Endings, Beginnings and Being Scared


ward sister

It’s a big deal.  I have worked in the NHS since 31st January 1983, when I first started my nurse training.  I have also been in a salaried role since I was 16 years old.  I have never had a sabbatical and only took 14 weeks off work when I had my son, returning and expressing milk everyday on the midwifery unit at the hospital where I worked so I could continue to give my son breast milk.  I have worked hard, chosen difficult roles and never been afraid to volunteer or do extra.

I have some regrets.  It was impossible to stay at the bedside back then and influence things at a more senior level.  I am of the ‘Management Generation’, where nurses moved in to management if they wanted to be involved in a wider range of things and, as I saw it, have an influence on how things were ‘done’ for patients.  There are lots of my generation like this.  It’s sad because we are castigated for not staying at the bedside and, as I have said in blogs previously, accused of selling our souls.  I was ambitious but all I ever wanted to do was make the biggest difference I could.  I also know I was a good bedside nurse, because patients often told me.

best way to prediuct the future

I hope I have made some difference.  In the last three decades I have always done new jobs; a complaints manager before there were any, setting up NHS Direct, moving into nursing/clinical informatics.  That’s one of the reasons its been hard; being one of the first is often harder than following someone else.  I have given as much support and help to others as I can, even when it was difficult.

Now those times are finished, and I have set myself adrift.

I no longer have a ‘proper’ job and for someone like me that is a big deal.  I think I probably have around 10 more years of career left, at 55 that seems reasonable. I am fed up of being a slave to a job, although I have been very lucky in the roles I have had.  My ex-boss says I had earned autonomy (I think he means he never really knew where I was or what I was doing!!) but clearly, I still needed to deliver what the organisation was paying me to do.  I loved my job, but the timing was right to go; plus, its someone else’s turn to do something with the role.  I don’t want to be the person everyone wishes would get out of the way!

So, I am forging out a new path and I am discovering the things that seem to be the things that make me ‘tick’.  I want to rediscover my voice and use it well. I am increasingly interested in the experience of patients and how we make sure their voices are heard, especially in the digital space.  I haven’t finished in informatics yet where, in particular, I would like to do something about the gender divide.  Its better than it was 20 years ago but I still feel that we have some way to go.

It appears that I need a cause, something to drive me on, so that’s what I am focusing on doing – working out what makes me tick.

I will be doing some work to keep the wolves at bay and feed my family.  As is usual with me though its far from straight forward.  So the trendy way of describing this is a portfolio career.

I will do a small amount of independent work.

I have also decided to join a tiny (a small number of staff compared to NHS Digital) fledgling social enterprise called Ethical Healthcare Consulting.  Why would I want to take huge sums of money from the NHS, working as a consultant? The NHS that has fed me, paid for my house and educated me in the last decades?  This way, as part of a community interest company we can aim to try to put something back and to do some good, whilst bringing our expertise back to the NHS and without making huge profits.  I see us as sitting just outside and alongside the NHS in values and ambitions.

I will also be working with the glorious mHabitat team and trying to help the Leeds Care Record team to deliver the Person Held Record WITH the people of Leeds.

What else, I am not so sure.  The diary isn’t full but that is perhaps good for now.  There is a house to reclaim as mine, new chickens to bring to the garden.  There are books to read and blogs to write.  I have never had a greenhouse and I want to grow tomatoes and blooms like my Granddad did.

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Exciting, I guess.  But bloomin scary too!  Wish me luck!

Regeneration of self


93789758 - thick ropes on a deck of navy ships in the port of bergenI have a strong personal identity and all my worlds tend to collide in to each other with a distinct lack of clear boundaries.  I don’t mean I am boundary-less, more that I am Anne, the wife and mum, strands that are bound around identities as a worker, a nurse, a digital nurse, a patient, a friend, a pet owner, and someone who wants to try to leave the world a slightly better place when I go.  I see the many strands of me bound together like a strong rope.  I completely love working with people and gain huge amounts from comradeship and social contact, these too are strong elements of my rope.

So here I am having finally handed in my notice and technically moving away from my existing role as Chief Nurse at NHS Digital.  I am so proud to say what I do now, yet I am walking away from that title in May.  I am not sure how much of the rope needs to unravel as part of that process.

