22 Years of Service to Young People with Cancer - A Video Diary

Super Social Butterfly

I knew from a young age that my life was to be used to support others.   When you know you will never have children, it can devastate you or you can choose to see the opportunities it will open up.

I attended a camp for children with cancer - called Camp Oochigeas (now just Camp Ooch) and became a counsellor. I had many happy summers at Ooch. When you are a survivor, you form very close bonds to other cancer patients and survivors. 

It's a wonderfully natural bond which lasts a lifetime.  Those who haven't had cancer often described having what we called, "cancer envy" because they wanted to be part of this exclusive club.  Sounds really weird to say that but there is no doubt that those of us who have had cancer and lived through it, view life differently. We are angels on this earth, knowing that we have a message to share. 

I nurture my child within.  Some call it Peter Pan Syndrome.  I am deeply connected to my playful side.  My wise 10 year old self.

When I decided to relocate to New Zealand, I wanted to spread the love and share my life and experiences with the young people here.  Once again I've had a richness of experience volunteering with CanTeen for 9 years. 

I am not just a volunteer.  I am a pioneer.   I am a role model.  I am a mentor.  I am a behind the scenes  ambassador.  I am the face of cancer and I am the heart of what it means to survive and to make a difference to others.   But I do it for love and out of love.  I've spoken about the importance of giving to charity.  I feel very fortunate that I am able to give my time so freely.  As I've said before;  my "job" pays the bills but charity work fills my soul.

Volunteering has been my greatest "work".  Time is more valuable than money.  You can make more money, but when time is spent, it's gone forever.

And just look at how rich my life has been.  I can't wait for the next 22 years.

A Letter to the Man Who Fought to Save My Life

Today my friend Sarada (her little boy Luke and her family are on their journey through cancer as we speak) posted a TEDxWaterloo video on her facebook page of my childhood oncologist speaking about the difference between "Curing and Healing".  It brought back so many memories and emotions as I watched this man - who fought so hard to save my life - speak about things that touched a very deep and painful place inside of my heart.


I decided to write to him.  I'm not even sure his email address is the same so I thought I'd share my letter - like a letter in a bottle thrown out into cyberspace.

Dear Dr. Greenberg,

I hope this email finds you well.  I wanted to write to you to say thank you.

Camp Ooch July 2002

The last time I saw you 10 years ago I was afraid.  I had just been diagnosed with malignant hypertension (do you remember?) and I was so scared that I was going to die young of a heart attack.  That summer at Camp Ooch, you said something to me that resonated so deeply.  You told me to live my life to the fullest because you never know when it could end.  You spoke from years of painful experience.  I know you were concerned about my health and the damage on my organs after the aggressive chemotherapy I underwent in 1985.  But since I was a pioneer of these trials, the evidence wasn't certain and I sensed you were holding back.

Every year has been a blessing and a gift.

Looking on with pride.  One of my fav shots.

Giving massages at camp.

The following year, I moved to New Zealand in search of something I didn't know at the time - I came here to discover the core of my own personal strength and determination.  I took life for granted, restlessly searching for happiness.  I was an unhappy person surrounded by a family who, as you so eloquently put it in your recent TEDx talk - were not healed.  None of us were.

Your TEDx talk was brilliant.  I was moved to tears.  It reminded me of the day we talked about my mom and her struggle with alcoholism.  You asked me, "And how is your mother?"  I sensed that you worried about her and it was time to ask, I needed to know.  "Dr. Greenberg, did you know that my mom was drinking heavily while I was sick?"  You dropped your gaze from my eyes and said, "Yes, we suspected she was."  I was a bit shocked.  I asked, "Why didn't anyone DO anything?"  You explained, "Times were different then.  There wasn't the support like there is today.  She was all you had and she was in grief."  I didn't know what else to say.  That conversation plays over and over in my head.

If only you knew how much I wished someone else would adopt me.  I didn't understand what she was going through because I didn't realize the magnitude of my illness.  No one told me.  I can see it a lot more clearly now, a maturity of compassion and understanding. 

