News & stories Personal stories The Trio - a family living with ovarian cancer We were a trio - three sisters raised in a loving, suburban North West London home. Jackie, a journalist, flew the nest in the late 70s to live abroad. Me, a social worker, three years younger, didn't stray far from home and with my husband Jeff, raised two daughters. Then there was Joanna, our Jo-Jo, the youngest by a further seven years. Beautiful, quirky Jo who grew up to be a feisty activist, adored animals and came out in her early 20s, to the initial bewilderment but loving acceptance of our parents. After a relationship ended in 1996 she upped sticks to live in New York for the next 10 years. Jo qualified as a psychologist working amongst the LGBT+ community, but after witnessing 9/11 first-hand, she became involved in disaster support. She applied for a Green Card, but was constantly rejected, despite glowing testimonials and even being referred to in the press as ‘an Angel of 9/11’. In 2006 she came back to London to see family and friends. Two weeks after returning, her fifth attempt for her Green Card came through; but she was so annoyed she decided to stay put. For us, and particularly our elderly parents, it was wonderful to have her back. Rarely a smoker, but appreciating a glass of wine or two, Jo was a picture of health, regularly biking and swimming and she had a wide circle of friends. She would go for regular mammograms, but as a gay woman, thought any other gynaecological check-ups just weren’t necessary. Looking back, she admitted she had experienced stomach pains on and off for a couple of years. ‘Just muscle cramps and no further exploration needed’ decreed her GP. When further symptoms with a discharge started up in early 2011, she requested a referral. I went with her to the consultation and she was incredibly anxious. ‘If it’s cancer, I am off to Switzerland’. I told her not to be silly. However, her CA125 results indicated ovarian cancer was likely and further tests were needed. As we left, I burst into tears and she was hugging me saying ‘don’t worry, I’m all right, I’m all right ’. Two days later Jo was back at the hospital accompanied by Jackie who had come to London to help celebrate our parents’ Diamond wedding anniversary. The results were not good. We agreed to keep it from Mum and Dad, so they could enjoy their celebrations. Posed photos show Jo, putting on a fixed smile for the camera, but in others caught unaware, she looks shell-shocked. They could operate earliest in April. We hated the delay but with constant cajoling the surgery was brought forward by a month. Whilst there were initial frustrations, once in the system, the NHS were superb with expertise, care and access to latest trials. Well-meaning friends and family continually put their oars in. Were we seeking out the best treatments? Why doesn’t she go privately? Should we seek opinions from abroad? Our parents became frantic, and I became a ferocious gate-keeper. Waiting with Jo as she was admitted for surgery, a nurse blurted ‘I see they have graded your cancer at stage 3’. No one had said anything about the staging to her, and she became utterly distraught. But her surgeon was reassuring. Jo fell under her spell, and I said she was developing signs of Stockholm Syndrome. As her designated next-of-kin, the surgeon rang me after the operation. The cancer had spread beyond the ovaries. ‘Should she have been seen earlier?’ She sidestepped that. ‘What was the long-term prognosis?’ With chemotherapy, and if she remains clear for the next five years, the outcome is good. We needed to keep positive and that had to be our mantra. Jo came to us to recover and each day she staggered round our local park with a veritable train track of staples up her long scar. Within the month she had bounced back and was on chemo, additionally agreeing to participate in a new trial. Her striking, silver hair fell out by the second treatment. Our mother fussed and fretted, desperate for her to wear a wig, or failing that, at least a headscarf. Jo who could be thoroughly bolshie, refused. Despite knowing the treatment was helpful, our parents would still wince each time they saw her beautiful but bald scalp. There was no known history of ovarian cancer in our Jewish Ashkenazi family but as a precaution, Jackie and I got checked and to find out if we had the BRCA gene. This was also crucial for my two girls, to protect them too. Jo’s cancer was confirmed as clear cell carcinoma and our tests came back negative. Back home, Jackie wanted her ovaries prophylactically removed. Her doctors refused saying that the benefits of keeping them, outweighed the long-term risks of removal in a healthy person. By early autumn Jo was through treatment and life took on a new pace. She was back at work and focused on a marathon swim to fundraise for research and roped in friends and family and we celebrated her determination. The anticipation of quarterly scans to ensure the cancer wasn’t kicking off again was awful. Whenever her oncologist gave the all clear, we would let out a collective sigh and then update our parents. The first thing Dad would do was rush to the phone and crying with relief tell his brother. 