I made a decision in the beginning, that I would take charge of my own story. I am much more than this diagnosis and cancer will not define me, so I’m taking back the power.
More than a diagnosis
It was September 2022 that Heulwen started experiencing regular indigestion, reflux with occasional hiccups around mealtimes. She found that she was having to eat a little bit slower to relieve the symptoms. With a background in nursing, she believed the symptoms were similar to that of her husband’s, who has a hiatus hernia. They had not long returned from Venice to celebrate their silver wedding anniversary and were about to leave for a trip to Paris, so Heulwen used a strip of her husband’s Lansoprazole medication to help relieve her symptoms.
It definitely helped, though as soon as we returned from holiday I booked an appointment with my GP and said that I thought it was hiatus hernia. I asked if I could also be prescribed Lansoprazole.
Heulwen, who has a background in nursing, explained that her GP thought the hiatus hernia to be likely, however he wanted to refer her for further tests, such as a barium swallow and an endoscopy, just to make sure there was nothing more going on.
“There was such a lot going on around this time at home, we’d just celebrated our silver wedding anniversary. My step-son and wife were expecting their first baby (our first grandchild) in the November and we were all so excited. Both our children had left home - our son had recently graduated from Bath University and had just started his first job and our daughter was going into her final year at Warwick University.”
As well as the family celebrations and milestones, Heulwen was beginning to reduce her hours in a busy job that she loved, as a specialist paediatric dermatology nurse. Using her skills and dedication over the years to build a valuable service based at St Woolos Hospital in Newport. But now was the time for her and husband, Rob, to start looking towards an early retirement.
She was also caring more for elderly parents who lived an hour away, both unwell at this time, with her mother having to spend time in intensive care. Heulwen had to reschedule her endoscopy appointment by a few days as she found herself having to take time away from work while she drove between east Cardiff and Porthcawl to stay over and support them.
The endoscopy took place and although she had every faith in the medical team performing the procedure, the nurse in her needed to be aware of each stage and monitor in the process.
“It’s a known fact that no one likes nursing a nurse” said Heulwen, “as we like to see everything that goes on. So when it came to having the endoscopy, I wanted to be aware of what was happening on the screen. It was there I saw a big lump and realising that this didn’t look right. I asked the consultant, at the end of the endoscopy, if they could see what the problem was. He said yes, there was a tumour there and he thought it was cancerous.”
In November 2022, Heulwen was diagnosed with oesophageal cancer, along with a hiatus hernia which she already knew she had.
It didn’t cross my mind that it was oesophageal cancer. I wasn’t feeling unwell, I had loads of energy, hadn’t lost weight nor was I feeling tired. In fact, there were no worrying symptoms at all. The diagnosis came as a shock to me as I didn’t fit the typical criteria associated with this kind of cancer – statistically higher in men, a heavy smoker or heavy drinker – none of these applied to me.
After receiving this news, her mind went into overdrive with all the events happening around her. It was their son’s birthday and he’d come back home to climb Pen y Fan with friends over the weekend. And they’d only just dropped their daughter back to university.
She also began to feel horrified, that this diagnosis would take away the sheer excitement the whole family was feeling around the new baby arriving in November.
It was then that Heulwen went into practical mode. She and Rob first told their son, so he cancelled his birthday plans and said he would help out with his grandparents, while Rob drove a five-hour round trip to collect their daughter, who’d not yet unpacked her bags.
Heulwen and her son drove to Porthcawl to care for her dad, her mum still being in hospital.
I knew I’d have to break the news gently to them, that something had been found. I didn’t use the word ‘cancer’ because of all things, I had a brother who’d died of cancer when we were teenagers. I wanted to protect them as much as possible, as I had this awful thought that I could not let my parents bury their other child.
After further scans and investigations, it was discovered that the cancer had spread to a lymph node. So Heulwen’s oncologist and surgeon decided between them - a combination of chemotherapy and radiotherapy treatment, to be followed by surgery. Once a treatment plan had been discussed, she began to feel hopeful and it was in December when Heulwen met her surgeon, Miss Witherspoon.
I asked her if she could save my life and she said yes. That was all I needed to know.
From Prehab to Rehab
Heulwen was offered a place on a programme called Pre-abilitation (prehab to rehab) which would help her to get as fit as possible before surgery. This was not only physically but also to psychologically prepare and accept what was going to be ahead of her. Things she’d previously taken for granted, like dietary advice and relearning what she could and could not eat after the surgery.
It was during these prehab sessions that Heulwen struck up a friendship with two men in her physiotherapy group, who were walking a similar path to herself and both were having the same surgery before hers.
