What matters most?

Emma

Emma was raised in Powys and lived on a small holding property designed and built by her parents. She has lots of fond memories of living there with her family. Her dad died in 2012 and her mum had been living there alone until her death in April 2023.

“My mum was very intelligent. Very well read. She loved to read. She did an open university degree in psychology and then did a teacher training course. Eventually, she became a psychology lecturer at the local college. She was a quiet person, quite introverted and a very balanced person, thoughtful person.”

In 2020 during the pandemic, her mum was diagnosed with breast cancer. She needed a mastectomy, chemotherapy and radiotherapy, all of which she had to do alone. She did this bravely and things were going okay, she was getting on with life and her normal activities. “Mum was physically feeling okay until around October 2022 when she got a chest infection. She was feeling very tired and quite breathless and had lost her appetite and we couldn't understand why. She couldn't quite fight off this chest infection. By December, she had these horrendous pains in her legs. The doctor gave her some morphine because she was in so much pain very suddenly. They took some blood from her to be tested. They called her up that evening and said, ‘You've got to come into hospital now.’ She was diagnosed with acute myeloid leukaemia the next day.”

The diagnosis was a shock for them all. They had been told that it was life-limiting, even with treatment. “It was quite devastating because it was so out of the blue. She rapidly declined. She had several infections and was in and out of hospital from December to April. She passed away at home in April.”

When her mum was given the diagnosis Emma’s brother was with her at the hospital. They had thought maybe the breast cancer had returned, so to hear leukaemia was a massive shock. “I think it was quite a blunt delivery. My brother was like, sorry, what?’ Mum was literally given weeks to live very bluntly. It was a huge shock for us all.”

The way the diagnosis was given to her mum and brother made it difficult to comprehend fully. They had been in the hospital A&E all night and had various tests conducted before the consultant saw them. “The consultant came in and said who he was. He then said, ‘You've got this type of leukaemia, it's the worst kind you could have. Even with treatment, you've got weeks to live.’ Mum said it was a very grim room and it was just very blunt. There was no conversation preceding the diagnosis to get Mum's understanding or even if she wanted the news. I think it was quite traumatic for her going from later conversations with her. I think that delivery hampered her absorbing that information and processing it, she seemed a little bit stuck in the trauma of that.”

Emma believes that handling the diagnosis completely differently could have impacted the rest of her mum’s life. Understanding that the diagnosis was a shock no matter how it was delivered but with a bit more care it would have made a difference. “It's still going to be a shock, she’d gone from having some symptoms of chest infections to being in a lot of pain very acutely, but I certainly think that if she’d not been given it so bluntly, I think some of the information that came at the diagnosis, such as she didn't know anything about that type of leukaemia, or what the treatment options were because of the trauma from the initial delivery.”

This affected further out-patient appointments when they visited the consultant. Emma found herself asking a lot of questions to get the answers that her mum needed. “He seemed to just expect her to just absorb all of this information in hospital, being so acutely unwell, and then to make a decision about treatment options.” Each time they had an appointment it was like her mum was re-living the initial diagnosis.

The appointments were difficult and her mum disliked going. “One of the things that really bothered her was this consultant. I think maybe he wanted people to understand the severity of the diagnosis. Every time we went to see him, he would be really negative and say things like ‘If you get an infection, it'd be very serious.’ Over and over again, repeating ‘It's unlikely to do any good this treatment.’ It was very negative, even though she had a good response initially to some of the treatment, there wasn't much in the way of positives.”

It was a lot to handle on top of the already devastating diagnosis. “I think if that initial diagnosis could have been handled with more care, and then ongoing appointments when the clinician had established that the patient understood and had absorbed that information and was able to perhaps make those treatment decisions about which pathway she wanted to go down. I don't think there's a need to completely reiterate all the time, the negativity of the diagnosis, because it meant that my mum's remaining time was a lot more negative than it needed to be.”

Her mum's remaining time was split between hospital stays for treatment and infections and home. Her mum knew she wanted to be home and to die at home with her family there. Emma stayed with her mum to provide care and support her. “I wanted to help her through this period. I focused my energy on caring for her. I am grateful that I had the chance to be here and do that for her. We had a lot of conversations that meant a lot to both of us. We were able to talk about things that sometimes go unsaid. We used to have quite a laugh at times too. It was like a little microcosm of me and her in our little bubble. Other people would come in and break up the day, etc.”

It was a lot to handle on top of the already devastating diagnosis. “I think if that initial diagnosis could have been handled with more care, and then ongoing appointments when the clinician had established that the patient understood and had absorbed that information and was able to perhaps make those treatment decisions about which pathway she wanted to go down. I don't think there's a need to completely reiterate all the time, the negativity of the diagnosis, because it meant that my mum's remaining time was a lot more negative than it needed to be.”

