Volunteer spotlight: Suzette Chen

Personal Stories | July 7, 2023 | Dying With Dignity Canada

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A photo of Suzette with the fall colours behind her

In April 2023, we sent an email to our volunteers during National Volunteer Week to thank them for the time they dedicate to our organization, and we asked, “Why do you volunteer for Dying With Dignity Canada (DWDC)?” We had so many personal and special replies including this one from Suzette Chen of our GTA Chapter.  

Why do I volunteer for the GTA Chapter of DWDC?

The negative side effects of my cancer treatment were so disheartening that I left the treatment program 4+ years ago knowing that that decision meant I would have about 50% chance of surviving 5 years cancer-free.  I explicitly did so after sober consideration of the fact that I would not be able to live the active life that I enjoyed if I continued treatment and incurred even further side effects.  To this day, I cannot do what I used to do and have had to give up activities I used to enjoy but there are still some that I can do at a level that is still fun. 

The reason I could chose to have a fun, fuller, potentially shorter life (rather than a longer, sad, less capable life without the activities I enjoy) is the fact that Canada already had legislation that allowed medical assistance in dying.  I knew I would qualify as a cancer patient if the cancer got so bad that I could no longer live independently, enjoy life, and live with dignity. 

The law gave me the confidence to choose a good life rather than just a long existence, and to allow me to go out on my own terms if cancer should make being alive unbearable. 

So, I want to help ensure others have the same opportunity and option to make decisions on how they want to live their life including the way they die. 

We called Suzette and spoke more about her choice to end her cancer treatments, and her approach to life – and death. 

How did the people in your life react to your decision to end your cancer treatments? 

I would say that my oncology team did not understand, and some expressed this to me. Generally, my family has been supportive; they haven’t expressed that they are either for or against my decision, but they have accepted it and I know that they will be there for me if need be. My daughter, who is my Power of Attorney for health care, supports my decision but has expressed that she doesn’t want to talk about it all the time. 

Tell us about how Canada’s MAID legislation influenced your health care decisions. 

In a nutshell, the oncology team seemed to be solely focused on getting rid of the cancer no matter what, but I needed a holistic approach to my well-being and made a health care decision based on the MAID legislation. I spoke to a professional with a background in cancer support programs who asked me a lot of tough questions about my decision and reasonings around ending treatment, and in the end, I felt very confident with my decision and in conveying it to my oncology doctors even when they were explicitly opposed to it. 

After that, it became clear that there isn’t a support system for you when you leave the treatment program. You are on your own. You have to be your own advocate. You have to figure out what you need to do to achieve meaningful recovery and how to regain overall well-being. You have to maintain a positive mindset and exercise persistent mental focus to do this.  

I became a single mom when my daughter was young, and I sought out other independent, like-minded women through the climbing and paddling community. One of the things we would talk about was what makes life worth living – apart from our kids. It naturally followed that we also talked about end of life, and before Bill C-14, our interest in going to Switzerland if we were ever suffering. So it was with great interest that I followed Canada’s assisted dying legislation closely in 2015-16 and was pleased to see that this option was now available here. 

Your choice to end your cancer treatments was a courageous one; can you tell us more about how you navigated that decision? 

It’s important for people to understand that once you make a health care decision you need to own it and you have to be happy with it. 

I also had to hypothesize how much recovery I thought I could have because none of the doctors could help me with that. Statistics are kept on cancer survival rates not on health recovery. Some of the side effects of the treatments were permanent nerve damage in my hands and feet; permanent kidney and lung damage; heart damage; loss of mobility and coordination, balance, hand dexterity and spatial perception; brain fog; and loss of memory. Fortunately, on attending a presentation from medical researchers I learned that it may be possible to regain a large degree of my mobility (including balance, coordination, dexterity) with a strong rehabilitation regime and I proceeded to put all my mental and physical energy into that. After two years I think I had pretty much gained as much recovery as I could since no matter how much more I worked at it, I could not see/ feel further gains. Sure there are compromises – I no longer do backpacking trips but I can do long day hikes; I no longer do grueling backcountry paddling but I can still do backcountry canoeing trips by carefully choosing routes with flat water and easy portages; I can’t rock climb as hard as I once did because my hand dexterity never fully returned but I can climb moderate routes and absolutely love it; I can’t run anymore but who needs that stress on their knees at my age?!!  

Did I make the right decision for me? Absolutely, yes! Is life good? It’s wonderful! What did my oncology doctor think? He was blown away by my initial progress after six months, at my one and only cancer follow-up. Could I have had this life without MAID being available in Canada? I don’t think so. I believe the existence of Bill C-14 made this good life possible for me. 

What role(s) do you take on as a volunteer with the GTA Chapter? 

My forte is distilling complex information into understandable summaries. I read documents about our MAID legislation, I analyze the data, summarize, and provide key points for the folks in our group delivering presentations. As a former project manager, this is a skill I can offer our Chapter. 

Any last words to share? 

The last and most important thing I will share is that staying positive is essential – in my situation and for any decision anyone ever makes. When you make a decision in life, things usually don’t just fall into place, you have to work at it. I have to work at staying mentally positive in order to stay healthy and maintain my well-being. Positivity activates hormones in your brain that will affect your immune system in a good way and there is a whole ripple effect. Same goes for physical activity, it also drives the right hormones and for me this is key. Positivity is a practice, like meditation, and we have to work at it every day. 

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