Friday, 30 December 2011

For Angie

I wanted to do a special blog today for a fabulous woman who died peacefully  just before Christmas. She was diagnosed 13 years ago with breast cancer and her last few years were a marathon of cruel symptoms, frightening diagnostic tests, worrying waits for results and ,lets be honest, awful treatments. She faced all of that with positivity, immense courage and 
startling lack of self pity.

We first met her when she indicated her desire to support our work in life saving research and in campaigning for a better future for people like her. She met with the team in Breakthrough Breast Cancer in Scotland and told her story. They were deeply moved by her courage in the face of such a devastating experience and uncertain future. She agreed to talk at our first Changing Breast Cancer event. She told her story calmly and bravely, catching with emotion especially when talking of her children, but never inviting our sympathy-just wanting us all present to understand why it's so important to change things for people like her in the future. A standing ovation said it all.

Later that day we all attended a reception in the Scottish Parliament. Angie was delighted to meet the Cabinet Secretary for Health and Wellbeing , Nicola Sturgeon that day as well as her own MSP , Malcolm Chisholm. The photographer captured some lovely moments for her and for us. In particular I recall an exchange about shoes ,a shared passion of Angie and Nicola too I suspect! -my own fab pink sandals having stimulated the discussion on that occasion. Her sense of fun and enjoyment in life so evident that whole day. I am glad we were able to give her the platform that day.....I will always remember it.

So today watching as her coffin arrived, a splendid pink one with fabulous shoes adorning the side, I thought , well done that girl. Going out with style indeed. The service was rightly a celebration of her life. She didn't waste a moment of it and  that should always be celebrated.  She had in earlier years done a trek in the Himalaya for Maggie's Centre who had been very helpful to her . And St. Columba's Hospice too was honoured for the great support she and her family had had from  them over several years.  

She had planned all her funeral including the music and she arrived to Circle of Life and we left to Everybody Hurts. Not a hanky was spared. But perhaps the moment with the biggest impact for us was when we heard her answer to the question- are you frightened? Her answer was -after living with this awful disease for so many years nothing on this earth could scare me now. I am swallowing hard as a write this, glad she is now free of pain and distress and with a hardened resolve to do all I can to breakthrough breast cancer.

Thursday, 29 December 2011

Auld Lang Syne me dear

I would say laughter has been the thing that has characterised this week for me.. How therapeutic that has been. A heady mix of time with my wonderful children, my wider family and good friends too. Throw in a great Firebugs gig ,several very competitive board games and time to chew the fat..creating new memories as well as revisiting some precious ones too ,it's been wonderful. As a result you find a much brighter Audrey writing this piece. I know the quiet house to follow will be hard but there is also the anticipation of more good times to plan in the year ahead to fill the gap. Of course my decision to have further surgery this year will have to be factored in so some plans need to be on hold till I know what will happen and when to proceed with it. I see the plastic surgeon next month and I recognise I now need to get on with it...whatever it is!

Time off has taken me to a more reflective space which has been helpful ( while peeling sprouts you understand!). It's given me time to recognise a couple of important things for me around the writing of this blog. Firstly I have a ways recognised that I am someone who likes to talk things out and through but not with everyone. And it's that withholding that can  take huge energy to contain. So my commitment to authenticity in my blog has meant that I haven't held on to as much. I haven't protected people I love from the truth as would normally be my drive ( I know many of you will recognise that one)  And strangely they have coped with that......as have I. Recently I have been more honest about feeling low too and I have tried not to hold this with any sense of failure but see it as a natural and normal part of my recovery and experience. Again saying that out loud has shifted the burden a little and I am not saying I am top of the world now -these journeys are never that straight forward-but something has lifted. I understand for many women ( and men) who like me have strong drivers to care for others, admitting the need for support and understanding will feel foreign. I know of women who have hidden their breast cancer from their families and paid a high price to keep life normal for them.  There is also a part of me wonders that one of the reasons to not spmakes out it is to make it seem less real. Denial can be a helpful mechanism at times i have found but its not usually sustainable in the longer term without a cost. So maybe blogging will help others like me, helping to lay down burdens in safe place and find a route to out the other side?

One thing I worried about when I started my blog was would it then define me. I didn't ( and don't) want to only be known for having had breast cancer impact on me twice. I guess what I have recognised recently what defines me through my blog is how I am responding to this experience, not the experience itself. And also the significance of that in professional life. I feel strongly connected to our mission with in Breakthrough Breast Cancer and the wider health campaigning work I am involved in and perhaps my recent experience has further strengthened my connection to promoting person centred health care in a valuable way. I look forward to utilising opportunities  like the Breakthrough Breast Cancer Service  Pledge to allow me influence this more in the year ahead.I do also know I love writing and hope 2012 provides me with more opportunities to write more.

Reasons to be cheerful. Precious time with the people I love has to be top of the charts in this blog of course. And Molly and Koshka have met and no fur was lost.....I am not saying they are friends yet but so far so good.The board game fun did result in a minor injury ( don't ask!)and the next charade was met with the plea to disclose any previous injuries.....don't touch her boobs was called out....indeed!
So also as positive end of year reflection I faced one of my demons this year, in that the cancer returned-thankfully in a very treatable form-and I have coped.Wondering what 2012 will hold now.....wishing you a very happy new year and as our national bard would say
For auld lang syne me dear
For auld lang syne
We'll tak a cup o' kindness yet
For auld lang syne

See you next year.
Audrey x

Thursday, 22 December 2011

Santa Clause is coming to town...but do I have enough food in?

I have been making a list, checking twice, three times and adding stuff to it constantly. I have fretted about whether it's enough, I have forgotten essential ingredients and not sourced others ( today it is silky tofu....)and completely exhausted myself at the shops. Yes you are right my Christmas break has started! Just one more sleep till my daughter arrives and to the FiREBUGS (my sons band) Christmas concert too. 
I am like so many of us, I find the task of writing cards overwhelming and plan to write witty inserts but generally fail to do it. But I do love getting them. And all the little catch up notes inside are really welcome. One of my friends of many years has just started to work as a breast care nurse and I know she will have great empathy. Her mother has had breast cancer and her sister died far to young in life too after a late diagnosis. What an impact on her family....she will have much to offer.
I also heard that the daughter of my friend who died ten years ago now has had her first baby and the baby has her name as her middle name. I have felt so uplifted by that, so good to know she will continue in this way. If she has her grandmothers genes she will be full of a creative zest for life and interest  in others. But I hope she hasn't inherited any genetic predisposition to  breast cancer of course .It's such a recurrent fear for me that I may have passed on a tendency to breast cancer to my daughter. Our work in Breakthrough Breast Cancer is vital to enable us to break this cycle for all families. It seems strange that news on Christmas cards is one of my reminders this week. A reminder too of how common this condition is and how widespread the impact I guess. Our family history guidelines are such a valuable source of information for families who worry as I do. In many situations they will reassure and for others they will give valuable information to act on. Do have a look a them on line at www.breakthrough.org.uk
Prior to finishing work I know I was feeling pretty flat. A combination of tiredness and that six months the realisation that it all really happened. There is a sense of unreality that carries you through for a while and once that passes the realities must be faced. And my reality could be so much worse so really I am so grateful for that. But I am a little fragile at times. Show me a sad film and get the waterproofs out. I even ended up bubbling at Antiques Roadshow....and I scoffed too when others admitted to this! The military wives choir has me in bits....seeing these women who live in the shadows so much finding their voice in this way is inspiring. I too have experienced the power of singing to uplift the spirit. We attended a Christmas concert in one of Edinburgh's cathedrals. A stunning but freezing setting. One of my favourites is In the Bleak midwinter...what can I say, it's the Scottish genes I think! But singing helps lift me, as does exercise and time with those I love so this next week I will hope to do all three:-) 
Also my daughter is arriving with Molly her newly adopted rotund Jack Russell. Not sure what Koshka will say to that! The good news for Molly is she is coming not only to dog lovers for Christmas but meat eaters too! The great thing about dogs is the unconditional love they offer....so lovely if you are feeling the need for it.
So if you too are feeling a bit like me, seek out the people and places and activities that lift you and be a wee bit selfish when you need to.
Reasons to be cheerful. It's my first Christmas for a few years when I will have my children home together so I am looking forward to that so much. My Mum will be with us and more family arrive on Boxing day so it will be lovely to see them all. Also I have touched base with  family and good friends who have given me love and support this year. That has meant so much. So I want to thank all of you who have travelled alongside me this year....and to wish all of you a wonderful festive season. You'd better watch out, you'd better not cry, you'd better not pout........

