It was January 2021 when Emma McGuinness’s mother discovered a lump on her daughter’s neck. Emma felt tired, but attributed it to the fact that it had been several months since her second pregnancy: “I actually didn’t feel as bad as I did with my first pregnancy.”
I didn’t realize it,” she says of the swelling in her neck. “It wasn’t until I turned sideways that it really stuck out. It was winter, I spent all my time in big wool sweaters.”
When she showed her husband Tomas a family doctor, he knew immediately that it was cancer. “It was so difficult for him. In the weeks before I was diagnosed, he was processing. When the diagnosis came, I was shocked and upset. He was able to help me because he had already processed almost everything.”
Emma, who lives in Oranmore, Galway, was sent in for a scan that took place two weeks later: “I just thought ‘this is nothing’. The guy doing the scan was very chatty the entire time and then towards the end he turned to me with a really serious face and said that was something I needed to take care of immediately.”
She was referred for a biopsy and was told that surgery was an option. “The word cancer was not used at any time at this time. It didn’t occur to me.” The results of the biopsy were inconclusive and surgery was deemed necessary.
“I was a bit panicked. They had said we wouldn’t do the surgery unless it was really necessary because of my pregnancy. There is a higher risk of miscarriage if surgery is performed under general anesthesia.”
The schedule was a bit brutal at this point. Emma, who is thirty-six, was only told she would have surgery on a Wednesday. Her twenty week scan was the next day, Thursday. She would have surgery on Friday.
“It was like being on a roller coaster. We’re talking about surgery and what that could possibly mean, then I went to my scan and lay there staring at the screen thinking is this baby even going to become a reality?
The operation during pregnancy was a real low point, explains Emma. When the anesthetist reads out the risks before the procedure, she describes how she started crying for the first time. “I was just so worried.”
Subsequently, Emma’s pain relief was limited to Panadol. “I literally couldn’t think of anything else. When that pain subsided after a few days, I felt like ‘something bad is coming’.”
The uncertainty at that time was extremely difficult. “I hardly dared hope that this baby would arrive safely.”
Emma has been diagnosed with Hodgkin lymphoma, a cancer of the lymphatic system that occurs when abnormal cells build up in your lymphatic system, particularly in the lymph nodes. There are different types of lymphoma, either Hodgkin’s lymphoma or non-Hodgkin’s lymphoma. About one in five cases is Hodgkin’s lymphoma, which can be treated with chemotherapy, radiation therapy, steroids, targeted therapies, and stem cell transplantation.
“It was like being on a roller coaster. Here we were at the bottom and then we had a prenatal appointment and found out it was a boy and we were just so happy.
A PET scan wasn’t possible due to the radiation, so Emma underwent an MRI instead, which showed another swollen lymph node in her neck and two in her chest. Further uncertainty followed as to whether her chemotherapy would begin during or after the pregnancy and, if so, how soon she would have to give birth.
“It was really tough: we just didn’t know where the finish line was, when the baby was going to come and what additional needs the baby might have if it came that early. It was like a roller coaster again. Here we were at the bottom and then we had a prenatal appointment and found out it was a boy and we were just so happy. We could really build on that.”
Tomas, as a GP, proved very helpful, “because I could ask his opinion and I could totally trust everything he told me. When it came to making decisions, it was almost easier for me to pass them on to him.”
Further MRIs showed that the cancer wasn’t spreading particularly quickly until nearing the end – Emma made it into the thirty-six weeks of her pregnancy. “In the beginning, I could never have imagined getting this far. I was just so excited even though I knew I was going to start chemo in a few weeks.”
Born in May 2021, Ruairi weighed seven pounds seven – “a bruise,” his mother proudly adds.
However, problems with his lungs meant he had to spend two weeks in the NICU. Emma had to leave the hospital after five days. “It was absolutely horrifying. Leaving your baby in the hospital is just the worst thing there is.”
A few days after her son was born, she underwent a PET scan, which meant she was unable to go near any of her children for eight hours. “I just remember sitting here in my bedroom and thinking, this is really unfair. It feels so brutal to be beaten up like that.”
She almost poisoned herself with toxic positivity, she laughs. “I figured everything will be fine and we’re so lucky in so many ways. But then there were certain things that would really get you.”
Her story isn’t a sob tale, however, Emma is quick to add. “I feel so lucky in so many ways. I am very aware that others are not so lucky.”
