Saturday, 11 June 2016

Living with the impact of breast cancer, a memo to myself

Yup...about sums it up!
One of my most read blogs is one I wrote on tamoxifen, a drug I took for 5 years, then declined 14 years later. But life never stands still does it? At the end of last year I was diagnosed again with breast cancer and immediately I was put on letrozole, I conceded fairly willingly as I understood this time was a bit different, although relatively early stage again. A month later I had a mastectomy and reconstruction. I've slowly been recovering whilst trying to deal with the side effects of letrozole, which was then swapped to anastrazole to see if the the joint and muscle pain would lessen. It hasn't.

I've looked up what can help with that, the answer is pain relief. As I already have back pain, this combination for me has a serious impact on my quality of life. So much that recently I decided to stop it to see is it would help with the other issue I have which is breathlessness, since my surgery. It didn't help the breathlessness but I felt stronger again, less overwhelmed and more able to get my wellbeing back. I see my surgeon next week and hope we can work out a solution together. Meantime I'm taking omega 3 as I had read about benefits of taking that to women in my situation.

I know I'm not alone in this although sometimes I feel very alone. Its hard to be prescribed a drug for cancer and to decide not to take it. It's cancer after all, you should be glad to take anything to prevent it spreading shouldn't you? I feel deeply responsible to my family to try and yet I know they also want me to do whats right for me. It's complicated I know to balance risk but also to have the energy and be free of pain to do the things that keep me well in other ways.

Of course these drugs have had endless research to prove their benefits. And just this month I read that research has now shown that 15 years on an aromatise inhibitor can bring even greater benefits. Good news? It had a paradoxical effect on me, my heart sunk.

I spend my working life campaigning to empower people to make decisions that are right for them and to support them having the knowledge to self manage their illness. I also work on facilitating a route to wellbeing, not just lack of disease and perhaps that's my biggest dilemma. I know my only answer back to well-being isn't about taking more medication but if the research is to be believed or prioritised it is seen as the only way. Much of the research in cancer is into drugs and many of those drugs have transformed people's life expectancy and that's wonderful. But if all you have is a hammer, then every problem looks like a nail.

What else helps us recover from major illness is not so well researched but we know ourselves that drugs will not be enough, and we have to be aware that they may also be one of the problems.

 As always information is power so firstly people need to know the risk benefit of medication and empowered to ask the right questions. Research has shown that doctors as patients often take lessmedication and treatment as the wider population and that's because generally they are better informed.We all need that information and then supported to make the right decision for us.

And often that support may sit best in non medical settings where we have time to think deeply about implications and maybe to learn new skills or habits to improve our wellbeing. A recent survey of cancer patients  showed in the main their care was good but knowing how to access support to cope with the many impacts of the condition was the gap. Filling that gap doesn't only help in the here and now but is the best and most cost effective investment in long term health. 

My thoughts on how to get healthy following cancer or many other serious diagnosis which I write as a memo to myself and maybe others might find them useful.

1.    Know what matters to you and shape your decisions around that

2.    Know who matters to you and prioritise time with them

3.    Do what makes you heart sing and keeps you active and engaged

4.    Get enough sleep

5.    Eat good fresh food and enough to keep you well

6.    Be kind to yourself

7.    Laugh, sing, dance, do sport.....whatever makes your life worth living

8.    Stay in the moment

9.    Live the life you want now...don't wait

This week I've been in Argyll on holiday and have been able to tick most things on this list,

but maybe I would add one more...surround yourself with beauty like this if you can...or find the beauty where you are. 

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