Our Voice Matters

My name is Barry, and I’m a Leukemia survivor.

It was three years ago that I left the familiar world outside, and began my extended journey into the maelstrom of Cancer.

My experience was dominated by needles, beds, x-rays, gurneys, waiting rooms, personal discomfort and interacting closely with the finest group of people I have ever met.

It was centered right here at Sunnybrook both in the wards – 4 months in C2, 6 or 7 Emergency visits, three extended trips to an ICU, and two years as a weekly outpatient at Odette. I have had thousands of IVs, hundreds of X-Rays, dozens of CT scans, ultrasounds and more than a few MRIs.

I have worked with hundreds of nurses, porters, PSWs, technicians, residents and at least a couple dozen specialists. I have a favourite chair at Odette, and know the lunch staff of Druxy’s by name. It feels like I have been in every ward in the hospital except the Maternity wing.

My story starts simply enough with a routine blood test ordered by my family doctor.

At 8:30 am on the morning after I had my blood taken – I got a call from my doctor “Barry, go to emergency NOW, and tell them to give you a blood transfusion”.

It’s the middle of summer of 2014 – I walk into Emergency in shorts and flip-flops. The resident takes one look at the blood results, calls the staff guy, the staff guy calls the senior staff supervisor, and I am instantly in a room inside.

The doctor says that I have something very serious, but not confirmed. I am admitted immediately and told I can’t leave.

“How long, I ask?”

“At least a month” – He answers.

Then they pour two bags of blood and a bag of platelets into me before they relax.

I have no overnight clothes, no toothbrush, and I am watching the battery on my phone slowly sliding down to 0. Before it goes, I send this litany of text messages to all my family and friends – who are collectively freaking out.

It’s funny the things that upset you under those circumstances – I’m facing all the horrors of the medical unknown, but am obsessing about my phone battery. It was the only thing connecting me to the outside world – a place I understood. Where I used to be in control.

One of the ER nurses, Michelle, takes pity on me, digs through the Lost and Found, and hands me a phone charger. I am saved! She saw what was important to me, and went out of her way to help.

So begins my funny relationship with Sunnybrook and all its denizens.

In my new and alien environment, I had no control over anything, and (at the time) knew almost nothing about the disease, the hospital routines, the drugs, or the equipment. I was poked and prodded by the hundreds of busy strangers.

There and then I made the smartest decision of the entire epic – to make the best of it, interact with the healthcare community, and learn to like being there.

I started introducing myself to everyone involved in my care, asked their name. I nearly killed myself trying to remember it all. But it got easier the more I did it.

I began talking to nurses, doctors, PSWs, porters, technicians, clerks, cleaning staff. I asked about their kids, where they grew up, how they came to work at the hospital, what the hours were like, traffic on Bayview, and what was going on outside. It helped me see them as people. Every one of them had a unique and interesting story. I was fascinated.

There were many times when my new acquaintances identified something important to me and then did something about it. (Like the nurse in Emerg).

They improved my experience, providing it didn't impact someone else, or was unsafe or incautious.

Most importantly, it worked both ways. I became sensitive to the workload and stress of the people around me, and did my best to keep out of the way when outside issues caused plans and schedules to go awry. I never complained about the small stuff. My day-to-day existence became less about “me” and more about “us”.

One of the most meaningful incidents happened after I had been in C2 Oncology about 4 months. I had an infection episode that caused me to spend 7 days in the D4 ICU. As I got better, the ICU prepared to send me back to C2. Unfortunately, C2 was full (as it often is)! They were going to put me in some other strange ward.

Now, I had REALLY liked being in C2 - I knew most of the staff and all the routines, and they knew me. Just being there provided me enormous comfort and reassurance. It was important and meant a LOT to me.

The prospect of banishment to a “foreign ward” was the only time in my 3 year odyssey where I lost my composure. I begged - “Put me back into C2 somehow, anyhow”. I pleaded - "Leave me in the C2 hallway - I would be ok"... but no dice.

The staff were very sympathetic but I had been told over and over that the medical people had no (repeat no) input into room allocation decisions.

On the morning of the fateful day, the attending Doc, and nurse (who I had been pouring my heart out to) in D4-ICU – declared.

"Barry, you know - We don't like the sound of your breathing, and we think, given your history, that you should spend a couple more days with us here in the ICU. It’s a medical decision".

I stayed in the ICU and, 3 days later, a place opened up in C2. Back I went (to my enormous relief).

Someone saw what was important to me, and went out of their way to help. To this day, I am STILL grateful for those actions.

Teamwork is a part of this hospital ethos. Team members help each other out. I worked to participate in such a way that didn’t overburden my caregivers. I tried never to abuse that special relationship.

As a result, I felt more in control. I stopped fighting the non-negotiable stuff and won my fair share of the issues on everything else.

That’s what makes a successful collaboration – when everyone gets to contribute some share of the outcome.

It’s hard to describe the relationship you develop when you share a hugely difficult experience over a long period with great collaborators.

I call it “sharing foxholes when the artillery shells are raining down”.

I spent 3 years dealing with stress, surprises and discomfort, working with a staff who live with stress and surprises daily. None of us is an island.

Cancer is a marathon – not a sprint. Half the battle is just putting one foot in front of the other. Every IV, every X-ray, every blood test, every examination has to be performed, endured, and followed up.

I watch in awe as I see the same staff perform these services over and over with hundreds of patients like myself lined up in queues that never seem to shrink. I watch them do for other people what they did for me.

We beat my cancer and we did it together. I could not have gotten here on my own. And it was much much more than dealing with the heroic incidents.

This story is my attempt at giving something back to all those who worked so hard on my behalf. Those efforts may not have appeared exciting or significant at the time – but it made all the difference for me.

I have pseudo myxoma peritonei and as a result have been hanging around Odette since December 2001. My story is meant to highlight what it can be like to be treated as a person rather than a disease.

When other people describe me they often use words such as, positive, high-energy, enthusiastic, joie de vivre, funny, joyful. (I’m far too modest to say any of those things myself). I am also frequently told that I am a great role model for others who have cancer and that I seem to have incredible strength.

How do I manage to be all of these things, all the while knowing that the squatter that moved into my abdomen 15+ years ago refuses to be evicted? Partly it’s my ostrich, head-in-the sand mentality. If I ignore it, if I refuse to acknowledge it, then it will go away. Partly it’s the personality I was born with, and an attitude that you just get on with things. Partly it’s that I am incredibly stubborn. And the last piece is that I have been extremely lucky and have developed a great relationship with my doctor. I know how hard he works to keep me alive and I do everything I cannot to disappoint him. I know that I matter to him and that to him, I am a person, not just a disease. He believes, as I do, that the quality of my life is of the utmost importance, and all decisions, treatment plans etc… are founded on that belief.

I’m going to back track to the mid 90s. I had my first brush with cancer back then. I had a lump in my breast (a cyst as it turned out), I was sent off to have it out at a different hospital – I can only describe that experience as conveyor belt medicine. I arrived, was prepped, my glasses were taken from me. I then met the anaesthetist. I was asked if I wanted local or general anesthetic. I had to make the decision without my glasses, so without the ability to pick up on any facial or body language clues the anesthetist was giving me, I walked to the OR, had the surgery, was too shy to interrupt the conversation between surgeon and anesthetist to ask if it was normal for smoke to be rising from my body, was sent to recovery where all I wanted was to have my glasses back, and then I was sent home. To them I may have been breast number 462 for the month, for me it was my first medical procedure, I deserved a bit more time and compassion. As a quick aside here, I remember a few things about my time in ICU after my first surgery here. One of the things etched in my brain is my doctor attempting to straighten my glasses for me, I wouldn’t let him touch my them. Thank-you to the health professionals at Sunnybrook for having them on my face before I came to. I also remember a visit by aliens, but that is a different story.

At Sunnybrook I know I am not pseudo myxoma belly number 462 – at the time I was diagnosed only 2 doctors in Toronto dealt with the disease, so I could only have been about belly 19 or so. Nonetheless it would be easy to treat me as an interesting abdomen rather than an interesting person. In a way I was lucky, 15 years ago the Odette was not such a hectic place and perhaps there was more time to establish a connection. My first meeting with my surgeon was in his office, not the clinic. He took the time to explain many different scenarios to me, to answer my questions, to answer my sister’s questions and to make sure I left having understood the discussion. Our second meeting was Christmas Eve – I needed all kinds of injections, and although he may not have administered any of them – he made a point of meeting with me. He also met with my father separately. Even this early on he seemed to sense that I didn’t want to get the in-depth details that my father, a medical man, needed.

