This blog was originally published on Dyingwell.uk, a website owned by Clair Fisher.
In Clair’s words: “Dying Well was my retirement project. A space for me to document my personal journey, to explore the evidence around wellbeing in terminal illness and test out some of the theories.”
Don’t panic… I’m still ok!
For the past couple of weeks I’ve been getting support from St. Catherine’s Hospice. It’s been an amazingly positive experience. However, it seems to have caused alarm with some of those closest to me. Others who I know in a similar position to myself seem surprised that I’m ‘ready’ for hospice care when I am still ‘so alive’.
So I thought I’d write a little bit about my experience and why I am a fan of early intervention from the hospice team.
From the moment of diagnosis, I have always been receiving ‘Palliative Care’. Initially seeing that box ticked on the consent form was a bit of a shock, but hey, with stage 4 cancer you know what’s coming. Over the past 2 years I’ve come to realise that Palliative Care is really just treatment that is designed to extend life and maximise quality of life. During that time I’ve talked honestly and openly to my friends and family about the fact that my days on this earth are limited, and we’ve begun to make plans about what’s next.
So I was fairly relaxed when my oncology team suggest a referral to my local hospice pain team. The suggestion was made with extreme sensitivity; they were clearly aware that I might struggle with the word ‘hospice’. But I am a pragmatic person and keen to engage with some experts who had the tools to help me!
The first phone call from St. Catherine’s was made with equal sensitivity. They are clearly used to people feeling a bit wobbly about needing to speak to a hospice. My first appointment was a video call with a Doctor – a full hour – to review my pain meds. The most important thing about this conversation was that I felt like I was able to explain who I was, what was important to me and what I wanted to be able to do. I am used to medical appointments. I am used to endless medical appointments. Appointments where I get scanned or where scans are reviewed. Appointments where bloods are taken, consents given, procedures described, prescriptions written, drugs administered and plans made. But this conversation was different. It felt like the cancer was the least interesting thing about me, it felt like I was allowed to talk about wanting to be able to run, to sleep well, think clearly and parent happily. This conversation was about enabling me to do those things, to give me the freedom to continue to be me.
This conversation convinced me that the hospice team aren’t just waiting for me to die, they are there to support me to live well.
Hospices offer so many services, many of them community based or available remotely like these pain clinics. They provide advice for all the end of life admin and benefits, counselling services and wellbeing programmes. They support families through grief and bereavement. (Hospice UK has a directory of services.)
I haven’t even stepped foot inside the hospice, but already I feel so supported and so welcome. I’m still not sure where I want to die. I’ve been sick at home and sick in hospitals, and neither feel ideal to be honest. But I’ve watched the welcome tour video of St. Catherine’s and it feels so reassuring. it seems like the perfect in between place. I’m not going to be going there anytime soon, but knowing that there are comfortable rooms with access to the garden and a friendly team who know how to take the pain away is worth so much – even right now.
For every other major change in our lives – new school, university, home, employer – we visit, we make plans, review brochures. For me it makes sense to look ahead like this. Living with terminal illness is constant uncertainty. So seeing this glimpse of a possible future is comforting.
Talking to a hospice early won’t make your life any shorter, but it might make it better.