Fiona’s story – as told by husband, Kevin

Fiona was diagnosed with breast cancer, and secondary cancer of the liver, in 2020. The diagnosis was incurable, and Fiona died just over a year later. Her husband, Kevin, shares Fiona’s story, and how important Penny Brohn UK was in helping Fiona to live well with cancer.

Could you tell us a little bit about Fiona, your family and what your family dynamic was like.

When Fiona passed away, we had been married 35 years and had two daughters together. I suspect my daughters would say that Fiona was the glue in the family – the linchpin around whom the rest of the family lived. Both girls have left home and, when Fiona was diagnosed with cancer, it was just the two of us by ourselves. I had recently changed jobs, which had brought us to Somerset, and no longer having children at home meant that we were rediscovering the real pleasure and friendship of who we both were and of the person we each had married.

Fiona was an avid gardener – she absolutely loved gardening. It was both her personal and professional passion and she worked as a freelance gardener both where we previously lived in Oxfordshire and again in Somerset. The house into which we moved had a large garden and she enjoyed changing it into her own place of beauty and love.

We are very family minded. Although my daughters don’t live near me, we are close-knit and remain supportive of one another. Family is important to us, and this importance extends to the wider family, including Fiona’s mother, brothers and younger sister.

Could you talk us through Fiona’s original diagnosis, sharing a little bit about how she handled that news at first and how that impacted not only her personally but the whole family.

Some time between Christmas and New Year 2019 Fiona found lumps in her breasts. At first, we weren’t concerned about this because she had had lumps before and they had proved to be just bits of hard tissue. But, because they were there, Fiona went to the doctor to have them assessed. Unexpectedly, this led us to being asked to go to Taunton to have a conversation with the breast cancer team and we then suspected that it was not going to be good news.

Things happened very quickly. By the end of January we had seen the consultant, and they had told us not only that Fiona had breast cancer but also that she had secondary cancer in the liver which could not be treated, only managed. Their prognosis was that Fiona had only another two and a half to three years before the cancer was likely to take her.

I think initially Fiona didn’t really want to believe this was happening to her. It was quite difficult because, while Fiona was finding it hard to come to terms with the news, I was thinking “this is what the future holds for us”. I had to adjust to the fact that she wasn’t going to be with me very long, and certainly not as long as I had always assumed. I believe I did much of my grieving for Fiona then – at that early stage of our journey. This difference sometimes made things tense between us.

Both our daughters were already living away from home, and we had to work out how to let them know what was going on. We drove down to Falmouth to tell our elder daughter, but our younger daughter was working in China at the time. Therefore, to let her know about our situation, Fiona flew over to Cambodia where our daughter happened to have pre-arranged a holiday. There they met up and Fiona was able to break the news face-to-face. I don’t think Fiona told either daughter the prognosis – how long her life was likely to be. I believe I was the one who did that in the end.

Initially Fiona was put on to hormone treatment to see if that could manage the cancer. However, it was clear fairly quickly it wasn’t working and so, in March 2020, Fiona was advised that she needed to go on to chemotherapy. This meant that Fiona had to start to deal with the challenges of chemotherapy at exactly the same time that COVID come along.

I don’t know whether Fiona felt this, but I have always believed COVID was a mixed blessing for us. Whenever anyone undergoes chemo, they are more vulnerable to infections. Therefore, even under normal circumstances, we would have had to be more careful as a couple about what we were doing in case Fiona picked something up. However, because of COVID, everyone was being careful and so there was a sense whereby our situation didn’t actually feel very different to anyone else’s. Our life felt “normal” because everyone was going through the same thing. The downside of COVID was that Fiona couldn’t see her family, and I think this is what upset her most – not being able to see our daughters, her mother, and her sister, and to obtain love and support from them.

One situation where COVID affected me personally was having to drive Fiona down to Taunton for her chemotherapy, and then not being able to go in with her but to have to wait for her outside in the car park. The first time that happened – seeing her walk in on her own – was really difficult. You want to be there for the person you love. I knew Fiona didn’t like the idea of chemo, and I couldn’t be with her when she had to deal with something she really didn’t want to go through but recognised had to be done. That was hard.

