Amy, 36, isn’t what you may suppose a typical Hospice patient looks like, but if there is one thing that she wants people to understand, it is that there isn’t a typical ‘hospice patient’. A diagnosis like hers, could happen to anyone, your sister, your mum, your best friend and that the Hospice is there for you, if it does.
Amy was diagnosed with stage 4 lung cancer last year when her baby, Robert, was 8 months old. As a clinical psychologist she knew about Hospices and in fact, had done part of her training in one. She is under no illusion about what Hospice’s can and can’t do, but was still reluctant to be involved with Isabel, especially if it meant going into the Hospice, feeling like it was just another way in which her life was changing for the worse.
Amy said “It got to the stage where I was so unwell and in pain that I couldn’t even walk downstairs to get my baby his milk. My Dad, who had moved in with my Mum to help me and Kipp, my husband, had to do that, and if I was lucky, I was able to feed Robert, but often I just couldn’t because I was being sick. I couldn’t go downstairs as the smell of food made me sick, I couldn’t pick Robert up or play with him on the floor. Life was pretty miserable and I felt really rubbish about my diagnosis and how things were progressing.
My Hospice CNS (clinical nurse specialist) and the Hospice community doctor worked really hard to help me come to terms with being admitted to the In-Patient Unit. If I was going to leave my baby for any length of time, there had to be a really, really good reason for it. Time felt short for me. But, when I was admitted to the Unit, it was the best thing I could have done and it changed everything.
The first 3 nurses I saw, all asked me about Robert. I felt like I was seen as a mother, a person - not just another patient. They were able to get my pain and nausea under control quickly and they set up one of the wards for just me, Kipp and our baby. We were understood to be a family unit and it was never a problem for Robert to be with me, night or day, although we chose for him to be at home with grandparents to try and stick to a routine for him. The needs of my parents and siblings to be with me was also understood and supported, and that also helped me feel like I was seen and cared about.
Once I’d been admitted to the Unit and began to feel better, I could pick Robert up and give him his lunch. The Hospice staff were incredibly supportive, professional, kind and confident, and that in turn made me confident about going home.
In the 10 days I was there I worked in partnership with the doctors and nurses. They were respectful of my decisions and of how much we had achieved and managed as a family at home too. Making decisions together and being listened too was really important to me.
I am still trying to feel like me which is hard with my diagnosis and the treatment. However, this weekend we had our first weekend as just me Kipp and Robert for the first time in six months, which was really special.
My Dad recently remarked that he feels I’m stronger physically now than I was before I was pregnant and the Hospice has been able to help me get to this stage.
I don’t have time on my side and Isabel Hospice is helping me make the most every day, by keeping me as well as possible, so I have as much time with my husband and my baby, and my wider family, as is possible.