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patient stories

Updates on our Support of Mental Wellness After Melanoma Diagnosis

In the summer of 2017, Save Your Skin Foundation conducted a patient survey seeking insight on the emotional and psychological impact of a melanoma diagnosis, in order to expand on our personal experiences and to learn how we may be able to help improve support systems for patients and survivors across Canada.

Since the release of the report from that survey (click here to read the report), we have developed a poster for display during our upcoming attendance at the 12th Annual Canadian Melanoma Conference (February 2018). This poster is titled:

THE AFFECTS OF MELANOMA ON THE MENTAL WELLNESS OF PATIENTS, AND THE LANDSCAPE OF MENTAL HEALTH SUPPORT IN THE CANADIAN MELANOMA COMMUNITY

We welcome the discussions that the information in this poster will inspire, and we will continue to bring voice to the challenges that are faced by those who are touched by melanoma skin cancer.

To read the poster we have created from the survey results, please click on the image below to view it in PDF format, in which you will be able to zoom in on the small text and graphs.

The survey was conducted in English using the SurveyMonkey online platform. It was also made available in French for Quebec residents. The English survey was open from August 21, 2017 to September 25, 2017; the French survey was open from August 28, 2017 to September 25, 2017. There were 28 participants in the English survey, and 19 in the French survey. French to English translations were largely performed by our in-house translator, Danika Garneau. The English and French results are combined for the purpose of this project. The poster will provide an overview of the survey results.  For any feedback or questions, please contact natalie@saveyourskin.ca.

To view the complete survey responses, please click here:
Save Your Skin Foundation Mental Health Survey 2017 – English
Sondage sur la Santé Mentale de la Fondation Sauve Ta Peau 2017 – en Francais

Stay tuned for updates on our work in mental wellness and self-care after cancer diagnosis. 

 

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Holiday Melanoma Patient Support Webinar

Join our Holiday Patient Support Webinar on Thursday, Dec 28, 2017 at 1pm PST | 4pm EST.

All patients, family members, and caregivers are invited to join this informal, free webinar to share and connect with patients and survivors across Canada.

Click HERE to register

Save Your Skin Foundation knows the importance of having a good support network during difficult times. This is why we had the idea to organize a support group by Webinar. Since we are scattered all over Canada, we thought it would be a good idea to be able to talk to people and hear them, but in the comfort of your own home. Founder Kathy Barnard will be available to discuss, along with other members of the SYSF team. Whether you’re a patient or a caregiver, we hope that you will take part in this virtual discussion around melanoma, treatments, and hope.

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The Save Your Skin Foundation Story – A Niece’s Perspective

You may have read the Save Your Skin Foundation’s story on the Foundation’s website here…but, as you probably know, everyone has their own story – and Founder and President, Kathleen Barnard’s niece has kindly shared one of her own. Thank you for your inspiring and beautiful story Taylor!

“In May of 2003, I wanted to be an astronaut; a pretty common dream for a child of ten. A less common aspect of my “studying” to be an astronaut was that it was all practical. On any given night you could find myself and Kathleen Barnard – my aunt, neighbour, and favourite person in the world – on her back deck, drinking hot chocolate while I pointed out constellations to her. Also in May of 2003, Kathleen was diagnosed with stage three malignant melanoma.

Melanoma is the most aggressive form of skin cancer, the result of a life spent outdoors. For Kath, this was often on a baseball diamond, either playing or coaching the team of myself or one of her two sons. The cancer manifested itself in a tumour on Kath’s arm, the size of which my family (myself excluded, as I was ten and oblivious) had been watching anxiously. Upon hearing the news, I can assume that Kath was as flawlessly optimistic as she has been every day since. I can confidently say that the only hope or happiness any of us had in that time was in watching Kath’s determination to beat the disease, and her strength has inspired all of us to be stronger in our own lives.

The first form of treatment Kath would undergo was Interferon, which involves a self-injection three nights a week for a year, accompanied by the side effects of hair and weight loss, and flu-like symptoms. Not a process for the faint of heart. Here, I should mention that I was only told about Kath’s illness after she had begun receiving treatments, when her physical changes were going to become too obvious to ignore; the fact that I had no idea that this was going on before she told me, demonstrates how strong she was, continuing to live her normal life by going to work and continuing to coach my softball team for as long as she could. After her year of treatment, we received the news that she was cancer free, and all of us, Kath especially, looked forward to resuming our normal lives.

