Saturday, 30 June 2012

Seize the day?

I started the week in London, visited Glasgow twice and now I'm back in Edinburgh.Phew! I am feeling quite relieved my stamina has held up. It's not all been easy and I am done each evening, tearfully tired would be the expression that comes to mind, but I recover. There's been a laughter filled evening with family and friends and touching moments between my mother and my daughter, the precious times in life in one week, no less.

Our One Day campaign continues to gain attention, with Stephen Fry tweeting about it. The twitterati indeed! And at the end of the week we had an great photo call at Hampden ( national football stadium , don't you know) launching a partnership with Scottish Women's Football. Nicola Sturgeon the Cabinet Secretary for Health and Wellbeing loaned us her support, knowing such partnerships are great ways to get messages out about detecting cancer early. We were both awed by the young footballer who joined us. She looked fab with magenta coloured hair and wowed us with her talent with a football. Stand back guys, the women are gaining ground! Not sure I could pull of the hair colour but I admit to being tempted.... And look out for the first Deputy First Minister with pink hair maybe? The partnership is to raise awareness of how to be breast aware ( our TLC campaign see for details ) and promote knowledge of the risk factors for breast cancer too.

Physical activity is an important part of reducing the risk of breast cancer so anything that gets more women out taking exercise is potentially life saving. Its something I too want to get back to. The last year when I have been less well and therefore less active I have shall we say become more cuddly! I remember years ago reading the column of a young journalist dying of breast cancer. Her talented writing and very black humour made me laugh ....and cry. One of her quotes has stayed with me, "it's not over till the fat lady's thin". Brilliant black humour and also acknowledging a painful irony that many fellow travellers will recognise. Cancer doesn't generally deliver better cheek bones but more often the  treatments and the impact leave us feeling overweight, with yet another unwelcome impact on the self esteem.

But there are worse things for me than this and this week was yet another reminder of that for us. A friend of ours has been diagnosed with cancer again and this time it's inoperable. It's devastating for them all. Plans for a recent retirement anticipated and now dashed. I went to tell someone I know and found a fountain of emotion emerging from somewhere very deep. It's hard to put it into words, even as I write. But one thing I did express was my wondering how long I will "get away with it". It tells me I can take nothing for granted. And maybe that's a reality check I needed. So this weeks message for me and mine is seize the day. And be alongside those who aren't so lucky, if you can, it will make a difference for them.

Reasons to be thankful. I survived and enjoyed this last week and feel more like Audrey! Our holiday, which includes time with the family in Bulgaria in our little piece of paradise is less than a month away. If you say that quickly it sounds soon:-) And we are making plans to get a dog, oh yes, but say nothing to Koshka please!

Saturday, 23 June 2012

"Strumming my pain with his fingers?"

"For most people going back to work is a welcome distraction....the thing is its not for you", the words of my doctor when I saw her last week. So we then talked about how I could look after myself, given the complexity of my situation. Pace myself, knowing when I may be vulnerable and stepping back and so on. Well rehearsed plans to put into place. And in many ways it has been a great distraction. Anyone who visits our office recognises its bright welcoming dynamic and the warmth and friendliness of the team. It's great being there. We have laughed too.......not least during the discussion about the new Irn Bru ad. I really can't repeat it ( no really i cant!) but suffice to say it made  me laugh so much I coughed and wheezed! Great therapy. 

 And it's been in many ways a hugely successful week in which a new Breakthrough Breast Cancer campaign we launched received great plaudits , capturing the hearts and minds of not only supporters but leading peers in other charities. Fantastic affirmation to a hard working and creative team and  wonderful supporters too. The short film thats part of our "One Day" campaign is so good at getting the message over. Yes it's so good it's one I need to watch in private really. 

As I have thought of this and my doctors words of how to protect myself, a song has come to mind a few times. Its a song written about Don Maclean by a songwriter called Lori Leiberman. The sound track of my youth was the Roberta Flack one. Do you know what it is yet?! I hesitate to say the title, as it feels too strong but some of the lyrics really do resonate. Perhaps the line " I felt he found my letters and read each one out loud" and if I am really honest so does "strumming my pain with his fingers". It's those core fears as someone described it to me recently. The quote " being there for the key milestones in your children's life "  is my undoing each viewing of the film. Here is  the link to "Killing me softly " story. It's worth a look and maybe helps explain the link for me at least. 

