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!!!

Seize the day?

I started the week in London, visited Glasgow twice and now I'm back in Edinburgh.Phew! I am feeling quite relieved my stamina has held up. It's not all been easy and I am done each evening, tearfully tired would be the expression that comes to mind, but I recover. There's been a laughter filled evening with family and friends and touching moments between my mother and my daughter, the precious times in life in one week, no less.

Our One Day campaign continues to gain attention, with Stephen Fry tweeting about it. The twitterati indeed! And at the end of the week we had an great photo call at Hampden ( national football stadium , don't you know) launching a partnership with Scottish Women's Football. Nicola Sturgeon the Cabinet Secretary for Health and Wellbeing loaned us her support, knowing such partnerships are great ways to get messages out about detecting cancer early. We were both awed by the young footballer who joined us. She looked fab with magenta coloured hair and wowed us with her talent with a football. Stand back guys, the women are gaining ground! Not sure I could pull of the hair colour but I admit to being tempted.... And look out for the first Deputy First Minister with pink hair maybe? The partnership is to raise awareness of how to be breast aware ( our TLC campaign see www.breakthrough.org.uk/TLC for details ) and promote knowledge of the risk factors for breast cancer too.

Physical activity is an important part of reducing the risk of breast cancer so anything that gets more women out taking exercise is potentially life saving. Its something I too want to get back to. The last year when I have been less well and therefore less active I have shall we say become more cuddly! I remember years ago reading the column of a young journalist dying of breast cancer. Her talented writing and very black humour made me laugh ....and cry. One of her quotes has stayed with me, "it's not over till the fat lady's thin". Brilliant black humour and also acknowledging a painful irony that many fellow travellers will recognise. Cancer doesn't generally deliver better cheek bones but more often the  treatments and the impact leave us feeling overweight, with yet another unwelcome impact on the self esteem.

But there are worse things for me than this and this week was yet another reminder of that for us. A friend of ours has been diagnosed with cancer again and this time it's inoperable. It's devastating for them all. Plans for a recent retirement anticipated and now dashed. I went to tell someone I know and found a fountain of emotion emerging from somewhere very deep. It's hard to put it into words, even as I write. But one thing I did express was my wondering how long I will "get away with it". It tells me I can take nothing for granted. And maybe that's a reality check I needed. So this weeks message for me and mine is seize the day. And be alongside those who aren't so lucky, if you can, it will make a difference for them.

Reasons to be thankful. I survived and enjoyed this last week and feel more like Audrey! Our holiday, which includes time with the family in Bulgaria in our little piece of paradise is less than a month away. If you say that quickly it sounds soon:-) And we are making plans to get a dog, oh yes, but say nothing to Koshka please!

"Strumming my pain with his fingers?"

"For most people going back to work is a welcome distraction....the thing is its not for you", the words of my doctor when I saw her last week. So we then talked about how I could look after myself, given the complexity of my situation. Pace myself, knowing when I may be vulnerable and stepping back and so on. Well rehearsed plans to put into place. And in many ways it has been a great distraction. Anyone who visits our office recognises its bright welcoming dynamic and the warmth and friendliness of the team. It's great being there. We have laughed too.......not least during the discussion about the new Irn Bru ad. I really can't repeat it ( no really i cant!) but suffice to say it made  me laugh so much I coughed and wheezed! Great therapy. 

 And it's been in many ways a hugely successful week in which a new Breakthrough Breast Cancer campaign we launched received great plaudits , capturing the hearts and minds of not only supporters but leading peers in other charities. Fantastic affirmation to a hard working and creative team and  wonderful supporters too. The short film thats part of our "One Day" campaign is so good at getting the message over. Yes it's so good it's one I need to watch in private really. 

As I have thought of this and my doctors words of how to protect myself, a song has come to mind a few times. Its a song written about Don Maclean by a songwriter called Lori Leiberman. The sound track of my youth was the Roberta Flack one. Do you know what it is yet?! I hesitate to say the title, as it feels too strong but some of the lyrics really do resonate. Perhaps the line " I felt he found my letters and read each one out loud" and if I am really honest so does "strumming my pain with his fingers". It's those core fears as someone described it to me recently. The quote " being there for the key milestones in your children's life "  is my undoing each viewing of the film. Here is  the link to "Killing me softly " story. http://www.don-mclean.com/killingmesoftly.asp. It's worth a look and maybe helps explain the link for me at least. 

