Sam’s story

Despite having worked as a nurse for 20 years, Sam was anxious about staying at the hospice and thought to herself, ‘If I go in, does that mean I’m going to die?’.

Sam and Monty
In her story, Sam talks about her condition and how her perception of hospice care has changed since her stay.

“I was diagnosed with a rare form of ependymoma in 2003.”

I’ve got a spinal cord tumour in my lumbar region which is very slow growing. I have a good quality of life, but I’ve always had a lot of back pain because as it grows it presses on my nerves.

Over the last two decades I’ve had a number of operations to remove the tumour, but surgeons have never been able to get rid of it entirely as part of it is wrapped around my nerves. When I was told in 2019 that any further surgery would be too risky, one of my only options to shrink the tumour was a course of chemotherapy. Unfortunately, it didn’t work and I found out the tumour had grown through my spine and into the surrounding tissue. I was told by the consultant that there was nothing more they could do, apart from help me manage my pain.

“I was independent in my wheelchair until I had the accident.”

The pain was getting bad again when I had an accident at home in March 2021. Somehow my leg slipped when I was transferring from the toilet back to my wheelchair. I heard a pop, and the pain was so bad I couldn’t move. I was rushed to hospital where I was told the damage to my back was so severe that it would take 12 weeks to heal. I’d been independent in my wheelchair up until this point, so when I was told I wouldn’t be able to manage at home and I’d need to stay in hospital it was a real blow.

Fortunately, there were St Barnabas doctors in the hospital who were fantastic at helping manage the pain that I was in. But, it was a very stressful first two weeks as I was on a noisy elderly ward and I didn’t feel the atmosphere was conducive to my healing.

“Coming to St Barnabas was a difficult decision.”

When one of the St Barnabas doctors suggested that I could continue my recovery in a private room at the hospice, I didn’t want to go. Even though I used to work as a nurse and I know that hospices aren’t just for people at the end of life, I was scared and I thought to myself, ‘if I go in, does that mean I’m going to die?’. I was assured by the doctor that I’d be just be going in for pain management and physiotherapy until I felt well enough to go home. It was a difficult decision to make, but I knew St Barnabas would be able to help me with my pain better than anywhere else.

“It was like a weight had been lifted.”

I was anxious before I arrived, but the minute I came through the doors it was like a weight had been lifted off my shoulders. The atmosphere was completely different to the hospital and immediately it made me feel better. My room was bright and airy and it felt so calm.

At the hospital I hadn’t had any visitors for two weeks because of Covid restrictions, so when I was told that my friends and family could come and see me at the hospice that helped me so much mentally. Even my little dog, Monty, has visited me – he loves it so much that he doesn’t want to leave!

I suppose I’m living proof that St Barnabas is not just a place where people go to die! Thanks to everyone here I will be going home much stronger and more positive than when I arrived.

“They’ve helped me in every single way – nothing is too much trouble.”

When I first came to St Barnabas I couldn’t do anything for myself as I was in so much pain. Not only have the team helped me with my pain management, but the physiotherapists are working with me on my goal to gain my independence back. With their daily support, I’m now more confident getting in and out of my wheelchair, on and off the toilet and in and out of the shower. We’ve also practiced getting in and out the car, ready for when I go home.

The emotional support has been just as important and I think one of the biggest things the team has helped me come to terms with is that it’s ok to accept help. Before the accident I had been very independent, so I had convinced myself that I wouldn’t need any support when I went home. But, what they’ve shown me is that if I accept help then I’ll get better quicker. This is a big lesson for me, as I’ve had setbacks in the past where I’ve overdone things and ended up in agony.

“I’m looking forward to going home.”

I’m feeling stronger and my injury pain is so much better, so the last thing I want is another fall. To reduce the risk of it happening again, the hospice’s Occupational Therapist has visited my flat and she’s helping to make my bathroom safer and more accessible for when I go home. It’s been a difficult few months since the accident and I can’t wait to go home, but if there was ever a time that I needed to stay at the hospice again, I wouldn’t hesitate.