But back to the Breakthrough "One Day" campaign. The power of that film is such that I keep thinking about how we can use it as it tells the power of our work so well. And of course on these occasions I will stand up there introducing it and see the impact .......and try to contain my own. I took part in the filming when I was off recovering from surgery and as I approached it , struggled with the dilemma of which hat I was wearing. But the truth is its all the hats....I need my own special hat designer for this job really.  There isn't a template on how to do this and in the last year I have been doing my best to walk the line of balance but it's not easy. So has my return to work been a welcome distraction? Absolutely! Have a been able to protect myself.....mmmm jury's out. Here's the link again to the one day film and how to choose your one day, if you would like to? Mine is Sept 1, and I am proud of that. 

Reasons to be cheerful. Heading to London on Monday so I will see my colleagues based there too and I am really looking forward to that. My daughter is on a flying visit soon. We have booked a meal together with friends at a vegan friendly Vietnamese restaurant that should be fun! Having visited Vietnam we know the beauty of the country and eclectic variety of food...and great coffee too. Can't wait, good times with people I love.

Tuesday, 19 June 2012

One Day?

Hi ho, hi ho.......yes it's official, back to work on Wednesday. So I am, no ....delighted! Oh well maybe a bit of both if honest. So I have been doing a bit of preparation in anticipation of returning to work. Given the "summer" weather i have been in search of a raincoat and successfully chose one that matches the new sandals.....a Scottish summer outfit! But honestly I have been thinking about other things other than haircuts and outfits.

I have also been thinking about the campaigns we are going to be working on shortly.  In particular our "One Day" campaign is at the forefront of my mind. We are asking our supporters to choose a day that is significant to them and to support our work by raising the money to fund the research unit for one day, a significant sum of £2,200.

Yes that's a challenge but we know that many people hold a day that's so significant to them , maybe a birthday of someone special, an anniversary of treatment finishing, a day they were diagnosed; and they relate to being able to commemorating it in this way.

So the question for me is, what would be my one day? With breast cancer playing a significant role in my life for almost 18 years which day would stand out? When I was diagnosed initially it more of a process than a day, with a slowly dawning acceptance of the diagnosis. I can't put a date to it....just an emerging, growing fear over a very scary summer. The end of my active treatment was followed shortly by the death of my father. To be honest that is not a time I want to recall. It was such a sad time that the relief of finishing radiotherapy  was overshadowed by grief and also a fear that my own future lay the same way. There is the date I finished tamoxifen. Perhaps not a stand out day but certainly one I met with glee. The remaining tablets were smashed by a rolling pin and thrown into the bin with relish. Yes a small celebration but it did feel good to be free of its side effects and to enjoy the significance of the five year survival.

Another date that stands out for me was the death of my friend who had supported me after my first diagnosis, she herself having travelled the same journey with breast cancer a couple of years before me, also just in her 30s. My daughter in her teens by then was first to hear that she had gone on to develop lung cancer and understanding how upset I would be, even tried to protect me from that information initially.  I remember vividly the shock, the sadness, the fear for her and her family. And when she died it was devastating .... I remember that day well.

And I could go on as there are many more dates when breast cancer has impacted on my life, but you get my drift , these dates aren't ones I want to commemorate. But the one that is , is the day I first started working at Breakthrough Breast Cancer. Sept 1st 2008. That day I came into post and set up the organisation in Scotland. It allowed me to use my professional experience to date to set up an organisation I admired greatly in my own country.; a fantastic and exciting challenge. And perhaps equally importantly for me it's the day I was able to change all of the impact breast cancer has had on my life and my families life too, to a huge positive. To work with the great team I am part of to campaign for prevention, earlier diagnosis ,improved care and treatment and support the first and only dedicated breast cancer research unit here in Scotland is an honour for me and hugely important for our community.

And it's that that keeps me going with my latest diagnosis ( Easter 2011). I guess breast cancer will always play a significant role in my life, I am accepting that now and also that is maybe not finished either. But Sept 1st 2008 was the day I was able to fight back and believe me I haven't finished with that fight yet! A fellow breast cancer blogger shared the Emile Zola quote " if you asked me what I came in this world to do, I will tell you ; I came to live out loud". Oh yes, I love that quote.

