Thursday, 28 July 2011

Blocked blogger!

I have tried to write this three times now-hence the delay in my blog post. I think it’s been hard to put down some of the things I have been thinking of this week. What sad times there have been over this period. As well as national news stories I have also had some closer to home. One of my friends from the leadership dialogue has been killed in a road traffic accident. I have found myself very affected by it and moved too. A life cut short feels so wrong and there is no doubt many will miss him.

The national news has been relentless too. Losing your child from famine, murder or addiction is not something you should have to experience; it’s not the natural order at all. As an emotional being at the best of times I do find myself easily moved to tears at the moment and this week more than others. But I won’t apologise for that-its allowed I guess.

So the other news that has had a huge impact is that one of my friends and has also been diagnosed again with breast cancer. She faces extensive treatment and I feel so upset for her. I am having difficulty finding words but I know I am so angry for her. It’s just not fair. Life really shouldn’t have to be like this. I also feel overwhelmed and angry too at the relentless impact this has on so many women and those who love them. And I am scared for her too-knowing what she has to face. It’s not just the treatment, it’s the times in waiting rooms waiting for results, it’s the “what if’s” in the quiet moments when no one is looking, it’s the uncertainty. There isn’t a pill that can take that away. Just the love and support of those around you  can make it easier to bear.

It might not be logical maybe but I feel guilty that I have got off more lightly than she has. I can’t change that-you feel what you feel- I just have to accept its part of it too for me. I have had this experience before when I have lost friends to breast cancer-survivor guilt I guess. But I also realise and value how lucky I have been so far and do count my many blessings. It sounds a bit cheesy, I know, but its true.

I remember my husband saying after going with me to a follow up appointment many years ago“ It never goes away, does it?” And in those early days it’s true, each appointment is accompanied by fear of recurrence and the clinic environment evokes the emotions again. But in time that fades, as it should. But I guess what that also does is leave you ill prepared for being back there again. Maybe that’s a good thing after all. I know it took me a while to realise that all was not well during my appointment. My self-protection mechanism kicked in and I slowly absorbed the information that instead of going home I was heading for a biopsy. Denial can be useful I guess.

As can regaining an element of control even when not everything else is not in my gift to control. I have found that getting back to walking has helped me feel more like myself. I have walked to work listening to music. The Travelling Willberies are good for a decent walking pace unlike Leonard Cohen. Thanks for the other suggestions to listen to-not sure about them all but will widen my options nonetheless. But dancing down the road to work will just get me locked up guys! So my big tip would be do whatever exercise you can, if you can. It has really lifted me, not just the endorphins but knowing that I can do it too. Small steps lead to bigger ones.

Reasons to be cheerful? I am really struggling today with this because of the news this week. But reasons to be thankful are that treatments are improving and I know my friend will have the best people fighting in her corner. Our research at Breakthrough Breast Cancer is saving lives and progress continues. I just wish less lives were lost and affected by it. And for those who are grieving just now, wherever you are, you are in my thoughts.

Wednesday, 20 July 2011

Reflecting on the impact on families famous and ones like mine!

You could not fail to be moved this weekend hearing the interviews with the winner of the British Open golf, Darren Clarke. He expressed along with his delight, that he had done it for his boys. Visibly fighting tears he was acknowledging the importance to the family of his win following the loss of his wife five years ago to breast cancer. Darren has been a generous supporter of Breakthrough’s work and we are so grateful for that. We understand so well the motivation to ensure other families are spared this pain in the future. Thank you Darren and all those who support you.

The poignancy was also reinforced by the knowledge that he had given his support in recent years to Phil Mickelson too (the runner up at the Open) whose wife and mother had both had treatment for breast cancer. Both are surviving thankfully but their own experience has also had its impact on the family. Seeing the dual impact on these families is such a shocking reminder of how common this experience is for so many and how much work there is to do to change this.

It’s made me reflect on the impact on my own family. Perhaps its again feeling less robust that has taken me back to last time when I felt that my treatment then robbed me of my wellbeing for some time. I worried that I short changed my family because I felt much more tired than normal and consequently had less to give. I was also just a bit flatter than normal and that in turn led to their lives being affected. A house that has less music and laughter isn’t what I would have wanted. But the mojo did come back in time and it will again. In fact I had the ipod on its deck the other day while I made Sunday dinner….mmmm it was Leonard Cohen however. Oh oh!

What I have also seen is that the impact of having a major illness on my family is that it has deepened their sensitivity to others in similar situations. On many occasions I have been struck by their maturity and compassion for others and also their ability to help them because of our experience. I guess that has helped me feel more reassured that maybe some of the negatives have been offset by the special qualities they have developed along the way. But really only they can answer that I guess.

