ambulance. I even got permission for lights and sirens, which is very dramatic.
Surrounded by my big winter coat, I go and lie on the floor by the open front door, with the light on, and my little bag of medical notes and toothbrush and chargers.
They arrive. I’m so glad someone is there.
They get me to hospital about 1am-ish. Before I’m allowed into the building they do a RAT test, which is negative. But then they put me in a covid isolation bay and do a PCR, meaning I find myself on my own, in a tiny little room, wrapped in 2 winter coats, just as the vomiting starts. There is no attempt at care - the negative PCR is the ticket to entry. I think my temperature is 39.5.
Thank goodness I had the foresight to take the nurofen and the valium because they’re the only things holding my symptoms in check. No-one is coming to help and I have no idea when anyone will come. There’s a sense of feeling abandoned.
They won’t let my friend Matt see me, so he goes home to be Dog Dad. Thank goodness for him.
And there I lie until 5am.
At 5am the rigor starts to make it’s presence felt again - obviously my self-dispensed meds are wearing off. I press the green button on the little handset they give you in hospital to call for attention. My patience has run out. I need help.
The poor doctor who comes to see me looks exhausted, and I feel so deeply sorry for him I think I asked him if he was ok. But I tell him they have to do something for me - I can feel the rigor about to kick back in big-time. He tells me their theory - that I have pneumonia - and that they want to do an X-ray, which I’m not interested in at all. I know my body. I have stage 4 breast cancer in the liver - I want them to focus on that. I refuse the X-ray. They give me some antibiotics instead, which do at least help.
But my temperature isn’t going down. In the end I realise I’m going to have to look after myself and so I take off all my clothes and lie on the cold tiled floor with my winter coat over me and ask for some cold wet towels for my face. I can hear them talking about me behind the curtain as if I’m mad, but I couldn’t care less, I just know I need to do something to help myself. After a couple of hours my temperature does start to come down. Probably helped by the antibiotics too.
And so there I am, on my own, in this tiny little isolation bay, with a horrid grey curtain, hearing the woes of those in the next little isolation bay, horribly conscious that they’re listening to my vomiting and probably hating me for it, and wondering if I’m going to die here.
But I’m not allowed onto the ward until my negative PCR comes through, so the next few hours are spent with me repeatedly asking whether they have my results. I think I’m right in saying I eventually got to the oncology ward at about 4pm the next day. I could be wrong - it was nuts and I had a fever. The point is, it wasn’t a fast turnaround for someone in such a serious condition.
Long story short no-one know what’s wrong. I keep vomiting and I feel horrid. Fortunately, as it turns out, I stop taking all my meds. No point taking them if they’re all coming right back up again - and so I stop taking my chemo meds for the next few days. It turns out that this gives us a clue as to what’s happening.
The problem though is that now I’m off my meds, my liver/cancer numbers are going through the roof. My oncologist wants me back on the meds asap - or I’m going to die of the cancer. It’s as simple as that.
(Note for anyone not used to reading medical notes: the numbers in brackets on the right are the levels/variations in healthy individuals. The numbers in red are my actual levels.)
When I can keep food and water down again, we restart the meds.
The vomiting is instant. I feel like I’m dying - that kind of vomiting that makes you feel like your insides are coming out and drains you of absolutely everything.
We start to realise the meds are toxic to me. What are the chances? They’re only toxic to 2% of women globally, and so of course we weren’t looking for this. But it had to be me.
It takes a few days to re-stabilise.
Because my cancer is so advanced and these meds are so good, we want to try again. We reduce the dose and up the anti-vomit meds. It only results in another 3 days of vomiting and not eating/drinking.
We go further. An even smaller dose of the chemo and an even higher dose of the anti-vomit meds. Another 3 days of vomiting and not eating/drinking.
During one of these experiments, I have my head down the toilet, my blood pressure has dropped to a dangerously low level, and there are 2 nurses trying to find a vein to get some anti-nausea meds in. I’ve drunk so little for so long they can’t find a vein that’s in the least bit interested.
I ask them ‘am I dying?’. I wasn’t scared and there were no histrionics, I just wanted to know if I was. They did that thing that nurses do where they tell you everything is fine to keep you calm.
But it’s not fine because pretty soon - at 2.30am - there are 2 ICU doctors in my room in scrubs, and they’ve already called my oncologist twice (11pm and 2am), I assume to discuss whether to resuscitate me if I crash (see previous chapter). It dawns on me that this is in fact very serious and I could very easily be dying.
But somehow I made it through the night.
The next morning my oncologist tells me that ethically we can’t keep trying these meds, no matter how good they are. Which is good, because I had nothing left to keep going. We agree a different chemo plan.
By now, I’ve had 3 close calls with death, I can hardly lift my head off the pillow, never mind get out of bed, I have a face full of cold sores, I have bed sores, and I’ve lost 5 kg. My body is hanging on by a thread.
For the first time I feel my will sapping. I hear myself say to my friend Matt “I’m not sure I can do this”. I can hardly believe I’m saying it. I’m a tough cookie. These are not the kind of words I say. But I was just so tired, emaciated, defeated. I had started to doubt my own strength.
I realised it was a fork in the road and I had to get out of there, to get myself back.
The next morning, I came off all my pain and nausea meds, I tell them I’m leaving the hospital tomorrow and I determine to find another level of strength from who-knows-where to keep going.
We leave the hospital the next day as planned. The world outside feels wonderful and magical and I’m so happy to be going home.
I remember begging Yen my oncologist for some time to rest before we start the new chemo, but brutal as ever, she just said “you don’t have time Jane”. We start the next week.
I go home to my dogs and start to feel better immediately.
I sleep solidly - day and night - for 2 whole weeks.
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Sending love as always 🌟🌟🌟
VOL II CHAPTER 8 - What we're trying isn't working