Bill explained: “I started to get a pain in my shoulder. It had been there for a few weeks when I decided I should probably get it checked out. My GP diagnosed it as a frozen shoulder and sent me for physiotherapy. But this made the pain worse – and then I started to get pains in my lower back. I went back to my GP, who sent me to A&E for a scan.”
As a former paramedic himself with a 28-year career in the NHS, culminating in an Assistant Director post, alarm bells were ringing for Bill but he was expecting the scan to show up something like a slipped disc.
“It was a shock to see lesions on my spine. More scans over the next 10 days confirmed I had renal cancer. It had started with a tumour on my kidney but had already spread: the pain in my shoulder turned out to be a tumour too.”
At the point of diagnosis, Bill hadn’t heard of Rennie Grove, but his specialist nurse at the hospital’s cancer care unit – a former Rennie Grove nurse herself – recommended the service to him.
“I was a bit reluctant at first,” admits Bill, “I thought that if I engaged with people whose role was to look after people who are dying from cancer, I’d have to admit two things: I had cancer – and I was dying.
“But then I thought: if the help is available, why not? I’m notoriously bad at asking for help, but they have done such a good job of keeping me engaged. I’ve gone from someone with a ‘just leave me alone’ attitude to someone who actively welcomes their phone calls and visits. They were dealing with someone who knew the system (it’s true that healthcare professionals make the worst patients!) and I can honestly say I have never seen such efficient team work and behind the scenes work as I’ve seen in my cancer care nor felt such a strong sense of vocation as I’ve seen in the palliative care nurses.
“In terms of the healthcare professionals looking after me, what sets the Rennie Grove nurses apart is that, like a paramedic, they’re coming into my home and therefore from the very first visit they know more about me then anyone else involved in my care. In order for this type of care to be effective, it has to break down personal barriers and go beyond the boundaries of normal social interaction. Which means you have to trust the people who deliver it completely. The Rennie Grove nurses have mastered the perfect balance of being real, honest and up-front about your situation – but remembering also that life contains humour. I value that so much.”
As well as regular phone calls and visits to Bill to monitor his condition, alongside liaison with his palliative care consultant, the Rennie Grove nurses also supported Bill post-operation and through a critical episode when he thought he was going to die.
“About six weeks ago, I returned home from hospital around 4pm after a radiotherapy treatment. I’d been sick in the ambulance and by 5pm I felt really ill and had terrible pain in my hip and left leg. I couldn’t take my painkillers because I kept being sick. The only way I could endure the pain was to sit slumped sideways in my chair – but the pain was getting worse. I didn’t know how to cope – so I called Rennie Grove. One of the hospice at home nurses, Kim, said she would come straight away. She arrived 30 minutes later. I was in a terrible state. Kim was always telling me off for not asking for help enough – so she knew I must be in a pretty bad way. The second she arrived I felt such a huge relief: ‘help is here’ I thought, not dissimilar to how people feel when a paramedic arrives.
“Rennie Grove nurses arrange for ‘just in case’ medication to be available in patients’ homes, so that symptoms can be brought quickly under control should a patient’s condition deteriorate suddenly. I was no exception and Kim could access my just in case drugs immediately. But the morphine dose prescribed wasn’t sufficient so she rang the on-call doctor for permission to increase the dose. Because the Rennie Grove nurses are so well-known to the local GPs, this was quickly granted and Kim could administer the pain relief along with an anti-sickness injection. Within about 20 to 30 minutes I started to feel better, but Kim stayed with me for another two hours or so. She made me a cup of tea and some toast and she didn’t leave until she knew I was OK.
“For me that was massive; the pain had been unbearable and I felt that Kim had saved me – that was how it felt.
“Another example of how the nurses work together to treat you as a whole person rather than just a patient came soon after I was diagnosed and referred to Rennie Grove. The charity’s nurses worked with the hospital’s OT team to set up my front room with a bed, because a hip operation meant I couldn’t manage the stairs. It meant such a lot to me at that difficult time to be able to look out on the sunshine and the hills.
“I couldn’t have dealt with all this the way I’ve been able to if it hadn’t been for Rennie Grove. It is immensely reassuring to know they are at the end of the phone any time of the day or night.”
Bill sadly passed away in January 2017.