Where do I begin?
In July 2013 my wife Mary was diagnosed with stage four ovarian cancer in Altnagelvin Hospital, we were told that she would receive treatment but this would not cure her but only help to prolong her life and give her a better quality of life.
After that it was a round of doctor and hospital visits. One day we received a phone call asking if the hospice nurse could call out to visit Mary at home, we said yes and arranged a day and a time. This call unsettled us a bit. The mention of the word hospice seemed to fill us with fear and foreboding.
When Mary was well and at herself and we passed the hospice we would say things like: ‘I hope none of us ever has to end up in there.’ When we talked about it we said things like, we don’t need the hospice. Mary said “I’m not going into the hospice, when my time comes I’m going to be at home.”
But we decided to meet the nurse and talk and just leave it at that. When the nurse from the hospice called out her opinion was that Mary was doing quite well and at present did not need homecare. She asked Mary if she would be interested in attending the hospice day unit once a week for pampering sessions. She basically explained you would come in the morning and meet a group of women, start off with tea and scones a wee chat among themselves then maybe get your hair and your nails done. After that have your dinner a three course meal. There was a range of activities to do and you would not be forced into trying anything you didn’t want to do. Mary said she would think about it and the nurse left us with contact details.
Then things took a change for the worse and Mary was admitted to hospital for emergency surgery for a blocked bowel. Mary had to have a colostomy operation and spent about a week in hospital, when Mary got out of hospital she spent a lot of time at home recuperating. The hospice got in touch with Mary again about coming to the day unit for the pamper days. We talked about it and Mary decided to give it a try to see how it would be. Mary said: “sure it could do harm.” If she liked it she would go back again and if she didn’t like it she could just give it a miss and tell them “sorry it’s not for me.”
I dropped Mary off that first day at 10.30am and arranged to pick her up again at 2.30pm and told her if she wanted to be picked up earlier she should just phone me and I would come to pick her up. I left the day unit, went home and half expected to get a call in about an hour’s time. The call never came and I went back to pick her up at 2.30pm. When Mary got into the car I asked her how it went. Mary said she had a good day, the craic was good. She had her hair and nails done, the food was good and she got to see the doctor as well. She said the nurses told her it also gave me a bit of time to do what I had to do without worrying about her. I asked her would she be going back next week and Mary said yes.
Mary continued to attend the day centre over the next few weeks until she was hit with another setback. Mary developed kidney problems and had to go back into hospital for more surgery and ended up with a nephrostomy in each kidney. Shortly after this Mary started her chemotherapy and because of treatment sessions and weekly changing of nephrostomy dressings Mary could not attend the hospice. Mary missed her wee days out but was determined to return as soon as things improved. Throughout this time the staff kept in touch to see how things were going. After the treatment finished things had improved and Mary was able to have both nephrostomys removed. Several weeks later Mary contacted the hospice and made arrangements to go back to the day centre. Mary attended the day centre one day a week for the next three months. Unfortunately Mary got news at her monthly hospital checks that her cancer had become active again and she would have to go through another batch of chemotherapy sooner than expected.
Over the next few months Mary went through several tests and scans to determine the next course of action. At this time Mary still attended the day centre. Mary found that in the hospice she was among people who were in the same boat as herself. Here they could talk with others about their treatments and side effects but most importantly they would talk mostly about life in general their normal day to day routines their children, grandchildren decorating the house and things like that. It wasn’t all about doom and gloom, it was about living life to the full. Mary enjoyed the relaxing atmosphere, meeting new people and making new friends.
She enjoyed painting, card making, having her nails and hair done. During this time Mary built up a relationship with the nursing staff and could only describe them as kind, gentle, caring, very attentive and genuine.
Mary then had more kidney trouble and had to have a nephrostomy fitted in her right kidney, soon after this Mary started on her next round of chemotherapy. During this Mary still attenrf the hospice day centre. During one of Mary’s days at the hospice, the nurses noticed she was not her normal self and she was in pain, later that morning she was sick. The doctor came to see Mary and talk with her. They asked her if she would like to come into the in-patient unit for some respite care so that they could try and get on top of her current problems. The team phoned me and asked me to come over so they could discuss this with both of us. The doctor explained that currently Mary was being looked after by Belfast City Hospital, Altnagelvin Hospital, the District Nurse, and the Hospice. If Mary came in for a week or so they could deal with everything as a whole and try and get Mary back to as normal as possible.
Mary was reluctant to go into the in-patient unit because she was thinking - that’s it I am finished, I am dying.
The doctor assured Mary this was not the case she could come in and try it and if she didn’t like it she could go home again. So Mary agreed to go in but for a couple of days only. Mary went in and things seemed fine after two days one of the nurses discovered a problem with the nephrostomy. A scan was organised for that in hospital and the doctor looking after Mary’s kidney was contacted. It was discovered that the tube had popped out and was leaking so she had to go back into hospital to have this replaced after that she would return to the hospice. So Mary went into hospital for one day and night.
When I picked Mary up from the hospital and we were driving back to the hospice Mary said something to me that surprised and comforted me. She said: “I know I am not going home but it feels like I’m going home”.
Mary found that her stay in the in-patient unit was completely different to being in hospital. Now Mary’s couple of days ended up actually developing into three weeks over Christmas and the New Year. Mary got out home on Christmas morning, back in on Boxing Day out for New Year’s Eve and back in again on the 2nd of January. Mary had her own room with TV, her own bathroom and visiting time was from ten in the morning to ten at night. There were family areas that we could use when Mary got too many visitors, some nights as many as ten people would call to see her.
