Tales of the ordinary and pink castles!

It's wiser person who listens to advice than gives it.....I read that today and it made me think. How receptive am I to advice? The honest answer would be not always. I respond better when given choices . And challenge on my blinds spots , I do welcome....on a good day with the wind behind me! Am I tempted rather too often to give advice like Moses delivering the ten commandments? I hope not but I guess I need to check that out! So why did that resonate just now? Because I am trying at the moment to get the balance right on how to recover and get stronger and give my best to a busy job....and the realisation that the only person who can get that right is me.

We are all individuals and it's just as true when it comes to our healthcare.

A meeting I was part of recently explored the importance of holistic assessment as part of care. And as someone who trained as a nurse 30 years ago ( yes it's true, I had to count it on  my fingers to check if that could really be true!) I see the value of a holistic nursing assessment to inform treatment and care.  Not only do people with cancer  have other conditions like asthma or diabetes for example but also what is their social circumstance, what would be the best outcome for them? There is such an important role for nurses enabling person centred care, acting as advocates and sign posting for ongoing support. We have been talking about this for a long time...let's hope the focus on person centred care in the quality strategy in Scotland might actually help this became the bigger priority it needs to be. Care centred around the individual is the safest and most effective surely? 

 Earlier in the week I  attended a dinner for voluntary sector leaders on social media and the role of the CEO. It was a great presentation by Louise MacDonald CEO of Young Scot (@louisemac), encouraging others to get involved with twitter. Like i need persuaded! But i was keen to learn more.The aim is to be accessible and authentic she said and it struck me that that was also true of being a leader in any setting. And social media definitely enables that. Through my blog I have connected to people locally I couldn't have done in other ways i suspect. And I have connected with an amazing community across the world too. I love that. I am inspired and moved by all of you who I connect with.

Marie in her blog Journeying through Breast Cancer (@JBBC) has invited us to celebrate the ordinary each day this week. My energy and workload has stopped me doing anything other that enjoying others contributions, but they have been insightful, thought provoking and creative. Impressive indeed.

Reasons to be cheerful are in part celebrating the ordinary but also the special too. The ordinary is that in order to manage my energies I have allowed myself some pink dressing gown time and as regular readers will know, this makes Koshka very happy as you can see:-)

And the special is I attended the Edinburgh Military Tattoo. Now I am by instinct a pacifist but I  can't help but be moved by bands of pipers not just from Scotland but across the world too,  fabulous highland dancers, drummers from Switzerland and many more .The special moment for me was as the massed bands played Highland Cathedral, the castle was lit up pink, as the above photo shows. It triggered a memory of a very special evening when  breast cancer awareness month was launched from that very castle two years earlier. As I sat with my good friend who  has also had breast cancer , I reflected how important it is we continue to raise that awareness at Breakthrough Breast Cancer, so more of us are here in the future to share special times.

Is this person centred care?

A week is a long time when you are back from holiday is it not? And this one for me was a bit of a roller coaster I admit. It’s a tale of two halves, one of person centred care and another of being a tourist in your own town.

So are you sitting comfortably?

This story begins with back pain. A thing to fear for those with a history of breast cancer I think its fair to say (one of the many lets be honest). But I have been down this road before and know many other reasons exist for back pain and found a variety of solutions from pain relief, to physio’s, zumba(!) and yoga over the years when I have had a problem. But just prior to going back to work I could feel something build up. I went for massage and it nearly killed me (ok drama queen language there…but it felt a bit like that,honestly). And as I returned to work I could feel I was getting worse. I rationalised (just tired, getting match fitness back etc) and thought I would wait to see how I was on holiday. Worse again. Its swimming that’s doing it, again rationalised and made a plan for self referral to physio. My husband (he of the long suffering variety) suggested I needed a proper diagnosis first, instead of an Audrey knows best approach.

