Derry woman shaping the future of cancer care in Northern Ireland alongside members of the NI Cancer Experience Panel and Macmillan

The panel, brought together by Macmillan, recently won an ‘Outstanding Supporter Award’ at Macmillan’s ‘Thanks to You’ Awards 2023.

It was a fantastic accolade for the members, who were over the moon, but speaking to the Journal, Donna told how being part of the panel itself also feels like a win.

"Over the year or two that I’ve been in it, we’ve become a really tight unit. We recently introduced some new members and you’re always a bit nervous with that but, an hour into the meeting, people were sharing their stories and talking about their frustrations. You meet so many inspirational people. So, as much as it was fantastic to get the award, the real reward is the people you meet and the work we are doing.”

The panel is a group of people living with cancer, who use their own experiences and expertise to help shape and improve Macmillan’s services now and in the future.

Donna, a mother-of two who worked for the Western Trust for 25 years, was 47-years-old when she was diagnosed with Stage 3 cancer in March 2019 after a tumour was found in her bowel. She underwent major surgery and then chemotherapy at the North West Cancer Centre, which she describes as ‘absolutely amazing’.

“Surgery was hard and chemo was brutal. I have always described myself as the strongest of the strong and cancer broke me; it absolutely broke me. And it was such a shock, mentally. I spoke at Queen’s University about six months ago at a mental health event and I was saying to them that. obviously you go through treatment and it’s like: ‘you’re cured, you’re ok.’ But, that’s when it’s hits you and it’s really hard to live with cancer on your shoulder.”

Donna received huge support from Macmillan and she said the issue of mental health after a cancer diagnosis and treatment is something they’re really trying to focus on.

"That’s part of our work in the panel – to identify areas Macmillan can be doing better in and can be progressing, I am so proud to be part of this panel. I think Macmillan is maybe a wee bit ahead of its time and can see how important the voices of the people going through this are. Following my surgery and chemo, I studied nutrition and health and did a cancer coach course with an American group, to find out more about it and as part of my recovery. One of their quotes – I think it was from Einstein – was: ‘There’s no knowledge without experience’ and to me, that’s what the cancer panel is about. Macmillan gets it in that they can’t be making assumptions. They are actually wanting seats at the table and asking people where they need to spend the money. They’re investing in the patient’s voice. And then, through this work, we also work with the Trusts and have been involved in things such as service reviews, which are really important, and also speak to MLAs and all those who can also make a difference.”

Donna is full of praise for Macmillan’s NI Engagement Lead, Maura McClean and said the panel tries to represent as much as Northern Ireland as it can and as many cancers as possible.

"It’s a great feeling thinking that you’re making a difference for people that are coming behind you.”

Being part of the panel also gave Donna her confidence back, so much so that she now works for Macmillan.

"I had no confidence after cancer. I would be in Tesco and start crying or I’d meet someone and I was just really emotional. I ended up falling through the doors of Derry Well Woman. They were amazing and helped me so, so much. Through that and through joining the panel, I got back that bit of confidence and I could feel my voice getting stronger. It spurred me on to apply for the job with Macmillan, I know work as a Partnership Quality Lead with MacMillan Northern Ireland.”

Donna said that, for her, being told she needed chemotherapy was ‘devastating’ and she found that the compassion and care she received was a vital part of her experience and recovery.

"We always talk about the difference a hug makes. You can’t put a price on that. I remember during my own experience, I was in floods of tears and a nurse, who was on her way out, asked if it would be ok if she gave me a hug. That’s a stand out moment in my treatment and we always say that kindness and compassion is part of your care.”

The North West Cancer Centre staff, she added, were vital in that part of her care and she describes them as ‘superheroes.’

Macmillan, too, were an incredible support, not only to Donna but also to her family.

"They were able to give me lots of information and arrange different services and that’s a big part of it too – making sure that people are getting the information they need.”

Donna is ‘doing amazingly’ and gets reviewed every year. She changed her whole lifestyle after her diagnosis – ‘what I eat and how I live my life’.

"I started to look after myself a bit better, which is something we mammies don’t do sometimes.”

Her hope and that of the panel ‘is to give hope that there is something there after cancer.’

“The role of the panel is that, in retelling our stories, we must influence how people going through cancer can have a better experience and how our mental health struggles must teach how compassion and care really do make a difference. Our way back to feeling like ourselves again, or like a new version of ourselves, should give hope to the people coming behind us.,

"The story of our panel is simple. We are a group of people who have been to hell and back and who are trying to make a difference for other people, with Macmillan’s help. They gave me support and were able to signpost me to different things. They supported my family and I never would have had the confidence to for that job if I hadn’t had the experience of the panel.”