But back to the Breakthrough "One Day" campaign. The power of that film is such that I keep thinking about how we can use it as it tells the power of our work so well. And of course on these occasions I will stand up there introducing it and see the impact .......and try to contain my own. I took part in the filming when I was off recovering from surgery and as I approached it , struggled with the dilemma of which hat I was wearing. But the truth is its all the hats....I need my own special hat designer for this job really.  There isn't a template on how to do this and in the last year I have been doing my best to walk the line of balance but it's not easy. So has my return to work been a welcome distraction? Absolutely! Have a been able to protect myself.....mmmm jury's out. Here's the link again to the one day film and how to choose your one day, if you would like to? Mine is Sept 1, and I am proud of that. http://oneday.breakthrough.org.uk/ 

Reasons to be cheerful. Heading to London on Monday so I will see my colleagues based there too and I am really looking forward to that. My daughter is on a flying visit soon. We have booked a meal together with friends at a vegan friendly Vietnamese restaurant ...wow that should be fun! Having visited Vietnam we know the beauty of the country and eclectic variety of food...and great coffee too. Can't wait, good times with people I love.

One Day?

Hi ho, hi ho.......yes it's official, back to work on Wednesday. So I am terri.....no, no ....delighted! Oh well maybe a bit of both if honest. So I have been doing a bit of preparation in anticipation of returning to work. Given the "summer" weather i have been in search of a raincoat and successfully chose one that matches the new sandals.....a Scottish summer outfit! But honestly I have been thinking about other things other than haircuts and outfits.

I have also been thinking about the campaigns we are going to be working on shortly.  In particular our "One Day" campaign is at the forefront of my mind. We are asking our supporters to choose a day that is significant to them and to support our work by raising the money to fund the research unit for one day, a significant sum of £2,200.

Yes that's a challenge but we know that many people hold a day that's so significant to them , maybe a birthday of someone special, an anniversary of treatment finishing, a day they were diagnosed; and they relate to being able to commemorating it in this way.

So the question for me is, what would be my one day? With breast cancer playing a significant role in my life for almost 18 years which day would stand out? When I was diagnosed initially it more of a process than a day, with a slowly dawning acceptance of the diagnosis. I can't put a date to it....just an emerging, growing fear over a very scary summer. The end of my active treatment was followed shortly by the death of my father. To be honest that is not a time I want to recall. It was such a sad time that the relief of finishing radiotherapy  was overshadowed by grief and also a fear that my own future lay the same way. There is the date I finished tamoxifen. Perhaps not a stand out day but certainly one I met with glee. The remaining tablets were smashed by a rolling pin and thrown into the bin with relish. Yes a small celebration but it did feel good to be free of its side effects and to enjoy the significance of the five year survival.

Another date that stands out for me was the death of my friend who had supported me after my first diagnosis, she herself having travelled the same journey with breast cancer a couple of years before me, also just in her 30s. My daughter in her teens by then was first to hear that she had gone on to develop lung cancer and understanding how upset I would be, even tried to protect me from that information initially.  I remember vividly the shock, the sadness, the fear for her and her family. And when she died it was devastating .... I remember that day well.

And I could go on as there are many more dates when breast cancer has impacted on my life, but you get my drift , these dates aren't ones I want to commemorate. But the one that is , is the day I first started working at Breakthrough Breast Cancer. Sept 1st 2008. That day I came into post and set up the organisation in Scotland. It allowed me to use my professional experience to date to set up an organisation I admired greatly in my own country.; a fantastic and exciting challenge. And perhaps equally importantly for me it's the day I was able to change all of the impact breast cancer has had on my life and my families life too, to a huge positive. To work with the great team I am part of to campaign for prevention, earlier diagnosis ,improved care and treatment and support the first and only dedicated breast cancer research unit here in Scotland is an honour for me and hugely important for our community.

And it's that that keeps me going with my latest diagnosis ( Easter 2011). I guess breast cancer will always play a significant role in my life, I am accepting that now and also that is maybe not finished either. But Sept 1st 2008 was the day I was able to fight back and believe me I haven't finished with that fight yet! A fellow breast cancer blogger shared the Emile Zola quote " if you asked me what I came in this world to do, I will tell you ; I came to live out loud". Oh yes, I love that quote.

Reasons to be cheerful. We have great supporters and also we hope this new campaign will attract more people keen to support and champion the great work we do. We can't do our work without that support so please share this campaign. I would love to hear about your One Day too.And if you can at all please  do think about your "day" and join with us in the campaign to support our life saving work at Breakthrough Breast Cancer. I know I will be. My real hope is that "one day" I will be out of a job........now that would be the best day to celebrate , the day that no-one dies before their time and the future is free from the fear of breast cancer.For more information and how to sign up your own day, look at the website on.  http://bit.ly/LzZcZg