What has been right through this whole adventure has been the understanding between us. Thankfully he gets my wacky humour. The minute I start an appointment with “I’ve been thinking…” he laughs, then groans, and usually replies, “oh no, what now?” You have to love a doctor who doesn’t down right dismiss your ideas. I’m not sure why he hadn’t thought of dumping uncooked rice into my abdomen, surely it could absorb all the unwanted fluid, and then be vacuumed out, he listened to my idea of going to Home Depot to look for tubes, and hoses to replace my missing parts. He knows it is safe to make comments like, “No more CTs for you, you’re a 40-watt bulb well on your way to becoming a 60.” He found it funny when I told him that as far as x-rays go I am always tempted to tell them just to turn out the lights, I must glow in the dark by now.

He answers my questions honestly, doesn’t sugar coat things, and the whole way through has paid attention to who I am. I am an elementary school teacher. My job, my students, their families, and the community I work in are all very important to me. He gets that. When he tells me in March that the puddles have changed, and we need to deal with them, he knows that my next question will be, “Can it wait until the summer?” He says yes. When he tells me in June we need surgery, and I say, “But I’ve booked a trip to go see my sister in Paris”, his response is, “Go, get lots of exercise, gain some weight please, and we’ll do it when you get back”. When it looked like surgery might be needed and I asked if it could wait 6 months so I could attend my parents’ Golden Wedding celebration, I was given the okay.

I am listened to and my care plan is developed around what is best for my mental state, as long as it isn’t compromising my physical state too much.

I know that wait times is a hot topic around here. I’ve made my share of wise cracks through the years. My doctor did the Relay for Life a few years ago. I told him I wanted to sponsor him $1 for every minute I had spent in the waiting room, but I would have to win the lottery in order to do so. I do know that to create a positive relationship takes time, more than a rushed 30-second appointment. I arrive knowing I will wait, I come prepared and I willingly wait knowing that once I am in that room I have my doctor’s undivided care and attention (one time I tried to hurry myself up knowing he had people waiting, and was told to say what I needed to say, he wasn’t going anywhere). Waiting is a small price to have to pay to the person without whom I would not be here.

MyChart.ca is a great tool. I love the graphs I can generate of my lab results, it’s the fastest way to find out when my appointments are, and best of all I get to read my chart notes!

Despite the positive picture everyone paints of me, there are times when cohabiting with cancer 24/7 can get to be too much; when I start wondering what it is exactly I’m fighting for; when I start to think that I’ve just had enough, that it would be a whole lot easier to just give up and give in; when I am tired right through to the core of my being, mentally and physically. When that happens I just need to open up any one of the notes that have been written about me to remind me that I need to keep going. The chart notes are not just factual summaries of test results. They include snippets of our conversations – they show my doctor’s joy in my wish to continue living. They mention his concerns but always balanced with incredibly positive, encouraging remarks about my attitude, my strength, my determination and my spirit and also his pride in my achievements. A lot of the notes were written before the advent of MyChart – they were never meant for me to see, which makes them that much more special. With comments like that as I said earlier on – I don’t ever want to let him down, and I inevitably manage to work my way out of my funk, dig deep, and keep going.

I realized instinctively quite a long time ago that for me to keep fighting the beast I need to look after the whole person, to have a doctor who gets that and who helps me live as full a life as possible motivates me to keep doing just that. I also know that I would never have lasted this long without his belief in me.

Words are powerful. The smallest and simplest of utterances can change the course of your life forever. There are the short joyful words that make your heart leap when you hear them: I love you; you’re hired; I do; it’s a boy.

Conversely there are the unexpected phrases that you never expect to hear, that you never want to hear and literally make the bottom of your stomach fall out: you have cancer. No matter how compassionately or gently spoken, this is a phrase that sends even the strongest and most stoic of people into a spiral of confusion and despair. Given the power of such a phrase, it seems obvious that delivery of a cancer diagnosis should always be accompanied by caring, compassion and, above all else, with information and a path forward.

From my own experience and from hearing many patient stories, the worst part of the diagnosis is confusion. By ensuring a medical team is available to fill in some of the blanks and offer tools to help a patient move forward and tackle what is ahead, it can soften the blow and provide a lot of strength and comfort. From my experience, the team at the Odette did just that – and continues to do so every time I walk through the doors.

My cancer diagnosis, in January 2013, was particularly raw and did not exemplify the medical profession at its best. As I came to consciousness in a recovery chair after a colonoscopy, I picked up the paper conveniently left for me and read: severe intestinal blockage; large tumour; certainly cancerous. So there it was – unfortunately with no kind words, no compassion, and very limited information. Just the words in black and white: you have cancer. As a healthy woman in my 40s with no family history of colorectal cancer (or any cancer), this was literally unfathomable. I was scared, terrified really, confused and powerless.

Enter Sunnybrook Health Sciences Centre and more specifically the Odette Cancer Centre. At my first appointment, I met with Dr. Shady Ashamalla, a surgical oncologist with special expertise in minimally invasive surgery for cancers of the lower gastrointestinal tract. Dr. Ashamalla and his team started to fill in some of the blanks around the diagnosis that had left me reeling after the colonoscopy. I was told what it meant, what we were going to do in terms of surgery, what I could do to understand my diagnosis (certainly not Google it) and how to prepare for what lay beyond. Knowledge is power – and nowhere is this more true than in the medical system. The team at the Odette showed me a path forward and frankly this was all I needed to take the vicious sharpness out of the phrase “You have cancer.”

I had surgery about 10 days after my diagnosis – laparoscopically, much to my relief – and was home with my colon expertly re-sectioned within two days. Dr. Ashamalla cleared me to go hiking and do yoga in the desert, which I did while I waited for the pathology. While the results were not what we hoped for, there again was information, a plan, a way forward. I met with my medical oncologist, attended the Chemo for Dummies seminar offered by the Odette to get the gist of what was going to happen over the coming months, went on vacation with my husband and two young boys and came back ready to face the grind that is chemotherapy. With a PIC line inserted, I went the full 12 rounds over about five months. While there were some setbacks and it was a pretty challenging process, the experience remained on the whole extremely positive. Although each visit left me feeling physically pretty beaten, emotionally I felt very grateful and humbled. The doctors, nurses, pharmacists, staff and volunteers were unfailingly kind, positive, energetic and helpful. I could not help but feel supported, cared for and certain that my health and my treatment plan were not just my priority but the entire team’s priority. To have this feeling at a hospital the size of Sunnybrook I think is nothing short of remarkable.

I am not sure any cancer patient is ever told you’re cured, but you do get to hear you’re cancer-free, which are also pretty powerful words.

Some people collect reward points
and travel to exotic places,
Unfortunately, I collect cancer points
and see too many hospital faces.

Recently *
it was told to me
“It is cancer again”.
This was number 3!

It was like
A dagger to my heart.
I thought that I
would break apart.

I was Terrified,
Angry and Sad.
I had to muster
all the strength I had.

10 years had passed
since my last bout
I prayed, “I beat it”
I denied any doubt.

But cancer can be
A wily thing.
There’s always a chance
Of it reoccurring.

Number 1 was
10 years ago. *
It was a life lesson
That helped me grow.

I was given the option
to remove my breast,
But the prognosis was great,
So, I hoped for the best.

“Ductal Insitu
Margins clear
No need to check lymph nodes
So have no fear”

“Lumpectomy, Radiation
is all you need
then your life
can positively proceed.”

Two years later
under my arm
a small rash emerged.
Will this cause me harm?

No one seemed
alarmed by this
but in my heart
it was cancer missed.

Shortly after
the lump appeared.
It was Cancerous
as I had feared.

They removed my lymph nodes.
Then Poisoned me.
It took more than a year
for my recovery.

Cancer liberated my dream
In spite of it all
To be a writer
helping others stand tall.

Still, I became a lab rat
For every test.
I wanted no surprises
in my breast.

Tri monthly Ultrasounds, Blood Work,
Manual exams, Urinalysis too,
Yearly Mammogram, Thermographies.
I was checked through and through.

I hoped that I
would never find
Cancer again, but if I did,
It would be caught in time.

With all this testing
That I did bear
It was the dreaded mammogram
That revealed my latest scare.

INVASIVE DUCTAL CARCINOMA

So how did it happen
that I got this result
considering I monitor myself
to a fault.

I am not a genetic carrier**
But it must be my fate
to be imbedded with Cancer
which I have now come to hate.

I have just lost
more bits of me.
Other treatments to follow
and then I will see.

I could scream and cry
“Oh Woe is Me”
But how would that help
to set me free?

A warrior I’ve become
So, I can survive.
To contribute to the world
and know I am alive.

How do I cope
With endless fear?
Empowerment is where
I tend to veer.

I advocate
for what I need.
“Knowledge is power”
has become my creed.

Specifically, this is
what I do
to help me
make it through.

Laughter yoga.
Great medicine indeed,
Interesting books
that I like to read.

Listening to music.
Taking deep breaths.
Exercising daily
to relieve the stress.

Learning about
this notorious disease,
so, I can make decisions
as I please.

Knowing when
I feel anxious inside.
Then I meditate
and make it subside.

Watching movies, napping.
Having fun with friends.
These are all important
means to an end.