SO when I went to my follow up from surgery appointment with the plastic surgeon I asked if I might have a quick word with the breast care nurse. I thought she could help me think through how best to approach it. Mention it to the surgeon, she said. What the plastic surgeon? Yes indeed. Now I didn’t help matters as I turned up in the morning instead of the afternoon, not sure if that was a CRAFT (see previous blog for explanation) moment or their mistake. I offered to come back knowing the pressure on them all but no, they found the surgeon and he saw me. Sorry I cancelled my surgery, I grovelled. No worries was his reply…its totally lead by you. We can do it anytime or not at all. Really, said I, I am more concerned to get my back pain sorted than matching boobs at the moment (ok I might have phrased it differently but you get the gist). And so he examined me, reassured me he felt it was likely to be unrelated to the breast cancer, given my early diagnosis both times, but as we know breast cancer can behave unpredictably. The only way to know is a bone scan, what did I think. I admitted to having mixed feelings as I know this triggers anxieties and procedures that frankly aren’t much fun. But on balance the scan would give me information I could then act on. That’s when the breast care nurse again stepped up and she organised the scan.

It was two days later….I thought I would wait weeks. I was welcomed, talked through the procedure and put at ease. Drinking large quantities of tea, coffee and water is not something I normally find a challenge but somehow being told to in two hours makes it so. Also being radioactive and therefore having to avoid pregnant women and children is tricky in a hospital environment. I don’t suppose the woman I kept moving away from while I tried to get served with yet another cup of tea reads this blog, but just in case…its not you!

I am delighted to say all was well. Yes there is an underlying cause of the pain but nothing concerning. But what I really wanted to share with you was just how cared for and supported I felt yet again within that service. So what stood out? I was listened to, they didn’t trivialise my concerns, they were flexible, they didn’t make me feel bad turning up at the wrong time, they didn’t say “that’s not my job”, they engaged me in the decision making all along. The radiographers took me through a scary procedure with information and kindness. The breast care nurse warned me not to worry if they did two scans: they did, I didn’t…much! They provided a safety net with plans for information and follow up. This was a stressful time for me as you may guess but how they supported me through it made a huge difference. This is true person centred care. 

As part of the Quality Alliance Board for the NHS in Scotland I know there is an important focus to improve person centred care. It was good to experience it in action. Feedback in all its forms can enhance this. Breakthrough Breast Cancer’s Service Pledge gives feedback on what works well as well as what to improve; both are important drivers of change. The third sector has an important role to play in this, facilitating the patient voice to enable and to motivate. But for now, the breast cancer services in Lothian, take a bow!

So as the relief sets in with the outcome of the bone scan I now need to refresh my getting back to match fitness plan. The return from holiday was always a risky time, when my energies would not match my expectations. So I am building in ways to pace myself and also build my strength in my recovery. A marathon rather than a sprint I am learning.

Reasons to be cheerful. Our friends visit and the Edinburgh festival provided great distraction, fun and support while I awaited the result. We went to a fabulous exhibition about Catherine the Great, watched street theatre (the cheeky puppet above being my favourite), went to the art festival (tapestry exhibition at Dovecot studios was superb) and later after a rickshaw ride down the Mound (help!) found a free comedy show. The last act was a North London Jewish refugee (from south London) …his joke not mine… I leave you with my favourite joke of his: Older couple, the wife calls down to him, “will you come upstairs and make love to me”…his reply “I cant do both”. Laughter is great therapy, is it not?!

In search of mojo......

Two weeks in and its an ongoing search for the elusive mojo. But precious time with family, relaxation and time just to be ,is working some magic.  The days are lazy and evenings star filled, with some Olympics thrown in! In fact we have worked out how to sit outside and watch Olympics through a patio door as its so warm. Yes you guessed I am not in Scotland but rural Bulgaria, a very beautiful unspoiled part of the world. Our small house looks out to the Rila mountains and as I write a fine storm is rattling around the valley. Jacko the shepherds dog is a frequent visitor and is waiting at the door in the hope we will break our resolve and we will let him in because of the rain. Soft I may be but I haven’t lost my sense of smell…..so that would be a no my friend! As I mentioned last year Jacko has had one too few visits to  the poodle parlour and too many days shared with the sheep. A deep breath and you too could smell him I am sure!

But even if wet smelly dog is a step way too far , the rain is welcome. Its very barren here thanks to a very hot summer. The last week has seen temperatures of over 40 degrees. What I have really realised is how simple life becomes at these temperatures; the most important focus becomes access to water,  shade and a cool breeze. So its not party central as you will have guessed but a real chance to recharge and reassess the important things in life.

