Loneliness and the long distance cancer survivor....

A promise of spring?

Loneliness: it's the word that's been in my head this week. Why? Well a few reasons really. One of  them no doubt my worry about that transition to self employment might mean a loss of being part of a team , no water cooler conversations, no deconstructing the latest film or TV show. No one to tell the weekend tales to.. But it's been OK, avoiding distraction has probably been my greater risk. And twitter conversations about love shacks ( don't ask) and such like keep me linked in!

But what's clear is that it's a very real issue for many. Loneliness has a huge impact on health, affecting survival after major illness like cancer, indeed having the same impact on health as 15 cigarettes a day. Staggering, isn't it?
And of course illness itself can be so isolating , particularly chronic pain or disability making many things so difficult; dementia isolating those people from the world that is increasingly scary, cancer treatments destroying health and well being for some time, depression causing withdrawal from the world. Is it inevitable then that this happens, that people become so isolated and lonely? Well , no I don't think it is.

Just this week I read of a community that has been developed to have an ethos and practice of mutual support ,aimed at reducing social isolation. Investing in those very communities assets to increase social cohesion and support simple kindness. I also saw the launch of a dementia friends initiative to train members of communities about how to support people with dementia in their communities , fostering independence and connection for as long as possible.

We learned too that those living with cancer are more isolated than others. Their illness and maybe their life expectancy separating them from the wider world.  The message from  a cancer charity who were campaigning on this was, reach out and look out for people being treated for cancer. Loneliness will compound their issues, worsen the pain both physical and mental. That's so true for many who suffer with their conditions long term.

Of course there are many organisations large and small who offer support. I found the warmth and support and meditative space from my local Maggies centre an oasis in the bleak landscape that is caused by cancer. The self management fund funded by the Scottish Government and , in a fine partnership, created and managed by The Health and Social Care Alliance is an essential creative impetus for many groups supporting people across Scotland. Groups  like the Pink Ladies of Midlothian who have reached out to women whose lives have been scarred by depression and other issues . Through their kindness, encouragement and belief they have changed lives for the better. For a small investment lives are turned around, the hand of welcome when people are willing to reach out , delivers so much in return.

I could go on but you hear my point I'm sure, loneliness isn't inevitable necessarily but it will be if we don't act to change things and turn around the direction of travel . After all ........it might be us one day.

I've been a secret shopper again this week in the NHS and once more I was impressed by a very thorough  visit to a respiratory clinic. I was quite relaxed about it, not expecting miracles but open to them should they be on offer. So when I was sent for a chest X-ray, I was unprepared for the moment of fear that took over. I rationalised why this would be done and managed to return my heart rate to normal. No it was nothing to do with cancer , just a sensible base line. And it was fine, thankfully. The team were kind and the assessment was detailed. I left relieved and with a plan which I hope will help. And just a bit shattered after yet again being surprised by how the "c"word can jump up and bite you when you aren't looking. The title of this blog came to me as I was waiting to be seen, "Loneliness of the long distance cancer survivor". It does feel like a marathon sometimes , never quite knowing  just where and what the finish line might be; alone in the experience and all it entails.

Reasons to be cheerful. We've had a lovely family weekend, with birthdays and housewarmings to celebrate. The sun shone, the birds and flowers suggesting its spring and us all feeling maybe we can shake of winter soon. Lets hope so.

Mid staffs...holding up the mirror on society?

I was 8 years old when I decided I wanted to be a nurse. I had had my tonsils out and was a bit scared and definitely sore. The nurses who cared for me, made me think, I want to be like them...they make people feel better, they stop people feeling scared. I would like to do that.

Fast forward a few years and I am choosing a future career on leaving school. You can't become a nurse, you should go to university was one of the main themes of advice I got. What I heard in those words was the lack of respect for the profession, the implicit why would nurses (women after all in the main...) need to be educated at university? Caring work in our culture is not valued, poorly rewarded and generally not seen quite good enough as a profession by some let’s be honest.

But I found a way to do both, go to university and study nursing. I loved the course as it focused from day one on a person centred approach. Now it’s many years since I have been a nurse, but scratch the surface and it’s still a nurse you find. It's that drive to help people back to health, to ease pain, to make a system better to enable the best care, to make every person count- that makes me do what I do.

