Tamoxifen tales.....

It was August 1999 when I finished my five year course of tamoxifen. There were a few tablets left in the box so I smashed them up with relish much to my kids alarm. That's me reclaiming my life I thought. So in 2011 when it was offered to me again ,after a diagnosis again of early stage disease, I declined...politely.

It may seem a paradox as perhaps one if the reasons I'm still here so many years later is because of tamoxifen. But also having taken it for 5 years I know the side effects. I gained weight, I felt overwhelming fatigue at times , I burned up when I least expected it, I felt flattened by it. I even had to have an ovary removed because of an ovarian cyst, another increased risk with tamoxifen. But I also knew the benefits of taking it having researched it thoroughly and what mattered to me was to be there to see my children grow up. So I  dutifully took it for five years.

Last year when more research was published saying that there may be benefits in prolonged courses I revisited my recent decision with my surgeon. Perhaps I'm being reckless with my life, I said. I also explained I  had made the decision to work independently, setting up on my own. Could I do this while also taking a drug that I knew would cause such ill effects? We discussed it at length. He told me that there may be more known in time about whether reduced doses could have as beneficial effects, also about regimes that are different for example where you have a month off to kick start the effects of the drug as we know sometimes it stops being effective. He told me I could change my mind at any stage and would still benefit from it. I left reassured that I had made the right decision for me at this time. That what matters to me just now is that I have quality of life.

So it won't surprise you to hear that the recent research published saying that around 400 more lives a year are lost as a result of people not taking the full course of tamoxifen has made me revisit it.

But I haven't changed my mind. You see it's my choice and I have made it from a position of knowledge. My thoughts are with the many women who having heard the news feel guilty or fearful. Perhaps unlike me they haven't made an informed decision, they stopped taking tamoxifen because of side-effects that went unreported. They hadn't fully understood the risk they were taking and no one had asked them how they were getting on. Perhaps they were embarrassed to admit the side effects or had not had them taken seriously. I do know that not once in the five years I took the drug was I ever asked about how I was doing on it at my review.

Was I surprised by the research? No. Was I dismayed by the tone of the statements. Yes. They came from a medical centred perspective, not a person centred one. The implication almost that no one has the right to make a decision to stop a drug for cancer. The dutiful patient adheres to their treatment whatever it's impact.

So here are some thoughts from me  for professionals on how to do this differently:

Discuss the benefits and potential side effects with the women or men before prescribing and ask what matters most to them to enable an informed, person centred decision.

At follow up ask how they are and what would help and enable that to happen.

Be flexible and listen to what they say.

Support people to make the decision that's right for them.

Remember quality of life should not be totally sacrificed for quantity of life and that ultimately it's the individuals decision to make that informed choice. It's the role of the team involved to enable that.

And for the researchers, let's redouble efforts to create therapies that improve both quality and quality of life. We are in uncharted waters where people are surviving cancers for much longer and so future treatments need to enable that survival from a well-being perspective too.

And for the people diagnosed with breast cancer and  on tamoxifen do ask for help if you are struggling and need to control some side effects. Don't be afraid to ask questions and get the information you need to make informed decisions.

Reasons to be grateful.

Believe me when I say I am so grateful to still be here so many years after my first diagnosis and give thanks daily to all those who made that possible. But please don't judge me if I decide to do things a differently now. I may of course need to review that decision and some may have reason to question my decision in the future. But at least you will know it was my choice, made with knowledge and that's a good outcome too.

Just dont call it pink and fluffy!

Maybe its because I have most recently inhabited the breast cancer charity world ,when I hear the phrase pink and fluffy ,I come out in a rash-and not a pink and fluffy one either. Dressing any cancer diagnosis in pink does not mean it’s any less difficult to deal with and can hide the challenging reality. And so it is that when people talk about working with compassion, with integrity, with honesty and with respect as pink and fluffy,they seek to diminish its importance too. Somehow it’s not the real work, whereas spreadsheets, manifestos and business plans are seen as the tougher side of being in the real world of making things happen. But don't we all really know that what makes them stand or fall is based on relationships? It's the people stuff that is the factor that guarantees success or not, in business, in services, in life.

