A few weeks ago a story was published by The New York Times called ‘Lost in Transition After Cancer’, the author Suleika Jaouad who at age 22 was diagnosed with Leukaemia. The story was published during Young Adult Cancer Awareness Week. Suleika wrote about her life since cancer, as well as highlighting the need for ongoing support for those, especially young adults, who are transitioning from life with cancer to life after cancer.
Take the time to read the story here.
Suleika and my story are different in many ways. Suleika had leukaemia, which meant different treatment to what I am on (treatment much more physically demanding and taxing on her body) and a different prognosis – Suleika’s treatment was always meant to get her to remission. Whereas, with Stage 4 Melanoma, remission has never been the destination at the end of my treatment journey – my doctor and I hope for time.
Suleika Jaouad (photo from The New York Times).
However, beyond these differences, we have a connection. We are both young women in our early 20s whose life has been forever altered, physically and emotionally, by cancer. We share the same heartbreak of what we have missed out on and for what cancer will continue to take from us in the future. Underlying all of this is fear – fear of the unknown.
I want to write today about the fear of what consider a hypothetical world, the world of remission, and how I totally grasp every sentence written by Suleika.
There is always the expectation that when there is the smallest bit of positive news, or in Suleika’s case the biggest news of remission, that we should celebrate and be over the moon with excitement. From my experience, this is often not the case and it is awfully tiring trying to fake excitement for the sake of your family and friends, as well as bringing them back to reality.
As Suleika said,
‘I sometimes feel a deep sense of guilt for not doing a better job of making lemonade out of metaphorical lemons’.
I hear you, girl, ditch the lemonade and pass the tequila and salt!
This feeling comes around all too often, precisely on the days that I receive scan results. As many people like to tell me, no change is great, stable is great. Deep down I obviously feel a great sense of relief, as well as happiness, that I can breathe easy and enjoy more time with my friends and family. But, on the other hand, there is the disappointment that there has been no change for over six months now and that it does not look like these little suckers are going to disappear. Your little slither of hope for remission slowly slips away and instead of anticipating reduction at your next scan (which I hoped for in the first six months of treatment), you anticipate the doctor telling you that treatment no longer works.
Suleika did not feel the urge to celebrate her remission like she thought she would, or ‘dance a jig’ in her hospital gown, instead she thinks about the ‘countless invisible imprints’, both physically and emotionally, cancer has left on her body.
I know that if I was to go into remission that the dreams that I had prior to cancer will still remain altered and shaped by cancer. These dreams are dreams not only put on hold during treatment, but dreams that will need to be replaced by new dreams should I go into remission.
Going to dress ups as a pregnant lady was the norm for me. Odd, I know!
I am not sure if you are aware, but I was put on this earth to have babies – lots of babies. Although I have always had ambitions for my career, first and foremost, I was going to be a mum.
Today, I manage to cope with the fact that Serge and I cannot have children, but the idea that, if I was to beat this cancer, Serge and I would still not be able to have children of our own. And if we some how managed to find a way to have children (i.e. convince my sister to be surrogate), that we would have to sit down and discuss the fact that my cancer would more than likely return and that Serge will be a single father and our children would not have a mother.
I can and will, if given the opportunity, create new dreams for a future. However, life would be engulfed with fear – fear that the cancer will return. Every little illness will take me to the doctors questioning whether the cancer is back.
How can you look forward to life without cancer when your life’s dream cannot be a reality and when life is lived in fear and the unknown?
I thank Suleika for writing such an important piece of writing. The strength that it would have taken to talk about the struggles of life after cancer is imaginable. Thank you for not falling into the pressures of writing about what a wonderful gift remission is and what joy you feel. I know that you are grateful and happy that you have the opportunity to experience life after cancer, but you also have every right to feel the way you are.
I hope that your story will bring awareness to the need for continual support for those that find themselves in the unknown world of remission.
