What matters most?

Cecilia

Cecilia’s mum Ann died in January 2023, after being diagnosed with secondary cancer in the previous November. Ann lived in Llandrindod Wells with her husband Vic and was a huge part of the local community.

“She was brilliant: Adventurous, loved the outdoors, and walking. She did quite a few long distance walks. Her partner Vic and mum did Land's End to John O'Groats with a tent, just them, they did the whole coastal path of Wales. There's a famous walk in Europe, called the Camino de Santiago that they did as well it took about three months. They were really into having adventures later in life.”

Her mum's health issues started in 2020 coinciding with the start of the COVID-19 lockdown in the UK. “I remember the very first day that lockdown was announced my mum had to go to the hospital to get the results of a biopsy. I thought it was strange that she had to go there when no one else was allowed to leave their house. Obviously, that's because it was bad news. She had cancer, the biopsy showed that she had cancer of the oesophagus. So, during that time, from March, up until September, she started going to appointments and had lots of tests and scans. She had chemotherapy and radiotherapy over six weeks that summer.”

The cancer didn’t respond well to the chemotherapy and radiotherapy and Ann needed to have an operation to remove her oesophagus. It is a huge operation where the stomach is stretched to form a new oesophagus. “They had to be sure that she was fit and healthy enough for this operation because she would have been 77 at that stage and it's a big operation. The operation itself was going to last eight hours, and then it was like two weeks in hospital to recover. They felt like they had got the whole cancer out by doing that massive operation. She recovered from that. We all learned a lot about medical science during that time and we're amazed by it.”

Whilst she was in hospital after her surgery Ann had to learn to eat and drink again and be able to pass a test called the swallow test. She was advised that it could be a long road of recovery, about 12 months, and that there could be other side effects from the operation. “There were a few problems afterwards, but she dealt with them all well. We just had some laughs about things that happened, like fainting in the toilets, and cleaning up after her and things like that, she always dealt with it well so she made it easier for all of us by being brave. She didn't really get 100% better from that but she was back to a kind of a normal life, she went out walking and started to feel really good again.”

It was during one of her walks when Cecilia’s mum slipped on ice and ended up breaking her hip. A stay at the hospital was needed and a metal plate was placed in her hip. Another road to recovery was started, which included physiotherapy. “The physio would come around to the house and be impressed with mum, saying ‘I've never seen anyone recover this quickly from a broken hip, you're doing amazing.’ She was so determined to be walking again and recovered fully.”

After a few other niggly issues, in November she went for a couple more tests. Sadly, the results showed that Ann had secondary cancer of the pancreas that had spread to her liver. All options were discussed with the consultants and the team involved in her care. Her choice was to have palliative care and not to have any further invasive therapy. “Mum told me the news when she got home, the Macmillan team and the staff from the hospital and the nurses were really supportive. They talked it through with her, they just allowed her to come to a decision really, they said, ‘Go home and think about it, think about what you want to do, and then ring us up anytime.’ They were fantastic all the way through. Mum chose just to have a nice quality of life for however long that might be, which was going to be a maximum of six months. In the end, it was about two months. It was so quick. In the beginning, she was pretty much fine. Walking still and recovering well going back to all the things she would love to do. In December she stayed at home every day. She started to lose a lot of weight, she was already really small.”

Cecilia and her mum smiling. Photograph courtesy of Cecilia

After a few other niggly issues, in November she went for a couple more tests. Sadly, the results showed that Ann had secondary cancer of the pancreas that had spread to her liver. All options were discussed with the consultants and the team involved in her care. Her choice was to have palliative care and not to have any further invasive therapy. “Mum told me the news when she got home, the Macmillan team and the staff from the hospital and the nurses were really supportive. They talked it through with her, they just allowed her to come to a decision really, they said, ‘Go home and think about it, think about what you want to do, and then ring us up anytime.’ They were fantastic all the way through. Mum chose just to have a nice quality of life for however long that might be, which was going to be a maximum of six months. In the end, it was about two months. It was so quick. In the beginning, she was pretty much fine. Walking still and recovering well going back to all the things she would love to do. In December she stayed at home every day. She started to lose a lot of weight, she was already really small.”