A year later, in the May of 2005, one of Kath’s checkups revealed a tumour on her lung. Not only had the cancer returned, but had advanced to stage four: the most aggressive stage. This time, Kath underwent Chemotherapy. I was growing older and more terrified at the prospect of losing my aunt, and my life essentially consisted of crying in bed, then crying in my mom’s bed, then getting up and crying at school. Kath’s attitude, however, juxtaposed all of ours; she hosted family dinners and trips to Whistler, getting us all together as much as she could. She would always have some surprise up her sleeve, such as bringing a collection of children’s musical instruments to make a family band (I’m not joking), or Christmas crafts for us to do in Whistler. Even while there was talk of removing her entire lung as the tumour grew, and as her cancer metastasized to her kidney, liver, bones and ribs, she never lost her smile, or showed us how exhausted she must have been.

After extensive and desperate google searches, my cousin found a Doctor in Edmonton who was running a trial drug called Interleukin. The drug had showed positive results in 16% of trial subjects at that point, and no one had yet survived the entire treatment. The trial required Kath (and another member of our family-her husband, one of her sons, or my mom) to fly to Edmonton every second week to spend the full week in intensive care, receiving the drug though an IV every eight hours. While I never went with Kath (though I donated all my pocket money to her flights!), I gathered that the side effects of this treatment included nausea, weight gain, a rash, and low blood pressure. To help herself persevere through the treatment, Kath would write something on each bag to inspire her: things like the names of her family, friends, the girls on my softball team, future vacation destinations. She never complained; on her tongue instead were a million reasons her fight was worthwhile.

After four rounds of Interleukin, Kath was finally declared to be in remission. However, instead of trying to push the thought of cancer out of her mind, Kath and her amazing sister (and my mom) Rosemary decided to start the Save Your Skin Foundation. The fact that you are reading this anecdote right now proves that Kath’s enthusiasm paid off, and the foundation is successful. The Save Your Skin foundation seeks to promote the prevention of skin cancers, such as melanoma, via education and awareness. It also helps provide families struggling with the disease with personal and financial support in finding trial drugs. In short, the Foundation tries to prevent other families from going through what our own family did.

Unfortunately, the struggle was not over for Kath. In 2007, a CT scan showed the presence of a tumour in her small intestine. It was stage four malignant melanoma again, and Kath was immediately hospitalized and given an invasive surgery to relieve the pressure on her intestine. Her surgery and re-starting treatments did nothing but increase Kath’s drive to make sure the Save Your Skin Foundation was a success. She began putting together a Save Your Skin booth at local events, run by our family and friends, to get the Foundation out there as much as possible.

By February of 2008, Kath was flying back and forth between Edmonton and Vancouver again, but this time every twenty-one days and to receive the new trial immunotherapy Yervoy. She had been given four rounds of Yervoy when a new tumour was discovered in her kidney – an organ that she had to have removed in January 2009. After countless late night tea and creamsicle runs, it was over. That surgery, and January 2009, marks the date when Kath’s real remission began, and she has been cancer free ever since.

Since 2006, Kath has worked tirelessly to help the Save Your Skin Foundation grow, and I am pleased to report that it is now an international organization. Along the way, Kath and Save Your Skin have helped so many families who are lost upon receiving their diagnosis. A look at the ‘Survivor Stories’ and ‘Memory of our Friends’ section of the SYS website demonstrates how much amazing work Kath and Save Your Skin has done. I have truly never seen someone so passionate about their work, which is even more impressive when this person should be exhausted.

I am so honoured to be involved in such an important organization, so proud of my aunt, and so endlessly thankful that she’s still here with us. Though I no longer want to travel to space, I’m very grateful that Kath and I are still able to drink hot chocolate on the back deck and look at the stars.”

Thank you again for your story Taylor!