Reasons to be cheerful. We have great supporters and also we hope this new campaign will attract more people keen to support and champion the great work we do. We can't do our work without that support so please share this campaign. I would love to hear about your One Day too.And if you can at all please  do think about your "day" and join with us in the campaign to support our life saving work at Breakthrough Breast Cancer. I know I will be. My real hope is that "one day" I will be out of a that would be the best day to celebrate , the day that no-one dies before their time and the future is free from the fear of breast cancer.For more information and how to sign up your own day, look at the website on. 

Thursday, 14 June 2012

Good people , good support ,new sandals and a hair cut!

There are lots of paradoxes in this cancer game I keep finding. One of them is just when you are feeling fine is the point you are reminded you aren't! And there is a paradox too that when you most need to quiet the mind, it's hardest to do it. Recently I have found it harder again to meditate and to sleep. Looking back to last year I realise I thought because the cancer was found early and I kind of know the drill , I could therefore pick and choose the impact . Wrong! And what's more having a recurrence isn't the same impact of a first diagnosis. I am slowly accepting that.  There is no doubt though, that having this time to recover from surgery has helped me do some of the emotional trauma recovery as well as the physical one too, its just that its not a smooth line, there are bumps along the way. It's a reminder again of the importance of support not just during treatment but afterwards too, often when you least expect it. Its so important to ask for support, its not admitting failure , it's an important part of your treatment. Support  to recover both physically and mentally should be built into care for all,  not just available to lucky people like me who are fortunate enough to live near a Maggie's centre or similar.  So as I prepare to return to work I am working on ensuring I listen to and look after myself. Although I am much more robust , I still haven't tackled a supermarket shop myself or driven any distance or even read a good novel; tiredness and concentration being still an issue. And a recent visit to the dentist had me in tears as did a visit to a massage therapist. No not the lets play some whale music and help you relax type of massage....more the lets beat you up and get those muscles released variety. Why didn't I opt for some aromatherapy?! Lost cause,i fear! Last year I contemplated a t-shirt that read "I haven't been well you know" to warn people. But this year it might say instead: "I am a bit wobbly by the way" My colleagues have really helped with their approach. I have been kept up to date enough to feel like a valued member of the team but not burdened by it. So much so that when I chose to go along to an art auction this week and got the chance to speak, I felt able to do that. I felt like I hadn't been away and really enjoyed the evening. It's helped me feel positive about going back soon. I am so grateful to them for finely judged information and support, done with compassion. They are awesome! Reasons to be cheerful. Well my great colleagues of course. And  I have just had a much needed hair cut. So I am feeling rather more presentable. New pink sandals helped seal the deal too! Best of all I have embraced my lady wot lunches and relished time with friends. Family vists to look forward to this weekend as well. I see the GP on  Monday to hopefully get a final return to work plan. Fingers crossed!

Friday, 8 June 2012

What do the Queen and Kylie have in common?

I found myself thinking about two women and their lives this week. One was the Queen....well how could you not if you turned on the TV in the UK ? The other one was Kylie, seeing her in the concert as part of the Jubilee celebrations. I have to say the Queen had the same look on her face that my Mum would have listening to the concert and twitter entertained me hugely during the event. So I will say no more on the concert other than, Tom you rock! And London looked wonderful..... So why the Queen and Kylie ? Any 86 year old who coped with that schedule and has handled their role for 60 years gains  my respect. And note the contrast to how older women are seen in our society and particularly our media, hidden away, patronised, ignored. Why is this? Its not the same for older men. The changes we have seen in her time as Monarch are huge but the progress in equality for women is  so much slower. What about breast cancer in those 60 years? Well the incidence has increased year on year but thankfully so has survival . And the treatment is very different now. From dreadfully disfiguring radical mastectomies and cancer wards with echoes of the book by Solzhenitsyn, to situations where breast conservation is common and if  mastectomy is needed reconstructive surgery can often offer some kind of compensation. We also see women diagnosed with secondary breast cancer live many years with a quality of life worth fighting for. BUT every cancer diagnosis has an impact both physical and emotional so that increasing incidence means we cannot rest in our work. Particularly it highlights the importance of prevention research like the Breakthrough Generations Study.We must understand more about the causes and risk factors to stop this disease affecting so many more people. The other change is that when the Queen was younger breast cancer was something no one  spoke about. When women were asked , is there a family history, they rarely knew because the diagnosis carried such stigma and let's face it ,visceral fear. That has changed for the better, brave women in the media ,and out of it ,have opened up and told their stories to help others. But we also know that in spite of greater awareness of the condition , that doesnt mean better knowledge of signs and symptoms and people do still present late for complex reasons. So having people like Kylie, with such a huge public profile be open about her own breast cancer , does help others come forward too. Not only that she has had breast cancer but that she has come out the other side of that, looking great and back to what she does best. It takes courage to go back to work after a breast cancer diagnosis. Your confidence is shaken, your sense of self has shifted, your wellness is diminished. How much worse is that if you have a public role and a media who judge on appearances constantly? So seeing Kylie strut her stuff signals to so many that there is life after this and it does get better. A great message for women living with breast cancer.  So resilience and courage are the qualities I see in them both and many many others too. It's what we do under pressure, we knuckle down and get through it. We look after our families, we return to work, we just get on with it. And let's face it without the support that the aforementioned will take for granted. That kind of resilience and courage is what keeps  so many going in tough times. I wonder if indeed its those behaviours that stifle change, because in the main women just get through and ask for little. And I too am getting through....and through less hankies the week! I spoke with a friend who has a family member being treated for cancer who, like me, fills with tears whenever it's time to say goodbye. Ah yes saying goodbye, that's the fear...... But I need to remember........Reasons to be cheerful. We have had a wonderful week with my step granddaughter. We loved the pandas and Oliver and although I have had to seriously pace myself, it's been great. Here's to the next time:-) I am engaging with my inner "Lady wot lunches"next week before i head back to work and catching up with friends who have been so neglected this last year. Have a good weekend all. 