There are no local hospices and there was no full-time care available or offered for her mum but between her partner Vic and Cecilia, who lived close by, they provided her care at home. During her time at home in December the palliative care team or the Macmillan nurses would visit. “They were really good as well. Any questions I had they would answer. On the 28th of December, mum just got up to go to the loo and she couldn't stand, her legs were just gone. That was it. She never like stood up again. Luckily a bed had just become available at the local hospital in Llandrindod, which was amazing because the nearest hospice is near Hereford, which is about an hour away. We wouldn’t be able to cope with her at home if she was immobile.”

“It makes you feel better for her to be in a place where they can manage her pain really well. So, she moved into the hospital that day or the next day. Mum was in for a month. It was great because I went every day, we all went and her friends could go and see her. The team there was so good. You know, we could kind of pop in any time we wanted to because of her special palliative care status. The staff just kind of leave you alone enough and they're there if you need them. Vic quite often stayed all night. They'd bring him comedy midnight feasts of sandwiches and crisps, chocolate bars. They kept getting Coca-Cola for Mum because, after a whole lifetime of living healthfully, she got a real taste for Coca-Cola at the end.”

Whilst undergoing appointments and her earlier medical issues the support received by the family was good, from the hospital team at Merthyr, the Macmillan nurses and the GP surgery. “The support was absolutely fantastic. We could have rung up at any time, we had a lot of helpful information and advice. It was tricky when she had to go for tests and things in Hereford because it's a different health authority. The communication then, is hard. You must wait for them to send stuff to your doctor. The travelling involved when you live in a bit of a rural location, the way things need to link up, and how everyone's speaking to each other could have gone a bit better.”

The support of the Bracken Trust has helped the family and continues to do so after Ann’s death. The death of a loved one is so difficult, and grief can become overwhelming, so having support to help you through is priceless. “I've had really good support here. They gave my mum excellent support, while she was going through the cancer. I've been coming here, and the support has been fantastic. I think that has helped me. Also, how well my mum coped with it all made it really easy for the rest of us. I would still do anything to have her still here, to be able to phone her up and tell her all about the comedy things that have been happening. I feel sad when I realise she's not here. Sometimes it's really painful. I feel like it was too soon. What usually ends up happening is I'll be thinking about her, and then some hilarious memory will come up and make me smile. She would say ‘After I've gone Cecilia, I'm sure you'll miss me and you'll think about me lots, but then just think about how you never have to go to another bookshop in your life if you don't want to.’ Things like that. I usually end up with something that makes me smile.”

Cecilia believes that having the time to see her family and friends would have mattered most to her mum. “I think that having the time to see her friends and family, was really good for her. She had said, it was really nice to actually know that it was coming to an end. She did a little interview for somebody about improving the cancer journey and there was this quote, that really stayed with me, where she said, ‘she'd spent a lot of time waiting over the two years, waiting for test results and waiting for treatment and waiting for diagnosis, results and biopsies. Then, in the end, she wasn't waiting for anything.’ She was just at peace with it all. She felt like she was ready. I think what mattered most as well was she was happy at the thought of not being a burden.”

“My mum would like to be remembered as somebody who lived life to the full... And that doesn't mean that every day was full, but that she loved life. She had said that she’d had a really good one... I think she'd like to spread her joy for life to other people and in the community. That's how she will be remembered, definitely.”

In loving memory of Ann (1943 - 2023)

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The Bracken Trust

The Bracken Trust supports anyone affected by cancer including patients, bereaved relatives and families/carers. From their base in the beautiful Llandrindod Wells, Powys, the offer information, advice, support, counselling and complementary therapies. The Bracken Trust have created and exceptional centre for cancer care and empowers people to live with, through and beyond cancer.

To learn more about the Bracken Trust, click here.

Source: https://brackentrust.org.uk

Macmillan Cancer Support

Macmillan Cancer Support provide services for people living with cancer at every stage of their cancer experience. Macmillan provide emotional, practical, physical and financial support and are 98% funded by voluntary donations. Fundraising for Macmillan is essential to make sure they can deliver the vital support people living with cancer need.

To learn more about Macmillan Cancer Trust, click here.

Source: https://macmillan.org.uk

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