My post-cancer PTSD time-bomb

In this guest blog post, Shine community member Jen shares her experiences of post-traumatic stress disorder (PTSD) after breast cancer, and how these feelings affect her upcoming brain surgery for an unrelated condition.


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Meet Jen!

It seems that having cancer – and more specifically, months of treatment to be rid of that cancer – leaves you with a ticking PTSD time-bomb for future serious medical issues. No shit Sherlock, I hear you scream! I know – it seems obvious, doesn’t it? PTSD is just another one of the many, many things that nobody prepares you for when you walk through that hospital door after cancer treatment, merrily waving your goodbyes and looking forward to returning to your life. I had cancer at 36 and, touch wood, I am all clear so far. Given this diagnosis, it would seem pretty feasible that I might come up against another serious medical issue at some point. Why would nobody think to address the trauma of cancer? Mental health is yet another thing that sadly falls by the wayside for younger adults with cancer.

I’m sure that my experience of PTSD will resonate with others – and I hadn’t really dealt with, acknowledged, or understood the trauma until very recently. It makes perfect sense that what happens to us after cancer is going to be influenced by our experiences of diagnosis and treatment, just as all our other life experiences shape us and influence how we react and respond to future events.

I’ve learned that the actual ‘trauma’ of post-traumatic stress might be something that was not initially perceived as trauma. Trauma can be something that creeps up on you over time: it grows with you, in you and through you, slowly and steadily like a fungus. When you get diagnosed with cancer, there’s no time to deal with your feelings about it. Instead, you batten down the hatches and get on with getting through whatever you have to get through. There is a lot of information to take on board, but pretty much everything is out of your control. You are swept along on a rollercoaster ride from hell and when it ends, you are just thankful that you are still standing –  regardless of the state you are in, and the trauma that may have occurred along the way. You process your emotions in the months and years afterwards, and the trauma creeps up on you unexpectedly.

I have known for years that eventually I will need surgery on a slow-growing, benign brain tumour. It’s in a very awkward place. I have a condition called Schwannomatosis. It was diagnosed after cancer, so it seems that I am doubly special and unique! I have yearly scans and appointments with a specialist team of neurologists, and then I shelve it away for another twelve months and get on with living my best life. I’m pretty good at that! I genuinely don’t dwell on it. I had thought that this pattern would go on for many years to come so, other than the annual drama of getting a cannula into my chemo-destroyed veins (and a small amount of pain from time to time), I could almost live in happy denial. Unfortunately, in September 2018 this all changed: the little bugger had grown significantly in the past two years and if it continued, my eyesight would quickly become compromised. This means that I now need fairly complex and somewhat risky neurosurgery.

I am great at going to appointments and discussing all the details, from options to risks. But as I get closer to the operation, I’m not entirely sure how I am going to be able to let it happen to me! I know I have to, right? I know I do. It has to be done. It’s been planned and discussed, and I’ve been waiting for months. But the thought of having my body cut into again, damaged and broken, and drugs being pumped into my fragile veins? It just makes me feel nauseous, and that feeling triggers vivid memories!

It has been five years this month since my breast cancer surgery. Beforehand I had had four months of chemotherapy, and post-surgery I had five weeks of radiotherapy. My body has healed and my hair has regrown (sadly not my eyebrows, but I do have rather fabulous tattooed ones now!). I still ache though. I have radiotherapy damage in the bones and muscle on my chest wall, and I’m reminded of this when my kids hug me a little too tight. I have permanently painful toenails – first because they fell off during chemo, then from walking around the Isle of Wight (stupid me), and then from walking up Kilimanjaro (double stupid me!). I bruise easily, and my joints ache due to the drugs I take to keep the cancer from returning.

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Jen and her family

My youngest daughter has to hold my left hand rather than my right as she tends to tug and it hurts the back of my hand. My hand has never had a chance to recover from the onslaught of cannulas. I mention these things not as a sob story, but to explain that my instinct is to be very protective of myself.

I hate it when I hurt. I hate getting badly bruised if I clumsily walk into something. It makes me mad: disproportionally mad or disproportionally upset, depending on the situation. The thought of rocking up to a hospital voluntarily to check myself in for a lengthy, complex surgical procedure is obviously horrific – with or without the prior experience of cancer. Alongside these feelings comes an overwhelming, intrinsic, sense of self-preservation. I just don’t want my body to suffer anything more – it’s bounced back from so much, and I’m so thankful. This time it feels like I am choosing to do this to my body, and it will never forgive me!

Along with all these thoughts comes cancer guilt: the guilt that comes with survival when those with the same cancer and prognosis as you have gone. The guilt of remaining cancer free while friends get secondary diagnoses. The guilt of forgetting to be grateful every single day because there are people hoping for just one more day of life. The guilt of being stressed about one single surgery when there are people going through far worse in a desperate attempt to simply survive.

I have to have surgery. It sucks, but at least it isn’t cancer this time.

If you’ve enjoyed this blog, we’d love to connect with you! If you’re in your 20s, 30s or 40s and have had a cancer diagnosis, why not join our private Facebook group

2 thoughts on “My post-cancer PTSD time-bomb

  1. Jen, I read this also now having to deal with the mental health long term side effects of Breast Cancer. I had Breast Cancer in 2015 and believed I had ‘dealt’ with the ptsd side of things a year and a half ago when an incident lead to a very violent outburst. But no. Here it is again.
    I feel guilty that I am still here after many of the ladies that had treatment with me have long since departed and gained their wings, I hate that the treatment has robbed me of me. I am no longer me and I am struggling to cope with it. Being made redundant last year has now left me reeling with confidence issues and the health anxiety is through the roof. Th8ngs I could brush aside with logical thought pre-Cancer.
    Your blog post has rung so many bells with me plus it has co e just at the right time for me to once again be reminded I am not alone in feeling this way. So a big thank you and best wishes for you up coming surgery
    X

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