PVCR Patient Partner - Ramon Whelan

My journey with PVCR

In conversation with Aoife Gordon, undergratuate medical student, UCD School of Medicine
Read time: 8 minutes 30 seconds

When did you first become involved with PVCR?

I was given notification of the meeting that was taking place out in UCD by the guys in the Irish Cancer Society. I have been working with them since 2009 as a peer-to-peer support. They suggested it was something I might be interested in. So I went along.

I didn’t know what I was going to but it turned out to be a kind of information session. At the end they asked if anyone was interested in getting involved and joining the committee. I thought it seemed like an extremely worthwhile initiative to help spread information, so I decided to get involved.

Can you detail your involvement to date?

Well I am part of the Steering Committee and we meet every two months. I attended the event in Cork last October in conjunction with the Cancer Registry. I spoke at the Patient Voice event in the morning and at the Cancer Registry event in the afternoon. I was also in Galway at the Dragon’s Den event. I was tasked with facilitating a table but ended up being a scribe too. I also got nominated to give feedback afterwards, so it was a busy afternoon for me.

Had you any experience of cancer research before becoming involved?

I hadn’t a clue! I would have been of the mentality that it all happened in America and that there was nothing happening here. I didn’t realise the courses were there and how involved the colleges were.

On top of that, I didn’t realise that there were working labs and not just student labs in the colleges. It was a huge eye opener for me.

Do you think you understand more about the research process now?

Absolutely! The thing that really gets me is how much work and time the researchers put in and how there is still no guarantee that the project will be a success. Funding is a huge issue too. Time and investment are two major factors which I would have known nothing about.

Even writing the grants requires a huge effort. At the moment, I am reviewing four grant applications for the Irish Cancer Society. There are three of us doing the patient end of things. We are reading through them and realising that there are weeks of work involved in just putting that document together.

How do you find the dynamic between researchers and patients at meetings? Do you feel that there is good communication and understanding among everyone?

Absolutely! That was the bit I was kind of wary of in the beginning. I didn’t want us to just be token members, needed to fill the quorum. We are anything but!

I even think the patients seem to be listened to that bit more. It’s good for us to be able to put a face to the researchers. It’s always said that it’s good to put a face to the patient but it’s very important for us too, we have to know who’s there fighting our corner.

In the beginning, I remember sitting around a table with researchers who were talking in very technical terms – this code number and that code number. Other people around the table were nodding and I hadn’t a clue. Now my confidence has built and I’m not afraid to interrupt them and not feel intimidated.

"I’ve found that by speaking out, there are always others who are on the same page as myself. Also, I find now that the researchers are much better and quicker at explaining what they are trying to say in terms I can understand. So it really has developed into a two-way dialogue".

How did you become involved with the ICS?

I was diagnosed in 2006 so after all my treatment and follow-up care, I started to wonder if I was the only one that was going through this. I rang the cancer nurse helpline wondering about this and they put me in touch with a guy who had been through something similar. It was great to bounce things back and forth chatting with him. You know, you’re talking to someone who has been where you’ve been. He was further down the path and it was really wonderful to see how well he was doing.

I thought that was amazing and it sounded like something I would like to get involved in. I was actually in work one day, reading the newspaper when I saw this tiny little article on the side strip of the paper. It was a note from the ICS looking for peer support volunteers. But when I rang, they told me that I had to be three years post treatment and I was only two.

As soon as I hung up then, I put a reminder into my phone for a year later. They told me later that the reason they want people to wait the three years before coming on board is that the majority of people are still in the “I want to save the world” phase after two years, and that was true for me. The extra year gives you perspective. They also put you through a training programme which is great.

I didn’t realise how busy I would be with it either. I thought I would only be dealing with people like myself, people with testicular cancer, but I’ve talked to loads of people. Sometimes a parent or caregiver would call and sometimes someone’s wife or girlfriend would call so I talk to loads of people.

One of the nicest things that has come from this is this story. Last Christmas I was sitting at home when I heard a message come in. A guy that I had talked to back in March had contacted me to say “just thinking of you at Christmas and everything you’ve done for me, hope you have a great Christmas!” It was so lovely, that kind of thing really makes it worthwhile.

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

I’m currently reviewing grant applications for the Irish Cancer Society. There are workshops down in UCD where students come with grant applications and patients read through them and offer advice. I find that quite beneficial.

Today, there are four grants waiting to be submitted. There are clear distinctions between those groups who really understand the PPI involvement and those who don’t.

There are those who say they are going to incorporate an advocacy group – meeting with them in the first few months and then giving them a shout in year four to help with dissemination. Then there are others who have engaged with an advocacy group prior to the application and are going to involve them in the steering process, checking up every three or four months to make sure the project remains patient focused.

There are different avenues you can take. Some are definitely better than others.

It might not be a popular opinion, but I don’t think the patient should take over. It is important to be involved in steering a project though. The researchers need to hear the patient experience to know which direction to go in.

I’ll give you an example. With the chemotherapy I had, all my hair fell out which wasn’t a big deal for me or for most guys I’ve talked to. But hair loss is a huge deal for most women. So if a researcher is dealing with testicular cancer, focusing on a side effect other than hair loss would be more beneficial. I think that’s where the patient voice comes in. Even if you’re only getting a fraction of the population’s experience, it’s still very helpful.

What personal value have you gotten from your involvement?

I suppose like everybody else, before you are affected by it, it is not a concern and it is not of interest.

When I was diagnosed, the last thing I did was go anywhere near Google. I decided to trust my doctor and medical staff – that’s what they went to college for. It was only afterwards that I started to have a look. I thought that if I read that the side effect of some treatment was, for example, a sore elbow and then one day I woke up with a sore elbow, I would start thinking the worst. Things like “that’s the side effects” and “this treatment isn’t working”. I just preferred to go into it blind.

On the other side, I started to think more about the anti-sickness drugs, I wasn’t sick during my chemo whereas other people were. Then I started to think “how did they know?”

So that kind of started my interest in it. My uncle was diagnosed about 25 years prior to me and my journey and his journey were completely different. His journey was horrendous whereas mine was alright in comparison. It was only then that I started to think about what had changed, and how it had changed and that’s really when Google came into it.

Then you’re down that rabbit hole and so many questions crop up about how and why things are different, and what else could be happening.

At the initial meeting of the Patient Voice, they said that they wanted to get patients in contact with researchers to see what they could do to help. Well, that hit the nail on the head for me! Tailoring research and educating patients seemed like the perfect match.

The lab tours that they did that first day in the Conway were incredible! They took out these slides of the sliced prostate and showed us the small piece they had to work it. That kind of thing really sparked my interest.

So on a knowledge base alone, I love seeing how the advancements that worked for me are being progressed on so that say, if any of my nephews were to get testicular cancer, their journey will be better than mine. In the same way that my journey was better than my uncles. It’s nice to pay it forward.

Would you encourage others to get involved?

Absolutely! 100%! It’s probably the best decision I’ve made.

I suppose the end goal is to make life easier for those coming behind us and if I can contribute to that in any small way, I’m happy with that.