Getting up
Every day
and Believing
I’m in a Better Way.

Being grateful
for the gifts of life.
Trying to live
with less strife.

It isn’t always easy.
I sometimes cry,
But I am human.
I can only try.

I have a life purpose
I must fulfill.
It’s reason enough
To keep my will.

It is a natural response
for us to Fear.
But staying to long
causes depression to rear.

Those who support us
can only cope
when we are strong
And we have Hope.

I try to teach my children
To be resourceful and strong
And that there is always
Someone, something to help them along.

Knowing yourself
Is a powerful tool.
It helps to deploy
This Golden Rule:

‘Life is for living,
So do what you can
To deal with the card
That is in your hand.’

For others are watching
Who need inspiration.
As a warrior with foresight
You will set the foundation.

And then we can hope.
We can pray, that maybe
One day
Cancer will stay away!

*Heather’s first cancer was in 1997. Second cancer was 1999. Third cancer was 2009. It has been 22 years since Heather’s cancer journey began.
**Heather found out in 2017 that she is a cancer gene carrier of Chek 2 after being genetically tested again.

In May 2013, when my husband of 34 years was diagnosed with advanced rare cancer, he did what most patients do when facing a life threatening disease: he vowed to fight with everything he had. And I vowed to fight right alongside him. How exactly, and with what supports, was to be discovered in the year that followed.

When I saw the words TERMINAL and PALLIATIVE scrawled in the oncologists hand on the Critical Life Insurance form, I knew then that Steve and I would not grow old together. I knew that he would suffer terribly.

What I didn’t know, and wouldn’t know until it was too late for Steve, was that the cancer program has a fantastic Patient and Family supportive care program. How I wish the clinic team we met with over the next year had told us that just downstairs across from Radiation treatment there was help to cope with the physical and emotional pain of living with cancer. There was a resource library called PEARL where we could get answers to our many questions, and there were experts available who understood the trauma of a terminal diagnosis and the impact of treatment side effects.

Other than getting help with nutrition issues and drug reimbursement, we did not receive any additional support until the very end of Steve’s life. Despite my pleas directly to his doctor to be referred to palliative and psychological support, it took 10 long and wretched months before being referred.

You see Cancer was not the only threat Steve was facing. As his body betrayed him, his spirit plunged and he became suicidal. Despite doing everything he could to try and fight the good fight with hope, his disease was winning and the horrible side effects of oral therapy were intensifying. His pre-existing depression, once managed on meds, reared up with a fury.

I wish we had been introduced much earlier to palliative care and psychologists with the capacity and expertise to help his quality of life. When we finally got the referral, unfortunately Steve no longer had the strength to talk about how he felt. So I went instead and was hugely helped by the team’s GP Psychotherapist who listened and understood, because my stress was going through the roof as he got sicker and sicker. I remember how surprised I was that she would see me on my own as a family member. I thought you had to be a cancer patient.

Did you know that according to the National Institute of Health,“Caregivers experience a complex array of powerful emotions that may equal or surpass those experienced by the patient during diagnosis and treatment?”

Patient and Family Support services would go a long way to relieving Caregiver distress, improving their skills through knowledge and understanding and ultimately enabling better care for their loved one. And we would feel less alone and out of control during this awful chapter of life.

Caregivers are critical partners in care of patients with cancer. I only wish that my perspective, experience and observations of this man who I knew every inch of far better than any professional, had been embraced as an important piece in helping Steve live the time he had left as best he could.

My hope for the future is that the oncologist organizing the treatment will automatically and enthusiastically refer new caregivers and patients to Patient and Family Support. And that doctors and nurses will continue to do so repeatedly over time.

Because Cancer is a family disease and Supportive care is not fluffy. Nor is it a “nice-to-have”. It is clinical care essential to the wellbeing of the patient and family.

I’ve been a member of the PFAC since September and easily the best part of my participation is the patient story that starts each meeting. Not only does it ground us in the critical work that’s needed each meeting, it reminds us that everyone here is on a journey, and a very difficult one at that. Whether you’re a patient undergoing cancer treatment, or a healthcare worker enabling their successful treatment … Barry, Tom, Mary, John, and others … I’m in awe of you.

I’m neither one of those.

I’m here because in March of last year my wife of 14 years died of breast cancer after an 8-month battle. So while I’m not a patient, I experienced that battle firsthand. Attending every doctors’ appointment, her surgery, chemotherapy and radiation treatments, and every appointment in between where we heard good news and bad about her situation.

My wife’s name was Tory. And it’s her story to tell, and while many of you share the most intimate details of your journey, I can’t do that. It’s not my story, and I need to honour Tory’s privacy.

Why I offered to talk tonight was because throughout Tory’s treatment, she was passionate about improving the comfort of cancer patients. So I’d like to tell that part of her story, if you’re OK with it.

But first, a quick word about Tory. She turned 50 just before her diagnosis. She had beautiful red hair. She had a quick wit, an incredible, twisted sense of humour. She had an army of family, friends and colleagues that adored her. And we have a 14-yr-old daughter, Kate, whom Tory loved more than life itself.

She was referred to Sunnybrook from Ajax Pickering Hospital with the help of her patient navigator, an angel named Michelle Jones, who made us feel like we were her only patient. She called, texted, emailed to make sure Tory was given the priority she needed and to answer the endless questions we had in the most personal way. To us, the Patient Navigator program was a godsend.

Our path inevitably led us to Sunnybrook for a meeting with Dr. Hany Soliman, our radiation oncologist, and his team.

I need to tell you that throughout her treatment, Tory aimed to maintain a positive outlook – even though she sometimes suspected otherwise.

Cancer like most medicine is fairly black and white. There’s a tumour or there isn’t. It’s benign or malignant. It’s metastasized or it’s local or stable. The prognosis is x number of years or months. And most oncologists tell it like it is, in a very direct way. We always appreciated that, but at the same time we wanted them to remember that one patient who they read about or maybe they treated that stared down the odds and survived despite them. Just a small sliver of light is all we wanted, to help keep Tory mentally strong as she was being physically attacked by cancer.

We asked each practitioner to be part of “Team Tory” with the guiding principle that despite all research, blood tests, and all CT scans and MRI results, there’s always hope. There’s always hope.

The path then took us to Dr. Ellen Warner, Tory’s medical oncologist. If you know Dr. Warner, you may know she’s a very warm, caring person. She’s also a no-nonsense doctor – and getting her on board with the Team Tory principles took time.

Dr. Warner prescribed a chemotherapy treatment, and before it started, Tory and I attended an orientation session that many of you did, the one in the auditorium in the bowels of Odette with pictures of the centre that were laughably out-of-date (they’ve since been fixed, thankfully).

Our first visit to Odette for treatment was dizzying. I tell people that despite Tory and me being young-ish, smart-ish and with English as a first language, it was still a maze. And you don’t know the tips and tricks until at least after your first 5 or 6 visits. That appointment is one of the most stressful days of your life, and the last thing you need is even more stress because you don’t know to clip your hospital card to a number to hold your place in line at the damn blood clinic. Or that if you go to meet your oncologist between your blood test and your chemo and forget to swipe your card after, they’ll think you’re still with your oncologist and won’t call your name for chemo.

The last thing I want to do is complain. These are otherwise trivial things. But for a cancer patient, they cause discomfort when comfort is already in very short supply.

Tory’s regimen of chemotherapy, radiation, more chemotherapy, more radiation, a different chemotherapy and again a different radiation aren’t I’m sure unlike the treatment many of you have been through. And I’m sure we can all agree that despite the state-of-the-art treatment provided by Odette, cancer treatment is inhumane. Scars, hair loss, fatigue, nausea, memory loss, depression … It tests the will of even the bravest of souls.

After several rounds of chemo and radiation and with her cancer advancing, Tory’s strength deteriorated. I was no longer able to transport her safely from our home in Ajax to Odette by myself for her weekly chemo treatment. I coordinated a private ambulance – which neither OHIP nor our private insurance covered. With Dr. Warner’s help, we secured her a private room in the treatment area with a bed, and she remained there for her blood test, the waiting period and then her chemo treatment. That too was a godsend. For the first time she found a small amount of comfort. Tory didn’t need to wait for her number to be called, she could sleep, she could relax.

That first appointment with a bed turned out to be the catalyst for another “Team Tory” effort. More about that in a minute.

Tory’s last couple months were the most difficult, as she struggled with mobility, fatigue and the other effects of months of radiation and chemotherapy and advanced cancer. She needed care 24 hours a day and I relied on her close friends – saints, all of them – to help me care for her. The support we received from her palliative doctor, others at Odette and Cancer Care Ontario was incredible. Their efforts weren’t enough to save her, but they’ll always be part of Team Tory.

Since Tory’s death, Team Tory has grown even more.

We set out to honour her by creating a legacy of improved comfort for cancer patients, and started a non-profit, The Tory Day Fund, to enable it. The mandate of The Tory Day Fund is simple: fund programs that improve the comfort of cancer patients. And thankfully, Sunnybrook has been a willing partner.