Saturday, 2 June 2012

The gift of time and love in all it's forms.

The reason today was looming it was the day I made the decision with my GP on when to return to work. I started the week thinking maybe an additional week would clinch it for me. But my trip to see my daughter in Ireland taught me that may be a bit early. I loved our time with her. We discovered beautiful beaches to walk her dogs. I even walked barefoot in the sand and sea, collecting shells and laughing at the dogs antics. But each walk knocked me sideways. Sleeping flat out in the car as soon as we drove home again. Maybe what most illustrated my fragility was how upset I was to leave her. The tears still ever present as I write. So I have two more weeks off and that sounds right, I am confident  it's the time I need to be fully strong. I think maybe this time off, convalescing, has connected me to the impact of this my second diagnosis of breast cancer. Until now I have been busy saying this won't kill me, it's early, I can do this,  but giving little space to the emotional or indeed physical impact. After my last diagnosis the legacy for sometime was a fear of not being there for my children. It's not surprising really given that i had my treatment as my father was dying of cancer. I guess this will always be my fear so time with them is the most precious thing. Not only does a visit to her mean the beauty of Ireland and the excitement of Dublin but also she works with the charity the Dogs Trust who rehome dogs so we get to visit the dogs. They have all shapes and sizes of dogs from giant St Bernard's, Akita crossbreeds to gentle Staffies and beautiful Fox terrier crosses. It's my idea of heaven. She loaned me a book about women and the dogs who love them and it made me reflect on our own lovely Golden retriever who we got as a pup. He came to us the year after I had cancer the first time. And I would say he brought back laughter into our house, it was a turning point for me. He brought chaos for a time as a pup too, presenting underwear to unsuspecting visitors at the door, being dominated by our cat, having crazy gallops around the garden, thinking he was one of the children and joining in on their games or stealing space in the paddling pool. He was a boy so on one occasion he also tried to hump the Church Minister, something I don't think I  ever lived down! But most of all I remember the love and laughter he brought, somehow that soft gentle head on your lap could make everything feel OK. And we had many wonderful walks all together. Indeed when he died we scattered his ashes in Loch Lomond his favourite place in all the world. So dog therapy is my recommendation this week. If you have the space in your home, your life and most of all your heart and are able to give  the commitment to a dog you won't regret it. And a rehoming centre will match you up with the right dog for you and your situation. If we hadn't flown I had a short list drawn up! Ahhhh maybe next time? Reasons to be cheerful are much needed and it's the jubilee weekend so we have my step granddaughter visiting for the first time on her own. We have all sorts of nice things planned including a trip to see the pandas and also to see the musical "Oliver". Her own Grandma died of breast cancer a few years ago again that reminder ( as if we need it) of the importance of time with those we love. I hope this weekend offers you that too, treasure it, I know I will.