Darren’s mum Linda was diagnosed with ovarian cancer and passed away in September 2016. Darren has since run the London Marathon in memory of Linda, and also has plans to complete this year’s Great North Run. He tells their story from her diagnosis to her last days.
Before my mum was diagnosed, she had had IBS for a few years. It was particularly bad in the December of 2013, and she kept going back to the GP when it flared up, but he continued to diagnose the symptoms as IBS. Mum began to feel very bloated and lost her appetite. She had nausea and needed to urinate constantly too. It was painful and she couldn’t sleep at night, which was distressing for her partner Tony, my sister Lorraine and me. We were going to visit Mum regularly and calling every day. She was referred for a laparotomy, but nothing was found.
Mum had an uncomfortable Christmas, but in the months after and into summer 2014 she seemed to get much better. She was looking really well; some people said she looked 10 years younger. I had a picture taken around that time with her at a family wedding – and I treasure it.
Her symptoms then got worse again – worse than ever – and the doctor prescribed more IBS medication and even said that a recent bereavement she had had was causing a flare-up in symptoms and that it was stress-related. In the end I remember I got cross, and asked Mum to have blood tests. I think she was frightened to know the truth. We know now the blood tests revealed a very high level of CA125, and doctors explained that this would need further investigation. Mum awaited a scan appointment.
A sudden diagnosis
Then suddenly, I was in the office one Monday and saw I had missed several calls. Mum had been taken into A&E after collapsing, and there, after more tests, doctors found stage III ovarian cancer. I will never forget taking the call from my sister to tell me that – it was October 2014.
The bloating had been caused by a fluid build-up (ascites) and after Mum was admitted to an oncology ward they drained 12 litres of fluid from her tummy. I think of it like carrying six two-litre fizzy drink bottles around – it must have been so uncomfortable for her, but the procedure made her so much more comfortable, she had a lot of relief from that.
One thing about the whole journey of her illness that I found difficult was that my mum was stubborn – she wouldn’t allow anyone in the family to be present when the doctors were around. I think she knew how serious it was and wanted to keep it from us. We also learnt quite early on that the doctors couldn’t operate because of the position of a growth in her abdomen. Doctors told her the best course of treatment was chemotherapy, and she began treatment. The chemo unit was lovely – they created the best atmosphere in there and my mum spoke very highly of the staff.
Mum found losing her hair difficult – she had always had very glamorous hair. In the end, she shaved it all off and got a very nice wig. We celebrated that Christmas in 2014 with her grandsons and family around her.
Managing the symptoms
With the first round of chemotherapy behind her, Mum went on a clinical trial, and from spring 2015 was treated with bevacizumab (Avastin). We knew then that it was a case of managing the symptoms and keeping the cancer from spreading, but this did give her a lot of hope and she was positive about taking this new drug.
Mum’s hair began to grow back. She’d always dyed it before she got ill, but now she decided it was time to let it grow naturally. It came through as a beautiful silver colour and really suited her. She styled it her way and it made her feel so much better about herself.
The Avastin continued over weeks and months, and life got back to normal a little for almost a year or so. Mum had an appointment once a month – and I know now that she didn’t want to know how long she had left, she wanted to enjoy her time.
Around the same time as my mum, my aunt had also been diagnosed with ovarian cancer. Her disease progressed very quickly and she died before my mum did. This was hard for Mum because she loved her very much, but of course it frightened her as well. My aunt’s funeral in early 2016 was incredibly hard for her, and for all of us of course.
In June 2016, Mum spent the whole day at another lovely family wedding, it was a long day for her and she did so well, but this was to be her last ever family day out. Soon after that she began to feel ill again, and had some of the same symptoms she had experienced before - bloating, abdominal pain, and feeling full.
A wonderful hospice
On one of my visits in August 2016, she was in so much pain and distress that we called an ambulance. Mum was taken to hospital, where she spent several weeks, then a hospice. I had a trip abroad with friends planned – I wanted to cancel, but Mum insisted I go and have fun. I had to cut my trip short because she deteriorated so quickly, and her months left with us suddenly became days. When I got back, they set up beds next to my mum’s bed for me and my sister, and even let Mum’s beloved dog come to visit her in the hospice. It was wonderful. I will always be indebted to the staff there – I can’t find words to speak highly enough of them. Mum died not long after I got back from my trip. It was 8am on a Wednesday. She had been in such pain, but now she was peaceful, and still.
I can’t say enough good words about Salisbury Hospice. What I saw there made me think that the nurses, doctors and other staff there are angels on earth. They treated my mum with so much dignity; she was so beautifully cared for. There I met the first doctor that could sit with me and explain Mum’s treatment and condition to me, and that she probably wouldn’t be with us that Christmas. It was upsetting to hear, but she did it in such an empathetic and compassionate way. I needed to hear it because I was so tired of coming to my own conclusions – Mum wouldn’t share anything because she didn’t want to know anything, and I think she was doing it to protect us, not to be secretive. I do wish she could have shared though, because then she wouldn’t have had to go through it all alone.
I had some counselling after Mum died, I think that was important, and have had some down moments – but I am very self-aware of that and how I cope. I’m a natural ‘get on with life’ type of guy. It helped me to keep busy – sorting out Mum’s estate, then raising money for Target Ovarian Cancer and running the London Marathon this year. But sometimes it still hits you out of the blue – everyone’s experience of grief is so unique.
Now I’m passionate about raising awareness of ovarian cancer, especially among GPs and doctors. I miss my mum every day. She was an incredible woman, and I’ll treasure her memory and this very special picture that was taken before she was diagnosed. If her story can help just one woman find this disease faster, and go on to beat it, I know my mum would be happy with that.