A question for caregivers: As we watch our loved ones navigate through the complexities of the cancer experience -- from diagnosis, through treatment, remission, recurrence, and perhaps, end of life -- does the meaning of HOPE change?
Since I first met an incredibly witty and charming young man named Peter Wilkinson and his loving wife Debs at the Teenage Cancer Trust Conference in London (England) 3.5 years ago, Peter's brain tumor has recurred three times... including most recently just weeks ago. He has faced numerous brain surgeries, chemo, and radiation treatments, but he continues to live with purpose and hope each and every day. As creator/host of several web series (Pierre Live, The Relapse Diaries and more -- watch on JimmyteensTV here) he chronicles his experiences with honesty and humor to raise awareness and let other young adults like him know that they aren't alone.
Peter is only 28 years old. He and his best friend, partner, and wife Debs are so young to be facing this persistent "cancer creeper" that haunts every waking hour of their daily lives. I asked them: Has the meaning of HOPE changed for you, as your cancer story moves into its eighth year?
Debs: When I was first asked to write about my feelings surrounding hope and how it has changed throughout my husband's cancer experience, I originally didn't really define myself as having hope.
At the initial diagnosis, once all the shock and upset had faded away and as hospital visits became the norm, I felt more comfortable about the whole cancer situation and the uncertainties that surrounded my husband's prognosis. As I became more comfortable, I also became more positive. Looking back, I suppose I was being hopeful, but at the time I simply thought I was being a positive realist.
Over the past seven years, my husband's cancer has gone from being terminal, to being cancer free, to relapse (twice), to its present stage, in which neither we nor the doctors really know what will happen after this next round of chemotherapy. My hopes have changed throughout that time. For example, when Peter was in his cancer-free stage, at every check-up scan I was hopeful for a clear MRI. Now, I'm not hopeful for a clear MRI; I am just hopeful that treatment will stop the cancer from growing as aggressively as his type of tumor is known for. I hope to try and achieve as much quality of life as possible; to be able to have a "normal-ish" life until we come to the point of no more treatment, no more cure.
I always feel like that could be interpreted as a pretty negative attitude. I feel I should defend why I think like that. The realist in me understands the cancer and the problems it has and will cause... but of course, I want the fairytale ending too. I do still hope that the chemotherapy will work and every scan will be perfect. No matter what the prognosis, there will always be a part of me that will keep hoping to hear those two beautiful words again: cancer-free!"
Peter: Hope is something I have always had, ever since I was first diagnosed all the way back in 2007 at the age of 21. I think it came because I was in a very dark place at first and couldn't find any hope at all. I was terminal. My world seemed so dark, and it wasn't until I realised that if I tried to find humour and positivity in my cancer situation, I started to feel more positive myself. If all you have is negative then where can we find hope?
It's not easy to stay positive after so many relapses but I make myself accept it because -- and this sounds harsh -- I cannot dwell on it. It helps no one if I start to feel sorry for myself. People around you react to how you deal with your diagnosis. So I have tried to find hope in all my situations. For example, I'm not allowed to drive a car due to my health, but on the positive side I just think, "Well, I get my very own driver!" I will always keep my "tumor humor" -- comedy, I feel, can really break down that "big C" in the room.
My life is what it is now. Since cancer it has been hard; I am now a disabled adult, but I never let that stop me. On the positive side, through my cancer journey I have gotten a job I love and have benefited from so many opportunities. I have hope that I will get better. If I don't think that, then all we have is the negative.
Since Peter and Debs responded to my question, Peter has begun a new chemo treatment that is being released through a port inserted into his spine. He continues to blog and post on Facebook about his experience. Together, Peter and Debs continue to redefine the meaning of hope. It's my hope that their love story will give comfort and joy to other young adult couples facing a similar journey.
Support and resources are also available from the following organizations, among many MANY others: OMG Stupid Cancer Summit, Young Adult Cancer Canada, the Young Adult Cancer Network at Callanish Society, and Cancer Fight Club.
Note: this article was originally published in the Caregivers' Section at Cancer Knowledge Network.