Fiona initially had six sessions of chemo at three-week intervals, and then the consultant took her off to see how she got on and what impact the chemo had made. This was between the first and second COVID lockdowns. However, at the same time – in September 2020 – Fiona’s younger sister became ill and went into hospital. She herself had been in remission from breast cancer but it had come back viciously. She passed away within days and we then found out she also had secondary cancer of the liver. This was completely unexpected and a huge shock for Fiona and her family.

Soon after, test results revealed that Fiona was getting worse and so the consultant put her on to a different course of chemotherapy. In May 2021 Fiona started having stomach problems. She initially thought it was indigestion but hearing her talk about it with the GP made me think “this could be the cancer.” I therefore persuaded her to call the cancer nurse to obtain their opinion and that same day Fiona was admitted to hospital. She passed away a week later.

What was Fiona’s first experience of Penny Brohn UK?

Fiona first heard about Penny Brohn UK when her younger sister was diagnosed with breast cancer around 2015. Her sister was treated in London but one of the organisations she turned to for support was Penny Brohn UK. Therefore, when Fiona herself found she had breast cancer, her sister pointed her in the direction of Penny Brohn, and this led to Fiona contacting the charity to see what support she could access.

The first time she directly communicated with Penny Brohn was just when the charity had to move its services online because of COVID. The pandemic meant that there couldn’t be any face-to-face support from anyone – no meeting up with others, away days, group sessions together, not even seeing her GP or consultant let alone family and friends. I am very appreciative of what Penny Brohn UK was able to offer at that time because Fiona found it difficult to get help from anywhere apart from the NHS’s physical management of her cancer.

Fiona found that she was able to tap into online support through Penny Brohn. It was not ideal, but it gave her the chance to talk to people, join various groups and sessions, take part in exercise classes, listen to the nutritionists – the sort of things that no one else was able to offer at that time. Fiona would really have liked opportunity to meet up with people, particularly others in the same position as her, because she was very person-oriented and would have benefited from just chatting and sharing experiences with others. The fact that Penny Brohn looks at other aspects of her life – not just the treatment of the cancer – was important in helping her adjust to her circumstances.

As time went by, I would say that Fiona appreciated Penny Brohn UK increasingly. She didn’t like the chemo, and what she valued was the fact that Penny Brohn UK looks at the whole person, not just the physical part of our lives. We knew the NHS was dealing with the physical challenges of cancer, but this left a gap as far as her mental, emotional and spiritual wellbeing was concerned. Penny Brohn helped fill that gap and it was reassuring for me to know that there was an organisation that was looking at her wider needs, and meeting these in ways that I myself sometimes wasn’t able to do so.

Do you think Fiona would have been in a different situation if it hadn’t been for Penny Brohn UK?

Fiona would have struggled more if there hadn’t been somewhere, or someone, she could turn to that considered her more widely than how she was coping with the physical effects of chemotherapy and the impact it was having on her body. In Penny Brohn UK she found resources that helped not only with her ups and downs but gave her greater peace in her mind and heart. The fact that Penny Brohn UK offers support in areas such as stress counselling, relaxation and meditation was of massive assistance to her.

At times Fiona & I were in different places. When we first got the prognosis I went through the huge shock of knowing I would lose her and then found I had to think “OK, Fiona is going to die sooner than I ever thought,” and so what is that going to mean for both of us – for example, about what care Fiona would need as and when her condition deteriorated, and how and when that could be provided.

Fiona looked at it from a different perspective – at what could she do to resist the cancer, perhaps by being mentally a better place or adopting a different diet. She was constantly thinking about what she could do to fight the cancer and therefore perhaps live a little longer. She strongly believed that some things that Penny Brohn UK were able to suggest regarding her wider wellbeing would put her in a better place and this went beyond the support she was receiving from the NHS.

Is there anything else that you wanted to add?

Since Fiona died, I hope that the support I have been able to give to Penny Brohn UK in her memory will mean that some good can come out of a situation which neither Fiona nor I ever thought we would be in. If the contribution I have made is of help either to people like Fiona who themselves have cancer, or to those supporting them on that journey, then it is comforting to know that something positive is coming out of the circumstances that she and I went through.