Not just Angelina

As someone who never does well in the celebrity section in a quiz and who declines the celeb mags at the hairdresser in favour of the newspaper I have found myself, perhaps surprisingly, very moved by the Angelina Jolie story this week. I can't recall ever seeing one of her films but such is her celebrity my daughters first two goldfish were named after her and Brad! As a wee freckled Celt her olive skinned statuesque beauty is something I can only look on with awe.

Working in an industry which as we know places beauty and youth above so much , especially for women, is not easy in the best of times. And learning you have a faulty gene that puts you at very high risk of breast cancer and ovarian is certainly not the best of times. Living with the knowledge of that risk has a massive impact on those affected. The fear is omnipresent. And so she made a choice to reduce her risk that resulted in a mastectomy of both breasts and reconstruction surgery. Psychologically that's a huge decision and physically it's impact should not be forgotten. This  is massive surgery and will have taken its toll. She has shown us she is so much more than her beauty, her body, her breasts....she is an empowered, informed, woman and perhaps very importantly to her, a mother. She knows how it is to lose a mother long before her time. And she has dared an industry who judge women harshly to risk treating her differently.

I remember crying quietly when I learned of Linda McCartney's death from breast cancer. A woman  I never really warmed to. She wasn't even married to my favourite Beatle ( that would be George) but I guess what I did know is that she was a committed mother with much to live for. And her wealth couldn't save her. My tears not just for her but for the rest of us for whom money might not be enough to save us too.

Yes Angelina's wealth will have helped . In the US she will be seen as fortunate, many will  wish 
they could afford to be screened and have the option for risk reduction too.  But they will not have the
 kind of insurance that would allow that. In the UK those who are at high risk can make those choices without the worry of cost. But they do have to factor in the impact on their health and wellbeing.

There are studies too that look at tamoxifen as a preventive option. That's the same drug that many with a diagnosis of cancer stop taking because of its side effects, too lengthy to list here. Not much of an option is it? Regular screening is also an option but can only identify an early cancer with ensuing physical and psychological Impact. Reconstructive  work on a breast that has been treated for cancer can be much less successful. There are no easy answers here, yet.

I'm so glad that Angelina has taken this decision from a place of health, empowered to make the right choice for her. I welcome her honesty on behalf of others. And the ensuing debate about making these tests more affordable for others too. But let's not forget what we really need are far better 
options for people in this situation. Investment in research and collaboration to understand more fully
 how to prevent the disease has to be the best option for the longer term. And therefore better options than an are more available to frightened young women than this. 
They all deserve better.

The wisdom of patients...and carers.

Don Berwick: 'One of the most important guarantors of continuing excellence in the NHS is the ability to include and invite and listen to the wisdom of patients.'

It's been an inspiring week. I have heard some challenging and inspiring talks, had wonderful conversations, met some great people and touched base with old friends and new. I may be exhausted but its been worth it.
That's not only because of good outcomes but its also about spending time with good people. My new role is so much about connection and that's why I really enjoy it.

When I first left clinical nursing it was the connection with patients I particularly missed. That sense that you had made a difference to someone is often very immediate as a nurse. Its the thing that helps you deal with the emotional cost of the role. The power of the connection dependent on empathy,  respect and a deeper listening. It needs the right context too to flourish.  If as a clinician you are stressed through work pressures, illness or other external issues its hard to invest in a therapeutic relationship.

It's often said that people have to experience something to truly understand the issues for others. But does it really? After all we are different in our response to life's challenges so what I know about me can be in the way of what is another's truth. It's why self awareness is a fundamental part of the toolkit of the helper. Knowing where your experience and another's differ. But connecting to your own deeper understanding does help you be able to go there with others.

What being on the receiver end of care has helped me understand though is why    when your care is not person centred it is easy to disconnect. I hadn't understood before why people sometimes didn't  attend follow up. But  then when you wait hours in a follow up outpatient clinic to be told you are fine, without any exploration of what fine would be for you.  Nothing about how your life has been impacted on, simply about how a scar has healed...the visible ones at that. Yes I understand how it feels not to want to go back.

But my more recent diagnosis in a unit which is so focused on the person, my follow up has become a touch point for reassurance, talking through my options. Yes it can be the time when the journey might begin all over again...another mammogram showing recurrence but I know they will support me, care for me, do their best to see it through my eyes. Demonstrate empathy throughout my care. It's the fundamental difference between a good and bad experience of care. Securing that for everyone is something worth fighting for.

Reasons to be heartful.
I spoke to so many people this week so passionate about improving care for all I really do believe the time has come for change. And some cat and dog empathy is emerging in the Birt household. Moments of affection being observed. Breakthrough in team!

