Saturday, 29 December 2012

Open your eyes and look at the day.

"If you wake up and don't want to smile
If it take just a little while
Open your eyes and look at the day
You'll see things in a different way
Don't stop thinking about tomorrow"

The year is drawing to a close and like many I am casting my eye back and reflecting. As I made plans with my family for the year ahead I mentioned "I won't be having surgery this year" and I realise how this has punctuated my year-and the previous one. In a year where I faced major surgery and had times when I was investigated for lung and bone secondaries it's such a relief to say that. My recent visit to the clinic and negative mammogram means I now have a clear run for another year till my next appointment. This is partly because I have declined further treatment but I have done this with knowledge and its my decision which I can change at any time.

My decision not to have further surgery is to protect my wider health and perhaps because for 18 years I haven't been symmetrical, maybe it's just who I am now? The time it will matter most is when I buy a new bra. And readers , that time has come. Yesterday I did a bra amnesty. Ugh! I have one that fits and around 15 that don't. They reflect the ups and downs (!) of the last two years. There are functional ones ( pah) and attempts to cheer myself up ones but they don't fit. The best one I bought in breast cancer awareness month , when a significant donation went to Breakthrough. It seems fitting somehow, no pun intended...

So soon I must brace myself to get back into the lingerie department. And much though I dread it, want to scream at some one, want to punch attendants if they mention chicken fillets ( the women can explain if you don't know about these) ....I know I can't buy it on amazon. Perhaps this isn't the week as I am now on antibiotics for a chest infection and the emotions are close to the warned.

The other treatment I discussed was tamoxifen or similar. I was on it five years previously and know the side effects can really affect your quality of life. I stayed on it because I knew the research and my children were young, I took no risks. But recent research had pointed to the benefits of taking the drug for 10 years. So having declined it last year I thought I should revisit it.

And we talked it through. I learned there are some indications that smaller doses, different regimes and so on can reduce risk with less cost to the person. But that's not  common practice yet as the research isn't complete. How hard it must be to have that research funded. After all the drugs companies want us to use more not less, charity funders tend not to fund this kind of research, do governments then need to take up the mantel? After all this is about life, both quality and quantity and both are important. But in the end armed with the information, I still decided not to take it. My cancer was early and so on balance of risk to my wider health and quality of life ,I know it's the right decision.

The surgeon supported me with the words." The role of the doctor has changed, we no longer tell people what to do, we give them the information and support them to make the right decision for them". I wish we could clone him! He absolutely gets what person centred care is.We need more like him.

I am therefore approaching 2013 unfettered by imminent treatment and beginning to feel able to move on. That really feels good. As my life transitions into a new phase in January that knowledge is liberating. I can almost let myself be excited about the future again. But more of that in my new year blog.

Reasons to be cheerful. We had a wonderful run up to Christmas with family and Christmas itself was lovely. Good company, good food and beautiful walks on the beautiful Balmedie beach. Perfect. And Cara the pup was on charm offensive, she was indeed a wee star! And the quote I started with is a Fleetwood Mac one. Hope the song lifts your day as it did mine.

Vintage Fleetwood Mac

Sunday, 23 December 2012

A heartful Christmas

It's been all quiet on the blogging front for me. A combination of rushing around, seeing family and a rotten virus. My creatives juices are in a hanky and my cough is frightening the puppy.....and me. My pre Christmas preparations have been fueled by paracetamol.And I have greeted friends with air kisses!

But there has still been lovely times with family and colleagues; I even managed to get some dancing in! Cheesy Christmas tunes in a venue overlooking the winter fair in Edinburgh sealed the deal. I loved it even if the evening may have secured me a new nickname following a comment from a dancer who chose to join our merry band. No ,not telling you, I was unwise enough to tell the family and am suffering the consequences!

And the week when ancient calendars predicted the end of the world , for some people their own world did end. I am thinking especially of the shooting of the children and teachers in Connecticut. I cant watch the news coverage of the town preparing for funerals rather than Christmas. Words aren't enough and I just hope that this tragedy is a beginning of change within the culture it represents.