Tuesday, 13 December 2011

Its beginning to look a lot like Christmas.......gulp!

As I sit on a train heading south for the second time this month I am thinking of the pre Christmas madness that affects us. Or is that just me? I am determined to enjoy my festive season but need to survive to the end of the week first. And its feeling like a significant challenge right now.

Several years ago I needed a fairly urgent operation on an ovarian cyst which they thought could perhaps be malignant. It wasn't I am glad to say but factoring that in in the run up to Christmas was no fun. As I was awaiting theatre I was dozing off on the trolley. The nurse said to me , a little puzzled, have you had your pre med already? No no its just the first time I have  been able to stop in weeks and I am making the most of it! Sad but true you see. A working mothers Christmas story....

I found out later that having been on tamoxifen I was at higher risk of ovarian cysts. This week some research in the US has shown how many women stop treatment like tamoxifen. As someone who was on it for 5 years I do understand the dilemma. Drug information tends to focus on potential side effects without any balancing information about the benefits in terms of survival outcomes . Also for some of us we may not wish to be demanding and not ask for help with side effects like tiredness, hot flushes etc.
We do need to understand this better so women get the support, advice and information they need to make the right decisions for them. And if you are struggling, do speak to your doctor or nurse, they will be able to help.

My memories of working in general practice on the run up to Christmas are poignant. I used to find it so hard to feel free to enjoy my family time when I knew others were having a tough or lonely time. In the run up to Christmas so many people would find a reason to visit but you knew it was also to share their heavy hearts with someone who would listen. For those who had had many different challenges like a redundancy to deal with, bereavement, illness , money or housing problems these are always difficult times to get through. And recently I read the most reported long term condition many people face is loneliness. Perhaps the worst condition of all at this time of year when we think everyone one else is having a ball without us.


And one Christmas eve I sat in a breast clinic waiting for results, knowing that there would be some families getting news they didn't want and facing a very uncertain future. So think of those who have that to face this Christmas and also those caring for them too, be they family or the healthcare  professionals. But also it is really important that we all enjoy and value time with those we love, as well as try to remember to extend a hand to those who might need it.

Reasons to be cheerful
I am on the countdown to holidays and our daughter coming for Christmas. Also looking forward to Christmas party time with colleagues. The one this week finishes at 3 am..........my own lights go off around 11 so it's not looking hopeful! The tree is up and Koshka is taking it in his stride and I got a gift of Michael Buble Christmas album. It's beginning to look a lot like Christmas....



Tuesday, 6 December 2011

Feisty and fabulous? Really?


Last week I was mainly in Edinburgh and I was all the better for it. It’s meant I was in my own bed every night! I also spent more time in the office with the team and I managed to catch up with colleagues more widely in my network. All good. The other thing is I have found several excuses to visit the Christmas market…I told you I like cheese. I have also fitted in a zumba class and  walked to work several days this week. By yesterday I crashed but it had been good till then. I do need to shut of my overdo things button! Any suggestions welcome…
One highlight of the week was a session on happiness at work and how often the value and importance of that can be missed and neglected. The four key qualities described are trust, positive relationships, progress and meaning for happiness to thrive at work. Good learning and reminders and food for thought really. And working in a great organisation like Breakthrough offers such opportunities to see progress and gives our working lives real meaning too. It also made me reflect how important work colleagues and environments are. Often when people are ill and long-term sickness ensues, how much they can become isolated, in particular from work colleagues who were previously such a big part of their lives. It’s a kind of double whammy .
So do think of colleagues when these times hit and check with how you can help them not lose the contact they are keen to have….small gestures can lift a day. A diagnosis of breast cancer can be so isolating and scary and so often brings with it depression which in its turn isolates further. I read this week of the power of blogging to help with depression too. Perhaps its a safe place to put unwanted thoughts and stop them going around in your head. What is most important that the person is able to talk to someone about how they feel and to be taken seriously. I remember feeling quite guilty that I didn’t feel on cloud nine at the end of treatment. After all I had survived hadn’t I?
I notice that I am in an almost conflicted place with regard to my own recent experience too. There's a large part of me feels lucky that I have not needed extensive treatment or had to have lengthy times off work. I have retained all my hair, haven't gained or lost weight as a result of treatment, I had excellent care from a team who cared about me as a person and I haven't lost income. So lucky me! And I honestly do see that because I see so many around me in my work whose story is very different. I feel that difference acutely and it spurs me on in my role. Our vision in Breakthrough Breast Cancer is a future free from the fear of breast cancer. And I guess if everyone's experience was like mine it could feel like we are almost there.
But has it been free of fear and impact?...not really if I'm honest. As the end of the year approaches it's a time to look back and that has made me look at it all through fresh eyes. This all started again for me in early April following a holiday we had enjoyed with the family. We returned full of optimism and about to extend our house for a new phase in our lives. And by the end of that week much of the focus changed. What was to be a routine follow up became a fresh journey of biopsies, uncertainties, fears and sleepless nights. What I don't know is the impact too on my family-I can guess at some and you can too but it has had an impact that much I do know. On friends too who have supported me. And my colleagues who have had the full reality of living through this dropped on their unsuspecting laps. So a bit of me feels pretty angry with that if I am honest. This year was supposed to be quite different. A celebration of big birthdays and new horizons and instead it's been a bit of a marathon overall. And not just for me but for all those whose I am close to. So sorry guys I know it's not over yet as I plan the enforced "boob job" next year. I may be in a bit of an angry elf place just now but once it's all over the celebrations will be planned. Promise.
Reasons to be cheerful
I have had some lovely compliments paid to me this last week about how much I have achieved within my role in Breakthrough and that has been so affirming and reassuring too. I was even described as feisty and fabulous! We also had a lovely visit to our family and enjoyed precious time together. Including a cinema trip to see Arthur’s Christmas.....really feeling quite festive now. It was hard to come away as always though and wish we lived nearer. Christmas as ever reminds me of what is important to me….and as Bryony the Elf would say, there always time to put a bow on it!




Tuesday, 29 November 2011

Audrey Birt's breast cancer blog: Time to think and surviving?

Audrey Birt's breast cancer blog: Time to think and surviving?: Although I missed the opening of the Christmas Market in Edinburgh I have managed to get along to it. The smell of cinnamon, mulled wine ...

Sunday, 27 November 2011

Time to think and surviving?


Although I missed the opening of the Christmas Market in Edinburgh I have managed to get along to it. The smell of cinnamon, mulled wine and pretzels is wonderfully evocative of Christmas already. I do cheese I admit (and not just the kind that goes in with the potatoes at the stalls). The kind of cheese that gets Christmas baubles for the new family members engraved with their names and in considering buying the Michael Buble Christmas album. I know, but if it lifts the dark days of mid winter and makes someone happy (and me!) why not?

And this year I would recognise all my emotions are close to the surface. My grumpy fuse is shorter than usual I confess, my vulnerability makes me over sensitive to hurting feelings at times too and of course tears aren’t too far from the surface on occasion. Like many of you I’m sure, its not the big occasions that evoke tears often, it’s the simple things that touch me. Kind words and gestures and well-timed hugs are the best. But not ever the Antiques Roadshow (;-)) or that John Lewis advert. And when Russell and Flavia left Strictly last week that was an eyelash in my eye that’s all!!

