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!