 |
| 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
but maybe
I would add one more...surround yourself with beauty like this if you can...or
find the beauty where you are.
No comments:
Post a Comment