The Francis report has therefore grieved me deeply.  I do believe there is excellent care provided in health and social care and I have personally experienced it recently. My family however have seen both sides of the coin. A lack of person centred care resulted in a readmission, creating more fear, loss of confidence, physical decline. It could have been avoided. Organisation centred care not person centred is costly and less safe.

I have said before I think this is driven by systems and targets and laws of unintended consequences in part. But I suspect-no-I know, it's more than that. Does the system drive out compassion, killing the very motivation that brought people to the profession in the first place? Do we honestly need to teach nurses and (other health care professions let’s not forget) compassion or do we need to create the right environment for that to flourish? But we do need to help health and social care professionals understand and fully embrace a person centred approach. Right now its counter cultural and that needs to be the focus for change.

But what of our wider society? Is this crisis in care not in part a reflection of our wider society? Have we lost the art of caring for each other? I know animal charities see elements of this. Dogs returned for re homing because they just don’t suit any more, like an old handbag. Pets bored and under stimulated returned for scratching the furniture. Loneliness is our fastest growing long term condition, with a similar effect on health as smoking. Ageism is in part driving cultures of care. Need I go on?

Its complex but we collectively must tackle this. Let’s not scapegoat a profession who deserve better and have been told for years we must focus on organisational needs like targets and budgets not caring for people. And let’s not pretend more resources or more regulation will fix this. 

And so I return to heartfulness……..heartful health and social care, heartful organisations to work in and a heartful society to be part of and contribute to. It’s a whole hearted/ whole system response we need. Now I’m up for making that happen…are you?

Reasons to be cheerful….walking on the beach in February.My new self-employed status means I am flexible enough to plan my walks around the tide some days this week and it’s been uplifting. Cara has had to move up a size in her coat and as you will see she looks like she has pinched her Mums coat to wear….but she was cosy and its cold out there!

Not simply having visited.....

When it's over, I want to say: all my life

I was a bride married to amazement.

I was a bridegroom, taking the world into my arms.

When it's over, I don't want to wonder

if I have made of my life something particular, and real.

I don't want to find myself sighing and frightened

or full of argument.

I don't want to end up simply having visited this world.

~ Mary Oliver ~

If I ever write my story it will be called the woman who cried! Am I so unusual I wonder? Dont men cry? But it does seem the admission of shedding tears is still something worthy of comment.The Herald did a lovely article about my departure from Breakthrough and it was called "Crying out for attention".Not me you understand but my take home message was breast cancer is not sorted and the importance of not taking the foot of the pedal....and also the reference to having shed tears in a very public setting.

Now I will a spare you a description of my tearful goodbyes. Yes I have shed tears but I have survived and mostly the tears followed kind words as well as my sadness as I said my goodbyes. There are so many people I will miss and hopefully many who will stay in my life too. But I do have a sense from  all the warm words that I have made a difference in Breakthrough and I am truly grateful to have had that opportunity.I know too I have left it in good hands.  But I'm cheering and supporting from the sidelines now.....

Life is always unpredictable. I told you of saying goodbye to my Mum and that was complicated by a fall and stay in hospital for her, before she set off. It was with a heavy heavy heart I said my goodbye, at least until my next visit. But she hadn't been in hospital since I was born until very recently (yes I know that's surely was not yesterday!). That's a pretty good record which we are all grateful for.

So when I heard more sad news this week, it immediately put all of my goodbyes into perspective. A colleague who had worked with us in The Alliance had died in his sleep after a relatively short but devastating illness. He and I sat together at dinner around 18 months ago and we discussed my recurrent cancer and my blog. I recall he spoke of my courage in expressing my journey. He also spoke of his pride in his daughter recently having graduated from  the nursing degree I had done so many years previously. A loving Dad, a loving husband, a great advocate for people with heart disease and many other long term conditions, who had not told me( or many others at that time) of his own diagnosis, with motor neurone disease. The condition took its toll quickly but he continued to work, to do what he loved best with enormous courage and determination. The organisation worked hard to enable him to stay at work and absolutely I commend them for that.

