Guest blog: suffering from ptsd after breast cancer
I’m Lisa, age 45, married with two boys aged 13 and 11, a crazy spaniel and living in South Queensferry just outside of Edinburgh. I work as a Pupil Support Assistant in a local primary school which I love. I was diagnosed with invasive lobular breast cancer just before my 42nd birthday on 11th October 2016 (a date which is now imprinted on my brain forever).
There was no family history so it was a complete shock, not just to me but also to my family and friends. I needed everything thrown at it, starting with chemotherapy followed by a mastectomy and lymph node removal then 15 rounds of radiotherapy. As my cancer was oestrogen positive I’m also taking tamoxifen for the foreseeable future.
In January 2018 I had my reconstructive surgery (diep flap) which involved using part of my stomach to build a new breast. It was a big surgery with a long recovery but I’ve never regretted it.
I think for me once my active treatment was finished I knew I still had reconstruction to go through so it still wasn’t ‘over’. However once I recovered and returned to work in March 2018 that’s when I felt lost. I knew deep down that I hadn’t taken time to process what I’d been through but one day it would definitely all catch up with me. How could anyone go through all that physical and mental trauma and just go back to ‘normal’ as though nothing had happened?
However I carried on, keeping busy with work and enjoying an amazing family holiday to Florida (which, by the way, we probably never would have done unless I’d been ill).
It was as I was recovering and trying to get on with my life that my lovely friend Elizabeth was sadly getting worse. We’d known each other since school and she had been living with secondary breast cancer in her spine for 11 years at that time. Although she put up an amazing fight and was a true warrior, we eventually had to say goodbye on 9th October 2018, another date I will never forget. I was absolutely devastated and felt so angry that this awful disease had taken one of my closest friends who still had so much to give.
Only a few weeks later my father in law died and although it was a different type of cancer, it was again cancer that was the cause. I really felt for my husband then as he had been through so much seeing me so ill then had to deal with the death of his dad.
I think after all of that I just went onto autopilot and plodded on, kidding myself that I was fine even after all the trauma of the past couple of years. I didn’t let myself think about any of it for too long and kept pushing it all deep down inside of me.
It turns out that’s not the way to deal with trauma (which I knew all along really). I got to the end of August 2019 which was about a year since Elizabeth had told me her cancer was in the lining of her brain. I kept taking myself back a year thinking about what was happening at that time and reliving it all. I really struggled for that whole month, feeling tearful, anxious and unable to properly concentrate on anything. Not only did I miss my friend, I also felt extreme guilt about the fact that I was still here and she wasn’t – how was that fair? Eventually I broke down in work one morning and I realised then I was going to have to get help. Emotionally I was struggling but this was making all the physical aches and pains I’ve had (since treatment and starting tamoxifen) seem worse which in turn would start me panicking about my cancer returning. It was basically a vicious circle that I couldn’t seem to get out of. Thankfully a colleague told me that our local health centre had a mental health nurse available and I could just phone and make an appointment. It took me a few days to pluck up the courage but I made the call and got an appointment for a couple of weeks later. The second I put the phone down I already felt like a bit of the weight on my shoulders had eased and I was so glad I had done it.
When I walked into Cindy’s room a couple of weeks later the first thing she said was ‘how are you’? This resulted in me completely breaking down and being in tears for the whole appointment which lasted just over 20 minutes! I managed to tell her how I was feeling and what had happened over the past few years. October is definitely a trigger because it was the month I was diagnosed, the month Lizzie died and also the month she was diagnosed. Add to that it’s Breast Cancer Awareness Month (it’s everywhere you look) and so I just find it a really difficult time. The relief I felt when Cindy reassured me that how I was feeling was completely normal was unbelievable. From what I was telling her and how I was acting she told me I was experiencing Post Traumatic Stress Disorder (PTSD) symptoms. Over our three meetings we discussed ways to help alleviate my anxiety and look at things in different ways. Simple things like giving negative thoughts only a certain amount of time out of your day, say 15 minutes, to worry about. Use that time to think about whatever’s causing the anxiety then push it away and move on. Easier said than done sometimes but still something worth trying.
Short meditations, gentle yoga, breathing exercises and keeping a diary are all things that I do which have helped. Initially I was writing in my diary every day but now it’s maybe around once a week or sometimes less it just depends. Getting out for good long walks with the dog helps too and it’s exercise at the same time.
One thing Cindy said to me that struck a chord was that even though I’d ‘won the war’ I was still standing in the battlefield waiting to be attacked all over again. It definitely got me thinking, if I carried on this way then cancer was effectively still winning and I wasn’t going to let that happen.
She also said that although I miss Elizabeth every day and feel so angry that she had been taken so soon, another way to look at it was to be grateful that I’d known her and had her in my life. I also know deep down that she would never want me to feel guilty for still being here. As Cindy said I’m still here so embrace it instead of feeling guilty about it. Again easier to feel like that on some days than others but definitely a positive take on it all.
The fact that I’ve signed up to do a Skydive for Breast Cancer Now I think is proof that I took on board what I was told! I’m also in the process of meeting with my local MSP to discuss getting the minimum screening age reduced from 50 as I’ve been made aware of so many women much younger than this being diagnosed with this awful disease. I just feel the need to do something, anything to try to help, and if that makes me feel better then why not?
So, the main message I want to try and get over is that if you’re struggling mentally in any way, please please reach out. It doesn’t have to be a professional, it could be a friend, family member or colleague. Just talking things over can help and hopefully make you realise that even if things feel rubbish they will get better. Not overnight that’s for sure but eventually things will start to get better. Please just remember to be kind to yourself, you’re definitely worth it!