I needed to separate myself from my unhealed family to realize it.  To find my own path instead of living my life trying to live up to impossible expectations and what I felt was "judgment".  I reminded them of tough times.  My life was a constant reminder of "cancer".  The more I spoke about it, the more they shut down and pushed me away.  I didn't understand why, but now I finally do.

It wasn't easy.  Moving to New Zealand nearly broke me.  But as we both know, life isn't meant to be easy - it's meant to be lived.

In 2007, 20 years after my first diagnoses with ovarian cancer, I got another ovarian tumour.  I was scared again.  This time I was alone.  I didn't have my team of doctors or my close friends around for support.  I was in a foreign country with different ideas of medicine.  I contacted Dr. Laperrierre at Princess Margaret Hospital to ask his advice.  He advised me to have the radical hysterectomy but to avoid HRT due to my family medical history.  I think I contacted you as well to let you know what was happening.

My surgeon and GP in New Zealand told me that they would not go ahead with surgery unless I promised to take HRT.  More fear.  I was taking a cocktail of prescription medication: beta blocker, calcium channel blocker, ace inhibitor, water pill AND aspirin to try to control my blood pressure - which wasn't helping.  I was getting sicker, gaining weight (which they said was a normal part of "aging") and had no energy.   Then they added synthetic HRT which I knew my body didn't like.  I gained another 5kg. 

Two years later I had an epiphany.  I was being ruled by fear and I needed to get strong enough to take charge of my body (just like I did when I was a determined 11 year old).  I KNEW what was missing - trust and love - in myself and in others.

My sister had tested positive for the BRCA gene so I went to speak to my doctor about my concerns with HRT.  I haven't been tested for the gene and didn't know if I wanted to know.  The doctor said I should be tested immediately.  I said, "And what if it comes back positive?"  She said that the responsible thing would be to have my breasts prophylactically removed.  I burst into tears.  I just had a radical hysterectomy at the age of 32 and now she wants to take my breasts?  I walked out of there and never went back.

You may not agree with my decision but I stopped ALL the medications COLD TURKEY.   I found a Homeopathic GP who guided me through (she did not advise me to stop it all at once, that was my decision) and reassured me that I would NOT die. 

That was 5 years ago.  I began practicing yoga daily and got a personal trainer to help me lose the 10kg I gained.  Slowly, my body began to regulate itself.  The fear began to dissipate and I felt better than I had in years.  The damage to my organs has been done but that doesn't mean I have to spend my life taking pills does it?  I'd choose quality over quantity any day.

Last November I thought I should see if anyone in Canada is looking for me.  As you recall, I was being followed up yearly at Princess Margaret as part of the Clinical trial in 1985 to track the long term effects the chemo would have on my body.  It's been 9 years since I've seen a specialist. 

I contacted Ovarian Cancer Canada and they were so happy to hear from me all the way from New Zealand.  They told me that they were going to be taking a group of ovarian cancer survivors and supporters to climb Mount Kilimanjaro in September 2013 and told me that they'd love it if I could join them.  I said YES without hesitation.  This is right up my alley. 

So I've been training and preparing for second hardest climb of my life to summit the highest free standing mountain in the world.  We both know I can do it.  I'd love it if you were part of my cheering section. 

I wanted to share this with you because I know it will make you proud. 

This is the video to explain what I'm doing.  YouTube Video click here

This is the ending to a very long chapter in my life and I also feel that it is the beginning to another, very different chapter.  I bring a message of hope to those who have been told there is none.  That's my life's mission.  So please feel free to follow me on this journey.  I'm on facebook under Tracy Pepper's Expedition of Hope.  I'd love to know you were watching.

Thank you for the impact you've made on my life and my heart.  I know that doctors are not meant to form personal relationships with their patients - it breaks the code of ethics.  But as you said in your TEDx talk, we are losing "connection" in medicine today.  The most important thing is LOVE.  Without it, we have nothing.

This is the link to my story.  You might find it interesting.  Tracy's full story click here

I am in a good place.  I have a wonderful life.  Your care cured me 29 years ago and I want you to know that  healing does happen, sometimes it takes a lot longer than we wish it would. 

You'll be happy to know that everything I do involves connecting - with myself and with others and helping them do the same.  Watching you speak inspires me to continue doing my work and living life to the fullest.