I am, I admit, a bit scared.

I know that I am not ready to stop working and think I have at least another decade where I want to do ‘stuff’.  I just can’t see yet what that means; what the new strands will be and how they will join my experiences and the other existing parts of my strong rope.  The thing is, I have worked since I was 16 years old; I only took 14 weeks off as maternity leave and I have had no other substantial periods of time off.  From the date I started work, to the day I finish this job will be 14,121 days.  Of those days, 12,892 of them have been working as a nurse. Those are big numbers.  No wonder my work identity is a strong component that runs through my life.

So, if now is a time for re-creating myself, I am worried that the rope may be bound too tightly.

I think I need to face a period of letting go.  I can’t be the same thing forever and it’s time for change, hopefully in a good way.  Then I need to face up to some new choices and new directions.  It should be the most exciting time, but the truth is I am already having sleepless nights, not worrying exactly, its more of a nagging anxiety about letting go.

I guess it’s normal, but I am finding the waiting time excruciating. I am terrible at endings and this one seems a mighty big one!  I usually ignore them and sort of slide into the next thing, avoiding goodbyes. I would prefer it to happen now with no extended waiting times. But patience and preparation are the name of the game right now, finishing things too.

I hope to blog about my new adventures, assuming they come to pass and want to get my writing juices flowing again, so my apologies for the self indulgent blog.

If you have made some major life changes in retirement, let me know and send me some words of encouragement and your tips!  I feel sure this is a common life stage problem!

saltburn

“Since when,” he asked,
“Are the first line and last line of any poem
Where the poem begins and ends?”
Seamus Heaney

 

Poem by Sophie Sabbage, The Cancer Whisperer,  Thank you.

poem

Putting people at the heart of digital #PDDigital17


11845107 - circuit board with in heart shape patternHaving a good digital idea isn’t enough. Good ideas are all well and good but only if they solve a real problem. Knowing what problems people face in terms of their health and care can take real insight – a deep understanding of issues that are complex and very personal.  It’s also true that listening alone isn’t enough.

It’s possible if we don’t change the way we create digital solutions and we continue to create an environment where we go straight to what we believe is the solution then we may miss the point.  That’s where co-production could help but if we are not careful this term can become diluted and misused. I recommend reading this blog by Mark Brown to read a little bit more about what I mean. As Mark says ‘it’s really, really hard’. We talk about user research in digital but that’s just a type of listening hard and for me still doesn’t cut it.

So, what can we do to make more of a difference?

people-drive-digital#PDDigital set out to explore this idea believing that putting people at the heart of digital would have a positive influence on the use of digital and social for good in health and care.  #PDDigital stands for ‘People Drive Digital’. Drive in this context is a very important word: putting people at the centre isn’t enough. We need to really focus on the concept that people who use services have skills and insights that are unique and are assets in their own right. We need to break down the barriers between people who use services and professionals who work on solutions. It’s about partnerships and recognising where good ideas really come from and creating environments where they can thrive.

Co-production in a digital space means that we respect where these assets lie and #PDDigital has unearthed some great examples of solutions that have been developed in this way. But there is a problem still. Getting people with good ideas to the stage where their ideas can take flight and become real solutions is difficult.

giantlogo1This year the founders of #PPDigital, Victoria Betton, Roz Davies and myself have decided to bring #PDDigital closer to the other people that matter; the technical people who have great skills and entrepreneurs looking for fab ideas. We will be at the GIANT Health Event 2017 aiming to have new conversations with different people aiming to illuminate the importance of those ideas that arise at the heart of what really counts; the ideas and challenges faced by real people. We hope that by talking about the idea that the real insights are held by patients, carers and professionals caring directly for people, we have the best chance of making a digital difference.

Please come and join us at GIANT if you are interested in our ideas. We welcome everyone and we look forward to having some great conversations.

A Nurse who has ‘Sold her Soul’?


cropped-nursing-badge-e1398349876516.jpgWhen I was 26 I decided that I wanted to do a different nursing role and I became a research nurse for a programme that aimed to develop an quality of life assessment tool. I don’t think you can do much more patient centred work than this but despite that my father-in-law told me that I had ‘sold my soul’ and all ‘proper’ nurses were at the bedside and I was wasting the money that had been invested in my training. This was an ongoing debate between us but essentially I ignored him. This wasn’t the last time similar things would be said to me in my career. Later when I went to help to set up the NHS Direct service I was told by other nurses that I had ruined my career and I would never get another job. It was clear to me that for my father-in-law and for these other people the professional identity of a nurse was firmly uniformed and at the bedside.

