Dying Matters Awareness Week: My life with a life-limiting illness

Saturday, 13 May 2017

Vhari Ingall is a patient who is currently being supported by Prospect Hospice.

“Last summer I was taken by an ambulance to the Great Western Hospital in Swindon with abdominal pain. The paramedics and doctors first thought this was related to the diverticulitis I have lived with for many years; diverticulitis is an inflammation of the bowel which can become diseased, as mine did six years previously. But I knew that this pain was different. It felt as though it was in a different place and it was very severe – more so than any pain I had ever experienced before. After a few tests I was told by my GP that my suspicions had been right. What I had – and what I’m living with now – was terminal pancreatic cancer, completely unrelated to the diverticulitis, just as I had thought.

“I didn’t cry. I felt numb, but it didn’t come to me as a shock. I had a friend with me when I was told, and she was very upset. I found myself comforting her. When I got home I rang my sister and my father and told them my news. They were distraught – again, it felt as though I had to comfort them. I then met with some friends and told them too. They have always been so supportive of me with my diverticulitis, so I wasn’t going to hide anything from them. It was only then that I could give myself permission to cry – to face up to the fact that, now, I was scared. I was scared of the pain and how I could cope in my life with the pain that I was having and likely to have as the cancer progressed.

“Between them, my sister and my GP made contact with Prospect Hospice. I got a call from Jaqui, the Prospect Nurse who was assigned to me, and she invited me to come and have a look at what’s on offer at the hospice in Wroughton. I felt very apprehensive. I thought a hospice was going to be something resembling an old-fashioned asylum. It took a lot of encouraging for me to go there, and even then I took a friend along with me. But as soon as I saw the outside of the building, my fears evaporated. I couldn’t have been more wrong about what the hospice was going to be like.

“Jaqui showed me around and explained what the hospice does, the care that’s available there and even the complementary therapies that are on offer. The whole atmosphere was bright and positive. I felt comforted. I was invited to come to art therapy sessions once a week, and I could also access some of the complementary therapies that are available at Prospect Hospice. I found these very helpful. I could relax and it felt very therapeutic in terms of managing my symptoms and pain.

“But my health deteriorated and the pain did get worse. So, in October, I came to the hospice as an in-patient. While I was there they looked very closely at my pain and how I could manage it both at the hospice and when I went home again. During that stay they got my pain under control, my confidence grew, and we both agreed when it was the right time for me to go back home. Over the next few weeks I was managing well and still coming to the Day Therapy sessions. At this time I started to make some important decisions about my plans for what’s left of my life and for when I die too. With my family I wrote my will and saw funeral directors about what I wanted at my funeral service.

“My funeral is going to fantastic fun! I know what the readings and songs will be, where my wake – or celebration of my life – will be held, and I have said that I want people to wear bright colours and enjoy themselves while remembering me. I don’t feel awkward about saying this because, since my diagnosis, my attitude to my life has changed, for the better I think. That’s not to say that I don’t sometimes feel angry about having cancer – I do – but I don’t let trivial things bother me and I live life to the full, even when I’m at the hospice. I have a laugh with the nurses and the many friends I have made since I have been a patient here. Some of the friends I have made here have already died, but in some cases I have stayed in touch with their families, who still offer me support even during their own loss. I would never have expected to have made friends at a hospice.

“My hope is that I will spend my final days at the hospice when my time comes. I’ll be surrounded by the love and care of my family and friends and the team at Prospect Hospice, and I am confident that I’ll be without pain. That thought comforts me – that I’m loved now, that I’ll feel loved at the very end of my life, and that there will be someone here to hold my hands when I die.”

(Vhari is pictured with Michaela Kirby and Charlotte Roberts from our Therapy team)