Sunday, 19 June 2016

Love matters and not just on fathers day

It's Father's Day today and I posted a photo on Facebook of my Dad as a young man. Full of life, starting out in his career in the Royal Navy, with a hint of the twinkle in his eye that we all remember. He served his time during the Second World War and saw more than a young man should of death and learned things about an imperfect world which shaped his politics and in time my own.
He was a miner when I was born but through my childhood he studied and became a safety specialist. He taught us (my sister and I; his two daughters), that education mattered, that we should believe in our ability and that family mattered. He taught us compassion for others and whatever else I knew, I knew he loved us all deeply. He was a man quick to give a big hug whenever you needed it. I still miss those hugs but I see his qualities in all his grandchildren and in my sister and I. He'd be proud of us all.
I still find when there are big political moments I want to pick up the phone to him although he died over 20 years ago. Old habits you see. And this week has been one of them. I know had he still been here, when he heard of Jo Cox death he would have cried as I did. He would have loved her unpretentious  northern working class roots, her fearless telling of truth to power and her compassion for others. He would have been shocked to his core that a man would murder a woman like that. But then he has not lived through this time when social media has provided a vehicle for such hatred and vile abuse towards women in public life.
I grew up thinking all men were like the ones I've been so lucky to share my life with. It still shocks me profoundly to realise how different some men are with regard to women.
I do realise that Jo Cox murder is a complex set of circumstance and that male MPs get horrible abuse too but I don't think we should not lose sight of the fact this was a violent act by a man against a woman; a woman who dared to be in a position of power. This EU referendum campaign has been increasingly unpleasant, with a ramping up of fear and anti-immigration rhetoric that has echoes of fascism that terrify me. We also can't ignore that it was in that context that Jo Cox was murdered. There is a climate of disrespect towards our public servants and whilst there are some who have not earned that respect, the reality is that many have and yet are so often the target of cynical disregard at best. The many parliamentarians I have met over several years are amongst the hardest working and committed people I know. They sacrifice time with family and friends to do work that they are rarely thanked for and are taking risks with their security that most of us would balk at. Main stream media as well as social media play their own role in this climate of distrust.
Yes it's a complex set of circumstance that contributed to the death of a very special young woman and our world is poorer as a result. So there are no easy solutions to where we find ourselves. What shaped the person who killed this wonderful young woman? Extreme views don't evolve from nowhere. The research around adverse childhood experiences (ACE)  would point to the likelihood of a relevant backstory playing a part as well as the febrile political context.
I share the view expressed by Jo Cox sister that there are more good people than not. I agree that love should be our guide not hate; that compassion not judgement should shape our decisions and our policies.
I agree too that we need to ensure that our public servants are safer but would suggest the most effective way to do that over time is to change the culture in which they serve; foster a culture that enables them to do their best work on our behalf and that values and respects equally the contribution of women and men. I would love to see a culture where positive political campaigning is the norm, where everyone has the opportunity to contribute and accountability is the norm.
I know this world is a kinder place than the recent debate would have us believe, In this week alone I have witnessed great kindness in the Contact the Elderly group I volunteer with; volunteers giving their Sunday to not just preventing social isolation in the vulnerable older people but really bringing love, songs and laughter into their lives as well. I also experienced huge kindness personally this week from healthcare staff as well as witnessing great tenderness too for example from a porter to a frail older person as I awaited my appointment. As this woeful referendum campaign draws to a welcome close and we move into whatever context that emerges, I really hope we can drown out the negativity and make that kind of compassion shape our future. For all our sakes. I'm immensely grateful that family life has taught me that love will always outshine hate. To all Dads and Mums out there who teach their children the same, thank you, you're shaping the kind of world we will all thrive in.

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.