somehow, i thought

I thought it would all happen more quickly than this. I thought if I had no complications, then I would just heal.

I thought that "three days in the hospital and two weeks puttering at home" meant that by the start of the third week I would be running errands, writing, going for walks and yoga and that I would be putting this behind me.

It's not happening that way.

I am healing.

I'm just not very patient.

My head still hurts. Sometimes a lot.

I am more tired than I could have imagined.

I still feel stoned, even when I have taken nothing for the pain. My brain is just not working properly.

And my fingers don't seem to want to type what my brain tells them.

It has been three weeks since my surgery and it really doesn't feel like it was very long ago at all.

Except that I'm less patient now.

Which is probably a sign that I'm healing.

I'll get there. Of course I will.

Today, I just wish it were easier.

healing

Well it's not been linear but I definitely am healing well.

The drugs have made it hard to concentrate and type but things are progressing well. Today is the first day that my fingers and my brain seem to move more in concert.

And now I have treatment tomorrow.

So please don't worry if I don't blog. I'm doing fine - and expect to get back into regular writing next week.

Thanks so much for all the love and support from near and far.

It means more than I can say.

home!

Best news:
Clean margins. Clean MRI. Home to heal better.

Extremely tired and drugged but pain meds managing.

It was cancer. Very like original adenocarcinoma from 2006 (i.e it's breast cancer in my brain). Full pathology in a couple of weeks. 

Next treatment will be one dose of cyber knife radiation in a couple of weeks.

I have herceptin mid-December, not sure if anything will change on that front.

Writing is very hard but I am doing well.

More on whole experience soon.

Thanks to you all so much.

i've never liked rollercoasters

Are you sitting comfortably? This is going to be a long one.

In late August, during a regular appointment with my medical oncologist, I was informed that my latest brain scan revealed a tiny spot on my cerebellum, exactly where mytumour was in 2012. I was going to write that I was blind-sided but I really wasn't. There had been lots of little signs over the course of the summer that my balance was compromised. At one point, while I was with my family in New York City, I had stood up and almost fallen over, catching myself against a wall. I'll never forget the very quick glance I exchanged with Tim, before carrying on with my day. A new tumour was something I didn't want to think about and I had fairly successfully succeeded.

“I'm never going to lie to you,” Dr. G. said during our regular phone appointment, before delivering the news. He also reassured me that the spot was tiny and the situation was “fixable.”

I told family via email, as well as close friends that I had a new tumour. We told our kids at dinner that night. I was outwardly calm but inside, I felt devastated. Although I had been reassured that this tumour could be easily disposed of, I felt like it was the begin of the end. If some stray cells had escaped treatment and metastasized so quickly, then others would surely follow. This new spot might be treatable but the next could easily – even likely – be some place treatment couldn't access. I'm so afraid of this possibility that I've never been able to put it into words (I have notes for a blog post entitled “my worst fear” that I've never been able to publish).

A week after this phone call, Tim and I went to the cancer centre for a brief appointment with my medical oncologist, followed by the radiation oncologist who'd treated mewith the Cyber Knife after conventional surgery (we refer to him as the Gallic Shrugger because of his eloquent non-responses when we were planning treatment in 2012). This time, Dr. GS dropped a bombshell: It was possible that the new spot was not a tumour but necrotic (dead) tissue caused by radiation. He told us that necrotic tissue can grow and tends to appear 3-18 months after treatment. He explained that even my wonky balance could be explained away by scar tissue building on my cerebellum.

We were stunned.

And giddy.

I might have had a glass of wine with lunch.

A week after that, we met with Dr. S., the neurosurgeon I liked and trusted so much in 2012. It was hisadvice that we eventually followed for treatment and he performed my nine hour brain surgery. We always wait for hours to see him but it's worth it. This time, he'd shown my scans to several other doctors. He said that while my case was “perplexing” (not something you want to hear from a medical professional), they were fairly confident that the spot would turn out to be necrotic tissue or easily removed by surgery. He suggested that we wait a few more weeks and do another, more precise scan that would also measure activity (which might identify a growing tumour, versus inactive, dead tissue).

