This is where I live

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.

25 thoughts on “This is where I live”

  1. Going with what the body needs to do to deal with such a massive shock to all your systems. Your body is doing exceptionally well. Has something to do with the way your mind and soul have handled it, I reckon. Onward and Up. And Yay!!!

  2. a perfect three act structure, with a truly exquisite denouement, if you don’t mind me saying so 🙂

    Always – but this time with even more – love and affection.

    jx

  3. Impatient for news, I made the mistake of reading this on the bus, tears rolling down my cheeks as I read through that list. You are such a writer, Tracy (…now I’m cross all over again about the Penguin – Galah saga). Glad to know you’re in the lurve marinade.

  4. God, what you have gone through! If courage, realism and good humour are virtues, you’re oversubscribed with all the stuff that’s better than spleen. Good luck and lots of love

  5. Aww Trace
    You are, and have always been, so much more than a some of your parts! So happy you’re eating meatballs in Newtown and not the spaghetti (sic) bolognaise of old :). Much love, Dawn xx

  6. Sitting here in the Lifehouse in absolute awe of your ability to not only survive such a traumatic experience but then to write about it so soon afterwards. Makes my week pale in comparison.

  7. Hi Trace,
    What a Hellish experience. I’m so thankful that you’ve come through it.

    I’m grateful that you’ve supplied the words and wisdom about it all because I’m like a stunned mullet, just like everybody else reading your blog.

    Lacking guts you demonstrate gutsiness.

    Bazza

  8. No literary criticism from me Tracy, though they didn’t take that part of you. Just glad you’ve made it through all that.

    Best wishes (doesn’t quite get there, but you know what I mean).

    Col

  9. Dear Tracy
    What a deeply traumatic experience! Our deepest human fear realized…. the incubation of an “alien” being, in the sacred space of our body, then having it violently ripped out . One of the very worst, and scariest of the “x-files” episodes!
    ( It must have been the “green vomit” forming the mental connection , there!) I hope this comment is ok…. just wanted to acknowledge the intensity of the experience.
    I think the “unravelling” was about your body and mind going into shock…. trying to process the horrors they had just been submitted to. So now, be gentle with your body – give it lots of rest and care. Listen to it’s quiet voice, and find out what it needs; to strengthen it for the next onslaught ( radiation or more chemo) It’s good that you have strong will and determination to recover (go Tracy !!) but devote lots of time to allowing your body to heal. Yes, the body is indeed “the beloved” and it needs lots of love and devotion right now. (“Rumi” love poems come to mind)
    Wishing you to be wrapped in a big, soft, comfy, crocheted pink “love” blanket. xxxxxx

  10. Few write as well as you Tracey. What an experience you have allowed us to share! Congratulations for your courage in doing it. Wonderful that they removed the lot. Keep up the spirit, recovery and shared words. Gillian

  11. As usual, Tracy, when I read your beautiful blog words fail me. I shall have to appropriate someone else’s: wow. Love from Kay (and John Fry) Xxx

  12. Thanks for sharing what you’re going through, Tracy. Best wishes on your complete recovery.

  13. Very good wishes. I am so glad that awful part is over.
    My beloved Aunt had what she called an “exenteration” following multiple cancer diagnoses many years ago and she died quite recently at the age of 92. She would have loved your blog and attitude. Her doctor often asked her to talk to other patients who were facing such serious operations, because she, like you are doing, had adjusted to having a different sort of body and using it wisely.
    She used her body, and beautiful mind, mostly for support of her own children and her nieces such as me. She had always been a wonderful woman anyway, like you are, and her experience made her even more empathic and expressive. I will always treasure some of her wonderful letters to me and her poetry.
    Keep up the good work (and of course, the crochet). My thoughts are with you.

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