On our return home Alfie insisted on still going to work. He wanted life to go on as normal as possible. I seemed to spend my days either being ok or doing the vacuuming in floods of tears!
Alfie started to become quite unwell... He seemed to be slowing down a lot, struggling. Bespoke to our GP and they arranged a McMillan nurse to come out and see us... She was the absolute best, I really don't know what we would have done without her... She became Alfie's confidante. I know he told her his fears, he didn't want to burden me with them. Secretly I wanted him to confide in me, but I'm not sure I would have done him any good, he would have spent more time comforting me than me helping him. So I was ok with him telling his mac nurse, she was lovely and she knew just what to say to him and at what time to say it.
It all sounds a bit doom and gloom and it really wasn't like that al the way through. Alfie still managed to be really upbeat and the life and soul of the party. He was and still is one of the bravest men I have ever known.
Just when you think nothing else can go wrong... Right in the middle of all this my dad became unwell. I was very close to my father, adored him. After tests we found out dad had cancer too. His cancer was of the bile duct. I'd never heard of it before. His cancer was terminal. I was devastated. Not only was my husband dying I was going to loose my dad too. Life seemed very cruel at that time.
Alfie got worse and we started to visit St Mary's Hospice in Birmingham. He didn't actually stay over night at that time, but he saw doctors there who made sure he had his scans etc. We were told that the cancer had invaded his liver. He started to get more pain and his medication was altered. He had to stop working...he didn't want to, but had no choice really. Besides he could no longer drive safely.
We had told the kids that daddy was poorly. That was one of the hardest things I have ever had to do. How much do you tell an 8, 5 and 2 yr old? How much do they really understand? It was so hard to do and we had to approach if differently with each one. I think being the eldest, my son understood a lot more than the girls... He still to this day can't talk about that time when daddy was poorly.
Alfie told me that he didn't want to die at home, he didn't want the kids to see him when he was very poorly, and didn't want them to think of mommy and daddy's bedroom as the place he died. He wanted them to still be able to come to me in that room for comfort, hugs, chats... And not to be the last place they saw daddy. He said he would know when he needed to go into the hospice, but he didn't think it would be too long off. We both cried that day. It was the first time I had seen him let go since this whole nightmare began.
I knew he was becoming very poorly, his medication had increased so much and he was still having break through pain even with the oramorph to top up. He slept much more. I would sit down stair, we had an open plan house and I would leave the bedroom door open. I could hear him breathing from downstairs, and sometimes he would slow right down, I would sit terrified holding my breath until he started up again. I felt like we were living on a knife edge and despite the family support, I had never felt so lonely in my life.