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I’m Living Proof Connects Melanoma Patients and Survivors

When Save Your Skin Founder Kathy Barnard was diagnosed with Metastatic Malignant Melanoma in 2003, the first thing she did was look to the internet for anything that would inspire optimism for her prognosis; hopeful news, survivors, or treatment options. She didn’t find much.

From this experience was created the “I’m Living Proof” initiative and website, intended to provide a wealth of information, resources, and support to those touched by cancer, while also connecting patients and their families to a community of survivors who have shared their stories. This initiative was borne from Kathy’s desire to ensure that those diagnosed with melanoma know that surviving melanoma is possible –“I’m Living Proof”.

Visitors to the site are encouraged to read participating patients’ stories, and they are given the option to connect with these patients via a secure form privately shared between the Save Your Skin Foundation team in collaboration with the person wishing to connect with other patients or survivors.

An interactive map serves as a method for patients and survivors to reach people across Canada and around the world.

 

On the map we use stars to represent survivors; we do this to inspire everyone already diagnosed, and those who will be diagnosed, to reach for the stars because there is hope for survival. Those of us surviving melanoma today are living proof of that. We also hold stars close to our heart as we remember those we’ve loved and lost to melanoma. These individuals are our stars in the sky, which is why Save Your Skin donates an actual star to the family of every melanoma patient we lose with a connection to the foundation.

To give you a bigger and better interactive map for which to connect with other patients, we have moved the former I’m Living Proof website to be housed right here under our very own SYSF site. Click HERE to see the map!

 

Please feel free to check out our map and click on the stars in locations across Canada to read the stories and see videos of fellow melanoma survivors.  If you feel you would like to speak with one of these folks, you can fill out a quick form and we will send your request to the person you wish to meet via email.

If you would like to share your story and join our support community via a star on the map or otherwise, you can click here to fill out a quick form to let us know you’d like to be in touch.

Tell us a little about yourself!  And what you think about this program.  We are here to help: Hand in hand we fight melanoma together. 

Welcome!

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Celebrating National Cancer Survivors Day with Patients Who Know: #CancerChanged

Diagnosed with advanced melanoma in August 2015, Lyall Woznesensky has learned that every minute of every day is precious, and he thanks his family and friends for their care and support through his cancer experience.

In time to celebrate National Cancer Survivors Day on Sunday, June 4, 2017, four Canadian patients living with advanced cancer are sharing their stories to help bring awareness to the hope for survivorship that is more accessible in this day and age, due to innovative new medical treatments.  Through documentary-style photo essays, a new campaign called #CancerChanged will bring to life these stories, to highlight hope and survivorship through the lens of Canadian award-winning photojournalists.

 

#CancerChanged gives an authentic glimpse into the lives of people living longer with advanced cancer to foster hope, understanding and peer-to-peer support.  This series of photographs, anecdotes, and video interviews will be shared in the coming days across social media channels, and through the networks of oncology patient organizations which are part of the collective called CONECTed.

“This is a time of change and a time of hope. Cancer patients have been dreaming about hope — and now hope is real.” said Kathy Barnard, Member of CONECTed steering committee and President and Founder of Save Your Skin Foundation, the patient advocacy group that has led the creation of CONECTed.  “New advances in cancer treatment have changed the outlook for many cancer patients. This extended phase is what we call survivorship and it poses new challenges such as how patients transition from a terminal diagnosis to a redefined ‘normal’ life embracing quality time and hope.”  See press release here

Lyall is open about his experience since learning that he has advanced skin cancer, “It’s all about trying to help others if I can in any small way,” he says, candidly, of his participation in #CancerChanged and bringing awareness to melanoma in general.  Recently Lyall was a guest panelist on a webinar hosted by Save Your Skin Foundation: Living Beyond Cancer.  Click here to watch the webinar.

To see more of Lyall’s impactful story, please see his photo essay below.  To see all of the #CancerChanged stories, please visit the #CancerChanged website here.  Click here for more information about CONECTEd, and to read about National Cancer Survivors day, click here.

Lyall was also interviewed for this article in the Winnipeg Sun: Former Bomber Finds Perspective in Cancer Fight

And here:  “The Woz” jumps for joy after tackling cancer, Saskatoon StarPheonix.

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