Mind & Body: Penny’s story

Caring for your mental health during long-term physical treatment is vital, but what happens when you enter remission? Penny shares how the RE-EDIT tool Compass helped her recognise the importance of her own mental wellbeing on the road after remission.

Watch Penny's story

Pennys story

Read Penny's story

The diagnosis

In early 2014, I began to notice a dull ache in my left breast.

Although I saw my GP straight away and had a mammogram which indicated that I was clear, the pain persisted. Soon after, I could see a ‘dimpling’ of the skin and felt a small lump when I examined it with my fingers.

On December 1 2014 I was diagnosed with an aggressive breast cancer called Invasive Ductal Carcinoma.

As a person, I’m a ‘do-er’. Two days after my diagnosis I went back to work until my treatment started, mainly to keep busy but also to keep the household as normal as possible. I’m a mum of two children who were in secondary school at the time so I felt it was important to maintain a routine as much as possible.

Within two weeks I began undergoing chemotherapy and had two surgeries, including a mastectomy. This was followed by months of radiotherapy and the start of a 10-year course of hormone therapy.

My husband was my rock and he came to every treatment with me. At the time, I was fixated on getting back to work, as to me this this signalled a return to normality. I returned to work in Sept 2015 but reduced my week to four days, with every third Monday off for treatment.

In February 2016 I had my final treatment and later received the much-awaited confirmation that I was in remission.

Finding it hard to cope

What I didn’t anticipate was the long-term effect the diagnosis would have on my physical and mental health.

I’d only had one session with a counsellor after my treatment finished. And being forced into a chemical menopause at 46 and dealing with hot flushes, fatigue, weight gain, cramps and even a period of vertigo was definitely not something I was prepared for!

Whilst in the bubble of the health professionals I coped very well, but after February I was on my own. I looked exactly as I had before treatment (my very short hair grew back quickly) and friends and family were quick to comment on “how well I looked” and gushed “you’re so brave and positive, you beat cancer!”

But inside I was not coping. I remember a trip to Paris for our wedding anniversary in May 2017. I was exhausted, from work, from being a mum, from what I now realise was anxiety over the constant fear of the cancer coming back.

Although my healthcare professionals were fantastic in terms of looking after my physical wellbeing, I can’t remember any advice being given about the long-term impact this diagnosis could have on my mental health. I was offered one session of non-specific counselling which just wasn’t effective. 

Getting direction from Compass

Having lived with a cancer diagnosis for nearly four years, the active treatment was in fact the easiest part. Living with the constant fear of “it” returning can be all consuming on some days. Having the right mental health support to manage this overwhelming feeling was vital.

I contacted Compass after seeing their promotional content on Breast Cancer Support group Facebook page. They sent me helpful resources to read through and exercises to complete.  I can say without exception that each task made me think how my life had been impacted by my long-term condition and how I was not coping.

I was able to use skills I gained from Compass to give me the courage to speak with my husband and children about my fears and physical health issues which ultimately led me to take the necessary step to resign from my job and refocus my priorities away from work and into my family.

Using Compass gave me ‘permission’ to finally move on and accept that my life before cancer won’t come back, but that life after cancer is different and that’s ok!

I’d like to take this opportunity to urge everyone caring for a person with a physical long-term condition to consider how it might be impacting their mental health and to take action to ensure they are getting whole person care. Learning and using Compass’ skills me has changed my life.

Visit the Compass page on our website to find out more about how the Mind & Body project is caring for the mental health of people with a physical long-term condition.