My terminal diagnosis started at work when I was suddenly struck down and became completely paralysed. I was rushed to hospital and after lots of tests I was diagnosed with amyloidosis, a rare disease in which abnormal protein builds up in organs and tissues.
The first time I came to visit Hospice in the Weald I met Hannie, the Hospice’s Advance Nurse Practitioner. She showed me round the Hospice, including the lovely gardens and quiet room, and told me about all of the services and support the Hospice could offer me. At this first meeting with Hannie, I was a bit down and worried. Hannie explained to me that all patients have the opportunity to feed into their individual Advance Care Plan. With the support of the Hospice all of my decisions were also written down in a living will and it was amazing to know that if it comes to the point that I can’t express my wishes myself, they are already in place and will be respected until the end. A weight really lifted off my shoulders. It was also very important to me that I could include my partner Gary in decision-making and that his thoughts were also considered in the plans we were making. I never knew all of these options were available to me for my end of life care.
With Hannie's support I also planned to have my body donated to medical research when I die. My condition is so rare that they’re in need of people to donate their body for research to be carried out into the causes and treatment of the disease. It’s important to me that once I am dead I can continue to help others – it gives me peace of mind that I may be able to help other people with the same condition in the future.
When I first started visiting Hospice Day Service more regularly, I was introduced to their Creative Arts Assistant, Georgia. Initially, I thought ‘I really don’t want to do drawing’ – that’s all I thought creative arts was. But when I met Georgia for the first time, I realised it was so much more than that. I expressed my interest in stamp collecting and told her of how I had had to give up creating my collection books because I had lost mobility in both my hands and fingers and therefore lost the ability to write. Georgia worked with me so I could continue collating my collection and helped me type up what I needed instead of handwriting. Through my stamp collection I have learnt more about my own heritage – I’ve discovered I’m from the Pitcairn Islands, a tiny group of islands with a population of only about 60! With Georgia’s help, I’ve even started writing an article about my project for the islands’ punlications The Pitcairn Log and The Bounty. It has been amazing to be able to engage in my hobby again. Working with Georgia has made me forget about the fact that I can no longer write and helped to re-inspire me in my project – it has been a very empowering experience. I still can’t believe how much individual attention I have been given by staff at the Hospice.
I really look forward to coming into the Hospice Day Service – a massive change from that first referral! It’s so lovely to get out, meet other people and access the care and support the Hospice offers. I thought you came into the Hospice, went onto the ward and died – I never realised how much the Hospice can help people and in so many different ways. I now have something to look forward to. I don’t think about dying now. I am focused on celebrating the life I have lived and continue to live.