Tuesday, 28 June 2011

From a distance

I seem to be thinking in song titles currently…now that could be the stuff of a whole blog itself! But this time the title is From a Distance…the Nancy Griffith version please. And not only does the world look blue and green but it also does put things into a perspective. Some of that’s good of course…the petty annoyances that can overtake me at times, the work demands that recede with backdrop of the mountains, the need to paint the hall way unimportant without the daily reminder….

What is less good is that without the other clutters of life the reality of my recent experience couldn’t be ignored. It is the realisation that I didn’t just dream it but it really did happen. When you are in the middle of it, it just finds its own momentum and adrenaline takes you through. My experience this time and before is that its afterwards that the impact of it all can hit. So some part of my lost mojo is about reacting to it all both physically and emotionally. There is a rhythm to this and the low notes have to be in the mix too.

The other sharp focus is of course that summer clothes take no prisoners and I have been forced to review the wardrobe for post surgery impact. My very long-suffering partner has had to endure endless questions of does this look OK. It’s a strange version of does my bum look big in this-you can fill in the blanks yourself on that one! And lets be honest, feeling depressed when I see the lovely olive skinned beauties by the pool isn’t just about the impact of surgery its got a bit to do with the aging process, the one crisp too many syndrome and freckles. Its an ill divided world when it comes to freckles. My daughter has protected her celtic beauty with factor 30 but that train left my station long before sun protection factor was developed I’m afraid. Hey ho. But I guess the experience has given me more clarity for my decisions I parked last month. Not sure there’s a cure for freckles though.

These decisions are so complex and need time to be worked through. I do wonder how we reconcile delivering person centred care with setting targets. Whether those targets are for reconstructive surgery for example or targets for those receiving benefits. The complexity of the impact of a cancer diagnosis means that this affects all aspects of our lives physical, emotional, social and work life too. I know that the impact on me is different now to previously-and that’s within one person. So it has to be about the person-not targets for the system. Breakthrough Breast Cancer’s own service pledge process allows us to review the person’s experience of care to continuously imporve the quality of the care provided. It’s a really important way to drive quality and I am very proud of the impact it has made already for people affected by breast cancer. The unit I had my treatment in has embraced the Breakthrough service pledge and it shows.

Reasons to be cheerful are the sleep therapy of 10 days in the mountain air. Time to just be peaceful, read some books, laugh and have time with people I love. I recommend it. Oh and some music too.Good times.

Tuesday, 21 June 2011

For the Roses

Fathers day has left me thinking of my own father as these days do.He died now almost 17 years ago but he is often in our conversations and certainly in our hearts as a family.I havent mentioned him yet in the blog and my reflections are in part its because it felt too close. In the last few days as I have thought of this a line from a Joni Mitchell song is returning to me.Its from "For the Roses" and its the line about a poet who asks someone " to circulate his soul around". Talking about this in the blog feels a little like this but I also know its part of not only my story but many others too.

When I was first diagnosed almost 17 years ago my father was also being treated for prostate cancer. During my treatment his condition became terminal and he died two weeks after my radiotherapy ended, probably my lowest ebb. I am sure I dont have to describe how hard that was for everyone.It made all the experiences harder for us all and took its toll for a time. Its also probably what gave me the drive to do what I do not only for breast cancer but also in my wider work, trying to make a difference. I see it in others too in our sector where their experiences leads to fantastic efforts to improve things for others.

The experience for families affected by breast cancer across and through generations is hard to describe-the combination of fear for those you love and if like one mother and daughter I met you end up being treated at the same time its also not being able to help just when you want to most. I know from my own experience how cruel this is. What we know currently is that 80% of breast cancers are not inherited but Breakthrough's research has certainly opened up more understanding and treatments further down the line for those who are.

I have wondered of course about the link with prostate cancer-some of the treatments are even the same-again its why our Breakthrough Generations study is so important to further understanding. Like so many of you I really want to do what I can to stop more generations of my family experiencing what we have had to.
So all of you who celebrated fathers day I hope it was special and for those like me who do what you do in part in their honour-I wish you ongoing success.

