Cathy’s story

"It only takes a second for your life to change entirely. Before my husband Jim was diagnosed with an incurable brain tumour he was an avid motorcyclist and loved to travel, and was very much looking forward to all the new places and experiences he had planned for his retirement."
Man and woman smiling to camera

“In his working life, he was passionate about nurturing a love of literature and reading in the younger generation and had spent the latter part of his career building a successful children’s publishing company. But the day he collapsed without warning at work, all the plans we had been making for what should have been our golden years together changed in an instant.”

“Suddenly we were faced with the words ‘palliative’ and ‘hospice’, and I must admit the first time I heard those terms I had no idea what they meant. It was our GP who first said to us about Jim being referred to the Hospice soon after he was diagnosed, and at first we were quite resistant to the idea, thinking we could manage on our own. But we talked it through and decided it would be a good idea for someone from St Clare to come out to us at home just for a chat, as really we were open to any advice we could get.”

“Erica, one of St Clare’s Clinical Nurse Specialists in Palliative Care, came out to see us, and was full of expert advice, helping us to prepare for what was to come. At the time, Jim was having ongoing chemotherapy and his initial prognosis was 12 to 22 months, but in the end he survived for four and a half years.”

“After finishing his chemotherapy, we had two years free of treatment, and we were able to live a very normal life. It was very much Jim’s philosophy that he was in the business of living his life, and not dying. He always said right up until shortly before he died that he was very lucky, which is hard to understand, but we both felt that.”

“During most of that time we didn’t have any contact with the Hospice, and it wasn’t until January this year when we were told Jim’s tumour was progressing rapidly and his health started to deteriorate, that he was re-referred.”

“It was then we met Irene, another of St Clare’s Clinical Nurse Specialists, who was wonderful right from the start. Jim was never one to shy away from the truth. He always wanted to know and we were able to talk to Irene very frankly. Jim was never afraid to ask questions and always confronted things head on, so with Irene’s help we learnt the language of dying and approaching death without fear.”

“She suggested different medication to help ease some of Jim’s symptoms and anticipated his needs so he was never without the next bit of medication or apparatus. St Clare also arranged for us to meet one of their occupational therapists, who gave Jim tips on safely getting around the cottage as by then he was unsteady on his feet but still extremely determined to remain as independent as he could. Whatever he needed it was taken care of and it was just such a relief to know there was this safety net under us.”

“But, it wasn’t just the expert medical and practical advice that we received from the Hospice team, as the other wonderful thing about them was that they hugged us. That’s the difference between medical professionals and the St Clare staff. They look after you emotionally as well as physically.”

“Best of all were the chats we had. I was able to have the sorts of conversations I couldn’t have with anyone else and they gave me a safe place to talk openly about my anxieties for Jim. ”

“Jim was determined he wanted to stay at home when the time came and I was anxious as to whether I could give him the care he needed. But I was assured that help was only ever a phone call away. On one occasion, Jim’s syringe driver, which delivered his medication, started beeping and I didn’t know what to do. So, I simply called the 24-hour advice line at 9 o’clock at night and one of the nurses talked me through how to reset it. There was no red tape, or being passed from pillar to post. St Clare was just there.”

“Jim was also able to attend Day Therapy at the Hospice, which he found incredibly rewarding as he was able to talk to other people facing a similar situation. In 2013, he had started writing a blog about living with a life-limiting illness, sharing his experience to help others who may find themselves in the same position. Attending Day Therapy was another opportunity for him to help others in a positive way by sharing thoughts and fears about facing an unknown future.”

“It also gave me a few hours where I could do something for myself knowing that Jim was in safe hands. Even if it was just walking the dogs, or meeting a friend for coffee, I was able to do things without worrying about being out of the house, or that Jim was on his own.”

“St Clare gave me the confidence to know that all the support was there for me to care for Jim, and in the end I had no fear of keeping him at home, where he wanted to be. And when the Hospice at Home team started to visit us, they were just fantastic. I thought they were just here to help Jim, but they were there for all of us.”

“Jim died very peacefully with me and our three children with him, all sitting on the bed together. He was comfortable, peaceful and safe, with his family around him, just as it should be. But I’m almost certain that had St Clare not been part of our journey, guiding us, advising us and caring for us all, with a hug at the end of each visit, it might have been a very different experience.”

“Which is why, now that Jim’s gone, it’s my wish to fund St Clare’s Hospice at Home team for a week so another person can benefit from the expert care and support that Jim and our family received. During his life, Jim was passionate about supporting good causes and helping others, organising sponsored walks for The Brain Tumour Charity and helping to raise thousands of pounds to buy an additional neurosurgical microscope for Addenbrooke’s Hospital where he underwent treatment. It’s the legacy he has left, and one I will continue in his memory.”

– Cathy

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