I recently lost my father to cancer on Saturday 1st May 2021, after being diagnosed with terminal cancer of the lung with bone metastases in November 2020. He had been misdiagnosed with early-onset osteoarthritis for 8-months before his diagnosis last year, and by that time, it was unfortunately too late. He was placed onto an end-of-life care plan and spent 4-weeks in hospital, followed by 4-months living with me for full-time care, until he eventually was put into a nursing home, and shortly after that moved to hospice to pass away.
Many things went wrong, and I was shocked to see the gaps in end-of-life/palliative care and how much support is missing for terminally ill people and their families.
I’m entirely open to the possibility that perhaps, we were just unlucky. I’m also available to conclude that maybe this was just one of many results of the pandemic and the strain our services are experiencing. But I’ve wondered that maybe, just perhaps, there is a problem or many problems, and perhaps I could help fix just one of them as a legacy for my father.
I wouldn’t want to explore this possibility without speaking to others to see if anything is a theme or reoccurring in multiple people’s experiences. Therefore, I would love to talk to as many people as possible about their experiences supporting someone and advocating for someone with a terminal illness - the good and the bad, of course.
This is just an informal conversation. I want to help to evoke some change in whatever big or small way I can. I’m not sure what that change is yet, but I’m hoping that with the help of others, we can determine one thing that we could make better. It also might just help people who are going through this - to know that they’re not alone.
Please, if you have 10-minutes to spare, please share your experience below. I’d love to hear as much or as little of your story as you are happy to share. Most importantly, I’m looking to hear about what YOU think could make/have made your or your loved one’s experience better, more comfortable, more accessible, or less stressful, and anything significant you think is missing.