Peter & Jean’s story

Dr. Peter Rookes is a trustee of BVSC and also does a range of wonderful work in and around Birmingham, including working with Scouts; Birmingham Council of Faiths; USPG (United Society –Partners in the Gospel); and Healthwatch Birmingham.

Peter’s wife, Jean, was diagnosed with ovarian cancer and passed away in December 2016.

In this piece, he tells their difficult story from her diagnosis to her last days. He talks about how he has coped with his grief and why he is so committed to raising awareness of the symptoms of ovarian cancer.

together-circle.png

Jean and I were married for almost 40 years, and for the last 25 of those years we worked together. Grief gets me sometimes when I think I’m coping well; I get caught out by a memory, or something someone says.

The thing I miss most is talking with her.

Jean had many abdominal and gynaecological symptoms over the years, but we never associated them with ovarian cancer. She had a variety of tests – all with non-specific outcomes.

We both worked in Papua New Guinea – I was National Health Secretary and Jean was a National Village Health Volunteer Coordinator for the Anglican Church. We were both pretty fit. We’d always been active walkers, and had to walk long distances through challenging terrain to our health posts in Papua New Guinea.  Jean was even a champion marathon runner at one point. It was about 6 years after we returned to the UK that we noticed that Jean’s symptoms had seriously worsened.

Why I’m raising awareness of the symptoms of ovarian cancer

Jean started to struggle with bloating, abdominal pain and bowel symptoms – we knew something was wrong. Eventually, we managed to get an urgent appointment to see the GP, and Jean was diagnosed with cystitis. If I could live my life over again, I would have taken her to the hospital at this point. It is so important for GPs to be trained to spot these symptoms and associate them with ovarian cancer – that is why I’m telling our story.

When her symptoms persisted, we returned to our GP who referred her to a hospital consultant. Another few weeks passed, during which we decided to go away for the weekend, but we had to come home early. I called NHS 111 and a paramedic sent her straight to A&E. During an emergency operation the following day, doctors found abnormal cells and sent them for testing.

Treatment

Jean’s official diagnosis was stage III high grade serous fallopian tube carcinoma.

She had six cycles of carboplatin chemotherapy.  After that, we were told to look out for the symptoms of ovarian cancer because it could be a sign that it was returning, so when Jean became bloated I immediately contacted Birmingham City Hospital. After an MRI scan she was put on another treatment.

Jean was determined to keep as active as she could, and I did my best to keep her involved. We both knew that her condition had advanced to a stage that meant her life expectancy was going to be seriously shortened, but she wanted to keep up her mental health, meet friends, go outside and live as normal a life as she could.

We reached a point when her oncologist told us that the clinical picture for Jean was one of disease progression, and she was switched to a new round of dose-dense carboplatin and gemcitabine chemotherapy. But then her CA125 level rose and she developed ascites. Her surgeon explained that he would carry out further surgery if he thought it would be beneficial, but he believed that it could cause further complications.

We realised we were coming to the end. The disease was progressing because Jean couldn’t have further chemotherapy, because she was too ill to cope with the side effects.

Climbing the stairs

Jean found she had less energy, but although we had a bed downstairs, she still went up and down the stairs every day. I put lots of family photos in the stairwell and I would say to her, “there’s no rush to get upstairs”. We’d climb the stairs together, slowly, and as we went up and down, we’d talk  about all the things in the pictures, our family and all the things we’d done together over the years.

She continued to manage many things herself, but eventually she started to have more and more difficulty washing herself and doing up buttons. She became very bloated and had difficulty eating. We tried different types of nutritious soups and drinks. Our GP agreed that I could give Jean her morphine injections. My younger sister had had cancer and I remembered how much pain she had been in. I didn’t want Jean to go through that – and she didn’t.  Although she had had good hospital care, she was determined that the hospital was not where she wanted to die. She wanted me to nurse her at home, which I did for the last six weeks of her life, but she had reached the point where she didn’t want anyone else to see her, not even our children or grandchildren.  She wanted them to remember her as the lively person she had always been.

Because of Jean’s difficulty eating and weight loss, the hospice thought it might be a good idea for her to be admitted for symptom control. A bed was found for her very quickly, and within 3 days of her admission she had lost consciousness.

I spent much of each day with Jean at the hospice, but chose not to sleep there. I had seen so many people waiting in hospitals, hanging on for the end of someone’s life. When they finally did leave, they’d get to the end of the drive and the person they’d been waiting for would die. It’s almost as if, by leaving, they’d given the person permission to let go.

Smile

Jean died very peacefully at 6am on 15 December 2016.

It’s a strange thing to say, but as well as feeling very sad, I was relieved. She had been so alert and had led such an active life, that she would not have been able to cope with inactivity for very long.

Jean wanted her memorial service to be a happy occasion. We had three clergy, including a previous Bishop in Papua New Guinea, and played only joyful songs.

Losing Jean was a great challenge to my faith. She had given so much to so many people. Sometimes I’d ask myself why she was taken when she had more to give. One thing that helped a lot was preparing a commendation book so that people could write messages about her after she died. I didn’t want a situation where I didn’t talk about her and friends avoided talking about her, or a situation where I talked about her all the time. The book was a good way of talking about Jean in a natural way.

The reason I’m sharing my story now is that I want to raise awareness of the symptoms of ovarian cancer. If things had happened sooner, Jean could have responded better to treatment. I want to share my story to make more women and their husbands or partners aware of the need to push hard for their healthcare.

Before Jean died she made me promise two things, Firstly not to spend too long grieving, but to move on, and secondly to continue the interfaith, humanitarian, scouting and overseas health work we had worked on together. It was very hard, and adjustment has been very slow.

Now, as I sit here and look through Jean’s commendation book, two words stick out the most: ‘inspirational’ and ‘smile’. I only need to glance at the photographs in the stairwell to marvel at her courage and dignity, and see that Jean has a smile on her face in every single one. It’s wonderful to be able to reflect on that.

Here’s how you can get involved with the charity Target Ovarian Cancer and help to raise awareness of ovarian cancer and its symptoms:

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