When Linda was diagnosed with peritoneal cancer in 2015, she was determined to carry on as normal. From travelling up and down the country giving speeches, to raising money for charity, Linda refused to let her diagnosis get in the way. To kick off Ovarian Cancer Awareness Month 2018, Linda talks about how she juggled treatment, and why she owes so much to the doctors and nurses who looked after her…
I look back at photos just before my diagnosis and I can see that my tummy was getting larger. I just made excuses – ‘I’m eating too much’, ‘I’m not getting enough exercise’, and so on. It never even occurred to me to think that I might have cancer.
I’d been having niggling pains in my right side for quite a while when I decided to see a doctor in September 2014. My doctor gave me a ‘non-urgent’ referral to the digestive diseases department and told me to come back if things got worse. By the time the appointment arrived a few months later, the pain had eased quite a bit, and I very nearly rang up the hospital and cancelled.
During the appointment, the consultant told me that he didn’t think the pain was anything to worry about, but that he was going to arrange for me to have a blood test and a CT scan to be sure.
After the scan I had an appointment with a different consultant. When he walked into the room he was followed by a lady he introduced as Francis, a Macmillan nurse. Immediately bells started ringing in my head. He quickly explained that he wasn’t 100 per cent sure I had cancer, but the combination of an enlarged omentum and calcifications would need further investigation.
Despite the shock, I was actually more concerned for my husband. I remember looking over at him and seeing his eyes well up with tears. We’d only been married for two and a half years and his previous wife had died from breast cancer.
I had a biopsy laparoscopy and had the date for my follow up appointment, but I received a text message giving me another appointment a few days later, with no explanation - I couldn’t understand this. I called the hospital and was told the Digestive Diseases Consultant would explain when he saw me. Later I learnt that my doctor had taken my file to a group meeting and there a gynaecologist had spotted that I had primary peritoneal cancer. Part of the problem with my diagnosis, I believe, is that I had a total hysterectomy in 1993 – and no longer have my ovaries! Primary peritoneal cancer is treated in the same way as ovarian cancer, but originates in the peritoneum, not the ovaries.
A ton of bricks
I underwent surgery and spent five days in hospital. I coped with the diagnosis and surgery, but chemotherapy and being told I would lose my hair was worse. It hit me like a ton of bricks. Within a week or so my hair was falling out. I don’t think I ever really came to terms with it – but I did begin to appreciate just being able to do my make-up and then pop the wig on. No more bad hair days!
The oncologist encouraged me to keep a diary and I found it really helped with my ‘bad days’. Oddly, I didn’t have any sickness. I just felt generally unwell – my legs were fidgety, I had no energy and my hands and feet were stiff. My fingers didn’t seem to want to work and even now I have problems opening some bottles and jars and I feel as if I am walking on planks of wood. Apparently, it is the nerve endings that have been damaged.
Sometimes, during the chemo sessions, trainee or junior doctors would visit the unit to see if we would talk to them about our experiences. I was very surprised that most patients said ‘no’. Personally, I was always happy to share my story with them. It’s how they learn.
Force of will
Just before my diagnosis, I’d been installed as National President of the Foresters Friendly Society. The role basically involved me travelling the UK, addressing meetings and after dinner speaking. There were some days when I felt so ill I had to physically force myself to roll out of bed onto the floor and slowly get to my feet. I don’t know how I did it – but I did. Sometimes I wonder if having to force myself to continue with my role helped me keep a positive attitude.
I remember chairing a conference and listening to a presentation about a lady who had been diagnosed with cancer and didn’t know how to tell her children she was going to lose her hair. I sat there, in my wig, facing over 100 people with tears running down my face. It made me realise how much I had bottled up. Although my family and friends were amazing and supported me all the way, sometimes you need someone outside your circle to listen and guide you.
A new normal
I had my last chemo and slowly – oh so slowly – I got back to normal. I still have traces of cancer around my bowel and liver. I take Letrozole tablets, oestrogen inhibiters, and I have regular CT scans. The drugs have various side effects – including hot flushes and fatigue – but if they keep the cells dormant, I’ll put up with that.
I’m lucky to be able to share my story with others – and some of that is thanks to the people who looked after me. The diagnosis – the surgery and the chemo – were all scary, but the consultants, gynae cancer nurse specialists and doctors were all amazing. They devoted themselves 100 per cent to my care. I cannot thank them enough.
Join Linda and spread the word about the symptoms of ovarian cancer this March. However you get involved, you'll be saving lives.