"At the Hospice, I was no longer Mark's carer, I was his wife"

Emily and Mark Taylor met on a blind date and were engaged after 6 months. They were happily married for 23 years with two beautiful children, Max and Lily. Their lives changed in 2018 when Mark was diagnosed with oesophageal cancer. Here, Emily tells us about her role as a carer and how the hospice supported her and her family as Mark reached the end of his life. 

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

Mark with Max and Lily when she was a baby

Mark was diagnosed with oesophageal cancer at the beginning of 2018. It was life changing but he was going to get better.

The Covid pandemic then hit and unfortunately during this time, I was diagnosed with breast cancer for the second time. Together with the children, Mark helped to care for me after my mastectomy and we were eventually told thankfully that my cancer had all been removed. It was a huge relief and we thought that we were both then on the road to recovery and would just get on with our lives as best we could.

Being referred to the Hospice

Unfortunately, 6 months later (and 2 years after Mark’s original diagnosis), we were given the devastating news that his cancer had come back in his lungs. Surgery was not an option so he had more chemotherapy. 

But 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.

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.

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.

Caring at Christmas

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. 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.

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.

The relief of finally getting to the Hospice

On 15 January 2022 we were getting Mark ready to go to the hospice but he was in so much pain it took four hours to get out of the house.

As soon as we walked through the doors of the hospice, I breathed a sigh of relief and said to myself, Thank God! We have finally got him here!

The team sat him down and gave him his medication. Everyone was so caring and kind.  Caroline, who was one of the nurses, spent hours with us. She was so calm and she put Mark at ease so quickly and so easily. She had such a wonderful demeanor about her.

Here was a man who was so against coming to the hospice. Then he was faced with this wonderful nurse. She sat and chatted with Mark and in the end, he was having a laugh.

I gave Caroline all the medication and I was trying to explain it but she held my hand and just said, “You do not have to worry about it anymore, that’s our job.”  The relief at hearing those words is indescribable.

It had all been getting so overwhelming. All I wanted was to stop him being in pain and it was down to me to give him the medication.

When Mark first arrived he didn’t want me to leave but after Caroline made him feel so relaxed, he was happy for me to go.

Mark looked at me and said, “It’s ok, go home and have a good night’s sleep.” That was massive.

The pressure it took off me was invaluable. I could actually go home and sleep, knowing Mark was safe and being cared for. It even relieved the pressure off the children as they could relax a little too knowing Dad was safe as they helped a lot with his care at home.

Being a wife and not a carer

The hospice gave us some quality time as a couple. He was the absolute love of my life but he was also my best friend and I could just be with him as his wife rather than his carer.

I was there every day and Max and Lily would come up to visit every afternoon. We actually had a nice time.  The hospice just has the most wonderful feel about it and everyone that works there are so lovely.

Emily, Max, Mark and Lily together on the ward

On the day Mark was due to come home, he was in so much pain that he couldn’t even get out of bed and into his wheelchair.

Dr Corinna came to see him and said, “let’s try again tomorrow.” The next day came and he was still so unwell and that’s when he said he wanted to stay at the hospice.

The nurses had arranged for us to be moved into the family room. It was just lovely. Mark was in there and a bed was put in for me and Lily and Max was on the sofa bed so we could all be together. It was important that the kids were there 24/7 so we could all be together and the nurses gave us that time.

We had our laptop with us and we would order pizza and watch a film. Mark was asleep all the time.  It was surreal but it felt ok, just like being at home together. 

Now I know what it means to have a good death

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.

The nurses had prepared us for everything that may happen so it wasn’t scary. We sat with Mark and said everything we wanted to say. 

The nurses were so careful and gentle with Mark.  The children saw that he wasn’t in pain. It was so dignified and he looked like he was just sleeping and he still looked so handsome.

Mark initially had very strong views about dying at home but he was so happy to stay at the hospice and we were so relieved the way it happened because we were so supported.

The children were able to be there throughout and it helped them both cope as they were on that journey with him. We are such a close family and it really worked for us.