For some time now I’ve been mulling over the reasons why my mental health sank to such a low in the months following my discharge from hospital – note I didn’t use that illusive all clear term, we all know that’s a fairy tale – and believe it or not I think I’ve worked it out.
My last hospital appointment specifically related to the end of my treatment for breast cancer was with an oncologist I’d never met before. A lovely oncologist, but an oncologist with whom I had no previous relationship whatsoever. An oncologist to whom I didn’t feel comfortable voicing the dark fears or the night terrors or the nub of anxiety lodged in the place the cancer used to be. No. I let her thoroughly examine my breasts, tell me she couldn’t feel anything to worry about at that time, reinforce to me the need to be vigilant about checking my breasts and tell me that I had an open appointment as and when I felt the need. That was it. The next contact I would have with the hospital would be three months later for a mammogram a year to the day I had my mastectomy. I reiterate; that was it.
That was also the point at which my mental health started going downhill but I didn’t have the skills – or more importantly the information – to recognise that. There was a vital opportunity missed.
It has long been known that breast cancer survivors are likely to develop symptoms of Post Traumatic Stress Disorder. A recent study even found that 82.5% of women diagnosed with breast cancer will suffer PTSD in the first year following diagnosis.[i] Thankfully it lessens considerably after the first year, but this is not the point.
When I walked away from the hospital that day little did I know I was on the cusp of the darkest, most difficult period of my life. That my relationships with my husband, children and dearest friends would be pushed to the limit, and that I would become – at times – what can only be described as a monster.[ii] I was, I understand now, suffering PTSD. And I am not alone.
Since my diagnosis I have met many people from different walks of life. It has been a privilege to meet these people, I wouldn’t have met them if I hadn’t had cancer. But don’t bother waiting for the I’m really glad I had cancer stuff; you won’t get it from me.
I don’t care if that sounds harsh, it’s true, sometimes we forget that cancer actually kills people. Because we spend so much time talking about fighting battles, winning wars and telling cancer to jog on we don’t think so much about the people we are losing every day in their thousands. We don’t think about the woman in the chair opposite me during chemo who died a few months before her daughter started secondary school. We don’t think about the man whose throat cancer was so bad there was nothing anyone could do for him. We don’t talk about the thousands of women out there with secondary breast cancer which is slowly killing them. That cancer kills is, in a funny way, a bit of a secret.
We’re not really supposed to talk about it because we don’t want to face the fact that cancer isn’t about pink ribbons, midnight walks, muddy races and fairy wings. We’re too fearful to see cancer for what it actually is – a cold blooded killer – so we attach mascots and fancy dress to ourselves in the name of ‘winning’. But the reality is none of us are winning at all; indeed, a lot of us are sinking.
And this is where the PTSD comes from. I don’t know about other cancers because I haven’t researched them but I do know first hand about breast cancer and I know that the moment I was diagnosed I feared an early death; I still do. I always will.
I firmly believe that my own PTSD could have been considerably lessened if only a little more thought were put into post-treatment care. It ought to be relatively simple. In theory.
The first description I thought of for the thing I have in mind is an Exit Interview. I said this to a friend and she said it was too reminiscent of death so perhaps I ought to think of a different term. I’m still working on that but I’m kind of leaning towards something with the word wellbeing in it. Wellbeing Interview? Too formal? Maybe. Feel free to offer suggestions.
Here’s the thing. The deterioration of my mental health could have been stalled or slowed if I had had a clue PTSD might hit me. If, on the day I saw the oncologist, or at least around that time, I had been given the opportunity to chat to someone about life post-treatment and had been forewarned about what might happen I’m pretty sure I wouldn’t have fallen as far as I did. All I needed was someone to give me half an hour of their time in a private space to explain that the end of cancer treatment could signal the beginning of mental health concerns.
It wouldn’t have taken much. It wouldn’t even need to be health professionals responsible for it, it could be done through cancer advocacy. The best people to tell you what having cancer really feels like are the people who’ve had cancer, it doesn’t take Einstein to work that one out, and I know that there are thousands of us out there who want to make a difference to other people.
I don’t know how exactly I’m going to go about this, but I’m making it my mission to change post cancer treatment care for people affected by breast cancer. Not only do we need more provision, we deserve more provision. It could be done on a voluntary basis, we could do all the training ourselves and we could share our knowledge and experiences to benefit other people.
Just think how many people we could save from falling off the cliff because we’ve given them a branch to hold on to. Just think how one short meeting could stop someone from having suicidal thoughts or manic episodes. Just think how many families would be prevented from suffering the pain and helplessness of watching a loved one in despair because that loved one had the right phone number to call or support group to go to or email address to contact. It sounds so easy doesn’t it? It should be easy. It could certainly make all the difference to a lot of people.
Watch this space.
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[i]http://psychcentral.com/news/2016/03/03/study-finds-most-breast-cancer-patients-develop-ptsd-symptoms/99941.html
[ii] http://baldybitesback.weebly.com/baldy-bites-back/monsters