There are two defined moments in our journey where we can feel desperately lonely. The first is when we are first diagnosed and afraid to start the journey. The second is when we have recovered from the chemo treatment and/or stem cell transplant (SCT) and we begin to see our doctor only once every three months. Our new umbilical cord has been severed and we feel alone again.

I learned that my journey with multiple myeloma (MM) was not so different than many others who have been diagnosed with MM, aside from the fact that I spontaneously fractured eight ribs and grew a few tumours that required radiation. And like other patients, it was rather disturbing to learn that I had 11 to 18 months to live if left untreated. The oncologist reassured me that by accepting to move forward with treatment I was embarking on a very long and troublesome journey (can I call that reassuring?). It was a lonely time, and I needed to accept that my family and friends would need to join me on the journey. I would also learn to accept that the medical staff were with me on this fight and that would be a great bond.

Ron and his wife, Terri, presenting their journey with myeloma at the 2017 Kelowna InfoSession

Because I like to travel, and death seemed so imminent, I opted for the treatment journey. I had the SCT and went into remission (yeah!). However, I was still feeling pain caused by a tumour which was likely attached to my spine. The doctors did another round of X-rays and established it might be scarred tissue from the tumour. I was nervous about that and wanted to reach out to other patients who might have experienced the same thing (I was afraid it might be a side effect of pamidronate). I made numerous calls all over the place; reaching out to Myeloma Canada and several support groups. This is when I realized I was not alone!

The pain did indeed turn out to be a result of scarred tissue, but the help I received from other patients was so valuable, that I decided to start two local support groups; one in Kelowna and the other in Kamloops, so that other patients would not have to be alone on this journey. We then launched other satellite support groups across the Okanagan, hosted 3 Multiple Myeloma Marches in Kelowna, Kamloops and Enderby, and I became a member of the Myeloma Canada Patient Advocacy Committee.

My next apprehension was when I was told I was in remission. My strong connection to my medical staff was now cut off. I felt abandoned. My hospital visits were now down to only once every three months and fear and loneliness set in. But what I discovered was that I had developed a strong bond with other patients who had the same fear and I knew that with their support I could get through anything.

This is what I get out of our Support Group(s); education, awareness, treatment alternatives, fighting for new treatments, moments of celebrations, information about doctors, nurses and hospitals, moments of sadness from the loss of patients, support time when we come out of remission, joining hand-in-hand with the community at our Multiple Myeloma Marches, helping me during my own palliative care and finally, great new friends who have become family!