Published to Hospice Stories on Dec 04, 2017
My partner Marilyn Fetcher was diagnosed with breast cancer in 1997 and was then diagnosed with secondary cancer of the bones and liver in 2003. It was at this point that we were first referred to the hospice as she was given 6 months to live. She died in the hospice on 23rd November 2013, 10 years later.
Marilyn was an American Jewish woman who came over to the UK in the 1970s to work. She was an exuberant, larger than life figure with a great sense of humour, but privately struggled with the difficulties that her diagnosis brought with it, which was why the hospice played such a vital role in our lives over the 10 years she used their services.
Marilyn loved the Reiki therapy and the aromatherapy offered by the hospice, and had her hair done by the hospice hairdresser on several occasions, as she knew that they would be gentle with her as she had tumours in her skull. We also had regular appointments with the hospice doctors, who offered advice and support to us both.
Marilyn had wanted to die at home, but this was made difficult in 2013 by the NHS bureaucracy who insisted that she should be moved out of her bed in her bedroom, and instead have a hospital bed in our living room. They did this for good reasons; Marilyn had a large double bed, which made it very difficult for the District Nurses to lift or move her, and they were apologetic but were bound by regulations.
This meant that the environment that Marilyn had chosen in which to die where she was surrounded by her favourite photos and paintings, would no longer be available to her, and again this is when the hospice stepped in again to help. My sister had come up from her home to support me during the last week as I was finding it increasingly stressful and I was desperate to try to stay calm for Marilyn. Again, I found the hospice so helpful, as I could ring one of the nurses in the middle of the night for support and help, if I was unsure how to deal with some of Marilyn’s symptoms in the later stages.
The Macmillan nurse who visited several times a week, moved heaven and earth to get Marilyn a bed in the hospice if she wanted it. Because her plans for her death had been overturned, Marilyn had become quite frightened about dying at home, and when I asked her if she would prefer to die in the hospice her response was a heartfelt, “Ooh, yes please!”
So, on 20th November 2013, an ambulance took Marilyn to the hospice. They had warned me that she was so poorly she might die during the journey, but my sister, Marilyn and I wanted to take the risk.
When we arrived at the hospice door in the ambulance, most of the hospice staff were outside to greet her. And even though she was very ill, Marilyn raised herself on her arm, gave her best film star wave, and said “Hiya all” in her best American drawl!
The following day, Marilyn, my sister and I did much laughing the way we always used to do, as it was such a relief to be supported and looked after in the hospice, and not to feel alone any more.
Marilyn died peacefully at 4.45 a.m on Saturday 23rd November 2013, 3 days after arriving in the hospice.
After Marilyn died, the nurse came to talk to us, and gave me the information leaflets I would need, as she said ‘you won’t remember anything I’m telling you,’ and she was right! After 3 months, I accessed the support offered by the hospice chaplain. I saw him on several occasions, and it was so helpful to be able to talk about anything I had on my mind, to someone who understood about how you feel as a carer when you no longer have that role, and don’t know what to do with all the hours in your life which used to be filled by looking after someone you loved.
I had used some of the hospice support service myself in the past, such as attending one of the painting classes which I found very relaxing. I never used the support groups offered by the hospice to carers, as I felt that I would probably be the only gay person in the group, and that everyone would be a lot older than me. I’m sure I was wrong on both counts, but still didn’t access the support groups, despite being encouraged to do so by Marilyn.
In all the years we used the hospice services, Marilyn and I never faced any discrimination about our relationship, and everyone we met from staff and volunteers were friendly, kind and supportive. We had our Civil Partnership in January 2006, and everyone was so pleased for us.
Dr Diane C Hudson