Truth and sustaining the soul...

Stabilising the soul, that's what I have just read from my notes from the Windsor leadership dialogue. Wow! My yearly trip to Windsor is one of my attempts to do that in a busy challenging life and this year has truly been that .I was armed with thoughts of talking about how my blog had helped my authenticity as a leader. But in fact I said little about it. Reactions to  my story remind me that it's hard sometimes to hear about some of the things I have experienced and the work I do. I have become used to talking about it but I need to be mindful of the impact on others too. 

And  since then I had to see my GP with a chest infection and asthma so bad it's put me in bed and led to a tearful episode not at all expected during the consultation! I think the sharing pays a price as well maybe? I have done a lot of travelling and long hours too....I need to get back to pacing myself. Ah well it's life long learning is it not?

What about telling the truth when it comes to cancer? Can we have too much truth? I can't hide from it now in my job and generally my approach is to analyse the far end of...well you know where I am going. But at times I have had a fact too many. First time around I completely blanked the fact that I may need surgery for a third time if the margins of the tumour weren't clear. Fortunately I didn't need it but I chose not to remember that one. I know many people experience similar amnesia. Sometimes we need to not have too much truth. How do you eat an elephant? One bite of the breast at a time!


When I started work at Breakthrough Breast CancerI learned for the first time how common late recurrence was becoming. This came as a shock as I guess I thought I was out of the woods for the first cancer. And of course I have recently had a new cancer.I have tried to push aside thoughts of recurrence knowing both times to be early stage but at times like this when I am unwell and vulnerable they crowd in...hence the tears. Only human after all....

One of the things we touched on in Windsor was developing our meta narrative
-telling our truth, our own story to serve our work and mission. It resonated for me and also relates to the invitation a blogger with Britmums put out as well. For 90 bloggers to blog in 90 words about special women to them in support of Breakthrough Breast Cancer and the fundraising work with Pink Bingo (there are 90 balls in play in Bingo hence the link). You find out more on Qhttp://kateonthinice.wordpress.com/2012/01/26/i-am-looking-for-90-bloggers-to-support-breakthrough-breast-cancer/

And yet another blogger did a fabulous and funny piece on our TLC work. Shows how well humour can open doors to challenging subjects too. You can read it here on  -How to feel a right tit AKA be breast aware t.co/LA5kaZnK via @Ellen27. 

It's World Cancer day tomorrow I believe. I had rather mixed emotions -no not mixed just negative if truth be told-as its also my birthday. (No not telling you!) Seemed a bleeping irony if you get my drift and not a connection I want to have with my birthday at all.  Considered re naming it F... Cancer day! and perhaps will hold on to that approach over the weekend.

Reasons to be cheerful are of course it's my birthday and I am subtracting and lying from now on too. Family are visiting and if I can drag my sorry self there we are going out for dinner together. My favourite times as you know. 
Perhaps this one shouldn't cheer me but this week we have also been giggling about fat cats. No not the ones that have lost knighthoods . Its Koshka who as a result of preferring a hibernation state is getting a bit of a belly! His bed is by the radiator and he can watch the TV from there. Earthflight is outright winner but if he starts on the football too I may have to leave home! Borgen remains my top TV tip. Wonder if I could pull off the tight  Mac look ,
like Brigitte?

And finally last words from a poem shared in Windsor. It really moved me...It's title is  lost. We touched several times on the dark nights of the soul in our discussions. I know I have had them and still do at times. Maybe this will give you comfort in your own dark nights.

Lost

Stand still. 
The trees ahead and the bushes beside you Are not lost. 
Wherever you are is called Here, 
And you must treat it as a powerful stranger, 
Must ask permission to know it and be known. 
The forest breathes. Listen. It answers, 
I have made this place around you, 
If you leave it you may come back again, saying Here.

No two trees are the same to Raven. 
No two branches are the same to Wren. 
If what a tree or a bush does is lost on you, 
You are surely lost. Stand still. 
The forest knows Where you are. 
You must let it find you.

