Alison is telling her story to raise awareness of ovarian cancer. You can get involved too - join us this March for Ovarian Cancer Awareness Month and Start Making Noise to raise money and awareness to improve the lives of women with ovarian cancer.
When Alison was told that her cancer had returned she was devastated. Now she talks about the fear and depression surrounding her recurrence, and why she wants others to know there is light at the end of the tunnel...
It’s now been over three years since my last visit to the operating theatre.
During a routine visit to my GP, I asked the doctor to check my tummy as it seemed bloated. I’d just returned from a 50th birthday trip to Dubai, and I wasn’t sure if it was just normal weight gain after a holiday. The doctor advised me to go straight to A&E to get it checked out as she thought she could feel ‘something’ in my stomach. Before going to the hospital I called in to the local chemist for a pregnancy test kit.
A physical examination followed by an ultrasound scan showed a large cyst on the ovary.
Blood samples were taken and the doctor arranged a CT scan to rule out anything more sinister.
A week later I was called back to the hospital where the doctor did an internal examination followed by another ultrasound scan. Afterwards, my husband and I were brought into a room and told that I had ovarian cancer. This came as an enormous shock as cancer hadn’t crossed my mind. The doctor also confirmed that the CT scan showed that the cancer was in an early stage and had not spread to any other organs.
Six weeks later I was in surgery. I had my ovaries, womb, appendix and some lymph nodes removed. Although encapsulated, the cyst (by now the size of a melon) had ruptured during removal.
After the surgery, the oncologist decided that no further treatment was required, and I would be called back for a check-up in six months. I was also informed that the type of cancer I had (adenosarcoma) was one that usually affected the uterus. At that time, only 16 cases of if being found in the ovary were known worldwide.
During the six month check-up, a CT scan showed a new cyst and a follow up MRI confirmed that this cyst was getting bigger. The cancer had returned.
Surgeons performed a diagnostic laparoscopy and confirmed that the cyst was the size of a tennis ball and growing. I was totally devastated. I’d naïvely thought that once the ovaries were gone the cancer would be gone as well.
A week before my surgery I was sitting at home when I had a warm feeling and looked down to find myself in a pool of blood. The tumour had ruptured and I was rushed to the hospital. This was probably the toughest part of the journey. The smell of the leaking fluid was unbearable and lasted for several months.
Coping with the fear
I arrived at Belfast City Hospital in preparation for my second operation, only to be told by the surgeon that the tumour was growing rapidly and was now too large for the operation. He advised me that he was going to put a stent in my kidney and that I was to report to the oncologist the following week to organise chemotherapy to try and shrink the tumour. The chemotherapy was a success and a few months later, surgeons performed a 10-hour operation to remove my bladder, parts of my bowel and vagina. I was also fitted with a permanent urostomy and temporary ileostomy bag.
After the operation, I spent four days in the intensive care unit where I was put on a ventilator as I was having trouble breathing by myself. I also later developed sepsis and had to be rushed back to hospital. During this period, I struggled to stay awake and when I did I was often completely disorientated. I became very depressed and frightened, and the doctors seemed to be very concerned.
Fortunately, after two weeks my condition improved enough to allow me to go home, and a three week holiday in the sunshine proved to be the tonic I needed to get my life back on track.
Ten months later I was back on the operating table as the bowel surgeon successfully reversed the ileostomy.
I am telling my story now in the hope that it will help promote awareness and encourage women who may have concerns to consult their doctor straight away - no matter how trivial it may seem.
My niece sadly lost her life to ovarian cancer at the age of 34, having been wrongly diagnosed for almost seven months. It’s so important for people to know the symptoms.
I also want to help others see that there is light at the end of the tunnel. The hair that I dreaded losing so much has now come back as thick as ever; the urostomy bag that was my worst fear I now look at as my friend; my bowel is operating normally and my outlook in life is much more positive. These days I try to enjoy life to the full.
I went to a Being Together day organised by Target Ovarian Cancer last year during Ovarian Cancer Awareness Month, and it introduced me to a lot of new friends who regularly meet up for lunch, share stories, have a few laughs and come up with crazy ideas like getting tattoos together, which we did back in November.
Finally, I would like to thank all the staff at the Belfast City Hospital cancer centre for their professional and caring expertise. Without them I would not be telling this story.