Nettie's Kancer Kitty

Annette McLeod has advanced ovarian cancer and needs help to ensure that her son and her partner will be able to manage financially when she can no longer work. 

Nettie is our family, our friend and there are a lot of us. When you meet her it’s easy to see why – she’s so full of life and fun, she’s audacious and giving, energetic and loving, incredibly funny and always up for the next adventure. She’s got a laugh you’d give your right arm for. She’s an amazing mom, daughter, sister and friend. She’s a fabulous cook, a superlative writer and creativity literally pours out of her. To put it in a nutshell, she’s fully alive.

And there’s the rub; a few months ago, Nettie was told she has ovarian cancer and her chances of long-term survival are very small. Nettie’s prognosis and treatment are seriously complicated by the fact that she’s been living with autoimmune hepatitis for many years and her liver disease makes treatment very difficult. For Nettie, at age 48, the diagnosis and prognosis were devastating. Her first thoughts were for her 8-year-old son, Callum, who is the center of her life. She is also very worried for her partner, Brian. 

Because both Nettie and Brian are self-employed they don’t have the safety net provided by insurance plans – there is no insurance to pay for the drugs that OHIP doesn’t cover, no disability insurance, no coverage for supplemental treatments. So, in addition to all of the medical worries she has, Nettie is also deeply concerned for the futures of her son and partner and how the three of them will survive financially when she is no longer able to work.

Please consider helping them by making a donation to this GoFundMe effort, so that Nettie has some peace of mind as she faces the coming months.

With gratitude,

Nettie’s Friends

 
My story

In my late 20s I was diagnosed with autoimmune hepatitis. Yeah, I’d never heard of it either. Turns out my body had turned on my own liver as if it were a donor liver. I was treated and eventually felt fine. Many autoimmune hepatitis patients go into permanent remission, and I just took it for granted I was one of them.

In June 2009 my son, Callum was born and in 2011 after having worked for the Sun for 25 years I became a freelance writer and editor. Around that time, I tried to get life insurance and was denied — my liver enzyme levels were once again elevated. I was sent to the liver clinic at Toronto Western and told my hepatitis was back, and that my liver was scarred. I took the news like a physical punch to the guts — I could actually feel it. I could think only of Callum, and assumed I was on the road to a liver transplant. I still felt fine, though, and after I got over the initial shock, carried on.

In 2013, Callum’s dad and I ended our relationship and a few months later I met Brian, a roofer with a weird sense of humour, and fell in love. Really in love, like that goosebumps, can’t stop thinking about him, who knew an old broad like me could get so lucky kind of way. We tried to run a roofing business and failed. We stayed in love in spite of the difficulties of trying and failing to run a business a together. In spite of everything, we still laugh a lot.

This past June, 2017, I began to feel bloated, and generally unwell. It didn’t occur to me until days later that the bloating might be ascites, a fluid on the belly and a likely sign of the decompensation of my weary liver.

One night, the fluid was so uncomfortable, I got a friend to take me to the emergency room where the admitting nurse told me it was normal in “end stage” liver disease. My GP referred me back to the liver clinic, to an autoimmune specialist who sent me for a CT scan. By then, we’d moved from Whitby into a rental house in Scarborough, and by now I was really sick. Could barely get up the stairs. Passed out on the dining room floor while having company sick. Still, the “C” word never occurred to me. I’d been prepared to one day perhaps hear “liver cancer” but I’d been vigilant with my twice-yearly ultrasounds and there had never been any sign of it.

A few days later, the autoimmune doc called and told me, over the phone, that the fluid in my belly was cancerous.

Brian and I looked up “malignant ascites.” Go ahead, Google it. Not good, eh? If it was gastric … well, a few weeks was all I’d have. We cried. We hugged each other. We waited for the CT scan she’d scheduled for the following week.

While I was in the scanner, the technician came over to me, looking alarmed. “Are you having trouble breathing?” she asked me. I told her no, but that I’d been coughing a lot. The radiologist told us my lungs and abdomen were full of blood clots.  Later a young, handsome member of the internal medicine team let us know that the cancer started in my ovaries, but had metastasized into my belly, into the omentum and peritoneum. Brian and I actually high-fived each other. Ovarian! It wasn’t gastric - I had a chance.

I was admitted for a week and the blood clots successfully treated with thinners. A week or two later, I saw a surgical oncology fellow and for a moment felt a surge of hope — I’d get surgery, maybe have five to seven years. I quickly did the math; Callum would be 13 in five years, 15 in seven. Almost a man. Better than being eight when you lose your mom. Brian and I felt like I’d won the lottery for a second, until the oncologist came in and untold us everything her fellow had said. She said that, because of my liver complications, surgery wasn’t an option. I’d have to get chemo first, and only if it worked well might I have surgical options. I had varices and portal hypertension. I could bleed out on the table. My odds weren’t good enough. She wouldn’t touch me.