For mothers and daughters, wear your support.

When I joined Breakthrough Breast Cancer I looked forward to Fashion Targets Breast Cancer. Shopping for a good cause has a certain appeal-excuses to buy nice clothes I don't normally need. The fantastic photos of the celebrities supporting the campaign have offered iconic images over the years. One that stood out for me was Kylie wrapped in the image of the target, the emblem for the campaign. Her beauty and fragility in that moment captured for ever.

I was the same age as Kylie was when I was diagnosed with breast cancer for the first time. OK I know that's where the similarities end...my backside will never look like that! But I have recognised her reluctance to be defined by her cancer and then her courage when she has acknowledged it too. She hasn't pretended it didn't have an impact but she has also demonstrated her beauty and talent are in no way diminished.

This years fashion targets campaign has a focus on mothers and daughters. The stunning images of Sharon and Kelly Osbourne and Pearl and Daisy Lowe shine out from poster stands across the UK. As we know Sharon opted for a bilateral mastectomy after identifying her genetic high risk  of breast cancer. A brave decision which must have had a huge impact on her daughter too. As part of a  BCCEU tweet chat recently I asked the assistant director of research for Breakthrough Breast Cancer , Julia Wilson (@jul-wil)what reassurance could she give families in the future. Her reply was "our commitment we are ready to pick off different types of breast cancer one by one and stop mothers and daughter dying".
Campaigns like fashion targets may seem at one level glamorous but that's not what they are about.....they are to bring much needed funds into this work. So I will be wearing my support this year again. Here's more detail about whats on offer.

My family like many others has felt the impact for mothers and daughters. My step daughter, my daughter and I did the Edinburgh moonwalk a few years ago, less than a year after my step daughters mother had died of breast cancer. A poignant midnight trudge through our beautiful city, our hearts heavy with loss but strengthened but with that shared purpose. The sight of my son as a volunteer helper throughout the night brought tears to our eyes, as did the greeting from their Dad at the end.  Fathers, sons as well as daughters all feel the impact after all.

Reasons to be thankful.
I will leave you with the image of this particular mother with her daughter who is thankful everyday still to be here, 19 years after breast cancer first invaded our lives and also after its impact a second time. That's the result we want for everyone, so do wear your support, the money is well invested....in saving lives.

Day 30 reflections on this "one wild and precious life"

Day 30 This one wild and precious life?

The final day of the month long challenge and I feel a confession coming on...yes you know already, I missed a few. But in my head that's progress because I'm not seeing that as failure but  just allowing myself to make self preservation choices.

When I embarked on the challenge I did it to stimulate me to write a little more on some fresh topics and some of them worked well for that. But not all of the topics resonated with me, some were a bit too complicated for a life on the move ( Pinterest case in point!) and some days I just had no time. Now the old Audrey ( stop it!) would have made herself do it all or submit to some self flagellation for not doing it. But I am just accepting that some days it was a challenge too many.

Yesterday's penultimate challenge was to say three things you like about yourself. I had planned to do it . But I ran out of time ....and steam so here are two of them today. The first thing I like is that I like connecting with  people and my favourite thing to do is to build relationships with people who share my interests -on or off line. And this week alone I have met people I first knew on twitter or in the blogosphere ...how fantastic is that? The power of social media to connect not just in a shallow way but in a way that builds meaningful links. We are in transformational times and  I'm sure we can use this ability to connect differently in powerful ways in the future.

The second thing is that I like that I am open to new challenges, not just of the blogging variety, but in life in general. Having a new career is of course my major new challenge and its really important that as I work with others to look deeper in themselves to grow and develop, that I too am open for that. It's not easy to move out of your comfort zone in to new terrain and each time I do it I have moments when I wonder why.....why on earth I am putting myself through it but also why on earth I didn't do it earlier! We are all complex beings and maybe a positive legacy of a life threatening disease for me...is not to miss the challenges I can learn from and that can bring me fresh connection, new joy.

My reflections on the blogging challenge is that it did inspire me to write a little more. Some of the topics provoked unexpected insights. The image of the black panther was one in particular, evoking so many reactions. The question on 
whether adversity makes us bloom another trigger, this time of anger. Yes we can learn new things from the cancer but frankly most of them could perhaps be learned in much less traumatic ways.

My anniversary post helped me acknowledge not just my history but also my loss. Much though I may have wanted to have boxed it all away , tied up with a nice pink ribbon it just wasn't that easy. And I have had to face I have lost my wellbeing, my confidence in my health and in some respects,my job ( my choice but not for reasons of my choosing).