Four weeks later, I had the brain MRI. A week after that, I received the good news: my surgeon was prepared to say that the new spot on my brain was very likely necrotic tissue. No treatment is necessary at this point, unless I start to feel unwell. We'll just make sure to monitor for any changes. I heard the good news from all three doctors in separate appointments. Each, endearingly, was practically jubilant.

Oddly, I was not. I was definitely relieved but it all felt anti-climactic. We didn't even celebrate. I felt embarrassed to have to go back and tell everyone that I didn't in fact have a tumour (I know this is ridiculous. This news was extremely well received). Surprisingly (or perhaps not), I mostly felt tired and angry that we'd been put through this trauma.

I'm mostly over that now (but not entirely) and I've trying to immerse myself in the things in my life over which I have some control. Until today, I have not felt able to share this story in this space. I haven't felt much like writing at all. I've finally just decided to spew it all onto the page because it feels somehow dishonest not to have blogged about it.

It's done now.

Time to exhale and move on to the next thing.

it's all official now

Dear Everyone,

I just got the call. I need to be at the hospital by 6:15 tomorrow morning. My surgery is at 8:00am until 3:00pm (gulp). I am my surgeon's only patient tomorrow (the person who called said this like it was unusual). I'm happy to know that I will have his full attention.

I am likely to be on Twitter until they take away my phone. Tim will update as he has info. You don't have to be on Twitter to read updates. You just need to click on the links below:

Laurie's Twitter feed.

Tim's Twitter feed.

I'll be in the hospital for a few days. Once I'm out of post-op and in a room, I'll have wifi access and Tim will bring me my phone and computer. 

If you're in Ottawa and thinking of coming to visit, let me know. Visiting hours are between 3:00 and 8:00pm but I'm only allowed two people at a time, so message me before coming.

Thanks so much for all your messages of support. Each time someone reaches out to let me know I'm in their thoughts, it lifts my spirits.

I am vacillating between a surreal sort of calm and waves of anxiety. I feel like I should be getting ready but I think, for so many reasons, that's hopeless.

I, however, am filled with hope. I am planning my life on the assumption that the tumour will be safely and completely removed with no complications. 

See you on the other side.

love,

Laurie

fun facts about Laurie's brain surgery

I will be having surgery, next Tuesday, November 27.

The exact time is to be confirmed but I will be going to the hospital very early in the am. The operating room is booked for seven hours but some of that time will be bringing me in and out of the anesthesia (I'm guessing at this because the surgeon estimated the procedure would be five hours long).

******

If you don't want to know the gory details, I understand completely. Why don't you go over to Frivolity? It's a much for fun place. Come back any time you like.

******

I will have six different tubes in me in various places in my body. This will be uncomfortable when I wake up.

Surgery to the back of the head is sometimes done with the patient sitting up. I don't know if my surgeon will choose to do it this way.

He will have to cut through my neck muscles to get to the cerebellum.

. 

You can read about the rest of the steps in this very helpful article from Johns Hopkins. The biggest difference is my bone will be tossed and replaced with wire mesh to avoid infection. You shouldn't be able to tell - it won't feel very meshy from the outside.

My surgeon does what his colleagues laughingly call a "California hair cut." He spent time at Stanford University, where they treat many celebrities and try to shave as little hair as possible. It will be nice not to be bald again (also, this makes me like my surgeon even more).

I think I would have liked a few more days to prepare and nest but I'm very relieved to have a date and to be moving forward.

learning to breathe

Last year, when I was diagnosed with a brain tumour and went through surgery, I was fine.

I mean, the surgery was brutal and recovery was excruciating but emotionally, I was mostly OK.

A year later, except for the back of my head (which is a little bit sensitive), I'm fine physically but the emotional part has become more of a challenge. In the last few months, it's become clear to me that I'm only going to work through it all with a little outside help.

