On a number of occasions, I have spoken privately to other survivors about my journey after breast cancer. Quite often, the reaction I get is not of surprise, but rather, it’s a knowing look of complete understanding.
It’s a story we prefer to keep to ourselves or our community, because who would ever believe that in the beginning, survivorship could be the worst phase. I have heard it described as being a “warrior without a war”.
The Tears And Fears
When you’re diagnosed, you’re in shock! No surprise there, but you have so much support surrounding you that you have plenty of arms to hold you and shoulders to lean into. Loving family and friends, doctors and nurses, all come to your aid to ensure that you have the very best care and chance of survival. This phase is quite often a blur of doctor’s appointments and consultations with specialist after specialist.
I like to call this the fears and tears phase. The tears just come and quite often they aren’t yours. They are the tears and fears of friends and family who are trying not to think about life without you. Then your own tears and fears about the uncertainty that lies ahead of you and the role you never signed up for.
Then you enter into treatment. This isn’t so bad, because at least you’re busy. If you have chemotherapy, you live your life in cycles. The period before chemo, being wiped out after chemo, and then the best you feel is just before you have chemo again. Then the cycle repeats. It feels like being on a merry-go-round, you just go in rounds not really stepping forward.
The merry-go-round actually helps because you don’t think too far ahead and you don’t look back—there is no time and no point, because it looks the same and it’s all about getting through this cycle. You just focus on the period between now and your next chemo. Short-sighted maybe, but it’s your lifeline at the moment and one you’re holding onto tightly.
Crash And Burn
When treatment finishes it all changes. You have a lot more time on your hands and you aren’t quite sure what you are supposed to do with it, nor are you quite sure what you are waiting for anymore. It’s the time when you feel the most lost. I decided to spend some of this time in bed! Well, a weekend anyway! Now I understand that probably wasn’t all that constructive, but you just don’t know what to do and it’s an intensely lonely period.
You really don’t want to talk to anyone about it. The guilt comes—shouldn’t you be happy that treatment is over and that you’re alive? Then why do you feel so bad?
Then you decide it’s time to talk about it, so you try to bring it up with a friend and their reaction surprises you when you are told that, “you just need to get on with it!” Get on with what exactly? Note to self: don’t talk to anyone else, as no one understands! The loneliness just gets worse.
All By Myself…
There was so much information around when I was diagnosed, but nothing now. The world it seemed had gone suddenly silent.
As I usually did, I picked myself up and dusted myself off and fought to move forward again. I also knew that when I sorted out how to, I had to help other women through this phase as well.
Dilemma Of Survivorship:
The Return Of Tears And Fears
I have spoken to survivors of war, childhood abuse, motherhood, fatherhood, losing a parent, losing a child, redundancy at work and each story has a familiar tone to it.
While you don’t want to seem ungrateful for the opportunity that you survived when so many haven’t, you just don’t know what you are supposed to do now. You don’t know how to shake the tears and fears phase that returned. But this time it’s definitely yours!
This is a time you need as much, if not more support, now than ever. Well meaning friends and family just want life back to the way it was because that’s where you were well and things were “normal”. That’s where nobody has to think about living life without you or the pain you are feeling.
There is a way out. This is how I fought my way through when the tears and fear returned.
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PS the image above is me clearly I have faced fear enough not to be scared on the old bamboo bridge in Laos! 🙂