So the blogging challenge helped me express some things I hope have helped others, have some cathartic release and enabled some honest self appraisal. Mmmmm I wonder what the next challenge could be for this "one wild and precious life."

The Summer Day

Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean--
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down--
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
With your one wild and precious life?

Mary Oliver 

Never doubt...every day courage Day 22

“Never doubt that a small group of thoughtful, committed citizens can change the world.” - Margaret Mead

When I did counselling training some  years ago now, a phrase I heard stayed with me. It was "challenge people on their strengths". In other words open people's minds to the possible, rather than focus on what they aren't doing or can't do. It always resonated with me and so it came to mind again with this task today.

What fuels my activism is when I see others living their dreams for a better world, facing their challenges head on, being the change they want to see in the world. They inspire me to expect more, overcome the barriers, let go of the learned helplessness or even hopelessness and hold fast to my fundamental beliefs that things can be better.

Those people who stand firm- in the fire of dissent, of ridicule, of belittling, of hierarchy,  of power- and say  "this is not inevitable, this can be better". It's that everyday courage that proclaims their right to stand  alone and be true to their beliefs. It's the courage to stand with the discomfort, against the tide and know that your conviction is guiding you in the right direction.

Whatever the cause, this courage always inspires me and gives me the strength to hold fast to my own belief in a heartful health system, not only for breast cancer but for all requiring health and social care.

One that listens, cares, respects and enables people to be  active and engaged partners in their care, not merely passive recipients. A system that recognises the power of the shared individual experience to enable an improved experience for all. A system that recognises that all involved in providing the service need to feel equally valued and confident to live out the values themselves.

I do believe it can happen if we are all willing to let go of what gets in the way and respect and trust that change can happen....and if we hold fast to our courage to follow it through.

If we had no winter? Day 21

“The flower that blooms in adversity is the rarest and most beautiful of all.” – Mulan

Perhaps we have all witnessed this? The person who grows with their challenge, whose inner beauty emerges more fully as they meet their  challenge head on. Their grace uplifting to witness and wonder at. I have friends whose wisdom and inner peace has deepened as they have approached their terminal illnesses. I have learned so much from them and had conversations that I could never have hoped to have with others in different circumstance. A rare gift in many respects and their beauty has indeed shone.

But when I think of what makes me bloom, it's not adversity. Adversity has many impacts I have found. It clarifies the priorities in life, the sharp contrasts brought into focus. It makes you find your courage in the deeper places . It makes you witness those you love having to struggle alongside you, your adversity inevitably theirs. It brings pain in all it's forms. It challenges you to find solutions in unexplored places. It helps you learn you can survive those challenging times. It reminds you that life can have many phases, unplanned and unprepared for so don't waste it. It makes you value the spring. 

But it doesn't make me bloom.

What makes me bloom is quite , quite different. It's feeling fully engaged with life. It's feeling that I am making a difference in my work and valued for what I do. It's seeing those I love, my family and friends,  happy and living with meaning in their lives. It's finding joy in the simple things in life, in a walk on a beach, a bird in flight and the flower appearing in spring. It's in loving and being loved in return.

I take it back...Day 18

Today's challenge took me back to my first diagnosis with cancer. I had just returned to my role as a nurse after sick leave and bereavement leave.I was working in a medical practice in my own town. I specialised in seeing people with long term conditions and for counselling. I loved my work.

It was all about the relationships we built, we got to be part of their lives, we knew their families, we heard stories no others were told, they trusted us. We shared their ups and downs .....but it wasn't the deal that they shared ours. So although I had just returned after a particularly awful time in my life, my patients in the main did not know.  But they had felt my absence at some level.

And so it was one day-when I was so exhausted- the mojo having long since left town, a certain older woman came into the consulting room. We knew each other and she harrumphed into the chair, looked me straight in the eye and demanded-"so where have you been, on a course or something?" For me it was the step too far. The straw that broke the back of the carer who was feeling the burden of guilt ( however unfounded that was) for letting so many others down. I was struggling with the energy to care for my children, I felt I had been unable to really help my dying father and my grieving mother as I would have wanted to in other circumstance. Her challenge touched raw nerves and the part of me that was still licking my own wounds.

"No , not a course I said, I have been having treatment for breast cancer". Of course she was stunned and also so upset for me. I was young, and it was the last thing she expected. I spent the next ten minutes reassuring her and kicking myself. I have almost forgiven myself for cracking and not just shaking it off as I had so many other things and said nothing.But I'm human and sometimes we need to just be that.