So, I'm seeing a therapist. I know it's the right thing to do and I like and instinctively trust the woman I'm working with but it's not easy at all. 

We've talked about how all my life, I've been pretty good at getting along by stuffing a lot of my fear and anger into an emotional closet. This has, for the most part, been a remarkable coping mechanism. However, no door is completely effective at shutting out the bad stuff and, when it leaks out through the cracks, it manifests itself in ways that can take a very large toll on the body and spirit. At this point in my life, my emotional closet is so full of anger and fear that the door is in danger of bursting wide open. 

I'm afraid of losing control.

I'm embarrassed and ashamed that some of it is so ugly.

I'm scared of taking my darkest thoughts and holding them up to the light.

But I think it needs to happen.

I've also been thinking a lot about how I live most of my life in my head, to the point that I'm really quite disconnected from my own body. At my very first session with my new therapist, she pointed out that when I talk about my fear of another tumour or about certain things from my past, I hyperventilate. And I don't even notice.

She spent most of the second session interrupting me and telling me to take deep breaths, hold them and then exhale slowly. She asked me how I was feeling and I said "Impatient."

What I thought was "I'm paying all this money per hour, so I can sit here and breathe? I can do that at home."

Except that I don't. So she's given me homework. I have to spend two minutes a day, twice a day concentrating on my breathing (we started with four minutes but it felt like an eternity).

In.

Out.

Just taking in oxygen. It's so basic. Yet here I am, 46 years old and learning to breathe.

going with doors number 2 AND 3

I've been persuaded to have surgery, followed by targeted radiation. This will be my best shot at getting it all.

I really liked the surgeon we met yesterday. He was patient, clear, forthcoming and took lots of time to answer our questions. I've decided to trust him.

I was feeling pretty devastated yesterday. I was hoping hard that the route I wanted to go would also be the best route. Who wouldn't want the treatment that purports to have few side effects and doesn't involve having your head cut open?

But I went for a lovely walk with a friend and then slept for 11 hours last night. Today, I feel much more at peace with my decision.

Although I'm still a little freaked out.

One cool thing: The surgeon says that if you rate the difficulty level of what the kinds of surgery he does from 1-10, mine will be a 3.

Makes it sound pretty simple, for brain surgery.

"let's hear it for November!"

I get really (and somewhat irrationally) nervous at this time of year. 

I found the lump in my breast on December 2, 2005.

I was diagnosed with liver metastasis on November 24, 2006.

And last November, was all about trying to decide what to do with my brain tumour. I had surgery on November 27.

This is not my favourite time of year.

But Katherine O'Brien left a comment in yesterday's post and linked to this new video that she made. One very good reason to embrace November is that it's no longer Pinktober!

i positively like this

Among the many sentiments that can make me apopletic, the idea that if only women with breast cancer "stay positive", they will be just fine might just get to me the most.

I was pretty damn positive during my initial treatment for breast cancer and yet here I am. I remained postive through my five years of remission (and ongoing treatment) and I was relatively upbeat during my brain surgery, almost a year ago.

I think it's a good idea, generally, not to wallow in my sorrows because it's so much harder to live that way - but I don't think the positive live and the negative die. Not for a moment.

It's natural that we want to believe that survival after breast cancer is within our control and some things certainly are. But not everything. And I think that's why those of us living with breast cancer can make "survivors" feel kind of uncomfortable. We're they're worst nightmare.

There is a real temptation for news outlets and others wanting to highlight the positive during breast cancer awareness month (and at other times) by ignoring women with metastatic breast cancer completely.

katherine O'Brien  (of I Hate Breast Cancer) wrote to a local television station after just such an episode. Please take 5 minutes to watch. Your jaw will drop, I promise.