Her mum's remaining time was split between hospital stays for treatment and infections and home. Her mum knew she wanted to be home and to die at home with her family there. Emma stayed with her mum to provide care and support her. “I wanted to help her through this period. I focused my energy on caring for her. I am grateful that I had the chance to be here and do that for her. We had a lot of conversations that meant a lot to both of us. We were able to talk about things that sometimes go unsaid. We used to have quite a laugh at times too. It was like a little microcosm of me and her in our little bubble. Other people would come in and break up the day, etc.”

Emma admits that at times it was difficult as she wanted to follow her mum's wishes but sometimes, she would need to go into hospital, despite her mum's desire to stay home. “Mum didn't want to go back into hospital. At times, I could see that she was getting more unwell and that she had probably gotten an infection. I'd have to break the news to her that she would need to go into hospital and she would fight that with me. That could be quite a strain. I didn't want to upset her but at the same time, I needed her to go into hospital and have that treatment.”

The final time her mum was in hospital she knew she wanted to get home, the family wanted her home and Emma thinks they were supported well in getting her home. There was a delay in the discharge due to there not being a care package in place for her mum but they did manage to get her home. “When she finally came home we knew that she was going to die. I was grateful that I was here with her. I wanted to be here with her. I wanted it to be peaceful at home. It was just me and her at the end. I get a lot of peace from the fact that I was able to care for her. She was able to say quite a lot of stuff to me that she wanted to say, and me to her. She came home on Thursday and died on Tuesday.”

“On Friday, she was quite distressed, the palliative care nurse came. Mum was transitioned onto a syringe driver. It was quite easy and quick, and the palliative care nurse was reassuring to Mum. Mum was panicking, thinking all sorts of things like, ‘What if I don't go to heaven’ and ‘What if my dad wasn't there?’ It was just a lot of fear. However, the palliative care nurse was very good, reassuring her and was quite a calming influence. So, Mum was peaceful for the last few days.”

There were some aspects of that time that Emma would like to have changed such as the initial diagnosis, the hospital admission process and trips to A&E. “When she got that diagnosis, she was placed under a team, but I still had to take her in my car down to the hospital sit in A&E with her all night. There were times when I had to stay with her and fight to get her the proper medication in hospital. That was very distressing for her and me because she was in extreme pain. I would change those things. For somebody so unwell to have to go back through that process, it's pretty gruelling.”

The Bracken Trust Cancer Support Centre is supporting Emma as to where she can access services. She is currently on an emotional well-being course which she is benefiting greatly from. “It's an amazing opportunity to share your experiences with others and get some emotional support. I'm up and down. Sometimes I'm really upset and sometimes I feel like I haven't had a chance to miss my mum yet because there's been so much to do I just want that bit of time to miss her.”

“The support from the Bracken trust will be good. When my dad died, I didn't have access to any support. He had a brain tumour. That was a huge shock diagnosis, out of the blue. In retrospect, it might have been good for me to have access to it. I was so busy with the practical stuff and helping my mum that I don't think I gave his death the time that it needed. I'm grieving both now. I'm here, I'm in their house and collecting those memories and those things and processing those bits and bobs.”

Awareness and openness about death is an important topic to discuss and Emma believes that it should be talked about more. “After my dad died, I read a lot about what happens to the body and about the dying process. I had been very sheltered from people dying and death. My dad dying and experiencing that, for the first time was a lot to process. I did a lot of reading and finding out about it, which helped me understand. I've been following a few people on social media like hospice nurses, who do podcasts about the dying process and what changes happen in their body and why.”

To take away the fear of dying more education needs to be in place for people around death and the dying process. Knowing more about death helped her to be there with her mum, offering reassurance. “If you have limited time with a loved one you can make the most of that time and have the kind of conversations you want to with that person, reassuring them and letting them know why certain things are happening. I believe that fear is what sometimes prevents people from having a good death and prevents their loved ones from coping better with the loss.”

What mattered most for her mum, she believes, was to be heard. “It mattered to her that her wishes were heard and met. That she was home and that she had the medication she needed. I think she'd want to be remembered as somebody who cared about others. She was an active listening Samaritan in her retirement. I think she would want to be remembered as somebody who was very empathetic and cared about other people. She was a deep thinker and a very calm and balanced person.”

For now, Emma is sorting through her parent's house, it’s a bittersweet process. “I am finding all these funny little things and memories and all kinds of things that she'd kept. My mum had quite severe OCD so she's kept some funny, funny things and random things. At times, it makes me laugh and I just talk to her as I go. Sometimes I really laugh about things, you know? Other times it just hits me and I can't actually believe she's not here. It's a mixture of emotions.”

Click here to watch filmed interviews

A collaborative creative project

Read more stories

The Bracken Trust