I’ve lived in a lot of places. Carnarvon, where red desert meets blue Indian Ocean. Prague, where white swans skate over the frozen Vltava River in winter. Bathurst, where I live now, with its rolling hills. But now, since surgery, I know that the first place I live, always, is in and through this body.
I knew the surgery had to be radical to remove my two tumours, especially the meaty one sitting between liver and stomach. Crocheting my body parts, I understood that they were threatened. Even so, the final count was shocking. Here’s the list:
* Part of stomach
* All of spleen
* Most of the tail of the pancreas
* The greater omentum
* The uterus (already skinned of its Fallopian tubes and ovaries)
* About half of the large intestine running from the top left corner down to the rectum.
The surgeons call this sort of ovarian cancer surgery “debulking”. The word “disembowelling” could be more apt.
I had a gynae oncologist working at the south end and my upper GIT specialist working up north. They worked together, flanked by their teams of apprentices and nurses, for five hours.
Afterwards, my upper GIT told me he was concerned he’d gone too far. “No, I wanted you to be radical,” I said. “There’s a difference between being radical and being a butcher,” he said. The problem for him was that even as I lay opened up on the table, nobody knew the nature of the upper tumour. It might even be benign, in which case radical action would be overdoing it. (Unlike the bottom tumor the top one was in too awkward and dangerous a position to biopsy beforehand.)
The pathology report, a few days later, revealed that the upper tumour was made of the same serous carcinoma cells as the bottom one. So it was just as well they’d gone in hard. Both surgeons said my particular presentation of cancer was highly unusual: no sign of lots of tiny tumours sprinkled through the abdomen. They said they’d been able to “get everything”.
Wow. I’d been secretly terrified of “peek and shriek”, where they open you up, sadly shake their heads and sew you up again. This is what happened with Uncle Frank in the early ’70s. The cancer had “no beginning and no end”, apparently. We don’t know if he carried the BRCA1 gene mutation, but I suspect he did.
The experience was grueling, not just for me but for my nearest and dearest. I was kept in recovery for five hours after the operation itself, and every hour I didn’t appear in the ward increased their anxiety. Eventually I did appear and I even sat up in bed chatting. I can hardly remember that now.
The next day, the pain. In my shattered state, I got myself thinking too much about how I should respond to this question asked by the nurse: “How would you rate your pain out of 10, if zero is none and 10 is the worst pain imaginable?” So I pondered the worst pain imaginable. Being burned at the stake, thrown into boiling oil … I compared these to how I was feeling. Utterly shocking, but a long way from the boiling oil. “Five?” So I suffered for about three hours, accepting it as part of the process of being gutted. Then the pain management team came round and put it differently: “Is your pain little, moderate or severe?” Severe, of course. They upped the painkillers and the day proceeded more smoothly.
Within a couple of days I was eating, sitting out of bed and walking up and down the corridor, drip stand in tow.
Then at midnight on Saturday, I had a temperature of 38. They started worrying about pneumonia. A young learner doctor (I could just about see the L on her forehead) dug around in the crook of my right arm, failing to find a vein. Something inside me began to unravel. I lost faith. Strung up on an antibiotic drip, I started feeling wretched. I was feeling queasy, which I find a worse sensation than simple pain. The next day, I started hurling. Green bilious vomit. Everywhere. Standing in the bathroom hosing myself off with the shower hose, only to get to the door and hurl again – pure misery.
And then – the magic of the thorough purge – I started feeling better.
For the next two days I cried at the drop of a hat. I cried about the miracles of life and love and body. I cried about my whole life.
At 5am Tuesday morning I opened my eyes and – I felt well! I was bathed in well being. Dawn light through the blinds. I felt a surge of creativity.
I typed into my iPhone:
“The first place is this body, made up of the descendants of ancient bacteria, fish parts. This temple, made of fish parts.”
I’m writing this on one finger on an iPad at my friend Larissa’s house in Newtown. Lisa B is here too, all the way from Brighton in the UK. And Steve, who sat in a chair next to my hospital bed all that time. We’re all watching Masterchef. Eating meatballs and pasta. I’m back in the the world again.
So, how do you live without a spleen, without half of your large intestines? The answer is that I’ve got a new body that operates differently. It’s back to the crochet hook for me, to process and absorb this difference.
Happily, it would seem that this galah will be squawking for some time yet. This week I’ve been in Sydney for a battery of tests and specialists’ appointments. Everyone has given me top marks. The CT scan shows a great big fat zero on the tumour front – well, almost. There’s still an 8mm cyst in my liver but that might or might not be part of the cancer story, but that’s nothing compared to the 11cm and 5cm tumours I started out with. They’ve gone entirely and now it’s just a matter of mopping up any remains with my last two chemo sessions. The first of these is tomorrow (erk) and then there’ll be only one to go. I’m hoping that by spring, I’ll be pronounced In Remission. Squawkin’!
