BLOG: My first impressions of hospice care

In a special blog series this Hospice Care Week, 37-year-old Victoria Hornby talks about her expectations and experience of St Catherine’s, where her beloved mum Elaine, aged only 55, spent her final weeks. In the first instalment, she shares their journey from diagnoses to hospital, and their first impressions of the hospice.

My mum was diagnosed with stage four rectal cancer in June 2018, after experiencing rapid weight loss, severe fatigue and excruciating, unbearable pain for a number of months. She had a bowel diversion and a stoma bag was fitted in the July in preparation for chemotherapy. The plan was to shrink the tumour in order for surgery to take place and remove as much of the cancer as possible – we had hope at this stage.

She had her first chemotherapy in the August, and sadly suffered a very rare side effect and developed a blood clot in her right leg. She had to have her leg amputated from above the knee, and two weeks later our worlds came crashing down when we were told the cancer was too aggressive, no more treatment could be offered and that she only had months to live.

It felt like such a lot had happened in such a short space of time, and I can’t tell you how overwhelmed and scared we were feeling. It completely turned our worlds upside down. We’d gone from her going through gruelling treatments and life-changing surgery, to being told that she now needed end-of-life care.

Mum never came out of hospital after the amputation, which we just weren’t expecting at all. Everything changed overnight and it was such a lot to deal with. After six months in hospital she started to deteriorate and we were told that she probably only had weeks left.

I can’t put into words how devastated and worried I was – how heartbroken we both were. And on top of that we had to think about an end-of-life care plan and decide where Mum would spend her final days, which is an enormous responsibility.

I was doing a lot of the hands-on care at that point, there was a lot of hustle and bustle at the hospital and neither Mum nor I were getting much rest. I was sleeping on the hospital chair next to Mum’s bed. She was feeling very lethargic, very anxious and distressed which was really upsetting to see, and she wasn’t eating very well at all. It was a really tough time.

At that stage we didn’t really know a lot about the hospice, in fact hardly anything at all and I wasn’t sure if it would be right for my mum – I mean she was only 55 years old.

When St Catherine’s was first mentioned to us, it created a lot of anxiety and fear to be honest, because I think there’s still a stigma around the word ‘hospice’ and what it means. People think you just go there to die and that they are these sombre, old fashioned style places, where you have to whisper and tiptoe around.

So I rang up St Catherine’s and asked if I could come and have a look around, to see what the environment was like and to meet the staff. I visited the very next day and I was surprised that it wasn’t all doom and gloom at all! The grounds were the first thing I came across and they were amazing; they were so beautiful and peaceful, and it just put me at ease walking through the gardens up to reception, which was also light, bright and airy.

The staff and volunteers on reception welcomed me with open arms. They were so friendly and personable and it instantly made me feel less worried and nervous. I didn’t know what to expect or see being shown around the hospice, but I started to get a feeling that this would be the better place for my mum to be at the end of her life. I realised that the nurses were able to spend time with patients and families, really getting to know them to understand what matters to them as individuals. It was a breath of fresh air and a more homely environment.

When Mum arrived at St Catherine’s, she really perked up. The atmosphere was so calming and her room was beautiful. Just being there made her feel better about herself. Her mental wellbeing noticeably improved, she was eating more. I wasn’t just able to visit whenever I wanted, I was able to stay overnight and this was such an important consideration for us both as we were going through this journey together, step by step, side by side. The medical care and support was exceptional as well.

It was so refreshing to be in this place where all of the pressure was taken away from me, where I no longer had to worry about all of her medication, her caring needs and remembering what she could and couldn’t do, because they had all of that under control, and they’re the experts. It meant we could just enjoy being together as mother and daughter, having normal conversations which weren’t all about cancer or medical treatments, having a laugh and just enjoying each other’s company again.

In her next blog, Victoria recalls how St Catherine’s became a ‘home from home’ for her and Elaine.

Victoria is sharing her experience this Hospice Care Week to help us raise awareness about what hospices stand for, what they’re really like, and the importance of our communities supporting independent local charities like St Catherine’s. If you would like to give a monthly donation from as little as £3 to help us be there for families like Victoria’s now and in the future, please click here.