Sincerely and with Great Love,
Tracy xo

P.S.  I'm proud of you for speaking the truth and for sharing it with the world.  Happy Father's Day.

"When we seek to discover the best in others, we somehow bring out the best in ourselves"         

William Arthur Ward

Me and Dr. G in 2002 at Camp Ooch

The Dalai Lama was visiting New Zealand this week.  I'm disappointed I didn't get the chance to hear him speak.  He wrote this on his facebook page tonight:

When young we have a vivid sense of basic values like trust and warm-heartedness, which we tend to neglect in today’s competitive world as we grow up, yet from birth we all have a need for affection. The emotions we experience today have not changed much over the last few thousand years, but the interest increasing numbers of people are showing in their inner world and how their emotions work is a sign of maturity.

Volunteering for Young People Living With Cancer

I've been a volunteer with CanTeen, an organization which supports young people living with cancer for 9 years.  I've seen a lot of changes in those years.  When I first came to New Zealand I got in touch with the Auckland branch and filled out all the necessary paperwork.  My first volunteering experience was with the Hamilton/Waikato branch in 2003 on their winter camp.  At the time CanTeen was small, with a few members scattered around the country.  I'm not sure of exact numbers but I do remember that volunteers were few and far between.  

A few years later, the numbers were growing and more staff were hired to fill the demands.  I moved to Mount Maunganui and became the only volunteer for the Tauranga branch.  I was on the committee for two years and I got involved in as many activities as I could.  I attended National Camp in 2009 where I got to meet CanTeen staff from across the country and connected with even more CanTeen members.  It was an amazing week.  Unfortunately I hurt my foot and almost got sent home.  I made a huge fuss to ensure that I stayed, hobbling around on crutches.  I argued that there were CanTeen members there with disabilities so what sort of message would I sent out if I gave up and went home.  It made total sense to me. 

Then life got busy.  CanTeen was growing even bigger and more staff were needed.  A position came up which I was encouraged to apply for but at the time I was going to be in Canada for 3 months.  They hired someone else and more volunteers came on board and suddenly I wasn't involved like I used to be.  Like everything in life, things start to change.  I focused more on my business.  But I missed being a bigger part of CanTeen.  

The lovely Charlie

Last year that same job as a Member Support Co-ordinator came up in Tauranga.  I decided to apply even though I had a zillion things on my plate at the time.  There were hundreds of applicants and the job was given to an energetic youth support worker originally from Yorkshire.  Her name is Charlie and she is absolutely perfect for the job.  Things happen for a reason.   When I first met Charlie, I liked her instantly.  We're quickly becoming great friends.  CanTeen is incredibly lucky to have her.  

This past weekend the Waikato/Bay of Plenty/East Cape had their Summer Camp and I was invited as a volunteer to help out.  All of the staff and volunteers were pretty new.  I was the veteran.  I believe change is good.  It's great to get some new energy and new insight.  Of course there are always going to be adjustments to make and growing pains to deal with.  When you're dealing with teenagers, they are going to test their boundaries on the new staff.  For the first time, I had to be the tough guy on a few occasions.  It was actually a role I took to surprisingly well.  Once we sorted out some issues, the camp was amazing.  The food was great too.  Lots of healthy options.  Great to see.  I never understood how anyone can consider feeding cancer patients processed food.  Organizing a camp for 50+ teenagers is not an easy task.  Kudos to the staff.  I have the easy job as a volunteer.

The sub-committee greeting the members

This year's summer camp was probably one of my personal favourites.  It was amazing seeing the older members standing in leadership roles.  I've watched them grow up over the years and they make me feel so incredibly proud.  CanTeen offers these young people so many incredibly amazing opportunities.  The lucky ones embrace the chance to better themselves through workshops on team building, peer support and learning to deal with grief.   CanTeen is putting some amazing young people out into the world with some awesome life skills.  It's such a great organization for that reason.