Click here to watch Breast Cancer Awareness. Stay Positive 2.0

I'm positive that I take great comfort and inspiration from women like katherine and others living with metastatic breast cancer who are not afraid to speak out.

i can tell when it hurts

Having been a patient for most of the last seven years, I can tell how some things have changed.

One thing that seems quite different is pain management. After my mastectomy and my diagnosis of metastasis in 2006, I was given loads of painkillers - morphine, Oxycontin, percocet, Tylenol with codeine and others - all in small amounts. I never finished a prescription and I always brought the leftovers to the drug store for disposal.

Fast forward to my brain surgery last fall. I was fortunate to be sent home after two nights in the hospital (you heal much better at home). The last thing that they sorted out was pain management. I remember a team of doctors standing around my bed. One of them asked, "What has worked best for you in the past?"

"Oxycontin," I replied without hesitation. I never felt particularly high while taking it but it very effectively killed the pain.

Several of the doctors exchanged glances. One shook his head sadly and said, "Well, we'll figure something out."

I was sent home with hydromorphone, another opioid. It certainly diminished the pain and since I'd never had brain surgery before, I can't compare it to anything else. I did think it was odd that they would ask me what worked and then send me home with something completely different.

In less than two weeks, never taking more than prescribed, I ran out. My surgeon is really hard to reach, so I called my family doctor. She simply asked me how many I thought I would need. When I hesitated, she said, "You need to take care of the pain in order to heal. Addiction is the last thing I'm worried about."

My doctor has known me for more than 30 years, so I decided she was probably right. And if she wasn't judging me, why should I judge myself? Sure enough, I took painkillers for the next couple of weeks, and I didn't finish the prescription.

I was reminded  of all this on Tuesday, when I was told that I could manage the pain after portacath surgery, with "whatever you'd take for a headache."

It hurt a whole lot more than that and, in the end, I was glad that I'd held onto those last few pills in the hydromorphone bottle. I took the narcotic for two nights and I was able to sleep. It didn't completely eliminate the pain but it did a pretty good job of masking it. And I only needed it for a couple of days.

I've heard from others who've been through portacath surgery who've said they had more than Tylenol level pain. I couldn't swear to it but I'm pretty sure they gave me something stronger when I had my first port put in, seven years ago.

I don't mean to diminish the horror of addiction and I understand that doctors wish to remain vigilant. However, pain medicine was developed for a reason and I would think that after surgery would be a prime time for it to be prescribed.

My friend Lene has written extensively about chronic pain management, the risk of addiction and the patronizing attitude of many medical professionals. If they wouldn't give a prescription to an adult woman with no history of addiction for just a few days, what must life be like for those who live in chronic, agonizing pain?

There's got to be a better way to address the problems of addiction and pain management. Unaddressed pain costs lives, too.

don't assume i'm wrong about this

My recent medical experiences have made me a bit cranky. 

Today, I called to find out how long it will take to replace my port, since someone has to come pick me up. At the beginning of the call, I clearly explained that I was having my port replaced and that I needed to know how long it would take.

Medical professional: "Are you getting a port or having one taken out?"

Me: "Both."

Medical professional (Sounding incredulous):  "Both?"

Me: "Yes, I already have a port and it has stopped working. I'm having it removed and a new one put in."

Medical professional: "Have you talked to someone about this?"

(This is where Tim, when I was relating this, said, "No, it was just an idea you had. You thought it would be fun.")

Me: "I have talked to C. Many times."

(pause)

Me: "The procedure is already set already set up. I just need to know how long it will take."

Medical professional: "Well, putting in a port takes three hours. Taking one out usually takes half an hour."

Me: "OK. Thanks. I'll say that they should pick me up 3.5 hours after surgery."

Why did that have to be so hard? Why couldn't she just answer me? 

I'm starting to become very annoyed with questions that are pretty much irrelevant to the medical professional involved. Just like the nurse who insisted that I couldn't possibly be on Herceptin, the questioner did not need to know any details. The appointment is booked. I'm having the procedure. Just tell me how long I can expect to be there.