We came to them with a wish to make a patient’s first visit to Odette less stressful, to perhaps have a “buddy” guide them and show them the insider’s tips that would save them time and stress. Turns out they had been researching just such a program.

We also wanted to fulfil Tory’s wish to have more patients feel the comfort of a chemo bed, rather than a standard chair.

But both those programs require funding. So we started our campaign in June of last year, just three months after Tory passed. We relied on individual donors, fundraising programs, and hosted a bash in October. And in just over four months, The Tory Day Fund raised more than $128,000.

The Patient Buddy Program is now live in a pilot phase at Odette, and we’re in the process of ordering state-of-the-art chairs that allow patients to lay flat and be more comfortable during their chemo treatment.

And our 2018 campaign kicks off this month with a program called Tory’s Table, a set of dinner parties hosted by friends and family where attendees make a donation to the fund to participate. Dollars raised during this campaign will ensure the Patient Buddy Program continues for many more years, and we can buy more comfortable chairs – and fund other programs that improve the comfort of cancer patients. You can learn more at www.toryday.org.

So if we come back to why I’m here at PFAC meetings every month, it’s this: I know how Tory desperately sought comfort during her cancer journey, and we found it occasionally. And with The Tory Day Fund we’ll help others find it more often.

But everyone’s journey is different, and so is everyone’s definition of comfort. The more we continue our focus in the PFAC and at Odette on not only what’s going to improve the treatment of cancer patients – but also their comfort – the better off we’ll all be.

By being a member of the PFAC and my partner in that effort, you’re all now part of Team Tory.

Thank you.

A box of papers

It’s been over a month since we moved from a bungalow to a tiny 1100 sq ft condo. Time to go through boxes of papers we never had enough time to sort. Records of my mother and sister Carlotta’s cancer journeys.

At 27 years old, Carlotta was a newly minted physician when she moved to Canada from Manila to join the rest of our family in the mid 1980s. Decades later, in her early 40s, her journey with cancer would start. She would feel that something was wrong in her left breast area. Her mammogram, breast ultrasound, and biopsy would all reveal nothing at that point. Yet she insisted to her GP that there was something. I recall being so heartbroken when my sister’s second biopsy confirmed breast cancer, stage 3.

My mom and I accompanied Carlotta to the hospital the day she had a mastectomy and her lymph nodes removed. She underwent chemo and radiation, and a hysterectomy and went into remission for almost five years. A few months before the fifth year, cancerous growth was detected in her liver.

Carlotta immediately underwent radiation and the tumours decreased in size. However, within a year, new ones were detected in her lungs. A nasty-sounding cough that seemed to shake her whole being took hold. By this time, she needed a CPAP machine to aid with her breathing at night. Over that one year, her oncologist tried three different chemo drugs that were only initially effective.

It was at this time that my mom was diagnosed with lung cancer.

Carlotta’s oncologist learned that a variation of the first chemo drug she used had just passed clinical trials. Carlotta immediately underwent treatment using this ‘new’ drug, responded surprisingly so well, and was given the go-signal to return to work. But before going back to work, she wanted to use up her remaining months off to travel. As fate would have it, as soon as Carlotta started to get better, my mom’s cancer took a turn for the worse, and she would die soon after. Unlike my sister whose fight with cancer would span a decade, my mom’s battle, from diagnosis till death, was under one-and-a-half years.

The oncologist gave her blessings for Carlotta to travel. But that joy was short-lived. Within months, there was new cancerous growth, and it returned with a vengeance – it was in her lungs, bones, spine, and brain. It was the start of the end.

By this time Carlotta needed assistance in carrying out her day-to-day activities. My siblings and I drew up an excel schedule of who was going to be with her, including the CCAC support workers, so that Carlotta was never alone. On Wednesday evening, I went to bed early so I could be at her apartment early the next day for a doctor’s appointment. I got a call at 2AM early Thursday morning from my nephew who had just moved in with my sister to keep her company at night. Carlotta was asking for me – could I come over, NOW? I jumped out of bed and was downtown in 20 minutes. By this time my sister had already put in a call to her palliative doctor about the dark blood she had thrown up. The doctor gave me very clear instructions over the phone – roll the crushed pill in a drop of honey, and put this ball of medicine on my sister’s tongue. Sounded easy. When that was done, we were ready to go to bed, or at least I was. Carlotta wanted to rest sitting up so she can breathe easy. So, I lay on her bed (what was I thinking?!?) and we held hands. I dozed off. A few hours later I felt her hand slip from mine. I opened my eyes. It was dawn. I looked at my sister, slumped on her seat. No movement. She had stopped breathing.

I phoned 911. They told me to lay my sister down on the floor, and walked me through performing CPR. Shortly thereafter, the emergency personnel arrived. One of them took over while another got the defibrillator going. “It’s no use, ma’am. She won’t respond.”

Why did I tell these EMS people that my sister had stage 4 cancer? Is that why they’re not trying as hard as they would normally have?

“What do you mean it’s no use? You have the equipment, use it.”

“No response.”

“There is no signed DNR!” I said, raising my voice. Revive her!!

They mumbled some technical jargon, showing me the equipment, “See, ma’am? Nothing we can do.”

“Who do you think you are, God?!”

I drove to the nearby church, Our Lady of Lourdes, and asked for a priest to come and bless my dear sister. Carlotta was pronounced dead at 10AM.

Friends and relatives consolingly said how Carlotta is no longer suffering, that she is now at peace, in heaven with our parents. I am sorry, but despite people’s good intentions, I got so sick of hearing this.

I feel fortunate to have been there for my dad, my mom and my sister. I don’t regret using my holidays and personal days to care for them. And I feel blessed to have been with each of them when they crossed the line from life to death. I’d like to think I helped make their passage into the other-life, smoother.

In hindsight, I wish I’d understood more about dying. It felt like a gross injustice was done. Knowing what to expect or to look for in the final days and hours would not only help families better care for dying loved ones, but also help us understand their frame of mind, and prepare us. But who is ever prepared for death?

I looked down again at the box of papers. I will throw it out, not now, maybe tomorrow.

A little over two years ago, my dad had come home from work only to eat dinner, as he usually would, and dropped his plates in the sink. I was at a work meeting at a Goodlife nearby and completing a Masters degree at University of Toronto in Health Services Research. Very fitting place to be in for what’s about to come next.

My mom called me frantic, freaking out about what was going on on the other end of the phone call. What had happened was that my dad had entered a full-body seizure. She tried to help him, only harming herself. She got my cousin (a Syrian newcomer who was living with us at the time) to call 9-1-1 and she described to them what was going on in the meantime. The ambulance came and took him to the hospital right away.

He spent just under a week at the local hospital where there were some imaging tests that were conducted. At first an X-ray was done, which wasn’t clear enough so a few CT scans were done, only to determine that there was a tumour in his brain.

We were transferred a couple of weeks later to Sunnybrook where we met with Dr. Todd Mainprize. One of the top neurologists in the country, who spoke with myself, my mom and my dad about his plans for surgery. He recommended that we do not delay, and that if he was his father, he would schedule the surgery ASAP. So he scheduled the surgery for December 14th, 2016. In this moment we felt that my dad was very important to Dr. Mainprize and that we were treated with utmost care. When you hear about long waiting lists for scans, tests, and other things, we were far from a waiting list and we couldn’t be happier with the care we were receiving.

While all of this was unfolding for my family and I, it was also a time of uncertainty as I had been engaged to be married then and had booked a venue just before my father’s surgery for October of 2018.

The lab test had shown that my dad’s brain tumour was malignant. On January 2nd 2017 he was diagnosed with grade 4 Glioblastoma Multiforme Syndrome. An aggressive, and terminal type of brain cancer.

There was cancer in the extended family but it truly never hit us until it hit us at home. My mind was racing with thoughts and worries as my father’s life was on the line and in the hands of his providers at Sunnybrook.

Thankfully I was a full-time student, dedicated to my thesis and not in class. My mom worked full-time while I provided care to my father during the day.

In February 2017 my dad began his radiation treatments. I used to come to the Odette Cancer Centre and stare at the walls and read up on any information that could be relevant to my dad. My father had lived in Canada for over 30 years of his life at the time, more than he did in any other country, but to me, he is still an immigrant to this country navigating the health care system with many cultural barriers. His English is great, but in terms of education and knowing what is best for him, I felt that this is where I needed to step in.

Anytime we would come to see Dr. Perry, we would be extremely anxious to hear about my dad’s progress or what was going to come next. Seizures were our biggest nightmare, and they would happen so suddenly but not so frequently. In terms of symptoms for GBM, there are many but seizures would worry my family the most because we weren’t always sure what to do - we would always just call 9-1-1 and then do it all over again - go to the nearest hospital. He underwent radiation and started on chemotherapy.

