You can read this one but I do think the video is better- it gives more context.
New readers start here, then read the Intro, then Chapter 1 etc, to catch up.
I turn up to the hospital on Monday as promised.
First it’s a PET scan. For anyone who’s never had one, they inject you with a radioactive sugar and wrap you up in warm blankets for an hour, so the cancers in the body can absorb the sugar and show up on the scan. Or at least that’s how I understand it. The point is, it shows where there’s cancer.
Then there’s a CT scan of both the brain and the body. Then a liver biopsy. Then a drain of the ascites - the swelling in the stomach. Thank God for that. I’ve been living with the swelling for so long and have been hardly able to move.
It was a busy day.
An important note on the liver biopsy - and all procedures really - I was offered sedation for this but I asked for a local anaesthetic. I know from experience that it takes me ages to get over any kind of sedation, and that it affects my mood, and I didn’t want that on top of everything else. In hospitals sedation is often the way things are done simply because people are scared - there’s often no medical reason for it. So if you’re not scared, you can ask for a local instead. It’s less drugs for the body to process, plus it’s interesting to see what they’re doing - it’s a great opportunity to ask questions whilst they’re working on you. I chose no sedation for my port insertion too.
Anyways, I wait overnight for the results in the morning.
It’s not the news you want to hear.
Anything dark is cancer.
That big dark thing is my liver, which I learn is already 80-90% cancerous. At this level I’m what the oncologist calls ‘at risk of immediate liver failure’. She’s deeply concerned.
It’s also in my ovaries, abdomen, and a couple of bones, including my femur/hip. But we don’t talk about them really - it’s all about my liver and how we prevent immediate liver failure.
There’s no good way to spin this. It just is what is. Terrible news.
I’m now a woman with stage 4 cancer, and at risk of immediate organ failure.
The good news however is that it’s breast cancer that’s gone walkabout, not liver cancer. An important distinction, as it means there’s treatments. If it had been straight-up liver cancer, not so much.
Interestingly, I don’t cry, or feel much of anything, I just accept it. What else is there to do?
I have my pre-prepared list of questions for my oncologist, which as you know I strongly recommend to do to avoid getting lost in the overwhelm of the moment, and I ask about my statistical chances of living in a range of different scenarios. Am I dying now, or soon? What are my chances of living? What are my options for treatment? What are the side-effects? But mostly, am I dying?
I make it clear that if I’m dying I want to die at home in the UK. The advice I’m given is hard to swallow: That I’m too ill to travel, and anyway a lot of airlines won’t take someone this ill - too much risk. If I want to see anyone before I die I need to tell them to come here. Now.
Then comes the DNR conversation - Do Not Resuscitate. When you’re Stage 4, your medical team are obligated to discuss your wishes. Do you want to be resuscitated if you crash? I remember years ago reading an article written by a surgeon who said that the image we have of it - from watching medical TV shows - massively over-romanticises the situation. That in fact it’s brutal, can break bones, and leave you in a terrible state. My strong instinct was DNR - if it’s my time it’s my time. I asked my oncologist what she thought of my decision, and her response was “Jane, your liver is already almost gone, if your heart and lungs are gone too, what do you have left?”. She’s not wrong, and so I’m firmly DNR. Whenever I deal with a new medical team or specialist I make sure I tell them this, and how important it is to me. If it’s important to you too, make sure it’s documented/signed at the hospital, and that whoever is your Medical Power of Attorney is really clear on your wishes also - it’s them who would have to make the call in the moment.
She tells me I’m the most direct patient she’s ever worked with - more direct than her she says, which is really something, for anyone who knows this powerhouse of a woman. But if you don’t ask what the outcomes are for different scenarios how you can decide what do do? I appreciate her honestly immensely.
Now I’m being cared for, I feel safe to collapse physically, to let go. After months of not knowing, and having no medical care (see previous chapter), I’m exhausted. I spend 2 days lying in bed, in that state that’s mid way between awake and asleep, relieved and grateful that there is a team trying to help me save my life.
In this time I have one of the most extraordinary experiences of my life.
It’s as if the energy of death is all around me. There aren’t really adequate words to describe it other than to say that it was the presence of a vast nothingness. It didn’t feel dramatic, there was no sadness, no fear, no emotions at all. It just felt huge - like nothing I’ve ever experienced before.
I felt that I could have easily crossed over. I wasn’t sure if I was being invited to do so - perhaps it was more that the option was there.
I spent 2 days in this state, communing with this energy, speaking to it. I considered whether it was my time to go and if I should just say yes, take me, I’m ready. I spent a lot of the time asking myself questions I’ve never considered before, mostly wondering whether we all have a destiny that’s out of our control, that we should simply submit to, or whether we have a choice in this thing called Life.
It felt to me that the experience I’ve had the last few years would be for nothing if I left now. I’ve spent a large chunk of my life, living what I call a selfish life, focussed on myself, my career, my status, my financial situation - all of it a substitute for not knowing what I was here for. I used to feel envious of people who ‘had a purpose’. It felt odd that for the first time I feel I have something useful to offer to the world and you want to take me now?
In the end I said to it “If it’s my time, I’ll come, I won’t resist. But I’d rather stay on this side for a while longer. I have things I’d still like to do here.”
I was never scared - or even emotional. I’m not sure why. But after days of this dialogue, I woke up one morning and the death energy was gone. I took this to mean I’d been given some extra time, but that might be wishful thinking.
In parallel, and in a horribly depleted state, I start making my wills (UK and Australia), which is a thing you need like a hole in the head when you’ve just been delivered the news that you’re hanging on to life by a thread. But it’s incredibly important to do it when you’re of sound mind and body, and not full of the drugs they give you in palliative care. In fact I would recommend that everyone makes a will now - do it whilst you’re healthy. There are some big decisions to make, and it’s better to do it when you’re not exhausted and trying to stay alive.
So I had decided to keep going, and my oncologist wasn’t for giving up either. And so began the work to try and find a way to stay in this dimension for at least a little while longer.
Next week….I find myself back in hospital and working hard to stay alive.
Don’t forget: Love yourself, love your people, love your life 🌟🌟🌟
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VOL II CHAPTER 7 - Finally, a diagnosis