Elaine's Story
Elaine is bravely sharing her story of Ovarian Cancer with the Lady Garden Foundation for OCAM!
‘If telling my story means that just one woman is diagnosed early leading to a better prognosis, a better chance, then it is a story worth sharing.’
I’m struggling to know where to start with the telling of this tale ........I don’t like talking about the big c - small case deliberate, it already gets enough attention! However, I have a strong urge to share my experience with other women because the symptoms of the type of ovarian cancer I had, can be so easily attributed to more common, every day causes. Unfortunately, this means women are being diagnosed too late, or at least late enough that chemotherapy is unavoidable. If telling my story means that just one woman is diagnosed early leading to a better prognosis, a better chance, then it is a story worth sharing.
If telling my story means that just one woman is diagnosed early leading to a better prognosis, a better chance, then it is a story worth sharing.
So, what were my symptoms? Well to begin with vaginal discharge - two words that don’t crop up at too many coffee mornings! - nothing too bad, but enough to warrant the use of panty liners daily. I flagged this to my doctor who put it down to menopause and told me not to worry. Then there was the intermittent lower back pain and pain in my right side. To be fair, that earned me a referral to the gynae team who arranged an internal scan of my uterus. This revealed a polyp – a bump shaped cluster of cells - that they wanted to remove but then lockdown hit and the procedure got postponed. When discussing my results, the consultant casually mentioned that my right ovary was ‘shrivelled’ (yes that’s a thing apparently – thank you menopause!) which was likely the source of the pain in my side.
Over the following eight months, the back pain became more frequent as did the bouts of tiredness. Out of the blue, I would have maybe 3 or 4 days in a row where by the afternoon I felt so completely exhausted that sometimes I’d look at the cold, hard, tiled kitchen floor and fantasise about lying down and falling into a deep sleep. At 51 I was fit and healthy. Being a vegetarian, I ate well, practiced yoga and took my dog for daily walks. I couldn’t understand why I felt so tired and started to worry that I might have ME. Another trip to the doctor resulted in a chat about stress. My children had both had significant health issues that year and I ran my own business so that seemed like as good an explanation as any for my tiredness.
In the end, a routine scan of my kidneys (an annual event given the high prevalence of renal cancer in my mother’s family) revealed an inexplicable mass and with it the possibility of another more sinister explanation for my symptoms. My doctor reassured me that more scans and tests would need to be done and for now, I shouldn’t worry. But that was easier said than done. Following an MRI and a CT scan I was referred back to the gynae team. The consultant wouldn’t be drawn on what the mass was, but recommended it be removed which seemed a sensible option. She also recommended a radical hysterectomy given my age and the fact I also had a prolapsed uterus, which up to that point I had thought was the reason for my increasingly frequent need to pee. My suspicions were slightly raised when the consultant said she wanted to do the op as soon as possible (just four weeks later I was on my way to the operating theatre!) but she hadn’t given me any real reason to be worried, so I relaxed and focused on getting ready for Christmas.
‘You are so lucky,’ those were the very first words that the oncologist spoke to me at the beginning of February 2021. ‘It’s very unusual for ovarian cancer to be caught at Stage 2.’ At that moment I felt anything but lucky. I’d had a phone call one week before from the consultant who did the hysterectomy to tell me that biopsy results showed that the long thin mass she’d removed together with my uterus and ovaries three weeks before, was a Stage 2 High Grade Serous tumour.
Apparently, the tumour which was in one of my fallopian tubes, had all been removed but the oncologist explained that there was no guarantee that every teeny tiny trace of cancer had been excavated from my body and there wasn’t any type of scan that could confirm that was the case. Preventative chemotherapy - I hadn’t known there was such a thing – was her recommended course of action, so that if there were any minuscule traces of cancer left they could be obliterated. Ultimately the choice, such as it was, was mine to make. No one was forcing me to have chemotherapy.
I remember my husband and I looking at each other, faces pale and anxious, a torrent of unspoken ‘what ifs’ shooting between us in a matter of seconds. What if I opted for the chemo, but the cancer was actually all gone? Chemotherapy is toxic and it could do all sorts of damage to my body. But what if I didn’t take the chemo and the cancer came back, how would we live with having made the wrong decision? How could I face my boys? And could I ever really relax about my health again if I didn’t take the chemo? Of course, now I know the reality. You never really relax again about your health once you’ve had the big c, but to be honest being vigilant is necessary to stay healthy. Even with my husband holding my hand and talking through the pros and cons, I don’t think I’ve ever felt so alone. Of course whatever decision I made would have an impact on him, but ultimately it was my body that would bear the ramifications.
In the end, I couldn’t take the risk and so opted to have chemo. Walking into the hospital for my first session, I was a wreck. I’d read about the side effects of chemo and had to fight the impulse to turn and run out of the building (well a quick walk in truth given I was still recovering from the hysterectomoy) never to return. From then on, I decided to do everything I could to take back control. I circled all planned treatment dates on a calendar, relishing the process of crossing off the days in between, visible evidence that I was moving closer to it all being over. I highlighted in pink the weeks on either side of treatments where life would be a little easier and I would have more energy. Some things you can’t control though, like losing your hair. Once it started to shed, my husband shaved it all off for me. It was an emotional rather than a romantic moment watching my dark, curly hair fall to the floor. But, in the end it was just another thing to learn to live with, after all there was no point in stressing about it, having no hair, eyebrows or eyelashes wasn’t a big deal whereas reclaiming my health and potential for a long life was.
‘There’s no way round it only through it’ became my motto during the five months of chemo and somehow, I did get through it. Everyone has their own way of coping with a cancer diagnosis, mine was to keep on working and tell only a select group of friends and family what was going on. I didn’t want to be pitied and I certainly didn’t want people saying my name and the c word in the same breath. I’ve spent my whole life hearing about people who’d got a diagnosis and thinking of it as the beginning of their end and I didn’t want people to think that about me.
There are more people I wish I’d told at the time, because the diagnosis and treatment are part of my life story now and it seems odd that not all my friends and family know about it. But in some ways that’s quite liberating, like keeping in touch with the old me. That suggests that there is a new me, and there is. She’s fit and healthy and long may that last. She’s also a little neurotic about any new aches and pains but I’ve accepted that that’s how it’s going to be from now on in.
Having a brush with cancer sets you apart a little from the other people in your life. For the longest time I felt like all my friends and family were on an island and I’d been cast adrift and would never be back on shore with them again. But you know what, I’m back on the mainland and I’m loving every minute of it! And that is the other reason for sharing my story, I want other women to know not to fear an ovarian cancer diagnosis, it doesn’t have to mean the beginning of your end. Medicine has made great strides in the last few years and if you take your symptoms seriously and get diagnosed as early as possible, there’s every chance you can still have a happy ever after. I have.