I have arrived for a couple of days in London. My cold is improving and I have walked home once but not sure it really amounts to much progress in terms of the training yet. Must do better!

I will seek opportunities to walk when I can in the next few days and start again for real when I return home. I am also looking for Mindfulness classes to help retain a sense of peace and restoration as my busy world begins to fight(!) back.

Reasons to be cheerful: Connecting with people through my blog is such a great thing. Its not only people who are new to me and travelling a similar journey but its also connecting with old friends and those at a distance too.Its great to hear from you all-thank you.And the weekend finds us heading to Glasgow for a quick visit. I hope to go to the new transport museum as well as celebrating birthdays with those I love! I have heard the new museum is fantastic. There is always that moment of course when you realise that your first car is now in a museum or the bus that took you to school is now seen as a classic! I am also a member of a rare species; I love both Glasgow and Edinburgh. Is that wrong?

Friday, 15 July 2011

FiREBUG Friday!

This finds me in TGIF mode, thankful it’s Friday. Although it was a quieter week I developed a virus in the middle and its left me with a sniff and a wheeze! It’s not the virus that is the biggest problem it’s the fact that my asthma kicks in and disrupts my sleep and well-being. What I know from before is that having treatment for cancer on top of another condition like asthma can really increase your vulnerability.

When I had radiotherapy last time I got a cold and ended up needing steroids. The fear of coughing while having a radiotherapy beam aimed perilously close to your heart is quite something. But I am still here so disaster was avoided then. And radiotherapy is undoubtedly a life saver for many forms of cancer. However my trip to the Western Isles reinforced for me the impact of several weeks of radiotherapy can have on someone’s life especially if they are from a remote or rural part of the world-as many parts of Scotland are. The knowledge of that impact can lead to decisions about treatment that will avoid the need for it. So more women in the islands have mastectomy and less have reconstructive surgery- a situation we have not found acceptable in urban areas for sometime.

So what can change that? For the moment its ensuring acceptable pathways for care and treatment eg travel, accommodation, rural follow up clinics etc. But in the future it’s about more targeted therapies. Through Breakthrough’s research we are finding more ways to understand people’s genetic profile and therefore understand what treatment they need when. And new technology is enabling this to move forward with the urgency it all requires. We now have technology that can decode an entire  genome in two weeks which would previously have taken several years. The opportunities this gives for the breakthrough’s in the future are wonderful.

But this technology costs hundreds of thousands of pounds. And these are difficult times for all charities. The dilemmas this presents are real and no more present than this week. Much of the chatter has been would you have accepted funds from the last publication of the News of the World for your charity? Now I would accept that I have a liking for the moral high ground on the odd occasion so I was quite clear what my answer would be until I heard that one charity stood to get almost £1 million. Mmmm what could we do with that in Breakthrough?-even one more life saved, one family saved from pain and distress is of incalculable value. So am I really guilty of saying the value outweighs the integrity of the offer? The integrity of a charity should never be in doubt or its very existence is put at risk and the people it is there to serve ultimately let down. But the reality just now is that many charities are fighting for their very existence. These are not easy decisions and are the things charity leaders face regularly.

So a very personal contribution from me has been to make the decision to do our Perthshire trek in September. When I re-read the documentation and realised its 16 miles I had a moment of panic! My inattention to detail is one of my challenges in life I do admit. I have walked back from work twice this week. Big deal I hear you mutter and you would be right. The viral illness has got in the way so next week the plan begins in earnest. (Have you heard that before?). I promised to keep you posted on my progress so I will. The breast care nurse also made me promise to look after myself. It is my hope and my theory that the two are not irreconcilable! Your support and encouragement will help so much. You can sponsor me here if you are able.

True to form I at least have the outfit for the walk in the bag-it was in the sale honest. It’s not so much that I am vain but I do like things to match. So much so that I found myself about to touch someone on the shoulder in the bus this week in order to point out her red and yellow scarf clashed terribly with her blue and white striped dress. I stopped my self in time but in that moment accepted that it was up there with my airport rage episode. Perhaps I need to get that “I haven’t been well you know” t-shirt printed after all? It may save me from a black eye.

