Brian, Edana’s partner of 30 years, was referred to Blythe House following his diagnosis in autumn 2021, with bowel, liver and lung cancer. A typically private and reserved man, Edana says she knew something was not right when Brian put off doing little jobs around the house – something he otherwise loved to do.
Then, one morning whilst having a hot drink in bed, Edana was totally stunned when she asked if Brian was OK, and he responded with ‘no, I don’t think I am.’
Edana, who lives in Hayfield, explained: ‘After we called the GP in August 2021, it all moved very quickly. Brian underwent numerous investigations including tests, MRI and CT scans at Stepping Hill Hospital, before he was told he had a tumour in his bowel, and that the cancer had spread to his liver and lungs. From there, he was referred to The Christie Hospital where he underwent a week of radiotherapy treatment followed by chemotherapy.
‘Brian was a very private person, and apart from the treatment to target the cancer, he refused all other help and support from medical professionals. He’d say “no, we’re OK; we can manage; we’re fine.” I of course respected his wishes.
‘After three months of chemotherapy treatment, Brian was told that it had not helped, so he was offered a different course of chemotherapy but unfortunately this did not work either. His doctor advised that there was no point going through more gruelling treatment if it was not working, so he prescribed chemotherapy tablets, but was very honest in saying he didn’t think they were going to do much.
‘Towards the end of June 2022, Brian became very poorly and I worried he had picked up an infection. I offered to call the doctor but Brian said no. In the end, I did have to ring because I was so worried about him. The doctor came and saw Brian, and said that if he didn’t go to hospital as soon as possible, he wouldn’t see the weekend! Brian was diagnosed with sepsis and pneumonia. Two weeks later, he came home but he was incredibly exhausted.
‘Following his stay in hospital, the nurse from our GP surgery came around to discuss different things, including completing a ReSPECT form, which would outline Brian’s preferences for care if and when he might not have been able to make decisions later.
‘After this, we first received a call from Blythe House and the kind woman on the phone chatted through all the care and support that the hospice offered. Again, Brian was adamant he didn’t need any extra help and so we politely declined, but at that point I felt so much better that contact had been made. Up until then I felt alone and that all Brian’s medical care and treatment was on my shoulders, but I felt so much better knowing that the hospice was there, and could help if we needed it.
‘Miriam and Angela from the hospice’s occupational therapy and physiotherapy team did call as a result of Brian being referred through the NHS occupational therapy service. They came to the house and arranged for a rail to be fitted in our bathroom so that Brian could still safely have a shower, as it involved climbing into the bath.
‘On the 20th September, Brian had an appointment at Arden House in New Mills to have his bloods taken, but he wasn’t fit to go; he could hardly walk, but he was adamant he wanted to be there. The nurse took one look at him and couldn’t believe he had made it into the surgery. They couldn’t take his bloods, but arranged for a doctor to visit us at home. There were several more unsuccessful attempts to retrieve a blood sample until our local district nurses were able to.
‘Tina Wild, advanced nurse practitioner at Sett Valley Medical Centre in New Mills, came to visit us to talk through everything. She referred Brian to the district nurses and asked them to order a hospital bed; they started to come around to care for Brian. Tina also put us back in touch with Blythe House; Louise Furmston, Community Engagement Lead Nurse, called us. Brian said, “we’re alright, we don’t need any support,” but I wasn’t; I could feel that I was draining trying to care for Brian on my own. Caring for someone you love who’s going through something so awful, it really is draining.
‘Louise referred us to the Hospice at Home service, so healthcare assistants (HCAs) started to come for an hour per day to give me time to have a rest, sit in the garden or go on a walk. The relief was overwhelming; I felt like I’d got back-up. It felt very strange at first; allowing strangers into our home, but over time it was like opening the door to a friend. Every single HCA was so lovely; they asked how I was and cared for me, as well as Brian.
‘In the room we’d moved Brian’s bed into, there was shelving displaying Brian’s Play Mobil train sets. The trains were a real conversation starter with the HCAs, as I could hear each one chatting and asking about them; this really helped Brian to open up to them and I could tell the difference in his voice; speaking to different people other than me, was doing him the world of good.
‘In October 2022 during one of her visits, Julie, one of the HCAs, recognised how poorly Brian was and asked how I was coping. She spoke to the office team and asked for visits to be stepped up, which they were to two hours per day, and some overnight sits too. It was so wonderful that the team was able to do this so quickly. I wasn’t so sure about the night visits at first, but the team reassured me and said “just give it a go.” Straight away, on the first visit, I felt at ease. I went to bed and was able to sleep soundly. I heard Brian cry out in the night but I knew Gary was there and I felt comforted. I had a really good sleep, and in the morning, I felt so well rested. It hit home then that I’d been doing this all day, and all night for so long.
‘On Monday 7th November, Brian was becoming very distressed and he was obviously frightened. I called the district nurse who came to check the medication in his syringe driver. I didn’t know if I was panicking but I knew I’d made the right decision. The district nurse kindly told me that Brian was really, very poorly.
‘Gary was with us overnight again and he was so good and caring. He told me to go and get in bed, and to have a rest. Gary woke me up at 4am to tell me that Brian’s breathing had changed, and so I was able to be with him at the end. I can’t speak highly enough of Gary’s care and support afterwards. He stayed with me and made a cup of tea whilst I sat with Brian. He kept checking to see if I was OK or if there was anything I’d like him to do.
‘Since Brian’s death I have accessed counselling and bereavement support at the hospice which I found very, very helpful.
‘All through Brian’s illness he didn’t want anyone to know, and he didn’t want any extra care and support. I of course respected his wishes as much as I could but my only regret is that I wish we’d had support from the hospice earlier. Everyone we met was fabulous; so kind, supportive and caring. Thank you doesn’t come close; I have no words for how grateful I am.’
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