WHEN Helen McGonagle recovered from breast cancer and got her energy back, she was keen to contribute what she could to cancer research.
Breakthrough Cancer Research is inviting cancer patients, survivors and their families and members of the public from all walks of life across the country to get involved in its Public and Patient Involvement (PPI) panel.
“I was keen to contribute what I could to cancer research in acknowledgement and gratitude for all the expertise I had benefited from,” says Helen.
A ROUTINE CHECK-UP
Helen, 54, from Ovens, got a shock when she was diagnosed with breast cancer a few years ago.
“I was just 50 years old and I had absolutely no symptoms,” says Helen who is mum to Daniel, 27, Hannah, 25, James, 22 and Katy, 20.
“It was my very first free mammogram and I nearly didn’t go.
“It was the time of Hurricane Ophelia. It never crossed my mind to get checked.
“When I got checked I got a letter the following week to go back for a second mammogram, saying that it may be necessary to return for a biopsy.
“The letter was worded in very comforting terms, stating that 90% of second mammograms show up nothing.”
Helen’s husband, Joe O’Sullivan, accompanied her for her second mammogram, when she also had a scan.
“They were concerned and asked to do a biopsy; this was all on the same day. The service that the Breast Clinic provides is fantastic.
“I went home afterwards to await the results one week later, to find out if the lump was malignant or not and if I would require surgery. It was a lot to take in.”
When Helen and Joe returned to the Breast Clinic, they found out the lump was malignant.
“I’d need to have surgery,” says Helen.
“They didn’t say I needed a mammogram or a lumpectomy or whether I needed chemotherapy or not, until the lump was analysed, but I would definitely need radiotherapy. I was hopeful that I wouldn’t need chemo-therapy and that the radiotherapy would be enough.
“The surgery was scheduled before December 15. I didn’t know the size of the lump. I remember Katy was in a school show the first week of December and my parents were coming down from Co. Meath to stay with us. I hadn’t told anybody. I had my surgery and I went to the show that night.
“When I was being discharged, the nurse gave me a sling as if I’d sprained my hand and it didn’t touch the affected area.”
After Helen’s lumpectomy, it was discovered the lump was malignant.
“The lump was sent to the USA to determine if I needed chemotherapy or not,” says Helen.
“There’d be no results until after Christmas so I forgot about it. I was assured they had got all the cancer cells.”
What was it like over Christmas?
“It was a strange time,” recalls Helen.
“I still hadn’t told anyone. When I found out I needed chemotherapy it was a bit of a blow. The treatment started on January 15, 2018. I had to tell people then.
“I received great care and the Breast Clinic system is amazing. I didn’t go back to work in the music library after Christmas. I went for chemotherapy treatment and the support from the CUH was fantastic.”
Helen had a new routine.
“I got used to the treatment routine and having the tea and sandwich afterwards.
“My hair did go after two weeks and, even though I got a wig, I didn’t wear it much!
“I took steroids the day before the treatment and the day of it. You’d be flying for one or two days and then crash and sleep for two days, and then you build up to the next treatment.”
Helen took the treatment in her stride.
“It wasn’t as horrific as I’d been afraid of,” she says.
“The treatment went on until mid-March and by mid-April I was half-way right.
“I received radiotherapy treatment from the end of April until the end of June - every week day for five weeks.
Helen wasn’t out of the woods yet.
“The next stage was hormone treatment,” says Helen. “My tumour was oestrogen driven and I was prescribed Tamoxifen to block the oestrogen. I went into medical menopause overnight which was very shocking.
“The Tamoxifen caused side effects like dry eyes, night sweats and sore joints that impacted my daily life.
“Professor Seamus O’Rielly changed the medication to Aromatase, an inhibitor that has the same effect, blocking oestrogen.”
Helen was well on the way to a full recovery.
“I went back to work in October, 2018. That was a good day for me. I started off part-time and then built up to four days out of five days a week.”
Helen was anxious to give something back after all the wonderful care she received going through her cancer journey.
“Joining the Breakthrough Cancer Research PPI panel has introduced me to like-minded people who have had first-hand experience of cancer in varying guises,” says Helen.
“I find talking to people who have had such an experience both supportive and comforting.
“Also, I like the idea that I am in a small way paying back the cancer research community for the excellent treatment I received as a result of their work in the past.”
It is important for cancer research funding bodies to have a PPI panel.
“PPI creates a type of partnership between cancer researchers, funding bodies and those affected by cancer and helps support the dialogue or connection between researchers in terms of their own insights or connection with their research - it takes the research from the theoretical to the practical.”
Why should other people join the PPI panel?
“It is essential that the voices of cancer patients, those who have recovered from cancer and their families are heard by those involved in the research process,” says Helen.
“These voices provide the lived experience which is so important in informing the decisions on funding and the researchers’ amazing work.”
MORE ABOUT THE PPI
Breakthrough says PPI involvement is important in research and wants to emphasise the fact that those interested do not need to have been affected by cancer to take part.
The charity’s research manager, Dr Frances Drummond, explains what taking part involves.
“The aim of PPI is that cancer research is done ‘with’ people and not ‘to’ them. I am fortunate to work closely with Breakthrough’s PPI panel.
“These amazing people can and do get involved in all aspects of our research department to different degrees, depending on what is right for them.
“What is lovely is seeing their confidence grow as they realise how important their lived experience and opinions are to the research project.”
If you would like to get involved in Breakthrough’s Public Patient Initiative and help improve cancer research, treatments and care, please complete the online form on breakthroughcancerresearch.ie or contact Dr. Frances Drummond on 021-4226655 of email@example.com