Tag Archives: primary peritoneal cancer

Brought to you by the letter P

Today’s blog is brought to you by the letter P, as they used to say on Sesame Street. P is for pancreas. Here’s my pancreas Before.
Pancreas before By now I’d meant to alter my suite of crocheted guts to explore how they’ve changed before and after my debulking surgery, but the pancreas is as far as I’ve got. Before surgery I’d crocheted it free-form, without a pattern, learning how to do the bobbly bits on YouTube. This morning I pulled out some of its stuffing, poked the tail in on itself and sewed it off with black wool. And here it is, After.
Pancreas after I’m scared of my pancreas. It apparently disgorges acids that can eat through soft tissue, and if threatened can cause diabetes or make it hard to digest fats (chips!). Pancreatic cancer can carry you off very quickly, as happened with our wonderful local Independent federal member of parliament, Peter Andren. In hospital, before my conclusive diagnosis, Professor P casually said he hoped it wasn’t pancreatic cancer because it wasn’t really treatable and I’d be better off with ovarian cancer. So I was suddenly, bizarrely, hoping like hell I had ovarian cancer. Now, I’m trying to make friends with the remains of my pancreas (Professor P chopped off its tail on May 13) but it’s a hard call. It feels like an angry animal that might turn on me if I relax.

P is also for Pink Pills for Pale People. And for Patricia, my childhood friend from Carnarvon, whose family used to run Fong’s Drapery. She turned up here in Bathurst on Monday, just as I was falling into the ghastliness of a post-surgery blast of chemo. Tricia was asking me if I remembered the day we went into a temporary antique store on Stuart Street, in what used to be an old boarding house, where I bought a tiny bottle stamped with the words Pink Pills for Pale People. I didn’t remember the shop, or the day, or the bottle. Nothing was surfacing from the memory banks, nothing at all. Tricia wondered if we still had the bottle in the family. I said Mum might still have it. Then I remembered that just a few weeks ago, Mum had given me boxes of shells, feathers, rocks, driftwood and old bottles for safekeeping until she was sorted in her new home. I looked over at my display cabinet and saw three tiny bottles. I walked over, picked one up, and there it was: Pink Pills for Pale People.
Pink Pills for Pale People

Yesterday morning, I was a very Pale Person. After a hot shower I was standing there in the bathroom dealing with my weird post-surgery abdomen when I started listing and the world went dark. I hung onto the wall to stay upright and then Steve helped me slide down, slowly, to a position sitting on the floor. I saw myself, bald and miserable on the bathroom tiles, and felt Pissed Off (there’s that letter P) that all this was happening and that it was happening to me. But I didn’t actually faint. After a few minutes, even without a pink pill, I felt my paleness lift. Tricia made tea and toast with Vegemite, which revived me quickly, and a community nurse turned up and took my blood pressure and pronounced me not too badly off considering. Later, we drove up to show Patricia Bathurst from the top of Mt Panorama, and I looked out at the late afternoon sunlight picking out the shapes of the town and felt Peaceful. Really.

Chips and bugs by the water

moreton bay bugsToday one of my doctors, Professor H, asked me what I’d had for lunch yesterday. I told him I’d eaten a Moreton Bay Bug and chips at the Sydney Fish Market. He was impressed. So impressed that he said I could go ahead and have chemotherapy tomorrow. Not exactly a welcome reward. Haven’t I just had massive surgery? Is my abdomen not a maze of tracks and scars and strange plastic protuberances? Why would you want to soak my remaining delicate organs in a bowl of poison so soon? But I’d eaten chips, and had no ill-effects. This was proof that my guts – including my halved pancreas and clipped stomach – were fully functioning and perfectly capable of withstanding a new onslaught.

Professor H said I was going exceptionally well; I was in the best possible place I could be, considering where I’d started out. I’d recovered quickly from surgery, I had no visible tumours, and the next three cycles of chemo should knock out any microscopic cancer remaining. I started seeing the light at the end of the tunnel. I’m over the big hump in the middle; I’m on the home run.

So, it’s chemo again tomorrow. It’s daunting, but doable. I’ll be back at Westemead at 8.30am in the morning, offering my vein to the drip machine.