I recently read an interesting paper that seeks to understand issues of professional identity for medical professionals who have adopted a managerial leadership role. This strikes me as in many ways like a nurse who has moved into new professional contexts away from the bedside. I thought it would be interesting to use the framework identified in this work for personal reflection on my career and professional identity as a nurse, manager and informatics specialist. Be prepared! If you read the whole paper I found it a hard read, reaching as it does into sociology and organisational theory.

So here it is I will try to summarise what I see as the key points from the paper. I have taken the key conceptual points but not dived into the full conceptual framework (I suspect that would be a PhD!).

13971283 - two halves of the paper masks on a wooden backgroundThe paper ‘Hybrid Manager- Professionals’ Identity Work: the Maintenance and Hybridization of Medical Professionalism in Managerial Contexts’ (McGivern et al 2015) concludes that there are two types of storylines that are used around medical managerial roles i.e. roles when a doctor adopts a managerial role in addition to that of a medic. The article used comparable data from three studies of organisational change in the NHS and used identity theory work in order to create a new classification framework.

The first role identified is doctors who are described as ‘incidental hybrids’, those who find themselves in positions of management responsibility but do this through a sense of responsibility or duty. They are likely to maintain strong personal professional identity, continuing to see themselves principally as part of their professional group, managing the same traditional professional individual and group norms. They usually position themselves in these roles in a transitory way often by obligation. These types of clinical managers usually represent and protect institutionalised professionalism. They seek to align themselves to their professional identity and group first and may down play the managerial aspects of their role. They are likely to adopt a ‘representation’ position in relation to their profession.

In contrast, ‘willing hybrids’ are those professionals who have adopted and integrated a broader professional identity earlier in their careers or later in response to professional identity challenges; they have thought through the breadth of professionalism and see it extending beyond that of the traditional model and have embraced this identity. They have a different professional narrative to a traditional one, often formed by mentors and role models, where they have identified and sought to resolve professional identity conflicts and embrace the hybrid role. An example of this might be the tension between the attention to a single patient versus the needs of a population, weighing up the collective good versus individual need or where there is a need for professionals to align themselves with managers rather than seeking purely a professional allegiance. Willing clinical managers often position themselves as a professional elite seeing the management of others and/or services as a more challenging role. These are professionals who have embraced a permanent hybrid state. They are likely to be misaligned with traditional models of professionalism by engaging with others outside of the traditional professional hierarchy, for example managers, to the extent that others may accuse them of ‘moving to the dark side’.

I found this article to be really thought provoking making me reflect on my role in relation to nursing professionalism and my career.

Through my career I have sought managerial roles where the impact of what I do extends beyond that of individual patients and have been accused in the past of having ‘sold my soul (to management)’ and yet I still feel firmly placed in a nursing professional context. I think I have managed to reconcile my adopted roles and integrate these with my professional identity. Early in my career I admired nurses who were visible change agents, doing new things and leading us to new thinking. My move to being a hybrid professional came reasonably early in my career.

My extension of thinking around the contribution of nursing and the broader professional agenda was influenced by people in novel and innovative roles. Two examples spring to mind: Alison Kitson  who I met in the late 80s/early 90s when she was working on standards of care I so wanted to work on similar creative and innovative work. Similarly, in the early 1990s I went to Leicester Royal Infirmary and met Helen Bevan (@helenbevan) who was then leading innovative service improvement initiatives I can remember wanting exactly that job. It’s funny but I now know Helen and although my visit is very memorable to me I know she can’t remember it! Finally in the early 2000s I was very inspired by Maxine Craig (@maxine_craig) who was a nurse who had already taken a step towards a realignment of her professional identity and I was in awe of the improvement work she was doing and again I remember thinking I really wanted her job!  Of course I never did get any of those service improvement roles despite trying – sometimes its being in the right place at the right time!

