Ovarian Cancer Awareness Month: Sufferer urges woman not to die of politeness

This is Ovarian Cancer Awareness Month. Few people can possibly be more aware of it than Sue Robb, of Darlington. She talks about her own experience

Sue Robb, from Darlington, who has Ovarian Cancer
Sue Robb, from Darlington, who has Ovarian Cancer

In September 2011, I finished a long meeting at work and turned on my phone to a message from my husband, Graham.

I returned his call to hear “Oh darling, the hospital need to see you tomorrow”.

I’d had a scan the previous week after months of ill health but the last thing you want is the NHS springing into action. Never a good sign.

A week later, after more unpleasant tests and examinations, we were sitting in front of a gynaecologist who told us I had stage 3c ovarian cancer. I hoped there were 10, or 100, stages, but there are 4.

I asked for the likely outcome, expecting a lengthy time off work, so the air was sucked out of me when he said the average life expectancy is 2-3 years. I was 47.

I wasn’t unfamiliar with being told I have cancer, I had had a mastectomy for breast cancer in 1999, but had never had any further problems.

In November 2010 I had moved a filing cabinet at work, and a couple of weeks later, slipped on ice, and had pain in my shoulders and ribs that just wouldn’t settle.

I went to the nurse, the doctor, and had physiotherapy, but nothing helped. The strains were probably irrelevant, but made us all look in the wrong direction.

By February, I was having difficulty eating and feeling full quickly, had bowel problems, bloating and pelvic pain.

I had an ultrasound scan of my rib area which was normal. My GP told me I had chronic pain and might have to live with it.

I saw a private doctor in desperation who told me I had fibromyalgia. Over the next few months the pain continued and I was tired and ill.

My husband, friends and family urged me to go back to the GP, but I felt there was no point. I felt I was being fobbed off and was seen as a nuisance.

Eventually by August I could barely walk at times, had lost a lot of weight and had a huge lump in my lower stomach, so finally went back to a different GP - pleased ironically that I finally had a symptom which was obvious.

He referred me to the hospital and the next stage of my journey began.

Since then I have had chemotherapy and a major operation to remove my ovaries and various other things. I lost most of my bowel and now have an ileostomy.

An ileostomy is a small piece of bowel which the surgeon brings out of the abdomen near the tummy button and the waste is collected in an adhesive bag the person wears on their stomach.

I had a good year’s remission before the cancer recurred and I have just finished my second round of chemotherapy. I still have small tumours on my liver and spleen, but am having a new drug, Avastin, through the Cancer Drugs Fund, which is keeping them at bay for now.

I’m not angry any more, but I was very angry; with myself for not being persistent enough, and with my previous GP for not having a ‘lightbulb moment’ and thinking of ovarian cancer. If I had a message to GPs, it would be to please listen to your patients and take them seriously. Those vague symptoms may amount to something.

I retired from my job as Occupational Therapy Manager at James Cook Hospital in Middlesbrough. I miss my staff and my patients, but there are more important things than working.

I get tired and I have to balance my activities across the day and the week, but I generally feel OK. I do yoga when I feel well enough, I dabble in voluntary work, and I spend time with my fabulous family and friends.

I feel blessed and privileged in a lot of ways, because I have my wonderful family and friends, and I have this time, which a lot of people with cancer and life limiting illnesses don’t have, to say the things I want to say.

I have had to really look at my life and decide what is important, and am grateful to The Journal for helping me to raise awareness and achieve that goal.

I have seen both of my daughters graduate, my older daughter become a doctor and get married and my younger daughter settle in a fabulous job in London.

In July I’m 50, and at times I’ve thought I wouldn’t get there, so I’m having a party for my lovely friends and hoping to raise some money for Target Ovarian Cancer and the Ileostomy Association, both of which have helped me.

As one in 50 women develop OC, Target Ovarian Cancer have a challenge to tell 50 women about OC and raise at least £50, so my 50th birthday seemed the perfect opportunity to do this.

Then in September Graham and I will have been married for 30 years, another anniversary I thought I might not see. After that, I’ll need some new goals!

Seven thousand women in this country are diagnosed with OC each year, and the majority are diagnosed late, many at A&E. One in five are under 50. The survival rate at five years is 30%. It used to be called the silent killer, but there are symptoms; they are often vague, and OC charities work tirelessly to raise awareness of the symptoms to women and GPs.

There is a simple blood test, Ca125, which can be carried out. It doesn’t give a definite diagnosis because it can be raised for other reasons, but it gives enough information for further tests.

Lots of women suffer from OC. I don’t think I’m special, but if I can tell my story and help another woman, I’m happy to.

So, if you are sitting at home feeling unwell and worried, wondering whether to go to the doctor, I would say ‘Go’ and keep going until you get answers.

It may be nothing, but it may not. You’d do it for your children or your family, so do it for yourself. Don’t die of politeness.

Journalists

David Whetstone
Culture Editor
Graeme Whitfield
Business Editor
Mark Douglas
Newcastle United Editor
Stuart Rayner
Sports Writer