04/30/2013 05:35 EDT | Updated 06/30/2013 05:12 EDT

Cancer Turned My World Upside Down

woman getting ultrasound of a...
woman getting ultrasound of a...

It strikes like a bolt out of the blue. When you or someone you love is diagnosed with cancer, you are suddenly thrown into a world of hospitals and doctors, a world of tests and treatments, a world of stress and anxious waiting. It happened to me in 2006, when I was diagnosed with breast cancer, and it turned my world upside down.

As a journalist, I am confident in my ability to take in lots of information and make sense of it on a daily basis. But when I was diagnosed with cancer, everything changed. I was given an overwhelming amount of medical information and asked to make critical treatment decisions. I felt very strongly that I did not know enough to do that. As an added pressure, during treatment, you can go for weeks between scheduled appointments -- plenty of time to forget or confuse the instructions and information from the last appointment.

This is where a cancer care assistance program can be highly beneficial. These programs are designed to help individuals and families make sense of all that information, and turn it around to make confident, informed decisions. I was lucky enough to find CAREpath, a Toronto-based cancer assistance program that helped me during my treatment with breast cancer.

CAREpath offered me a level of support that supplemented my traditional cancer treatment and provided guidance every step of the way. Our cancer care system in Ontario is excellent. I can't say enough good things about my treatment first for breast cancer, then for pancreatic cancer. However, it is very complex. Depending on your diagnosis, treatment can often last for a whole year. As you move from one phase to another, through surgery, chemotherapy, and radiation, there is not necessarily one caregiver who stays with you through the entire process. This is what CAREpath offers.

During my treatment, I had a weekly phone call with my CAREpath nurse, and she took the lead and became a centralized source of knowledge and record keeping. She kept track of all of my test results, treatments and gave me holistic advice based on what I was going through. For instance, at chemo treatments in the hospital, I would be briefed on all the possible side effects, when they might occur, and what to do. It's a lot to take in. It was extremely helpful to be able to talk with my CAREpath nurse at length about what I was actually experiencing and to be reminded of what to do in the moment.

It was extremely reassuring to know that CAREpath's experts had reviewed my treatment plan and agreed with it, and that they could attest that my doctors were first-rate. My case turned out to be quite complicated and it was critical for me to have a sounding board for very difficult choices -- like whether to have preventive double mastectomy (I did not.).

As a two-time cancer survivor, I am continuously approached by individuals who are going through the same process, and looking for advice or guidance on where to turn, what to ask and who to see. CAREpath is the kind of resource every patient could use. I encourage anyone going through cancer to approach the Human Resources department at their workplace and ask whether they have a cancer assistance program. Better yet, try to get one before you or a loved one really needs it.

From the moment you hear that C- word, cancer, nothing else matters. Dealing with the disease is extremely difficult both physically and emotionally. Not just for the patient, but for everyone around her. I found I needed more support than I ever had before -- from family, friends, co-workers. Having a cancer assistance program to depend on made an enormous difference. It relieved some of the burden for me and everyone in my life. That made the entire experience much, much easier. And that is invaluable.

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