I am glad his passing was peaceful, it could have been so different. My thoughts are with his much loved family and his colleagues who stood by him in his time of need. He was a gentleman in all senses of the word, who cared for and about others. I am so sorry his life was shortened this way. I know he made difference through his work and at some level I hope this helps those who grieve. So I dedicate this blog ,and the poem I started with to Andy, so glad to have known you. He didn't just visit this world, he made it better. Rest in peace.

Reasons to be grateful:
I have had such love and encouragement this week. I probably have recognised properly the role the cancer has played in my decision too but I have choices and I am well now. I am so excited about starting in my new role as a coach and consultant and the difference I hope to continue to make ; supporting people and organisations to be all they can be.  Thanks to my colleagues in Breakthrough for making me laugh and cry this week. Looking forward to next weeks fun night out......will try to sneak a photo! Thanks to all of you who have sent your good wishes too. Keep in touch!And thanks to to the warm welcome from the great folk at Oasis.
.........and finally I went to the Filmhouse in Edinburgh to see the last two episodes of Borgen. Following a fantastic couple of episodes which engaged all emotions from outrage to grief, we then experienced an interview with the actress who plays Birgitte, resplendent in a tartan suit.Bit of a girl crush lets be honest.....!

For Auld Lang Syne

 "For auld lang syne, my dear,
For auld lang syne,
We'll tak a cup o' kindness yet
For auld lang syne!"

I am no good at good byes. And they are fast approaching. Now I concede whatever had happened in my life I may always have found them difficult but I believe that the day nearly 19 years ago I was diagnosed with cancer makes them harder for me. It opened up that vulnerable place and I just was never able to shut it up again.

So with some big goodbyes approaching, a trip to see Les Miserables at the cinema was very  risky but I really wanted to see it. Off I tripped with my colleagues and of course "I dreamed a dream" was my undoing. A scene of a mother dying and not being there to care for her child my nightmare. But it's also such a powerful story of love and redemption that my heart was lifted too. A bit of a cathartic release lets say!

It's the theme that's at the core of my vulnerability: not being there for my children. I was interviewed this week about my time at Breakthrough Breast Cancer and my hopes and plans for the future. Inevitably my own breast cancer story was explored and it was speaking of lost friends and my children that  brought the emotions to the fore. But I do know its what makes me good at what I do. It does touch me deeply, I want things to change for everyone and I may be vulnerable about loss but that just makes me human....not weak. Indeed I suspect it makes me all the more powerful, especially if I don't try  to box it away.

So this is a very long way to say if I am tearful next week as I say my goodbyes....that's ok, it's just my way of acknowledging that I care. And I do care, especially about making things better for all the people affected by breast cancer. As one of the women in our One Day video says "I want all Mums to be there for their children's key milestones"......amen to that. I will continue to do my best ,from the sidelines in the future ,to make that a reality.

My other goodbye this weeks is to my own Mum, who is moving closer to family to get the support she needs now. After 60 years in Scotland she is returning south. It's a huge step for her and absolutely right. To be closer to the heart of family and feel less lonely. I will miss her, but I am so pleased for her and know she won't look back. So this one's also for Mum, go well but aye keep a bit of Scotland in your heart. Auld lang syne.

Reasons to be heartful. The love and support of families, friends and colleagues. And the chance to make a positive step to a new future is always there if you are brave enough and have that love and support to make it happen. So all stand for a toast please! To courage, to the future and to love in all its forms.

To make us well

I have lived with the experience of cancer for almost 19 years now. Of course at times it has been a background light only and at others it has been omnipresent. So when I stated bravely a couple of weeks ago that's it behind me again now, I should have known that these journeys are complex. That often the moment you believe you have stuffed it back in the Pandora's box, it bares its teeth.

And it's not the cancer as such that has reared it's head ,but the impact of it all. Mostly it's the reminder I have not fully regained my strength. Nor fully embraced my vulnerability....As I picked up the prescription of antibiotics and steroids for worsening asthma, and then returned to work, I did momentarily note the irony. Then got back to being as busy. So I am coughing still but better and in part thankful to my condition for the reminder to allow myself time to recover, in all it's light and shade. I have just listened to "If it be your will" by Leonard Cohen. His songs are always soulful but this one seems to come from a deep truth out of a path from illness that connects with me.

