“Jayne, who is a Healthcare Assistant at Rennie Grove, regularly came to sit with Celia and knowing that she was with a competent person gave me the confidence to pop out for an hour or two. Jayne understood that Celia didn’t have much energy to talk, and so either she sat quietly with her, or she sat in the next room and was there if Celia needed her for something.”
Professor Celia Brackenridge OBE was an international sportswoman, a campaigner for women’s causes and a world authority on child protection in sport. She and Diana Woodward shared 30 years together, achieving so much individually and together. Here Diana shares their story:
“It was New Year’s Eve 2015 when Celia first became ill. We’d been to the pantomime in Aylesbury, then we went for an Italian meal but Celia couldn’t get warm in the restaurant. Over the next two months she developed a couple of heavy colds that she couldn’t shake off, but although she wasn’t getting any better she carried on with her usual hectic schedule.
"Eventually she had a chest X-ray and while we were waiting for the result she became very unwell, was quite sick and got rigor, which is violent feverish shaking. I was so alarmed that I called 111 and got an appointment at the GP walk-in centre in Hemel Hempstead. I think the GP realised pretty quickly that Celia was really quite ill and within an hour she was admitted by ambulance to Stoke Mandeville hospital. When I went to see her the next morning she told me there was something wrong with her blood. We were then told that Celia had Leukaemia.
“She stayed in hospital and over the next few weeks she went through a couple of really heavy-duty chemotherapy cycles designed to kill off the cancer cells. They made her very ill, and there was only a 40% chance that she would survive the treatment. The first cycle failed, but after a further cycle, and several more weeks in hospital, she went into remission and came home. At this point it was discovered that her brother was a perfect match for a stem cell transplant so in August 2016 we were all ready to go ahead, but the week before it was due to take place the Leukaemia came back and so the transplant couldn’t go ahead.
“We had been through so much in a few months, and now another treatment option for her was gone. There were several times during the in-patient chemotherapy that I thought that she would die. She wasn’t eating anything, was horrendously sick and, even though the staff were wonderful, she absolutely hated being in hospital.
“We were running out of options when we were offered the opportunity for Celia to participate in a clinical trial. We thought this that this could be her last chance so she agreed to take part. Once again we were dealt another blow when Celia was not selected to receive the new drug; she was picked for the control group and there was nothing that could be done to change that.
“She’d now tried all the options and was then prescribed Azacitidine that works in the same way as chemo; it was hoped that it would give her an extra 9 months of life. It actually gave her 18 months. However, it did involve about 10 days of hospital out-patient appointments each month, and a constant struggle to balance the side-effects of the treatment with drugs, made worse by permanent overwhelming tiredness.
“In terms of her quality of life then, her identity was that she was an international athlete; she was captain of the England and the Great Britain lacrosse team until the early 1980s and then she became their coach, as well as being a full-time lecturer. Later she co-founded the Women’s Sport Foundation (UK), WomenSport International and Safe Sport International. These organisations were intended to raise public awareness of gender inequality in the world of sport, to promote the involvement of women as participants and coaches, and to promote athlete welfare.
“The whole time that I knew her she was very active in this work, either speaking at conferences or running training events, or networking and trying to persuade the international Olympic committee and other sports governing bodies nationally and internationally to develop systems to promote athlete welfare. This would include processes like vetting anyone that has anything to do with young athletes’ training programmes, protocols for what happens when a complaint has been made, appointing welfare officers, and so on. She did an awful lot of this work either from home at her computer, or going out and about meeting people. Latterly she did a lot of speaking at international conferences.
She was very dynamic, but as soon as she became ill she lost so much energy and drive, and became 25% of the person she had been. That was immensely distressing for her. We moved her bed downstairs into her study, and she had plenty of visitors when she was up to it. The chemo made it hard for her to go outside as she became ultra-sensitive to the sun, so now her life shrank to being at hospital or at home.