The reasons to be cheerful are many just now. I write this from a beautiful setting where I am bewitched by snow cap mountains and the smell of the rose field in front of the house. The neighbours are largely goatherds and shepherds.One shepherd is a regular visitor. With a beer in hand he will regale us with tales in a language we dont understand. The tales are peppered with names like Margaret Thatcher and David Cameron. He clearly has an opinion on both and I consider asking his opinion of the health reforms in England but I am not confident I would grasp the nuances of his reply! His dog Jacko has taken to regular visits-for company and biscuits I suspect. I think its perhaps some time since he visited the poodle parlour however. Come here just now Jacko till we find some of that nice rose water........

Tuesday, 14 June 2011

Always look on the bright side of life-de da de da de da de da

What a beautiful and moving day Saturday was. I attended the wedding of a colleague and although it sadly rained all day it didn’t dampen the warmth and happiness of the day. As always-big events in life can bring sharply into focus earlier losses. The groom and his brothers made sure that during their speeches they remembered their Mum who they had lost to breast cancer several years earlier. I had met them before at our supporter event last year when they raised a fabulous amount and honoured their Mum’s memory by putting her name on the wall. I was moved then by what they had done- and feel sure she would have been so proud of them. It was evident on Saturday that losing their Mum had resulted in the forging of a close bond between them. She would have gained great comfort from that.

That links so much to a conference I also was part of this week. Harry Burns the Chief Medial Officer in Scotland spoke at it. He spoke of research that looked at what helps people survive adversity and what it found was that having a sense of control and purpose played a big part. It made so much sense to me. Its partly why I am writing this blog and doing what I do in my day to day work. It’s about  turning my own experience round to create something positive.. And I see it in all our supporters too. Whether they campaign for change, volunteer with the service pledge or fundraise in weird and wonderful ways. It’s what working with a charity is all about-giving back, supporting others and changing things for the better.

If I may be allowed a moment of vanity, the conference organiser when she met me said I was wearing a lovely outfit. If she had seen the sudden wardrobe changes earlier because I was unhappy with how I looked post surgery, she would have appreciated how lovely and timely that comment was. I was also wearing the wonder woman eye shadow with pride and I like to think that clinched it too.

Reasons to be cheerful are we are back in the house! The kitchen is almost fully functioning and is really really lovely. As for the rest of the house following the impact of the work….what can I say? Koshka the cat loved the bright kitchen that is soon to become all our favourite room in the house. But after walking up the hall he shot off in disgust and found a space under the bed and stayed there. I really could sympathise with his decision. Do you think there is space for me too Puss? ……..No I will just get the marigolds on and won’t look back!

Thursday, 9 June 2011

Support is everything

The morning of the Supporter Wall unveiling I admit I was a bit anxious. But excited too. I so wanted to be part of it. The people who do so much to support us are our life blood and I didn’t want to miss this chance to meet them, hear their stories and most of all say thank you. But it was also that world's colliding moment for me too. How would I manage to be part of what is always a very emotional occasion?   

One strategy was to wait until I had spoken before I had in depth conversations with any of the supporters. I also knew that several people there were reading my blog and aware of my situation so felt it best to acknowledge it. What’s more the person I was introducing to speak after me was none other than Professor Dixon, my surgeon and the clinic lead of the Breakthrough Breast Cancer research unit in Edinburgh. Don’t worry all went well but the moment I introduced the day by saying that more than 4,000 women every year in Scotland are diagnosed with breast cancer and for everyone there is a huge impact for them, their families, friends and colleagues I admit to swallowing hard before I could continue. As ever it’s the mention of family that touches the vulnerabilities.

Speaking of families my re-return to work has caused them some concern and my learning from this experience is to allow myself more time in the future to recover from any surgery. Had I cleared my diary in advance the psychological adjustment would have been better. And I recognize that rather than think, I need to do less, I am at risk of just wanting to find some kind of energy transplant. The mojo search continues but it is good to be back. Honest!And the supporter event was excellent. Thanks for all you do-you inspire and humble us all too.

The plastic surgeon laid out my options and favoured the most conservative approach which I find myself increasingly drawn to. But really I have decided to park any decisions till the autumn to allow me to adjust physically and emotionally to my new reality. Remember that advice not to rush a decision? It’s so true. The decision I would have made 2 weeks ago has already changed as my emotions settle. How many women feel the need to decide then regret it I wonder? Are Health Service targets for reconstructive surgery really the best way to ensure patient choice is paramount?