It's his expression of vulnerability that inspires and scares me. His raw ,raw honesty leaves me wondering how can he then get up and sing it. Could I sing mine? But at some level I know I need to. This blog has been a route to that but I'm still struggling to write this down. I know the paradox that I am at my most powerful when I embrace my vulnerability but its hard and my default is to avoid it.

Perhaps you have already seen this TED talk by Brene Brown on vulnerability, if not do watch...if you have , watch it again! Following my Oasis Full Circle action learning set this week when we discussed her latest book "Daring Greatly" I have started to read it and reflect on what would be my daring greatly? This move to self employment feels like a lot like daring greatly and some of the projects I'm keen to explore, like "Heartful Scotland" feel daring too.........but is that really it?

I acknowledged a real risk for me ,as I am poised for my move , because my strategy in tough times has always been to keep busy. Also I love new ways to get involved and make a difference. And it struck me quite forcibly that me doing a portfolio career could be akin to a chocoholic working in a sweet shop.  Inspired by so many different things and finally tipped over by the exotic dark chocolate with ginger!!!

So from this place I recognise that my personal daring greatly is to lean into that vulnerability and not rush around filling time but take some time at least just to be, to understand my truths. And know that from this place of centredness and reflection, I will do my best work. In her book Brene Brown describes vulnerability as the central part of having courage, compassion and connection.......I know she is right.

Reasons to be heartful: it has to be the full circle action learning set in Oasis. The deep learning, the space to reflect, be challenged, be inspired and find doors unlocked for the first time is quite, quite wonderful. And of course it's also enabled deeper connections and new friendships. Perfect. Thanks to all of you.
And finally snow arrived in Edinburgh as the photo shows. The pup was uncertain and confused but playfully brave nonetheless. Playfully brave now that's something to aim for.....

What stops care?

I started my nursing career in Edinburgh, mostly within the historic buildings of the then Royal Infirmary of Edinburgh. Its roots were as a charitable hospital and as such was proud and confident of its superiority.The Nightingale wards offered a really great opportunity to monitor patients but little opportunity for patients to sleep. 

The wards were the domain of the Sister (yes sexism was alive and well) and the hospital the nurse managers (even the matron had met her demise-Hattie Jakes had hung up her starched cap). You knew where you stood and frankly as a student nurse that was in a pretty shaky position. You did a lot of learning by doing (yes ,thrown in the deep end ) and team dynamics and local leadership were the things that helped you sink or swim. The good old days? I do recall being reprimanded for talking to patients and sent to clean the trays instead…mmmm. And in other wards my memory even now is the love and compassion shown to others and how proud I was to be part of that. It’s the difference leadership makes ,you see.

 
Recently this august organisation has come in for some tough criticism. It’s not the environment that’s the challenge now( car parking charges apart)-it’s a state of the art new hospital-it’s the level of care. It’s the milk of human kindness. And we know from reports in other care settings, this is not a challenge peculiar to this hospital. What has caused this shift-if indeed it is a shift?  

Some have suggested that its now that nurses have degrees, the compassion has gone. Do we really believe that people cannot have advanced level education and be compassionate? Now I speak as a former nurse with a master’s degree so of course I am biased. When I did my degree in nursing more than 30 years ago now, we were a rare beast. Patients often asked why we wore a different dress. “Its because I am doing a degree along with my nurse training”, I replied on one memorable occasion. “What degree is it?” he asked. A BSC said I."What does that stand for?" (I had had a particularly trying day) , “Best S**t Cleaner” said I-engaging my mouth before my brain. How we laughed…phew! But what did my degree teach me? It focused on person centredness, it taught me that health is much more than biology; it enhanced my people skills and so much more. It also taught me to question and not to accept anything less than the best. And its why I am still focused on these things now
 
Maybe we have focused on the wrong outcomes over time. Improving clinical outcomes is of course a priority but perhaps in some settings that has been done at the expense of patient experience? Have we lost the clarity of leadership in the complexity of management systems and in turn the leaders finding themselves focused on targets rather than people? No doubt its complex and no one solution can fix it, but fix it we must.  