Sometimes the things that upset me most don’t just move me to tears alone, its anger too amongst the upset. On more than one occasion this week I have seen the impact of secondary breast cancer and it’s made me think about how our job is a long way from done. And that survival statistics are truly encouraging but also hide a huge amount of unmet need and suffering in its truest sense.

I remember my Dad’s palliative care specialist doctor speaking to me when I met her at his bedside as he was dying. She was a very kind and skilled professional. She took time to talk to me when she heard I had just finished cancer treatment myself. I expressed my grief at losing my father, especially at this time and also how his dying was making me doubt my own survival. She expressed her surprise and pointed out that my Dad had survived for six years after his diagnosis after all. A success of five-year survival you see? From my perspective I was 38 with the previous expectation of living to a ripe old age but certainly long enough to see my children grow up. I don’t remember my reply-I’m not sure I found one. And several years later when a good friend died of breast cancer 11 years after her diagnosis I reflected she too would have been a survival for ten years success story. But her own children were still at school when we lost her. Success? I don’t think so.

I know the question has been raised about how we collect the data to at least ensure we understand the prevalence of secondary breast cancer and indeed all other cancers too? No answer has emerged yet. But is this really one of the “Wicked” questions that defy our current thinking? I am reminded of the quote below
“If I had an hour to solve a problem and my life depended on the solution, I would spend the first 55 minutes determining the proper question to ask, for once I know the proper question, I could solve the problem in less than 5 minutes.”
- Albert Einstein
The thing is for people with secondary cancer their lives are dependent on this but at the moment the reality is fractured care pathways, poor support and we don’t know how many people are in this situation. My sense is at present we are not trying hard enough to determine the right question or to answer it. And until then the real level of need will not be known nor met. Frankly they all deserve much better than this and all of us working in this field need to ensure we keep asking the right questions of the right people. And demanding the answers too.

Yesterday I attended the first day taster session of an action learning set. It was such a valuable time, creating for me some time and space to think about my work and purpose. An article used to stimulate discussion described the tyranny of multi-tasking. As the consummate multi tasker, especially now I use social media more and more for work I recognise how full my head is often. And in recent months my body’s way of telling me to stop is to bring on a migraine. Travel has often been the culprit; I suspect the final straw for my overtaxed body. It strikes me that my blog is an opportunity to reflect and step out of the normal rushing to check in with myself. I recommend if not this, then something similar to help along the way with your own challenges, whatever they are. You can also get a perspective over time too. Whenever we are in the midst of something, its easy not to recognise change for the better or indeed worse. As I said before-blog therapy-you don’t even have to put it on the internet! But it may help others too if you do.

Reasons to be cheerful:
It’s a slightly calmer week ahead and at the end of it we are going to see my stepdaughter and her two lovely girls. I love the trip before Christmas- its always really resonant of the season and a really special time with them all that we treasure. One year it overlapped with the final of X factor. So we were lined up watching the show, cheering on our favourite. The finalist song started and the girls call out that’s the song from Shrek! I am still recovering… yes you guessed it, it was Hallelujah by Leonard Cohen (my hero you may recall…). Simon Cowell you have much to be forgiven for. Not least for having to explain (or trying to duck it) some of the lyrics to those far too young to be interpreting such things! Fingers crossed for this year….

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Friday, 18 November 2011

Phew!


From London to Dundee via Edinburgh (or Embra as they say in Glasgow), I am sure there could be a song in that. It’s been a week of train journeys really. I even managed a pre Christmas get together with colleagues that may be a record in its previous-ness to the season. But enjoyable all the more for it. The aforementioned Movenmber's are making meetings a bit challenging….that is to keep your face straight! I love the way it has changed some of my colleagues into either dodgy seventies cops or dastardly hero types! Next weeks board meeting should have a whole new dynamic too. The trip allowed me to catch up with colleagues and good friends too-I realise how much I have missed that of late.

In the week that Breakthrough Breast Cancer has published new risk factor guidelines (see our website www.breakthrough.org.uk to download them from the publications section) I have also attended two meetings where the potential of reducing risk and improving outcomes post-treatment through a healthy diet and physical activity. It’s made me value even more the importance of my zumba and that general feeling of being on top of my health-rather than underneath it as it’s felt for six long months. The evidence is stacking up in support of the benefit of being a healthy weight and being active and it does seem that we should be looking at making the support for this a part of treatment- not just a nice to do for the lucky few. After all a drug that had those benefits would be being sold for millions, would it not?

Some conversations have also recalled that well known phenomena after a cancer diagnosis(and other difficult times too) of the  "I would have been in touch  but….”syndrome. Do you recognise the feeling? I suspect some of you do and I suspect like me it has really hurt sometimes. And it’s the people you expect to come forward who do the opposite that are the ones who can hurt you the most. But I have learned that for those who don’t there is a complimentary number of those who do come forward with their love and support. And it’s so much easier to focus on those who do and just let go of the hurt caused by those who don’t. Oh and learn from it too. So for those of you who stepped forward and still do. Thank you so much-it really matters.

And its been the clinic this week too and good news, the first mammogram following surgery is clear. Woo hoo! And it wasn’t too painful (ish). The waiting of course was fairly painful in a different way but I got the result the same day and that saved my sanity. With that in the bag my decision is made-I will have corrective surgery as soon as I have seen the plastic surgeon and know what’s best to do. One option could include lipofill-taking fat from an area you don’t want it and putting it where you do. Painful I hear but otherwise some obvious benefits don’t you think?! I sensibly did not go back to the office after the appointment (my head was mince to use a technical term). I realised last week after feeling like crying standing in John Lewis what I wanted to do and now my results mean that the time is right.Watch this space.

Reasons to be cheerful: A good time with friends was enjoyed this week and also anticipated as my good friend is coming for the weekend. I can’t wait. Now that my visit to the clinic is passed I feel I can enjoy it too. Also I know now my daughter will be home for Christmas-weather permitting (last year it didn’t!). Her dog Molly is coming too. Koshka and Molly have not yet met. Oh oh….sorry puss. And talking of Christmas the lights go on in Edinburgh soon and the Christmas market starts. I love it and there can be few prettier settings in the world for it. Do visit!




Saturday, 12 November 2011

New bras and zumba!


I survived the first week back from holidays and it was a week of a whole range of experiences. One highlight was the Scottish Health Awards. Its always a really moving occasion when mostly it’s the unseen and unsung heroes who are nominated by grateful patients. The hankies are at the ready by all there, as each award is received much emotion. Whether it’s the neonatal team doing skilled and life saving work, the fab general practice team or the radiographer from the western isles and who has been on call for 11 years (apart from holidays) you see the evidence that great people serve us well around the country. The gratitude and modesty exhibited at these rewards reminds me how rarely we thank people in our culture. It’s important we remember that we learn as much from feedback on what we do well as well us understanding where we go wrong. The Breakthrough Breast Cancer Service Pledge does that powerfully. The feedback not only helps teams identify improvement goals but also offers the opportunity to learn about what the patients have really valued.

This week has witnessed the emergent Bristles of Breakthrough -the males in Breakthrough, including our Chris our CEO (yes there are a several brave men who do sterling work in the very female environment of Breakthrough!) joining to support the Prostate Cancer Charity and growing moustaches to raise money and awareness for prostate cancer. It’s really great to see this generosity of spirit within the organisation. These are challenging times but it’s important we don’t lose the collective good will that needs to be the lifeblood of charities. Equally Bowel Cancer UK has launched an important campaign this week highlighting that women too can get bowel cancer (but under estimate their risk). As charities our health messages often are linked (eg health improvement, early detection) so we should support our common and unique messages whenever we can. After all getting breast cancer doesn’t stop you being at risk of other cancers or heart disease or diabetes. Indeed the risk factors will often be shared. So well done bristles of Breakthrough, my Dad died of prostate cancer and today is his anniversary so be sure I will be sponsoring you. And also well done Bowel Cancer UK for your important work.