So I have mindfully taken in the views, listened to bird song and relaxed with those I love. And as give in to the different rhythms of life here it helps me also think about my own priorities and plans for the months ahead. A friend helpfully described recently that one of the benefits of the deep fatigue that illness and treatment can bring is enabling you to recognise what and who is important to you. And perhaps as important who and what you can let go of. Who and what does or doesn’t help you thrive as you need to, who and what makes your heart sink rather than sing, and who will always or never be there when you need them? A small consolation maybe but a valuable one so that you can move forward in your life with the people and things that enable rather than disable. This is so important when your energies are limited.

It does seem rather ironic to get lazier while watching our amazing Olympians. We managed to find somewhere we could both swim and watch Andy Murray in the fantastic rematch with the wonderful Mr Federer. I admit to shedding a tear as Andy won so convincingly and ran off to hug his girlfriend and his Mum. People like Jessica Ennis and Sir Chris Hoy are wonderful role models and if twitter is any reflection there are many bikes and running shoes being dusted off. But I would be lying if I said I was rescuing my lycra from the back of the charity bag.

So many people I know are facing their own personal marathons; be it chemotherapy , surgery, accepting new diagnoses and consequent changes to their life etc. They aren’t Olympic sports, there are no medals to win just long, often arduous months to get through. They too are my heroes, who do this while looking after families, keeping jobs going when possible, running businesses, caring for partners and parents too. So I cant sing your national anthems or present you all with flowers but I salute you all. And remember  don’t try to be heroes without help, after all the athletes did not achieve their success on their own. So surround yourself with your own cheerleaders and coaches to get you through would be today’s best advice.

I recently heard this tale about a friend, herself in the midst of challenging treatment. She apologised to a local shop keeper for forgetting her order, a senior moment she explained. A woman at the back of the queue piped up “ I call them my CRAFT moment”. Craft moment she asked? “ Cannae remember a f****n thing” she explained. It was pure Glasgow! As I return to work next week, following some extreme laziness I fear the odd CRAFT moment myself, be kind to me if you notice any please….
Reasons to be cheerful. The Edinburgh festival is taking over now and while that holds frustrations for locals it is manic and wonderful too. We have friends coming to share it with us too. Excellent!

Reasons to be proud

                                                        After the storm
It is estimated that there is one woman diagnosed with breast cancer every eleven minutes in the UK. Yes thats right one person, their family, their friends, their colleagues knocked side ways by the diagnosis, every eleven minutes. And sometimes in my job it feels like I know them all. Of course I don't but it's a rare day when I don't connect with someone who has just been diagnosed, heard good or bad results, lost someone they love and all the shades in between. Breast cancer after all is called a common condition, it's impact felt by many and on every one of these occasions there is a tough road to travel. Our work in Breakthrough helps to make some of these roads a little easier I hope and also very importantly gets better outcomes for them. But we also want to prevent this happening to more people.
 

So why am i saying this now? Well for two reasons. Recently I got an update on the world leading Breakthrough Generations Study , the study following up 100,000 women for 40 years to help us better understand the causes of breast cancer. Fortunately we don't need to wait 40 years to increase our understanding either, already the new information is coming through. We know about more genes involved, we understand more about the impact of obesity and sex hormones after the menopause, we are building the jigsaw day by day. I feel very proud to play my role in helping this happen. Epidemiology is a very accessible science so hearing the progress is incredibly exciting. And of course with my history it feels personally important, especially to understand risk for my family. So in Breakthrough we have produced Family History Guidelines too. They are based on our current knowledge and so useful to those of us who may worry about this very subject. Many people over estimate the risk to family members but perhaps others under estimate it too. Here's the link to help you know more.Family history guidelines

 
And the other reason is I know even with my early diagnosis it has had an impact I cant just ignore. Prevention is better than cure, it's something that trips off the tongue, doesn't it? But I wrote some of this sitting on a train and fighting a headache that never feels far away just now,a daily reminder of my current struggle with my health.  And when I read so often of how fellow travellers too are felled by the impact of diagnosis, treatment and the disease itself I know it is so , so true that even with a succesful outcome, breast cancer takes a huge toll, both physical and emotional. So yes prevention deserves our focus and resources.

I have made the decision to delay the top up surgery I was recommended to have next month. Its not the right time for me, I know in myself. I need to feel stronger and also I need to get on with my life. I am not saying never but thats what I am thinking.Its good to have made the decision finally. Another step forward of sorts!

