Jane Duthie was diagnosed with myeloma, a form of blood cancer, on Valentine’s Day 2020. The news came less than a year into married life and just days before her daughter’s 18th birthday. Both Jane and her daughter, Hannah, have accessed support at Barnsley Hospice since 2022, and want to share their story to help other families in similar situations.
“When I got diagnosed with myeloma on 14 February 2020, it was just a daze of appointments and scans – it felt like everyone wanted a piece of me. I was on my own when the doctor gave me my diagnosis at the hospital. They told me quite abruptly and then left the room.
“I had to isolate throughout the COVID-19 pandemic and my husband retired from work to look after me. I knew my cancer was incurable, but I opted to have stem cell treatment in the hopes that I would be in remission for 6 years. In the end, I was only in remission for 18 months – including 6 months of treatment where I was feeling really ill.
“When I was told I was no longer in remission, I felt so down and it was like I had gone through all of that for nothing. It was around this time that I read an article from someone who had shared their experience using The Orangery service at the hospice. It really made me consider whether the hospice could help me, so I asked my Macmillan nurse if they could put in a referral for me when I went to my next chemo appointment.”
At this point, Jane’s daughter Hannah, who was now training to be a nurse, initially found the mention of hospice care upsetting.
“When Mum first got diagnosed, I was okay and was being really practical about everything However, as soon as Mum said she was being referred to the hospice, I panicked. Even though I am a student nurse, I didn’t know much about the hospice. Like a lot of people, I just associated it with end of life care.
“As soon as I came to the hospice for the first time with Mum, my fears were alleviated straight away. Reading about other people’s experiences at the hospice also helped me understand a lot more about the different types of care they can provide – which made a massive difference.”
Jane and Hannah soon began attending group sessions in The Orangery, our support and wellbeing centre.
Jane said: “When I came to the hospice, I felt in control again. I’d had lots of negative experiences before coming here, but the hospice was different.
“Hannah and I have loads of fun and have made friends with other people in the group. It is so comforting to be able to share experiences and talk to people who understand. I don’t want people to feel sorry for me, and people often don’t know what to say when you tell them you have incurable cancer. But, when I am at the hospice, everyone gets it.
“Through attending groups in The Orangery, I was also able to access some advocacy support that helped me to rectify an ongoing problem I had been experiencing with my medication. It had been going on for almost four years, but thanks to the support the hospice helped me access, it was sorted within a couple of weeks.
“As a Mum, coming to the hospice also takes a lot of pressure off me, as I also know that Hannah is getting that support too. It gives her somewhere to go and talk to other people who understand what it is like from a carer’s point of view.”
Hannah said: “The Orangery service at the hospice has given me and Mum something to look forward to. We love coming to the groups – especially the ones near Christmas and Halloween! We do crafts and other activities, so it’s nice to have a distraction and do something fun together.”
Since Jane and Hannah both started accessing support at the hospice, they have also benefited from speaking to our specialist counselling team.
Jane said: “I never thought I would need counselling, but I was feeling so overwhelmed around the time I first came to the hospice. I was so grateful that they suggested that Hannah and I might benefit from counselling support. I only needed a few sessions, which was enough to release everything I feeling. It was so helpful.”
Jane and Hannah now want to use their experience to help others.
Hannah said: “I want to tell anyone who might be feeling how I was Mum first mentioned the word hospice to keep an open mind and not be scared. Having seen the difference it makes from both mine and Mum’s point of view, it’s an incredible place.
“I hope in the future I will be able to work at the hospice as a qualified nurse and help give other families the same support we have received.”
Jane added: “I want everyone to know that the hospice is a happy place. When the time comes, I want to die at the hospice as I know it will be very dignified for me and my family, and we will have all the support we need.”
