Joyce

Joyce’s experience with cancer started over 20 years ago, around the time period of January 2002. Like many others faced with a diagnosis of ovarian cancer, Joyce initially had vague and intermittent symptoms. These symptoms included bloating, experiencing back pain and fatigue, having painful periods as well as a host of other things. As the symptoms got progressively worse, Joyce was determined to get to the root cause, despite up until that point only receiving a diagnosis of IBS.

After more thorough tests and investigations, endometriosis and fibroids were suspected as potential causes of Joyce’s symptoms, and in May of the same year, Joyce finally received a concrete diagnosis – she had fallopian tube adenocarcinoma, an extremely rare type of cancer. Joyce’s prognosis was unfortunately not good.

“It was just after Easter, I was recovering from a total abdominal hysterectomy which I’d had for endometriosis and suspected fibroids, when I received the news that I labelled in my diary as ‘the day my world collapsed’. Cancer had been found in my left fallopian tube, and the mass had burst and attached to my right ovary and lower bowel. In my diary I wrote, ‘I feel as though I’m in a daze and this is not happening’ - it was such a shock and so hard to take.”

Joyce was immediately thrown into an extremely tough situation, both emotionally and physically, highlighted further by the fact that she had to start chemotherapy just a few days later. At the time, ovarian and gynaecological cancers were far less understood, making things even harder for Joyce.

“My oncologist at the time said my type of cancer was ‘as rare as hens’ teeth’. The level of research just wasn’t at the level of today, so it was a totally isolating experience. I don’t remember exactly when, but it was sometime after my first diagnosis that I stumbled across Ovacome. They’ve been supporting me for 20 years really.”

Joyce went through her treatment, and one of the hardest parts of her ovarian cancer experience was the feeling of losing some of her identity, particularly the hair loss aspect of chemotherapy. At the time of her diagnosis, Joyce lived with her husband and two daughters.

“You know I was always known as Joyce with the big hair, it was part of my identity. To have that suddenly stripped away from me was really hard– it was so hard to process losing parts of yourself that you associated with your identity. I’d also had radical surgery that also contributed to this feeling of losing my femininity. Obviously, I was already blessed to have two wonderful daughters, and I didn’t plan to have any more children - but to lose the choice to have children again, to have that taken away from me, it was difficult”.

Joyce describes how her journey not only challenged her physically, but also mentally and emotionally.

“Since so much was taken away from me, I kind of felt like an empty shell, and I think it scarred me quite badly. Ultimately though, I had no choice, it was lose part of myself or die. I could have you know sat on the couch or laid in bed, but I thought no – I’ve got a husband, two daughters, I need to try to get through this. I’m still Joyce now, I’m just not the same Joyce as I was before this, but I always say the show goes on - that’s just who I am”.

Throughout Joyce’s journey she recalls how well she was supported by her family:

“I remember during chemotherapy treatment the hair loss was really getting to me, my youngest daughter Becky, she was 18 at the time, she just made me a cup of tea and piece of toast and sat me down and shaved my head for me – she could see how much it was distressing me. My older daughter Jess was organising appointments for me and taking me all over the place, and I remember she really took the lead on making sure I was eating nutritious meals. My girls were so mature considering everything that was happening and I’m so proud and thankful for them. I also want to say how amazing my husband Phil was too, who continued to work and support me the best he could. We went through every emotion known, and at times the tension was unbearable, but my family did so much for me – they were there for every step of the way.

Around the time of my diagnosis, Becky also did this incredible piece of ceramic art at college, titled ‘The Body’. It was this amazing, introspective and emotive piece of work that she’d used to channel all of her feelings around the cancer and our relationship – it was so special, and I just saw it as an act of pure love. To Becky this was her interpretation of processing my cancer, putting her emotions, fears and thoughts surrounding the cancer into something artistic and inspiring – I’ve always been so proud of that.”

Joyce recalls that after treatment, she decided to step away from working, with her husband Phil also stepping away from his job, as the pair looked to make the most of life by travelling and spending more time together.

“After all of the treatment and 2002 was out of the way, Phil and I took early retirement from our jobs and we decided to live life as best as we could, travelling and spending precious time together, including some fabulous holidays which we made lots of memories on!”

Following Joyce’s initial experience of cancer, she unfortunately faced a recurrence in 2012, alongside other health issues in her family, but despite this she has still tried to maintain a positive outlook on life.

“The recurrence of cancer in 2012, and being told it was an advanced cancer, took its toll on all of us. Without the enduring love and support of my family and extended family – my husband, daughters, sons in law, and granddaughters - I wouldn’t be here.

It’s been so essential having a close family and a special friend network around me, who are here, still supporting and caring for me. I also can’t forget the amazing surgeons, oncologists, doctors and nurses who saved my life! When I think about it, my daughters have lived half of their lives with me having this disease, which I think is a testament to how much cancer can affect all the lives of the people it impacts.

At the moment I’m fortunate that my cancer is essentially in hibernation - I call it my little dormouse! Presently I’m still being monitored on an annual basis. I have a CT scan and CA125 test, which gives me some peace of mind. I’ve been living with this for 23 years now and it really does change your perspective on life, but I just try to keep going - life’s for living no matter what, just try to get out there I say.”

Throughout the last 20 years, Joyce suspected there might be a genetic component to her diagnosis, which was also the opinion of the genetic team she visited – she lost her mother to ovarian cancer and her grandmother died due to peritoneal cancer. Over the years, Joyce has had several genetic tests. In 2003 she tested negative for the BRCA 1 and BRCA 2 genes, while in 2012 she was tested for Lynch syndrome – a negative result again. Finally in 2023, an R207 genetic panel identified that Joyce was in fact a BRIP 1 carrier, meaning Joyce has a mutation of this gene.

“I always felt I had to fight the good fight not only for me, but for my mother and grandmother who never had the chance of seeing or being a part in my two daughters’, and now three granddaughters’ lives. I thought - how sad was that! In the end I have been the lucky one to enjoy spending precious time with all of my girls and I couldn’t be more grateful of the time I get to share with them!

By having this genetic testing and seeing some of the amazing advancements in research, it’s reassuring to know that my family will have access to genetic monitoring and far more information in regard to this disease than was ever afforded to me, my mother and my grandmother.”

Throughout all of this time, Joyce has continued to engage with Ovacome, attending events at certain periods in her life, reading our magazine and leaning on our support services for information.

“I first attended an Ovacome event over 20 years ago, and to still be able to go to events and get information today is wonderful. I’ve really been struck by a desire to share my experiences, and at a recent Ovacome event I had people coming over to talk to me and even received a round of applause. I’ve never been applauded for anything in my life so to be supported by the Ovacome community like that is special.”

Having such a remarkable story and long history with Ovacome, we wanted to ask Joyce to describe what Ovacome meant to her after all these years.

“Ovacome has been such an important help - providing a mix of information and support in a personalised way. I see Ovacome as a lifeline, and you need as many lifelines as you can get.”

Joyce is now excited to feature in this year's Touch of Teal fashion show and continues to raise awareness of ovarian cancer and her story - we couldn’t be more inspired and thankful!