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ocular melanoma patient support

Continuing Ocular Melanoma Awareness all year round

November is Ocular Melanoma Awareness month – and it is the time of year we at Ocumel Canada bring awareness to the importance of dilated eye exams for the detection of ocular melanoma.

We will take this opportunity though, to continue the conversation and maintain the #EyeGetDilated campaign beyond November, so that all Canadians can learn about their options for head to toe body health and to include eye checks in their list of doctor exams.

Early detection is incredibly important for many eye diseases, including ocular melanoma. Ocular melanoma is rare, affecting approximately five in a million people. About 200 cases are diagnosed per year in Canada. While it represents only 5% of melanomas, ocular melanoma can be rapid and aggressive, accounting for 9% of melanoma deaths. Also referred to as uveal melanoma, ocular is a more inclusive term; 90% of primary ocular melanoma develops in the choroid.

To read more about the importance of annual dilated eye exams, click on Sheila and Leanne’s stories:

 

 

 

 

 

 

 

 

We are proud to have partnered with the groups BC Doctors of Optometry and Alberta Association of Optometrists! Please click here to learn more about them and how they have supported the #EyeGetDilated campaign this year:

 

 

For more information about Ocumel Canada and the work we do, visit any of the following pages:

OcumelCanada.ca

Ocumel Canada – About Ocular Melanoma

Ocumel Canada – Helpful Links

Ocumel Canada – Resources and Support

If you or someone you know has been diagnosed with primary or metastatic ocular melanoma, connect with our community of support, Canadian bilingual Facebook group:  Ocular Melanoma Connect/Connexion mélanome oculaire 

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National Cancer Survivors Day

June 7th, 2020 is National Cancer Survivors Day!

         As Melanoma Awareness Month is so closely followed by National Cancer Survivors Day, which takes place on the first Sunday in June, the two occasions feel symbolically connected. May is a month wherein those who have been touched by melanoma, ocular melanoma, or non-melanoma skin cancer take the time to remind themselves and others of the importance of skin cancer prevention and detection, and emotional and financial support for patients. The conversations that we have throughout Melanoma Awareness Month traverse the most early days of diagnosis, through the creation of a healthcare plan, treatment, and survivorship. Therefore, National Cancer Survivors Day– which is June 7th this year– feels like an appropriate, and especially hopeful, way to conclude the journey that we trace throughout Melanoma Awareness Month, from diagnosis to survivorship. Therefore, we would like to bridge Melanoma Awareness Month and National Cancer Survivors Day reminding you to participate in this important occasion!

         National Cancer Survivors Day is a not-for-profit organization that began in the United States, but is beginning to gain a global following. To help spread the word about National Cancer Survivors Day, they have a number of social media graphics that you can share, and many resources for organizing your own National Cancer Survivors Day event. There is also a great list of resources on their website of issues surrounding survivorship, other non-profits, statistics, and news for survivors.

         Melanoma survivor and Save Your Skin Founder and President Kathy Barnard has previously written: “[when I was diagnosed] I realized how big my support network was. I had a lot of family, friends, colleagues and people in the community who were there for me. Together we stand strong. And today, I have new friends that I have created, new people I have tried to help. I want to continue building a community where people living with melanoma are not alone.” This desire to build community has always been at the core of Save Your Skin Foundation. We hope that you will finish off Melanoma Awareness Month by participating in National Cancer Survivors Day, in order to support and honour the cancer survivors in your life.

 

 

 

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Melanoma Awareness Month: Patient Support Resources

 

Everyone has different support needs, especially in the context of a melanoma, ocular melanoma, or non-melanoma skin cancer diagnosis. Whether you are looking for community, information, or strategies for self-care, we have resources available for you. We encourage you to take a look through our website to find what works for you, but for now, here is an overview of what we have to offer. If you are particularly looking for information and support related to the COVID-19 pandemic, you should check out our COVID-19 information hub.

In our 2017 survey report, “The Affects of Melanoma on the Mental Wellness of Patients, and the Landscape of Mental Health Support in the Canadian Melanoma Community,” Save Your Skin found that the effects of a melanoma diagnosis on the mental wellness of a patient is a real and urgent concern. Survey participants reported needing support with fear, grief, end-of-life planning, their diagnosis, next steps, living with cancer, family support, survivorship, and hope. The most ideal forms of support for participants, according to the survey, are group therapy, one-on-one therapy, and family support. The majority of participants (66% in our English survey and 84.21% in our French survey) reported wanting mental wellness support after their cancer diagnosis. Therefore, if you are fighting cancer or know someone who is, it might be helpful to participate in or share the resources below!

 

Webinars

Save Your Skin has been running webinars on medical and patient support topics since 2015, the video and audio recordings of which are archived on our website. These webinars are not only an excellent educational resource, but are great for connecting with the oncology community and meeting other patients and survivors. In terms of mental health support and community, the “Mental Wellness & Support After a Cancer Diagnosis,” “Living Beyond Cancer,” and “Surviving Melanoma: A Discussion on Survivorship” might be especially interesting to you– however, it is definitely worth looking through the entire list!

 

Patient Support Group Chats

On the first Thursday of every month, we host our informal Patient Support Group Chats. These meetings are free, can be joined by phone or online, and are open to melanoma, ocular melanoma, and non-melanoma skin cancer patients and survivors. These group discussions include patients and survivors from across Canada, and members of the Save Your Skin team, including Founder Kathy Barnard.

In addition to our support group, you can find a list of other support group options on our Additional Resources & Support Groups page, which may include something that is more local for you.

 

Emotional and Mental Wellness Resources Page

Our Emotional and Mental Wellness Resources page features many resources related to mental wellness. These include guides for coping with overwhelm, catastrophic thinking, and grief, for improving your quality of life, and for maintaining support networks and hope. This page also includes a link to Psychology Today’s chronic illness therapist search engine, which will help you find options for therapy in your area. On this page, you can also view our guide to self care after a cancer diagnosis

 

Community and Hope

If you are looking to make connections with people who have gone through a melanoma, ocular melanoma, or non-melanoma skin cancer diagnosis, or to read stories of hope, you might also be interested in our survivorship initiatives, such as Melanoma Through my Lens, which features the stories of six Canadian melanoma survivors, or I’m Living Proof, a global map that showcases the stories of many melanoma, ocular melanoma, and non-melanoma skin cancer survivors. If you are interested in speaking to someone you see on I’m Living Proof, you can request to connect with them to be put in touch.

We hope that Save Your Skin has something to support your mental wellness, wherever you are in your journey. This Melanoma Awareness Month, consider taking the time to investigate what resources may help you, or share the graphic below to your community, as you never know who might need help. Remember: hand in hand, we fight skin cancer together.

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