My cancer journey started in February 2008 when my Mum was diagnosed with ovarian cancer. I am not embarrassed to admit that I was clueless about this type of cancer. I can remember my Mum walking down the drive saying, “I’m going to have to have some major surgery”, before she actually broke the news of her diagnosis to me, one of many ways I think she tried to protect us through the whole thing. The surgery was a full hysterectomy, followed by her first round of chemotherapy.
In a matter of weeks, we were thrust into this alien world of surgery, recovery, treatment, anti-sickness drugs and injections, chronic fatigue, and the inevitable hair loss. It was like living in a nightmare and it wasn’t even happening to me. My Mum struggled hugely with chemotherapy at first, not having known what to expect, how her body would react, but slowly she understood the pattern, the rise and fall of the side effects, the good days, and the bad days.
We then got nearly two clear years before the cancer returned, which we had all been warned about. Then followed more treatment, more sickness, but my Mum continued to respond well to treatment. Ovarian cancer can be managed like a chronic illness we were told, and this was absolutely the case for the first three or four years. However, the gaps between treatment were shrinking, the cancer coming back sooner, and the options running out. My Mum had two long stints in Southampton General Hospital, coming out determined after the first, building her strength back up at home and enjoying her family and friends, including helping me organise my wedding and watching me walk down the aisle towards the end of 2012. Three days after my wedding she had her next course of chemo, she had paused it for a month to ensure she felt well for my wedding – that’s the woman and mother she was.
But by Autumn 2013 she was going downhill, she once again spent time in hospital before being moved to a hospice before Christmas. She spent Christmas Day at home with us, even managing to complain about some of the presents she received, eating quite a few roast potatoes, and giving our family some precious and unforgettable memories.
My Mum died in the middle of January 2014, at the age of 64, five years after diagnosis.
It’s very hard to articulate the impact her death had on us. I remember feeling the unravelling of a knot of pure anxiety and worry, knowing she wasn’t suffering anymore. That was quickly replaced by overwhelming sadness. My brother and I had lost our Mum far too prematurely. My Dad had lost his wife of more than 35 years. I still feel the hole of grief to this day, but to me, grief is unspent love, so I embrace it and hold it close as a way to hold my Mum close.
My life has unquestionably moved forward since then, but I have not, and never will, move on. I don’t know how to, and I don’t want to. I have recently created @EatSleepGrieveRepeat, an Instagram account where I am sharing my experience in life since losing my Mum. My brother summed it up simply as; “it helps you, it could help others, and it’s your way of living without Mummy”. Writing is like therapy for me, seeing my thoughts tumble out onto a page is a release of all those emotions inside of me, and feels incredibly cathartic. I feel heard, seen, and I’m creating a space for others to feel the same.
Before my Mum died, they tested her for the BRCA gene alteration and found that she was a BRCA 2 alteration carrier – causing an increased predisposition to breast and ovarian cancer. My Mum was of Ashkenazi (eastern European) Jewish heritage, and sadly the prevalence of BRCA alterations is higher in this population. When my Mum was 41, she had been told she had pre-cancerous cells in her left breast, they said they could cure her by operating and she didn’t hesitate. She had a single mastectomy and subsequent regular screening, and never actually had a breast cancer diagnosis. What they didn’t know, as well as they do now, is the connection with ovarian cancer for women who have breast cancer. As such, the ovarian cancer, when it presented itself in 2008, was advanced and incurable.
Knowing this, in 2015 I was also tested and told I am also a BRCA 2 alteration carrier, giving me an 80% lifetime risk of breast cancer, and 20% lifetime risk of ovarian cancer. From the age of 30 I have had an annual MRI breast scan to detect any early signs of breast cancer, and I have also had many conversations about my options for risk reducing surgery. I am now, in fact, on the waiting list for a double mastectomy. I am also aware of my options related to reducing the risk of ovarian cancer.
I am beyond grateful to live my life with this knowledge, at the age that I am, and I only wish this had been the case for my Mum all those years ago. Knowledge is power, and it’s this sentiment that I think of when trying to reconcile the cards our family have been dealt. When I first found out I was a BRCA 2 alteration carrier, I spoke with a wonderful consultant who told me to have my family first and then think about my risk reducing options. I have duly done that, had two beautiful girls, and am now focused on what I need to do to ensure I am around as their Mum for as long as possible. When I really think about surgery, and play it forward in my mind, I can’t deny it scares me, but not as much as the thought of being in the dark about this or taking no action.
They call ovarian cancer the silent killer as it largely has no symptoms early on and can often be misdiagnosed. For those who suspect they might be high-risk, if there is a family history of breast or ovarian cancer, if you have a relative who is a BRCA 1 or 2 alteration carrier, then I can only encourage you, gently and with your best interests in mind, to ask your doctor about getting tested. Equip yourself with knowledge early, and fundamentally, choices. I write this for my daughters, my husband, my dad, my brother, and of course, my beautiful, magical Mummy.
We have more information on BRCA gene alterations and genetic testing on this link.
Our Ask Eve nurse service is here to help with any advice or information on being diagnosed with cancer, inherited risks and genetic testing. You can get in touch for free on nurse@eveappeal.org.uk or 0808 802 0019.