Lesley's Story
My daughter Alex was diagnosed with breast cancer in September 2019 when she was just 39 years old. It was a shock but after radiotherapy and surgery we got through it, however it was during the Covid pandemic so it was pretty scary. Alex was autistic and it became very obvious quite quickly that she couldn’t cope without me. I was with her by her side at times needing to hold her hand.
In February 2022 she started to feel unwell and dizzy. It was not till November after a referral they gave her an MRI. We received a phone call from a neurosurgeon who had picked up her scan asking to see Alex immediately. I tried not to panic but I could sense something wasn’t right. Alex had a CT scan that night and we were told the awful news that she had two brain tumours and three tumours on her spine. I remember her looking at me and saying, “I didn’t expect it to be this bad Mum.” She was admitted straight away and eight days later they operated, she spent the next four days in intensive care. They felt like the longest days of my life.
We were told after this that there was nothing more they could do and that they would keep her going for as long as possible. Where her tumours were in her brain meant that her mobility deteriorated very quickly and she was transferred to the rehab centre at Castle Hill. She spent Christmas in hospital, it was such a miserable time.
We were referred to Dove House through our wonderful Macmillian nurse. Alex was very anxious about coming to the hospice, but as soon as she arrived for respite she was put at ease. She instantly knew she was safe, and it was such a relief.
Alex was the type of person that everyone just loved and everyone at Dove House built such beautiful relationships with her as she spent the next two years accessing the incredible care they give. Alex spent numerous times at the hospice for respite and for symptom control. They never treated Alex like she was just a patient, they made her feel like a person and not just her illness. We felt seen and heard and that is why the hospice is a miracle place.
Alex never liked to be on her own and at the hospice she wasn’t. When I needed to take a break there was always someone to sit with her, even the doctors would take the time to sit with her and make her comfortable. Alex always had background music with her wherever she went, and so the hospice team ensured she had an Alexa in her room which was very important to her. I will never be able to thank Dove House enough.
One thing that stood out on our numerous visits to Dove House was that it was never just about Alex. They supported me as her parent and always took the time to take care of me, it was incredible. It was such a surprise when complementary therapy was also offered to me, the lovely team made me feel amazing and it made such a difference to my wellbeing while I was going through so much. I didn’t want to lose my daughter but the trust I had for the hospice helped me to cope so much better. It enabled me to rest for the first time in a very long time. I knew she was being looked after. The way everyone spoke to us with such kindness and understanding was exceptional.
They were our angels at the hospice, I never felt lonely, despite only having a small family, and they made sure I always had a cuppa in my hand, someone to talk to and usually a biscuit too!
We spent Christmas day and through till New Year at the hospice and despite my world feeling very sad it was actually quite comforting. We didn’t think she would make it through Christmas which was such a horrible thought, she loved Christmas so much and I was made to feel so incredibly welcome. I couldn’t have imagined anywhere else I would rather have been than by Alex’s side. I needed to be there.
I will never forget that the hospice’s chairman, Philip, came in and chatted with every family at the hospice on Christmas day. It was such a lovely and thoughtful act of kindness that has stuck with me. His words really helped me that day and I am grateful for that. I was made a Christmas dinner, and a doctor even brought in presents for Alex. Christmas at the hospice was not at all what I expected, it had a calmness about it and everyone was enjoying their own little Christmas in what little way they could given the circumstances.
The thoughtfulness that the whole hospice showed my daughter will live with me forever.
When Alex died the hospice team was wonderful. They went above and beyond for her when she was here and still after she had gone.