Lesley's story

Lesley had been cancer-free for 25 years, but in 2011 secondary tumours in her liver and abdomen meant she was given just months to live.  She explains how the Rennie Grove nurses work with all her other healthcare providers to keep her pain-free and as active as possible four years on…

“I’m 66 now but I was only 41 when I was diagnosed with breast cancer.  I had a mastectomy, followed by radiotherapy and regular check ups… and then I just got on with my life.  I was working as a secretary in an accounts practice and my role developed over the years to include receptionist duties, office management, payroll – and I even learnt a bit about company law.

“I retired in 2011 and my husband, Christopher, and I went on holiday to the Scilly Isles in late September.  It was while we were away that I noticed my leg was swelling.  I had no pain, but when my tummy started swelling too, I thought I had better get it checked out.  Back in England, blood tests and CT scans confirmed the worst: the cancer had finally returned. 

“I’d been cancer-free all that time, and now all my post-retirement plans had to go out of the window.  This time my prognosis was not so good: on 23rd December 2011 I was given just a few months to live.  The cancer had spread to my liver and abdomen.

“It was a huge shock.  It takes a long time to sink in and you find yourself thinking: ‘this doesn’t happen to people like me’.  You start talking about where you want to be at the end and it feels like you’re talking about someone else.

“But I’m still here nearly four years later - and with the help of the Rennie Grove nurses, who work with my GP, cancer specialists and other hospice charities, we have got the cancer under control and I can live a fairly ‘normal’ life.  Scans show that my condition is stable at the moment and I’m concentrating on dealing with the symptoms rather than thinking about dying. 

“When the cancer returned, it made my body retain fluid, which caused the swelling in my stomach – and the resulting pain meant I couldn’t eat. Initially I had to have my stomach and chest drained in hospital, before a tube was fitted so Christopher could perform this task for me at home. 

“Now my regular chemotherapy keeps the tumours at bay and reduces the swelling.  Diuretics also help to flush out my system.  I don’t have any sickness but the treatment makes me very tired.  On a bad day I think ‘why am I bothering?’  It’s hard and I understand why some people give up.  But then on a good day I think ‘you silly fool!’  This may not be the retirement I wanted or expected – but I’m still here.  And I’m fortunate because I have Christopher and well co-ordinated care, available round-the-clock.  I feel confident that there’s always someone there.  To be on your own in this situation must be very hard – I don’t know how you’d cope.  Unless you’ve got back up it’s hard to stay positive.  In the middle of the night it’s easy to feel like you’re all alone – but I’ve got people I can turn to and knowing that the Rennie Grove nurses are there at the end of a phone, even in the small hours, is very reassuring.

“Because my condition is stable, the Hospice at Home nurses from Rennie Grove have reduced their visits to once a week now.  They spend time talking to me about how I’m feeling; they read the District Nurse’s notes; they review both my current medication and the ‘just in case’ drugs we have in the house should my condition deteriorate and I need pain relief quickly.  They’ve also helped me with practical issues such as the Disability Living Allowance (now Personal Independence Payment) and my blue badge.

“People with a prognosis like mine shouldn’t have to and don’t have to live or die in pain.  As a nation we need to invest in palliative care and support the hospice movement.  I am living proof that when care is well co-ordinated and of a high standard – you can live with cancer rather than waiting to die.”