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Psychosocial support for those with cancer and their loved ones is in a good place. It’s a strange thing to hear myself say because no one wants there to be a need for such things. But as long as there is cancer, there is a need.

Today I am reflecting on BCAM (Breast Cancer Awareness Month) which came and went as fast as lightening and thinking about those with cancer and their loved ones. One month is certainly not enough time to bring focus to the reality of what they are living with every day, and they need constant support and care that speaks to their needs, but also evolves with those needs.

I can proudly say that we’ve come a long way baby in supporting young people with cancer and their loved ones. And by we, I mean Rethink along with our volunteers, professional partners and our friends in other organizations with a similar focus.

There have been many changes and advances in this area and like a parent who grows with their child, support for young adults is growing with the changes that are happening in oncology but also in the way humans relate to one another.

Researching

In general, there is much more awareness that young people can and do get cancer. There have been organizations popping up all over Canada and the US that are helping to spread awareness about their unique needs, provide tailored support and educational tools personalized to them. There has also been a boom in psychosocial research looking at support and future patient outcomes. This is huge because for many years’ healthcare specialists weren’t acknowledging the fact that the trauma of cancer can impact a person’s quality of life for years and years to come. When you are in your formative years of developing your relationships, career and family living with the lingering effects of cancer can be debilitating.

Retreating

These days people have their pick when it comes to finding their cancer tribe. There are adventure retreats like Retreat Yourself, conferences like YSC Summit, yoga retreats like Stretch Heal Grow and there are spiritual experiences like the retreats offered at Callanish Society. A little something for everyone when it comes hanging out with people who are walking in your shoes.

Reconnecting

The days of talking to someone your mother’s age about having cancer are over. Everyone needs cancer friends and peer support is crucial. Not only is it being recognized as a form of therapy by the medical world, peer support programs have evolved by matching people up specifically by age and more importantly, stage of life. There is noting more powerful then speaking to someone who can identify with what you are going through and live it with you.

Retelling

When Rethink decided to forgo front-line programs to offer online connection and community I never imagined how powerful it could be to have women share their stories. There has been a huge shift in the young adult cancer world to online support because that’s where young people are, but first person cancer stories are serving a greater purpose then connecting people to the cause and helping those newly diagnosed navigate the world of cancer.  Blogs, video and online community forums are the newest in self-help models for a younger generation. Story-telling is nothing new in helping people cope with trauma, but a public facing confessional is a great way to crowd source the support you need when you are going through the most difficult time of your life. In some ways it can also authenticate your experience and as the writer Teva Harrison said, “make the dark places less scary.”

Reliving with metastatic cancer

One of the biggest changes to occur in support for young adults with cancer is the incurable cancer movement. I call it a movement because it is a force when you are talking about people like Anna Craig, Judit Saunders, Michelle Riccio, Jasmin Fiore, Emily Drake, Teva Harrison, and Lori Marx-Rubiner. These women are putting themselves out there and advocating for the unique support needs of young adults with stage 4 cancer. Why? Because their reality is different and the conversations that they may need to have are not the same as someone who is “done treatment.”

They are leading the charge so that organizations like Rethink, Cancer Fight Club, Metavivor, YSC, LBBC and many others can create programming, resources and tools specifically for those living with cancer for the rest of their lives. And thanks to the Holly Kitchens of the world, they are also doing it well beyond their days with us and reminding us that we have a long way to go.

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Special shout out of thanks to all of the women and their families who have shared their stories, volunteered their time or given us their thoughts on how to better serve those with cancer. We couldn’t have done any of it without you.

xo Shawna

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June 23, 2009 1:41 PM

Last Thursday I got a call from my surgeon’s secretary who told me that they wanted to try “something else” before surgery & to come in Monday for another kind of biopsy.

So yesterday my husband and I went to the hospital for the biopsy and were totally blindsided when they ended up doing the surgery instead.

Surgery – like public speaking, marriage proposals or math tests – is one of those things I do better at if I’m mentally prepared. I wasn’t, and it didn’t go so well. They operated on me under local anesthetic, which meant I could feel them digging around in this hole in my neck and every time they went deeper I’d feel pain and they’d have to add more freezing. It went on and on, and I would have given anything to have had my husband beside me, but in hindsight it was probably better that he wasn’t. There’s nothing like an emotionally jacked-up and acutely protective Frenchman to throw a surgeon off his game.

After it was all over I asked them to show me the lymph node. It was a little, cute, pink, not-gross, totally innocuous-looking, pea-sized thing. I’ve never hated the sight of something so much in my life. I had the overwhelming urge to smash it with the nearest smashing-tool (those can be hard to find in an operating room) but I knew that it needed to be sent away and carved up and analyzed or we’ll never have peace of mind. So I refrained from Jack Rubying the little @*#$.

On the way home I took the prescribed doses of Ativan and Advil and we stopped for some spicy Salvadorian tacos & sugary Mexican pop. (This combination, it turns out, is an excellent remedy for shock. Keep it in mind should you ever find yourself having just gone through more than an hour of someone digging around in your neck while you’re wide awake.) By the time we got home and my mom arrived with our daughter in tow I had stopped shaking and was feeling pretty “normal.”

Today I feel sore, exhausted and emotional, and like I need to hit someone, (probably the surgeon’s secretary who should have prepared me for the possibility of surgery.)

We could be waiting up to 10 days for results. So the waiting game continues, and it’s excruciating, yes.

