Julie and her family
Having been diagnosed with bowel cancer in September 2020, Julie, 64, was told in January she had just three months to live. But now, following a successful surgery, she is free from cancer and looking forward to a bright future with her family. Our Hospice at Home team provide palliative care for Julie prior to her recovery – her daughter Hannah and partner Pete explain how our services helped them through the experience.
During the summer of 2018 Julie started to develop painful stomach symptoms, and thought she must have picked up a bug after flying out to meet Hannah and her now husband James who were travelling in Canada and South Africa. Back home, Julie went to see her GP.
“I was sent for a scans and blood tests, and also had a colonoscopy,” Julie says. “I was convinced I might have a stomach ulcer, but the fact that it was bowel cancer was missed. I was in pain and discomfort for a long time.”
When the first national COVID-19 lockdown hit in March 2020, Julie moved in with James and Hannah, who had just given birth to her first grandchild Ella.
“Hannah needed support, and during the early part of the lockdown I had a lot of energy,” she says. “During summer 2020 though I went downhill rapidly. I couldn’t eat anything and went completely off my food.”
In September 2020 Julie was finally diagnosed with bowel cancer, and told that she had a tumour the size of a grapefruit growing in her small bowel. She started immunotherapy treatment, but after just one course was taken into hospital due to the very painful side effects. She came off treatment in December.
She says: “Immunotherapy actually made things worse. In mid-January I received the awful news from Barnet Hospital that there was nothing more that could be done. My tumour had grown by 4cm and all they could offer me was palliative chemotherapy. I was told I had three months to live. It was quite a brutal conversation, but I just got on with it. I knew I had to fight this thing as best I could.”
At this point the family was referred to Rennie Grove. They believe ‘a lovely nurse at Chase Farm Hospital’ signposted them to the charity.
Julie says: “I remember myself and Hannah having a lot of phone calls with Rennie Grove, and think one of the nurses also came out to see us – but that time is partly a blur. We were able to talk through everything with the nurses, ask advice and discuss any concerns we had about what was happening. We both had so many questions, and they answered them all. It did give us peace of mind and made us feel that everything wasn’t just sitting on our shoulders.”
Julie’s son James managed to fund a private consultant at Princess Grace Hospital in London, and Julie underwent an operation in mid-February to remove the tumour. They were able to get all of it out, but discovered that it had actually grown from the large bowel into the small bowel. When the tumour was rolled out, it was 40cm long.
“Rennie Grove called us all the time asking if there was anything they could do to support us. We were offered so much help... if we asked for something it was usually delivered that same day."
Julie was in hospital for a month and was closely monitored, but couldn’t see anyone because of COVID. “I wouldn’t wish those weeks on anyone,” she says. “On top of everything else my best friend of 25 years, Kathie, died from COVID, whilst I was in hospital, and I also lost my sister Pam. This really impacted my mental health. I felt like I was going mad. Not only that, but your illness really impacts other people as well. Hannah really went through it. I think she thought she might never see me again. At that very difficult time, being able to talk to Rennie Grove made a big difference to all of us.”
Julie came home from hospital in mid-March, in time for Ella’s first birthday. She was living with Pete, as he has a downstairs bedroom. It was then that Rennie Grove’s support became absolutely essential to her being able to remain at home.
“Rennie Grove called us all the time asking if there was anything they could do to support us. We were offered so much help. A physio came out to the house several times, and the charity also delivered and collected various household aids for us – bath aids and toilet seats. If we asked for something it was usually delivered that same day. Having easy access to those things sounds a small thing but it made such a big difference to me.
“I knew that I could call Rennie Grove at any time, and they also came out to help with my dressings. I was having palliative chemotherapy at Mount Vernon Hospital, and also called Rennie Grove for advice on things like side effects. I knew I could offload to the nurses, which was a massive comfort – and my partner Pete also knew he could call for advice 24/7. We knew we weren’t on our own.
“I’m quite an independent person, but cancer knocks your confidence. I suddenly had no strength to climb stairs, and developed a fear of heights. The little things build up – but Rennie Grove takes the fear away. Rennie Grove also gave me my independence back. They were always there if I needed them.”
In August Julie received the wonderful news that she was clear of cancer. She will now have scans ever three months for a year, and every six months after this.
Julie says: “I decided to move house after 27 years to be closer to Hannah and Ella. It’s going to be a fresh start. My weight has also gone back up to 8st 10lb, and I’m excited about food again. I feel really good, very positive, and I’m looking to the future. I do get occasions when I worry about the cancer coming back, but I take things one day at a time.
“I also took part in Rennie Grove’s Three Peaks Challenge in September, completing the eight-mile course with Pete, Hannah, her husband James, Ella, and James’ mum Nicky. A few months before I had weighed six stone, and there I was walking miles over the Chiltern Hills. It was an amazing experience and I cried at the end. I couldn’t believe I’d done it.
“As for how Rennie Grove has helped me, I can’t thank them enough. It’s an absolutely amazing charity and I will be recommending them whenever I can. I’d also like to volunteer for the charity.”
“I’m very close to Mum. We spend all our time together, and even set up a business six years ago, renovating houses together.
“When she became ill her partner Pete was her main carer, but I was supporting wherever it was needed. We were fully isolating due to COVID and our daughter Ella wasn’t going to nursery, so when Rennie Grove became involved it gave me confidence that both Mum and I had someone to talk to and somewhere to turn to ask advice about her care. She had loads of questions that I couldn’t answer, but Rennie Grove could. It was such a comfort that Mum had someone unconnected to the family that she could turn to.
“Mum is quite stoic, and I know she wouldn’t want to break down in front of us, but she could be honest with the Rennie Grove nurses. Her independence is really important to her, and that’s what the support from the charity gave her. It made all the difference to us all to be able to care for Mum at home.
“When we were hearing loads of different medical opinions, we could speak to Rennie Grove for advice. It was so helpful having someone to call to discuss things with, and talk to about pain relief and side effects.
“The nurses are so friendly and caring, you never feel like you’re bothering someone. The NHS has been so stretched during COVID and you end up speaking with lots of different people. You only have to make one phone call to Rennie Grove.
“Mum is now living independently again, is doing really well and feeling very energetic. She still has blood clots on her lungs so she struggled slightly with the hills during the Three Peaks walk, but she loved taking part with the family.
“Without sounding cheesy, Rennie Grove gave me my mum back. Thanks to the charity she regained her independence and her personality. Rennie Grove helped us to bring her physical and mental strength back up. Everyone at the charity is brilliant and we’re so lucky to have had your support.”
“When Julie first came home from hospital she couldn’t walk far. We asked Rennie Grove if they could help with delivering a toilet aid, and it arrived the same day. Then when we needed one for upstairs the same thing happened. You can’t get better support than that.
“The charity also offered to help us to access a wheelchair, should we need one. Just knowing we had that practical support on hand was a comfort in itself.
"when you’re dealing with a life threatening scenario it’s nice to know that there are people there who have seen it all and done it, and can help you when you need it.”
“If I needed to speak with someone I knew one of the nurses was always there. Having a loved one at home so ill is a very difficult time for everyone. It’s not a scenario that happens every day. I ran a factory with 100 people and am used to dealing with difficult things, but when you’re dealing with a life threatening scenario it’s nice to know that there are people there who have seen it all and done it, and can help you when you need it.”
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