An old Native American elder story rendered into modern English by David Wagoner-My thanks to Stephen for sharing it.

For a' that.....

I was reminiscing this weekend with friends. We recalled a colleague. A GP of senior years who was known for his special combination of forthrightness and, I think I would call it, love. The patients certainly loved him- even when told as one man was , on one occasion - what he needed was an Exocet missile up his backside. We could all see the truth in it, including the man himself...it's just that most of us wouldn't have dared utter it! He could, because he also was deeply compassionate , known to pass on, always discretely ,some notes in an envelope from his own wallet when he saw moving evidence of need. When will we see his like again?
And I also remember him with a great twinkle in his eye....like when he asked how many bottles there were in a unit! When I was interviewed for a job as a nursing sister with them, on noticing that I had a degree ( not typical at that time in nursing), he sat  back in his chair and said did you learn anything? Answer that in an interview! Well a bit , I quipped.....but looking back its made me think. Where have I learned most?

Well of course I learned lots of facts at university and many them I have even applied from time to time. But maybe most importantly I learned to love learning and that love remains. I also learned to question, again not typical,of nursing at that time, and it has served me well. One of the reasons I was drawn to my work in the voluntary sector I have often thought.

But this blog in particular is the reminder that there is learning in the personal experience too. This blog is mostly about my experience of course and we are all unique. The Breakthrough Service Pledge however does demonstrate the value of using that experience in a planned way to create change and drive improvement.And seeing it in action recently really reinforced for me the power of patient feedback to deliver an important message that cannot be ignored, even when it has been ignored before. It was spine tingling to see attitudes challenged and shift before your eyes.

Since Breakthrough Breast Cancer being in Scotland we have been able to build on the success of the service pledge in England and Wales and  I am so pleased we are now working with all the cancer networks in Scotland to roll it out. And even going back to some units we worked with earlier to recognise and celebrate the changes now in progress. The pledge has real potential for achieving change and now we are looking at other ways it might achieve our objectives...very exciting opportunities to explore in the months ahead. If only we could clone ourselves...at no cost!

This week I was reminded again how much more there is to do and how lucky I have been. Not just recently but last time too. Mid week I picked up a letter addressed to me. It contained a cheque written to Breakthrough. This was in memory of a forty two year old woman who died just after Christmas. She leaves a two year old to grow up without their mother. I had to keep walking through the office to the privacy of my office and a quiet bubble......and reflect on how necessary our work is.

At the end of this challenging week my reason to be cheerful is its my two days in Windsor, as part of the Windsor leadership dialogue. We are based in St George's House dedicated to nurturing wisdom. The focus of this years dialogue is creating authentic leadership. Interesting theme for me as i have used my blog to increase my authentic communication within my role. And its been good for me personally i know but what about my work?Challenging dialogue in the grounds of Windsor Castle is a heady mix of centuries of history and a the shared experience and wisdom from an eclectic mix of participants that is profoundly humbling. Not sure how I have snuck in but it's a highlight of my year now.Thankfully now I know to pack warm jammies and a wooly vest! Not glamorous but very necessary. Can't wait.

This week after utilising a Burns poem in an unforgivable way I have decided to make amends and quote a piece to reinforce the power of being your own authentic self to finish! Its from A Mans a Man for A That- I recommend the whole poem but the part I wanted to use is:


The honest man, though e'er sae poor
Is king o' men for a'that

Tae a breast!

Apologies to the bard
I wrote the first few verses of the poem below.last year. It seemed timely to update them this being Burns  birthday and also my new plan in place. I saw the surgeons yesterday. We agreed that I did not need to proceed for a mastectomy at this stage. But three strikes and I am out.....There is no answer to that except phew!
Looking the complexity of my situation means my risk of recurrence is complex. And I have lived with risk for sometime now. Also I know recovery after mastectomy and reconstruction is a major business. There is risk in that too. I know without doubt I could not contemplate a mastectomy without reconstruction. Thank goodness these options are available now. I know I would feel very different without that option either now or in the future.
So I have decided on something less impact full but will help me further on the road to recovery. I hope it stops me having a lump in throat as I walk past nice lingerie departments or contemplating a lifetime of prosthesis wearing. Or the other daily reminders which are plentiful.
A small price for a life restored I know. But I am glad and grateful it can feel more normal than this in the future. So it's just a short one today to update you and pay my own cringe making homage to the bard on his day! I suspect he was aye one to appreciate the subject matter! Enjoy.