 
Reasons to be cheerful. My holiday is here, not only offering precious time with those I love but also in a beautiful, restful, healing place. I have shared an image of the mountains nearby, after a storm. Seems appropriate somehow.

Also the opening ceremony of the olympics was full of surreal images and heart tugging links to what it means to be from the UK. Not least the hommage to the NHS, what puts the Great in modern day Britain indeed, the symbol of compassion for all.I get a tingle as I write it, its a proud one! One worth celebrating for sure.

                                            Olympic joy!

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Its how the light gets in....

                                 Ring the bell that still can ring

                                  Forget your perfect offering

                                There is a crack in everything

                                  It's how the light gets in.

What do you do when you are stuck on a train? If you are me you read, tweet, email, text, listen to music and that's just the first  hour! After six and a half hours and approaching home I was falling asleep and I asked twitter for help,the train was going on to Aberdeen but I wasn't....I hoped. Sing and set your alarm both useful suggestions. I'd just been listening to Leonard Cohen and a singalongaleonard would be an unwise move, not least for my fellow passengers. But I arrived eventually exhausted and reflecting again on the balance of my life; that would be lack of it really.

But i was up the next day for a breakfast meeting where I enjoyed a wide ranging discussion on health and social care integration.  Yes really! We discussed that loneliness was the fastest growing long term condition, living longer in single households an important factor but also how our communities function. Our lives so busy, so insular, so unconnected. It has stayed with me as has the need to prioritise solutions to this.

And this discussion happened in the context of me knowing that through social media, but twitter especially , I connect to a breast cancer community. A community often who too are ill  and isolated through their illness and fear. And their stories, though blogs and twitter often strike a cord, a connection but sometimes too hold my own fear to the mirror. Inspiring and reassuring often; frightening, on occasion. But that is this world, it's honest and it's real. And my guess is it helps many.So maybe some of us don't see our neighbours but we connect across the world to fellow travellers in such a wonderful way.

And you can choose to engage or not. No requirement to have the make up on, put on a face, when you just can't. But equally if you want to bury the whole thing in a cave and leave it behind ,you can do that too. Just this week I saw the power of twitter to offer support to someone newly diagnosed in such an immediate way. I am moved by the kindness and compassion I witness. Go twitter....!

Yes social media can connect the wounded healers and the wounded in so many ways. Ways in previous life times would be unimaginable. We can't go back but maybe we can look forward to connect through digital means which help a little. Although a life without a hug would be a sad one indeed. Let's not forget that.

Reasons to be cheerful. I was introduced to the TV comedy Twenty Twelve this week and really enjoyed its wry take on the run up to the London Olympics. Way to go! Also in order to attempt to address work life balance (ha) I went to great concert in the Jazz and Blues festival here. The last song was about the Mojo....oh yes I remember that. Wonder where I left it? And I have been listening more to music, mindfully. It's been really helpful . The Anthem by Leonard Cohen is with me as I write this blog, hence the quote i began with.

Just Pufflin along, then the phone rings...

You know in that moment when you notice your mobile phone has three missed calls in a short space of time, that there is something wrong. And there was. Someone very dear to us had had a heart attack. Your own heart stops too for a moment until more details emerge. Then as the details emerged we were reassured that it was a mild one and with the right care and rehabilitation all will be well. Thank goodness. And as I write she is home and doing well. Yes that's right, she. Did you assume perhaps that it was a he, as I said a heart attack?

Because women do have heart attacks and often underestimate their risk. What is important is that all women are knowledgeable about potential risks to them and the impacts on their health and know how to modify their risk where possible, whether that's breast cancer, heart disease or conditions like diabetes. And the good news, in a way, is that keeping active, keeping your weight down, not smoking and watching your alcohol intake will help reduce risk of all those conditions. We also need to know the signs and symptoms in order to be diagnosed early. As in breast cancer, so it is with heart disease, an early diagnosis is important for good outcomes. Here are the factors to look out for at BHF Heart Attack Symptoms.And here too is our TLC campaign. Knowledge is power remember.

