Living in the US, I learned to advocate for my own healthcare. Support groups helped me know what questions to ask. They helped me when I had odd symptoms and couldn’t reach my doctor. They helped me know what was normal and what needed urgent attention.
In Canada, I don’t have the same level of contact with a support group, but I have found one. When I moved here, searched for one. I wanted to stay connected in some way in case I needed it. The group I found is focused on an annual retreat; however, it gives me a place to ask questions and find out what care is available in the city, as I now live in a small town.
I’ve been having an issue with unexplained swelling, for a year now! We have ruled out cancer and heart problems. The only explanation I have is lymphedema. However, the only lymphedema care we have locally is for manual lymphatic drainage, a special type of massage. The challenge is that I have swelling in multiple places, so it is unclear where the massage therapist should be directing fluid for best effect. Also some kind of compression garment is needed to help prevent it from re-swelling after the treatment. The place where you go to buy the specialized compression needs specific directions (a prescription) on what is required. So, I need to see a specialist. That is where the challenge lies.
No amount of Google searching was helping me find the right specialist. I asked the support group. It didn’t take long. I had several people make suggestions. Within a couple of hours, I had a name and phone number.
I called, and the receptionist gave me the information I needed. She told me who I needed to be referred to and the fax number for the referral (yes we still use fax referrals here). My next step is to go to my family doctor (I’m lucky to have one, if I didn’t I’d need to access virtual care) and have him send in the referral.
I’m fortunate that I learned to advocate for myself. I am fortunate to have a family doctor, but he is not a panacea. He doesn’t know all the obscure ins-and-outs of cancer care in this province. Sometimes tapping in to the patient network is the fasted way to get care.
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