All the staff treated us more like we were family rather than patient and husband. One of the doctors on his night off even called in to see how Mary was doing on his way home from the Millennium Forum. Nothing seemed to be too much trouble for any of the staff from the doctors right through to the cleaners.
A perfect example is one night Mary wanted some drinking chocolate but they had none in the kitchen so someone went out and bought some and Mary had her drinking chocolate.
To us, her family, that was just like what we would have done at home, so that showed the level of care and love the staff were giving to the patients. And just a wee side note - Santa even called to give Mary a present on Christmas Eve. The photograph of Mary lying in bed with Santa standing beside her and the grin from ear to ear on her face is a treasure to have.
So Mary finally got home and continued to have her chemotherapy and attend the day unit once a week. Things were going extremely well Mary was responding to her treatment, but then suddenly in early April Mary haemorrhaged badly. We nearly lost her then. After a day in hospital things stabilised and she got home again. Unfortunately two weeks later it happened again and Mary had to go to Belfast for three weeks of emergency radiotherapy.
After this it was hoped to get Mary started back on chemotherapy as soon as she was fit again. Unfortunately this was not to happen as Mary was hit with several setbacks, one after another and had to go into hospital several times due to infections. Mary started to get weaker and stopped eating properly. On her last trip to hospital the doctors told me Mary’s time was coming soon, there was no more they could do for her, her spirit was still strong but her body could take no more.
So Mary came home and I told her she was on the last leg of her journey. Mary told me she knew and that she wasn’t stupid.
This was on a Wednesday so I went to the hospice to see if there would be a bed available for Mary and they told me it would be Monday before one became available. I went home and told Mary this and she said that was ok because wasn’t ready to go in yet. So we looked after Mary at home as best we could. But by Friday night Mary was struggling and said she was ready to go in now. When Monday morning came Mary kept asking me every half hour - is it time to go yet? I told her room wouldn’t ready until eleven o’clock but she said, ‘I’m ready to go now’. Mary had been suffering a lot of discomfort, pain and nausea and at times if she was sick after getting her tablets I couldn’t give more in case I might overdose her. Mary knew the hospice would manage her pain relief and nausea and be able to wash her, dress her and get in and out of bed better than I could. Mary was also concerned that it was all becoming too much for me to cope with and she was worrying about my health.
Mary went into the hospice on Monday morning, she got a room with a pull down bed so I could stay overnight with her. An apartment was provided for family members who wanted to stay overnight. For the next week Mary got the best care, attention and love the hospice could provide.
They did their best to ensure that Mary was not in pain, was not distressed and spent the last days of her life in comfort and worry free. Mary slipped away peacefully on the Sunday. Even in death the dignity that Mary was treated with was exemplary. I was with Mary in her room about half an hour after she had passed away when the doctor came in to attend to final procedures to be carried out. The doctor came up to Mary, talking to her as if she was still alive, apologised to her and explained to Mary what she was going to do. She stroked her forehead and hands while talking soothingly and gently and carried out her final examination. This was beautiful to see as Mary was treated with the same care, respect and love in death as well as life.
To sum everything up, both Mary and myself started out on her journey through her illness with a fear of the hospice. Our perceived conception of the hospice was that it was a place for the dying to go to. People only went there to die when they were extremely ill and spending their last days on earth. To us we believed it was a place of pain, sorrow and suffering. It was a place that both of us never wanted to be near or to end our life in.
Little did we know that our journey, through Mary’s illness, would be closely linked to the hospice, the place that held a fear and dread for us when we both in good health. Mary came to enjoy her days at the day unit. She looked forward to seeing her new friends and all the staff.
When I would pick Mary up at the end of her day she would tell me about all the craic they had that day. Mary would tell me all the things they had done and what she had for dinner.
Some weeks when Mary wasn’t feeling on top form she wasn’t sure if she could go to the hospice. On those occasions I would say - go for an hour or so and come home early if you are not feeling up to it. But every time she would stay the full day, it seemed to perk her up and when I picked her up she would say I’m glad I went today I had a good day.
Then when Mary went into the in-patient unit we got to see the big picture, the overall purpose of the hospice. The care, the compassion, the love that was given to the patients and their families.
Money couldn’t buy what we were receiving. For the staff of the hospice this isn’t a job that they are doing but nursing and caring for those who are ill is a true vocation and that comes across clearly. After Mary’s three week stay over Christmas we finally came to understand what the hospice is about.
The hospice is not just about looking after the terminally ill and giving people a place to die in comfort in. It’s not about taking people from their home. It’s not about pain and suffering. It’s not about doom and gloom.
In Mary’s journey through her illness and the hospice we found the true meaning of the hospice for us.
The hospice is about life. It’s about helping the patients and their families lead their lives as normally as is possible. It’s about the quality of life that we can lead. It’s about continuing our lives as normally as we can during our journey through illness. It’s about dignity, compassion, care and living.
When Mary’s last week of life came she couldn’t wait to go into the hospice.
Mary didn’t go there to die she went there to live her last days in dignity, in comfort and free from pain. She spent her last days with her family and extended family, the staff of the hospice.
When Mary finally slipped away from this life she was surrounded by her family and friends. It was so peaceful and calm I can only describe it as beautiful.
Finally I would like to thank Bishop Daly and Sister Anna for all their kind help, for their prayers, for helping us spiritually, their daily visits and talks and the weekly Mass. Their work was and is comforting and important to us.