Emma’s parents moved into her house while she was being treated. “I never had to worry that Grace and Ruairi weren’t getting enough love or attention, they just sort of took care of all those things.”
She kept telling herself that everything would be fine in the end: “We had two children at home to take care of. Grace was such an impressive age. It was really important that I cried and then played a game or something. There were so many beautiful moments in our house. We had this new baby, he was just beautiful. The fear we had about Ruairi at first only made it worse – we were so lucky to have him here.”
Emma started chemotherapy a week after Ruairi got home. She describes missing much of her son’s first few months. A friend who had also been through cancer treatment gave Emma advice that she sticks to. “You have the rest of your life to be a good mom, now is the time to focus on yourself and get better.”
Emma was at times unable to look after her children. “There were times when my arms were just too weak or too sore to hold Ruairi. By the end of my maternity leave, when I was finishing my chemotherapy, I had lost all confidence in myself being Ruairi’s mother. With Grace, I knew everything about her. We had this six-month maternity leave together. I was constantly looking for validation from Tomas or my mother or my father.”
All of this compounded the guilt, which she explains is a big part of cancer. “It was one of the worst things, having to tell my parents; You feel like a burden,” says Emma, swelling. “My mom and dad sacrificed so much to move in with us. I felt guilty that I couldn’t spend time with Ruairi and Grace. Blame everyone else had to do things for me.”
Emma’s treatment ended in December and a few weeks of celebrations with friends and family followed. “I just sucked in every minute, it felt great,” she says.
In January it was more difficult. Emma faced the need for an administrative hassle to transition from maternity leave to sick leave. She also found getting out of the hospital system unsettling.
“I felt unattached and a bit lost. Is everything really okay? What if that comes back? I had spent so long saying I can’t wait to get back to normal. But in January I realized: “I don’t think there is a return to normal anymore”. We went through this really awful thing. Which in a way made us appreciate the little things in life,” she pauses and sighs. “But I definitely have fears. It’s a lot harder than I ever imagined to finish.”
“I don’t know if it’s me, or Irish, or women, but I find it very difficult not to be like, ‘Ah sure, I’m great'”
She struggled with the forms required to apply for sick leave. “I was no longer diagnosed with Hodgkin lymphoma, so I really had to explain each of my symptoms and how they prevented me from working.” She began to worry that she should go back to work. It was the feeling of having to prove yourself.
“You write fatigue on a form and then you’re like, ‘Sure, that doesn’t sound so bad.’ But the type of fatigue I experienced was not being able to walk up the stairs. Even filling out the forms – Chemo Brain is one thing. I had chemo brain plus baby brain. It was like looking at pages of gibberish,” smiles Emma. “I don’t know if it’s me, or Irish, or women, but I find it very difficult not to say, ‘Oh sure, I’m great.'”
Emma’s employer had an income support scheme in the works that allowed for some extra income. “We were so lucky that we had it because, to be perfectly honest, I would have had to go back to work sooner if we didn’t have that.”
For these reasons, Emma now wants to speak out as part of the Irish Cancer Society’s Leave Our Leave campaign, which is urging current legislation to be changed to allow women who are diagnosed with cancer to postpone their maternity leave while they are are receiving treatment.
Currently, unless a child is hospitalized, any person diagnosed with cancer or any other serious illness during pregnancy must use their maternity leave for treatment. Going back to work immediately after treatment, at the end of maternity leave, would have been physically impossible, Emma adds. “Physically, at the end of my treatment, I was worse than ever.”
She no longer saw her oncologist every other week, she had to pay her GP for sick leave. “Financially there is probably not a big difference between parental leave and sick leave. But mentally it feels like a huge difference. And in this situation, every cent counts.”
“There are certain things in society that put women at a disadvantage and we just accept that,” says Emma. “At the time, I just accepted that my maternity leave would come during my treatment. It never occurred to me that this is really unfair and shouldn’t be like this.”
“Sometimes it’s just so difficult to be a woman,” she adds. “You have to fight for everything”
If you or someone you know has questions or concerns about cancer, please contact the Irish Cancer Society Support Line on 1800 200 700 or visit cancer.ie
https://www.independent.ie/life/health-wellbeing/health-features/cancer-while-pregnant-i-was-looking-at-the-screen-at-my-20-week-scan-thinking-is-this-baby-even-going-to-become-a-reality-41880616.html Cancer During Pregnancy: “I looked at the screen at my 20 week scan and thought if this baby was even going to be a reality”