That said I feel a sense of relief that I finally plucked up courage and did the other cancer screening (bowel and cervical-sorry if you are eating!) and all have come back negative. Phew, I think I can only do one thing at a time. It’s a busy week ahead with over night stays in London and Dundee (now stop it!). As ever my life’s ironies don’t fail to impress. I was due to be at the Breast Cancer Audit meeting on Friday but instead I have my return clinic visit and my first mammogram since the surgery. Gulp. So I finally plucked up courage today and got new bra’s. Tempting fate aside, it was a fragile Audrey that asked for help in John Lewis and bless those wonderful people who helped me out with real sensitivity and kindness. No holding me back now I hope.

Reasons to be cheerful: Seeing colleagues and friends of course. And also I have discovered zumba! The joy of dance and music. My daughter has often said she wants to become a celebrity so she can go on strictly come dancing. I do know what she means but I think zumba is the closest to it I will get. Frankly I couldn’t manage the heels but you know just once in my life I would love to look like Flavia in a jumpsuit!
So twice a week in a vain attempt to achieve that I emerge from the class smiling, hot, sweaty and completely zumbered! I recommend it.

Wednesday, 2 November 2011

I'm Fine, i'm fine!

I seem to have spent the last week telling people I am fine. Maybe some of the assertions of fine-ness have become more shrill at times if I’m honest. I have gone from Mrs Angry of Edinburgh to shaking with anxiety -each of them unexpected.
The anger was related to an issue which is now resolved but I felt furious at the time. But more than that it awakened my vulnerability that was unexpected. I recognised each made the other worse and so got support from a colleague to resolve it. It was good to recognise that and also to get the support. All good learning for the future and probably untypical as my fierce independence can unnecessarily make my life harder at times.

At a dinner I attended I received some moving comments about how impressed they were with how I am dealing with my situation and how passionate that makes me about the cause. I have become fairly used to talking openly and can forget the impact on others of my recent diagnosis of breast cancer. I did deliberate about mentioning my personal circumstance in my talk so decided to go with how I felt in the moment. And it felt ok so I did. Of course I don’t want, indeed abhor the thought of, sympathy and so it’s a delicate balance-an exhausting one too at times.

One of the young scientists from the Breakthrough Breast Cancer Research Unit spoke at the dinner of why working with Breakthrough is different. On day one he was taken to the operating theatre and saw the whole process from the person to the laboratory. In that moment he learned the impact of his work and the focus on finding the breakthroughs to achieve our mission of a future free from the fear of breast cancer. It was an amazingly powerful illustration about what makes our work special and impactful.

Towards the end of the dinner we took the opportunity to thank Professor Dixon who has supported so much of our activities this month with a photomontage of people-mostly former patients he has met during the month. He was moved and delighted and told me of his previous favourite present of all. They were Lion King socks from an 18 year old girl who died aged 21 of breast cancer. He said it was many years before he could part with them. It’s a hard job a breast surgeon and their team has-is it not?

The next day I visited the research unit to join them at a Go Pink coffee morning. A unique aspect of our work is its proximity to the treatment service so the unit sits above the clinic, ward and theatre. I realised that most recently I have been there as a patient and my stomach flipped and I felt my self shaking- an understandable reaction to a stressful memory. It’s interesting what our bodies reveal to us as we tell people we are fine! My personal and professional lives were clashing loudly but spending time with the researchers is always inspiring and rewarding so on balance I am glad I went. But I am also glad now to have a week off recovering from a very busy and very pink October.

As one of my colleagues donned a pink Morph suit to join with the local bus company in going pink for us I remarked, “ what have we come to you wearing a pink morph suit and me talking about my boobs all the time”! His rejoinder was it would be worse the other way round. When I stopped laughing I had to agree! Thank goodness for laughter and a great team of people willing to go so many extra miles.

So next time someone you care about keeps telling you they are fine its worth taking into account that maybe that’s not the whole story. But choose your moment wisely to probe further… you have been warned!

Reasons to be cheerful:
A week to relax and do so many things I haven’t quite managed to get around to….oh and sleep too. We have also had some visits from family and friends that have been great. My latest hot tip is go to see “Midnight in Paris”-its wonderful. A trip to a concert in a castle in Perthshire is planned tomorrow. I hope the weather holds, as Perthshire in the autumn is really beautiful.

Tuesday, 25 October 2011

A tale of pink smarties and why age shouldnt matter

A large part of the last week was at a party conference. My role there is to engage the politicians with our campaigns, to debate key policies and issues and make contact with the whole range of the delegates to let them know about our work. These conferences are busy, full on experiences with tempting people to the stand (pink smarties helped I am ashamed to say!) debates, fringe meetings and coffee conversations throughout the day. My throat was sore from talking and as for my feet!
I knew I had to have early nights to help me survive-boring but true.

One particular woman I spoke to not long after I arrived made an impact. She was one of the many we spoke to who had had personal experience of breast cancer. I began to recognise the signs as each would smile and seem to engage a little more than normal, followed then by a shy admission usually of having had personal experience. I found each disclosure touchingly honest and brave.

This particular lady told of her treatment seven years ago and her recent discharge from follow up. She was well and active and knowledgeable about her history. We were able to explain the process at her request how she could still ask for mammograms although she was past the screening age for automatic recall. She was 75 and very engaged with the need to continue to look after herself and the importance of early detection. Impressive indeed and perhaps not so rare anymore; not only are we having our assumptions about a cancer diagnosis challenged by the improving outcomes for people but we also have to review our perspective of age.

I attended a lunch meeting yesterday looking at the issue of how we perceive older people in our society. There was a shared view that change of attitudes was needed. I meet so many impressive women (and men) in my role and many of them in an older age group who contribute so much, be it in their communities, health care settings, families and so on. But the fact remains that there is evidence that different decisions are at times made on referral for treatment, treatment itself and perhaps on follow up too on the basis of age.

We have to challenge seeing people as defined by their age. True person centred care is seeing each of us as individuals. I well remember the woman I met first time around who was waiting to hear if she had cancer or not. She was 40 years older than me at that time but what struck me is that we had all the same fears and anxieties; fear of the treatment, of disfigurement, of the unknown and most of all not being there for our families. Food indeed for thought. Another visit I made this week was to the National Gallery of Scotland to see the Elizabeth Blackadder exhibition. It wasn’t just her beautiful paintings that were compelling(my favourites being of flowers and cats!) but her own charisma and beauty as evident from the short films. She is over 80 now and all the more impressive because of it.

Reasons to be cheerful:
We had a great time with the birthday boy! There is nothing like singing to lift the spirits and especially with people you love. Also it was good to see so many “kent” faces at the conference from so many sectors and receive so many kind messages too. A Sunday paper carried a story of my blog that has triggered several emails and comments from people who know me. Some of them weren’t too cheeky! I would just like life to be back to normal now and its getting there-just not quick enough for me. I keep saying I was a former patient of the hospital in Edinburgh-I wish!

Wednesday, 19 October 2011

A game of two halves-and a brthday too!

It was a game of two halves this week. Mojo was peeking out the clouds and busy week ahead but some real moments of celebration to look forward to. And it really did start well with successful meetings and in particular a reception hosted by the Lord and Lady Provost of Edinburgh to recognise breast cancer awareness month and the work of the breast service and research unit at the Western General Hospital in Edinburgh. The TV cameras were tempted along with the knowledge that both the Lady Provost and I have been patients of the unit too. It was such a moving evening and a great opportunity to value those who have really made a difference for so many.

As always it was about the people. And everyone had a story of involvement-some of them really sad and some a celebration of life too. As again Mike Dixon was key contributor I was able to say he had seen a lot of me this year (in all senses of the word). It raised a laugh and helped me acknowledge the reality without being too heavy. A delicate balance and as the week went on I realised that there was a price to pay.