2012 started well. We had our elder daughter’s wedding to plan at the end of the year. Jeff and I booked a trip to Southern Africa, and asked Jo if she wanted to join us. Photos show her looking strong and fit again in the jumpseat of the helicopter as we flew over the Vic Falls; on safari and watching the wild animals with our guides and paddling in dug-outs into glorious sunsets in the Okavango Delta. May Early morning, we woke to the shocking news that Jackie’s husband had died. I went out to be with her and made repeated trips in the following months. Feeling decidedly ropey she went for a check-up. Her CA125 came back slightly elevated. A second test was done in the autumn with a biopsy to be on the safe side. She said the results were fine and there was nothing to worry about. August I went with Jo to her fourth follow-up. The oncologist didn’t beat around the bush ‘There’s a small shadow; we need to investigate further’. Jo looked like she had been punched in the face. Out of her sight he mouthed to me ‘I’m sorry’. It had returned, and she was back into more treatment, including Avastin. Jo was emotionally shattered and incredibly angry. We rallied round, but Switzerland or similar, was gaining traction. She said she would fight to keep well but was terrified of a horrible end and despite being illegal, when she deemed the right time, she wanted an assisted death. In between my work and Jo’s treatments, we were moving house, being driven crazy by the builders, and planning the wedding. To add insult to injury, both parents ended up in hospital just before the big day. Somehow the happy nuptials magically came together and I was exhausted but elated it had gone as well as it had. Jackie headed home abruptly, but I was so preoccupied I didn’t give it a thought. Jo rang the next morning to say that Jackie had deliberately kept quiet so we could enjoy the wedding. She also had ovarian cancer and was having surgery as we spoke. Stunned and appalled I had to break another piece of devastating news to our parents.Typical of them, the first thing they asked, was what they could do to help. My normally low blood pressure shot up. Physically and emotionally I knew that I had to adapt to be able to cope. I started going to the gym to help decompress and was introduced to a therapist who specialised in illness and family dynamics. Over time she became my touchstone and kept me sane in the dark and difficult times. I also insisted that my parents accept permanent live-in care. Dad always prepared for rainy days and now, now it was pouring. Jeff was amazingly patient, but he had his own health issues. In early 2013 there were three of them going through treatment at the same time – Jo with her second round of chemo, Jackie with her first and Jeff on radiotherapy. Jackie, thankfully sailed through. Her resilience and determination was extraordinary. Like Jo she wore her badge of ‘no hair’ with pride and defiance to the cancer. I was checked again. With one close familial link, the chance of having ovarian cancer was 5%, but with two, the risk went up exponentially to 15%. It was a no brainer and I had an oophorectomy. To ensure no stone was left unturned, further opinions were sought and confirmed that Jo was on the gold standard treatment. However, the Avastin caused joint pain and Jo said it felt like she was walking on shards of glass. Her circle of friends was becoming increasingly supportive but she was also researching assisted dying and making plans. She drew the closest of her friends into a pact, a terrible ask; that they would be with her if she did the deed despite all the implications. Whilst I respected her wishes, I felt utterly conflicted. Jo’s cancer went into a second remission for about six months. At Christmas, we went to Spain together and although very tired, she seemed to enjoy the trip, even doing some cycling. She constantly wore a scarf around her neck and when it slipped, we noticed a tumour starting to form. Jackie and I had organised some overdue travelling in early 2014. Jo said she was fine for us to go but would only briefly answer our calls with no real indication on how she was. On return, she told us that she had, at best, until the autumn. The hospital arranged radiotherapy to reduce the tumour on her neck. They made up a mesh mask which looked like something out of the Man in the Iron Mask or Metropolis. Once the course was completed she took the mask home and there it was in the corner of her living room, propped up on a chair, with a scarf wrapped around its