PVCR Patient Partner - Teresa McNally
My journey with PVCR
In conversation with Aoife Gordon, undergratuate medical student, UCD School of Medicine
Read time: 4 minutes 30 seconds
When did you first become involved with PVCR?
I am a member of Family Carers Ireland. They got a call from Dr Amanda McCann one day and asked if I would be interested. I had given my story at an event and it had appeared in the paper.
This was in October of last year. Then I went to the Galway event. I had been involved in cancer through my own journey and my husband’s so I could have sat at any of the tables at the Dragon’s Den event.
There was a lot going over my head because it was my first experience of this. I’m an ordinary joe soap who has been affected by these things. I wouldn’t have the medical background, but I can speak to the practical side of things. I haven’t expressed much yet, but I am waiting to find my voice in the group.
Can you detail your involvement to date?
I am on the Steering Committee. I was at the Dragon’s Den event in Galway and it was amazing. I was overwhelmed by a lot of the stuff.
It was nice to touch base with people who knew a lot about the situations that we had faced. There was a lot of talk about it from a clinical point of view. I was very impressed with the people there I have to say.
How do you find interacting with the clinicians and researchers?
I find it difficult. When my husband was diagnosed, they never used the word “cancer”, it was a “lesion” and a “tumour”. I never knew what an oncologist was. It took me ages to pronounce the word because it had never been in my vocabulary before. So, I found that strange.
I am learning all the time about clinicians and various other people involved in research. I am learning how to approach the subject and how to approach families.
How did you find more information in those early days when you were presented with words you didn’t understand?
Some of it I looked up on the internet. Some of it I just pottered along with and listened. Not everything went in.
My husband took himself off to the hospital in 2015. He had back pains and was a heavy smoker. I didn’t know things were going to be as severe as they were. He was only in his 50s but he was told he had only three months to live. He was diagnosed with lung cancer. That was a shock.
I didn’t actually believe the professionals. I have learned that if I get a shock, I need to take to the bed for a few days to get over the shock. Then I can think straight. I come to and put it all down on paper and see what way I can go from there.
When I went in to see my husband’s consultant for a meeting, I brought a pen and paper with me. I don’t know what I wrote but I wrote down everything that was said. That’s how I learned.
I asked them to spell words for me. I have no problem in saying, “It’s not my profession, I didn’t study it and I have no idea what I’m doing”. I like things to be explained to me.
Some people feel themselves inadequate to a professional person. I came from a generation when “bothering” a doctor, priest or consultant was seen as a bad thing. But I’m not that person. I don’t care how much I pester somebody.
You know, it’s through my experience that I have learned that asking questions is really is the only way I can find out things. They did spell words out for me when I asked them. They would see me coming and tell me before I even asked, which was good. I have respect for all of these people. They were very good to me.
"That’s what I would like people to speak up about, how they actually feel. Not what they want another person to hear. We are all learning".
You were a patient yourself too?
I am a very strong person but not everyone is. I’m not afraid of death and not afraid of being a patient. It was 2005 when my husband passed away.
In 2009, I was diagnosed with my own breast cancer on a routine mammogram. At that stage, I knew the words. I knew “oncology” and “chemotherapy” and all the rest. I had calcification and so I decided to have a mastectomy.
I had triple negative breast cancer. Sure, I thought that was great, three negatives, that sounded great to me. But it’s not. It’s better if you have a plus in there.
It took a lot out of me. The team who gave me the chemo were the same team who gave my husband his maintenance program. They told me that when they saw my name on the list that morning, they couldn’t believe it.
I lost the hair and wore a wig. I have lovely grey hair now though. I had no problems during the COVID lockdown trying to put colours in my hair!
You are very strong, how do you cope?
I’ve been doing tai chi since 1999 and I have a Grand Master in Zurich. I do my tai chi every morning.
If you want to live in the moment, tai chi is the way to go. You’re not chasing your tail and you’re not relaxed but you are in control of yourself. I know when I need my tai chi.