I returned from work on Wednesday after hearing some really sad and challenging stories of people’s experiences and impacts of breast cancer. I was exhausted and knew I would have to rest the next day or not survive the week at work. On Thursday as I read about a 28 year old woman struggling with treatment for breast cancer I realised I felt overwhelmed. Seeing a young person robbed of their well-being and potentially their future is so wrong… I think that emotional impact as well as physical tiredness was having an effect. A walk in the sunshine helped and as I walked I reflected that all along I have said the fact I worked for a breast cancer charity helped as I could turn a negative experience into helping others etc etc. But last week was the point I acknowledged that sometimes it’s really hard to be so close to your own demons whatever they are.

And I know my team have felt the sadness I have for those we work with and care about-its not an easy job even without my experience. But it is a job that makes a difference and how fortunate are we to have that experience. So I am not complaining but I understood that my weekend away was so important.

I was visiting family and in particular the new baby in the family. I just loved having time with him and that reminder of new life and the joy it is to share it. Therapy indeed. So I was thinking what would be on the bucket list in relation to that?  
Reasons to be cheerful: having the day off today to enjoy time with the family to celebrate my son’s birthday. Woo hoo! Nice treats planned and also a bit of karaoke thrown in. His entire band will be there so I doubt I will have much opportunity to do a solo…. but I am a very willing backing singer. One thing I know now is how important it is to celebrate and birthdays are special days to treasure. Make sure you treasure yours too.

Monday, 10 October 2011

Evoking the spirit of Braveheart?

Well I have survived the first part of October at least! Breakthrough Breast cancer’s first TLC day was covered extensively in the media and manning the stand in a shopping centre was as ever a fun and at times touching experience. The fine folk of Glasgow-always up for a blether- regaled us with their stories and impressed us with their resilience in the face of diagnosis of breast cancer. As always these experiences reinforce how common breast cancer is and how many lives it touches every single day.

The Changing Breast Cancer Event was an outstanding day. It was organised by our small team in Scotland and they did an amazing job. All the input was interesting and challenging. Three women spoke of their own experiences and what they have learned from that. I was to speak after the first of these tales. And as she spoke of how since she had agreed to talk earlier in the year, she has now-ten years on- developed secondary breast cancer, the room stilled and the emotion became palpable. For the health professionals I guess they rarely hear such a personal, unabridged, description of how it feels. And for the women and their families affected by breast cancer it was attentiveness born out of empathy and fear. As I stood up to speak I had a huge lump in my throat. Her understated story, in the face of obvious illness, told with the aim of improving things for others, was unsentimental and all the more powerful for it. As a start to the day it was such a reminder that there is so much more to do to change breast cancer.

Following my talk was an excellent summary of what we know so far about how to prevent breast cancer. The Breakthrough Generations Study is a forward-looking study in to the causes but we already know some risk factors that we can modify. These are not widely known so as the Professor spoke of how weight reduction, keeping active and reducing alcohol could help to prevent primary and secondary cancer the mood in the room became restive. Channeling the spirit of Braveheart you could almost hear the “ You can take our pies but you will never take our Pinot Grigio!” Since then I have resolved to get more active, lose some weight and I treat any glass of wine with grave suspicion. Another highlight of the day was a talk by Professor Dixon (yes my surgeon as you know!) who said that for a ridiculously small nation we are able to deliver a superb service and free at the time of need. It won him enthusiastic applause. Further channeling of Braveheart and by a Yorkshire man no less.

Reasons to be cheerful: Well as you can hear a very moving but motivating day supported by so many special people wanting to change breast cancer for the better. With our joint efforts I really have hope we will continue to improve things for people. I also had time with good friends and watched the Firebugs at a new venue in Glasgow. I really loved it and have felt some signs of awakenings of the mojo. Phew! No more additions this week for the Bucket list but a big one for the F*** list. Weather forecasts that include the phrase “ it will be lovely today everywhere but Scotland and Ireland…”. I am sure there is the technical know how to edit that bit out in Scotland and Ireland. It just upsets us! I speak from the heart here. Get working on it please?

Monday, 3 October 2011

In the Pink?

Well its started Breast Cancer Awareness Month is here! I am taking a big breath before I dive in. It’s a really busy time and all-important month, not just for raising awareness but much needed funds too. This week has key events such as our TLC day and our Changing Breast Cancer conference in Edinburgh. The team have done a huge amount of work to get to this stage so I am up to my ears in reading briefing documents, working out where I need to be and when, AND dealing with the what will I wear dilemma. And the all important question do I really need to wear pink?!

What I hear you call? Now TLC day is a no brainer (!), the pink jacket will be donned with pride. But with Changing Breast Cancer I am contemplating bucking the trend and wearing some other colour. This whole dilemma in a way is significant as it resonates with the range of reactions to the pink dominance of breast cancer, which started 20 years ago now with the first pink ribbon. I know for some people, not just the men who are diagnosed with breast cancer, but also some women the pinkness of the image can jar at times with their own experience and feelings. I do recognise some of that conflict within myself.
Of course I have embraced the whole pink theme with great enjoyment and still do; I have bought a range of pink items in October from t-shirts to car accessories, I have walked down the Royal Mile in Edinburgh dressed in a pink bra as the pubs were coming out (no not just my usual Saturday night but the Moonwalk in our fair city-believe me it takes courage and not just because of the Scottish weather), I have Gone Pink with the team and applauded them in pink morph suits and the like.

But I admit that it has at times felt at odds with the serious impact the condition has had not only on me but on the many I meet through work and my friends and family too. I have had to stop myself from becoming the woman in black (well its slimming too!) when that maybe reflected better how I felt but not really the image I wanted to project.It reflects too the anger and concern I feel at seeing so many lives impacted on by breast cancer. Its also in part those emotions too I recognise that give me the drive and energy to change things for the better. So for the Breakthrough Breast Cancer Changing Breast Cancer event I think I wont be wearing pink just this once…but not black either. I am sure I will find some old thing in wardrobe!

And lets recognise that  pink is such a positive colour-and there is much to be positive about now compared to the past experiences of and survival after breast cancer. So the pink ribbon is also  that symbol of hope and celebration of life that is so valuable. So many people will be going pink this October-having parties, baking pink cakes, running, walking, Zumba-ing, shopping and so much more. All of those people, be they friends together, offices, schools, businesses, will be raising those pink pounds to fund our crucial work.And whats great is they are having fun too. Many of them taking this opportunity to turn around the bad experience into something positive. We quite literally cannot do it without the army of people who through their efforts will be saving lives and changing futures. And the Breakthrough Breast Cancer pink is “hot pink” which is fantastic. My rather fabulous hot pink sandals will definitely get an airing month.And I plan to have fun wearing them.

So do wear your pink with pride this October-as I will-and remember TLC. Promote our TLC breast awareness message to your friends and family- and get them to pass it on. On behalf of the more than 4,000 women in Scotland alone who will be diagnosed, for all those who are surviving the diagnosis but still live with the impact and the 1,000 women every year in Scotland who lose their lives to breast cancer-please do what you can to support our life saving work. We are ambitious for change but we can’t do it without you.

Reasons to be cheerful: I feel rested and restored following a visit to my daughter and meeting the lovely Molly; her newly adopted rescue dog from the Dog Trust. She is a lucky dog having found a home where she gets loved and cared for like no other. And like so many rescue dogs like her, she knows a good thing when she finds it and so returns the love in spades.
I also have an addition to the bucket list – a trip to the west of Ireland. And for the F**k it list it would be the cold sores I keep getting!
So a deep breath and diving into October –if you see me I will be the one in pink-mostly.

Sunday, 25 September 2011

Now what's the oppoosite of a Bucket list?

I started this week in London, meeting up with my colleagues across the organisation. All good. It was an inspiring few days confirming our plans for the coming months and spending time with people who share my own values and ambition for our mission at Breakthrough Breast Cancer. I travelled there and back by train to ease the burden of travel but still found that I started the next day with a migraine-my bodies way of saying slow down. Although I have been used to pushing myself I keep being reminded that I really cant do that just now. I recognised myself in the statement by a friend in a similar situation that she didn’t want to slow down she just wanted to have her energy back to do the things she used to. If only it were that simple and there is of course an inherent catch 22 because the more you try the less you can do…….I call it my goldfish moment I just need to keep learning it.Well no one's perfect eh?