neck, and a cigarette hanging out of its mouth. In addition to further chemo she agreed to go on a phase one trial – one of the first worldwide to take a new drug without any knowledge how it might affect her. Poor Jo – six weeks of hell with 24/7 skin irritation and she plunged into a deep depression. They pulled her off it and she started to recover. The hospital said it was now time to refer her to her local hospice, to take over with palliative care. Jo detested the idea but reluctantly went and accepted counselling. At the first session she mentioned her plans for an assisted death. The counsellor panicked. Until Jo had a psychiatrist’s assessment to confirm she was of sound mind, they refused to see her again. Jo acquiesced and the psychiatrist confirmed she was as sane as the next person. But the trust was broken, she didn’t want to die in a hospice and we worried how best she could be supported and avoid an assisted death. I took Dad to the local park and as we sat in the sunshine and I told him about her prognosis. Selflessly he said ‘I wish it was me’ and then ‘What can I do to help her?' A friend suggested I contact a recently retired palliative nurse she knew and Annie came into our lives. Jo tested her with her thoughts on assisted dying and whilst Annie’s were the polar opposite, she rose to her challenges. She became integral to provide peace of mind and wonderful medical know-how, and acted as a go-between Jo and the hospice. I bless the day we found her. In all the sadness and worry, our family did have something very positive to look forward to. Our elder daughter was expecting her first baby in October. The beginning of a new generation. Jo still had her good days but was getting weaker and starting to rely on oral morphine to control her pain. The hospice organised a wheelchair. Jo was appalled. She wanted at least a self-propelling one. A second one was sent over and we managed to slowly walk over to her park, but she was too weak to wheel herself back home. The chair wasn’t used again. Over the last few weeks, a rota was set up so she had someone with her day and night and on 15 October, days after her 52nd birthday Jo passed away peacefully at home surrounded and supported by family and close friends, in particular, Annie who remained by her side for the last 36 hours without a break. Her arrangements for an assisted death went untouched. The trio was returned to being a duo once more. Jo once told me that she worried she might die on the same day that the baby arrived; but that didn’t happen. The little one diplomatically stayed put and made her appearance 10 days later. For weeks, worlds were colliding, and our letter box was a mix of condolence letters and cards of congratulations. Time does soften loss and when I think about her, I can laugh about the daft things we did together and her feistiness. But I particularly miss her when I want to ask for her opinion and feel sad and regret the extra years we could have had together. Losing a sibling for me, feels as though I have had a limb amputated. But in all the sadness, an abiding and comforting memory I hold is of my nearly 90 year old Mum; having just lost her beloved youngest child, holding her first great-grandchild in her arms and smiling up at me. Postscript I totally respect the individual’s choice regarding assisted dying, and if push came to shove, I hope it is there should I ever want it. But I am grateful we found a way to ensure that Jo was well-supported to the end so her death did not include that and there needs to be more Annies in this world. As part of her legacy, the family worked with the hospice, funding advanced communication training to ensure staff, from consultants down would be confident to have open and supportive conversations with those who are at the end of life. Over 200 people connected with the hospice have done this training to date, which should have long lasting benefits and we are sure that Jo would approve. Today, Jackie remains clear of cancer. We still question whether Jo could have been picked up earlier and poignantly acknowledge that it was through Jo’s diagnosis and Jackie’s intuition to get checked that her ovarian cancer was caught early. Jeff’s lymphoma became systemic in 2020, but due to advances in medical care, he was able to have treatment that wasn’t available 10 years ago and is doing well again. However, ovarian cancer still tragically takes the lives of over 4,000 women in the UK each year. There is still no screening programme for the disease and there needs to be better awareness of the signs and symptoms, and investment into research to improve outcomes for those diagnosed. They can’t come too soon. . If you would like to talk about any of the topics mentioned in this article, please call the Ovacome support line on 0800 008 7054 or email [email protected] (Monday to Friday, 10am to 5pm).