I still feel hurt when others make the observation that I am ‘no longer a real nurse’ as in my reflection of professional and personal identity I believe that it is possible to both be a nursing professional but one whose role extends beyond that of direct patient care. I see this accusation as similar to those who accuse doctors in management as having moved to the ‘dark side’.

My reflection is that nurses who work in informatics or technology roles also have adopted hybrid professional roles where there is the necessity to blend professional identity and influence change at scale, including influencing what we might consider to be out-dated and old-fashioned professional nursing practices.

15350566 - people-puzzle isolated on a whiteI can also see how this is challenging and why professionals with these blended professional identities seek to join a new professional tribe, where the issues of professional identity management and norms can be more safely explored. These tribes also create alternative role models and mentors. I feel that this is emerging in the informatics community where they have even selected to embark on a journey of professionalisation.

who are youMy conclusion is that I have a tendency toward being a willing hybrid who elected to adopt a role that seeks to combine professional identity to a specialist informatics role. I believe that it is possible to hold the values of patient driven care at a population level beyond that of meeting the needs of an individual patient.

The paper discusses in more detail the impact of hybrid professionals and identity work and I recommend it as reading in particular for those who find themselves in non-traditional professional roles.

Thanks to Pete Thomond (@pete.Thomond) , Managing Director, CleverTogether, for bringing this paper to my attention but also for his analysis of the paper which helped to form my reflections.

I believe that the phrase ‘Once a nurse, always a nurse!’ is true but it is possible to adopt a hybrid professional identity; these hybrid roles, that push the boundaries of traditional professionalism, create the climate for professional tensions that lead to change, modernisation and improvement.

Wrapping presents


30561685 - piles of presents  doodle heaps of gift boxesMy husband’s family are great at wrapping presents; they have the art of disguising the real content of a parcel down to a tee. Even gifts of cash for grandchildren come in large boxes. That way you never can be sure what’s beneath the wrapping paper.

I think feedback is a lot like this. When people give feedback about their care experiences they often have thought carefully how to wrap up, carefully, what they want to express. They give it as a gift – most often they say because they don’t want the same thing to happen to someone else, or they want to express thanks for an event that surpassed their expectations. They carefully wrap the gift in the words. It’s hard to choose how to express those words – just like carefully wrapping a present.

I’ve blogged before about how often services respond to these ‘gifts’. I think it’s often a response to the size of the parcel, when in fact they need to open the gift more carefully, examine what is inside and look at it with fresh eyes, irrespective of the wrapping.

It’s cliched maybe to say feedback is a gift but that is exactly what I believe. If we were to consider more carefully what people were saying and hear what they were expressing it would help us to focus on what we might need to do better, or what we are good at.

To do this we need to be able to unpick what feedback means; tune in to the real messages and focus on ‘what next?’.

presents 2For me that’s the real beauty of Care Opinion. It creates a perfect place for this to happen. The feedback is volunteered not sought, so its wrapping is most carefully expressed. The giver of the gift really wants it to make a difference and wants staff to hear what they have to say.  So, working with feedback in teams seems to me to be a no-brainer and that’s exactly what Care Opinion are seeking to do.

I know that if I was still a ward sister I would want to receive those gifts and would be anxious to look carefully at what was inside rather than just reacting to the size of the parcel.

I am delighted to have been asked to be a Non-Executive Director for Care Opinion and I will continue to help them create ways that people can offer the gift of feedback and work on how the service and individuals respond.

Noise


I am often so very naive.  I know I am supposed to be an adult, who even has some semblance of a brain, but I am a marketer’s dream.

notificationsI have never considered social media noise before; never thought about how all the notifications were competing for my attention and how often I had got in to checking my phone.  It’s worse if I’m not focussed, so I can go all day at work and never look but one hint of a moment of boredom or procrastination and I’m there.  Cats and kittens always work…..

It was a presentation by Hany Rizk @Rizkhany last week that brought this in to sharp focus by showing this video.  I recommend that you watch it through to the end:

Also look at the website Time Well Spent

It got me thinking about how I manage my personal time and how I need to find some quieter spaces.  Hany managed to persuade me that I need to use settings better to manage my notifications and even switch off my phone (gulp).  I know, most of you are thinking; ‘where has she been????’

noiseI work in an environment where digital tools are seen as part of the future in the way we support health and well-being and I started to wonder how health related digital tools could compete with the existing noise.  How can we build tools that use notifications etc in a positive way, a way that enhances health related behaviours?  How can we compete with the noise of giants like Facebook and Instagram?  We need to think like Marketers!