I know this sounds a bit pettty. And I do want to say that 90% of the medical staff I've dealt with over the years have been excellent. I've just lost patience with the ones who don't even seem to try.

I wrote a list of "Do's and Don'ts for Medical Professionals" a few years ago. I know that it's been included in at least one package for medical students. Here's another I would like to add:

Don't assume that the patient is wrong.

Of course, common sense is required here. It's best to double check before running a test or administering drugs. But even that can be done in a way that acknowledges that the patient knows something about her own body, medical condition and experiences. 

When I first met my surgeon last year, he asked me why I had asked for the MRI that found the tumour. I explained that 30% of women with Her2+ metastatic breast cancer go on to develop brain tumours. 

The doctor turned to his student and said, "See? That's why I say we can learn from our patients."

Now, that's what I'm talking about.

a guest at Nancy's Point

It's somewhat fitting that while I'm on vacation, I'm a guest on someone else's blog!

"You have no control over the cards you’re dealt; but there is strategy, experience and skill that goes into playing the game.

I’m a lousy card player."

Please visit Nancy's Point, to read more and to check out this excellent blog. Nancy is incredibly generous in her support of other writers as well as being a thoughtful, interesting blogger and author of "Getting Past the Fear: a guide to help you mentally prepare for chemotherapy."

I'm also giving away a copy of my book!

not as simple as it would seem

As someone living with metastatic breast cancer, I pay keen attention to the development of new cancer drugs. And of course I pay particular attention to the drugs that are likely to one day benefit me.

I have been on Herceptin for 7.5 years. My response was rapid and complete and there is no sign that the drug has stopped working. That doesn't mean, however, that I don't worry about the future and how I will proceed once I come to the end of the line with this miracle drug.

Enter trastuzumab emtansine, or TDM-1, as it was more commonly known. Over the last couple of years, I watched with great interest as clinical trials occurred all over North America. I have been personally in touch with several women who had as thorough a response to TDM-1 as I did to Herceptin. It was very exciting.

Then the trials ended and we had to wait for Health Canada to grant their approval. When that hurdle was cleared, I breathed a sigh of relief. Unfortunately, the sigh was a little premature.

The time between Health Canada approval and provincial funding can be long and complicated. Once Health Canada grants its approval, a body called the Pan Oncology Drug Review (pCODR) assesses the drug, a process that can take up to 149 days. After pCODR makes a recommendation, each province decides if it will fund it. And while this is happening, Ontario, unlike some other provinces "...does not have a mechanism in place that would grant cancer patients access on compassionate grounds to a drug that has been approved by Health Canada."

I heard last week from the Canadian Breast Cancer Network that TDM-1, now known as Kadcyla, has been approved for funding "for the treatment of patients with HER2-positive, unresectable locally advanced or metastatic breast cancer who have received prior treatment with trastuzumab (Herceptin)and taxane". Phew.

[Update: I learned from Delaney (see the comments and the Toronto Star interview) that OHIP funding will only be granted for "second line treatment." Should I need Kadcyla, it will be for third line treatment, as I will already have done my first 6 rounds of TAC (first line) and then the vinorelbine and Herceptin combo (second line). I'm only on Herceptin now but the treatment that follows will be third line. That means I'll only get Kadcyla if my private insurance will cover it. This despite the fact that I have known women who've had Kadcyla as a third line treatment, with great success.]

CBCN is urging voters to contact "local candidates and ask them their stance on improving access to breast cancer treatments." Improving access to cancer drugs is also a goal of FairCancerCare.ca. If you haven't already signed our petition, please do so today. You can also ask your local candidates to sign our pledge to advocate for fair cancer care in Ontario. This is super easy to do and takes almost no time at all via the website.

Meanwhile, I've also heard from CBCN that a drug that crosses the brain-blood barrier is in a phase 2 clinical trial. Will this drug be as effective as it promises to be? Will it be available by the time I need it? 

