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Non-Hodgkin’s lymphoma: I could go months without thinking about it and sometimes it’s all I can think of

Daffodil Day: Being diagnosed with non-Hodgkin’s lymphoma has ‘really shaped my life’, says gym owner Sarah O’Neill

At just 17 years of age, Sarah O’Neill experienced chest pains which doctors initially thought were due to over-exertion in the gym. It turned out to be cancer.

“I was always quite active and went to the gym a lot, so when I started getting chest pains in early 2014, I went to my GP,” she says. “It felt like my heart was pumping out of my chest and would be very uncomfortable. I could have it for a week or just a day and then it would go, but even though I saw my GP about it three or four times, they thought it was down to me injuring myself in the gym or pulling a muscle.

“Looking back, I should have pushed them further and gone to the hospital myself, but no one expects someone so young to have something so serious. So the pain got progressively worse over the months and went from my chest to my shoulder and into my neck. My mam asked me a couple of times if I wanted to go to hospital, but I said it was fine. I think I knew in the back of my mind that something was really wrong, but I didn’t want to face the reality.

“Then, one night, I was lying in bed and couldn’t breathe. The pain was really bad and I realised that I needed to get it checked out in hospital. As it was the middle of the night, I sent my mam a text to say we should go to A&E the next day, but she came into me and told me to get up that we were going straight away. I tried to make her wait until the next day, but she insisted we go then.”

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The now 26 year old from Meath waited for more than 10 hours in casualty and during that time, the crippling pain began to recede. She tried to persuade her mother to take her home, but, thankfully, she refused as when she was finally examined and X-rayed, a growth in her chest was discovered and she was transferred immediately to the Mater hospital in Dublin.

Apparently I had a tumour the size of a small watermelon and I’m only 5ft and about 50kg

“The doctors thought initially that I might have a benign tumour, but after admitting me and doing a biopsy, a couple of days later the results came back to say that I had non-Hodgkin’s lymphoma,” she says. “I apparently had a tumour the size of a small watermelon and I’m only 5ft and about 50kg [7st 12lb] but there were no signs on my body that there was something so big inside me.

“My mam, dad and nanny were with me when they told me I had lymphoma. I asked them what it was and they told me it was a cancer of the immune system which was quite far on [advanced] so they would need to get the ball rolling with treatment straight away.”

Non-Hodgkin’s lymphoma is a cancer that begins in the lymphatic system (part of the body’s germ-fighting immune system). White blood cells (lymphocytes) grow abnormally and can form tumours throughout the body.

“My mam started freaking out and I told her that she would have to leave the room. I told them all that I was able to deal with it but I just needed them to relax. I don’t think I was really that shocked as I had been trying to ignore the pain and how unwell I was feeling, so although it was obviously a shock, I was glad to finally know what was wrong with me and that it wasn’t just something which was in my head.”

Because of the nature of her cancer, Sarah began treatment just two days after she was diagnosed. She was told that she would need six months of chemotherapy followed by either surgery or radiation, or perhaps both. She opted for surgery in order to have “peace of mind that the cancer was all gone” and after chemotherapy finished, she underwent surgery.

Then, when the removed cells were tested, it was discovered that there were still traces of lymphoma present, so she also embarked on a course of radiotherapy – but not before she finished her final school exams. “I had surgery in April 2015 and although I wasn’t in school for the year, I took the Leaving Cert in June,” she says. “It was suggested that I take a year out, but I wanted to get it over and done with and it was also a bit of normality for me.

“I started the radiation after that and I think I coped with it quite well because it all happened so fast that I didn’t have much of a chance to think about anything. Also, with regard to the treatment, I think that because I was so active and healthy beforehand, that really stood to me as the chemo wasn’t as bad as I expected.

“I had a phobia about getting sick and thankfully I didn’t, but I did have really bad joint and bone pain, sometimes I would be crippled with it. I also had hot flushes and found it difficult to sleep – these are some of the side effects that no one really talks about.

“Throughout it all, my family and extended family were so supportive. Everyone was always coming to the hospital to see me or bringing me whatever food I wanted, my nanny came down to mind my two younger brothers [Luke and Sam] and my mam, who shaved her head when I did mine, stayed with me every single night at the hospital. Even when they were trying to kick her out, she said she wasn’t going anywhere.

“The Daffodil Centre in the hospital was also a huge help with information on nutrition, exercise, counselling and how to cope. I would often just go down there to talk to them. And they gave me lots of leaflets with information which was very helpful.”

Sarah, who now, together with her partner, owns her own gym, says her life has been transformed since having cancer. She works as personal trainer and feels in the full of her health physically. Despite finding the mental and emotional side of things difficult to deal with in the beginning, she feels it is very important to be open about cancer and talk about it as much as possible.

As one in two people will get it in their lifetime, we need to be open about it and not feel shame or try not to talk about it

“Cancer has really shaped my life,” she says. “Sometimes, I could go months without thinking about it and other times, it’s the only thing I can think of as I look back at what I went through and wonder what it might mean for the future. Obviously, I have my bad days, but overall, it has made me so grateful and I try to take every day as it comes, to live my best life, and look after myself while also doing what I want to do with my life. I feel I have a good balance.

“I’m very open about having cancer as I would like to help try to normalise it. Of course, it’s not a positive thing, but as one in two people will get it in their lifetime, we need to be open about it and not feel shame or try not to talk about it. There are so many good and positive stories about cancer and I think that having a good attitude makes a huge difference to it – and everything in life.

“I like to share my story because it is a good one. Everyone has difficult things going on in their lives and this was just one of the things I had to go through and it has made me who I am today. I would advise anyone else who has just been diagnosed to know that there are so many good days and that it’s not the end of the world – attitude and mindset have a huge amount to play.

I would also tell them to get in touch with the Irish Cancer Society who do so much for people with cancer and offer so many services – even those who haven’t been diagnosed will be affected by it in some way. So I would encourage everyone to support Daffodil Day and help them to continue their great work.”

The Irish Cancer Society’s Daffodil Day, ‘the day we take back from cancer’, takes place on March 24th. To get involved or to make a donation, visit cancer.ie/daffodilday

Arlene Harris

Arlene Harris

Arlene Harris is a contributor to The Irish Times specialising in health, lifestyle, parenting, travel and human interest stories