Friday, 29 May 2015

Using Life History To Think About the Past and Prepare for the Future

This was originally posted here:

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.

Thursday, 7 May 2015

My Bowel Cancer One Page Profile:

This was originally posted on the Connect4Life blog: thought I would share it here too!

One page profiles are a simple way that people with long term health conditions can tell our story and express our preferences.
They have a starkly simple format: They have just 3 questions:
  • What people like and admire about me.
  • What is important to me
  • How to support me well.
Max Neill, who works with Connect4Life as a community connector has just written a one page profile to share with his family, friends, workmates and health professionals involved in supporting him with his cancer.

He said "Last September I was diagnosed with bowel cancer and had an emergency operation followed by precautionary chemotherapy. In the last few weeks a scan revealed that despite the chemo, the cancer has metastasised, with new growths on my peritoneum and lymph. Obviously this means that I have a lot further to go on my cancer journey, but as well as being a cancer patient, I'm also a family man, a Connect4Life worker and someone who enjoys a game of Dungeons and Dragons!"

"I decided to write a one page profile for a few reasons. I thought it would be a good way to gather my thoughts together at a stressful time and express my wishes clearly. I'm going to see my oncologist again next week to discuss my options, and I wanted her to know that I want to do what I can to work towards a cure. I'll share it with people like my ostomy nurse and the district nurses who've been supporting me with my chemo, and the staff at the Rosemere Unit."

"I'm hoping that it will be a way to avoid having to answer the same questions over and over again!
I like the one page profile because it is so simple, yet it enables you to say so much. It avoids all the medical jargon, and it helps you have the important conversations you need to have at a time like this, both while you're making it, and while you're sharing it."

"It's too easy in a big busy healthcare system for your identity to be subsumed by your diagnosis. I want to use my one page profile so that who I am comes off the page, and I'm recognised as a person with my own priorities and my own hopes and fears. I think a tool like this would be useful to so many people, why shouldn't every cancer patient be helped to write a One Page Profile?"

You can find out more about One Page Profiles by following the links below:

This is a blog with one hundred examples of One Page Profiles being used in many different ways:

Here's a blog advocating the use of One Page Profiles with Older People living with cancer:

Here's Amanda's One Page Profile written around her breast cancer:

The Learning Community for Person Centred Practices have shared many examples of One Page Profiles:

Here's a blog showing how One Page Profiles can be used in personalising health services:

Think About Your Life offers a whole range of thinking resources to people living with cancer, including a template for a One Page Profile:

You can also get in touch with Connect4Life!

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