I'm holding my breath a little.

snarky brilliance credit: Andrea Ross

what it feels like to learn you have a brain tumour, if you are me

I was going through some writing from last fall and I found this. I wrote it, in response to a prompt - "Write about falling" - for an online writing class I was taking. Reading this brings me right back to how I felt when I heard the news that the cancer had metastasized to my brain. I share it now because I think it might resonate with anyone who's every been blind-sided with unwelcome news.

“Your CT scans were fine.”

You breathe a sigh of relief.

“But the MRI revealed a spot on your brain.”

And with those words you start falling. You feel the floor crumble beneath you and the sounds of talking fade as you slip away. You're vaguely aware of you own voice, sounding oddly calm, as the faces in the room grow blurry.

All that was solid rushes by and your lungs gasp for air and yet you move more slowly than you would have thought possible. The room, your spouse, the spot of egg on your doctor's tie, the clock on the wall with the time you had noted (you'd been annoyed that your appointment was starting twenty minutes late) recede into the tiniest of specks and the darkness engulfs you.

Falling feels scary and good at the same time. You are panicked but somehow you know that to fall away from your present is as good an escape as any.

And then a voice cuts through. One you know and love. A voice that has brought you back to reality so many times in the past.

And you land, far below where you started, with a thud.

You pick yourself up, reach back up towards those fluorescent lights you've always hated. And slowly, deliberately, reluctantly, you haul yourself back and to sit in the chair on which you started. You don't know what was said in your absence. No one seems to have noticed you were gone.

You find out later that your head nodded, your lips moved and words came out while you were falling. An appointment was booked, reassurances were made and a promise that a plan would soon be in place.

You remember nothing after the words, “spot on your brain.”

It doesn't matter. You've been through something like this before. Someone will fill you in on what you missed while you were falling.

funny, funny troll spam

Has anyone else noticed a new trend in blog spam? Usually spam comments tell me how brilliant I am, before linking to the stuff they sell. Then there are the ones about sex and related paraphernalia - often gibberish and including phrases like "home coffee maker porn shoes cologne gnocchi". 

Recently, I've had a couple that sound like trolls - accusing me of letting down my readership with laziness or self-pity. This appears to be a new spamming strategy.

My last post, "i don't have a brain tumour",was a photo of a bottle of Prosecco and a glass full of the bubbly stuff. There was not text, as I felt the title and the image were pretty self-explanatory. Before I delete all today's spam into oblivion, I thought I'd share this shining example of incongruous, inappropriate spamming:

"The very next time I read a blog, I hope that it won't fail me just as much as this particular one. After all, Yes, it was my choice to read through, nonetheless I truly believed you would probably have something interesting to talk about. All I hear is a bunch of crying about something that you could fix if you weren't too busy searching for attention. Feel free to surf to my web page: xxxx"

Ha! I'm sorry my celebration was so un-interesting, depressing and attention-seeking.Thanks especially for inviting me to check out your site, even though I'm so disappointing.

Do these links ever work?

I loathe spam but this totally cracked me up. 

i don't have a brain tumour

better than words

A few weeks ago, I took my bike in for its spring tune-up at my favourite bike shop. 

I love getting back on my bike again. I don't drive (which is a whole other story), so riding my bike gives me a sense of independence. Riding has always given me a feeling of freedom and on good days, I renew the euphoria of childhood as I make my way around the city on my own steam.

Also, it's a lot more efficient than riding the bus and really good for my physical and mental health. 

My bike is a tank, weighing in at 42lbs and very solid. I sit upright as I ride it and it feels tremendously safe. However, I managed to tip it over while riding a couple of times last year. This tune-up included a new bell and fenders because mine were broken and they fixed the built-in basket which had been bent out of shape when I fell.

As he was bringing me my bike, the mechanic - usually polite but terse - asked, "Do you have kids?"

Surprised, I answered in the affirmative. 

"Do you lend them your bike?"

"Um..no."

