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
This blog is about my thoughts on my own experience of breast cancer and becoming disabled, on self care, my passion for improving health and healthcare and about heartful leadership in all areas of life.
Tuesday, 30 April 2013
Monday, 22 April 2013
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.
Sunday, 21 April 2013
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.
Thursday, 18 April 2013
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.
Sunday, 14 April 2013
Shouting out on Day 13
Today's challenge is a shout out to fellow activists who have helped you. I am inspired by many people I see as activists making a difference for others but there are only two breast cancer blogs I regularly follow. That is no disservice to the others, it's just that it overwhelms me to read too much about breast cancer so by necessity I ration my intake. The two blogs I read are by Marie of @jbbc Journeying Beyond Breast Cancer and Yvonne of Time to Consider the Lillies. I love their quiet wisdom, lyrical prose and deep honesty about the impact breast cancer has had on their lives.
I feel that often they are talking my truths , eloquently describing my own pain. And even with all that when their blogs pop up in my email I look forward to reading them. We cover three countries and two continents and although we share a celtic heritage, what is our true community is the landscape left by breast cancer. I'm so glad to have found them in that community...I just wish for their sakes.....and for so many others that it was in different circumstance. So this is my way of giving a big shout out to them.
The blogs in particular I would like to draw your attention to during this months challenge are therefore from Marie and Yvonne.
Marie's letter to her 16 year old self was especially beautiful. But when she wrote that she didn't want to say too much about the future to her as she didn't want to scare her it said so,so much. I lived her grief with her in that monent. Thanks so much Marie for your wisdom and for how you create a community in breast cancer for so many.
http://journeyingbeyondbreastcancer.com/2013/04/06/health-activist-writers-month-challenge-day-6-hawmc-2/
And from Yvonne I want to share with you her blog entitled the Cancer Ice breaker. I love that she ignored the brief and broke the rules that day to write something she wanted to.http://timetoconsiderthelilies.com/2013/04/09/breast-cancer-ice-breaker/
Keep writing and breaking the rules all!
I feel that often they are talking my truths , eloquently describing my own pain. And even with all that when their blogs pop up in my email I look forward to reading them. We cover three countries and two continents and although we share a celtic heritage, what is our true community is the landscape left by breast cancer. I'm so glad to have found them in that community...I just wish for their sakes.....and for so many others that it was in different circumstance. So this is my way of giving a big shout out to them.
The blogs in particular I would like to draw your attention to during this months challenge are therefore from Marie and Yvonne.
Marie's letter to her 16 year old self was especially beautiful. But when she wrote that she didn't want to say too much about the future to her as she didn't want to scare her it said so,so much. I lived her grief with her in that monent. Thanks so much Marie for your wisdom and for how you create a community in breast cancer for so many.
http://journeyingbeyondbreastcancer.com/2013/04/06/health-activist-writers-month-challenge-day-6-hawmc-2/
And from Yvonne I want to share with you her blog entitled the Cancer Ice breaker. I love that she ignored the brief and broke the rules that day to write something she wanted to.http://timetoconsiderthelilies.com/2013/04/09/breast-cancer-ice-breaker/
Keep writing and breaking the rules all!
Friday, 12 April 2013
Take time to be kind....to yourself. Day 12
Day 12 is what would you advice yourself on day of diagnosis. I am not at my desk so this is by necessity simple and fast. But really so is my message. It's:
Take time to be kind to yourself, don't worry about work, prioritise yourself, and focus on getting through treatment and getting well again.
I tried to keep everything going and I couldn't really do that and do what I needed to recover. Would I do it differently now. Yes indeed.
Take time to be kind to yourself, don't worry about work, prioritise yourself, and focus on getting through treatment and getting well again.
I tried to keep everything going and I couldn't really do that and do what I needed to recover. Would I do it differently now. Yes indeed.
Thursday, 11 April 2013
First do no harm?
First do no harm?
When I first started work in charities I found people would tell me their stories, first of diabetes, more recently with breast cancer. Taxi journeys became sources of information, a litmus test of services and experiences of living with these conditions. It's amazing once the flood gates are opened how revealing the conversations become.
And more recently as my work focuses on the lived experience of care, these are now my landscape. Discussions may start differently but in time I hear a story of care......or let's be honest often it's just the opposite. By Friday afternoon I wanted to put my head on the desk and weep at the poor care and insensitivity I had heard about in that one day alone. It grieves me sorely to say it but its true.
A book I read as a student nurse came back to me " Limits to medicine" by Ivan Illich . It's not a lazy read for a Sunday morning under the covers. It demands your full engagement and for those like me, time to stop and recover from its challenging messages. It was written in the 1970s but as I have dipped back into the text I am reeling from its contemporary resonance.
