PVCR Patient Partner - Mary Staunton

My journey with PVCR

In conversation with Aoife Gordon, undergratuate medical student, UCD School of Medicine
Read time: 10 minutes

When did you first become involved with PVCR?

As far as I know it was their second event on campus. A colleague of mine saw it advertised and she sent me an email about it because she thought I would be interested. At that stage, I wasn’t long back to work after my treatment for acute myeloid leukaemia, which I had been diagnosed with in 2012. I returned to work in 2014.

I knew Elaine (Quinn) professionally because we are both communications people and we knew each other for many years through work. It was lovely to see a friendly face when I went to my first meeting. I sat down at a table and very quickly started talking to other people. I just got swept up in the day.

I wasn’t used to being in a group with others who had similar experiences to me. I had come back to work as a “cancer survivor” and everyone was so careful of me, which was lovely because I felt very safe and looked after. But it was wonderful to be in a space with people who had been through a lot of the same experiences that I had been through. Some had come through them and some were still living through them at the time.

There was a great warmth there and a great camaraderie. If you volunteer to go to something like that, you don’t go along and sit in the corner, you go because you want to be involved and be useful.

Can you detail your involvement to date?

I am a bit like the girl who can’t say no, so when I go to something, I invariably get a job!

Elaine asked me that first day if I would be interested in getting involved in the committee and I did. I am on the Communications sub-committee and we basically support Elaine. She is the woman with the amazing ideas and the drive, so we help out where we can and bring whatever practical help is needed.

For example, we needed to create a new identity. I deal with a lot of design companies in my day to day role and I spoke to one particular company who I had dealt with a lot about creating this new identity for us. The owner of that company knew the pain of a cancer journey with a close family member and wanted to give something back. He offered to help us on a pro bono basis which was incredible.

We got a huge amount of time from them and we got to share in their expertise. We eventually came up with a really vibrant identity. We looked at hundreds of words that epitomised the group and we whittled them down to about eight which form part of what the Patient Voice in Cancer Research is all about. They are the ones that are epitomised in the identity.

We had to have the courage to go with our ideas and know that it was the right way to go. We are really happy with it now, it looks bright and inviting and it has a lot going for it.

I also work with a lot of printers in my day job. I have a great relationship over a number of years with one who does a lot of work for me. So he was arm-twisted into doing our printing – again on a pro bono basis. So those are very practical ways I can help, as well as bringing my communications expertise to the table.

I also sit on the Management Committee and on the Steering Committee. So much of what we do and how we do it is about discussion and mutual agreement. It’s about bringing together the different voices around the table. It’s an atmosphere in which you are never afraid to speak up. You always feel that you can stay “No, hang on, I don’t like that direction, let’s think about it more” and you are listened to.

How is the dynamic between cancer researchers and patients?

It’s amazing to see the more senior members of the team, the directors and senior researchers, pop into our meetings all the time. I think that shows that they see and appreciate the importance of what we do. Ultimately, they view what they do as being of long-term benefit to patients.

It really is a circular discussion at all times. That was something that just wasn’t there before. Now, listening to the researchers talk and hearing their passion is just fantastic. When a patient says something, they actively listen and then they ask questions. When you’re living with chronic illness or when you’ve had an acute illness and you’re a survivor as I am, it’s very easy to feel that people don’t want to hear you talking about being sick all the time. Even though it is still a huge part of your life.

In my case, I still have lots of little things that are wrong with me, and they’ll just never be right, but I don’t want to talk about them all the time. You know, when COVID-19 came around I told myself that I’d better be careful because my immune system is still compromised. With some friends I don’t want to keep bringing it up because they just don’t get it.

But with this group, there is none of that. You know that all these people are either living with a chronic illness or they are survivors and they know what you have been through. It’s not a forum where we go in and moan about our aches and pains. But, when you talk about your experience and extrapolate that into something that helps the group, there is a general nodding around the table. You feel understood.

"There is an acceptance of the researchers, of their knowledge, their learning and expertise in their subjects. There is also an acceptance of the patients as having a different type of knowledge and expertise, as having the lived experience of the illness and the post-illness part of life too".

