Why can’t we be frank about remission?
Little is known about what happens after the cancer ‘war’ is won. How does the survivor put their mind and body back together? How do they leave the 'Cancer Crusade' behind?
Information on life after cancer is so sparse and vague that when you do come to survive, it’s almost a surprise. After all, mention of cancer in the media comes bleeding with the connotations of death, death, death. There might be the human interest story: ‘Oh bless them for being so brave,’ or the many stories of fundraising efforts to support the massive charity industries. But rarely do people stand up and say, quite frankly, ‘Hey, life after cancer can be pretty shit.’
It’s all about gratitude
When you seek support from the very people that helped you reach remission - your nurses, your doctors, those closest to you - they often don’t know what to say and don’t know how to help. Perhaps they give you the usual advice: don’t smoke; cut down on drink; eat your greens; get off the sofa. But that just doesn’t seem to be enough. It’s not adequate to make you feel happy and healthy again.
The remission narrative expects you to forget, move on, and feel grateful. But how can you feel gratitude when you’re still in survival mode expecting the sword of Damocles to swing down on your head? Or when your body refuses to behave in the way it always did? Or the very loves and activities that used to define you as a person are now out of reach?
I beat myself up royally during the first year of remission. I had no one telling me it was OK to feel frustrated, or angry, or hurt, or confused. I had no-one to show me how to go about picking up my old life again. And physically, it seemed everyone before got over cancer and returned to full health. I had no role models to look up to.
It is confusing to know where we fit: we don’t feel 100% healthy, nor are we ‘cancer patients’. It is difficult to feel normal. With no voices or stories on remission, there can be no normal. And this silence makes you feel like you're failing; that you're not doing cancer recovery well enough. Everyone else has moved on, why can't you?
Putting on the 'stating-the-bloody-obvious' hat: I see now there's no point comparing my recovery to anyone else's. We all had different cancers; faced different diagnoses and treatments; and we have different support networks. We all deal with cancer differently. Comparing ourselves would be like comparing a ballet dance with a Miley Cyrus twerk: they're both impressive dances... but they're different.
Yet hearing more voices would be so helpful. Perhaps we can all do something to make it easier: reach out to each other, the media, the powers that be, and share our experiences. Shout it from the rooftops.
Because we aren’t cardboard heroes disappearing into the sunset, but people who still have doubts, fears and health issues. People don't like to talk of ill health, but cancer survival need not be a secret.
Make remission less isolating: get in touch to share your experiences -whether that's your story, a practical strategy, or a helpful organisation.
Agree so so much with this , I’m not a superhero, I’m just trying to get my life back on track. The pain of recovery is sometimes as bad as the pain of cancer itself , but how do you say that without seeming ungrateful...
Have just read this post. Absolutely nailed it..sadly for those who have never personally experienced cancer, will just never know how it feels. I tend not to bother telling people how I feel because they don't truly understand. It is reassuring that I am not alone ?
Why do I feel guilty whenever someone dies?
I just cant understand in this day and age why more is not done by the medical profession to help people after the end of treatment - there would be less need for medication or stress for the patients, less visitors to the doctors for help etc. In The Netherlands, my surgeon arranged for me to do three months of rehabilitation after my last bout of surgery although I was over the age limit - I was 75 - here in The Netherlands and that helped me so much. Not only did we do swimming and physical exercising but there was also physio therapy and the Dutch patients had pep talks, talking to a physiologist plus meditation. I just feel that mental stimulation/advice has been sadly neglected everywhere. I have learnt so much from the Cancer Survivor's Companion book, I can't recommend it highly enough but also feel that classes having discussions on such a subject would be great. We have a problem in The Netherlands as although there is a very large English speaking population here there is really nothing for us in the way of help/counselling etc. Sad. Is there much mental/rehabilitation done in UK as have not lived there for over 50 years!