Carol's story

Patient Stories

10 Jan 2023

"I’d always been aware of LOROS but my first real connection came when my cousin was diagnosed with breast cancer 11 years ago. It was then that I suddenly realised what it was all about. Then 7 years ago, my Mum was diagnosed with pancreatic cancer and given 6-12 months to live.

Mum was a reluctant patient. She didn’t want any fuss, didn’t want to talk about it. She was Dad’s carer, he was living with Parkinson’s and then dementia, so she was busy and didn’t have time for her own illness. Both her patients had died from cancer, she had cared for them up until then, and it left her with a distrust of hospitals. We didn’t talk about her own cancer at all, ever, even on the day she died.

Mum was visited by a LOROS community nurse specialist who offered to refer her on to other LOROS services like Day Therapy. She didn’t want to go of course, so the nurse suggested Complementary Therapy – Mum might like a massage or relaxation session? ‘Why would I want that?’ she said.

In the end I took Dad to the Hospice for a massage. I thought it would help and give Mum a bit of time to herself. Dad really enjoyed talking to Angela, the Complementary Therapist.

Mum was outliving her prognosis, which was wonderful but everything felt hugely uncertain. Mum continued to hide everything from us – it was her way of protecting us but I felt completely powerless. I was very worried that she’d get Dad’s medication wrong, as her symptoms worsened.

I spoke to Brenda in the Compassionate Neighbours team. She arranged for a volunteer to come and visit Dad, Malcolm. They had shared interests in motorbikes, football and driving and would chat away together. Mum always stayed in the room. Malcolm was lovely – I remember he brought back postcards and a stick of rock for Dad when he went on holiday.

It was great because Malcolm kept an eye on Mum during his visits so we were aware of any changes. Brenda then rang me if there was anything I needed to know about. Once he reported that she was looking very tired and unwell and she’d lost weight. So I popped round to see her and bring her food. She wouldn’t tell me, so it was very helpful to have Malcolm visiting. Day and night, I’d be wondering what to do, how to support her, turning it over in my head, it was so stressful, wondering if her cancer was starting to impair her decision-making or ability to remember important things.

Then in March 2021 Dad died. At Brenda’s suggestion, Malcolm carried on visiting. Mum didn’t really want him to but she certainly didn’t want anyone else, so she agreed.

I remember I popped in to the Hospice with a donation from Dad’s funeral. Mum came in and sat in reception. I thought it might have been a break through but it wasn’t. She still didn’t want to engage. It was so frustrating. I just wanted to talk, for her to tell me how she was feeling and what her symptoms were, but she just couldn’t.

As Mum’s disease progressed she became even more closed off. In June, it was Dad’s birthday and me and my daughters spent the day with her. Mum didn’t want to even acknowledge it and it wasn’t until the afternoon that I raised it and suggested we toasted Dad. It was hard on all of us.

When Mum approached the end, it was pretty dreadful. It took some time and difficulty to get her comfortable. When things felt desperate I rang Brenda just to ask, what I should do, who should I speak to? She was just amazing. She always found out the answers I needed and always rang me back. She was an absolute port in the storm for me and my family. She removed all the confusion and sorted everything for us. Always reliable and so compassionate, she helped us through such a difficult time, as did one of the LOROS doctors who was also very helpful.

Mum died just before Christmas in 2021.

Now, nearly a year later, I still feel grateful to LOROS.

As a small family, the impact of this whole period on me, my husband and two daughters, was huge. We all just got on with it, much like my Mum. My girls were so close to their grandma and we are all forever grateful for the support that they also received from LOROS. They are very active with their own fundraising as a small way of giving back.

I always think of them first when there are opportunities to support a charity. My eldest daughter ran the London marathon to raise money and when we were clearing out Mum and Dad’s house, we donated the contents to LOROS. Recently I organised a Christmas craft fair and we had a raffle with all proceeds to LOROS. It will always have a special place in my heart."


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LOROS, Groby Road, Leicester LE3 9QE
Fundraising Regulator