The C-Word

CANCER. 

It’s a terrifying word. It’s a diagnosis that turns people’s lives upside down. The effects ripple through every facet of the sufferer’s life and the lives of their loved ones. My own family has experienced the devastating effects of terminal cancer in a loved one, and we will never really be whole again. 

As horrible as this is, it’s not what I want to discuss today. Today I want to discuss survival, but not in the way you’d expect. This blog is inspired by a wonderful woman I know called J (who has given permission for me to tell her story). I met J online in a mums group that, honestly, saves my sanity. They are the most wonderful group of caring, sassy, badass mothers who can differ in opinion on topics like abortion and it doesn’t end catastrophically. Strange, I know, but I promise I’m not making it up! 

J is currently in remission from breast cancer and this mums group has been there throughout her journey. J is a survivor; she has battled cancer and lived to tell the tale, but that doesn’t mean her journey is over. She is still battling depression that set in during treatment, as well as guilt for not taking hold of her remission status and living life to the fullest. In her own words, “is it shitty of me that I can’t find what I imagined remission would feel like? I don’t have goals. I don’t have the urge to shout LIFE IS GREAT AND I’M ALIVE! Why don’t I? I fucking should and I feel deeply selfish that I don’t…I can’t resume [life] and I don’t know why? I’m not the same J, but I really couldn’t tell you what’s different. I haven’t figured out those words. And that drives the guilt. And that drives the shame.”

When I read this, it broke my heart.

I realised that I haven’t considered what happens after cancer. In my family, we were focused on diagnosis, treatment and getting to remission/all clear. Unfortunately we didn’t get the chance to go further than treatment, but this made me think about what would’ve happened if we did. Would we have expected life to resume? Would my cousin have had this same expectation that she *should* feel deeply grateful and happy? Would she have felt shame and guilt? How many others feel this way and say nothing for fear of upsetting those still in treatment, or fear of being told they have nothing to be depressed about? 

How incredibly lonely that conflict must feel. To have feelings that seem too shameful to be shared, even with your closest ‘people’. To have wanted freedom to live your life for so long, and then be unable to live your dreams.

The truth is, you can’t just forget about cancer when you’re in remission (or when you’re all clear, for that matter). It is a life altering illness - it changes everything. It changes who you are - your identity, how you look, how you feel about yourself, how you see the world, your belief system, your values - as well as changing what you know about the world - how you interpret the world around you, ideas about luck/benevolence/karma, what’s important, what’s not - and what you know about other people - how you feel about other people, how you feel about relationships, whether people lived up to your expectations, who is important in your life, and so on. 

There is nothing pre-cancer that hasn’t been altered, or touched in some way, by the journey through the illness. So the post-cancer self is a jumble of the pre-cancer self, the during-cancer self, and the inner voices and expectations of what *should* happen post-cancer. I imagine it’s like having children; you knew who you were, that changed during pregnancy, and the end effect is a jumbled, physically and emotionally overloaded persona trying to cope with something that has no handbook and a million expectations! Trying to negotiate your post-cancer self is exhausting, made worst by all the additional physical and emotional turmoil of the actual sickness. 

Stepping outside of your self, cancer alters every life plan you’ve ever considered. Life is so fragile. Is life even worth living when you know the pain that comes with it? What about having children… do you go ahead with it and potentially pass on ‘cancer genes’? Is it worth risking this pain or is it better not to be born in the first place? Do you change your career, or stick with the same job? Do you save your money or spend it?

What’s the right answer? How do you make the right choice? 

It’s no wonder that remission doesn’t equal happiness. 

How could it?

