This was originally posted here: http://connect4life.blogspot.co.uk/2015/05/life-history-and-long-term-conditions.html
When I got the bad news that I had a diagnosis of an advanced bowel cancer, even though I had had 6 months following my operation to prepare, it still took me a while to get my head around the idea. I doubt if I've still fully processed it, or properly discussed it with everyone that matters to me, but I'm doing my best to get on with this.
Getting a serious diagnosis is definitely a time that many of us start to think about what really matters to us. Who we are, what our wishes, hopes and fears are.
Person Centred Thinking offers a set of tools and questions that help us with this. Using them to think with the people we love, and the people who know us best helps us have those important conversations.
I recently posted my One Page Profile here which is one example of person centred thinking. I've now shared it with my Oncologist who said she would find it really useful as a way of helping her understand my wishes. She has photocopied it to share with the whole Multi-Disciplinary Team involved in my care. I'll be sharing it on my visits to the Rosemere for chemo, and with the District Nurses who will be looking after my PICC line and taking down my bolus pump and syringe.
Another tool that helps with this kind of thinking is the 'History and Important Memories' Timeline. I found it in the 'Living Well' document developed by Lancashire County Council with Helen Sanderson Associates. They designed the pack as a way to help people and their families being supported in palliative and end of life care. I've begun to fill it in, and I'm including an example of an early draft here. There is still loads of important detail to include!
One of the most difficult things about having an advanced cancer is the uncertainty. If you ask your oncologist 'How long have I got then?', they have no way of giving you an answer. I'm starting a course of chemotherapy that might cause the secondary cancers to disappear, shrink, stand still or simply not be effective. It's impossible to say until it happens. If it doesn't work then I hope there's something else to try up her sleeve! I'm meeting people who have walked around with a cancer for 10 years, managing it with chemo, others who have seen their cancers become very aggressive, others whose cancers have gone into remission for no apparent reason. I could become any of these people.
Stepping back to think about your past is one way to prepare for an uncertain future, and that's how I'm using this 'history' tool. I'm at an early stage, but I'm gradually adding in more and more important events, places and people from my past.
Filling it in has made me think about some of the formative events and experiences that helped me establish my values as well as the joyful times I've spent with the people that matter to me most.
It has also made me think about the future quite differently. A few months ago I might have expected the end of the arrow to look like "cancer metastasises - pain and suffering - death".
Instead mine shows " back to work - cancer metastasises - camping trip, holiday in Venice - more chemo".
I'm already using this different perspective to work with my managers to put together a plan for how I can continue working and avoid major risks while having chemo. I'll also use it to help me prepare my family for some of the tough times and possibilities ahead. I'm learning to say "I have advanced bowel cancer, I'm managing it with chemo and the help of my family, colleagues, friends and the people at the Rosemere unit".
I'll be working through more of these tools, and sharing them as part of my work with Connect 4 Life. I feel my past experience as a trainer in the world of person centred planning puts me in a position where I can help both service providers and people living with long term health conditions see some of the potential in these tools as a way of regaining some control in life in times that are unpredictable, when it's too easy for others to take over. I'm hoping that by sharing tools like this, I can help services and family carers help many other people facing similar health issues win more control in the direction of their lives and support.