Tae a breast!

Wee sad and broken tim'rous breast, 
O, what a panic was in my head! 
I need na worried awa sae hasty, 
Wi' fear and fright! 
I wad be laith to lose thee 
Withoot a fight!

But breast, I tried before wi’ sma’ gain 
In proving foresight may be vain; 
The best-laid schemes o' mice an' men 
Gang aft agley, 
An' lea'e me back to face more pain, 
And chance o’ more! 

And sae to clinics I maun go
And nae new cancer to show!
Decision time wis loomin
Wid staying as is stop me from bloomin
Aye the answer had to be and sae
To the surgeon I maun gae

Still I am blest, we must agree; 
Only the surgeons knife will toucheth me: 
And och! I must cast my e'e, 
On hopes for prospects cheer! 
An' forward, tho' I canna see, 
I guess an' try no tae fear!

Twitter obsession? Moi?

If I admit to a slightly obsessive nature those who know me will nod and sigh in agreement. Now obsessions aren’t all bad, its some of that drive that keeps me focussed on what I want to achieve in my work with Breakthrough Breast cancer and keeps me going when I am feeling the pain of whatever that days challenge is. So far so good…but…

I would admit to a small social media obsession tendency! And social media obsessions can be very irritating to those not part of the conversation. I see that and am working on it. Honest. My favourite medium is twitter, by a country mile. That immediate ability to connect with others is powerful; be that around a shared enjoyment of something, a joke or sending important health information. It does it all.

(My favourite joke this week on twitter came from Queen UK -no not the real one - when on the subject of settling the referendum challenge between the Scottish and Westminster Government the suggestion was to get two teams on Dancing on Ice to battle it out…..well I think it was a joke?)

Many bloggers I follow have been debating the important subjects in our society now…from the politics just referred to, to mental health issues and women’s health too. It was one on women’s health that encouraged me to share Breakthrough Breast Cancer's award winning TLC and iBreastcheck information on twitter.It’s a free app you can download from iTunes and you can find it on http://bit.ly/tVT576. We had shared it with the Minister for Public health that afternoon.Mentioning that on twitter lead in turn to others interest. And in that sharing many others have retweeted it, sharing the potentially life saving information with lots of interested people in such a simple and cost effective way.

The ethos of twitter is to be generous in your sharing and thanking, there is something nicely old fashioned about that and forward thinking all at the same time. I do love the way it connects across boundaries of whatever variety. Sometimes it also connects when illness or isolation makes it hard to do in a physical sense and I suspect there are more ways that it can meet needs we could still explore. Combine Foursquare and twitter and you have a potential network of support to cheer difficult times. Mmmmm….

It also connects people who want to do things. The other morning someone suggested a ready made network could do a calendar (remember Calendar Girls..yes that’s right)and my immediate thought was, well there’s one I wont be volunteering for. Unless it’s the misshapen variety that’s the order of the day of course! And it reminded me that in a few days I make a decision about what to do next around reconstruction. I remain rather anxious and uncertain about this. I still go around in circles in my head on what to do. So frustrating. Part of me just wants someone to tell me but I do know it needs to be my decision alone. Perhaps if they tell me and I disagree I will know my decision then. Cussed as well as obsessive eh? At heart I know I want to do something, I just don’t want to go back to feeling post op and vulnerable again. But like love and marriage you cant have one without the other. Hey ho. Wish me luck.

