Leslie Brochu of Kamloops BC is a mother, caregiver and advocate for her adult son Chris Brochu, “my son was diagnosed with Melanoma (first time – 2009 and treated with wide excision) and (recurred in 2015 – Stage 4 metastatic melanoma with pleural effusion, metastasized to lungs, lymph nodes, kidney and skull).” Mary Zawadzki, Melanoma Network of Canada’s patient care specialist spoke with Leslie to share her experience and offer some friendly advice to caregivers supporting a loved one through a cancer diagnosis.
Briefly describe your journey as a caregiver.
In 2015, we were in a frantic race to find options for treatment for my son who had been hospitalized, was very ill and in palliative care. He was initially treated with dabrafenib and tafinlar which stopped working after 90 days. During this time I was supporting his needs related to pain, nausea, side effects, financial and emotional support.
We sought out energy healing, treatments in the U.S. and Mexico and naturopathic oncology. A naturopathic oncologist in Vancouver BC told us about a combo therapy he had heard of. The timing of this information coincided with the failure of the dabrafenib and tafinlar treatment and the Cross Cancer Clinic introducing a Clinical study to test the ippilumimab/nivolumab combination immunotherapy treatment. Chris was admitted to the study at a very advanced stage of his illness with likely 4 weeks to live.
Who was your support network?
Friends and family, Melanoma Network. Survivors, energy therapies, and of course the Cross Cancer Research team once we arrived there.
What coping techniques were most helpful for you?
Gathering information, seeking options, survivor experiences, the wide support of friends and family and interesting and manageable distractions.
Did you access support from MNC, what was helpful?
MNC was very, very helpful. We came into contact with MNC as my son thought starting a Strides for Melanoma walk in Kamloops would be helpful for him and the Melanoma community. He wanted to give back and do something very positive. This is how we initially became engaged with MNC. As his illness progressed we became connected with survivors through the MNC. There were not many Stage 4 survivors in 2015. Connecting with survivors was both hopeful and helpful. In retrospect I would have pursued more information earlier through MNC on new and upcoming treatment options.
Did you access community supports?
There was nothing specifically available in Kamloops related to Melanoma as it is considered a remote location from the main Cancer clinics. Once Chris was in Edmonton at the Cross Cancer Clinic, he was hospitalized and started the experimental treatment. Tremendous support was provided through the Melanoma Research and Treatment team at the Cross Cancer Institute.
What would you say to a caregiver today with what you have learned from your own experience?
- Be sure to explore all options as soon as possible i.e.: new and existing treatment protocols, and treatments that are being lobbied by Melanoma Network of Canada.
- BE SURE YOUR LOVED ONE IS BEING TREATED BY AN EXPERT IN MELANOMA.
- Understand the standard of care and protocols to avoid unexpected surprises.
- Reach out to survivors and their caregivers, they are a wealth of information. Participate in a support group in person or on-line.
- Be aware of on-going trials and studies and the eligibility requirements as you may need to access these services.
- Embrace distractions that give you a mental break from time to time.
- Try to eat well and get adequate sleep
- When people ask what they can do to help, give them a job that will help you or your loved one. I found people really wanted to help but did not know what to do.
- Get involved with fundraising for cancer research, treatment or support – it helps to be doing something very productive with likeminded people who in some way share your experience.
- Try to understand and access the full range of services offered by Melanoma Network of Canada. They are a wealth of information and support.
- Ensure you or someone you trust has the legal right to represent your loved one in medical, legal and financial matters in the event they are not able to manage at times during their illness.
What are helpful things to know when supporting someone with skin cancer?
A. Life is forever changed by this experience, support the direction they want to take as this is part of their healing. Seek out survivor support and engagement services.
B. Always be positive and hopeful. Pursue every option available. Don’t lose hope!
C. Depending on the degree of illness, try to make days as normal and joyful as possible given the circumstances. Plan outings, adventures, activities, and meals that are manageable.
Anything you want to give as a message for National Caregivers Day.?
Caregivers are an extension of the patient, translating their needs, understanding their physical and emotional pain and ultimately seeking helpful solutions. Supportive care is critical to improve outcomes for patients. Caregivers need our respect, support and encouragement to carry out this important work.
MNC Caregiver Support Group
Join our skin cancer Caregiver Facebook Support Group. A private group for people to tell their stories, ask questions & get the support they need. Open to anyone who is supporting a loved one with skin cancer.