How the Community team helped us avoid a crisis at Christmas

Mark Taylor and his wife Emily were together for 25 years before his death on Valentines Day in 2022. Mark was supported by the Community Team before spending the last few weeks of his life on the Ward. Emily explains how the community team supported Mark so he could stay at home for as long as possible.

Mark was the most amazing dad and husband. We were his world and he was ours. We were together 25 years.

Mark was diagnosed with oesophageal cancer at the beginning of 2018. He had chemotherapy, radiotherapy and major surgery called an Ivor Lewis, which involved removing his oesophagus and three quarters of his stomach.  It was life changing but it was successful and he was going to get better.

Mark with Max and Lily when they were young

The cancer becomes terminal

In December 2021 a lump came up on Mark’s arm. Two weeks before Christmas, Mark had a scan and we found out the cancer had now spread to his muscles and his bones. That was when his oncologist told him he was now terminal and she was going to refer him to Saint Francis Hospice. Those words were terrifying.

We looked at each other - we thought if you are referred to Saint Francis Hospice that it was a place you were sent to die, little did we know how wrong we were. We had muddled on for four years and now it felt out of our control and he was not going to get better.

Mark was adamant he was not going to the hospice, he was going to stay at home. A few days later, we got a call from the hospice and the nurse was so lovely. A doctor and a nurse came around to our home and they explained what they did and why they were there. The nurse said she would call in once a week and that put Mark at ease. For a few weeks she would come every week and she put various measures in place for us to manage Mark’s symptoms at home.

Managing Mark's pain

Seeing someone you love in pain is the worst thing ever. Mark was in so much pain and I was getting overwhelmed with his pain relief medication. He was on a concoction of different tablets and liquid morphine. It got to a stage where I had to set an alarm as he needed morphine every two hours.

Mark was very unwell on Christmas Day. It was just the four of us and we had as nice a day as possible and he managed a bit of dinner.  On Boxing Day, Mark ran out of medication and I was panicking because he was in so much pain, he was delirious. He could not even move and his whole body hurt.  

I rang the hospice and they got the prescription he needed and told me what chemist was open. It meant so much to have someone I could call and say, “I don’t know what to do.”

Having that back up from Saint Francis Hospice, helped me so much. When the nurse came to see Mark, she asked if he would come to the hospice for pain management but he refused. He said, “If I go in there, I will not come out.  I am not ready yet.”  She sat with him and explained that the hospice was not a place to just go and die, it was a place of respite and to manage pain and symptoms for patients too.  The plan for him was to go in for pain management and to then come home.

Being cared for on the ward

The next day, it got to the stage where Mark’s pain was so bad. Mark said, “I have to go in there. I cannot do this anymore.”

I rang the hospice and two days later, one of the community team rang and said there was a bed for Mark on the ward. He was on the ward for four weeks and he was as comfortable as he could be. 

Those last few days will always be so important to us. We had watched Mark in excruciating pain for so long. He was monitored so closely and we knew he was pain free. When someone is in pain, you can see it in their face and during those last few days, I could see he was peaceful.

When the time came, we obviously did not want it to happen but we knew he was not in pain anymore.

Our experience of Saint Francis Hospice is overwhelmingly positive. Mark felt so strongly that if people were unfortunate enough to be told they had a terminal illness, that they should feel relief at being referred to the hospice, without any fear.