Post oophorectomy, I have diminished estrogen in my body and vaginismus (painful pelvic-floor contractions) that not only affect my ability to have children but my ability to have painless or easy sex.

Chemo can cause the same problem, but people don't like to talk about it. I have to use dilators and creams to prepare for sex, and that takes a commitment of at least 15 minutes a day to maintain the level of elasticity necessary. It's a lot of work.  What's more, I no longer have the same sense of being beautiful as I did before and the sex we have is different because my husband is constantly afraid of hurting me. It's definitely a challenge.

Fertility and the inability to have children is perhaps the most difficult.

I had a meeting with fertility doctors who told me that they don't provide IVF treatment for people with Stage IV Cancer. For one, I would have to go off of my cancer treatment. Two, it would be incredibly dangerous with my hormone-positive cancer. My doctor also told me that I would never be able to adopt a child and explained that even people who were in remission or ostensibly cured would be turned down, even with a healthy partner. I understand if you are Stage IV and the adoption agency wanting to have two healthy parents, but even with one parent who could live a long time, adoption is not an option through an agency. We all live with the possibility of death, and most young adults can't afford the cost of IVF. The costs are astronomical, up to $100,000 if I was allowed to do it. It is really out of reach for many young people who are early in their careers or paying off students loans unless they have a lot of family and community financial support.  

Initially, I was told 18 to 24 months was the median lifetime expectancy for my cancer.

But then I was also told, "we all have patients who live longer." Once I get to the 5-year mark, then I’ll go down to a 20% chance of having a longer life, so you see that dramatic drop; 80% of women with my cancer don't make it to 5 years. But, statistics aren't people.

There are all these cancer-related things that are not life or death, but affect you and affect you in a significant way.

I have Horner's syndrome, so one of the lymph nodes pushes against a nerve that controls my left eyelid which droops a little bit, and it doesn't dilate properly. It’s my face! Other people don't really notice it unless I point it out, but I notice.

My voice isn't my voice anymore and that affects me a lot.

My voice! It’s my voice! ... c’mon ...even that!?! I often feel like I don't have control and so much of my identity is wrapped up in these things like how I hear myself, the ability to control the modulations of my voice, and what I look like in the mirror.

Going for walks outside, especially long rambling ones is one thing that really helps me.

I used to be a runner but I can't run right now because of the pain in my bones. But I can walk. By walking I can still have that experience of seeing the city at a human pace. By walking, you experience the slow changes of a place and your relationship with what's there changes. That's been incredibly important to me.

One of my main ways of coping is that I have a psychiatrist.

For a few years I even had two psychiatrists, because my primary psychiatrist wasn't able to see me more often than once a month, so she found me a second psychiatrist who could see me weekly. I've visited a psychiatrist for years, since shortly after my de novo diagnosis, because I've wanted to talk to someone who wasn't my husband. I talk to him about everything, and he is my primary support, but I didn’t want to put everything on him. I wanted to have a space where I could get it out and cry about it and share my darkest fears without hurting the person who was listening. It's hard with family, to have them not take on related pain when you're showing the true depths of your pain. Very few people have seen me letting the depths of my pain show.

Because I'm alone so much, we're in the process of getting a puppy!

I'm really excited. That way I won't actually be alone. I'll have someone following me from room to room and that will be great. Animals give a pure love that's so nurturing...

I'm finding that people are now more ready to accept and share their love.

Friends who maybe wouldn't have said that they love me before, say it now. I'm really grateful for the way they show their love in action, by giving me a hand when I need one.

I have a really good community and I think that's a good place to be in when you're coming into a thing like this.

Still, it's hard to know how to build that up for people who don't have it. I think that's one of the great things about this project; it builds ways for people to connect.

Most of the new friends I made when I was first diagnosed have died.

We talk about that statistic of 5-year survival for my type of cancer (20%). Our group started as five ladies who had the same disease and they are all gone now. I'm the only one left. Friendships that initially grow out of needing support, needing one another, can turn out to be something that causes us pain and “survivor's guilt” and all of those things. We have to find ways to reconcile those things.

We fall through the cracks a lot because even among doctors the expectations of someone who looks generally well, who is generally well, is that they don't have cancer.