Reasons to be cheerful.  Its Firebug Friday again and a proud Aunt and Uncle are joining us this time in the cheering party. Also we are meeting up with a group of people to see some classical musicians from Japan, followed by sushi in a lovely setting in Edinburgh on Saturday. And I have been promised to meet up with Mary. Who is Mary you ask….she is the new West Highland Terrier puppy belonging to our lovely friends. I am so looking forward to it. We lost our much loved Golden Retriever 2 years ago and I still miss him so I expect to have serious dog envy. Maybe I will manage a wee walk too?

Sunday, 10 July 2011

Poetry and truth!

I started this week reflecting on truth and leadership. The importance of that resonated as the news stories emerged over the week about News of the World. Although the mission of that organisation for 168 years apparently had the pursuit of truth at its heart, it had, by its own admission, lost its way. That has to lie at the feet of those who lead it. People follow people, not words in mission statements or strategies-they follow the behaviours and messages (spoken and unspoken) delivered by those at the helm. Strange to think they felt that the pursuit of truth could be through deceitful means. If the demise of this newspaper can lead to greater wisdom then maybe there is hope for better things to come?

What was obvious was the power of social media again to create a momentum for change. Through media like Twitter, Facebook and Mumsnet the means and drive for a message to be sent to the newspaper owners was delivered. There is undoubtedly massive opportunity through social media and I am recent convert. Although Facebook for me is really only close friends and family, through twitter I am in contact with many others and that is really quite exciting. Breakthrough Breast cancer’s ibreast check app recently won a new media award of which we are rightly proud. Because using this approach we have reached so many people with a breast awareness message and our research indicates this is still a message most women need to learn. You can also find all our TLC (Touch Look Check) breast awareness advice on our website as well. Both examples of how this new media can deliver for the good. 

Such is my belief in new media I have been asked to talk about this at an event for the NHS later in the year. The invite did make me giggle a little. I am living proof that old dogs(!) can indeed be taught new tricks. This is the same woman who had to ask her then 6-year-old son how to do something on our new PC. He said, “ I will show you Mum and write it down for you”. I was proud and mortified all at the same time! Fortunately he shows the same level of tolerance now…

The other thing I did this week was visit the clinic as you know. It was really helpful to talk things through. I also saw the surgeon, as my healing isn’t quite going to plan-nothing serious- just a result of having had radiotherapy in the past. What it does mean however that my master plan may have to be flexible. It did make me feel a bit sad about the impact of two lots of surgery on my breast. For some reason some lines from the Burns poem Tae a Mouse kept coming to mind! More of that later..
The other thing I was persuaded to do was go home from the clinic rather than return to work. Atypically I took the advice because my exhaustion of a heavy week was compounded by the emotion that a visit to the clinic can evoke. Pacing myself remains my challenge but Monday awaits and I am more rested as a result of heading good advice.

Reasons to be cheerful are being able to cook up a storm for the family today in my new kitchen-it was great. A lovely social space to share and the food was good too!
And I have adapted the poem by Robert Burns and created a little Ode (in old Scots as was his tradition) in honour of my left boob and the bard himself. Somehow given his reputation I think he would have approved of (and forgiven me for) an ode to a breast!

Tae a breast!

Wee sad and broken tim'rous breast,
O, what a panic was in my head!
I need na worried awa sae hasty,
Wi' fear and fright!
I wad be laith to lose thee
Withoot a fight!

But breast, I tried before wi’ sma’ gain
In proving foresight may be vain;
The best-laid schemes o' mice an' men
Gang aft agley,
An' lea'e me back to face more pain,
And chance o’ more!

Still I am blest, we must agree;
Only the surgeons knife will toucheth me:
And och! I must cast my e'e,
On hopes for prospects cheer!
An' forward, tho' I canna see,
I guess an' try no tae fear!

Thursday, 7 July 2011

You take the high road....

What a week this has been. I have been to a beautiful wedding on the banks of Loch Lomond, I have been part of the Windsor Leadership Dialogue in St George’s chapel within the grounds of Windsor Castle, I have spent two days in our London office and now I am back in Edinburgh. And yes you’ve guessed it….. I am truly knackered! Not a very lady like term but frankly exhausted just didn’t cut it.

Its been an interesting journey for me. I have realised just how tired I still am and although much better than I was still not quite there yet. The clamour of airports, train and tube travel, hotel rooms just felt too much at times. I think its part of the same impact that stops me watching TV, listening to the radio and to music too much, my brain is just too tired. The reminder I am not just healing physically but mentally too. The screensaver on my phone is the scene of the mountains from our balcony on holiday and I look longingly at it whenever I can.