I spent this afternoon doing a little shopping,ending up looking at pretty lingerie again and leaving, as before, without any. I feel caught between wanting something to help me feel good, not wanting to buy anything that wont be suitable if/when I have more surgery and most importantly knowing that my asymmetry makes it all a bit complicated. I could get some help with a more permanent prosthesis (and I know they are fine and many are helped by them) but somehow I don’t want that. It feels like making the decision before I am able to. The temporary one I bequeathed to the cat and even he wasn’t impressed.

It leads me to reflections on how this experience has so many different impacts. Breast cancer itself has many different stages and each person has their own particular reaction to it. Traditionally we have spoken of primary breast cancer and secondary breast cancer. Both represent different stages of the disease, needing different care and treatment. But we know that for many when they are diagnosed with secondary disease they find the support lacking. This seems a real paradox given the very real need when cancer is found to have spread. I do wonder if we need to stop seeing it in terms of this division and instead see the complexity of the disease in its entirety and ensure we support people throughout their experience of cancer. We need to recognise that its a changing experience too, that  many live for many years with secondary cancer and their needs are complex and varied- we need a breast cancer service that is person centred and is consistent throughout their journey. One wonderful story I heard recently was of one of our supporters who was told over 12 years ago that she would not live long and she recently proved that wrong when she welcomed the birth of her first grandchild. How fantastic is that? Things are changing in a good way and we need to change our support from the NHS and voluntary sector, to meet future needs too.

Someone I follow on twitter was inviting people this week to share their Bucket lists and I was considering that when I saw another invitation to do your F**k it list too. One of hers was to stop losing things in her handbag….you get the drift? It made me laugh and think too, I must confess. So here goes some of the Bucket list:
Visit the Himalaya
Holiday with the family in Orkney
Have as much time I can with people I love
Get time to write a book at some stage
Go on safari
Go back to the May Isle when the seal pups are there
Visit more bird sanctuaries
Buy that dress ( see below!)
And lots more so …..
To be continued!

And if I may be permitted the start of a F**k it list.
Wanting never again to sit in meetings I feel nothing constructive is happening in.
To never again hear polarised political debate instead of a real open-minded commitment to improving the common good.
The Edinburgh Tram project (its chaos again!)
But most importantly it is to stop so many people being diagnosed with breast cancer and especially to stop people being diagnosed with advanced disease. There are endless F**k it’s about breast cancer. In a way this blog is about sharing some of mine (although perhaps in a slightly more lady like fashion ;-)). I suspect I may come back to this theme again…yes the F**k it list of breast cancer is also to be continued!

Reasons to be cheerful:
Yesterday I had my hair done (always a therapeutic intervention!). And then had lunch with my good friends. It was great to see them.Love an laughter-always a joy. I am also planning my trip to my daughters later this week. Fun and relaxation are on the menu I know!
AND I got the chance this week to see some of the products being sold for Breakthrough during breast cancer awareness month. Charity shopping is perfect-conscience free and lovely products too-my favourites are the coast dress, the warehouse top and of course the M&S pretty in pink t-shirts. Bucket list material I think. See www.breakthroughbreastcancer.org for more details. Enjoy!

Saturday, 17 September 2011

The milk of human kindness.

I have been watching the news the last few days about the miners who were killed in Wales. Any untimely death is a tragic one. For me, having grown up in a mining area with my father being in mine safety it was especially poignant. The scenes of that mine seemed to take us back in time. It remains such a dangerous way to make a living. The reason the Chilean rescue was so memorable was because it was rare to save so many lives in such an incident.

My father always said that he would prefer to see a time when people did not need to earn their living down mines. The impact of the miners strike was huge in our community and my father-like many- had no respect for Margaret Thatcher or Arthur Scargill, believing neither of them to have the real interest of the miners and their families in mind. Perhaps mines like the one in Wales are most likely to survive in times of economic hardship but safety must always be paramount. I lived through a local tragedy that although did not affect our family directly, I still recall vividly because of the stories and the impact on my Dad. He lost friends and colleagues and it affected him deeply for the rest of his life. And I remember our fear if he was late home-it was always there.  My thoughts are with the families for the difficult months and years ahead. The mining communities in South Wales will I am sure act as a support to those grieving families as such communities have done for centuries-their dignity has been remarked on by many.


It’s been a week of impacts. I attended the Long Term Conditions Alliance conference on Social care and long-term conditions. We know that when people become ill it affects all aspects of their lives. I heard loneliness described as a key issue. As we live longer and also have more one-person households loneliness becomes increasingly common. If that is combined with illness its not hard to see how it may compound the issue. As one elderly woman said to me-“I was told I had breast cancer then returned to the house and closed the door and there was no one there to comfort me.” She then went on to say that the support group had become a very important source of support and indeed the milk of human kindness.

Depression is a common consequence of a cancer diagnosis. And its frequently after treatment has ended that the impact of the diagnosis is felt most acutely. I shared my experience of hitting a wall of fatigue and “oh my goodness that really happened” first time round and to some extent more recently too, with a friend this week. She too has felt that impact and really was helped by a charity that provided counselling.

 Towards the end of the week I attended a meeting where we discussed what kind of communities we want to see and what will create that, given our current challenges. I do believe its fostering that milk of human kindness that provides the kind of support I have spoken of-both of which was made possible through a mixture of public and voluntary funding. Supporting our natural resources whether it’s as individuals, communities or nations can help us thrive better in the future. We need more policies and behaviours that support this.

In Breakthrough Breast Cancer we see the power of the volunteer daily, whether its doing the Great North Run to raise much need funds for us tomorrow (thank you all!), whether its our great volunteers who come into the office and do vital work on our behalf, whether its service pledge volunteers across Scotland using their experience to help others in the future- we could not do our work without them. And they inspire and humble us. I also see that spirit in many of our employees at Breakthrough who go beyond the extra mile for all those we represent. A job in a charity won’t make you rich ever but you will get up each day knowing you are making a difference. And they all are, all of those who contribute to the work paid or unpaid.

So its important to say thanks. We host events for volunteers to do that but this week it was one for team Breakthrough in Scotland. It also gave them an opportunity to see the new kitchen that has contributed to my grey hairs of late! I was busy cooking up a storm when a photographer arrived to take a photo of me for a article about my blog in a newspaper on Sunday this week. The dash to do the hair and make up and change out of the jeans and into a dress was impressive. I gave a swan like performance calm but paddling furiously while he took the photos. Koshka got in on the act too-sitting on his favourite cushion beside me. Amazingly it all came together on time despite the distraction. The photos seemed good too but I don’t know where he found those wrinkles to paint on ;-)!  It was a great evening and it also allowed my family to meet them all. There was much laughter and chat and my daughter summed it up at the end of the night, saying what lovely people I work with. Indeed they are!

Reasons to be cheerful are of course the great evening I have just described. I coped at work for a full week
( woo hoo!)and plan to travel to London to see my colleagues there next week. I am looking forward to that. Tomorrow its time with friends, chewing the fat and if weather permits a walk on the beach too, fingers crossed. 

Saturday, 10 September 2011

The best laid schemes......

I do believe I have quoted this line from a Burns poem before…but its apt again this week. The best-laid schemes o' mice an' men gang aft agley”. The fireworks started well-we had a prime spot with a marvellous view of the castle from the park just a short walk from the house, it was a mild night (for Edinburgh) the swans peaceful on the small pond below us. And the first half hour was magical and probably the rest was too we just missed it! I was especially enjoying the music from the Nutcracker section when I realised my husband was acting distractedly. His tendency is to play things down so I commenced the third degree and my questioning disclosed he had severe heartburn (his words), was feeling clammy, dizzy, had blurred vision and felt sick.