Illich describes three levels of iatrogenesis. Clinical iatrogenesis is the injury done to patients by ineffective care and potentially at times toxic treatments.
Social iatrogenesis results from the medicalisation of life. More and more problems are seen as amenable to medical intervention. Pharmaceutical companies arguably then developing expensive treatments for previously unknown diseases. Society finding solutions to its ill-health in medicine alone.
Worse than all of this for Illich is cultural iatrogenesis, the destruction of traditional ways of dealing with and making sense of death, pain, and sickness. “A society's image of death,” argues Illich, “reveals the level of independence of its people, their personal relatedness, self reliance, and aliveness.”
Do we recognise these levels in the crisis we hear about daily in healthcare?Are we dealing with those very issues in our care systems now? Our communities in the developed world have seen signs of losing their potential to care for and support their own. Individuals have lost the same capacity to self care, persuaded by modern medicine that a pill instead will offer salvation? And our welcome recent focus on patient safety a much needed response to the potential of care and treatment to cause harm.
But it can be different once we recognise the need for change. Look at the success of the patient safety programmes. The self management fund in Scotland a hugely valuable approach to enabling people and communities too unlock their own capacity, to find non medical solutions to improving their well-being. The new public health not only talking about asset based approaches ( traditional healthcare tends to focus on deficits) but on all the dimensions of the Fifth wave......including dare I say...love being our force for change. A heartful driven approach.
I'm an optimist at heart...I need to see the potential to change. Consequently I like the point made by Phil Hanlon and Sandra Carlisle in After Now. "The lesson of history is that we should be hopeful ........we have already observed how traumatising it was for the crofters to be pulled off the land and into factories...Yet each of these transitions represented an important chapter in human history. Each transition brought in new ways of living which brought many benefits. That, we hope , is whats next for a healthy Scotland."
Reasons to be heartful
What Illich drew to our awareness thirty years ago now in many ways is received wisdom. At some levels we are now responding to it. That gives me hope for the future but also begs the question.......who aren't we listening to now? Who could really help us avoid learning the hard way?
When I first started work in charities I found people would tell me their stories, first of diabetes, more recently with breast cancer. Taxi journeys became sources of information, a litmus test of services and experiences of living with these conditions. It's amazing once the flood gates are opened how revealing the conversations become.
And more recently as my work focuses on the lived experience of care, these are now my landscape. Discussions may start differently but in time I hear a story of care......or let's be honest often it's just the opposite. By Friday afternoon I wanted to put my head on the desk and weep at the poor care and insensitivity I had heard about in that one day alone. It grieves me sorely to say it but its true.
A book I read as a student nurse came back to me " Limits to medicine" by Ivan Illich . It's not a lazy read for a Sunday morning under the covers. It demands your full engagement and for those like me, time to stop and recover from its challenging messages. It was written in the 1970s but as I have dipped back into the text I am reeling from its contemporary resonance.
Illich describes three levels of iatrogenesis. Clinical iatrogenesis is the injury done to patients by ineffective care and potentially at times toxic treatments.
Social iatrogenesis results from the medicalisation of life. More and more problems are seen as amenable to medical intervention. Pharmaceutical companies arguably then developing expensive treatments for previously unknown diseases. Society finding solutions to its ill-health in medicine alone.
Worse than all of this for Illich is cultural iatrogenesis, the destruction of traditional ways of dealing with and making sense of death, pain, and sickness. “A society's image of death,” argues Illich, “reveals the level of independence of its people, their personal relatedness, self reliance, and aliveness.”
Do we recognise these levels in the crisis we hear about daily in healthcare?Are we dealing with those very issues in our care systems now? Our communities in the developed world have seen signs of losing their potential to care for and support their own. Individuals have lost the same capacity to self care, persuaded by modern medicine that a pill instead will offer salvation? And our welcome recent focus on patient safety a much needed response to the potential of care and treatment to cause harm.
But it can be different once we recognise the need for change. Look at the success of the patient safety programmes. The self management fund in Scotland a hugely valuable approach to enabling people and communities too unlock their own capacity, to find non medical solutions to improving their well-being. The new public health not only talking about asset based approaches ( traditional healthcare tends to focus on deficits) but on all the dimensions of the Fifth wave......including dare I say...love being our force for change. A heartful driven approach.
I'm an optimist at heart...I need to see the potential to change. Consequently I like the point made by Phil Hanlon and Sandra Carlisle in After Now. "The lesson of history is that we should be hopeful ........we have already observed how traumatising it was for the crofters to be pulled off the land and into factories...Yet each of these transitions represented an important chapter in human history. Each transition brought in new ways of living which brought many benefits. That, we hope , is whats next for a healthy Scotland."
