Audrey’s Blog on living well with disability and breast cancer

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

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 m

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

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

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 r

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 ...

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 An

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

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

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 m

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 ye

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.

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 palpab

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

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 a

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 f

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 pai

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

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

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 pr

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 le