ALK Positive Members Share How They Live with Hope
Living with hope means different things to different people. Hope can come from any source and can take any form. Improved longevity and quality of life always seem to take center stage as sources of hope among our members, but so does spending precious time with family and loved ones. And then, there’s finding hope at the most unexpected times and circumstances. For instance, being given some much-needed comic relief shortly after a devastating diagnosis, or learning of a loving, supportive community of fellow patients while being treated in the hospital for cancer complications. It goes to show that life is never just black or white, and that hope can be found even in the most challenging of times.
Let’s hear it straight from some of our members and how they have found hope and inspiration to continue to live a full life.
Aileen Murgatroyd (caregiver to daughter, Kay):
“Initially, our normally fit and well 17 year-old daughter, Kay, had a collapsed lung. This led to test after test, but there was still no definitive conclusion. They knew it was cancer, but could not find the primary. Two days after consulting with an oncologist specializing in cancers of unknown primary, we got the news that it was actually lung cancer. Doctors told us they could not promise to get rid of all the cancer, but that they could help Kay feel better. At the time, we were -- and still are -- supported by the Teenage Cancer Trust and were so lucky to be put under the care of a fantastic specialist nurse oncologist who had us giggling in no time!
Hope came from the ALK-positive diagnosis. Kay initially endured 4 cycles of Cisplatin and Pemetrexed with its terrible side effects. This was followed by maintenance Pemetrexed which gave her a much better quality of life and allowed her to return to college. In June 2017, Kay had progression, which landed us back in hospital with a right collapsed lung, so Kay had to have a chest drain for the third time. During that time in hospital, I came across the Roy Castle Foundation and a lovely lady who recommended we joined the ALK Positive Facebook group. Finding fellow suffers and supporters has been the best hope! A lady even messaged me from Australia to tell me her son was diagnosed at 20 and was now 25 and currently traveling around Europe with his girlfriend, which is just what I needed to hear.
Kay is now on Brigatinb, three years from diagnosis, 20 years old, and just finishing her second year at Sheffield Hallam University. She does 12 hour shifts, night shifts, and loves to go out with her friends. Amazing to see what she’s going through!”
Marlene Michaels (patient):
“My family keeps me going, providing me with the hope I need to live with ALK-positive lung cancer. My love for them and the desire to be part of their daily life helps me cope with the disease.
Hope is important to help me get through the roller coaster ride of cancer. When the disease brings me physically and mentally down, I know in my heart and soul that I need to get back up again. I thrive on living “good” days with my two sons, my husband, and my dog. Being able to make meals for them, watch movies together, help my boys with problems, and literally be mentally, emotionally, and physically there for them to live as normal a life as I can. This gives me hope!”
Sam McBride (patient):
“After being diagnosed with stage 4 lung cancer in April 2015, my first thought was to get my affairs in order right away because I thought I probably wouldn't be here much longer. I knew nothing about lung cancer, except how deadly it was and that the life expectancy was less than 6 months.
I have since learned that is not the case, especially after finding out I had the ALK mutation, which was treatable with oral targeted therapy drugs. That gave me hope that maybe I would be around a little longer, so I allowed myself to start making future plans, like booking a cruise in 6 months and planning for the holidays ahead, which I hadn't allowed myself to do in the beginning. I have a strong faith and I turned everything over to God, put my trust in Him and began living again.
It has been over 4 years since my diagnosis, and according to my oncologist, I am doing exceptionally well. Never lose hope! It is sometimes all you have to keep you going.”