The internet can be a great blessing and a curse at the same time. In the midst of my research on my Masters work, I would also find myself curious about my dad’s condition. I read up on several studies that investigated GBM, reported it’s prevalence, mortality rate, survival rates, etc, and it all was extremely daunting. Most of what I was reading told me that the median survival rate from time of diagnosis was 1.5-2 years. At this rate, I was panicking to think that I was going to be finishing up my Master’s degree, planning a wedding, and possibly losing my father. It became harder to breathe and plan for the future from here on.

At this point my dad was becoming fatigued and could not sit for very long periods of time. He was also started on dexamethasone to help with any swelling in the brain as a result of the chemotherapy treatment. Living a normal life and getting him involved was much more difficult. I was about to be awarded the Gordon Cressy Student Leadership Award at the University of Toronto on April 25th, 2017. Taking him downtown and and making sure we were somewhat close to a washroom was our concern. The steroid was making him have to urinate very frequently and he couldn’t get to the washroom alone. Someone would have to assist him as he started to become weaker.

After the award ceremony, he spent the evening at some friends’ house, where he ended up having another seizure. This left my mom worried about all of our futures. My mom and I would take shifts as caregivers to my dad.

In May, a family friend expressed his concern about my wedding date and suggested that I speak with Dr. Perry about my plans. I asked my dad to step out of the room when we saw Dr. Perry for a follow-up. I still remember how concerned he was about my request to leave.

I asked Dr. Perry and the Nurse Practitioner about whether they think I should move up my wedding or not. He told me that if it were up to him, he would move up the wedding.

That was a whole year and a few months in advance of what my fiance and I had planned for. I had no idea how I was supposed to feel at this moment. Luckily my partner was so understanding about these changes of plans, and we kick-started what might have been the impossible - planned a wedding for 500 guests in just under four months. Thankfully we managed to have my father present and able to walk me down the aisle and also have the epic dream that every girl wishes - the father-daughter dance. It was a moment that I will always cherish, and am so thankful for the chance that I was given, that so many other women are not.

Denise in the Patient and Family Support team is one of the wonders that makes up the Odette Cancer Centre. She would go to all measures to make sure that my dad had the assistive devices he needed, navigated us through what is known as Ontario’s health care system that is under a haul, got my dad set up on palliative care because he was extremely dependent on us.

After two rounds of chemotherapy, we went to talk to Dr. Perry about his recent MRI scan. I had my doubts about the results because my dad had another seizure on April of 2018, which meant that the tumour was not stable again. Lomustine was the chemo he was on at this point, since the first chemo was no longer effective right after my wedding.

Again, Dr. Perry with his graceful approach informed us that he was torn on what to do next for my dad. He said that there was a drug that’s not yet covered by the government. We decided to try it.

After a bout with aspiration pneumonia, we were starting to really doubt that my dad would make it. I began making pre-arrangements with cemeteries and funeral homes just in case anything would happen to him. But of course, Johnny chose to fight through his battles and after returning home from the hospital, a couple of weeks later, was better than ever before. He started to walk around on his own, he wouldn’t need assistance in the bathroom either, and was filled with joy.

Of course he was excited, in a few weeks from that day, he was about to become a grandfather for the first time ever! Not only that, but because he was doing so great, I encouraged both him and my mom to fly him over to California where my sister lives and was going to be delivering her baby. I made all the proper arrangements necessary in case anything happened to him, and we flew together as a family. The only hard part was that the 4 of us had to head back to the airport at LAX (my mom stayed) just as my sister began to deliver her baby. Tough luck! But thankfully my dad’s been hanging in there and better than before (no back pain, no issues, just full of joy) and so his grandson made an appearance to the True North just last February.

Fitting in all the tasks that caregivers witness and have to go through in 10 minutes is a great challenge. Caregiving is an art. It involves emotions, physical strength, patience, spiritual battles, and great sacrifices. I am so thankful to have been able to give the care I have given to my father at an age where I can give him my best and full attention. My mom also needed attention, and thankfully both my husband and I have been able to support them both.

Since we moved my wedding date up a year, my husband moved in to live with my parents and I while the condo we had purchased was underway - it was meant to be. I truly believe that everything happens for a reason. My dad of course suffers the most in this journey. I can’t imagine what it is like to be in his shoes, but he truly is an inspiration. Although he suffers one of the most terrifying types of cancer - which at times he was always unsure what his prognosis was, and was so hard for me to convey to him, he continues to persevere and do whatever it takes to live.

Just last month my dad got his results from a recent MRI, that weren’t very exciting, but he continues to push and live without fear, as he is surrounded by people who care about him. My dad has been very lucky to get this far, and although his treatments have come to an end, and the tumour has grown, we are very grateful for the care that we have received at the Odette Centre. It is a difficult journey for both patient and family members, but together we can fight much stronger.

My husband Ron was diagnosed at the age of 67, with a malignant brain tumor – Glioblastoma IV, in emerg at 10:30 PM Sept. 14, 2016

First thing next morning, we met with neurosurgeon Leo Da Costa at Sunnybrook to quickly schedule surgery. The goal: to remove as much of the large tumor as possible and buy Ron some time. If all went well, he might have 12 months to live.

My otherwise healthy husband’s craniotomy followed the next week.

Surgery went well and Ron healed with no complications. We thought he seemed to have marvelous recuperative abilities so we were encouraged that he might indeed have the year with us.

A month later in October, Ron’s six weeks of daily radiation treatments at Odette, combined with chemo at home, began.

As some of you know from personal experience, when you go to Odette for daily treatment, you get to know your oncology team assigned to you quite well. By team, I mean those practitioners who see you regularly, monitor your progress and on whom you come to rely for honest input and a little bit of hand holding, too.

Ron’s frontline team consisted of four people:

His Neuro Oncologist James Perry, Radiation Oncologist Arjun Sahgal, Nurse Practitioner Claire Moroney and Oncology Social Worker Denise Bilodeau.

Ron’s six-week combined daily radiation and chemo treatment also went well, albeit with not unusual side affects. Following treatment, he had a month off to rest and repair.

Following the month off, on January 2017 Ron had the follow-up tests, MRI, etc., to determine the efficacy of the treatment and next steps. We were relieved to learn the treatment was effective and Ron could begin the next stage of his treatment right away: taking chemo tablets at home one week each month, for the next 6 months.

All seemed to be going OK. But after 3 weeks of beginning the chemo, all of a sudden Ron started going downhill, more than just the possible side affects from the chemo that could possibly be expected. And so an unscheduled Friday morning appointment was set up at Odette to have additional blood work done, and to meet with the team. The test results seemed to be fine, they told us later that morning. No indication of anything unusual. This was perplexing.

It was at this point that I was so relieved to have our dedicated team on our side. Earlier I said that you get to know your team well. But what I hadn’t factored in, is that the team also gets to know the patient and the caregiver well, too.

This was an important factor for us. It was at this point that I said to them, “It’s Friday and if you tell us to go home and relax on the weekend, continuing with the usual protocol, we will. However, you know me well enough by now to know that I have been a clear-thinking 24/7 caregiver for my husband these past months. I think there’s something else wrong with Ron, but I’m not a health care professional. So again, if you tell us to go home and relax, we trust you and we will.”

Here’s the key point I want you to know: the team took me seriously right away & arranged for a fast MRI downstairs. Toward the end of that afternoon they called us in from the waiting room. We were told that the results showed that the cancer had spread to the cerebrospinal fluid. The diagnosis was leptomeningeal ependymal progressive disease, occurring after the first cycle of adjuvant Temozolomide. This would be fast spreading & there were no more treatment options for Ron. We were told to prepare immediately for palliative care and they began the paperwork to arrange for it. And so, we went home for the weekend.

The very next day Ron lost the use of his legs and was admitted to Sunnybrook, where he stayed until he died two weeks later.

I wanted to bring our personal experience back to the work of the PFAC, as part of what we do as a volunteer committee is help with identifying what’s working in support of patients and what might benefit with improvements or efficiencies. I wanted to highlight just how important the dedicated oncology team is, in support of the patient undergoing cancer treatment. And how, in our case, this important dynamic proved effective.

In addition to the life giving medical care I received, including a long aggressive surgery followed by chemotherapy, I also received expert support that has proven to be profound and integral to my healing from an emotional, spiritual, physical and social perspective.

But first let me introduce myself, and share my cancer story briefly…

My name is Laura MacDonald and I was diagnosed in February 2014, at the age of 49, with high grade serous Ovarian Cancer, stage 3C. I am an avid long-distance cyclist. I finished the 2013 cycling season on top of my game, feeling the best I had in years. In fact I completed my last 125km race at the end of September 2013 in the best time I had ever accomplished. Training consisted of cycling 200-250km a week and going to the gym. Needless to say, I was feeling great going into my 50s.

