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.