Like many here it has triggered memories of similar and more local events  in Dunblane. A pretty town in central Scotland. Where such events should have been unimaginable. And I was working as a nurse in my own town when it happened. I found myself picking up the phone to the primary school my own children attended, in a very similar ordinary middle class town in Scotland, to check all was well. Even as I phoned I knew it made no sense but like every parent I thought well if it happened there it could happen anywhere. They were of course untouched in our town, but like us all, they were changed. It changed our gun laws and our child protection laws, we lost our sense of innocence as a nation.

And people's lives move on. Happily for Dunblane one such person is Andy Murray. Whose profile as a world leading tennis player has changed how people now know Dunblane and how welcome is that. Those affected got through by supporting each other, a lesson to us all in surviving hard times. I see such compassion and support in the breast cancer social media and blogging world and it lifts my heart.

The  run up to Christmas is always hard for those who grieve, who wonder how many Christmases lie ahead for them,  who worry about money, who are lonely. In our increasingly isolated worlds, single person households growing year on year, how many will spend this festive season on their own and shut out from a world of seemingly endless partying and excess? So ,if you can, reach out to someone you know who may be finding Christmas hard. If we all did it, what a difference that would make.

Reasons to be cheerful.
This weekend I have my family together and although I am frustrated by my current virus, I am really loving it. And Cara is currently sporting a rather jaunty neckerchief! How cool is she?

And finally wherever you are and whatever your beliefs i hope you have a heartful festive time.

Monday, 10 December 2012

A true partnership...or time to boogie?

Yes its beginning to look a lot like Christmas. The lights are on around town, the mulled wine is flowing and families tempted by excess, lured by snowmen to show love through their gifts, look in equal measure exited and stressed. Or is that just me? The juxtaposition of the Christmas pressures and the deepening economic challenges in the country make this a hard time for so many. And if you factor in serious illness or loss it’s a potent mix.

Every nurse can tell you of a patient who hung on against the odds to get to Christmas, to wait till a child arrives from Australia, to see a child perform a Christmas play…you get the drift. The poignancy of these occasions is without comparison. And people in the main do cling to life, their definition of quality shifting as illness advances ,but time with those we love are always top of the list.

And its this that drives much of the access to medicines discussion. But let me say this isn’t just about medicine. We know that surgery and radiotherapy are important parts of life saving or life improving treatment and lets not lose sight of that. But its access to medicines that have become the focus of recent times, particularly in Scotland. Amidst the complexity of the debate, there is consensus I believe that the current system isn’t working equitably across the piece. The bête noir of government-the post code lottery-remains, despite well intended efforts to change that. No one system changes that currently. But if we want to change it in the future my belief is following some key principles will help get it right:

1. Keep it simple! Healthcare teams are incredibly busy. Any system that overwhelms them further will create implementation fatigue and resistance.
2. Publish and be damned! To deal with issues of equity and implementation make it a transparent and a publicly accessible process.
3. Communication, communication, communication! Tell people about it, how to access the system and ask them (the recipients) if it’s working.

Ok maybe that’s a challenging approach but if this is a true partnership with people offering and receiving care there needs to be trust. As any fan of Strictly Come Dancing will tell you to succeed and develop you have to have confidence and the right steps in  the right order. And that trust needs to be earned by all involved. The research we fund at Breakthrough is all aimed at improving outcomes, either by preventing people getting breast cancer or stopping them dying from it. In order for that to be successful we need to ensure that the systems are such that they ensure people then get access to innovative treatments, wherever they are. Our loyal and hard working supporters and all people affected by breast cancer deserve no less.

Reasons to be cheerful: it's the all Breakthrough Christmas party this week. So we are off to London for the annual bash. If I say it costs a fiver then your expectations will be suitably modified. The unspoken rule that the senior team leave before drunkenness ensues ( no I didn't mean me!)  is worth adhering to. Usually I am close to the oldest there but my permanent state of denial means I hope to get a wee dance before the night is over. If you see me limping next week you'll know I succeeded. Don't blame it on the sunshine, don't blame it on the moonlight.......blame it on the boogie!