Unfortunately, however, like many women diagnosed with ovarian cancer, I was diagnosed at a late stage. My debulking surgery went much longer than anticipated due to the extent of the disease found once I was on the operating table. I woke up in CRCU and spent four days there, followed by 12 days in the oncology unit. I found out that I was in the hands of two gifted and skilled gyne oncologists, one started the surgery, and the second finished and closed me up.

My procedure included total abdominal hysterectomy and bilateral salpingo oophorectomy (TAH-BSO), omentectomy, ileostomy, appendectomy, splenectomy, partial pancreatectomy, bilateral diaphragm stripping, resection of pelvic peritoneum, and the removal of 17 lymph nodes. My ileostomy was thankfully reversed months later. What relief and freedom that provided.

I started frontline chemotherapy approximately 6 weeks after surgery. Within 10 weeks post-surgery, I lost a significant amount of weight. It was surreal watching myself waste away, becoming weak enough to be blown over by a strong wind.

I asked my CCAC nurse to set up a visit with an occupational therapist, and I started to walk outside again on my own with a walker 8 weeks after surgery. My open wounds healed just before my reversal surgery, 7 months post-surgery.

So where does the Patient and Family Supportive Care/Psychosocial Oncology program enter into my cancer journey? Right from the beginning, as soon as I made contact with the Odette Cancer Centre. Intuitively, I tapped into the resources I felt I needed, when I needed them. I sincerely believe that my health care “team” is multidisciplinary and multifaceted. It includes all involved in my surgery and chemo, as well as the psychosocial team members I connected with. I needed each and every one of these professionals on my team.

I developed a relationship with my dietitian from the very start. You see, within the month before surgery, the ascites built up so fast that I was feeling 7-9 months pregnant. The pain started and got progressively more severe. My appetite was low to nil, I stopped eating solid food, and I was losing weight fast and feeling weak. I found myself bedridden because my torso was so fatigued that I couldn’t lift it up and, even worse, I did not have a clue what to do. My sister-in-law, who has a PhD in Nutrition, advised me to phone Sunnybrook because she assumed that there would be a dietitian on staff to help oncology patients. Well, indeed there was. I phoned a Sunnybrook dietitian for advice on “how to be as healthy as I can be for the surgery”. I followed their advice explicitly. Who knew that I needed 80 grams protein/day, and I could consume that without eating any solid foods? My dietitian did. My relationship with my dietitian has been constant throughout my cancer journey. We have had telephone conversations all along the way…

• After surgery to maximize calorie and nutrients despite having no appetite.
• Dealing with new diet requirements and minimising the difficulty with the ileostomy.
• When the ileostomy was reversed, how to transition into real food.
• Within 10 days of the reversal, I had small bowel obstruction. Once it corrected itself, I was scared to death to eat.
• And now, two years in, chatting about this weight gain!

Another service I tapped into relatively early in my journey, was speaking with a chaplain. I distinctly recall waking up in CRCU, the pain was excruciating (three epidurals hadn’t worked and pain management hadn’t quite figured it out yet). I wasn’t able to move, yet I remember thinking to myself “I’m left here doing the heavy lifting”. I distinctly recall mentioning to the nurse that I could now understand the dialogue around assisted death. I had this experience that I characterise as a spiritual crisis, although some may view it as an existential crisis.

It was then that I requested to speak to a chaplain. Again, an assumption. I have a friend who was a chaplain in a long-term care facility and I just assumed that Sunnybrook, being as big as it is, would have an interfaith chaplain. The chaplain came each day that I was in CRCU, even though I was not capable of talking, having been too drugged and exhausted. He then found me on the oncology unit and had a 20-minute visit with this very gifted chaplain. Among other things, he was instrumental in putting my pending chemotherapy anxiety into a perspective and context that was meaningful and achievable for me to manage. In that short period of time, he learned I was a cyclist who is familiar with training regimens preparing for long rides or races, and he used that analogy of pre, during, and post training to describe how I may view my chemo treatments. My anxiety was lifted…well ok, a significant portion of it.

I saw the same chaplain by chance (well, I believe in divine intervention) on my last day of chemotherapy, just after the IV Benadryl. I was tired and groggy, yet I had the opportunity to thank him and tell him how successful his suggestion was. I took a course later in the fall that he and a social worker facilitated on “meaning making”. I also took his advice on how I could deepen my spiritual journey using the resources available to me through my own faith community.

As my treatment was drawing to an end, I realized I needed to talk to someone. Although it is supposedly an exciting time and my friends and family were ecstatic that “it’s over”, I was in a state of high anxiety and feeling completely overwhelmed by the prospect of my treatment ending. I had a sense of abandonment …“What do you mean I’ll see you in three months with no tests being conducted?” It took a while to understand that logic, since my life had been constant appointments, drugs, consultations, blood work, and CT scans until then. I was losing my full-time job of “treatment” and I was losing the team who saved and supported me. We had been “fighting the cancer together”.

I really didn’t want to burden my friends and family because I sensed they were happy that I was going to get back to being normal. Well, there is no going back. My life was radically changed.

Luckily, on the last day of chemo in July, my friend saw a notice advertising a seminar called “How to get on with the business of living” when at the end of treatment and when to seek help provided by a psychosocial expert such as a psychiatrist. I attended. It was a discussion I so desperately needed at that exact moment in time. All my thoughts, cares, and worries were validated and, more importantly, it provided hope for tomorrow in my newly found independence. I personally felt a connection with the psychiatrist so I asked if she would take me on as a patient.

In a single meeting, based on our discussion, her assessment, and identifying my needs, concerns, and desires, we developed a plan for “how to get on with the business of living”. She also suggested exercise classes, a “brain fog” course, and the Healing Journey all offered here at Wellspring. I had found my new full-time job: “getting on with living”.

I have also met with a Palliative care doctor through Patient and Family Support. Looking at options, planning, and developing advance care plans. For me, I needed to plan and file it all away to get on with living.

I now continue my exercise once a week at Wellspring, in addition to going to my own gym. I have come a long way from the initial goals I set in September 2014 of “being able to push a grocery cart and grow back the 2 cm I lost from being so hunched over.” I finished five 100km rides last summer, one was a fundraiser for Wellspring and the other was cycling PEI. Both were accomplished around the time that I heard I was in a recurrence. In fact, I delayed starting up treatment again to complete the Wellspring fundraiser.

I maintained my relationship with my psychiatrist and she was one of my first calls upon receiving the news of a recurrence. I was scrambling. Again, all it took was one meeting. I left relieved. I had a plan and a new perspective. With her support, I have managed the sense of a dual reality… finding ways to enjoy life and fearing that I’ll die much sooner than later.

Together, with my health care team at Odette, which includes my psychosocial team members, I was able to change my relationship with my fear. I live as full and meaningful of a life as possible. I experience joy daily.

I was fortunate and intuitive enough to find the services that I needed when I needed them. I was resourceful, I took responsibility in my healing process, and I was my own advocate. Sitting in the clinic waiting area, I noticed the diverse demographics of the patients: various languages, various age groups, and various degrees of experience with Ontario’s health care system. I wondered how they were navigating through the system and how they were finding the support services that they (both patient and caregiver) needed.

That is why I joined the Odette Patient and Family Advisory Committee (PFAC). My hope for the future is the sustainable, process-driven integration of supportive care services into the primary care of patients. These are ESSENTIAL SERVICES. I don’t view these services as “support per se”. Cancer care, for me, is whole-person care.

To accomplish this, my hope is that supportive care experts are incorporated into your overall treatment plans and that you help your patients and caregivers get in touch with these services. Check-in to see if they followed up and encourage them again. Unfortunately, we do not always retain all that was said.

You need to routinely promote these services at important transition points: as your patients move through treatment, as the cancer progresses from diagnosis, as the treatment ends, in the event of a recurrence, and at the end of life. I personally found that each stage has its own unique set of trials and issues.

I’m not asking that you become the expert in supportive care, or even to field questions that you may not feel comfortable with addressing. All I am asking is that you point people in the right direction, to the appropriate professional or service. All it takes is a quick “Did you know that we have people who can help with that?”

As patients, we listen so intently to what you say or suggest. Please promote and use the Patient and Family Supportive Care programs for all its worth – every one of your patients and the people who love them will thank you from the bottom of their hearts.

My Name is Orli and I am here to share my experiences at the Odette Cancer Centre. I am a single mother of three beautiful daughters who have helped me see the light through the dark days of my cancer diagnosis and treatments.

In June 2011, after teaching my morning yoga class, I saw my doctor's name on my caller ID and knew my life was taking a sharp turn. After the biopsy, it was confirmed: I was diagnosed with Stage 1 Grade 3 HER2 positive breast cancer. Before the cancer, I lived a very healthy life, teaching yoga classes, eating well, and embracing the gifts that every day brought into my life. This news was a shocking surprise.