If we are to build new digital tools that are successful and fit in with people’s lives we need to consider the noise that we create and how its positioned alongside the existing cacophony of social media.

I wonder who is thinking about that as they design new health tools.  I hope some clever people are!

52287225 - concept for mobile apps, flat design vector illustration.

Fantasy Party Planning


Abracadabra

Abracadabra – I magic my own party!

I met some wonderful people this week. On weeks like this my job rocks; the chance to meet some really fantastic people who enrich my thinking and make life fun.

 

On the long journey home I was thinking about what it would be like if I could just put some of them in a room together what magic might happen! It was like one of those personal ‘dead or alive’ dinner party discussions – who would you select? But more importantly what could we achieve?

So, this blog is going to list some people who I would love to put in a room together to party! So how did I select my list? Each person has a set of unique super powers. Every single one of them I would think having coffee with them was a highlight of a day and finally I would just love to see what they would do if they were given a collective challenge.

The list order is alphabetically deliberately; there is no priority order and I know I will have missed some people, forgive me. Lists are written at a moment in time.

Here are where my party initiations are headed:

envelopeDeborah El-Sayed @Debselsayedd – Debs is someone to dream with. When we discuss ideas and make plans our conversations go to the most unexpected places. She’s is fun too and her parties are always the best ones, creative and expansive, in exactly the same way she thinks. She also makes things happen.

Emma Bearman @emmambearman – Emma is wonderful. I have never met anyone like her before. She is like a warrior, someone who gives part of her soul for her work on play in Leeds. Her passion is practically palpable and she would keep the party going with her energy (and play).

Hany Rizk @RizkHany – I went to a UX conference this week and his presentation blew me away. Hany is selected for his ability to make me think differently. I suspect he is also an ace UX designer. By the way he is also a super cool and from the Lebanon*. I think he brings values too.

Heather Henry @heatherhenry4 – this nurse is a super hero, who has taught me so much about asset based community development but she is also so determined and focussed. I use the story of Salford Dads and pub nursing as ways to describe an alternative way. Heather rocks.

Jenni Middleton @nursingtimesed – all parties need someone who can communicate with insight, wisdom, style and flair and that is what Jenni can do. Unusual for me to chose a journalist but Jenni is a real pro and she also has great style. All parties need someone with style!

Lance Gardner @LanceAACltd – selected for his creativity and his clear focus and insights into doing the right thing, the right way. No half-way measures for Lance, if it’s not done right he doesn’t do it. He’s also a trail blazer. Lance has a non-flashy way of working that I really admire.

Linda Whalley – Linda is a colleague. She is a great thinker and worth having alongside you but she is also one of the wittiest people ever. She has a way of seeing situations and people that is unique, wise and funny.

Lindsey Fallow @betabetic – what a treat Lindsey is to know. I don’t know anyone else quite like her. She is clever, wise, unafraid and has a groundedness about her that makes me feel safe. I don’t know anyone who has so many life challenges who remains so positive and un-beaten. She is just incredible.

Mark Davies @markpricedavies – ah Dr Mark. One of my favorite doctors. Mark is fun to be with but he is also a good person to think with, he will bring new ideas that others haven’t thought of. He also has a fearlessness about his persona, a non-traditionalist.

Mary Dixon-Woods @marydixonwoods – I’ve never met Mary (I would love too) but every party needs a professor and researcher and Mary is the one I admire most. She, too, is someone who is pushing boundaries and looking at things in new ways. I used one of her emergent research approaches in my MSc and my tutor thought I was being a bit alternative – which I consider to be an admirable thing! I will maybe meet her in real life one day.

Maxine Craig @maxine_craig – Maxine understands people like no one else I know. A deep meaningful insight into people and organisations wrapped in a beautiful soul. She is also so restful to spend time with! She will keep the party grounded and well.

Pete Thomond @petethomond – Pete is very special. I love the way he thinks – there are no blocks and barriers in Pete’s mind and his conversations reflect that. I guarantee at the party he would be an ideas generator, someone who asked interesting questions and could see the connections between ideas and concepts.