In September, I started chemo, on a reduced dose and on an irregular schedule, because of my dodgy liver. I had low white blood cells, which were treated with shots following each session, and low platelets, which couldn’t be treated so we just waited them out. I was a couple of weeks on, a few weeks off, a week on, a week off. I held up well, though, with few side effects except that my hair fell out.  I was also getting a paracentesis weekly where they stick a large catheter needle in my side to let gravity drain all six or seven litres of belly fluid into a bag. Fortunately, the doc at the procedures clinic at Princess Margaret is a friendly former ER doc who’s always good for a chat, and the Tuesday nurse Lettie is wonderful gramma type who always wraps me in a warm blanket.

I had a CT scan in November that said the main tumour was big, it had grown to 10 cm from three, and that little else had changed.

Following that, the chemo onc put me a break that was to last into the new year. She said my liver couldn’t take more. She told us I had 12 to 18 months.

I’ve just completed 5 weeks of daily radiation treatment and I’m waiting for a CT scan in the hope that it has shrunk the tumor.

We live now on tenterhooks. What we do know is that my lifespan is significantly shortened. I will be lucky to get a couple of years, if my liver holds up and a bowel obstruction or some other ugly side effect of cancer doesn’t get me first. Because of the surgical risks, my options are limited. I believe I will see Callum turn nine. I hope I will live to see 50.

I lost my mother and my best friend to cancer, at 64 and 54 respectively. I always assumed I’d at least live longer than they did. I may be wrong. If attitude counts, I may be right.

I feel pretty good right now, with few symptoms and a supportive partner, amazing friends and a loving family. My father, nearing 80, is devastated, and I worry that my dying will kill him, and Callum will be robbed of two of the people he loves best in the world near the same time. I know he will be heartbroken at losing me, and that’s the worst of it — who wants to break their own kid’s heart?

The financial reality is another matter. Because Brian and I are both self-employed we have no benefits and no security. Because of my pre-existing condition, private insurance was always too prohibitive, so I gambled without it.

I have a few thousand in savings, but it won’t last long if I can’t work. Brian works hard but roofing is seasonal, and not always terribly lucrative.

We’ve never looked to anyone for help, but a death sentence makes you contemplate things you never would have before.

And we need help.

When the day comes that I can’t work anymore, I may have months left with no income. It will fall to Brian to take care of the bills, the house and me, and it’s too much for one person who’s already grieving the loss of his lover and best friend. My elderly father and stepmother are two hours away, and not in good health themselves. And not wealthy either. My father had kidney cancer, and now has one. He had a stroke, and a quadruple bypass.

We hope to raise enough so that when the inevitable decline comes, it’s one less thing to worry about. We hope to leave Callum with a university education assured if that’s what he wants. When I’m gone, Brian will have to decide where to live, but his staying in our home depends on two incomes. He will have to move. I will have to be buried, or shot into space, or turned into a tree, or something, and that costs too. Besides Callum, Brian is the love of my life, and I his. He has been a rock for me, and doesn’t deserve to have to move the day after my wake. None of it is pretty, cancer least of all, but it’s real, and it’s our story. We hope those whose lives we’ve touched can help us make the ending, if not happy, at least not as miserable as it has the potential to be.

I want to dip my toes in a tropical sea once more, and maybe we’ll spend a week in Cuba doing that and building a few more memories with Callum. I’d love to show Scotland to my son, the land of his ancestors and my favourite place on Earth, besides home. I’d love to show it to Brian, who has never been further away than New Jersey. If I’m still feeling good next summer, we hope to get that chance together. We are applying to a make-a-wish for grown-ups to try to make it happen.

A bit of it will go for a trip to Detroit to see an ovarian cancer specialist my GP says is the best, just for a second opinion. To the best of my knowledge, there is no experimental treatment in Texas or Prague that will help me.

I have love. I love Callum and Brian, my dad, my brother. I love my work. I have the best friends in the world, who bring me food and buy me hats, who take me out to lunch and mail me T-shirts, who come over and clean my bathroom and drive me to chemo and cry on the phone with me. Whose voices tremble when we talk about it. I have a lovely rented house with a nice landlord and a park in the back. I have the most amazing dog, a mutt named Harley who looks at me with pure love all day long while he’s stuck to my side. He protects me when Brian tickles me, and lets Callum crawl all over him. I have a hamster no one else will feed. I want to finish my novel someday. I have skinny jeans I can fit into as long as this ascites goes away. I have everything to live for.

I’m tenacious, and will hound these doctors for answers and for treatment.

I am not in a battle here. I am in a body that does not match my mind, as so many of us are, but we’re in it together, my brain and my ovaries. I’m not fighting cancer, I’m just trying to get along with it for as long as possible, with a meaningful quality of life, so I can see my boy grow.

And then, in 12 months or 18, or five years or seven, I will die. If I’m not around to show Callum how to live well, at least I can show him how someone with a sense of humour, a wonderful life and a little finesse, can do that.