Your entire life as you know it gets turned upside down and you can’t even begin to deal with that until you make it to remission… so you’re focused on your goal: get better. Do the treatments. Keep going. Deal with the nausea and weakness and hair loss. Have the surgeries. Keep your eyes on the future… It’s painful, but you persist because you know that you want nothing more than to live…

Then the future comes and the path is less certain. There’s no plan; no Doctors telling you what happens next; no one writing your goals with you and making sure you’re hitting your milestones. Your supporters and carers start to move back into their own lives because you don’t need them as much. You’ve made it. But what now? Your past X-years have been dictated for you by treatment plans and uncertainty, and now you’re supposed to just reinsert yourself back into life? Go to work, be a mum or a dad, think about so-called first world problems… Do these things mean anything to you anymore? Your mind has gone to somewhere dark, and it can’t just snap back to normalcy. 

In fact, there is no normal. Your normal was replaced by “cancer normal”, but suddenly that’s not your normal anymore - you don’t “have cancer” so you don’t fit with the current sufferers, but you aren’t “in the clear” so you’re still in fear of reliving cancer, and you can’t pop back into life with non-sufferers because it can be hard to relate to people who have not confronted their mortality so closely. 

Who are you now? 

You are scarred, both physically and emotionally. You are changed, but you’re not entirely sure how. You are grateful, but you’re also questioning your existence. You are so happy to have longer with the people you love, but you’re wondering what you have to offer them and why you, and not others, lived. You’re proud of your body for the fight it’s put up, but you can’t stand the sight of yourself. You’re proud of yourself for fighting an epic battle, but you hate yourself for not having the energy to do the smallest things now. 

You are human. You are complex. You are so much more than one feeling or one idea. You are holding so many different, conflicting ideas at once that you feel like you might explode with the effort of reconciling it all. You are living. You used to do this before, except there's more in the mix now. 

You’ve lost your way. But that’s ok. This is the next part - and unlike the ‘illness part’, you can choose to work through this at your own pace. There is no timeline except the one you impose upon yourself.

The expectations of perfection (bouncing back, feeling great, living life to it’s fullest) are unreasonable and serve to reinforce the narrative that you’re not good enough. Especially when you have known and lost people through cancer - when you’re already questioning what gives you the right to live and why they had to die. Who are you to have survived? You lived. It’s scary. Living is scary at the best of times, let alone after cancer. It doesn’t mean you’re better than them, or that you deserved to, or that you somehow can give more to the world than they could. You aren’t beholden to anyone to BE anything. 

Of course, you have an opportunity to create a life you love and change things you might regret, but you don’t have to do that right now. You need space to heal the emotional wounds that you couldn’t do when your physical health took precedence. That emotional work is much more jumbled. It’s not a straightforward treatment plan like chemotherapy/radiation/surgery. It’s also tied up with unconscious biases and beliefs that you may not even know you’re carrying. It requires strength, just like cancer treatment; it will hurt you, just like cancer treatment; and you’ll wonder whether it’s worth fighting for, just like cancer treatment. Unlike cancer treatment, you won’t come out the other side feeling empty, lonely, guilty, or shamed. You will have navigated the waters and worked out who you have grown into - then goals and purpose will become easier to define and life will once again have meaning. 

So, for those still fighting - please don’t give up. For those in remission - please be kind to yourself, you are changed, not doomed; find a therapist you trust, or someone to talk to, to help you unjumble your narrative and do the emotional work in your own time. For those in the clear - please share your stories, those fighting, those in remission, and us non-cancer folks need to hear your voices so we can understand the length of your journeys. 

For the rest of us - it’s not as easy as ‘beating cancer’. Survival is complicated, in every domain, and living after trauma is not as easy as slotting into one’s old life. Be there even when the ‘bad stuff’ has ended; that’s when people need you the most.

Healing the physical is the first step; healing the emotional comes later. 

You are not a failure for not being ok. 

End Note:

Writing this has been really emotional… trying to put myself in the shoes of a survivor has brought me to tears a few times.  I hope this starts conversations. Not just about cancer survival, but about traumatic experiences of all kinds. It's not as easy as coming back into the world and being happy; recovery from trauma is both physical and emotional, and the emotional often requires a re-writing of internal narratives that you may not have even released existed. 

Sophie Gray 

Think Gray Psychotherapy

sophie.gray@thinkgray.com

www.thinkgray.com