Reasons to be heartful
What Illich drew to our awareness thirty years ago now in many ways is received wisdom. At some levels we are now responding to it. That gives me hope for the future but also begs the question.......who aren't we listening to now? Who could really help us avoid learning the hard way?
Apps and blips. Day 11
Your favourite app and social media platform is the challenge. I have said often how I love twitter so I don't plan to say much more other than I love how it connects. It does however have its risks and this week as major news broke in the UK about the death of Margaret Thatcher, I closed it down. Not wishing to be taken down a route of no return. She was a woman who stimulated strong reactions...and I'm not immune to them!
One which does not contain the same risks and the social medium I have enjoyed just to lift my soul is Blipfoto. It's a daily photo diary. I don't post daily but it reminds me to look for the beauty of moments that I may have previously let pass. Others posts are amazing and each photo generally has a little story to give the context. My photos of the cat and dog are the ones most viewed of course!
But most importantly the app I really want to tell you about it's the ibreastcheck. It's an app developed by Breakthrough Breast Cancer and shows how to be breast aware, has a risk calculator ( with information on why) for breast cancer and has a reminder you can set so you don't forget to check your breasts. It's what women said they needed to know. It's award winning and I can't recommend it enough. Tell all your friends.
http://www.ibreastcheck.com/
Wednesday, 10 April 2013
The light and the shade Day 10
I'm the one in the family that takes photos. There's something for me about capturing precious times. Never being absolutely sure they are certain in the future. It's a source of irritation for my children in particular! There is also something slightly ridiculous taking a photo with an iPad......it's so large and cumbersome, but it's fantastic to catch a moment in time. And family gatherings are easy with a screen so large. But usually I'm not in these gatherings, being the one behind the camera.
To be really honest I'm not that keen to have my photo taken, I stiffen, close my eyes, smile awkwardly and then press delete.
This makes today's challenge-just that-a challenge.
When I created a website recently I had to find some photos to use. The one I have chosen ,I used too in my website. www.audreybirt.com.
The designer, Emily Hogarth cleverly integrated it into the design. It feels very personal, a real sense of who I am, so much of my experience, the light and the shade somewhere in the smile.
Tuesday, 9 April 2013
No act of kindness is ever wasted....day 9
Advice for carers is today's task.
As many of us will be, I have been both a carer and someone in need of care. There is no doubt both are hard. And I have found it so hard to write this. In part I'm reluctant to offer advice when we are all so different. I don't wish to be prescriptive so here are a couple of things that helped me both times I had treatment for cancer. They may work for you too.
Recently when I was convalescing my son and his partner really helped by coming over and making a meal then staying and sharing it with us. I loved that, they helped us both and we got to enjoy their company too. Absolutely the best of both worlds.
When my children were little and I had cancer for the first time, the offer from friends to take them, to give them a break was so valuable. I could relax knowing they were having fun.I felt less guilty and they got relief from the burden of a sick parent. It helped us all survive a difficult time.
Small things matter remember and sometimes bigger things are needed too, so don't be afraid to offer, don't be hurt if its turned down and be open to a fresh suggestion...it's not about you after all.
And finally a word for the person needing the support...do accept it , it helps everyone. Also just let go of any hurt caused by the people who don't offer help and instead disappear....they don't have it to give and therefore can't help you. My experience is those who genuinely offer their support more than make up for them so focus on them and move on. Life as we know is way too short......
As many of us will be, I have been both a carer and someone in need of care. There is no doubt both are hard. And I have found it so hard to write this. In part I'm reluctant to offer advice when we are all so different. I don't wish to be prescriptive so here are a couple of things that helped me both times I had treatment for cancer. They may work for you too.
Recently when I was convalescing my son and his partner really helped by coming over and making a meal then staying and sharing it with us. I loved that, they helped us both and we got to enjoy their company too. Absolutely the best of both worlds.
When my children were little and I had cancer for the first time, the offer from friends to take them, to give them a break was so valuable. I could relax knowing they were having fun.I felt less guilty and they got relief from the burden of a sick parent. It helped us all survive a difficult time.
Small things matter remember and sometimes bigger things are needed too, so don't be afraid to offer, don't be hurt if its turned down and be open to a fresh suggestion...it's not about you after all.
And finally a word for the person needing the support...do accept it , it helps everyone. Also just let go of any hurt caused by the people who don't offer help and instead disappear....they don't have it to give and therefore can't help you. My experience is those who genuinely offer their support more than make up for them so focus on them and move on. Life as we know is way too short......
Monday, 8 April 2013
Day 8. Ability to know the dark
Todays challenge was what is the animal that represents your condition, for me of course that's breast cancer.Initially I thought no....no animal can do that. I like animals , none can represent a cancer in my head. But then I thought of a neighbours black cat that terrorises the area and it took me to thinking of a panther. So I looked up what this stunning animal represents in animal symbolism.
