I had my secondary diagnosis confirmed in 2016 straight after my primary treatment ended so I went from one massive hurdle straight into another one. No real time to breathe and ‘enjoy the moment’. Everything at primary stage is geared towards reaching the end of treatment and moving forward and when that didn’t happen for me, it was a huge set back.
My SBC story thus far has been fairly straightforward in terms of treatment lines as I’m incredibly fortunate to still be on my first line treatment of Letrozole. My bone mets have remained stable and my physical health has been fairly manageable. I don’t struggle every day with pain or stiff joints and only have occasional flare ups of pain so I consider myself quite lucky in that sense.
I wish I could say the same about my mental health. I have struggled far more with this day to day since the beginning and while I’m in a much better head space today, in the early days it was a very different story.
I had a procedure to have my ovaries removed a while back and while I had all the physical side effects explained to me, there wasn’t much said about the mental health side. I recovered physically no problem from the procedure but my mental health took a real tumble due to an increase in the stress hormone around the body and I didn’t understand what was happening to me. At the time, things got so bad, I had time off my work as I couldn’t concentrate on anything and was constantly in a state of stress and anxiety. Only when a kind soul at Maggie's Glasgow explained what was happening to me, did I start to understand that I wasn’t going crazy. I spoke to my GP and had a review of my medication and after a period of time, I started to feel more in control again.
I have always been an over-thinker - to my detriment sometimes, creating issues where they don’t exist - having too much time on my hands allows my head space to go off to places it has no need to be. My diagnosis seemed to turn up the volume on that particular trait and so I have often struggled to get that under control. Living from scan to scan is hard. How long will I be well? Everyone can say they don’t know what will happen to them but when you have an incurable illness, those thoughts can be ever constant in your head and it’s difficult to turn down the volume sometimes. It takes over and without a distraction, can really be detrimental.
Being stable for 6 years has meant that my period between scans has increased to every 6-9 months so I have more time to relax before the fear starts up again. I think the reason scanxiety exists for some is because it brings your biggest fear to the forefront. Progression is what you don’t want while living with SBC and so scanxiety is all those emotions together at once and the noise is so loud in your head until you get the scan results that it can become debilitating for some.
I am also someone who doesn’t like to admit I’m struggling - I use the phrase ‘I’m fine’ A LOT. I don’t want to burden anyone else with my emotions or thoughts, particularly as I know if I’m honest about why I’m feeling the way I do, it will be upsetting for that person to hear and I don’t want that for them or my relationship with them.
Joining the charity as a Patient Champion a few years ago was a massive help with my mental health as I had something to focus on and put my energy into. Helping others with my experiences has in turn helped me. Sharing my knowledge and being there for others has given me a focus that I need in my life. I’m far more positive today and have less down days and that is due to the online community. Having others in a similar position to you and sharing the burden of cancer with them has been so helpful and I would encourage anyone who has an SBC diagnosis to reach out and find a support group.
I’ve tried various different techniques over the years to help me through. Mindfulness being one of them. Some have worked for me and others haven’t. It’s important to keep looking and find one that works for you. I have apps on my phone that I use at night to help me sleep.
Another thing I’ve found very helpful is breathing techniques. Slowing down the breath when I’m anxious or nervous has really helped me when I feel overwhelmed. I’ve gotten better at this over the years.
Angie, from Direction Scotland had kindly filmed a mindfulness meditation for us and I believe it will be very helpful for anyone going through scanxiety or any other emotional moment while living with SBC. Distract yourself from those thoughts by focusing on something else - if just for a moment or two.