In an attempt to redress the balance the Scottish Government have put a key focus on person centred care. And that is  welcome. And there are a number of approaches to help services to get to the heart of the issues. Breakthrough Breast Cancer introduced the service pledge a number of years ago and it does that very thing of getting to the heart of the issue, providing patient feedback and patient support to improve person centred care. Another such tool is emotional touch points giving patients the opportunity to express their feelings and enabling staff to access emotional language through that process. Both mechanisms are empowering to staff and offer patients a way to move on in their recovery. The stuff change is made of. So it can happen, we now need a will to change and also I believe to acknowledge a key role of the third sector too to enable that as partners in the process.

Reasons to be cheerful! I have survived the first week back to work and the plans for my leaving celebrations are underway, I don't want a fuss I have proclaimed. You don't always get what you want in life was my answer.......too true, too true. Oh and cat and dog relations are maybe improving? What do think from this photo?

 

 

To live with joy an a' that....

In some ways as 2013 begins I feel poised on the brink of change more than any other. As my last blog described it feels like a time to leave the cancer experience more firmly in the past. Yes! I say this in the knowledge that life with cancer can aye have twists and turns but it's a milestone none the less.

I start a new career building on the things that I believe I am best at, make the difference I believe in and bring me joy. And that's a few short weeks away now. The excitement sits alongside some fear and yes sadness too for those I will miss from my role in Breakthrough. But ( perhaps this is a sophisticated form of denial...)  I know I will always feel a connection to the cause and its people ,as well as the organisation I set up here in Scotland. It will ever be in my heart because of my complex attachment so it's not goodbye, it's just a different engagement.

As I describe the  areas I want to focus on in the future, I know they are interconnected. But it's been hard to articulate that neatly. My passion to improve health and well being for people and communities is also linked to enabling authentic leadership and healthy and effective organisations. I doubt that one word can capture the complexity of all of that, but there's one word I keep coming back to. It's heartfulness. You will have seen mention of it in earlier blogs perhaps. The word keeps resonating with me and I am keen to explore what that means in my work and those I work with.

In the context of Global, European and UK economic uncertainty there are enormous challenges for those who lead in private, public or third sector organisations. Inspiring quality performance and development needs creative and engaged leaders, with deep knowledge of their craft and who understand the value of their best resource, their people. I believe to be effective that needs to be done with hearts and heads engaged.

In particular here in Scotland we have a time of significant change. The referendum on an independent Scotland approaches, seen by some as a natural and exciting next step and by others as a complete abhorrence. With many in between unsure, part exited, part fearful but with no real sense of what the future would look like. And in spite of calls for a positive discussion just this week, that does seem to be illusive.  My interest is in helping to shape a view of what a positive Scotland would look like. Whatever the outcome at a referendum, the world as we know it here ,will be changed. The one I want to see, whatever its political hue, is a heartful one. Not naïve about it's challenges but seeks the solutions to them through a heartful lens. So what would that look like? That's the question I want to explore.

If you look at the meaning of Heartful, it's both complex and simple. The complexity includes integrity, honesty, self knowledge, being kind to yourself and others, a true generosity and caring for the welfare of others: compassion in action. At its simplest its about love and connection to others and something greater than yourself. So what would that mean for individuals, communities, organisations and even nations?

Change, as always , starts with each of us. So today's question is what would a heartful 2013 look like for you in your life and work. What could make your life more heartful? I would love to hear your thoughts on this. Drop me an email, tweet me or post a comment on my blog.

I have had a "reasons to be cheerful " section in my blog to date but my plan is to make it reasons to be Heartful. But as its the first blog in January I want to describe my one resolution this year. It's to enjoy the adventure I am about to embark on and find joy in life everyday. There I've said it!

Reasons to be Heartful.
Well it's Scotland and its New Year so i have turned to our national bard, Robert Burns. His poem A Mans A Man for A' That is a personal favourite. I leave you with the last verse ( or listen to the link here recorded for the opening of the Scottish parliament) and my best wishes for a happy, healthy and heartful 2013.

"Then let us pray that come it may,
(As come it will for a' that,)
That Sense and Worth, o'er a' the earth,
Shall bear the gree, an' a' that.
For a' that, an' a' that,
It's coming yet for a' that,
That Man to Man, the world o'er,
Shall brothers be for a' that."