Did you know much about cancer research before this?

No, I really didn’t.

As part of the first meeting I went to, we were brought on a tour of the facilities in the Conway Institute. That was brilliant! Years ago, I had worked in Research Communications. They had gotten a new machine in Conway at some stage, I can’t remember anything about where it was or what it was. I was sent over to the Conway to take photographs of the machine and to talk to someone over there about it.

It all came back to me on the day of the lab tours. I hadn’t realised that this place was going to be so important to me later in life. To be honest, I didn’t know what it was when I was there the first time. It’s amazing how your perception of things changes when you go through an illness.

The tour was amazing, absolutely amazing. It was very real. They showed us what they do with the samples, how they cut them up, how they process them, how they read information from them. It was brilliant!

In all the talks I’ve been at, and I think I’ve been at every single one so far, there’s never been a time when I felt I haven’t understood what was said. The talks are always delivered in plain English and never over-complicated with academic language I don’t understand. I have found that the researchers have a great understanding of their audience.

What have you learned about patient and public involvement in research since becoming involved?

Prior to my involvement, I thought researchers were in a glass bubble, that they were very special and that they did things that nobody questioned. Now, I have learned that they are out there, craving information from patients.

They want to know “What effect does this have?”, “How does this affect you?”, “What do you feel and think about this?” They need all of that to feed back into their work so that there is that subjective slant to their research. I never knew that was there.

When I explain to my friends and family what I am involved in, they all think it’s amazing. It’s very tangible what we’re trying to achieve.

How important do you think patients’ voices are in the research process?

I think we are learning from the researchers that our voices are important. Throughout my illness, I wouldn’t have felt that my voice was at all important. For a long time during my illness, I didn’t even feel that I had a voice because I was very ill and weak. My sister was my voice and she was working with my best intentions in mind, but you do lose your own voice.

I have heard researchers come along and talk about what they are trying to achieve and you know, they really need patients to talk to them and share their experiences and that has been a real eye opener. It has been a transformative experience for me I have to say.

What personal value have you gotten from your involvement?

Meeting Amanda! That’s a wonderful experience for anyone to have, seeing the passion she brings to her work. It gives me great hope as a former patient to see that there are people behind the scenes who care so much about research and its immediate impact on patient care.

When you look at the various PPI communities that are now cropping up, everyone is realising the importance of them. We are starting to realise that people who have had the lived experience or are going through it do have a lot to add to the research process. The researchers have, I feel, come out of their bubble and realised that they need this very tangible information that patients can offer.

Would you encourage others to get involved?

I would, absolutely!

So many people are peripherally involved in a loved one’s cancer journey. I saw it when I got ill. My sister was my absolute saviour. All my family had a huge part to play and all of their families too. Every day and night I had someone coming in to visit me. I never asked, but they were always there, it was just amazing. My friends were amazing too.

Other people have to be involved in your journey, no matter how independent you are. I was in hospital for seven months, so it was a long time for people to keep coming to see me. Then, when I came home, I wasn’t physically able to do things for myself, so my friends came over and cleaned my house. They did my shopping and my washing, they were so wonderful and I will always thank them.

There are also other caregivers involved, take my GP for example. She had always been there for me but outside the inner circle. I would go to see her every so often or she would ring just for a chat. And all the consultants, nurses, pharmacists, physios, the myriad of people who support and care for you, you come to depend on them.

My journey with leukaemia was acute. I still have little things wrong with me that will continue for the rest of my life and that’s fine. There are people who are living with chronic illness whose journey will never really finish, they live day to day, whether on medication or on a course of treatment with no end in sight.

I think people in the periphery of your journey can learn more about you if they see you in the PVCR space because they can see how you’re interacting with others on the same journey. When I walk into a PVCR meeting room or event, I feel my shoulders go down. I just relax. I know that I am in a very safe space and that I can talk about anything.

We’ve all become very good friends at this stage, I have a very warm relationship with so many of the committee now, it’s so lovely!