Rachael Dunscombe @UKpenguin – Rachael is in theory an IT person but when I look and see her that’s not what I see! I see someone who has so much insight into a wide range of things, not for her just pure IT but real breadth and depth! A linker of things…. Someone who I want to meet more in future.

Rob Webster @NHS_robW – Rob for me represents values. He is clear about his and would make certain we were clear about ours. He is also wise; his life and work have made him so.

Roz Davies @roz_davies – Roz is a very beautiful person. I don’t know anyone else who so consistently lives the values they express. She is someone who it’s cool to hang out with to explore values and find deeper meaning. Never under estimate her!

Simon Norris @simon_Norris – Simon is a creative if ever I knew one. His optimism is what strikes me though and his values. You would be surprised about where conversations with Simon go. Another value driven person. I love great UX designers too, they are the ones that bring IT alive for people.

Steve Wheeler @timbuckteeth – I don’t know anyone else like Steve. An academic but he is uber cool and another thinker. He is also a rebel I think. I admire rebels with values. They make me feel braver.

Susan Hamer @dollyblue3 – selected for her determination but also her incisive brain. She knows the right thing to do and does it regardless of what people think. She can be out-spoken but you will need to be at this particular party! She will help you to take an idea apart and work out what to do and bring evidence into play.

Teri Porritt @gbtpo – Teri is unstoppable. She is values driven and has so many facets to her professional persona. Peel away the layers and you will find many beautiful things that she brings to the party. Energy is the most obvious one, but you will also find a photographer inside!

Victoria Betton @victoriabetton – Victoria is another creative soul but one who can do serious business. She takes ideas and just makes them happen, like magic. Another values driven person who takes risks and walks the walk.

So how will this party go? I have no idea! But it won’t be boring that’s for sure! What ideas would we create and solutions could we find? What would we make happen?

I’ve no idea but I know that each one of these people brings gifts to my fantasy party. In writing my list I realised that there are some common themes: values, passion and the ability to think with me, play out through thinking – thought expanders.

I am grateful that all of these people have played some sort of role in my life from making me think differently to making me laugh out loud! Now let’s get on with this party!

Anne

47426673 - superhero kid at home. christmas holiday concept

Post Script: Writing this I kept on thinking of other people I couldn’t miss off (I am sorry if you are one! You will all know who you are I hope) and it was a great exercise in making me feel incredibly lucky.

*Correction:  I had originally thought Hany was from Germany but he is actually from the Lebanon – sorry Hany!

 

 

 

Post script blog: ageing well (Moves like Jagger)


Readers of my blog will know that a few days ago I posted about some of my personal reflections relating to ageing well. My reflections came from experiences that were not particularly positive.  This blog is to provide a counter-balance!

Last night I had the great pleasure to go with a group of women to a Michael Jackson tribute ‘thingy’.  We were in a restaurant so had food, some wine and then we sang our hearts out to songs most of us knew, because we were around when they were new.

But in addition to those of us who were gently starting to live our middle age (when does middle age actually start anyway?) I had the pleasure of the company of two wonderful women who provide a great role model for me.  Eileen and Pat are 86 and 85 years old respectively.  They were singing along with the rest of us until past 11 pm and much to my delight got up to dance with me.  And I mean dance!

Eileen in particular really likes to dance and I don’t mean tea dances either – I mean DANCE!  She explained that she had been dancing since she was 14 years old and told me she would go anywhere to dance; town halls, salvation army halls, church halls and she used to love to jive.  I loved dancing with her!  We danced to ‘Moves like Jagger’ and she can!

Eileen and Pat are sisters and whilst both of them have had sadness in their lives and I am sure like all of us have days where they are not so good they kept pace with all of us and I am sure enjoyed themselves.

My impression?  They don’t think they are old.  They see dancing now in the same way that they saw dancing then.  I was chuffed when Pat told me I was ‘quite trendy, wasn’t I?’  High praise indeed.

So, please take a look at these lovely pictures and I wish you the same joy and happiness I saw last night when we all sang together.

 

On getting older: my top tips


HopeA year ago, almost to the day, our 85 year old aunt lost both her two much loved children; a son of 53 and a daughter of 61.  They died within 36 hours of each other.  Aunty J was already a widow.  Her life, in her words, is now without purpose or meaning despite having one very close friend. She says she has aged 10 years in the last year and I don’t disagree.