During my very first appointment with my physician, I met my care team, my “angels”, who supported me for the next year. I met the breast site social worker who helped me with my fears and anxieties as I faced this new path. A psychiatrist was assigned to help with the many concerns I had regarding survivorship and the ongoing care of my three wonderful daughters. An exceptional nurse was there to answer my questions regarding treatments and my phone calls when I returned home. A reimbursement specialist also helped me organize my finances and find a way to pay for the very expensive medications supporting my treatments. A pharmacist even called me two days after treatment to make sure I felt comfortable with the medication I was taking.

At the front of this exceptional crew was my physician. With her loving and caring heart, she always took time during our appointments to listen and support in any way she could. She always elaborated on the trust that I would survive and be healthy again. I am grateful for having all this care put in place. I deeply believe that without this care team, I would have been lost.

After my treatment had finished, I needed help with post care. I didn’t know how to return to a life without treatments and ongoing support. I was now a different person; my skin was painfully new. My physician referred me to see another psychiatrist who has helped and supported me ever since. She and I have many long talks about hope, faith and the fear of recurrence.

I am someone who always turns all the stones upside-down to find the answers. It’s just part of my personality. However, not every patient at Odette may be as resourceful as I was. They may not be able to find the help and support they need, or they may be too tired and scared to seek answers. Often, cultural differences can stand in the way.

For me, the biggest challenge was the long wait time before my weekly appointments. I would come with many questions, but by the time I came to my appointments, it became difficult to stay alert or motivated. I, therefore, decided to use these long wait times to seek answers. I frequently went to the PEARL education centre. It was sad to see that many of the books and videos were dusty and had not been used by others.

I think a lot of people don't realize what they can access here at Odette, from educational materials to supportive staff to Wellspring. I found all of these services on my own, because I was curious and I benefited from them. I want others to know about these resources so they can benefit too.

Cancer is not just a physical illness. It touches us to the core of our being. It touches us on an emotional level and it changes our family dynamics. It forces us to change, listen and accept our new realities. It is important to address all of these levels when you come to care for a cancer patient. The patient has to feel support around not only their tumour and physical body, but their whole being. It is essential for our survivorship. Throughout my cancer journey, and still today, I know that the emotional support I received helped to lift my spirit in dark days.

I am here today asking you to continue to care and support cancer patients in this way and to let you know how important and essential your work is. We are truly complex and wonderful beings that need support on many levels of our existence in order to heal and survive.

I thought I finally received a positive turning point with my health when a new doctor asked me to go to the local ER to get my serious bout of appendicitis treated. That was after months of ushering myself from one doctor visit to another, for what appeared to chronic stomach pain and fatigue. The doctor gave me a special note for the ER nurse. It worked wonders. I skipped most of the line and found myself in a hospital bed within the hour.

It was a huge relief that I could finally, and possibly, start a new day tomorrow without abdominal pain. I realized that may be wishful thinking when the surgeon completed his assessment, and looked at the others and said; “this is not appendicitis, send him for an ultrasound”. Okay, back to square one.

I knew things would take a turn for worse when the ultrasound paddles were placed on my abdomen. The technician’s face changed to an expression of horror. She immediately turned the monitor away from my line of sight and continued pressing buttons on her keyboard without uttering a word. Within 15-minutes of completing my ultrasound, I was ushered away to a CT waiting room, without explanation, and was asked to drink oral contrast over the next hour.

The CT explained the expressions of horror on the medical team faces. Their silence finally broke and they handed my diagnoses. “You have a very large mass in your abdomen. It’s about the size of your head. It most certainly appears to be a cancer.” What could I say? My wife sat there sobbing. I felt I should say something. All I could muster up was, “Well that explains why my belly hurts all the time!”

My diagnosis changed from irritable bowel syndrome, to appendicitis, to cancer. You can imagine that my trust in the medical system was weak by now, and that I needed to find a new medical team for my two heads.

If we try hard enough, I suppose we could find a silver lining for almost any situation. My silver lining is that I am fortunate to be telling you this story, almost 8 years later, and that my faith with the medical system has been restored, thanks to the team at Sunnybrook.

I was introduced to most of my care team on my very first visit to the Odette Cancer Clinic. What made the difference to me, and my family were the words: “We know what to do, here are the next steps, and this is what we need from you…” Finally, we had an action plan.

I participate on the PFAC team because I want everyone to have person-centered care. Let me explain what that looked like for me at Sunnybrook:

1. I had a surgeon who called me “brother”, and kept checking in with me and the team on the right time to plan for surgery.

2. I have a medical oncologist who smiles at the beginning of every visit, explains our plan in detail, and suggests how to get more information on my cancer.

3. I had a nurse who cared enough to bring me a bottle of orange juice during my appointments because I eventually became anemic. She wanted to see me drink it before I went off on my long drive home.

4. I had a hematologist who would call me once per week to review every detail of my bloodwork

5. I had a pharmacist who sat with me while I waited to see the doctor, and just talked to me about stuff. He insisted that he accompany me during my visits so he knew what changes to make to my oral chemotherapy regiment.

6. I had a drug reimbursement specialist who laughed with dismay after every new form I brought her, and that my insurer deemed necessary.

I had six people handling my care, and they were all very visible to me and my family caregivers. They explained everything, they respected my anxiety and questions, they provided the proper handoff and continuity to each other, and they demonstrated their expertise with large doses of humanity. They fixed me, removed the alien head growing in my belly, and taught me the real meaning and value of teamwork.

Who am I: I am a 63-year-old man, diagnosed with aggressive prostate cancer when I was 59 years old.

I want thank to all the Health Care Professionals and volunteers involved in my diagnosis and treatment. Everyone was both friendly and professional.

What is the purpose of my story? I want to try to help Health Care Professionals, future patients and caregivers to see and feel the diagnosis and treatment process through my eyes and mind. Hopefully sharing my experience can improve the experience of future patients. I recognize that doctors have very little time so future solutions must not increase the demands on doctor time.

I will share a few of my experiences. The following is not a chronological story.

Experience #1 How to make a decision regarding treatment.

I was told that 50/50 chance of being alive in 5 years (I immediately applied for Canada Pension Plan) with a full range of treatments. I felt that the treatment approach would really change my hope for long-term survival. My oncologist talked about radiation treatment. My surgeon talked about surgery and gave me mountains information to read. The vast bulk of the information was for patients who did NOT have aggressive prostate cancer.

I was then asked for my treatment decision. I felt like I was going into McDonald’s and selecting from a menu. Except I didn’t understand the words on the menu and the long-term implications.

I didn’t know how to make a decision, what process to use, or what decision-making criteria to use. I did not find anything in the material I was provided (or online) regarding an approach to decision-making.

My wife and I came up with a criterion: what treatment approach maximizes the chance of living the longest, ignoring side effects. Then we received an immediate recommendation from surgeon — start with surgery, then radiation (if required), then hormone treatment after radiation.

My surgeon spent several seconds telling me that the nerve enabling erection will be removed. This has a huge long-term impact on my life. My surgeon told me a few years later than there is an option for creating an erection – an injection into my penis by needle, by my wife or me.

Surgeon said there will be incontinence. I had to wear pull up diapers for a few months, changing several times a day. When I left my home, I needed to take my pants off in a toilet stall to change my pull-ups. Thanks to physiotherapy, my incontinence almost disappeared over time – good news.

What would be a better experience for future aggressive prostate cancer patients?

1. The doctors could outline two treatment approaches: live longest versus live the best quality life. The doctors would have a one-page chart treatment options, long-term impact on survival and life quality, and long-term patient experience.
2. Doctor’s assistant would provide a “package” of cancer information, relevant to aggressive prostate cancer – or email a pre-packed collection to patient. This would include relevant patient stories.
3. I don’t know if a patient who is diagnosed with aggressive prostate cancer should immediately apply for CPP. Should I have immediately applied for CPP? How should a future patient decide?

Experience #2 How to make a decision regarding a second treatment.

My cancer came back after the surgery. I was told that needed radiation before “it’s too late”.

I was given two radiation choices: radiation and lots of radiation.

How could I make a decision? There were no statistics to enable decision making. I was told that lots of radiation has more side effects. Once again, I use the criterion “What maximizes the chance of living the longest, ignoring side effects”, thus lots of radiation.

I was told that incontinence will likely become worse – at this point my incontinence was almost “cured”. What did my life look like with worse incontinence? Changing pad several times a day. Sometime my pads overflow and leak into my pants – that made for some incredible business meetings and well as social events. Always having extra pads when leaving home. Wearing what is a “penis clamp” to reduce incontinence.

What would be a better experience for future aggressive prostate cancer patients? Similar to what I described for the initial diagnosis of aggressive prostate cancer

1. Doctors outline two approaches: live longest, live best quality life. Doctors have a chart with possible approaches on it,
2. Doctor’s assistant provides a “package” of cancer treatment information, including relevant patient stories.

Experience #3 How to deal with stress

At the time of initial diagnosis, I was told that I had 50/50 chance of being dead in 5 years with a full range of treatment. My stress went way up. There was no discussion before surgery regarding stress or how to deal with the thought of imminent death.