But on the upside this could still be nothing more than a bump (lump) in the road

— and if things get too heady I know the Salvadorian taco place is within walking distance.

Rethink is proud to republish the original blog posts of Leanne Coppen first featured by Chatelaine.

October 2nd, 2008. 2:41pm

A lot has happened since my diagnosis back in March.

I’ve had tests – mammograms, ultrasounds, biopsies, MRIs, scans, x-rays and a few things that involve being injected with a radioactive tracer fluid, just in case I don’t already have cancer. 

I’ve had 2 surgeries – a lumpectomy and the removal of several lymph nodes.  I’ve walked around with a drain hanging out from under my arm for several days.  I’ve had a large button-like thing implanted under the skin on my chest with an artificial vein threaded into my jugular to help make being repeatedly injected easier on me.  I’ve had 5 rounds of chemotherapy – today being my fifth.  (Chemo days are milestones marking the progress of my treatment; kind of like little birthdays, except way more frequent and way less fun.)

Through all this I have been treated with great kindness and respect by the people responsible for my care.  I’ve had many occasions to be grateful to my team of talented doctors and to the much-maligned health care system that has made my treatment possible, and more importantly, swift.  I’ve also frequently marveled at the incredibly efficient, patient, strong-stomached beings that walk among us called “nurses.”

So here I am: bald, scarred-up, and routinely pumped full of poisons.  I have trouble sleeping and sometimes I’m very sick, or in a lot of pain.  This is life with breast cancer. The road can be long, dark, and scary – but on the upside I’ve saved a lot on waxing this summer, acquired a French silk scarf for my head, and met some amazing people.   

While not exactly compensating for it, I can see that this curse comes with its blessings.  For me the greatest of these has been watching my family and friends rally around me like a motley army of ferocious angels. 

All these people I love have schooled me on what love can do, and it’s a wee bit humbling.

As bizarre and difficult as my life has become in many ways, I do manage to forget all about cancer sometimes.  I look in the mirror and see Baldy looking back and I’m surprised for a second that it’s me: that girl with cancer is actually me.  Or maybe more to the point, I’m still me even though I’ve got cancer.

That was one of the things that scared me most when I was first told I had breast cancer; I feared that I would lose my identity to it, become That Girl With Cancer. (That, and of course that I’d die.)  My husband and I have a beautiful daughter, a great group of friends, we’re close with our families, and we struggle to balance it all with our busy careers. I liked my life, and I wondered, would all the things that define who I am go the way of my ponytail and ability to keep food down?  

But months down the road and here I am.  Of course cancer and treatment have altered my life dramatically.  Sometimes I’m numb, sometimes defiant, sometimes tearful, and sometimes I just keep moving through the moments of my life as though it’s all perfectly normal. 

It’s become my new abnormal.  But it’s still my life, and whatever changes have come I still feel like myself.  I may not look the way I used to, but I’m not That Girl With Cancer, I’m still me.  Just balder.

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Dear Readers: If you have a favorite photo of Leanne you would like us to publish with her blog, please send to Shawna@Rethinkbreastcancer.com

When Leanne was asked to blog for Chatelaine for the month of October in 2008, about six months into her battle, she was reluctant. She hated cancer’s presence in her life already, without it becoming her public identity—she didn’t want to be Cancer Girl. But she loved to write. Leanne’s greatest gift (among her many) was her incredible artistry with language. Her ability to construct a brilliant, lyrical sentence, nail an argument, throw a perfectly timed witty remark defined her.

The blog presented an opportunity to write openly, frankly and freely about living with breast cancer and it became her voice of refusal to be crushed by the disease. Leanne was determined to live her life on her own terms and not allow cancer to change who she really was. And she never let it do so. It wasn’t Cancer Girl she became through the blog, it was the writer she always wanted to be, reaching thousands, touching people’s hearts, making them laugh, cry and care deeply about a woman they never met. She loved so many things about her life, but in the two years that she fought cancer, her blog, and connecting with its vast audience, was undoubtedly her most personally satisfying accomplishment.

For the next 18 months, Leanne’s blog (Chatelaine’s most popular) became a platform for her wicked humour, for her realities of what it is really like to have metastatic breast cancer, for her love of life and of her husband and baby daughter, for her hopes and her eternal optimism and for her to share the deepest, darkest fears of everyone who has ever been afflicted with this ugly disease. And it became, through her brilliant writing ability, her vehicle to reach out to thousands of people, most of whom she never knew, who were her army of hope. Through their responses to her posts, they strengthened her and they gave her the inspiration and energy to never stop believing that she could, and indeed that she would, survive cancer’s relentless grasp.

Her blog was the book she never wrote. It became her passion. Even on the day she died, she still wanted to write another post for her followers. She would be thrilled to know that her words may be read today by other women like her, young and not so young, who never chose this disease and refuse to become its victims. Her experiences, her emotions, her highs and lows are as relevant today as they were when she wrote them. We are as proud to share them as we are proud of her courage to write them.

And we know she would want you to contribute generously to the work of Rethink Breast Cancer and other similar organizations dedicated to helping others who are as determined as she was to live long and happy lives free of cancer, with love and with hope forever.

Thank you, for Leanne.

Leanne’s family has generously allowed us to republish her blog. Check back soon for the first post and follow along as we share Leanne’s inspirational story and voice with a new audience.

In this “choose your own adventure” Catherine Brunelle, author and blogger, takes you through the experience of being young and metastatic. Press play and learn what it’s like living with metastatic breast cancer.