The words "symbol of the feminine" were there, "understanding of death" and alongside "cunning and strength" there was "ability to know the dark". Now "beauty and boldness" too were there....but the final words that captured me were "reclaiming ones power."
Panther it is....but the power I reclaim.....for now.
Sunday, 7 April 2013
Day 7. Shocked? You should be.
Today our challenge is to pick out a ridiculous headline about your condition. Lets face it there are many ; hardly a day goes by and we read that broccoli or mushrooms or under-wire bras, under arm deodorant etc etc either prevent or cause cancer. Really?? Please , please stop reporting unsubstantiated, poor quality research that either offer false hope but mostly insults all of our intelligence. Follow reputable sources of information like the Breakthrough Generations Study if you want proper information on research into the causes of breast cancer.
But it's not one of those headlines I have chosen. I have gone for one of the many headlines at the time talking of the "shocking". campaign on breast awareness that I helped to launch last September. The shocking part you see was the advert showed real breasts with signs of cancer. The message being its not only lumps that are cancer. It still astounds me that we are shocked at the image of bare breasts simply because they are ones with cancer and not the page three images we still see in daily newspapers. What is really shocking is that 4,500 women are diagnosed in Scotland every year and still the knowledge of breast awareness was low.
Undoubtedly though, the reporting of the shocking nature of the campaign helped to further it's awareness and the fantastic news is, as a result of the campaign 50% more women went to their GPs with a breast change they were concerned about. I was so pleased to hear it, I'm proud of the small part I played to get the message out to help people be diagnosed early. Its probably one the highlights of my career with Breakthrough Breast Cancer. You can judge yourself whether its shocking or not. I think it's excellent, informative and not frightening. So share it with your family and friends too....shocking or not....it could help save a life. That's good enough for me.
http://www.scotsman.com/the-scotsman/health/elaine-c-smith-fronts-shock-cancer-campaign-1-250580
Saturday, 6 April 2013
Return to sender? Day 6
It's write a letter day for day 6. We could write to our older selves or to our condition.
I have previously written to my younger self and loved that...my most important message i found being enjoy life and don't sweat the small stuff . But writing to my older self paralysed me. Is it tempting providence? Or do I find it hard to visualise myself as an older person....preferring to trust the here and now? I suspect a history of cancer stops you being complacent about the future and that's where I am just now.
So instead it's a letter to my condition...breast cancer.
Dear Cancer
Twice, yes twice you have now come along to disrupt my life. You weren't invited, I'm not even high risk but that didn't stop you. Both times you came when I was least expecting it. Not prepared at all. No full cupboards or freshly laundered life prepared for any guests. No, just muddling along each day and even at times feeling in my prime and there suddenly you were.
Did I at some level invite you without realising? Was life too easy till then? Did I do something to deserve your visit?
Now I know I'm at least fortunate you didn't invade everything-you didn't bring your extended family -and that made it easier to get rid of you. I hope you aren't still squatting somewhere that I don't know about ,ready to sneak back in when again I'm not looking. But I don't know really do I?
Hence this letter. I'm telling you, you are not welcome in my life nor in any of the lives of my family and friends. They are precious and don't want you either.
So can I suggest you find another way to use that impressive ability to reproduce and grow.
Perhaps you could produce energy to heat homes of those who struggle. What about using it to heal those with degenerative disease, replacing those cells that cause such devastation? And if these things are too hard just now surely there is something else. We live in Scotland......you could eat midgies perhaps....no Nobel prizes for that maybe, but believe me we would be grateful.
So I bid you goodbye, you aren't welcome back, go and do something useful so I can wish you well in the future.
Not yours
Audrey
I have previously written to my younger self and loved that...my most important message i found being enjoy life and don't sweat the small stuff . But writing to my older self paralysed me. Is it tempting providence? Or do I find it hard to visualise myself as an older person....preferring to trust the here and now? I suspect a history of cancer stops you being complacent about the future and that's where I am just now.
So instead it's a letter to my condition...breast cancer.
Dear Cancer
Twice, yes twice you have now come along to disrupt my life. You weren't invited, I'm not even high risk but that didn't stop you. Both times you came when I was least expecting it. Not prepared at all. No full cupboards or freshly laundered life prepared for any guests. No, just muddling along each day and even at times feeling in my prime and there suddenly you were.
Did I at some level invite you without realising? Was life too easy till then? Did I do something to deserve your visit?
Now I know I'm at least fortunate you didn't invade everything-you didn't bring your extended family -and that made it easier to get rid of you. I hope you aren't still squatting somewhere that I don't know about ,ready to sneak back in when again I'm not looking. But I don't know really do I?
