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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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Melanoma Patient Support Group Webinars

All patients, survivors, family members, and caregivers are invited to join these informal monthly webinars to connect with other patients and survivors across Canada.        Join one or all three:
Thurs, February 1, 2018
Thurs, March 1, 2018
Thurs, April 5, 2018

5pm PST | 8pm EST

We know the importance of having a good support network during difficult times. This is why we decided to organize a recurring support group by Webinar. Although melanoma patients and survivors are scattered all over Canada, these webinars will allow them to talk to others going through similar experiences from the comfort of their own home.  Founder Kathy Barnard will be in attendance, 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.

CLICK HERE TO REGISTER

Within 48 hours of registering for this webinar, you will receive an email from natalie@saveyourskin.ca providing you with the link and dial-in details for this group call in gotoMeeting. You will be able to choose if you wish to share your webcam with all participants, or participate in call-in mode only.

Thank you, and hope to chat with you soon!

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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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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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One Melanoma Patient’s Need for Community

 I find it comforting to meet or speak with others surviving the melanoma maze. Visiting my cancer centre on a regular basis for all of my appointments and treatments, I sit quietly with my peers awaiting theirs, but I almost eagerly strike up conversation if someone even glances my way. I must startle some of these unknown strangers, likely appearing like some overzealous puppy jumping up to make friends, panting all over the place. I have plenty of wonderful friends already, but I seem to crave new friends. I want cancer friends, I need common ground.

Since my diagnosis and countless consultations with medical professionals of all types, I still find the greatest comfort speaking with others in the same boat as I am. We compare facilities and oncologists, pain levels, side effects, and remedies for improvement of our symptoms.

We are all there for the same reason, and we seem keen to exchange stories and curious questions about clinical trials and treatment options and number of surgeries under our belts. It is a strange language, one I have learned a lot about in the past year, but one that I believe I will never fully understand.

I have happened to have met three people with melanoma, but that’s it. It is not the most common ailment along my traveled path. All cancer cases are personal of course, but I quickly learned that melanoma is even more a mysterious beast.

Melanoma patients are a unique breed, fighting a unique battle, and we need comrades on our side. Talking it out with someone with the same type of metastatic cells not only eases our psychological burden, but it lends hope to the fight. It reinforces in our minds and bodies that we may have other options to explore or other questions to ask our oncologists. There are other people ALIVE coping with what we are coping with, and they may be able to help.

Life raft thrown out! Even if for just one day, that is one day’s worth of hope that I may not have had if I hadn’t spoken with my comrade.

Online resources are a huge help also – when first diagnosed I was banned by my doctor from the internet, but now that I have learned more and I am more comfortable with the way things seem to work, I feel less panic about reading things online about my disease. Even the venting of fellow bloggers is comforting, I feel relief when reading their words and knowing that I am not the only one who is afraid or discouraged or angry.

I can sift through the medical terms and look past the statistics, and every now and then I find a nugget of information that sends me in an entirely different direction, usually uncovering another piece of my puzzle. Whether about melanoma or the likes of a new meditation technique, it gives me the feeling that there is something I can do about my situation, and that there are others who are doing the same.

I remember feeling when I was first diagnosed that I was walking around with a giant digital clock above my head, with large green numbers counting down to my expiry date. I felt I stuck out like a sore thumb, wore that clock around like a black cloud, wondering how to get it away from me. I ducked and dodged and denied until I was blue in the face, now I focus my energy on positive action, namely, writing or talking with anyone willing to show their community flag.

The clock seems to have faded this year later, but it is not gone. That is in part due to those that I have connected with, in person or online, that have said the same things I have felt, or that have experienced the situation I am in. Venting, learning, sharing: all coping mechanisms.

I trust my oncologists, but I gain extra strength when I speak to people who have walked the same steps I am being directed to take. I hear it repeated and think it is a good sign that I am not some entirely solitary being receiving a mystical treatment unknown to anyone outside of the chemical laboratory that mixes up my IV bag of potion.

Every day I push on, hanging out with my family and friends, going to my appointments, resting with my cat, and seeking the additional community that I need in order to properly fulfill my ambition to fight melanoma. I have to fight my individual battle my way, but I am also content to share that fight with others, either gaining from their perspective, or being able to help someone else in some small way. We are all neighbours on this ship, and I think we can paddle together to keep it afloat.

Natalie Richardson – www.impatientpatientmomma.blogspot.ca

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