As you may recall I am a nurse by profession so I was checking his pulse and listing the signs of heart attack in my head (www.bhf.org for more info!)And also remembering that there is many a story about people thinking the pain of a heart attack was heartburn. As this was an organised event in the park thankfully the paramedics were quickly at hand when our son went off to look for them. As he insisted that really he was fine and could walk home in a minute, the female paramedic replied, “ I will be the judge of that”. He then conceded control realising he was dealing with a formidable force. However once she had mentioned several times that he didn’t look his age they became firm friends …… A night in the Royal Infirmary resulted in a happy ending I am much relieved to say. The reaction was to a painkiller his GP had prescribed for a rib injury and was indeed severe heartburn coupled with dropping his blood pressure and pulse. His resting pulse is normally low so the combination caused a suspicion of cardiac signs and again the doctor in the Infirmary saying his pulse was just low because he is fit, boosted his ego no end.

So all’s well that ends well…a quiet week to recover and stopping the tablets means he is well again. Phew. Although a reminder yet again-as if we need it-that life is precious. My planned visit to the GP consequently was after a night of no sleep and worry so when she said to me you need more time to rest and recover from all you have been through I gave in without a fight for once! Its been a quiet week all round but its helped.

I saw Mike at the breast clinic too and we agreed to do nothing further this year to allow me to get my strength back. I wanted to understand better the risk of the cancer returning. If this was a first diagnosis I would, with such early disease have 90% chance of no return in 5-10 years. I know I can live with that but what is uncertain for me is the complication of this being for the second time. There are no stats for this as my situation is still unusual. So no definite answers but a bit more information to help with my decision. If I can ever make it! But I guess postponing a decision is a decision of sorts and frankly the only one I am currently capable of making. Most unlike me but these are after all uncharted waters. And I have decided that I will wear my asymmetry as a badge of honour-and remember only try on new bras when I am feeling more robust (a long story for another day..)

Our experience this week of course confirms the importance again of early diagnosis whether it’s for cancer, heart disease or a long-term condition like diabetes. The sooner the treatment commences the better for all, including the stretched resources of the NHS. Charities like Breakthrough Breast Cancer, BHF, Diabetes UK and many others do vital work raising awareness to improve early diagnosis knowing it saves lives and quality of life too. Working in partnership with the NHS is powerful and it would be great to see more of that in the future to enhance the impact of all our work.

Reasons to be cheerful are of course happy endings and the love and support of family and friends. I am hoping to see the new Jane Eyre film soon too. The actress was Sophie in “In Treatment” (great series about a psychotherapist starring Gabriel Byrne) And she is a stunning actress. We have two Mary’s visiting tomorrow: my mum and the West Highland terrier puppy of the same name. I am sure they will get on…less sure about Koshka though. Also our daughter comes for a few days before heading of to a wedding on the Mull of Kintyre…all together now ……!

Sunday, 4 September 2011

Morph suits, Marvels and finding the X factor.

The sun is shining today and it’s also the day of the Great Scottish Run in Glasgow. Professor Mike Dixon who is clinical lead of the Breakthrough Research Unit in Edinburgh and hero of many (including me!) is running the run to race funds for Breakthrough Breast Cancer. And not only that but he is accompanied by Mike’s Marvels another 20 plus runners who are joining him. They all have reasons to be grateful to Mike and what a super way to show it. And they aren’t the only marvels either- several of the Breakthrough Scotland team will be there with him running…and we are talking dressing up here. One of them is wearing a very pink Morph suit……..I know that’s brave any where but it starts in Glasgow Green. I hope there is police protection-but no arrests!

The morph suit sadly is not on brand. It’s the wrong shade of pink you see. Having mentioned that on twitter my colleague then received a tweet from a company in the US saying they made such suits in magenta-too late for him to get the brand colour on time but if we ever want to make it the corporate uniform we know where to go….The tale of him practicing running in it the other evening-by a local school and police station was hilarious and just a wee bit worrying too. It did make my cough worse for a time but frankly it was worth it.

So I am back to work again. Feeling a bit embarrassed that I have been ill again. Its given me some time to reflect on why and I know really its because I haven’t given myself sufficient time to recover. I think my mantra of “this won’t kill me, its very early stage and I will be fine” has probably stopped my giving the experience the respect it’s needed. Admitting that makes me feel a bit stupid given my role-you might say I feel a pashmina short of wardrobe (thank you “Miranda” now that’s what I like to call funny!) but I guess that’s another condition I am not immune to! I also know I am not alone with feeling this way. Perhaps we need to get better at guiding people through these experiences-so cancer rehabilitation properly resourced and prioritised becomes the norm for people not just the lucky few. And of course a cancer experience never sits alone- I moved house less than a year ago, have extended the house and it’s a very busy job I do. And one that I love, working alongside great people-so I really don’t want to be off. But I know I need to look after myself better and I am working on that. So I haven’t joined them at the run and I wont be doing any long distance walks this year, I will minimise my travel and hopefully at some stage manage a break that isn’t really sick leave in disguise……and I will build in some more relaxing and meditation time. One of my colleagues suggested they could sponsor me to stay in my bed…seriously tempting idea too! I have booked a trip to my daughter’s at the end of the month and I am really looking forward to that.

This week finds me returning to the GP and going to the breast clinic too. Both occasions will remind me of my fragility. Visits to the breast clinic are always those occasions when you return to the emotions and you can touch the atmosphere in the waiting room. I guess that’s one of the reasons the waiting rooms and follow up appointments are often a focus in the Breakthrough Service Pledge. Patient experience feedback reminds us that all of the cancer experience impacts on your well-being.  And I am aware that any further surgery is really not an option this year-I am just not strong enough just now. But luckily I don’t need to rush that decision. It will be good to have an opportunity to talk it through. I will let you know how it goes.

Reasons to be cheerful are going to the Fireworks that herald the end of the festival tonight. The backdrop of the castle and the display set to the music of the Scottish Chamber orchestra is quite magical. And also the Edinburgh citizens get their city back too.( I wont mention the trams-too painful!)
OK I will also admit to a guilty secret- I am watching the x-factor and am just a bit smitten by Gary Barlow. I haven’t ever bought a Take That album but I find him warm, knowledgeable, gently funny and kind-now that’s the x-factor for me….and he’s kinda cute too! Enough!

Saturday, 27 August 2011

In memory

Five years ago today we were with my step-daughter as her Mum lost her hard fought battle with breast cancer. It was such a terribly sad time not only for her family but for Julia too. She had so much more living to do and a much loved family she wanted to do it with.

She had missed a mammogram as she had had another problem with her health and decided to put that one off till a better time. A scenario many of us would recognise. It was when she noticed a change in her nipple and mentioned it to her daughter that she finally realised she needed to have it checked. She didn’t know till then it could be a sign of breast cancer.

Like many women ( as our research at Breakthrough Breast Cancer confirms)she wasn’t familiar with the signs of breast cancer beyond a lump. Having also missed a breast screening appointment meant that when she did finally seek medical help, the cancer had already spread. Her treatment consequently involved surgery, chemotherapy and radiotherapy. Throughout her treatment she found balancing work an increasing burden and she felt she had to give up a job she had previously enjoyed. This left her much more financially vulnerable but allowed her still to have time and energy for her granddaughters. Every minute of that time with them was precious to her.

After her active treatment was complete she then opted to have a reconstruction of her breast. She had great confidence in her breast surgeon and demonstrated that not only by opting for the surgery but also, in typical style for her, sending him a valentine! The results were excellent and she wasn’t too shy to show that to help anyone facing a similar decision. The team who looked after her often spoke of her positivity and how inspiring that was.

But sadly that’s not the end of this story as suddenly following a spell of abdominal pain was investigated liver metastases were discovered, less than two years from her initial diagnosis. She was very ill very quickly, which was devastating for her and her family. They were robbed of time to have all the conversations they wanted to, the special treats that make the memories to savour, the quiet times just to be peaceful.

