Life after Cancer Co. in the UK found that over 90% of people have a more difficult time with life after cancer than they do with their cancer treatment.
NED–No Evidence of Disease.
However you say it, there’s this idea that once you’re “cancer-free”, your life can go back to normal.
I think that for most of us going through cancer treatment, whatever that might look like for each of us, normal is the goal that gives us hope. We dream of the day our doctor tells us treatment worked and we are cancer-free, free to return to life as we previously knew it.
But how do you return to life as you knew it when you aren’t the person you were before? Cancer changes us in many ways: physically, mentally and emotionally. We see life through a new lens where things we once deemed important seem so insignificant now and our priorities have completely shifted.
So we celebrate the momentous milestone and the friends and family who rallied around us return to life as normal, expecting that we are doing the same.
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And while I appreciate that SO much, and also want to celebrate the wins, it isn’t that simple.
I have the most supportive friends and family and still find that cancer and life after has been one of the most isolating experiences of my life.
Most of us don’t have another friend or family member who has undergone cancer treatment so while we feel supported, our support system can’t understand what we are experiencing and feeling. If we do know another person with cancer, it’s even less likely they have the same type of cancer meaning their treatment, symptoms and side effects are completely different.
I really struggled to identify as a survivor and often still felt like a cancer patient. My friends and family weren’t able to understand this, leaving me feeling unseen. After years of this, I finally sought out and joined an online support group for those with the same form of cancer as myself.
Having a community of people with shared trauma slowly helped me heal. Because cancer is trauma. We spend so much time working with our care team to treat the physical effects of cancer, the mental and emotional ones often go overlooked for far too long.
Depression, anxiety, suicidal thoughts: I experienced all of these in my first year NED (no evidence of disease).
I couldn’t help but wonder what was wrong with me. I was cancer free – shouldn’t I feel happy?
The amount of anxiety I felt in my first 2 years of “life after cancer” was paralyzing. Life after cancer doesn’t feel like life without cancer. Scans, skin checks, biopsies: these things remain part of our lives years after the cancer is gone. It’s a clear reminder that the cancer might come back.
For the first two years I was NED, I had to have skin checks every 3 months to check for recurrence or new concerns. Every time my doctor entered the patient room and asked how I was, I would burst into tears.
To this day, I still wonder why no one thought to ask me about counseling or therapy. In the end, I reached out to my GP on my own and asked for a referral.
I wish I could say my experience is unique but I’ve heard this from many other survivors. Until our care teams include mental health professionals as well as cancer specialists, we need to advocate for ourselves.
Cancer takes a toll physically, mentally and emotionally. We know ourselves, our bodies and our minds, best and health matters in all forms.
Whether you’re a cancer warrior, a cancer thriver, or a cancer survivor, there’s an entire community here to lift you up.
You are not alone.
Resources for getting help and support as a cancer patient or survivor:
Counseling for cancer survivors: https://www.cancer.net/coping-with-cancer/finding-social-support-and-information/counseling
Livestrong counselor search: https://www.livestrong.org/we-can-help/preparing-yourself/finding-a-counselor
Find cancer survivor survivor support groups near you: https://www.cancer.org/treatment/support-programs-and-services.html
Online cancer community dedicated to improving quality of life: https://www.instagram.com/chargecancer/
Comprehensive cancer support for patients and caregivers: https://www.cancersupportcommunity.org/
Find resources specific to your Cancer Community: https://stupidcancer.org/get-help/resources/