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 ...

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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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!

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.

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.