Celia and Diana live in an idyllic property that was featured on Channel 4’s Grand Design back in 2012. “When we designed and built this house we futureproofed it either for Celia’s Mum or mine to move into, but it actually worked very well for Celia, with her downstairs room with a great view of the garden, and her own bathroom” Diana explains. “She could hear what was going on elsewhere in the house if she wanted to, but if she didn't, we could shut her door and give her some peace."
“Rennie Grove Hospice Care came into our lives quite early on in Celia’s illness. We’re quite organised people and we like to know what lies ahead so we were full of unanswerable questions. We were assessed by Rennie Grove and out of that came a referral to their family support service. Lisa has been absolutely wonderful. Over the course of a couple of years she has calmed us down! Initially we were full of questions wanting to know precisely when certain things would happen in terms of Celia’s illness. Lisa gently led us to the realisation that these things are uncontrollable and unpredictable, so you have to back off and get yourself in a place where you can accept things and respond to them as they happen, instead of feeling that you can control everything. And that has been the best thing that’s happened about this illness in terms of the services that we’ve had, as it has helped us to accept it and adjust to it, and not be thrown by what’s happened; to be ready for stuff.
“We learned to take a step back; when we were both working we had diaries with appointments up to a year ahead. We couldn’t do that any longer. If Celia became ill with neutropenic sepsis (as she had no resistance to infections) she was supposed to be in hospital within the hour to go on antibiotics, so from hour to hour I didn’t know whether I would be at home, in A&E or on a hospital ward - so you just have to calm down and go with the flow. Lisa was fantastic at helping us to do that.
“Rennie Grove Hospice at Home Nurses and Health Care Assistants along with the District Nursing team started to visit once Celia decided that she’d had enough of the relentless hospital treatments and wanted to spend what time she had left at home. Right from the point of her diagnosis, she knew that she wanted to die at home if possible. She had been an in-patient at Stoke Mandeville again, but the last time she was in hospital, in February 2018, they had not been able to conquer her infection that time. The hospital staff and the Rennie Grove nurses somehow managed to get all the equipment Celia needed to keep her comfortable at home delivered and set up amazingly quickly, and so she returned home. Initially she had a morphine pump to control her pain and the Rennie Grove nurses or district nurses came every day to monitor and refill it. However, following a problem with it Celia decided that she wanted it removed and she also stopped taking all her medication. She rallied and managed three months without pills or morphine. Her appetite improved and she was much more alert, even though she mainly stayed in bed. Some of the time she could still manage visitors, but they could tire her out too much, so I had to try and manage who came and how long they stayed.
“Jayne, who is a Healthcare Assistant at Rennie Grove, regularly came to sit with Celia and knowing that she was with a competent person gave me the confidence to pop out for an hour or two. Jayne understood that Celia didn’t have much energy to talk, and so either she sat quietly with her, or she sat in the next room and was there if Celia needed her for something.
“In the two weeks before she died Celia went rapidly downhill and I knew what to expect, having done an End of Life Care course. During her last night I rang Rennie Grove for some advice on her breathing, to confirm my judgement that she was going soon, and I sat holding her hand for six hours before she died. It was absolutely horrible but I was mentally prepared because she was so poorly. Having 27 months of the illness meant that Celia had had the chance to put her affairs in order, she had received hundreds of letters and cards saying what a difference she had made to so many people's lives, and she had said her goodbyes and had done everything that she needed to do. She said she was ready to go.”
During Celia’s illness, Diana was also caring for her mother, who died just a few days after Celia came home from hospital for the final time. She has been sorting out her affairs too. Now that is almost complete, Diana has now begun to look ahead. She has started to pick up her own life after putting it on hold for two years and is enjoying catching up with friends, looking after her grandchildren, going on holiday and getting fit again by swimming, walking and gardening.
Diana said, “Celia and I had 30 amazing years together and I am so glad that I could care for her during her illness. I miss her very much. Now it’s time for me to pick up my own life and I am looking ahead to an active and positive future.”
If you would like to read more about Celia’s remarkable life then please visit https://www.changemakers.chi.ac.uk