I applied for the Early Detection Program because I have a pretty strong family history, but I was denied because I didn’t have anyone who was first-generation, even though several close family members had cancer and all of my family’s cancer diagnoses were when we were young - in our thirties. But I knew to watch for it and I knew to be careful. When I was diagnosed with Stage IV,  I was told, “We were looking for horses, but you were a zebra. You look like a horse, you sound like a horse, but you’re not a horse.” So they didn’t necessarily know the right thing to do.

We did a lot of research, and we knew people who knew people and this oncologist kept coming up in our conversations who fit the description of what I felt I needed.

We emailed the oncologist directly and he wrote right back and quite quickly I started treatment. Access to a high level of care is not something that everyone has in Canada and that's kind of devastating. We live in a country that's so far flung and we have so many rural communities. You can't really run everything out of these small centres, but it means patients are missing out.

When I was first diagnosed, I was diagnosed in a different hospital than I am in now.

It was a smaller centre, and they didn’t have any oncologists on staff. A surgical oncologist called me and told me, “You have cancer, it’s Stage III. We’re going to do chemo, then surgery, then radiation, and soon you’ll be on the other side of this.” He told me, “This is going to be your worst day.” And I believed him. But then, when I got called back ten days later only to hear “We’re no longer looking for a cure,” that was the worst day. It really was the worst day. It was devastating. I was crushed. To me, it’s incredibly irresponsible that he gave me a diagnosis before all the information was in. It affected my trust, and that’s why I decided I didn’t want to be treated at that hospital.

The nurses are so wonderful here.

They are so capable and I barely ever feel a needle go in! These are things that I care about. Things like kindness. Simple kindness.

The quality I value most in an oncologist is someone who is straightforward, who tells me the facts directly.

It's someone who doesn't sugar coat anything, but also doesn't have to power over things. I also like humour. I don't like to break down around people, so I don't want someone who would be giving me "sad eyes.”

We slowly adapt to other things that happen to the point that your life becomes kind of unrecognizable.

I think about that a lot, like how completely different my life was. I hardly ever came home for anything. I used to spend my days going to the office and working, and that was the shape of my life. It is all so different now.

Now I know so much more about hospitals than I thought I would ever know about hospitals and how they work.

It's like in Italo Calvino's book Invisible Cities, because they are all sort of overlapping concentric circles, occupying the same space but not at the same time. I think of hospitals in the same way, as a previously 'invisible city' for me. Within the hospital, there are their own cities with their own specialists and waiting rooms in the hallways that are like roads between them. I wasn't used to all these things like all the machines and the beeping, and then it slowly becomes normal, your new normal, what normal is.

When I first got sick I thought "I'm never going to see a giraffe in the wild."

My husband said, "Let's go to Africa!" So we went to Africa and had a safari and visited friends in South Africa. We saw Johannesburg and went to Cape Town and all these lovely places. Then my husband asked me to put a Top 3 on my travel list and we've completed that Top 3 which included Machu Picchu and Angkor Wat. Now we're working on where the next trip will be. I told my husband that I want the next place to be a place that he wants to go to because it's been all about me for too long. So, we'll be visiting Eastern Europe next. We're going to start in Berlin, then to Vienna and Prague and maybe Bratislava.

I heard early on that palliative care is related to better outcomes.

Those outcomes can be things like less pain and better quality of life, which are really significant things. I've been going for palliative care since my first year. I've been working with them to manage my pain and side effects since and it's been tremendously helpful to me.

Through palliative care, my friends and family don't need to carry the weight of my quality of life themselves.

I think it's important to stress what palliative care really is, because so many people hear 'palliative' and they think 'end-of-life care'... but palliative care is so much more.

Even with Stage IV cancer where someone is able to carry on their life and do well, there's still a place for palliative care that is incredibly valuable.

There's a misconception about palliative care - and not just among patients - it's doctors too. I've heard of some patients asking for palliative care and being told: "well you're not dying today." I think it's simply because they conflate one word for another, not because people don't need it.

Before my diagnosis, I was the marketing director for the Nature Conservancy of Canada.

I occupied the city in a different way before than I do now; the places I went moved in different circles to those I visit now, even though they occupy the same ground. For example, I might still get off at Queen's Park, but in the past, I might have been heading to question hour at Parliament whereas now it's to go to the hospital.