Wednesday, 5 December 2012

Nice to tweet you! Info about a new tweet join

I wanted to share with you something really special that is happening tomorrow evening. We have learned from our friends in the US the benefit of tweet chats to disseminate information and build community in the way that only social media can. The immediacy  and connection so powerful. And I have often read the conversations after the event but never had the stamina to join it ( it would be 2 am in the UK and Ireland). Consequently we are keen to try to connect across Europe and create the space and opportunity to explore the important issues you share with us.
As my blog and others have highlighted many times breast cancer has an impact on so many aspects of life. But perhaps parenting and parenthood can be one of the most emotive impacts. Consequently this is the subject of the first BCCEU. Here is more about the context.

So please join us for this on line experiment and also let us know what you would want to discuss. I do realise parenting wont be the top of everyone's list but do let us know what is. I do know that for some women, breast cancer has robbed them of the opportunity to be a parent, a particularly cruel impact for too many. This kind of discussion helps to bring some of the hidden impacts into the open. That must help.
So looking forward to meeting and tweeting you on line tomorrow evening. And you don't even have to go out in the cold ( thank goodness) The hash tag is #bcceu and the start time is 8.30 UK time. Tell your friends!

Saturday, 1 December 2012

"You have to find joy where you can".

And so it begins, the beginning of the endings......and the hankies have been out. Although the week started with a Geordie style celebration of the amazing efforts of two men. Robbie Elliot and Phil Gray who had completed a 3,500 mile cycle ride in aid of the Sir Bobby Robson foundation and Breakthrough Breast Cancer. Newcastle had come out in style and I even got to sit next to the legendary Jackie Charlton.Any football fans I mentioned this to since have been very excited. I managed to spend an evening talking about managing Ireland football team and fishing as well as defending my family from Sunderland! It's an eclectic skill set for this job, you see?

I did a short talk about why our work is so important. And I mentioned Angie who is much in my mind just now as the anniversary of her death approaches. The cold Edinburgh December evoking that sad day as we said our goodbye. And what I repeated was her reply to the question...are you scared of dying? "No nothing can scare me after living with this awful disease for so long".I wanted to let these two brave men know that their mammoth effort was for such an important reason and it would make such a difference. The Newcastle crowd were so generous.......but it was a tough gig for a Sunderland supporter!

The next day I set off to London and had a flood affected journey. Never quite sure if turning back would be the best option. But I did want to get there to attend my last board meeting with Breakthrough. Perhaps I didn't fully anticipate how emotional I would feel. I know I am making the right decision and I'm really excited about my future. And it was only when I read about a friend grieving for her Mum that I recognised the process I am going through. It's grieving and I need to give it space...not lock it away, tempting though that is.

Others have told me of their emotions leaving their jobs because of the impact of their cancer diagnosis and I recognise that's part of it for me. Perhaps I would have made this same decision without the cancer? But the fact is I didn't and so it's in the mix. But I also recognise how very very fortunate I am too , to have choices.

So many don't either through the extent of their illness or through circumstance. I have found myself thinking of my friend who had lived with breast cancer many years before she started to lose the fight.Her colleagues wanted to arrange a farewell lunch as she finally acknowledged she could not return to her much loved career. She was dying and she knew it. But she also knew she could not attend a farewell lunch and give a speech. She declined the well meant offer and I can only imagine her own loss having made that decision and its implications. These impacts aren't in the survival statistics, they are hidden away, but they are so very real.

It was the last of my 8 week mindfulness course this week. We spoke of acceptance and recognising the daily small achievements we make and honouring them, not always striving for more or feeling guilty about what we haven't done. Another tough gig for me! But I have loved it and know its sustained me through a difficult time. Hoping to sign up for more too.

Reasons to be cheerful!
Well the week ended on a high. Cara had a walk ( off the lead) on the beach at Cramond on a beautiful crisp winter day. Magical! And we went to see Karine Polwart. I have quoted her songs in an earlier blog. She was superb and I leave you with one of her haunting songs about grief....for all you who are grieving. In Karine's words.  " I can find joy in the sound of the rain. You have to find joy where you can." Hope you find joy this week.