Camp Oochigeas 1991

I'm naturally good with the members.  I get right in there with them as I have always felt like one of them.  I guess in many ways I am.  I was a Teen Linker before the term was invented.  I've been involved in cancer organizations since 1985.  I started a program in Canada in 1992 to offer support to young people in my community who had been diagnosed with cancer and didn't have anyone to talk to.  I held school assemblies and spoke on their behalf to address misconceptions and to share my own personal story.  I was like the bridge everyone needed to reconnect after the big "C" diagnosis.  It was a great service and I'm proud of myself for doing it.  Then I went off to study Massage Therapy and I dropped off the cancer scene for a few years.  

Two memorable Ooch Campers

It's cool to dress as a super hero

In Canada I volunteered for an organization called Camp Oochigeas (now known as Camp Ooch).  It was founded in 1985 the year I was diagnosed.  This is another organization that has grown and changed exponentially over the years.  It went from being a small week long summer camp for cancer patients, from The Hospital for Sick Children in Toronto based on Lake Rosseau in the Muskokas, to a year round camp program.  It is run entirely by volunteers who give up their holidays (in Canada most people only get 2 weeks off a year) to donate two weeks of their summer to be camp counselors.  The training is second to none.  We have to undergo a full weekend of workshops and training each year before camp starts and complete our CPR and First Aid.   At Ooch they offer onsite chemotherapy so that even the sickest child can attend camp.  It is just for cancer patients.  Their motto is, "You only fail if you fail to try".  There is a huge emphasis on inclusive programming.  Every camper is encouraged and expected to give something a go, even if they don't think they can do it.  All activities are modified to allow even the disabled campers to get the opportunity to attempt it - even water skiing!  The volunteers are AMAZING people from all sorts of backgrounds.  Their enthusiasm is infectious and with their encouragement and support, the campers are willing to try anything once.   During those two weeks there is a strict "no phoning home" policy.  Mobile phones are strictly prohibited.  Campers and parents are not allowed direct contact.  There is strong evidence proving that campers often improve both mentally and physically when they are surrounded by their peers and separated from their family role as the "child with cancer".  At Ooch, cancer becomes "normal".  It's incredibly empowering for these kids.   It also gives the parents a much deserved break from the care giving role.  The separation is often harder on the parents than on the camper!   It wasn't uncommon for kids to go home after 2 weeks at camp like totally different people.  Parents are often amazed.  A child might come to camp in a wheelchair, terrified of leaving his parents and then when they pick him up after two weeks, his wheelchair is packed up with his bags and he's bouncing up and down telling them about the activities he's done and showing them the rock climbing wall he scaled.

Best Ooch summer camp ever

In 2003, Camp Ooch were able to purchase their own piece of land with their own private lake in Muskoka.  They created a brand new camp and now offer winter camps and a multitude of other opportunities for young cancer patients to experience the magic of camp.  That all happened the year I left Canada and got in touch with CanTeen.  Full circle.  

Both CanTeen and Camp Ooch have so much to offer.  Camp Ooch is incredibly run and the camps are very organized and structured.  CanTeen is much more laid back.  It is for cancer patients, siblings and bereaved siblings.  The programming is run and lead by the CanTeen member Sub-Committee.  The staff don't really get involved so much as they are there to support and make sure things are done behind the scenes (ie. food, transport, accommodation and arranging activities).  One big difference which I would like to see changed is the fact that CanTeen members are given a lot of slack.  They aren't pushed to give something a try, if they don't want to do something, they don't have to do it.  I disagree with that.  I think that if someone wants to come to camp, they must be "happy campers" and make an effort to try all activities.  Most teenagers think everything is lame until they TRY... and then they are often surprised at how cool it was.  

Past Oochers turned Camp Counselors

Canadians know how to do camp.  That's for certain.  Kiwis are a bit more laid back and less enthusiastic about things.  People who entertain here often say that Kiwi audiences are a little flat.  That's not to say they don't enjoy it, but they just aren't enthusiastic like North Americans are about things.  I think that's why CanTeen members love me so much.  I get involved in everything and I'm not afraid to look silly or act younger than I am.  I'm setting an example and being a camp role model.  I know for a fact that some campers have been totally inspired by me over the years.  So for that reason I will keep bringing my Canadian flair to CanTeen events for as long as I can.  The adults might look at me funny but I'm doing this for the members.  :)

Nick with attitude!

