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Ella and Rosie’s story

25 April 2024

Mum told us: “I feel listened to; it’s so important.”

Sybille, more often known as Bille or Syb, but to Ella and Rosie known as Mum, was an “incredible woman”.

Sybille lived in Bournemouth, Australia, London, and settled in Birmingham. She went to art college, trained as a teacher and then worked with children with special educational needs and disabilities. Sybille later set up the charity Life Education West Midlands and volunteered for other charities too. She put her whole heart into being a mother, partner, sister, aunty, great aunty, cousin and friend, and in doing so became so much to so many.

Ella and Rosie kindly shared more about their mum and her journey with Birmingham Hospice.

Mum was a force to be reckoned with in the best possible way, she cared so passionately, so fervently about everything she did and all those in her life; the impact she had was profound.

Mum taught us to go out and make the most of it all, even when life isn’t always kind. In the ten years following her diagnosis, Mum’s strength shined so bright. Most of the time it was Mum keeping us all going. She would answer someone’s call and in the next moment be on their doorstep.

She volunteered for charities supporting families and the community. She always wanted a good chat or laugh or dance. For Mum, happiness was being surrounded by people and doing anything for anyone. Mum filled our lives with a joy like no other, she was the one who was always there for us, and we will always carry her with us.

Which is in part why we wanted to share our story; to honour our beautiful mother and thank those who cared for her – the wonder woman who always cared for everyone else.

Mum was cared for by Birmingham Hospice in 2021. Diagnosed with lung cancer in 2011, she received chemotherapy and radiotherapy and was monitored by doctors over the following years. However, her condition deteriorated in 2019, causing her lung to collapse.

A drug trial had promising results at first, but during the COVID-19 pandemic Mum began experiencing extreme pain in her face, neck, head and back and had to self-admit to A&E for help.

She was in hospital for over a month during the height of the pandemic in 2021 having test after test, it was awfully challenging with no visitors allowed. The exact cause of her pain was never discovered, and doctors told her it was most likely the cancer which was causing her severe pain.

After weeks of tests, the doctors were suddenly talking to Mum and us about end of life care and said they didn’t know how long Mum had left to live. It was utterly heartbreaking.

Mum went into hospital not knowing what was causing the pain, to then a month later, being told she needs end of life care; it was such a shock. The hospital then permitted one close family member to visit at a time.

We all discussed options for palliative care and after finding out more about Birmingham Hospice, decided to wait for a bed to become available in the Erdington Inpatient Unit (IPU).

With COVID-19 still a risk at the time, visiting numbers were initially limited to two people. But this meant that both of us could be together with Mum. We hadn’t been able to be together as a three since before she went into hospital, and so this meant everything to us.

Mum had a room of her own overlooking the garden. She lay peacefully with her eyes closed and told us – “I am thankful to be here.”

We were welcomed by Dr James and Jas, the IPU Sister. They sat down with us and were patient. They listened, cared for and helped Mum. Mum hadn’t felt listened to for so long.

In Mum’s first week at the hospice, Dr James came and explained that he thought it was micro cancer cells which were causing such severe pain – they are difficult to detect on scans.

To have somebody take the time to explain that to us was incredibly important. He then explained that they would be able to provide Mum with substantial pain management.

As a family we felt reassured that Mum would get 24/7 care in a safe space.

The hospice is such a kind environment, and the beautiful garden meant that we could spend time with Mum outside and the doors could be opened to the garden from her room.

She had sessions with the hospice’s physiotherapists to help with movement and she also had complementary therapy sessions.

The hospice counsellors also supported me (Ella) and my aunties; we had therapy sessions with them.

The support not only for Mum, but our whole family, was so important and incredibly helpful.

We could even bring our dog, Rudy, to visit Mum. It was amazing to see her smile when seeing him. We also could decorate Mum’s room with family pictures, plants and flowers.

The day our mum died, the hospice called us and took the time to explain how her breathing had changed. She had already been very unwell the same week, and so they thought Mum might pass away soon. We were so thankful to have the warning.

On the day she died, we had the doors open into the garden and we were listening to music and singing. Having the private space to pass peacefully meant the world.

We didn’t have to worry about what happened next and everyone at the hospice just looked after us. It was just a peaceful place to be.

We were so appreciative of everyone’s support at the hospice that day, and every day mum was in their care. We knew Mum was safe when we left, and the incredible staff would take care of our incredible Mum.

Mum died aged 62 on July 8, 2021, surrounded by her family. For us and Mum’s family to be by her side that day meant the world.

Mum had a room of her own overlooking the garden. She lay peacefully with her eyes closed and told us – “I am thankful to be here.”