This was a hugely important to me, as we were able to support each other throughout, because you are thrown into this world where you don’t know what’s normal or not. So to be able to pick up the phone to Jason or Pete after my own surgery and talk through any niggles, made it feel more normal.”
We’re all still in touch, along with another lady from the group who desperately wanted to grow her family at the time and wasn’t sure if she’d be able to after her treatment. Fast forward a few years and I’m privileged to say that I was recently invited to this much-wanted second child’s 1st birthday party and christening!
In January 2023, Heulwen began chemotherapy and radiotherapy combined for five weeks. Then in April, she underwent one of the biggest planned operations that takes place in the Heath Hospital, Cardiff. The surgery is estimated around eight hours. Heulwen’s went on for 12 hours.
It was a very long day for my husband and family” recalls Heulwen. “After I came to from the surgery, I literally counted 12 tubes attached to me, and the very next day my surgeon came to see me, she insisted that I was moved to be seated upright in a chair. This felt like an impossible mission, but I trusted her implicitly.
I still find it incredible that a complete stranger to me, was willing to use her phenomenal skills to save my life, she was fully invested in my recovery – who was I to argue?” My oncologist and surgeon are two amazing women, I’m forever grateful.
The nurse behind the diagnosis
One of the hardest things for Heulwen was having to walk away from her career, never being able to resume the job she loved and continue to be part of a service that she built up, even though she’s left this part of her life in very capable hands.
It took me a long time before I finally cancelled my registration with the Nursing and Midwifery Council. I chose to do this on my terms, and those terms were to be on the anniversary of my surgery. It’s almost like a celebration of two years since the operation.
It feels like I’m taking more of the power away from cancer as well, my way.
A big part of Heulwen’s job and a part she also misses was teaching.
“The ‘hospital talk’ is a language I speak. So I was asked by the nurses that cared for me throughout my treatment and surgery, if I’d be willing to talk at a small Study Day they were arranging for ward nurses. They wanted me to talk about the operation I had from the patient’s point of view, so I prepared a presentation and the talk went well.
A few months later, I was invited to give this same talk at the All-Wales Upper GI Cancer Study Day. To my absolute honour, sat at the table in front of me was my oncologist. It was such a privilege to be able to share my story and hopefully get over that behind every diagnosis there is a person, along with their family and their friends.”
Heulwen feels that being open about her cancer journey, not only with her former medical colleagues and patients at the time, but with her friends and community has hugely helped, as it meant that she has been able to tap into a wider support network.
What now?
When the physical treatment ends you are suddenly in a different world and you have to take the time to know the ‘new you.’ Your experience changes you, it changes your outlook and your perspective – I am a very different person to that I was before and find that I have little tolerance for the little dramas in life. I tried to pick up the pieces and found that they no longer fit in the same way.
“My body has been through such a lot, that it has taken my mind a while to catch up.
Heulwen talks about how incredibly grateful she is and how in awe of the skills of the medical professionals who literally saved her life. She also explains how the treatment has left her with a number of other conditions. As a consequence of the treatment and medication, combined with a four-stone weight loss, Heulwen has a few crushed vertebrae and a new diagnosis of osteoporosis. It means she can’t walk like she used to. As well as her energy is lower and she no longer eat meals like everyone else.
Because of the surgery, I can only eat tiny toddler-sized portions. Coming to terms, psychologically with all of this is big and it took a while to get my head around it. Nowadays Rob and I will often share a main meal when we dine out.
Cancer might have controlled my body but it wasn’t going to control my mind.
After her diagnosis, Heulwen sees things differently to before. She shares how anxious she’s been lately, due to a number of recent investigations to ensure that the cancer has not returned – thankfully it hasn’t.
I see things differently these days, as I self-diagnose cancer again and again. For example, I don’t just have a headache, I self-diagnose a brain tumour. The medical team continue to be amazingly supportive.
As Heulwen looks to the future, she says there’s an emphasis needed around emotional support and rehabilitation for people to help enable them to become their ‘new you.’
She talks about how vital charities such as Tenovus Cancer Care are, in helping to pick up this kind of emotional and practice support in the future, as more people will be needing this kind of support. Advances in physical treatments will be inevitable and it’s vital that this type of practical and psychological service is provided alongside and after physical treatment to help them adjust to a new way of living.
When you get a diagnosis of cancer, you step out of your world and into a parallel world and you have to learn to adjust. The surgery and treatment was massive and I’m forever grateful to those incredible people who saved my life.
I’m a better person and I now want to use my story to share patient experiences with medical professionals and I want to be able to help empower those who find themselves on a similar journey to mine.
Of course it’s changed me – I’m a little bit more feisty than before but still me!