Reasons to be cheerful are the great media coverage we had this week around our breast awareness survey. It gets our TLC message out to so many and I am sure will have helped to save some lives by recognizing a sign or symptom early. My second day back found me on the Call Kaye Radio Scotland phone in talking about TLC with one of our supporters talking so bravely about her own experience too. It was a great programme. Thanks guys!
Also don’t tell anyone but sneaked back a little bit of under-wiring with no ill effects. No mojo yet but hints of wonder woman returning! Roll on the weekend….

Sunday, 5 June 2011

Wish lists

I have  already spoken of feeling my every need cared for by the team in Edinburgh and this week has been no exception. Given the infection I had experienced they were keen to see how I was. I am progressing but admittedly slowly.Apparently the fact I have had radiotherapy makes me more at risk of infection. Like so many treatments for cancer the side effects can have a lasting affect. As its part of the reason I am here 16 years later it would seem churlish to complain really.......

On Tuesday I have an appointment with the plastic surgeon to advise me on options for the future. Its not a phrase I ever thought I would use. I would admit to some vanity (!) but have never thought of resorting to surgery. Basically I am relieved that my eyesight fading means I cant see my wrinkles however an appointment with a plastic surgeon has found me creating a wish list in my head-mmmmm.No forget it Audrey!

All along I have felt a true partner in my care , I have been detected early, given a personalised diagnosis , supported in my decision making, had modern evidenced based treatment and I have trully been supported and cared for. But this week the media has been full of care failures accross the UK which I know I wont be alone in finding distressing. My own experience demonstrates how good care can be in our society. So what is different?

The leadership demonstrated in the unit in Edinburgh is oustanding and one of the reasons Breakthrough Breast Cancer invests around £1 million every year in Scotland in our research unit just above the breast clinic, focusing on hormone related breast cancers like my own. We know that commitment to delivering  and improving care is translated into groundbreaking research to benefit people accross the world.

So leadership is key but maybe its more than that. The care crisis is particularly in the vulnerable sections in our society, the elderly and those with long term conditons and disabilities. In Breakthrough we recognise that there is inequity of breast cancer treatment experienced by older people in the UK and an important campaign for us is to ensure that  high quality care and treatment is available to all whatever their age or wherever they live. Big challenges for our health and social care services but we need to rise to them.My real wish list is to see these challenges really being acknowledged and prioritised for change.I for one will play my part to work toward this.

Reasons to be cheerful are we have booked our holiday with the family and given that its 10 degrees in Edinburgh today, the heatwave being shortlived, the days are counted. Also I think I should be well enough to attend the event tomorrow, unveiling this years supporter wall. There will be almost 100 people there who have supported our work in Scotland so generously. It will be fantastic to meet them and of course the wonderful Professor Dixon will be there too. Will let you know how it goes.....

Thursday, 2 June 2011

Missing in action.....

Its official! I have lost my mojo. I thought it would return without an offical search but no. So I would like to report MIA one mojo-please if you find it return it to its rightful, if rather careless, owner. 

I do at least know the reason. I finally recognised that the swelling and pain was getting worse and that I have an infection. Happily its now improving with antibiotics and rest. But I am off work again. Sorry team Breakthrough .....but if you join in the search for said mojo I hope to be back before too long! So not wonder woman after all eh? I blame the lack of under wiring personally:-(

To aid return of mojo I hope to prepare over the summer for our walk in Perthshire. I have done long distance walks before and love nothing better than walking through beautiful parts of Scotland. This is part of a new trail through Perthshire and takes place on 9/10 September so lots of time to prepare. Would you like to do it with me? It should be great fun and uplifting ( no pun intended) to boot! So baby steps starting next week is my plan. Fingers crossed.....

The attentive of you will notice i have not mentioned the new kitchen. Now dont get me wrong I can see a thing of real beauty emerging but there are two holes in my hallway and I dont have a functioning kitchen or loo.....So I am with my good friends to escape. Consequently I missed the phonecall about an early appointment with the plastic surgeon and the letter arrived after the appointment.Its not a disaster but it felt that way for a while. Next time!

Reaons to be cheerful are I heard from a friend she has bought the Matthew Williamson bracelet being sold for Breakthrough Breast Cancer by Accessorize. I have bracelet envy....wonder if I can get away with putting it on the shopping list. Also we have a heatwave predicted....or what passes for one in Scotland anyway.  Not holding my breath on that one!