One CanTeen member stood out for me this past weekend.  He was a young man named Nick who is severely disabled as a result from the type of cancer he had.  I'm not entirely sure what it even  was but it might be safe to assume it is brain related.  He is very unsteady on his feet and his speech is badly slurred.  To the untrained eye you might assume that he is mentally disabled but that is definitely not the case.  He is as sharp as a tack and he was out to prove himself this weekend!  He made such a huge effort to make sure that people knew that he was able to participate in ANYTHING.  He played the "get to know you" games and through his slurred speech he was incredibly articulate and even funny most of the time.   One of the new volunteers commented that his clumsy walking made her really nervous and asked if perhaps we could prevent him from walking around aimlessly.   Good luck trying!  He's incredibly independent and wants to do it all himself.  If he falls, he gets back up and keeps going.  You have to treat him like he's just like the others.

One of the weekend's activities was Rock Climbing/Absailing/High Ropes Course.  A few of the other members sat it out, preferring to hang out with their friends.  That's when I got annoyed.  They weren't even supporting the others who were giving it a try.  You'd never see that at Ooch.   Those who wanted to participate got into their climbing gear and went through the orientation with the staff who volunteered their day to do this for CanTeen.  Nick came up to me asking if he could try.  I got him into a harness and helmet and he patiently waited his turn.  

The man who was in charge was a bit sceptical.  He thought maybe Nick might be able to climb up the ladder of the absail and that would be fun for him.  But Nick wanted to do it all.  First we tried the rock wall.  The rocks were a bit too small for Nick to grasp but I got in under him and pushed him up as high as I could so that he was sitting on my head (no wonder my neck is sore this week).  Nick roared into fits of laughter.  He thought that was absolutely hilarious.  He said he wanted to absail.  So when it was his turn, he charged right up to the ladder and started to climb.  That boy may not be able to walk in a straight line on the ground but he can climb vertically with ease.  In no time he was at the top of the wall and then he absailed down.  AGAIN!  He said.

At the top

He did it again, faster and with more confidence than the first.  The man in charge was amazed and a bit shocked I think.  Never underestimate a person's abilities.  I was so proud of Nick, not just for his personal accomplishment but for changing the way a few people will think of others with disabilities.  

Nice work Nick!

Nick wanted to do the High Ropes course next.  For this you have to climb a pole and then about 10 meters up there are two wires.  One to hold onto above your head and the other to walk across like a tight rope.  Nick was fearless.  Watching him up there, you'd never know that he was so unsteady on the ground.  He seemed perfectly still and comfortable in the air.  His body is incredibly strong and when given a task using small motor skills, he is focused and steady.  It was a beautiful moment seeing him up there like that.  I shouted at the others (who hadn't even stopped to notice that Nick had done the high ropes), "Hey everyone, look at Nick!  There's not a single person in this camp that can't do this."   

Determined to get up to the ropes course

Nick was my hero that day.  I remember when I first met him.  He was so strong willed and determined then but he was less talkative - more of a doer.  He bulldozed his way through everything and got easily frustrated (probably because people couldn't understand him).  He's grown a lot since then.  He seems to understand how other people see him and realizes that he has to be patient too.  He's been working on his speech and he's determined to get people to listen to him.  He'll always be a bulldozer but that's because he won't stop.  He'll have to spend his life proving that he can do anything.

Nick sliding himself across the wire with precision

This is why I volunteer.  It's moments like that which make me look at my life with a whole new perspective.  It is my life's purpose to be there for people like Nick.  To listen, to understand and to know that they are not limited by their disability.  I always come home from camp feeling like my heart doubled in size.  It's exhausting physically and mentally but I feel completely energized.  I get so much more out of my volunteer work than I think I contribute sometimes.  I absolutely love being a part of these young people's lives.  And I feel incredibly blessed that they think so highly of me too.

This must be what true love feels like.  

Another highlight was seeing this girl - Emma Ferry-Parker.  She is effervescent.  She is wise.  She is multi-talented and good in anything she does.  This is a song she wrote for me.  And the wonderfully talented Charlie who is doing an interpretive hoop dance demonstration as she sings.  This video makes me smile.  I feel so incredibly loved.  How lucky am I?