Mike was a massive introvert. He absolutely hated socialising, but put him in a crowd and he was the centre of attention. He was an awesome dad, he would spend hours playing dollies with our daughter Lisee who was four at the time. He was also a huge gym bunny, my living room had three benches and twelve pairs of hand weights.
Everything happened so quickly. There had been no indication that there was anything wrong at all. He had just got a bit of a bad back and went to the doctor. A rheumatologist sent him straight down to A&E, and two days later we got a terminal diagnosis of renal cancer with metastatic bone cancer.
He was in hospital for three weeks and then came home but could not manage the pain and was rushed back. It was suggested whilst we were there – because he needed pain management – that the place to go might be the hospice.
The idea was to get his pain under control and for Mike to come home. Unfortunately that did not happen. He got worse very quickly and the pain was excruciating. So he lived at the Arthur Rank Hospice for the rest of his life, which was about three months.
Mike knew that no matter what time of day or night, there was always a doctor and a nurse available. He also had problems with anxiety, and the pain was significantly exacerbated by this. The nurses and health care assistants would do things that you just cannot get anywhere else: they talked him through relaxation and he had physiotherapy.
Even though he could not come home, we could visit him. Lisee could not visit him in the hospital, but at the hospice there were play rooms and toys. If daddy was tired we could take her to the room next door. He could go out into the garden and we got a little crazy golf set; he could swing a plastic golf club so she felt he was playing with her.
She actually said to me the other night: “Daddy liked living at the hospice, didn’t he mummy?” She remembers lots of experiences from that time which if he had been in a hospital we would not have had.
And for me – I could stay. For the last three weeks he was alive, I went home for two nights the whole time. I had a bed in his room and the guys would bring me breakfast. Before we arrived I was terrified he had to go into ‘a hospice’. You just do not visualise it as somewhere nice. I guess in the back of your mind you imagine it to be just a hospital where people go to die, or an old people’s home.
Emma, the lady on reception, was a joy to see every day, she always had kind words. There was always someone around, even if it was just me sticking my head around the door of the nurse’s office. The staff in the Bistro too, I got to know them. There was a wonderful risotto one day and I passed comment to the chef about how much I loved it. He saw me coming in a few weeks later and said “Oh, I have risotto on for you today.” Little things like that they would remember. I did not feel like a visitor. Everybody there – whether for a week, a month, or three months (like we were) – was made to feel part of a family.
It was not just the staff either. I met other people because we were there for such a long time. It was always in the kitchen making a cup of tea or sitting in the lounge. Everyone struck up conversation and you only get that because that is the environment the staff create. If they had made it feel clinical or cold, no one would talk to each other. We had the space to form those bonds and get that support.
The most important thing was a private space. We could have half a dozen guests, Mike’s cousin and two kids, his mum and dad, me, my mum and dad and our daughter. We could all fit in there and could close the door and not worry about being disruptive.
Having his own ensuite bathroom meant he got to do his own personal care for a lot longer than he otherwise would have. If he had to walk down the corridor to a bathroom or use shared facilities he would not have had the confidence to keep pushing himself for as long as he did. Even with his condition, he could still be himself for those extra few weeks.
The nurses would entertain Lisee if Mike was tired or so we could have time together. When Mother’s Day came round he was too ill to do anything. Lisee had gone off with the nurses, he had a sleep and I had a bit of time on my own, pulling myself together. They came back and brought this bunch of flowers and had helped Lisee make a card for me. I wept. It was the most thoughtful thing because he had not been able to do it and I had got irrationally upset about it.
Mike was a massive movie buff, loved Star Wars and Star Trek. He always wanted a big cinema experience and because he did not want to go out, he wanted it at home. When we bought the house we had the garage converted into a media room and he put all his fancy surround sound up with a big sub-woofer.
When he came into the hospice he was desperate for his movies and television. He got his Apple TV plugged in with all his shows, he could watch Netflix and we could watch Eurovision.
When Mike got ill, we did not know how long he had. I do not know if it was denial or optimism but he expected he would have a lot longer, and jokingly used to say “Well, I better make it to Eurovision.” We used to watch Eurovision every year, we would mark the songs at the end and work out who would win. It was actually on just over a week before he died, we arranged for my brother-in-law and sister to come down for it, and because they live in Surrey they stayed the night at the hospice. We were hoping to watch it in the lounge, but Mike was not well enough. With his Apple TV we were able to watch it in his room. We had a little Eurovision party, it was amazing!
Had he lived a little bit longer, the hospice were in the process of arranging to set up the Bistro with a big screen so we could have a Star Wars movie night. They were planning to wheel the bed through so he could lie there. You would not think you could possibly do all these things, they went way above and beyond. One of the nurses had ‘Star Wars Cluedo’ and brought it in to play with him when she finished her shift. I would have said we got special treatment, but talking to other people there, everybody got that, not just us.
The best word I can use to describe the hospice is safe: that is how it made us feel. I would say to someone who is going in at the end of their life that it will give you a chance, it will give the people looking after you a chance to spend time with you and for you to spend time with them, and take the pressure off.
I feel like we got the absolute most out of those last three months that we possibly could. I do not feel like I could have squeezed anything else in there, given his health.
During Mike’s last hour, Debbie, one of the healthcare assistants, sat with us as he left us, quietly in the corner, and did not intrude. I could hold his hand and talk to him. All I had to do was focus on him, on his last hour and last minutes. She was there ready to step in when the time came.
There were a lot of those minutes. Those tiny things – a nurse who stood with him for 15 minutes and did breathing exercises at night to help ease his pain, to help calm him. The ones who helped him with his personal care, as he cried because he could not bear the fact that he could not do it himself anymore, and everything hurt so much. They just made him feel better when I could not do that. There is not a financial value you can put on that.
It is not an experience I would ever choose to have, but I could not have chosen a better place to have it. Thank you to everybody: the doctors, nurses, healthcare assistants, house keepers, cleaners, maintenance guys, Bistro staff, chaplaincy service. I feel like I know every person there. The lady on reception, Sarah – even when I ring up now she says “Oh hello Kirsty, how are you? Are you going to come in and see us soon?”
I have no regrets about how that time went. There is nothing more anyone could have done given his health and the rapid onset of what happened to make the situation any better. I am and I will be eternally grateful for that. We got three months as a family. It made all the difference.
The hospice opened a new state of the art purpose-built facility in Shelford Bottom last year and celebrated their new home’s first birthday last month. For more information visit Arthur Rank Hospice