Since this life changing event Aunty J has been severely depressed but also very lonely.  She seems unable to spend any time on her own at home.  It’s been hard to keep her occupied and have any sense of purpose.  I have become her main carer.

But this blog isn’t really about Aunty J; it’s about the things I have learnt that I think I need to apply to my life.  These are some of the things I have learnt:

  1. Work as long as you can; this doesn’t necessarily mean do what you do now but find something purposeful to do and do it for as long as you can. It could be paid work but equally it could be volunteering.
  2. Keep as wide a circle of friends as possible, don’t rely on one close friendship.
  3. Have lots of hobbies but critically things you do with other people but also things that you can find joy in alone, at home.
  4. Always be flexible and don’t fall into the trap of having a rigid routine where you do the same thing at the same time every day.
  5. Read widely and extensively.
  6. Keep in touch with church (or whatever this means for you) as there are always people there.
  7. Eat well, eat a variety of food and enjoy different things (see also link to 4 above).
  8. Embrace change and try new things in as many aspects of your life as you can.
  9. Always wear clothes that are stylish and represent who you are – ignore fashion if it pleases you.
  10. Grow things and enjoy the cycle of nature.
  11. Move about – keep active – walk every day.
  12. Learn how to use public transport –  don’t get trapped at home by an inability to drive.
  13. Cats make good companions and looking after them gives you purpose.
  14. Hug people – physical human contact is very important

Leeds-Portrait-PhotographyPlease if you have any tips do share by leaving a comment below:

I know not everyone will be able to do these things but nearly everyone will be able to do some.  Aunty J, as you may have guessed, hasn’t, and her life at 85 is less for it but we are making progress in building some sort of new life for her.

The significance and impact of living with fear


Thank you to Anne for again letting me take up space in her blog.

liz-cloughMy name is Liz Clough; you may recall a previous blog from me as a guest in Anne’s site in Aug 2016 called ‘Wondering if we have got it all wrong’ where I blogged about my experiences in the health system when I was diagnosed with breast cancer.

In the cancer world there has been quite a bit of publicity recently about a lady called Sophie Sabbage. Sophie got me reflecting again about my experiences and how cancer affects things.

Cancer permeates every aspect of your life but for me the fear was driven by my NHS care process; from the NHS letters dropping on the mat, to the text reminders. From saving the change from my everyday shopping in a tub for the pay and display carpark at the hospital, to writing a social engagement in my diary and noticing again a forthcoming appointment, scheduled in. From the overwhelming, trembling shakes and immediate urge to throw up in the waiting room, to staring lovingly into my families eyes and seeing the fear reflected back at me. From the doe-eyed look of sympathy and sorrow as results are shared with us, to the absence of any potential hope.

41537383 - white flower growing on crack street, soft focus, blank textSearching for glimmers of hope that are, if you can find them presented as a by-product of the real reason we are here.  I remember being told following the surgery to one breast that they could do the same to the other to re-balance the size. It didn’t have any impact at the time, I was too consumed, reeling from my (and my family’s) shock of the situation but, reflecting much later on my journals, I read into this that they must think I might live long enough to have that done.

Based on my experience and my individualised needs what would have served me better was some element of hope and a future.

Conversely I found hope and a focus on future in abundance across the range of my non NHS support. The significance and impact of living with fear is highly underestimated in our NHS system with little or nothing done to address it.

For me I believe receiving my results by post and then having a follow on Skype consultation in the comfort of my own home (clearly only possible where no physical examination required) would help to address much of the fear associated with attending clinics, sitting waiting in nervous anticipation as the clock ticks endlessly round, often past your allocated time – so much negative energy used up. Energy needs to be preserved for keeping well and enjoying life, for living well with cancer, not drained from us as part of the process.

Sophie Sabbage is so right (for me anyway) about getting sorted on the fear front. For anyone who has not read THE CANCER WHISPERER (either in the capacity of a health worker, patient or carer) I whole heartedly commend this book to you.

Thank you Sophie, I continue to work on it, for my family and I. With love Liz xxx

The Cancer Whisperer: Finding courage, direction and the unlikely gifts of cancer

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