Reasons to be cheerful are plentiful. I had a lovely family weekend. I then spent time with friends that made the first journey to London in the New Year so much more enjoyable and special. Also I discovered Borgen, the new Danish political thriller. Gripping stuff and moving too. Perfect. And to top it all the Guardian shared on twitter a great article about Leonard Cohen, including a new track called Darkness (yes yes I know!) and an old track of Chelsea Hotel from the 70’s.If you too are a fan, check it out. Friends are arriving soon. Good times to look forward to. I hope you have to.

Reasons to be grateful.

Well it's nearly Friday and I am still standing!Mid winter this far North can be a challenge but the sun has shone this week and those clear skies seemed to herald spring. And the media has shown daffodils blooming as far north as Aberdeenshire. But it's still early so keep the shorts in the wardrobe still, it's Scotland after all.

And don't we know it's Scotland with the Independence debate kicking off in dramatic style? Each side claiming points and my head is spinning already. I am sure I am not alone. What is most important is that the key issues get discussed in this debate, like health, welfare, housing, jobs and so on , all the things that ,when the chips are down , really matter. And that when we vote, we understand in what context would we be a healthier and happier nation, taking account of all the things that contribute to that.

And this week has brought sharply into focus for me what truly matters. A family I am very close to have suffered an awful  loss through a road traffic accident. No time to say  the good bye's or I love you's. All the unsaids going round in their head instead. That is always so hard for those left behind.

When I wrote of Angie's loss ,I described how she had organised her funeral down to the exact detail. But the price she paid for that was many years of knowing that her time was limited and of harsh,and exhausting treatment. Not much of a trade off really but at least you can leave messages for those you love behind. And lets face it the loss of a precious  life before their rightful time is always a tragedy.

It made me think that I haven't thought of my funeral or really my bucket list-ever the optimist you see. I guess the music would be a bit of Lenoard Cohen ( "If it be your Will" maybe?) perhaps some Robert Burns and I have regularly said I want Robert Plant's "Addicted to Love". A rather eclectic mix-something for everyone I like to think ;-)

But honestly my bucket list is simply spending more time with the people I care about. If that's never further than my dining room table I won't complain. I remember reading a quote from a GP a few years ago that said "I have never met anyone on their death bed who prayed for more hours in the office". Maybe that's the one I need to remember as jobs like mine will never be complete-but on the other hand they offer huge compensation knowing the difference you have the potential to make.

So this week I have contributed to discussions on detecting cancer early and on utilising the Breakthrough Service Pledge to improve not only breast cancer services but also in a wider health care context in Scotland. I also worked with a great group of women who want to get together to raise serious money for Breakthrough Breast Cancer, especially for our research. I love my job! I meet such committed people who understand the impact breast cancer has on so many woman, men and their families. It's an honour to work with such commitment.

So its reasons to be grateful this week, i think. It's been an emotional week to see people I care about hurting so much. We shared happier times with them too and I'm grateful for that, the price of the tears after all. So I wish you all happy times this week and also to reflect and value how precious they are. I certainly will.

Big Gail and some TLC!

January got off to a challenging start here in Scotland with a hurricane force wind. In true black humour Scottish stye , a suitable name was being created by the twitterati hereabouts. Hurricane Big Gail was my favourite...suitably threatening and I thought the kind of person I would have been frightened by at school! And a big gale it was ,blowing trees, chimney pots, walls and parts of buildings across the central belt. So no snow to speak of but roll on summer none the less.

In spite of all I feel brighter than I did before I had the break. A reminder that I need to ensure I have regular good breaks this year so I can fully recover from last year and also recover properly from my surgery yet to come. Last time I had breast cancer I do remember longing for a break about four months after my treatment had finished. We went to Paris and as I dragged my weary self around the wonders of that beautiful city I felt a real failure. Even my favourite Musee Rodin didn't work its magic. I got back to,work and crashed......I just couldn't contemplate how I could carry on. I was done and fortunately my doctor saw that and signed me off. I took only a few weeks off but it allowed me to lift my head up and see a way through again. I can still remember how it felt facing each week wondering if I could keep going till the end of the week. It was my turning point and after that i steadily improved. Sadly the trip to Paris could not be retrieved but the mojo was.