"Because it was pretty banged up. It's usually kids who do that."

I admitted sheepishly that I was the one who had fallen and done the damage. I was tempted to just leave it at that but added, "It turned out that I had a brain tumour that affected my balance. The tumour is gone now and my balance is OK."

Without missing beat, the guy lifted his hand into the air. We bumped fists. I smiled widely, paid my bill and rode home with a light heart.

Some people know exactly what to say - even when they don't use words.

how far i've come

On Tuesday night, I had the privilege to participate in Blog Out Loud Ottawa. This was my third time attending and my first as a reader. I was very nervous.

But it was a wonderful experience. Tim and Sacha (my teenage son) attended as well as several supportive friends (I hope they realize how buoyed I was by their presence). My reading went very well. The crowd was so supportive that they made it easy. It certainly sounded better to me than it ever did in practice.

If you're a blogger and you ever get the chance to read in front of a supportive group - do it!

I read a post called "learning to breathe'" that resonated with a lot of people when I first posted it. It was written last November, a year after my brain surgery. As I said at the beginning of my reading, "...each blog post is a snapshot of my life at the time of writing. If I were to take a snapshot today, it would show how far I've come."

I am more open.

I am more resilient.

I am more willing to face my anxiety.

I am more hopeful.

I am less afraid.

It's a really good feeling to aware of this progress. 

My blogging over the last year has been pretty sporadic. And I'm not sure what the future holds. But I know I want to keep writing. And sharing.

I am so grateful to BOLO organizer Lynn Jatania, to Ottawa's blogging community and to the Writers Festival for the renewed inspiration.

Stay tuned. I'm pretty sure more change lies ahead.

Upate: BOLO has posted links to all the posts from Tuesday night. And look! That's me on stage in my red dress.

national metastatic breast cancer awareness day: my statement

Here is the statement I made at today's press conference (see below for details). Thanks so much to Dr. Hedy Fry for introducing the Private Members' Bill and especially to the Canadian Breast Cancer Network for being a tireless advocate for women living with metastasis.

"Cate Edwards, daughter of the late Elizabeth Edwards has said, 'Before my mom was diagnosed with breast cancer, I assumed breast cancer patients fell into two categories: survivors and those who lost the battle.'

Before my own diagnosis, I would have said the same thing.

I learned I had breast cancer in 2006, when I was 38 years old, with two little kids. Three months aftIer I completed treatment, the cancer had spread to my liver. However, I responded well to treatment and 7 months later was in full remission.

In November 2012, I was diagnosed with a metastasis to my brain. After conventional and cyber knife surgeries, I was once again able to embrace the words “no evidence of disease.” I will be in treatment for the rest of my life and, as there are no drugs that effectively cross the brain-blood barrier, I live from scan to scan trying not to dwell on the inevitability of the next brain tumour. 

This is my story. I have known far too many incredible young women, who have done everything they were supposed to do to be healthy and who have not lived to share theirs. 

Like most women living with metastatic breast cancer, I hate the onslaught of pink that hits us every October. I don't feel that all the talk of “feeling your boobies”, of battles won and lost has much to do with me. Much more relevant to me are clinical trials, drug coverage, quality of life and the long term effects of treatment. 

The prevailing theme during Breast Cancer Awareness month, or as many of us call it, “Pinktober”is “stay positive, get through it and then move on.” For those of us living with mets, for whom moving on will never be an option, the unintended message is that we have somehow failed at having cancer. 

Despite – or perhaps because metastatic breast cancer is stage 4 (there is no stage 5), very little emphasis is placed on metastasis in fundraising or awareness campaigns. The specter of death doesn't feel very hopeful. Yet that is where the emphasis should be. 

While it's true that there has been very little decline in the number of deaths from breast cancer in the last couple of decades, many more of us are living longer. And that is very hopeful. 

It is in understanding and committing research to end metastatic breast cancer that we will really find a cure. Given that, it doesn't seem very greedy to be asking for one day every year."