Waiting for my delayed flight yesterday-which meant I wasn’t home till 11 pm I had a moment of airport rage. As I went through security setting off the beep, the security officer barked “shoes off” at me and before I could even bend to do this he shouted it again. I drew myself up to my full 5ft 3 ( nearly) inches and suggest he try “please” in the future and reminded him I wasn’t a dog (not that that would be an acceptable tone for a dog either, I know). I realised I was about to lose it so sat down in a chair and took deep breaths .I checked my watch and indeed it was wine o’clock so there was nothing else for it. So I am thinking of designing a t-shirt that says-“I haven’t been well you know” the purpose would be to alert all who try to push me over in the tube, get in front of me in the queue, bark at me in the airport, send me annoying emails etc etc that I may be small but I am on a short fuse! You have been warned!

I have also realised that some of my strength is returning and I am now committed to do our Perthshire Trek in September.( PUT YOUR FOOT DOWN TO BREAST CANCER Sept 10-11)  I would love to see you there if you want to do it with me. I will keep you posted on my progress and please do encourage me anyway you can-frankly I am going to need it but I think the challenge will help my confidence return-honest.

Tomorrow I have an appointment to see the breast care nurse. It’s the first time I have been at the hospital for few weeks and I guess its going to feel a bit strange. It will be good to talk over how I am and some thoughts I have had about any further surgery. It feels important to have this time and I feel so grateful to have the opportunity to do this. Breast care nurses and other specialist nurses play such an important part in supporting people not only after surgery but also in adjusting to life going forward. We need to ensure that in these days of budgetary constraints their valuable work is not lost.

So reasons to be cheerful are plentiful. Time with good friends at the wedding in such a wonderful setting was great.And seeing a young man you have seen grow up look so happy alongside his new wife was just wonderful. Also time with new friends in Windsor exploring how to be the best leader I can be was as ever inspiring and restoring too-a really special combination for me at this time especially. And time with the  team Breakthrough in London was just great.Our recent awards for fundraising campaigns and the new media award for our ibreastcheck app has been a super acknowledgment of the great work of a truly fab bunch of people from trustees, to all the teams across Breakthrough to our amazing volunteers. Its an honour to work alongside such passion, commitment and talent. Now as soon I have caught up with my sleep I will get those walking sandals on……honest.

Friday, 1 July 2011

Its OK to be not OK?

Yesterday was really amazing. In a store near Glasgow I met 38 of Marks and Spencer senior managers who were leaving to do the 5 peaks in 48 hours. Yes you got that right from the top of Scotland to the south of Ireland in two days climbing 5 mountains. And they are doing it still as I write this blog. ( Keep safe guys!) In the stores across the country they are supporting their target of a Million pounds raised for our pioneering research at Breakthrough Breast cancer and The Marie Keating Foundation in Ireland.
They set off yesterday with confidence, spirit and maybe a little trepidation but with a real sense that as a strong team they will achieve it. Impressive on so many levels and credit to themselves and their organisation. M&S has been integral part of Breakthrough’s success over many years-thank you for this and for continuing to see the importance of what we achieve for people affected by breast cancer. Do support them by contributing to all the staff activities at stores across the UK and Ireland this weekend if you can. It will save lives!

Watching these heroes ( and they are) I thought of some of the conversations  I have had in recent weeks with others affected by cancer and other conditions too. Often we hear the heroic stories that people have achieved fighting whilst coming to terms with their conditions and sometimes during challenging treatments and we are awed by them-and rightly so. They are channeling their own mountains to climb into helping others and hopefully helping themselves as well. But each of our challenges are so individual. I know I am building up again to walking to work but I am at a snails pace just now. I think of Jane Tomlinson who ran marathons with advanced breast cancer and I want to kick myself but that’s just not me. I know that for others writing this blog would be a major challenge for them in these circumstances, where as for me it helps and I enjoy putting these thoughts down-they are out of my head then. And lets face it I can do it without mussing up my hair (more of that later!).

So here’s to the every day heroes who do so well when they have made it into work when its not easy, who have got a meal on the table for the family, who have got out of bed every morning, who have climbed their own mountains whatever they are. And also remember sometimes the greatest courage is displayed when you are able to say I am not sure I can do this without support/more time off/half days at work etc. You are all my heroes too. I would say the wind beneath my wings but in spite of myself that song always makes me cry. And that’s something I am a bit prone to just now ( no change there I hear my family call!).

So reasons to be cheerful are those great people I met yesterday of course. I also had my hair dome and its looking great and almost making up for the cold sore on my face :-( But also I am going to a wedding on Saturday, which will be fabulous. It will mean time with special friends in the wonderful setting of Loch Lomond. Can’t wait and hope the sun shines on them all.