She and I had some very moving conversations over that time. Our shared experience of breast cancer and of course the family links had given us a unique bond. I know she clung to life as long as she could, she desperately wanted more time to see her beautiful granddaughters grow up and that she faced her dying with great courage. Its hard to believe its five years already. Much has happened in that time, including her daughter and mine doing the Moonwalk in Edinburgh with me. She was much in our minds that night. At one point, trying to encourage her daughter I said “What would your Mum be saying to you now?”. “Have you seen the state of your hair” was her reply and recognising a real truth we all laughed. But I know she would have been deeply proud as was her Dad as he greeted us at the end.

So five years on I write this blog entry in her memory. Time heals but also these anniversaries can remind us how much we miss those we love no matter how long it is.

Reasons to be thankful: Research continues to improve so that the outcomes for women like Julia can be different- as a result of our work more lives are being saved. Also there is investment in improving early diagnosis across the UK. Because lets not forget that had she been diagnosed earlier she might still have been here. So be breast aware , promote TLC wherever you can and encourage those you love to go for breast screening.

Wednesday, 24 August 2011

A bad case of cant egt the bed off my back!

So that’s me back from holiday and sunny Edinburgh is crazily festival manic .I started the week visiting my GP since I had had to buy antibiotics while away. I also found I couldn’t stop coughing on the flight and my inhalers were just not helping. So there I was conceding that wonder woman has well and truly left the building. The GP not only prescribed steroids for the asthma but also rest and time off work. After two days of resistance I have finally given in and I write this from my bed, propped up with pillows and sustained with warm drinks. So much for the post holiday benefits!

I have been searching for mindfulness classes to support my self care and trying not to give in to the “I don’t have time to commit to that” mantra. You see there is insight but still long engrained behaviours to address. Wish me luck on that one….

Whilst buying my over the counter antibiotics it started me wondering about our very different approach at home. I did know what to ask for, understood the problem and engaged my self management approaches and followed the advice. I knew to see my GP when I was not improving too. Could we trust people to do more of this over the counter self management if we empowered them with the right information? As we struggle to balance the books of healthcare, letting go paternalism and giving the right information , education and treatment to people at the right time to allow them to live their lives as best they can seems a good step forward. We need to keep challenging status quo to help us move on and best utilise reduced resources.

I notice how although I suspect my current illness is really a result of my immune system being challenged since the surgery, I still find myself wondering if it might be more than that. Anyone living with cancer will know this routine. Is that pain in my chest just asthma or could it be lung secondary’s, is my tiredness due to some underlying problem, are the pains in my back bone mets and so on. Its really mainly the 2 am shift that brings them to the fore but the steroids make sleep more difficult so it’s a double whammy really. I know with such early disease its just what it is-the fact I haven’t given myself enough rest to recover fully from the breast surgery but I am still human after all!

Today I had planned to help deliver a session at the NHS conference on transforming quality working with the third sector. Although I hate the third sector title ( who says we aren’t first after all?)This is a great opportunity to promote our work as a sector. The great things we do to support people to get through their health challenges. They will talk about the LTCAS self management campaign-“My condition, my life” and one of our volunteers will talk about the Breakthrough Breast Cancer Service pledge-illustrating how that partnership between health service, charity and volunteer can really deliver person centred care for all. It’s a great project, one I would love to see more benefit from. Wish I could be there but they will do a great job without me and today ( Matthew!)I am going to be a patient, patient and practice what we preach….. Aye right!

Reasons to be cheerful! Yes there are plenty still. It really is nice to be home with friends and family. Koshka is happy to see us. He looks huge compared to the leaner varieties in Bulgaria. He was quite excited to see the pink dressing gown re-emerge as I took to the sofa once more… Don’t ask! And the final touches to the house are nearly there. It looks fab.

The festival marches on but I haven’t managed to enjoy any yet due to an embarrassing cough and  bad case of cant get the bed off my back. One of my colleagues is doing a show at lunch time this week so I really would like to go. Maybe I can at least sneak a visit to the book festival -its my favourite spot-you see I am a woman that knows how to live!I did read one of the top ten fringe jokes was "Did you hear David Cameron has decided to set up an 80's tribute government?" This isnt a political blog so I will leave it there...


My wonderful colleagues are also cheering me up with dedicated punning, morph suits and an unstinting commitment to making a difference-you are fab!

Saturday, 13 August 2011

Bulgarian rhapsody!

In a week that has told of riots I feel a long way from such things. I know there has been a special debate in parliament and I have no real appetite to see the detail given some of what I have read. Perhaps its because the greatest excitement we experience here is the visit from the neighbourhood cat and the goats. But maybe its also because of the predictability of the response. Undoubtedly there has been depressing engagement in criminal behaviour by those who should know better but is that all it is?
It has reached the headlines here in Bulgaria and as our friends here say there is always a reason for rioting. It hasn’t happened for many years in the UK and we need to learn from it. Can it be a coincidence that they have sat alongside the panic in the markets we saw last week. When it appears that the “experts” may not know everything and more livelihoods and homes seem at risk, how do people with the least hold onto hope? I know many lives have been damaged by these riots but lets not simply focus on the immediate and look more closely at the underlying issues.
There is no doubt that economic uncertainty affects the work that charities can do and I do have concerns about that. But more immediately with regard to my work it also impacts on those who have cancer. We know a diagnosis of breast cancer like other cancers and indeed other long term illnesses affects peoples economic well-being as well as physical. Whether that’s the ability to still stay in their job or career, work full-time, travel or whatever the impact I know from my own experience too it does change things. It reduces options and increases uncertainty.
Applying for new jobs or making a career change can be hard when you have had a recent diagnosis of cancer. My current role is the only one I have been up-front about having had cancer in the past. And it has never affected my ability to work hard and do a good job-but I have been lucky. Changes to benefits can leave unwell people poorly provided for and we need to collectively ensure that this doesn’t happen.
I find myself wondering as I sit looking at the mountains in this wonderfully healing environment whether I could make different choices to allow me to do more of this. And while that may not be a bad thing, the reality is I wasn’t thinking that before my recent diagnosis. Its not helped by me having a chest infection-more confirmation I have not as yet recovered. Still what better place to recover than here.
We have just had a visit from the lovely Jacko and his owner the shepherd. The goats have been eating the unripe grapes at the bottom of our garden this morning- a red letter day for them! And the cat is back. We call her Koshka too but forget she doesn’t know that. For several years we have worried about what happens in our absence but now she is no longer a stray. She has a collar on! My friend this is not just a badge of ownership-its one of love too. I am so happy for her.
I love to watch the birds from the balcony ( its an exciting life you can tell! I call it an antidote to a busy life….)and it strikes me there is an organisational management book in this maybe? What we can learn from bird behaviours. The swallows sit on the wire and chatter then play either catching flies in the thermals or dance close to the water. They disappear when the eagle appears. The eagle prefers the strategic perspective and lets them know of their presence by the piercing call. The jays are noisy and colourful but not to be trusted. And the red shrikes just got me out of my chair to explore what they are pursuing together-a fascination with the pear tree is part of it. Not sure about the behaviour here other than they are cute with their mask of zorro characteristics. Fortunately no seagulls. We don’t need any of their management techniques-fly over-s..t on you then fly off-do we?
Reasons to be cheerful are happy family times. Last week at a family wedding with my daughter to share it with. Re-engaging with family members was special. The sight of my English husband in his kilt at a Geordie wedding was good for the soul! Good times indeed.
Now with more family out here in our little bit of paradise. The snow has gone off the mountains but they shimmer with sun and the full moon of the last few days has lit the night sky up in a dramatic fashion. Warmth, wonderful healthy and cheap local produce and good company. Musical accompaniment has included the new album by Alison Krauss-beautiful. Her band were the “soggy bottom boys” in Oh Brother Where Art Though. Both I recommend highly.
I feel a need to plan my next trip asap!Ciao ciao!Oh and any takers on the book idea?