In the meantime, I’ve been out of hospital for a week, staying at Larissa’s in Newtown with Steve and my dear friend Lisa B, who flew out from the UK. From a mostly prone position at first, I gradually got around a little more each day. Then, yesterday, I went on a proper outing that had nothing, absolutely nothing (visibly, anyway), to do with illness or hospitals. It was instead a moment of sea and sky and piles of fish and seagulls and boats. (Impossible to turn off the part of my brain fretting about overfishing of the world’s oceans, but I managed to keep the volume low.) Again I marveled at the extraordinary vibrance of the world just going about its business. We bought Moreton Bay bugs and chips. As soon as we opened the carton, a seagull stole a chip. We got wise and left the lid down, only lifting it a little to get the next chip. I ate a whole bug in garlic butter. Here you go, pancreas, a little challenge! It passed with flying colours.

Meanwhile, I’ve been working on my crocheted guts, reworking the collection to reflect the new arrangement. Should be ready to post some pics next week.

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.

Fully debulked

On Tuesday I was wheeled in to the Theatre of the Abdomen. Five hours later, I was wheeled out missing various body parts; fortunately they’re all bits that we can live reasonably well without. I’m now semi prone on my hospital bed typing this with one finger. One of my surgeons liked the plastic bag of crocheted abdominal organs; the other hasn’t seen them yet. And now I’m going to sign off and go back to drifting in and out of painkiller-land. I’m hoping to have my brains back by next Thursday.

Once more into the doughnut

I had to go back through the doughnut hole yesterday. It’s the big white machine that talks to you (“Breathe in and hold.” Pause. “You may now breathe normally.”) while you are shunted in and out like a tin of tomatoes on a conveyor belt. I really didn’t want to go. I drove on auto-pilot to the Russell Street Medical Centre and was trying to park when I realised I was in the wrong spot. I should have been at the PRP Radiology clinic in Bentinck Street. The business of getting to this appointment was taking me back to that chaotic day in January when I had a CT scan and then innocently went off to my GP who assumed I knew about the results and started talking about two tumours as if they were old news. Traumatic. It was only yesterday that I realised how traumatic this had been. Fortunately, yesterday’s scan was easy peasy. The needle went straight into my vein without any mucking around, because I knew to drink gallons water beforehand. As the radiologist pumped dye through the cannula I felt, without alarm, the weird sensation that feels like you’ve peed yourself (you haven’t). Before I knew it, it was all over. He was packing me up and sending me out and saying the CD would be waiting for me at the front desk. I told him I did not want the CD because I didn’t want to be tempted to look at it before my specialist sat me down to talk about the results. When I go to see the specialist tomorrow (she’ll have picked up the results online), I’m going to say, as soon as I walk in: “I don’t know the results of my latest scan. Be gentle with me.” Later, once everything has been settled, I might go and pick up the CD. By the time I look at it my abdomen will have been radically re-arranged so it won’t matter any more.

So, tomorrow I’ll be getting some important information. I’ll find out if my three chemo sessions have successfully shrunk my tumours, and I’ll find out if I’m well enough to be operated on next Tuesday. All very daunting. Fortunately, I’ve been able to throw myself into crochet! I’ve almost finished my guts. I’m going to stitch them into a brown cushion that will just look like any old brown cushion on the sofa until you unbutton it. I’m dithering about whether to take my bag of guts with me to the specialist. I’m wondering if my surgeon will be impressed or just think I’m wasting precious time in the consulting room. I guess it doesn’t matter either way – my woolly guts have helped me enormously. In making them I was able to learn a lot about my internal organs, say a provisional goodbye to some of them and enjoy the take-your-mind-off-things absorption of a pleasant, creative task.

Today is World Ovarian Cancer Day. The big message is to be aware of the subtle symptoms of ovarian cancer, which usually try to pass themselves off as something more benign, like indigestion, constipation, a feeling of fullness after eating, and so on. Most women are only diagnosed at a late stage, once the cancer has spread because they and their doctors spend months (or years) working through other theories. While my own cancer is called “primary peritoneal cancer” it’s exactly the same as ovarian cancer (it’s just that the origin is in cells attached to the peritoneum, not the ovary), so I consider myself a member of Team Teal.