Hence this letter. I'm telling you, you are not welcome in my life nor in any of the lives of my family and friends. They are precious and don't want you either.
So can I suggest you find another way to use that impressive ability to reproduce and grow.
Perhaps you could produce energy to heat homes of those who struggle. What about using it to heal those with degenerative disease, replacing those cells that cause such devastation? And if these things are too hard just now surely there is something else. We live in Scotland......you could eat midgies perhaps....no Nobel prizes for that maybe, but believe me we would be grateful.
So I bid you goodbye, you aren't welcome back, go and do something useful so I can wish you well in the future.
Not yours
Audrey
Friday, 5 April 2013
The only legacy of cancer would be an enhanced love of life....thats my wish!
Day 5 of the health activist writers month challenge "if I could do anything as a health activist....."we are urged to think big about something we could achieve now.
No restrictions like time or money, strange how hard it is to think like that, how constrained our aspiration can be by the grinding reality. Knowing what stops the aspirations in the here and now, creating almost a learned helplessness. So my fear is that I'm not aspirational enough, that I accept what really should be the unacceptable. Why is that? Perhaps we are naturally a cautious culture, not rebels, more negotiators. Or is that just me?
That said ...my aspiration ultimately is that no one dies before their time from breast cancer; that either we can prevent it ever developing (really the fundamental goal surely) or through personalised diagnosis and treatment we minimise side effects and maximise impact to save lives...not just quantity of years but quality of years too.
So how do we achieve this?
No restrictions like time or money, strange how hard it is to think like that, how constrained our aspiration can be by the grinding reality. Knowing what stops the aspirations in the here and now, creating almost a learned helplessness. So my fear is that I'm not aspirational enough, that I accept what really should be the unacceptable. Why is that? Perhaps we are naturally a cautious culture, not rebels, more negotiators. Or is that just me?
That said ...my aspiration ultimately is that no one dies before their time from breast cancer; that either we can prevent it ever developing (really the fundamental goal surely) or through personalised diagnosis and treatment we minimise side effects and maximise impact to save lives...not just quantity of years but quality of years too.
So how do we achieve this?
- charities, government and universities collaborate through research not just nationally, but globally to share knowledge, build momentum...make miracles happen.
- drug companies take all drugs to market(not just the big profit options) that can effect change and offer life and...at prices where governments and health services can make them accessible to those who will benefit.
- person-centred care is the norm,people are genuine partners in their care and quality of life is prioritised alongside quantity of life so that people survive treatment with dignity and experience loving kindness.
- once treatment is passed we understand how to and support people to live out their lives with health and well-being intact, the only legacy of cancer being an enhanced love of life and valuing of time with those you love.
Thursday, 4 April 2013
A resource for breast cancer.....day 4
Today's task is to create a resource for the newly diagnosed and I had a
slight heart sink moment! My thought was this is huge. Also I felt conflicted as I know my style is to collect information and
try to suffocate the cancer with the weight of my knowledge ...and
that's exhausting. But I remember getting two leaflets when I was
diagnosed the first time and they had photos of white haired women on
the front. I thought long and hard about ripping them up and getting rid
of them out of the tenth floor window of my hospital room. I didn't........ but
that's how much I hated them.
So it's such a personal thing and timing is everything. Perhaps our best resource is a key contact like a well informed breast care nurse who understands you enough to sign post you to the right information at the right time. And someone who understands the important role that charities play in providing support and information too.
Breakthrough Breast Cancer information produces excellent information not only on treatment but also helps you understand the relevance of family history as well as facts on prevention and early detection.
http://www.breakthrough.org.uk/breast_cancer/family_history/new_guide_on_family.html
http://www.breakthrough.org.uk/document.rm?id=1924
http://www.breakthrough.org.uk/document.rm?id=1976
I was until two months ago a director with them so I admit bias! I have borrowed a paragraph I wrote in my previous role as Director for Scotland of Breakthrough Breast Cancer which is the introduction to the Best Treatment Guidelines for Scotland (above). The words I believe are very relevant to this task. They may be about the guidelines in Scotland but as a principle they are relevant anywhere.
"Your breast care team can recommend the best treatment options for you based on professional guidelines, their own professional experience, your medical history and the specific details of your breast cancer. However, it is you who is best placed to consider how your own particular circumstances and personal preferences might influence decisions too. Therefore, it is best for doctors, nurses and patients to work together to decide on the best way forward.
My recent breast cancer diagnosis has reinforced for me the importance of having the right information at the right time. Having access to a publication like this best treatment guide and having a supportive and caring breast care team meant I felt confident and able to make the right decisions for me. I hope this can be the situation for all people affected by breast cancer in Scotland.
