Meet Our Ambassadors: Cheryl

I am currently 56 years old. I was a Major Crime Forensic Advisor but retired three years ago after a stroke and a 2nd primary cancer diagnosis. I am married to Kevin, who is a rector of a large parish in Belfast and also a Canon of Belfast Cathedral. I am very proud of my two boys who are aged 25 and 20. 

1. When/How were you first diagnosed?

My journey with breast cancer started about thirteen years ago when I discovered a lump in my left breast. I went to see my GP who, after an examination, told me that it was extremely unlikely to be cancer as I was too young (age 42), breast cancer did not present with pain (which I had) and the lump was ‘mobile’. All incorrect as you know!!! It was triple-negative breast cancer.

In 2019 my world fell apart again when I suffered an acute ischemic stroke. It was only through early diagnosis (FaceArmsSpeechTime) that I was able to make a reasonable recovery. A few months after the stroke my instinct was that ‘something else’ was wrong. Following some tests early signs of pre-cancer ie Ductal Carcinoma In Situ (DCIS) were detected. No follow-up treatment was deemed necessary, and I was told that I had as much risk of developing breast cancer again as anyone else in the general population!!! 

As we know this was completely untrue: someone that has had primary cancer has a 30% risk of reoccurrence. I requested genetic testing to ascertain my future risk. This was actively discouraged, by my consultant, as I have no known family incidence of female cancer, but I persisted. Eventually, it was authorised, and the result confirmed that I was a carrier of the inherited altered BRCA 2 gene. I was now deemed to be at significant risk of developing further breast cancer and ONLY then was I referred to a Higher Risk Breast Unit for further tests. This was about ten months after the DCIS.

On the 26th of November 2020, I was informed that I had secondary breast cancer (SBC) and would be on palliative treatment for the rest of my life. I had multiple tumours in my lymphatic system, both lungs and spine. My life expectancy was deemed to be between nine months and two years.

2. Could you please tell us a little bit more about your personal story/experience of living with secondary cancer?

The day I was given the news I had Secondary Breast Cancer there was no nurse, no box of tissues, no supporting literature. My husband and I were told the news and advised to go home and tell our two sons. (it was my youngest son’s 18th birthday). The consultant then left the room and we just sat and looked at each other. Throughout my journey with SBC, I have experienced inequitable services not only because I live in NI but also because I am a patient with SBC and not Primary Breast Cancer (PBC) e.g., There are currently no trust-funded SBC nurses in NI. So, at a time when you actually need it most, there is no one there. M2C helps to fill this gap.

3. Did you find it easy to access information and support following your diagnosis?

I felt written off with absolutely no support and the literature seemed to be geared towards PBC patients and recovery. The only information I was ever given was regarding the side effects of my treatment. 

4. How did you first hear about Make 2nds Count?

I first heard about M2C through a childhood friend who also had an SBC diagnosis. I became part of a very small group of women in NI who were living with this disease. We met up when we were able to during the COVID pandemic and completed the M2C dance challenge. This small group of women has grown from 6 to 78. 

5. Can you tell us a little bit about your relationship with the charity and why you have become an ambassador for them?

As you all know PBC is very different to SBC so, when I discovered that there was a charity that was totally focused on those living with SBC, I wanted to know more. The more I found out, the more I wanted to support the charity. In August 2022 I ran a fundraising event, which was sponsored by my son’s employer, a Belfast recruitment company called MCS. The event was called ‘Second Look’ and the proceeds were donated to M2C and ‘Seen to be Heard’. ‘Seen to be Heard’ is a fulfilment of a promise that my photographer friend Jennifer Willis made to me, that she would help raise awareness of SBC following my diagnosis. Jennifer initially photographed me bearing my scars but also managed to capture my emotion. I subsequently became the ’face’ of the exhibition. The exhibition was first hosted by Belfast Exposed in April 2022 with images of sixteen girls from NI. It is also accompanied by audio of us telling our stories. The exhibition has since been hosted in Dublin Civic Centre, Strule Centre Omagh, Lakeside Arts Centre Nottingham, Francis McCrory Fine Art Gallery Forrestside Shopping Centre, Belfast and is currently showing in Camden Street, Dublin. In 2022 we were hosted by the chair of the NI Health Committee at Parliament Buildings, Stormont where we presented a manifesto for change. The women, whom I introduced to Jennifer, are all part of M2C, NI. The exhibition now includes images of twenty-three women and will grow further when Jennifer and I travel to Dumfries, at the request of M2C, to photograph women on the mainland. 

My relationships with M2C and ‘Seen to be Heard’ are now entwined.   

I was also at the very first M2C ‘Tea and Chat’ held in Belfast and have seen it grow as more and more women hear about M2C. I never miss an opportunity to advocate for the charity especially whilst sitting in hospital waiting rooms. I am also on the organising committee for the first official NI M2C event, Love your Tribe, Ladies Lunch, due to take place in Belfast in September. 

6. What have you learned about yourself while living with SBC? 

After the shock of the diagnosis and the harshness of the initial treatment, which left me extremely sick for a number of months, I have moved on. 

The reality of SBC means that you live from scan to scan, treatment to treatment etc. It is a very misunderstood disease, even by people in the medical profession, and there is very little support provided compared to that given with a PBC diagnosis. If you are currently living ‘well' with the disease, which I am, you are in no man’s land… having palliative treatment but not included in the palliative ‘care’ system. I am OK but many others struggle both mentally and physically. M2C fills the gap and provides a safe space to make links and form friendships with a community that completely understands what living with SBC actually means. 

7. What would you want to tell other patients – whether at the start of their diagnosis journey or those further along into living with secondary breast cancer?

I want to tell others that there is always hope. Having an SBC cancer diagnosis does not mean that your life is over. We learn to live with a different mindset and you certainly get a new perspective on things. When we hear about new treatments and trials, we are grateful and hope that there will be one that will suit our type of breast cancer. NO trials are currently offered by the NHS to NI patients living with SBC but M2C can provide information regarding suitable trials on the mainland. 

When I started my journey things were bleak and I was given nine months - two years; the doctor wouldn’t even tell me how many tumours I had because I had so many. My last scan showed no sign of metastatic disease…. how long will this last???? Well, that really is the question… I have no idea, but I intend to live every minute to the full and hopefully help some others on the way.