My biggest support systems are my family. My partner was still working, and he and my sister were my main supports. My sister was an ex-ICU nurse, and she would come to all my appointments with me and make sure I asked the right questions. My eldest son is a doctor in Australia, and I would run things by him. He was also a good support to my other 2 sons who were away at university and didn’t have medical knowledge and therefor wanted to google everything. My neighbours were also a great support system to all of us, as we all moved on to the same street 26 years ago. My children grew up with a core group of families that all had kids the same age.
For patients trying to navigate the healthcare system, connect with a social worker at your cancer hospital as they can be an excellent resource and help you navigate your local cancer facility. There are also a lot of Facebook groups now that can help you connect with others who have lung cancer here in Canada and abroad. I wasn’t initially apart of any Facebook group, but I have since joined quite a few and I enjoy the comradery. Through one of the groups, I met another lung cancer patient living in Winnipeg. We have different mutations, but as we talked, we decided that a local lung cancer support group was needed. We advocated at CCMB, and we were given a social worker that organized a support group; with our first monthly meeting being in April 2019. Through this support group, I presented at a couple of the information sessions for Cancer Care Manitoba and Lung Cancer Canada. My name was also put forward by CCMB to the local Winnipeg Free Press, and an article was published in November 2019, during lung cancer awareness month.
My hope for my future is for research to stay one step ahead of the brain metastases progression.
I know at some point alectinib will stop working as my cancer becomes resistant to it, but there are other drugs coming up in the pipeline. To lung cancer patients, my advice would be to keep yourself healthy as possible, do things that are important to you and that give meaning to your life. View your health care team as your partners, don’t give up hope and continue to believe that there will always another drug that will extend your life. I remember saying at one of the presentations
I gave that there is nothing like a potential life shortening illness that makes you focus on getting the most out of the here and now. Live in the present, plan for the future, and do things that are important to you.
Read more about Alyson at the Winnipeg Free Press.