But that experience and my recent decline as I needed a break made me have concern about the proposed welfare reforms. Treatment for cancer is often hugely debilitating and exhausting as well as a traumatic psychological blow to recover from. Benefit systems and employers need to be responsive and sensitive to that. Most people want to work and indeed that return to work will often be a symbolic positive step but not everyone will be well enough and their strength and situation will vary. Our welfare system needs to reflect individual difference and need.

This week I spoke to an old friend after some time. She had seen an article about me and it led us to talk about her own mother. She was diagnosed with breast cancer when my friend had just had her first child. After several years treatment she died. Her treatment was full on, including a radical mastectomy, several rounds of chemotherapy and radiotherapy. She was also disabled by lymphoedema that stopped her doing even ordinary every day tasks. A really sad memory for her daughter. She told me her Mum has once said that she wished she had never found the lump and therefore had been spared treatment as it hadn't led to a longer life. How hard that must have been to hear? And so it had made her daughter question whether she should go for breast screening. She bravely and wisely decided to go ahead. Happily all was well.

 The reason Breakthrough focuses on early diagnosis is that that is still the best predictor of a good outcome. We therefore developed our award winning TLC campaign and our iBreast check to help women be breast aware and know what to look for. You can find details on our web site www.breakthrough.org.uk  and download the ibreastcheck free from itunes. This year we are hoping the detect cancer early campaign  in Scotland will ensure that more people are diagnosed earlier and therefore have better outcomes as a result. We will of course work where we can to support it's success.

 So reasons to be cheerful are that i am back to work and have really interesting projects to get involved with . We survived Big Gail and are off to see family next weekend. We are planning a holiday later in the year and a little bird told me Vincent and Flavia have a Midnight Tango tour coming to Edinburgh. Lots to look forward to. But first I need to see the surgeon to make my plans. Gulp!

 
 

For Angie

I wanted to do a special blog today for a fabulous woman who died peacefully  just before Christmas. She was diagnosed 13 years ago with breast cancer and her last few years were a marathon of cruel symptoms, frightening diagnostic tests, worrying waits for results and ,lets be honest, awful treatments. She faced all of that with positivity, immense courage and 
startling lack of self pity.

We first met her when she indicated her desire to support our work in life saving research and in campaigning for a better future for people like her. She met with the team in Breakthrough Breast Cancer in Scotland and told her story. They were deeply moved by her courage in the face of such a devastating experience and uncertain future. She agreed to talk at our first Changing Breast Cancer event. She told her story calmly and bravely, catching with emotion especially when talking of her children, but never inviting our sympathy-just wanting us all present to understand why it's so important to change things for people like her in the future. A standing ovation said it all.

Later that day we all attended a reception in the Scottish Parliament. Angie was delighted to meet the Cabinet Secretary for Health and Wellbeing , Nicola Sturgeon that day as well as her own MSP , Malcolm Chisholm. The photographer captured some lovely moments for her and for us. In particular I recall an exchange about shoes ,a shared passion of Angie and Nicola too I suspect! -my own fab pink sandals having stimulated the discussion on that occasion. Her sense of fun and enjoyment in life so evident that whole day. I am glad we were able to give her the platform that day.....I will always remember it.

So today watching as her coffin arrived, a splendid pink one with fabulous shoes adorning the side, I thought , well done that girl. Going out with style indeed. The service was rightly a celebration of her life. She didn't waste a moment of it and  that should always be celebrated.  She had in earlier years done a trek in the Himalaya for Maggie's Centre who had been very helpful to her . And St. Columba's Hospice too was honoured for the great support she and her family had had from  them over several years.  

She had planned all her funeral including the music and she arrived to Circle of Life and we left to Everybody Hurts. Not a hanky was spared. But perhaps the moment with the biggest impact for us was when we heard her answer to the question- are you frightened? Her answer was -after living with this awful disease for so many years nothing on this earth could scare me now. I am swallowing hard as a write this, glad she is now free of pain and distress and with a hardened resolve to do all I can to breakthrough breast cancer.