Having been diagnosed with breast cancer for the first time about 18 years ago and for the second time more recently, I can see how treatment has changed over time in so many ways. Previously, women had to settle for fewer options and live with the consequences of that treatment. It’s fantastic that, as Scotland progresses to more personalised care and treatment, those options are better and more targeted to each person’s individual needs.
Everyone is different and the treatment you are offered should be tailored to you. Although adjustments may be needed depending on your local services, you should expect your treatment to follow the general direction set out here. If it does not, we suggest you discuss this with your GP or breast care team. There may be a good reason for this, but you have the right to question your care and to receive an explanation that you understand.
Everyone in Scotland should have access to the best treatment and to information and support to help them to make the right decision for them. They deserve no less. I hope that, through this publication, we are helping to ensure that happens."
The following sites also contain some valuable support and information not just on clinical information but importantly financial advice and guidance too.
Breast Cancer Care provide support and information from diagnosis to living with cancer.
http://www.breastcancercare.org.uk/
Maggies are across Scotland at hospital sites to provide support and information for people affected by cancer.
http://www.maggiescentres.org/
Macmillan for information, including financial information and advice.
http://m.macmillan.org.uk/cancer-information
BCSM in US new website and weekly tweet chat with the awesome breast cancer advocates in the US. Watch and learn!
http://www.bcsm.info/
Do read @JBBC heartful blog roundup connects the wise community, the experts of the lived experience of breast cancer across the globe. Simply outstanding.
http://journeyingbeyondbreastcancer.com/
The #BCCEU tweet chat is on Facebook too. Monthly tweet chats which aim to build knowledge and confidence of people affected by breast cancer in Europe. I support Marie of @JBBC in this and we would love your company every first Thursday of each month.
So do look them up when the times right for you....and if its not that's ok. Maybe your family or friends can help ? Or feel free to ignore...it's your path to walk....just know you aren't alone.
So it's such a personal thing and timing is everything. Perhaps our best resource is a key contact like a well informed breast care nurse who understands you enough to sign post you to the right information at the right time. And someone who understands the important role that charities play in providing support and information too.
Breakthrough Breast Cancer information produces excellent information not only on treatment but also helps you understand the relevance of family history as well as facts on prevention and early detection.
http://www.breakthrough.org.uk/breast_cancer/family_history/new_guide_on_family.html
http://www.breakthrough.org.uk/document.rm?id=1924
http://www.breakthrough.org.uk/document.rm?id=1976
I was until two months ago a director with them so I admit bias! I have borrowed a paragraph I wrote in my previous role as Director for Scotland of Breakthrough Breast Cancer which is the introduction to the Best Treatment Guidelines for Scotland (above). The words I believe are very relevant to this task. They may be about the guidelines in Scotland but as a principle they are relevant anywhere.
"Your breast care team can recommend the best treatment options for you based on professional guidelines, their own professional experience, your medical history and the specific details of your breast cancer. However, it is you who is best placed to consider how your own particular circumstances and personal preferences might influence decisions too. Therefore, it is best for doctors, nurses and patients to work together to decide on the best way forward.
My recent breast cancer diagnosis has reinforced for me the importance of having the right information at the right time. Having access to a publication like this best treatment guide and having a supportive and caring breast care team meant I felt confident and able to make the right decisions for me. I hope this can be the situation for all people affected by breast cancer in Scotland.
Having been diagnosed with breast cancer for the first time about 18 years ago and for the second time more recently, I can see how treatment has changed over time in so many ways. Previously, women had to settle for fewer options and live with the consequences of that treatment. It’s fantastic that, as Scotland progresses to more personalised care and treatment, those options are better and more targeted to each person’s individual needs.
Everyone is different and the treatment you are offered should be tailored to you. Although adjustments may be needed depending on your local services, you should expect your treatment to follow the general direction set out here. If it does not, we suggest you discuss this with your GP or breast care team. There may be a good reason for this, but you have the right to question your care and to receive an explanation that you understand.
Everyone in Scotland should have access to the best treatment and to information and support to help them to make the right decision for them. They deserve no less. I hope that, through this publication, we are helping to ensure that happens."
The following sites also contain some valuable support and information not just on clinical information but importantly financial advice and guidance too.
