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What It Means To Be A ‘Survivor’.

As we move deeper into April I’d like to continue our conversation about cancer in honour of Cancer Awareness month. (And introduce you to an amazing book I recently devoured, I’ll be sprinkling various quotes throughout this post that I’ll put in teal italics)

Throughout my life, I’ve wondered, “What does it mean to be a cancer survivor?”

Survivorship can mean having no signs of cancer after finishing treatment. Or, it can mean living with, through, or beyond cancer. But since reading Suleika Jaouad’s phenomenal book ‘Between Two Kingdoms’ it’s got me thinking that survivorship actually begins at diagnosis.

“…a cure is not where the work of healing ends; it’s where it begins.” 

THE PRESSURE OF SURVIVORSHIP

When you’ve “beaten cancer” there’s often an expectation to live a BIG life. To travel the world. To create something spectacular. To devote your life to helping others or find a way to save the planet. There’s a mentality that because you’ve been given a second chance at life, you’ve got to make the most of it. And maybe, just maybe, you’ve also somehow been transformed into a benevolent, superhuman genius because you beat the odds and survived. 

No pressure. 😉

What many cancer survivors crave more than anything is just the opposite – a return to normalcy. A day that doesn’t involve doctors appointments, cleaning your port, or a handful of pills just to manage the side effects of the treatment. And cancer patients can feel guilty or like they’re disappointing others if they aren’t building a post-cancer resume of outstanding accomplishments or filling their passports with exotic stamps.

It’s okay to just “be normal”. To create a quiet life that gives you joy. To slow down enough to heal your heart now that your body is going to survive. To take the time you need to get reacquainted with life outside the hospital hallways and doctor’s visits. But it can be difficult to acclimate yourself back to the ‘real world’ when you’ve been away from it for so long. 

Now that I’ve survived I’m realizing I don’t know how to live.” 

Survivor’s Guilt

“In confronting my past I have to reckon not only with the pain of losing other people but also with the pain I’ve caused others.” 

Another aspect of survivorship I’ve only very recently realized I struggle with is survivor’s guilt. I honestly didn’t even know this was a “thing” and even when the concept was first introduced to me a couple of years ago I literally responded, “Interesting, but I don’t really relate to that personally.” So, I have Suleika to thank for speaking about it so eloquently in her book that it finally “clicked” with me. 

Survivor’s guilt can show up in a few ways but many resonate with the guilt of living through an event where others died. That definition works when you lose a fellow cancer survivor or their cancer returns when yours does not.

But you can also feel guilty because…

  • You were diagnosed earlier
  • You had an easier time with treatment
  • You could be passing on genes that increase the risk of cancer to your kids
  • Of the impact your diagnosis and treatment had on your loved ones
  • You aren’t maintaining a positive, warrior mentality
  • You missed the spiritual epiphany that was supposed to accompany a cancer diagnosis
  • You now feel a life-long responsibility to take care of the people who cared for you when you were sick

For me, it shows up to this day as “over-giving”. One of the things on my ‘to do’ list was to give back to Princess Margaret Hospital where I received radiation as a child. So, I planned a trip to Africa and summitted Mt. Kilimanjaro as a fundraiser for that hospital. It felt fantastic to give back to them but now I also realize how guilt played a part because I still find myself thinking of how I could give back even more. Should I volunteer at the hospital? Give free coaching? How much is enough to say, “thank you for saving my life?” I somehow felt forever indebted and needed my therapist to point out to me, “Tammy, you’re paid in full.”  

You see, survivor’s guilt makes it easy for me to take care of others (and caregiving makes me feel good) but I’ll catch myself giving to the point where I’ve got nothing left to give and denying my own needs. So, I’m learning to take care of myself first. 

