Today marks the start of Hospice Care Week – a national campaign aimed at raising awareness of the many ways in which hospices care for and support people affected by life-shortening illnesses. Simon Ryan, from Ingol, tells how the support of the St Catherine’s Hospice family support team has made a significant difference to him and his wife at a difficult time in their lives, and how they feel prepared and reassured for him to receive hospice care in the future.
Simon Ryan, of Ingol, was planning to retire from the fire service in 18 months and travel the world with his wife Alison.
Now, the 62-year-old has been diagnosed with terminal cancer, and the couple is having to come to terms with a very different future, adapting their lives around hospital appointments and chemotherapy sessions.
Alison, a trustee for a national charity, is now Simon’s full time carer; the chemotherapy has affected his eyesight so he can no longer drive, meaning Alison has to take him to two or three hospital appointments a week for treatments and blood tests. And Simon’s condition and treatment mean they are unable to spend a night away from home.
But the pair have managed to gain some of their independence back thanks to St Catherine’s Hospice, which not only cares for people with life-shortening illnesses in their final weeks or days, but also supports patients and their families in a range of practical and emotional ways from the early stages of diagnosis.
Simon explains: “I was initially diagnosed with cancer in May 2016 and had a big operation then to remove two tumours in my gallbladder and bile duct. After a check-up scan at Preston hospital earlier this year, they found that I had a new tumour in my bile duct, and this time it’s non-operable as it’s too close to my organs.
“I’d initially been given a prognosis of six to 12 months; longer if I opted for chemotherapy. However the build-up of bile inside me meant I was given just a few weeks to live, but a drain was inserted to remove this. We were literally planning my funeral while I was in hospital, so it was a very difficult time.
“I felt like the rug had been pulled from under my feet. My life has completely changed; everything at present is ruled by the cancer.”
Once Simon was back home, he was referred to the family support team at St Catherine’s Hospice to discuss the different ways in which they could support him.
He adds: “My father died in a hospice and he received wonderful care, so when I was asked if I’d like to consider speaking with someone at St Catherine’s about potentially being cared for on their inpatient unit in the future, I said ‘absolutely’. It’s all about personalised care, specialising in pain management and making sure you’re comfortable, so I know it’s where I want to be in my final days if possible.
“It’s a great comfort to understand what the future might hold, because with cancer you don’t always get a definite answer, so it’s very reassuring to have that fall-back of hospice care. My wife Alison has since visited St Catherine’s and The Mill cafe in the hospice grounds, so she’s seen what a friendly and welcoming place it is and that’s really reassured her too.
“What has made a significant difference to our quality of life now though is the hospice’s befriending service.
“I’ve been paired up with a volunteer befriender who comes round up to once a week to spend a few hours with me; we chat and I’ve been helping her research her family history. It gives me something to do and does me good, but more importantly it enables Alison to get her independence back and live her life.
“When my befriender Shirley first came round, that was the first time in nine weeks that Alison had been able to leave the house and leave me.
“She doesn’t complain at all, but I don’t want to feel like a burden, and it makes me feel better knowing that she has that quality time to see her friends, go out for lunch, have her hair done – it’s just normal things like that, but we weren’t experiencing a normal life before, and that’s worth an awful lot.
“She can go out and not feel guilty or worry about me, and she’s even had a full day in London with her role as trustee for a major charity, because Shirley came in the morning and my neighbours and relatives came round in the afternoon.
“It’s been a lot for Alison to cope with, and I couldn’t have done any of it without her.”
Simon, who received the Queen’s Volunteer Reserves Medal in 2005 during his time with the Royal Navy, has served in Afghanistan, and as commanding officer of HMS Eaglet in Liverpool.
He joined Merseyside Fire Service as their Head of Strategic Support in 2007.
“In 2016 I was fit and healthy,” he says. “I wasn’t even feeling ill, but I was feeling more and more tired, and one day when I was having a shave I noticed that my eyes were slightly yellow.
“I went to the GP and he said he thought I had jaundice, but he suspected there was more to it than that. He sent me to A&E at Preston with a letter, and I ended up staying in hospital for five weeks – talk about a shock to the system.”
Extensive tests revealed the tumours and 13 hours of radical surgery followed, which involved removing the tumours and part of Simon’s bile duct, his gallbladder and appendix, and part of his liver to try and ensure the cancerous cells had all been removed.
Simon explains: “They told me the cancer was almost certainly going to come back and that there was only a 30 per cent survival rate at five years.
“Alison and I have made the most of the time but it ended up being only two years before the cancer returned. We love to travel and have been fortunate to have had a fabulous holiday in South Africa and travelled the mid-west of America. We even managed to see Rod Stewart in concert in Las Vegas; we had a great time and everything was going well.”
But then in April this year Simon began experiencing similar symptoms and tests confirmed the cancer had sadly returned.
His case wasn’t suitable for radiotherapy, but he was offered palliative chemotherapy to prolong his life. He is currently undergoing five months of treatment, which will conclude at the end of November.
He explains: “The chemotherapy is meant to stop the tumour from growing, it isn’t curable.
“However, I had a scan after four cycles which showed that the tumour has reduced in size by a third, which wasn’t expected at all. I don’t know if it will continue to shrink, but it’s giving me a reasonable period of extra life expectancy. They say I could have another 18 months.
“I’m looking forward to spending Christmas with Alison, my brother and our nieces and nephews once the chemo is over. I’ll then have scans every three months after that, and if the tumour grows, I’ll need more chemotherapy.
“If I can have 18 months of good life, I just want to make the most of it and spend it with Alison. You can do a lot with 18 months.
“I’m doing everything I can to look after myself. I’m not going to feel sorry for myself or let this destroy me. It would be incredibly difficult to cope on my own which is why I’m so grateful to have Alison by my side, and why we so appreciate what St Catherine’s and the NHS are doing to help us enjoy some normality again – it really does make all the difference.”
Simon’s befriender, Shirley Farrier, has been a volunteer with St Catherine’s since the scheme launched in 2011.
Shirley, from Leyland, says: “I’ve met some truly incredible people over the years.
“It’s wonderful getting to know people and hearing what they’ve done in their lives. It’s such a privilege to be welcomed in to their homes.”
Cheryl Scott, family support manager at St Catherine’s Hospice, adds: “At St Catherine’s we understand that the challenges which come with the diagnosis of a life-shortening illness can feel daunting, because not only are there medical issues to deal with, there are also social and practical concerns to overcome.
“The care of the hospice isn’t just about the inpatient unit – our support extends to people’s own homes and the wider community through the likes of our clinical nurse specialists who care for people at home; our monthly carers’ drop-in peer support group; bereavement counselling and remembrance opportunities at the hospice; and the befriending service which helps patients and their carers at home.
“The family support team is here to work together with patients and their loved ones so that social adjustments can be made and the best quality of life achieved.
“The theme of this year’s Hospice Care Week is ‘I Heart My Hospice’. We’re encouraging people to speak to their friends, relatives, neighbours and colleagues about their experience of hospices like St Catherine’s, and what they love about their local charity – from our specialised care and support, to our volunteering opportunities, our wonderful charity shops, amazing fund-raising events, and more.
To find out more about St Catherine’s Hospice and to show your support this Hospice Care Week, visit http://www.stcatherines.co.uk or find the charity on social media @stcatherinespre.