Gillian's ovarian cancer journey: diagnosis, treatment, and beyond

Gillian was repeatedly misdiagnosed for 18 months, but she kept persevering until she was finally diagnosed with ovarian cancer aged 33. 

"At 33, I was diagnosed with stage 3C low grade ovarian cancer. If I hadn’t pushed for the diagnosis, based on my research, I would’ve waited for routine surgery to remove ‘benign dermoid cysts’ which would have been pushed back by Covid-19. The disease would have undoubtedly progressed to stage 4 or beyond. Cancer doesn't discriminate by age; although very rare, it can and does affect people of all ages. 

18 months of struggle

It began when I noticed distinctive changes in my body. I was experiencing viral symptoms, urine infection symptoms, and bowel changes.  

I had already had IBS for years, but these were persistent changes that I knew were different for me. My GP organised a scan which detected a mass, but since my CA125 blood test came back normal, and my referral was changed from urgent to routine, it wasn’t long until I returned to my GP again to be treated for IBS.  

A few months later, I attended my routine referral at the hospital and was diagnosed with a dermoid cyst. I questioned the significance of my other symptoms, but was deemed anxious, and reassured I was young and there was nothing to worry about. My initial symptoms of feeling full early and nausea subsided a little, so I resigned to believing I had erratic IBS symptoms.  

Following this, for the best part of a year I had many appointments, but no reason to explain my symptoms that were now impacting my life significantly. I struggled trying to live with the increasing weakness, fatigue, and lack of social contact, due to my body’s demand for rest. Inside, I became increasingly distressed about the unexplained but life-altering symptoms. I had to spend most weekends resting to manage the week ahead and spent many weekend evenings trudging to out-of-hours clinics. 

Trust your instincts 

I read every article I could find and my on-going persistent symptoms were pointing towards ovarian cancer. But how would I convince medics of my concerns without looking like a hypochondriac? After a repeat CA125 showed slightly elevated results, my CT scan appeared 'normal.' At that point, very upset and weak, I pushed one more time for another opinion, before resigning to thinking I must be imagining it, and tried to convince myself it was normal.   

Finally in early March 2020, 18 months after noticing the changes in my body, after persistently raising that I now had every symptom of ovarian cancer, at my next appointment a grave consultant’s voice told me gently I had ovarian cancer. No matter how many times I’d predicted this conversation, nothing prepares you for hearing those words.  

This diagnosis was life-changing. The cancer had now spread and I would need extensive abdominal surgery to save my life, and this would also take my fertility. I was heartbroken.  

Fast forward three weeks, and after a very tense weekend where my surgery was almost cancelled due to Covid pressures on theatre spaces, I hugged my family goodbye, and went to the Glasgow hospital alone. My surgery was one of the last allowed that week, and was very successful.  

I began my recovery from surgery, with much help from my incredible, caring family and circle of brilliant friends. My family has been there every step of the way; I don't know where I'd be without them.

Living beyond ovarian cancer 

The side effects of my treatment were intense. I lost most of my hair from chemotherapy and I developed a blood clot, but I have been looked after by my kind, excellent oncologist, Dr Stanley. She's always calm and makes me feel very safe.  

My wonderful counsellor has been a God-send too, and wisely guided me through my journey, helping me process the trauma of the year. I was encouraged to write a poem to explore my feelings around loss of fertility.   

My brilliant consultant, Miss Ziyaie (portrayed below) is now helping me learn to live with the after-effects of my treatment. She has gone the extra mile to get to the bottom of each issue and has been there to talk to in all hours. In anxious times in hospital (without family or visits) I've been so grateful to have her there with me. 

Busting the myth that you go back to a normal life

As part of Gynae Cancer Awareness Month, Gillian wants to bust a myth that you go back to your old life after an ovarian diagnosis, and the idea we've heard in reference to Covid around 'the new normal'

"We don't see what lies ahead in our life. I never imagined having this crushing diagnosis just after my 33rd birthday and couldn't have imagined the devastating impact. This cancer took my fertility. The phrase heartbreaking doesn't describe the inner heartache I carry every day and every night of my life. I have needed so much invaluable counselling and support from my faith, wonderful family and circle of friends who have walked with me and enabled me to built my life back up. My nephews and nieces are so precious and building memories with them has been incredibly special.

Art therapy 

Creating art through my recovery has been a needed escapism. I’ve met many wonderful, compassionate NHS staff along the way, who I’ve created portraits of, as a thank you gift, for all their kindness. I began a series: ‘Portraits and Tales from a Hospital Bed’.

The new normal I want to see in the future

For medics and the public to recognise the symptoms so women can be diagnosed early, be offered the best treatments possible and have the best hope of surviving this crushing diagnosis."

If you or anyone you know is experiencing symptoms that are abnormal or unusual, head straight to your GP. Be as persistent with them as your symptoms are with you. You know your body better than anyone else.  

There is currently no screening tool for ovarian cancer but our researchers are trying to change that. To find out more click here.