After my surgery, I got positive news from my surgeon. The cancer appeared to have been contained within the removed prostate. There was no need for radiation or hormone treatment. WOW what a relief! I was going to live and not die shortly.

Then my cancer came back. My surgeon referred me to my oncologist who said I must start radiation “before it’s too late”. My stress went through the roof!!!

During radiation, my oncologist mentioned (a few seconds) that there was a psychiatrist experienced with prostate cancer patients available to help with stress. I am so grateful to the oncologist for mentioning that. I asked for a psychiatrist – the result was truly life changing! During the course of radiation treatment, I was regularly asked if my stress had gone up in the previous two weeks. I always said “no”, because my stress was already at 15 out of 10. My stress was through the roof.

What would be a better experience for future aggressive prostate cancer patients?

1. Oncologist or surgeon tell the patient that when cancer comes back, people often get very stressed and there are some options which help with the stress.
2. Keep following up with the patient and ask about stress levels compared to pre-diagnosis.
3. Doctor’s assistant shares relevant patient stories.

Conclusions

1. Health Care Professionals and volunteers are truly excellent at diagnosis and treatment of aggressive prostate cancer.
2. The words used by Health Care Professionals and volunteers as well as the treatments themselves can have major long-term effects on the what the patients feel, what they have to do (or cannot do) in their daily lives, and how they interact with their caregivers, family and society.
3. Stress and its implications must be proactively discussed and dealt with – don’t leave it up to the patient.

In November 2015, a subgroup of Patient and Family Advisory Council (PFAC), proposed a service to help improve the experience for new patients at the Odette Cancer Centre. The initial intention was for either a staff member or a volunteer to help patients and caregivers navigate their first visits and to raise awareness of Odette services for new patients.

The Odette Patient and Family Education (PFE) team was brought on to assess the needs of new patients, explore strategies and provide recommendations. Findings suggested that new patients arriving for their first appointments felt overwhelmed. Some felt lost, anxious and confused by the initial check-in process, or by the various things they needed to do while there, such as symptom screening, blood work, tests, scans, etc. Some patients wandered around looking for help. Working in collaboration with several stakeholders, the Patient Buddy Volunteer Service was created with the goal of improving patient experience by providing better access to information and navigation to Odette patients and families.

In November 2017, with the support of the Tory Day Fund and Sunnybrook Foundation, along with four existing Odette volunteers taking on an additional volunteer role, the pilot began. I began volunteering as a patient buddy in the fall of 2018. Today there are nine patient buddy-dedicated volunteers, all helping patients navigate and adjust to their visits at Odette. The program is supervised and supported by the PFE team. Most patient buddies have a cancer experience. Although many of us are already familiar with the system at Odette, we were trained extensively to help ready us for the work.

How the program works

While the volunteers seated at Odette’s north entrance information desk field all manner of patient and caregiver questions as they enter the building, the patient buddy volunteers are mobile, meaning that we are able to move about anywhere throughout the building to assist patients. Taking as much time as necessary, we can proactively help unaccompanied patients navigate through their appointment and treatment journey at Odette.

Buddies wear the standard blue Sunnybrook volunteer vest. We carry a clipboard with us at all times. It contains some of the basic info we may need to give out, covering some of the most-asked questions. It also contains forms that we fill in each time we interact with a patient or caregiver. Every entry we make details how much time we spend with each person, the nature of their questions and how we responded to their needs. The forms are collected by the PFE team.

Our goal is to help any patients or caregivers navigate the system, escort someone to appointments, listen supportively, answer questions, or connect them with health information and services.

You’ll often see us near the Main Reception area when there are long lineups of patients waiting to check in. While standing in line some people become anxious, so we talk with them to help ease their anxiety. If it’s their first visit, they may have many questions, and we provide answers. If they are ongoing patients, perhaps they’re not feeling well and we can help them manage.

Example of a Buddy in action

There was a particularly long line up for Main Reception that extended to the information desk at the north entrance. I was working with patients standing in the line, answering questions and trying to help ease anxieties while they waited. I came to a man standing with the assistance of a cane. I could see he was a bit uncomfortable. I asked him if he had any questions today. He asked me how long I thought he’d need to stand in line before being able to check in. I said it could take some time and asked him if he thought he was able to stand, or if he would like me to stand in line for him so he could sit down. He welcomed this and sat down in the waiting area nearby. While standing in line, I was able to speak with other patients standing in front and behind me. Engaging with them, I was able to accomplish a lot, answering their questions and easing anxieties.

When I got close to the front, the man slowly walked over to check-in. I held his cane while he interacted with staff, got his ID bracelet on and received his instructions on where to go. As he had to do symptom screening, then pick up an injection prescription before his doctor’s appointment, I asked him if would like me to accompany him and use a wheelchair. He turned down the chair, but welcomed my accompanying him. I helped him to screening, and then to the pharmacy, got him seated, and stood in the line at the pharmacy prescription pick-up desk.

This is just one story. There are so many more, each and every day.

Impact

In the program’s first year, 2,274 patients and/or caregivers were helped by buddies. Several staff, volunteers, patients and caregivers have commented on the success of the program.

With the continued support and funding from The Tory Day Fund, we hope to help many more patients and families navigate and adjust to their visits at Odette.

It was the Summer of 1992. I was 7 years old. I loved Ninja Turtles, Ghostbusters and having fun with my younger sister, Mom and Dad at our family cottage on Manitoulin Island.

On Canada Day long weekend in the summer of ‘92, my Dad was diagnosed with a brain tumour, Glioblastoma to be specific. He was 32 years old. I don’t remember much from this time given that I was so young, but I do have a few very distinct memories. My Mother is an incredibly strong woman. She took on many roles during this time - wife, mother, caregiver, advocate and supporter – the list goes on. She spent her days getting my sister and me to and from school; then running up to the hospital to be with my Father, never missing one of his appointments or treatments. We lived in Sudbury at the time and unfortunately there was no MRI available. My Mom and Dad had to travel to Ottawa for MRIs, leaving my sister and me with our Grandma.

Surgery first followed by chemoradiation. We didn’t get to see our Dad that much, which at the time was very difficult for two young girls to understand. We had short visits at the hospital when he was feeling up to it. There were times during his course of treatment, where he was well enough to have short stays at home. On his last stay at home, I remember him turning on the Righteous Brothers’ record and dancing with my sister and me – me on his feet and my sister in his arms. At that point he knew he didn’t have long with us, so he told my Mom he wanted to dance with us because he would miss the Father Daughter dance at our weddings. On October 31, 1992 – my Mom dressed my sister and I up as presents for my Dad and brought us up to the hospital to trick or treat. This is my last memory. Shortly after, on November 10th, my Dad passed away.

Life changed; I changed. I grew up quickly – playing and watching Ninja Turtles and Ghostbusters no longer seemed so important. I have been told that the most challenging experiences in our life - our crucibles – they shape us and provide us with purpose.

My Mother told me many stories about the Australian Radiation Therapist that treated my Dad. My Father was young, scared and had a family depending on him – treatments were difficult. His incredible Radiation Therapist had a new story to share with him at each treatment to provide distraction and get him through this challenging time. My Father developed a fond relationship with this Radiation Therapist. I wish I could have met this man, but these stories are what inspired me to become a Radiation Therapist myself. Yes, at a very young age I knew what I wanted be and I was determined. The thought of being able to build relationships with my patients, seeing them on a daily basis during treatment, helping them and their families through one of the toughest times in their lives, was all the motivation I needed. In 2014 I graduated from the University of Toronto and was a Radiation Therapist – a very rewarding, personal and professional accomplishment.

The years following my Father’s death my family dedicated their time to getting a MRI in Sudbury, so that patients didn’t have to travel to have their MRIs forcing them to spend time away from their families. It was not an easy task, but after five years of petitioning and fundraising – Sudbury received an MRI ensuring access to all Sudburians. This desire to ensure equal access to essential technologies and therapies for all patients lives inside me to this day.

While studying to become a Radiation Therapist, I had the pleasure of being introduced to Dr. Arjun Sahgal. I had the opportunity early on, while still a student, to learn from him and participate in various research studies. His drive and passion is infectious. For the past five years, I have had the incredible opportunity to manage the Cancer Ablation Therapy program with Dr. Sahgal. One component of the program is the clinical implementation of the MR-Linac at Odette Cancer Centre – a Canadian first. We have done considerable amounts of research and developments through the years working towards treating the first Glioblastoma patients on the MR-Linac. In 2019 we anticipate treating the first Glioblastoma patient on the MR-Linac, a system that will allow us to adapt and tailor treatment for our patients. As you can imagine this will be another significant accomplishment both personally and professionally. With the clinical implementation of the first MR-Linac in Canada – this stays true to my drive to ensure patients have access to state-of-the-art treatments. I am absolutely honoured to have the opportunity to be a part of the incredible team at Odette.