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!