Breast Cancer Care provide support and information from diagnosis to living with cancer.
http://www.breastcancercare.org.uk/
Maggies are across Scotland at hospital sites to provide support and information for people affected by cancer.
http://www.maggiescentres.org/
Macmillan for information, including financial information and advice.
http://m.macmillan.org.uk/cancer-information
BCSM in US new website and weekly tweet chat with the awesome breast cancer advocates in the US. Watch and learn!
http://www.bcsm.info/
Do read @JBBC heartful blog roundup connects the wise community, the experts of the lived experience of breast cancer across the globe. Simply outstanding.
http://journeyingbeyondbreastcancer.com/
The #BCCEU tweet chat is on Facebook too. Monthly tweet chats which aim to build knowledge and confidence of people affected by breast cancer in Europe. I support Marie of @JBBC in this and we would love your company every first Thursday of each month.
So do look them up when the times right for you....and if its not that's ok. Maybe your family or friends can help ? Or feel free to ignore...it's your path to walk....just know you aren't alone.
Wednesday, 3 April 2013
Day 3, my image for breast cancer
An image that represents your condition. That's our challenge today, the third day of the health activists writers challenge. And an image I kept thinking of was a mountain, now not the pretty and pert Paps of Jura ( yes they are real and on the rugged and remote Isle of Jura). But an image that suggests a long slow endless climb, with glimpses of wonder and beauty but with danger at its core.
Buachaille Etive Mor in Glencoe.
Tuesday, 2 April 2013
Day 2. For the newly diagnosed...my thoughts...
Let me introduce myself to people new to breast cancer. On day two of
the health activists challenge we are charged to share with you some
posts that may help those first diagnosed......in my situation with
breast cancer.
1. My first blog was to try to find a boundary between Audrey , work and breast cancer. Boundaries help you to retain yourself in the whole madness of a cancer diagnosis. Writing has helped me process what I was experiencing in the moment, that I do know. I described my self as a mother, daughter, wife, director of a Breast Cancer charity etc to explain that I was all those things and cancer would impact on it all, not just my job. I remember that my nieces told me in no uncertain terms to remember I was an Aunty too. You see your cancer affects so many around you.
2. But you can't take responsibility for them all.........and you can't take their pain away.
3. But you can let them help you. People commented on my courage ( I wasn't I was getting through and trying so hard to contain it) but what is courage? Don't be trapped by "being courageous"... Shout and cry when you need to and ask the people you trust to help.
4. Take time to make decisions, talk to the people who will help you, read the things that make sense for you. When we hear cancer we often feel we must act in haste but usually there is time to think and talk in through. Try not to make a decision too quickly, with most breast cancers there will be some choices you can have, good teams will help you make the decision that's right for you.
5. Be kind to yourself and rest when you can.....don't apply for super human status, just do the things that help you savour this life you have and celebrate every good part along the way. And remember this stage will pass in time.......
1. My first blog was to try to find a boundary between Audrey , work and breast cancer. Boundaries help you to retain yourself in the whole madness of a cancer diagnosis. Writing has helped me process what I was experiencing in the moment, that I do know. I described my self as a mother, daughter, wife, director of a Breast Cancer charity etc to explain that I was all those things and cancer would impact on it all, not just my job. I remember that my nieces told me in no uncertain terms to remember I was an Aunty too. You see your cancer affects so many around you.
2. But you can't take responsibility for them all.........and you can't take their pain away.
3. But you can let them help you. People commented on my courage ( I wasn't I was getting through and trying so hard to contain it) but what is courage? Don't be trapped by "being courageous"... Shout and cry when you need to and ask the people you trust to help.
4. Take time to make decisions, talk to the people who will help you, read the things that make sense for you. When we hear cancer we often feel we must act in haste but usually there is time to think and talk in through. Try not to make a decision too quickly, with most breast cancers there will be some choices you can have, good teams will help you make the decision that's right for you.
5. Be kind to yourself and rest when you can.....don't apply for super human status, just do the things that help you savour this life you have and celebrate every good part along the way. And remember this stage will pass in time.......
Monday, 1 April 2013
On anniversaries....
The health activists month writers challenge popped in my in box today
so I thought I would join. It seemed appropriate as its an anniversary
for me and I wanted to write about it.
It's two years since I was diagnosed with breast cancer again..yes again. It was on Easter Monday actually, so two years ago that was a different date. But it was that day when my soon to be surgeon phoned to say yes, it's cancer but its very early and treatable. Great news its early,I thought , then got on with the job of packing it in to nice boxes to deal with and hopefully control.
I knew the ropes after all. I knew how it worked, I would decide what assaults on my body I would need to deal with. I knew that my early diagnosis meant relatively light touch treatment. I knew I would need time off work but that was ok within limits. I knew that some people I thought I could rely on would disappear . I knew that I could be honest with my now adult children and minimise the impact. I knew we would get through it and come out the other end. Yes with the uncertainty of return, but that had always been a background feature in my life. I knew I was in control, right?Are you laughing yet at my naïveté ....well smiling wryly if you either know me or have travelled this road yourself maybe.