Bring this into the field of health and social care and notice that where there are "failing" organisations, there are people who aren't listening to each other, there are managers who have disconnected from their teams, there are people who have focused on only targets and not on the real outcome ; the experience of those receiving care and support.

And how pink and fluffy is it really to commit to listen to others, to be in respectful relationships, to bring empathy rather than judgement to our dealings with others, to act with integrity in all our work? Who of us can say we have always got it right (not me I admit), who hasn't had to learn the hard way sometimes, who hasn't felt the impact of others not working in this way? I know the lessons that I have been learned from such experiences have been the tough, life changing ones. And definitely not pink and fluffy.

It's hard not to think in terms of war analogies when we are in such a time as now, when parliaments and senates are seeking approval to strike targets in Syria. So is there also a risk that rather than looking for the longer term goals of culture change we deploy some "targeted" cruise missiles ; we bring in some new regulations, we find some individuals to blame and we change little really. I heard the quote in parliament that "appeasement never achieves peace" but does war? What achieves change in the long run is deep listening and honest, respectful, empathic, flexible communications and actions shaped by the very people who matter.

If we want to achieve real change whether that's in health and social care, our wider communities or our nations it's the people stuff that will lead us there ultimately. Let's be man enough to embrace it and stop belittling it as pink and fluffy or I just might have to resort to even more antihistamines......

Reasons to be heartful. I see a real willingness to engage in those discussions about how to change things for the better. Even in the debate on Syria the division is not about whether we all care about the awful reality in that devastated land, it’s about how best to help. I truly hope we find the right answers soon.

The fireworks tonight in Edinburgh herald the end of the festival and in some ways the end of summer. I hope the weather holds out to allow both to go out in style. I leave you with a photo of the war horse in front of Edinburgh castle. Beautiful and strangely moving in the majesty of the creation and the setting.

 

The best way to find yourself?

“The best way to find yourself is to lose yourself in the service of others.”

Mohandas Ganghi

So many images were conjured up  for me this week I saw another piece of research about the benefits of volunteering and it made me reflect on my own experience of volunteering at different stages in my life. I have volunteered as a carer in hospital before I started my training, I have fundraised, I have volunteered as a safe-guarder for my church at that time, I have chaired playgroups and taken my turn at looking after the kids, I have been on school boards, I have supported family weekends for people with diabetes, I have given talks about health related things mainly and so on. But mostly now I’m asked to be a trustee for charities.

I suspect it’s a reflection of my cake making abilities. I will never be a food blogger. Now I’m sure it wasn’t my particular amateurish chocolate crispy cakes that were banned from the local fundraising group for Childline coffee mornings but I have long harboured suspicions it might have been. There was also the issue that as a local diabetes nurse in the practice at one stage, I was not good for profits when I was put in charge of selling the cakes at the coffee mornings. Move me to the books I cried, prospective buyers who know me ,see me there and put down the cakes with an apologetic smile. In spite of all of that I loved those days when I felt part of the community, focused on helping others in however small away and however tired we were by the end of the day we left with a smile and friendships deepened.

It was also a bit of a family joke that if I went along to an AGM of whatever group I was part of there was a risk I would end up as Chair. I can’t ever remember thinking this was my goal, mostly what  I knew was I wouldn’t want to be treasurer! I don’t doubt that those days of chairing playgroups etc helped me deal with any challenging situations as a leader. Fairness, clarity, focus on your mission and what’s important, listen and respond to all viewpoints and don’t take it personally (still hard I confess) were some of the things I learned. And seeing the outcome of your volunteering is so satisfying: the kids playing in the playgroup, secured for another year through your work; the families at the end of a weekend confidence boosted and friendships made to make life with diabetes a little easier in the future; a charity secure and meeting the people whose lives it has changed.

Yes volunteering has given me some of the greatest satisfaction over the years-and OK maybe the odd headache too but if you want to change your life and others too…go on give it a go. Think about what your good at and what makes your heart sing and find out what is needed and match the two. You won’t regret it I suspect and you will change someone’s life for the better too.

Reasons to be grateful:

I had a lovely lovely time with my daughter, the spa day was wonderful . She is home now with her family (see photo)to welcome her back. Today I’m off to the Festival of Politics at the Scottish Parliament. I guess it’s not everyone’s idea of fun but saddo that I am it is mine…honest! The Fringe finishes soon which perhaps is just as well my stamina and wallet are stretched by now. But we have seen some great things, including a young comedian from New York called Michael Che-one to watch I think. Brilliant!

