Derry woman who lost mother to rare cancer urges others to be aware of symptoms

Siobhan McGowan’s mum Joan Kelly passed away in December 2016, just over a year after she was diagnosed with the aggressive cancer Leiomyosarcoma.

Siobhan said the family never knew much about the condition prior to their mother’s diagnosis, but had followed the story of local man Paul Coyle, who was diagnosed with Sarcoma on his 27th birthday and passed away weeks later.

A charity was set up by Paul’s family in his memory ‘Paul’s Campaign’, and Siobhan has received support from them since her mother’s passing.

She shared her story for Sarcoma Awareness Month and urged people to take notice of the main symptoms - lumps, bumps, cysts or swellings.

“Mammy would never have been one to complain that she was unwell, she would have just battered on,” Siobhan said. “When she admitted she wasn’t feeling great, she had a swelling in her stomach and thought that she had a urinary tract infection.”

Three weeks later the swelling had not gone down and Joan’s stomach was quite hard. Siobhan organised a GP appointment for her mum and following tests a large mass was found in Joan’s stomach.

“Doctors told Mammy they didn’t think it was cancer but that she would need surgery to remove the mass in Belfast, as it was too extensive to do here. A multi-disciplinary team was appointed and Mum was told it would be major surgery, with a number of surgeons involved.”

The mass would be tested once it was removed and the surgery was scheduled for October, something which reassured the family that it wasn’t cancer.

“This was two months on and we thought it can’t be cancer and must have been a cyst or something because there was no real urgency. We were also naïve and didn’t think that cancer could really grow that big, that quickly.”

The tumour removed from Joan was a massive 16lb in weight and the surgeon told the family he had no idea what it was.

It took three weeks for the results to confirm Joan had Leiomyosarcoma.

“We were told it was a very rare and very aggressive tumour which normally spreads to the chest and lungs,” Siobhan said.

“I went home and looked it up on the internet, but I was looking for all the positive stories about Leiomyosarcoma and blocking out all the negative ones. My mammy was very positive and said if she got another five years she would be happy.”

In August that year, Joan became unwell again and her abdomen began to swell.

“The cancer was back, it was at an advanced stage and there was no more surgery on offer. My Mum said she was very thankful for the year she had, because she didn’t think she should still be sitting there.”

Joan was offered three rounds of chemotherapy, but was told if that did not work it would be palliative care.

“I was crying my eyes out and my Mammy, who could be really thran, told me ‘I’m still alive and I’m getting chemotherapy and I’m fighting, so dry your eyes now.’”

“The year we had after the surgery gave us time to come to terms with the fact that she was sick and she was going to die, though I wish we had known a prognosis from the start. She made the whole process very easy for me and planned everything.”

During the final round of chemotherapy, Joan became unwell and was admitted to hospital for a couple of weeks before returning home.

“She knew she was dying and that the chemo wasn’t working. She didn’t think it was going to be very long but was hopeful she would have another Christmas. On Christmas Eve she told me she was really, really happy and said she felt like she was going on holiday. She passed away five days later.”

To mark Sarcoma Awareness month Free Derry Wall will be painted yellow in the next week and the annual walk which turns the city’s walls into a sea of yellow will take place on July 27.

There will also be a fundraising event hosted by the Tattoo Lounge in aid of Paul’s Campaign and Team Sorcha on August 3.