Patient Spotlight: Jamie Gibbard, Kent, United Kingdom
Meet Jamie, one of our international group members and an active volunteer for ALK Positive. Jamie was interviewed about his journey with lung cancer, sharing how volunteering for a purpose that can improve outcomes for our members worldwide has helped him see his diagnosis in a different light.
1) Tell us a little about your journey with lung cancer.
My journey began in April 2019. The mundanity of what seemed a usual Saturday seems striking to me now. I had no noticeable symptoms of lung cancer that I recognised before then, but in the fortnight previous I had experienced a tingling sensation in my left thumb. I dismissed it, as I expect anyone would. I could not have known that it was what my oncologist later described as a mild “Jacksonian seizure”. That Saturday it happened again, but from a tingling sensation it developed into a sharp pain. I had a seizure, and was taken by ambulance to the hospital.
To my absolute shock, scans showed multiple brain tumours with the primary located in my lung. I was diagnosed with stage IV ALK Positive adenocarcinoma. It turned my world upside down, but with the support of my close family I got through the first few months. I then found ALK Positive, and the local ALK Positive UK group, which truly mean everything to me.
2) What would you advise a newly-diagnosed patient? What do you know now that you wish you had known when you were first diagnosed?
I wish I had understood the level of empathy, kindness and support that exists in our community. I found it difficult to emotionally engage with the support groups for some time, and so I did not involve myself in advocacy, in activities, in making friends. Now, I spend hours a week trying to help ALK patients, and good friends, all over the world. I have been given such energy by our peers. I am even a more understanding, kinder person as a result. I would urge newly diagnosed patients, when they feel able, to get involved in the community as much as you can. If you can't or don't want to volunteer, there are plenty of other activities and people to speak with. You will love it!
3) You have been very active in the ALK Positive International Ambassadors group. Tell us a little about the group. What prompted you to get involved and what has your experience been so far?
One thing I deeply admire about North Americans is their advocacy efforts. It was remarkable to me, how an issue is identified and immediately there are people wanting to help, whatever it takes. I saw a post about the International group, and my wife told me I should join. We went to a meeting together, and met other international patients and ALK Positive President, Gina Hollenbeck. Gina has this infectious nature to her, so in the first meeting I volunteered to make some spreadsheets from survey data. The month after, I presented it to the group and we ended up submitting it as an abstract to IASLC. To my amazement, it was accepted and I will be a co-author on a poster presentation with Gina and Naor Masasa, who created the group originally. Check it out in September! We are working on more exciting projects now, to help ALK Positive achieve its mission worldwide.
4) Do you feel that your involvement as a volunteer for ALK Positive has given you a new sense of purpose following your diagnosis? What would you advise other group members who may be interested in volunteering and advocating through the various programs that ALK Positive has launched?
Absolutely! No question, I have a new sense of purpose but it has also changed how I view the world. It is easy to become disillusioned following diagnosis, to feel helpless. Volunteering has shown me that we can and do make a huge difference, and I've made a lot of great friends doing so. If you are interested, my advice is, do it right now, you will not regret it. Reach out to someone at ALK Positive, or join our Invaluable Volunteers Facebook group. There are plenty of challenges to face and improvements to make. We are definitely STRONGER TOGETHER!
Interview by: Christina Weber