My name is Sue and this is the story about my brother Tony Kenny who died at St Gemma’s in March 2022. He was 60.

My brother Tony was really good company and well-liked by everyone he knew. He was funny, a bit of a daredevil, and never took himself too seriously. A few years ago, before he became poorly he raised money for Alzheimer’s Society by taking part in a memory walk and doing a skydive.

Like siblings do, there were times when we were busy with our own lives so didn’t see each other much but during the last few years we have been very close and spent lots of time together. We lost our mum when we were quite young, she actually died in St Gemma’s in 1989. Our dad also had a stay at St Gemma’s for symptom management in 1994, and I hadn’t been back since then. A lot has changed at the Hospice over the last 30 years!

My brother Tony first started getting ill in December 2019 when he had a serious heart attack. He had two stents fitted then and later had a pacemaker/defibrillator put in place. The cardiologist diagnosed him with heart failure, but said that his heart was reasonably stable.

At the beginning of 2020, he spent several weeks in hospital; we believed he contracted Covid during that time, he was very poorly. Thankfully he recovered and came back home.

In April 2020, Tony was referred to the transplant unit in Newcastle for a possible heart transplant but to our great surprise the surgeon said his heart was not in a bad enough condition to have a transplant at that stage.

Later in 2020, Tony was very unwell again. He had an autoimmune response called membranous nephropathy where the immune system mistakenly attacks healthy cells in the kidneys and as a result his kidneys failed and he had to commence dialysis three times per week. At one point he was taken into intensive care, that was a very scary time for us all.

With three separate diagnoses of heart failure, kidney failure and rheumatoid arthritis life was very tough for Tony but he dealt with everything that was thrown at him. In summer 2021 Tony was referred to St Gemma’s for palliative care. We were allocated a community nurse, Lizzie, who would come round to administer pain relief and help Tony manage his symptoms. Lynne, Tony’s wife and my sister-in-law could also call Lizzie when she had questions or needed advice. It was a real lifeline for her, knowing that their community nurse was just at the end of the phone. We also benefitted from the expertise of St Gemma’s palliative care doctor, Dr Ward. He helped to liaise with the care team at St James’s hospital.

Tony was very unwell in his last year of life. He was getting severe abdominal pain, and was also being very sick. There were days when his wife Lynne struggled to get him to and from the dialysis unit because he was in so much pain. It was very difficult to see him that way.

Lynne got in touch with Lizzie from St Gemma’s as Tony was adamant he didn’t want to die in hospital… the team pulled out the stops to admit him.

It was tough when he was so ill to see any positivity, but looking back now, there were some good times. The four of us spent time together in the Yorkshire Dales where we have a holiday lodge and when Tony turned 60 in October 2021 we managed to go out for a lovely family lunch. I found a photo the other day of the party which made me smile. We also had a nice time for his last Christmas. Tony and Lynne were meant to come around to our house but my husband Tom got Covid, so we delayed it until New Year’s Day; that was a lovely day and we were very grateful to have that time together.

By March 2022, his stomach pains and sickness had reached crisis point. He was taken to A&E by ambulance early morning and Lynne and I were called to the hospital. He was in so much agony and we were fearful that he would die there in the bay at St James’s. The doctors sent him for an abdominal scan, but they warned us that he was in such a bad condition he may not survive the scan as his organs were shutting down. We were told he probably had hours rather than days.

Lynne got in touch with Lizzie from St Gemma’s as Tony was adamant he didn’t want to die in hospital. The consultant on the ward also contacted St Gemma’s to see if he could be admitted. There weren’t meant to be any new admissions to the In-Patient Unit that weekend, but he desperately needed pain relief, so the team pulled out the stops to admit him.

I remember that ambulance journey to St Gemma’s, with the blue lights flashing, Lynne with him as he screamed in pain and us following in the car. Thankfully he made it there.

As soon as we arrived, the team were fabulous with us. We were admitted to a private room on the Moors ward, and Tony was made a comfortable as possible. They fitted him with a syringe driver and he finally had some relief from the terrible pain he’d been suffering.

In those last few hours we finally found a sense of calm, after the horrors of the past few days. Tony was going, but it was far more peaceful than dying in A&E or an ambulance. We talked a bit about the holidays we’d had; Tom and I used to go away with Tony and Lynne after I retired. We’d had some good trips on a narrowboat, to Northumberland, Alicante and also a lovely holiday to Portugal.

I will be eternally grateful to St Gemma’s for the help and support they gave to my family: to my mum and dad all those years ago, and for Tony as well. The support from the Hospice didn’t stop once Tony died either – both my sister-in-law and I have received counselling from St Gemma’s bereavement service.