Both Sides Now?

August is flying past with special family times and memorable experiences and inspiration from so many places. We have seen pregnant (maybe?) pandas, we have laughed and blushed at risqué comedies (they were supposed to be 12 and over!), we have been wowed by innovative theatre and mime, puppets have shocked and charmed us; singers, dancers and pipe bands have given us goosebumps and Edinburgh has been the beautiful and buzzing backdrop to it all. I have loved it all so far.

And on occasion it has made me think. The play of Anne Frank’s diary performed in the open air was no exception. The setting a garden of an old church and with the rain drizzling down, the actors told their story. Wrapped in warm clothes we watched engrossed as their drama unfolded. Still part of me hoping for a different ending, struck once again by the horror, sadness and impossibility of their plight. Such an intimate situation made me feel the guilt of not being able to help them. I wasn’t alone wiping away tears and rain from my face at the end.

The Man Who Planted Trees was told by puppeteers. They told us of how one man had changed the experience of many,  many people by planting a forest of trees himself. He transformed a barren part of the south of France into a lushly forested area. The dog puppet completely stole the show and made us laugh as we absorbed the powerful message of how just one man could make the world better for so many. A hugely important message for all of us gathered, young and old.

Unexpectedly a song by an a Cappella group also caught me. It was one of my favourites: Both Sides Now. Their version was simply beautiful and made me see the words afresh. All of the refection I have done in recent times came to me in that phrase “I really don’t know life at all”. Somehow its always seems to be at the time I have it all sussed that it all shifts on a sixpence. Here is Joni’s souful version of recent years , I love it and maybe there is a comfort in that message?

Reasons to be grateful. I had such a good time with the girls and now am looking forward to my daughter arriving for a few days. A spa day awaits! I leave you with the wonderful backdrop of Edinburgh castle lit up during the tattoo.

Affirming life....

It's August in Edinburgh. Cue crowds from all over the world, pockets full of flyers, crowded pavements and strangely attired performers. The festival season brings laughter, music, theatre, poetry and discussion to every venue all over the town. There is everything from grand venues hosting fine classical pieces to church halls with local theatre groups performing their hearts out. The streets are full of theatre and laughter, much to the chagrin of drivers around the city. There's even free shows for those with limited budgets but keen to feel part of the madness that is the fringe!

What amazes me is the talent and courage of all those involved. Yes careers are launched at the Edinburgh festival and fringe but for many it will not be their career, simply a way to explore their creativity, their talent and have experiences they will remember forever. I so admire them. In these times when people will work into their seventies, then having the things in their lives that balance work or that allow their talents to flourish within work will be ever more important. It's what builds resilience, helps engagement, fosters joy...we all need that.

It's not the only thing this week that has made me think of how much untapped potential their is out there. I saw this film of  the Landfilharmonic orchestra. its wonderful in its creativity and hopeful message. 

You can't fail to be moved by the story and how this chance to make music has lifted their lives, has shown them what they can do, has tapped into their potential. The message that stays with me is that we often hear messages about thinking more before we throw away waste but its even more important that we don't throw away people. Absolutely.

I would really like to live in a society where we think about how we can realise people's potential more, whether they are coping with things like illness or disability or if its about other kinds of challenges like poverty that affect all life choices. The message from this wonderful film and so many of the performances across Edinburgh this month, we all have so much to offer and if we get the chance it's not only life affirming, it's life changing.  

Reasons to be grateful.

 One of our friends died this week. He bravely dealt with three separate cancers in his life time. Even through that time he never lost sight of what mattered to him, his family, his friends, his community, his faith. All of us who knew him will remember his enthusiasm for life and be grateful that his passing was peaceful. I hope his family gain comfort knowing he will be missed and that he was loved.

Yet another reminder for me of how fortunate I have been by comparison and so I  will savour some wonderful family time ahead this week. My beautiful step-granddaughters are visiting for their first ever Edinburgh festival. We have lots planned and I am so looking forward to it. 

And the lovely Cara was one this week .Here she is in her Sunday collar!