On the flip side, survivor’s guilt also means it’s hard to ask for help. As a kid with cancer, I felt so damn needy all the time…and I was. I felt like a burden to others. So somewhere along the way, I decided I couldn’t ask for help anymore. Instead, I wanted to be perceived as strong and capable, able to manage on my own. Because strong people don’t ask for help right?! Ummm, wrong, it’s actually a sign of strength. Still learning that one too

Also, when I was sick I apparently started keeping score. (Do you ever find yourself keeping a seemingly unconscious scorecard?)  All the sacrifices my family and especially my mom made for me went into one column. Everything I received from stuffed animals to decorate my hospital room to a second chance at life went into the next column. It felt unbalanced and stamped in my brain that my life from that point onward had to be about giving back and paying it forward so I could someday balance the scales and feel worthy of the love, attention, and care I received.

It was “The private shame that I carried and the guilt I bore at how all this affected those around me.”

But I’ve realized I had a very important column missing from my karmic scoreboard – everything that I had sacrificed too. A full year of school. Playdates and birthday parties with friends. Swimming outside on a warm summer’s day. Being at home in my own bed with my dog snuggled up next to me. Feeling ‘normal’ and having the boundless energy of a 6-year-old. And although SickKids is a PHENOMENAL place, filled with a lot of love, I can’t shake the feeling that my “get out of jail free” card has been cashed for this life of mine. Now, it is everyone else’s turn. So sit down and be grateful, Tammy. Know your place. And listen, I know this isn’t true, but oof, this silly karmic scoreboard of mine loooves to play mind tricks that keep me in a state of guilt for no reason. 

Shifting Perspective

“Healing is figuring out how to coexist with the pain that will always live inside of you without pretending it isn’t there or allowing it to hijack your day. It is learning to confront ghosts and to carry what lingers. It is learning to embrace the people I love now instead of protecting against a future in which I am gutted by their loss.”

Survivorship DOES transform you if you let it. Not into a benevolent, superhuman genius but into someone intensely aware of how the pain and beauty of life dance together. It shifts your perspective like looking down from the top of the CN Tower where the world stretches endlessly out before you and you feel both removed from and deeply connected to everything all at once.

Here are a few questions to help ground you and connect you to the wisdom of how you see the world now.

1 – When you’re feeling like you’re a burden imagine that if the roles were reversed. Would you gladly do the same for your loved ones? (I’m guessing yes because when you love someone you show up and take care of them the best way you know how.)

2 – Notice where you start to over-give. Get curious. What’s the story fueling it?

3 – Community, creativity, and laughter are so important. Where do you feel surrounded by like-minded souls? Who makes you laugh? If you could compose a garden, painting, sculpture, piece of music or collage to honour your cancer experience what would it include?

4 – What does it look like to have your needs met? What does it feel like? Where in your life do you tend to put yourself last?

5 – What was most helpful for you as you navigated the rough waters of profound and unexpected change?

6 – What internal compass (beliefs, values, faith) played a part in helping you rediscover hope and embrace a new life?

7 – What rituals help you stay grounded and anchor you in, as Suleika says, the space between no longer and not yet”?

8 – “Though the word may suggest otherwise recovery is not about salvaging the old at all. It’s about accepting that you must forsake a familiar self forever in favour of one that is being newly born. It’s an act of brute, terrifying discovery.”  What parts of yourself are you ready to let go of? Who are you now?

Survivorship might begin at diagnosis but it’s a life-long journey. Navigating the expectations of others and the false stories of survivor’s guilt. Letting go of the “old” you and the dreams you’ve outgrown. Honouring what you’ve survived without letting the weight of the past interfere with your future. Discovering and reconnecting with who you are now. Giving yourself permission to have new dreams of any size.

As always, I’m here to walk alongside you. If you want some gentle, loving, support on your journey and real, life-changing results you can work with me here.

p.s. Can you tell from all the quotes that I’m in love with “Between Two Kingdoms” by Suleika Jaouad? I highly recommend it as your next read AND she has an amazing website full of journal prompts you should definitely check out.

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