So ok the truth is there in part...the previous conviction gave me a helpful understanding of the routine, the roller coaster emotions, the fear, the savouring of life. But like other kinds of previous, the sentence wasn't in isolation, the physical and emotional impact was cumulative in a strange way.
So what did I learn instead. Well the toll has been harder than I thought. My energies have yet to return to their previous state, my emotions are still fragile at times, the likelihood of recurrence more at the forefront of my mind. I haven't been able to stop the impact on others but they are ok if I am. I have given up my job as a director of Breakthrough Breast Cancer for many reasons....but it's helpful not to have breast cancer omnipresent in my life and not defining me. And this time I have responded differently to the cancer. I have not put my knickers on top of my tights to prove my super woman status and prove that the cancer hasn't affected me.
No this time I have thought how do I want to live........and how I want to live is focusing on what gives me joy, plays to my strengths in my career, gives my time with those I love and time to smell the roses and write too. So this is the point I say I'm glad to the cancer for helping me find this place.......?
Emmmm....that would be a big fat no!
I am immensely grateful to have choices to make a difference in my career and enable others to as well. I am benefitting from having a better balance in my life ( not there yet but it's unfolding....). But frankly I would rather have got there myself and made the decision with the wellbeing to fully enjoy it.
So two years on I look back and have wry smile at my thought I could control it so it didn't have an impact.... And acknowledging the sadness for what i have lost. But I'm so glad I'm here embarking on an exciting and enjoyable next stage in my life and career. Thanks for travelling with me at times and a heartfelt thanks to those of you who have supported me and cheered me on.
Its Easter Monday so as well as an anniversary for me its a message of hope is it not. So I am sharing this beautiful image too as a reminder for all of us whatever our beliefs.
The health activists challenge is to write a post everyday in April so I will see how I do. But I decided to join as I rediscovered how much I enjoy writing since my diagnosis, and it seemed a way to celebrate the good too....Wish me luck!
It's two years since I was diagnosed with breast cancer again..yes again. It was on Easter Monday actually, so two years ago that was a different date. But it was that day when my soon to be surgeon phoned to say yes, it's cancer but its very early and treatable. Great news its early,I thought , then got on with the job of packing it in to nice boxes to deal with and hopefully control.
I knew the ropes after all. I knew how it worked, I would decide what assaults on my body I would need to deal with. I knew that my early diagnosis meant relatively light touch treatment. I knew I would need time off work but that was ok within limits. I knew that some people I thought I could rely on would disappear . I knew that I could be honest with my now adult children and minimise the impact. I knew we would get through it and come out the other end. Yes with the uncertainty of return, but that had always been a background feature in my life. I knew I was in control, right?Are you laughing yet at my naïveté ....well smiling wryly if you either know me or have travelled this road yourself maybe.
So ok the truth is there in part...the previous conviction gave me a helpful understanding of the routine, the roller coaster emotions, the fear, the savouring of life. But like other kinds of previous, the sentence wasn't in isolation, the physical and emotional impact was cumulative in a strange way.
So what did I learn instead. Well the toll has been harder than I thought. My energies have yet to return to their previous state, my emotions are still fragile at times, the likelihood of recurrence more at the forefront of my mind. I haven't been able to stop the impact on others but they are ok if I am. I have given up my job as a director of Breakthrough Breast Cancer for many reasons....but it's helpful not to have breast cancer omnipresent in my life and not defining me. And this time I have responded differently to the cancer. I have not put my knickers on top of my tights to prove my super woman status and prove that the cancer hasn't affected me.
No this time I have thought how do I want to live........and how I want to live is focusing on what gives me joy, plays to my strengths in my career, gives my time with those I love and time to smell the roses and write too. So this is the point I say I'm glad to the cancer for helping me find this place.......?
Emmmm....that would be a big fat no!
I am immensely grateful to have choices to make a difference in my career and enable others to as well. I am benefitting from having a better balance in my life ( not there yet but it's unfolding....). But frankly I would rather have got there myself and made the decision with the wellbeing to fully enjoy it.
So two years on I look back and have wry smile at my thought I could control it so it didn't have an impact.... And acknowledging the sadness for what i have lost. But I'm so glad I'm here embarking on an exciting and enjoyable next stage in my life and career. Thanks for travelling with me at times and a heartfelt thanks to those of you who have supported me and cheered me on.
Its Easter Monday so as well as an anniversary for me its a message of hope is it not. So I am sharing this beautiful image too as a reminder for all of us whatever our beliefs.
The health activists challenge is to write a post everyday in April so I will see how I do. But I decided to join as I rediscovered how much I enjoy writing since my diagnosis, and it seemed a way to celebrate the good too....Wish me luck!
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Rollercoasters and life with cancer
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