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?