My faith has played a part — I always held on to hope

Twelve years ago, Patricia Waters was diagnosed with an aggressive tumour in her stomach. She cannot eat in the same way she once did and the aftermath of the ordeal lingers to this day, but she has found a ‘new normal’, she tells Liadán Hynes

‘It was a shock diagnosis, and it wasn’t what anyone was expecting to find. Even the medical team,” Patricia Waters says of her cancer diagnosis 12 years ago. “I was fit and healthy, working, training to be an Irish dance teacher, I was studying. I was living my life like everyone else. I ate healthy, I didn’t smoke, I exercised.”

Patricia, who lives in Sligo, had gone to her GP after experiencing a “sharp pain” in her breastbone when she was trying to eat. “And some pressure, as if you’re trying to burp, or get the pressure to move, but it wouldn’t go anywhere. And I was tired, but I put it down to everything I was doing.”

Lack of symptoms

She had no symptoms that suggested cancer, she continues; “I wasn’t losing weight, I didn’t look unwell.” An Oesophago Gastro Duodenoscopy (OGD) scope revealed a large, aggressive tumour in her stomach.

“I wasn’t long turned 33,” Patricia recalls. “Part of me thought, they’ve got this all wrong, I’m not sick; I don’t feel sick. I was nearly in denial; this makes no sense. But I suppose for me, I’ve always been someone who has a positive outlook on life. I have a good mindset, always smiling. I think that’s what stood to me. And my faith. I always held onto hope. Even though it was difficult at times. I thought, I’m going to fight this. I’m not ready to go. I have so much to live for yet.”

Patricia, who grew up in England until she was 17, describes how she realised that, while cancer brings uncertainty, fear, and a loss of control, she had control over how she dealt with the situation.

“I decided, ‘it can’t have my smile. It can’t have my positive outlook on life’. It is difficult to see that at times. But the human body’s resilience is amazing; how it and I adapted to life changing surgery and treatment. Your mind, your spirit, your faith, your hope, all of that does play a part. Even though it was torture, and I have suffered and endured more pain and trauma than I could ever have imagined, and I don’t know how I’ve survived at times…there were some funny times too, and laughter.”

Patricia underwent major surgery, a partial gastrectomy, which reduced her stomach to a third of its original size. “Complications set in, and I ended up in ICU on a ventilator. I was opened up from between my breastbone right down to the bottom of my belly button. And I was stapled all the way down there. I had a tube stitched to my nose and down into my stomach. A chest drain. Blood clot in my leg. My wound became infected. There were just complications.”

Twenty-five rounds of aggressive chemotherapy and radiation, all happening simultaneously, followed. “Nine out of 30 of my lymph nodes had been affected. I had to have aggressive rounds of treatment to give me a fighting chance. That was horrendous. It was touch and go a few times — a few times I nearly didn’t made it.”

Getting the necessary amount of nutrition throughout her treatment was challenging. “Trying to get food in, maintain my weight, and be strong enough to keep going with the treatment, it was really difficult. I was constantly getting sick. I remember looking to heaven going, ‘if you want me take me, just please end my suffering. I can’t take it anymore’. But they didn’t. That’s when your family, your friends, the medical team, they carry you. Until you’re able to muster up enough strength to get through the next stage. My willpower was strong.”

In the aftermath, she describes having to learn to eat and drink again.

Initially she was allowed “a drop of water. Gradually they increased how much I could drink. Then it was soup, jelly and ice-cream for breakfast lunch and dinner. And nutritional supplement drinks, Patirica says, laughingly grimacing, and adding that she eventually found a kind she liked.

“Because I had a little bit of stomach left, you can still have a bit of food, it wasn’t just going to be a complete liquid diet or soft diet.” As well as a total loss of appetite, she was suffering from mouth ulcers.

Patricia describes the surgery she underwent as “life changing”. “Complications, the long-term effects of radiation, the fatigue is like nothing you could ever imagine, it put me into early menopause,” she says. “But you adjust. It’s challenging every day to eat and drink — everything we take for granted. Like, I have to plan it, adjust, maintain. You can’t eat and drink at the same time. I have to drink first. You only have a small portion of stomach left, so you don’t have much capacity.”

All meals and snacks have to be planned in advance. She is on a low GI diet to deal with the Dumping Syndrome she has experienced due to her surgery. “There are certain things I can’t digest — beef, pork. Dairy makes me sick; I’m on a lactose-free diet. Fruit and veg can cause me pain and discomfort.”

On occasion she will still return to a liquid-only diet. Patricia has been unable to return to work since her surgery and treatment 12 years ago. “You’re grieving for that life you lost, before you got sick,” she explains. “You’re trying to find a new normal. I have one, and I have fought hard for it, and I will continue fighting for it, because I’m not ready to give it up yet.”

“Life can still continue, and I’m living proof of that. I didn’t do it alone,” she says, listing the family, friends, community, and medical teams who have helped her. “My parents. I remember looking at them one day and thinking, ‘it’s not just me that’s going through all of this’.”

“My faith has (played a part). Don’t get me wrong, I lost it at times. I couldn’t go to mass. But you get it back. I always held onto hope. And it was so difficult at times to see it, but I always held onto hope.”

Complications from the surgery and treatments mean she has good and bad days. “Trying to eat some days, it can be very difficult. And now I have SIBO (small intestinal bacterial overgrowth). I’m on long term antibiotics for that. Which makes eating ever more challenging again. I don’t absorb a lot of stuff. So I would get vitamin B injections, iron infusions, I’m on

‘You’re grieving for that life you lost before you got sick. You’re trying to find a new normal. I have one, and I have fought for it’

multi vitamins, calcium, nutritional supplement drinks. Sometimes I end up in hospital, rushed in by ambulance, where I can’t stop vomiting, I can’t keep food down, I’m in excruciating pain.”

Adapting and balancing

But she proudly points out how well she has done, given there was a time her survival was in question. “I wasn’t supposed to survive, everyone’s surprised at how well I’ve done.” Fitness was a huge part of her life before her cancer diagnosis, and she still makes sure she gets out for a walk every day.

“It is frustrating, because I’m still young, and you think, ‘why can’t I do this?’. You have to try and be kind to yourself and go, ‘look, it’s OK’. There are good days, there are bad days. It’s a balance. You’re constantly adapting, learning, trying to maintain it. But you can.”

She also finds focusing on artistic endeavours, baking, patchwork, sewing, making cards, helps. Patricia, who is now 45, also keeps a bucket list, “a wish list,” and each year she does something new, that she has never done before. It’s also the small things, she adds. “I still walk every day no matter how bad my day was. I meet up with family and friends. You try to live the life the best you can. I go to the cancer support centres, meet other people. I still keep a routine. It may not be the life I chose, but it’s the one I got. You do adapt.”

For more on stomach cancer, see cancer.ie.