Comparing heart disease with cancer also raises the issue of cardiac rehabilitation. It is now built into care, every person following an event like a heart attack, is encouraged to take part in cardiac rehabilitation. This is aimed at re-establishing emotional and physical well-being, understanding the need for both. How much of a reality is this for people recovering from cancer? I suspect it's the lucky few who get a programme of care at the end of active treatment. The evidence base is certainly building for women with breast cancer of the benefits of physical activity. Without this so many of us will not return to full health with all the related impacts.We need more evidence to understand fully what people need to do post a diagnosis of, and treatment for, breast cancer and then ensure they all have the opportunity to take part in it. As in any illness of course some of it has to be down to ourselves to do those things to manage our way forward and to care for ourselves.

And I do write that with not a little sense of irony. Recognising that since I have gone back to work I have been less able to care for myself; to walk, to relax, to have time to smell the flowers. And I confess yesterday I set off to work without any make up on........yes that's right, no make up!!! I nearly checked myself straight in to see the doctor. That is a very serious sign in my world. My family are highly entertained and alarmed in equal measure. And the conversation in the office was, if your partner noticed would they dare say anything ( mine was out at the time). The consensus was ...damned either way. Sorry guys!

Reasons to be cheerful: So glad to have a happier ending to this week. Long may that continue. I am off soon to a lovely part of the Lake District. I hope it ,at least, doesn't rain . It will be great to see family and have a bit of time to not only smell the flowers but also look at the hills too.( not planning to climb any!). Close to home the local sea bird centre has asked people to look out for pufflings that may have been washed out of their burrows by the floods.So I am on puffling alert too!

To see oursels as others see us?

Going Nowhere....

I have had some really uplifting feedback this week . In particular the blog from Jayne Cox who  is woman I have met on twitter on jaynemcox,  a coach for women especially those with confidence issues and she asked me to be this months WOW woman. It stands for woman of worth and I guess any other complement is in shadow of that. She asked powerful questions and my answers to those make, I think,  a moving blog. A local journalist too did a very perceptive piece about my story and our important work. She entitled it "when the helper needs help". These experiences and others have made me ponder on self perceptions.

Because my reaction is the most telling thing of all. When my doctor was recently summarising my medical history she said "so you have recurrent breast cancer and severe asthma". I was shocked, really shocked. No I wanted to say that's not me, I've just had a bad spell, the cancer was very early, I will be fine soon. And then I reflected on her words and thought, well I guess that's why I am feeling as I am. Duh! I hear you cry but it's just that I don't see myself as a sick person and don't want to either. Tempting though it is to find an appropriate chaise lounge and demand peeled grapes ( or Percy pigs or mini poppadums even!) I much prefer to get on with life. But when the story in the Evening news came out entitled "When the helper needs help" I could see my colleagues wondering how I would react. She won't like that title ..writ large on their faces. But hey I took it on the chin.....the article is lovely and covers our One Day campaign. Happily the on line version has no photograph , a bit too much of a close up for comfort.

And there are other  perceptions that need challenged. Legionnaires disease has claimed three lives in Edinburgh this summer ( what summer ?) and many more have been unwell as a result. Others of course have been very anxious and the authorities deliver advice and reassurances. The one that always gets me is the one that seeks to reassure by stating those most at risk are those with underlying health conditions. And I have to catch myself feeling a little reassured for a moment until I accept my and many others reality. Hang on a minute there, over 2 million people live with long term conditions in Scotland. And almost 4,500 women are diagnosed every year with breast cancer alone . And their treatment even will meet with definition of a long term condition, not to mention the ongoing impact of living with a cancer. The imminent risk from legionnaires disease is passing thankfully but take a thought next time there is a public health risk before those with underlying health problems are  casually written off please. Their need and risk is greater and the appropriate advice needs to be tailored to them too, let's remember. OK I feel better having got that one off my chest!

So I am glad I got through this week and it's had some great highs but lows too. Not least the thundering headache I fought for a couple of days. As I traveled back home from work  I found myself fretting about how I was managing my well-being on my return to work. As I walked through the door I saw a bunch of flowers from a friend with an eerily timed message to take time to smell the flowers. An important reminder to do that and I know if I'm honest I'm not doing enough. Important note to self.

Reasons to be cheerful. It's simple I have such good people ; family, friends and colleagues in my life and I value them every day. The weather here has been so bad its having a serious effect on the cat. He is "getting " fat. The daily trying every door in case its not raining outside each one is his only exercise just now. Its the only thing that makes me laugh with regard to the weather.........Oh and Andy Murray is in the final of the tennis.....fantastic. We are meeting friends but aim to tape it and watch later. So no spoilers please!!!