Monday, 27 January 2014

Why blog?

The recent controversy generated by the criticism by the Kellers of Lisa Adams and her use of social media has led me to pose myself the question "Why blog?".

Now this is a question to which there are a myriad of answers and those answers will vary from one person to another.  I can only answer for myself but I suspect that for many of us the answers fall into two streams; why we ourselves blog and why we are pleased that others do. Fo myself, both strands are part of an over-arching answer that includes belonging to a diverse online community.

As I have previously written, I have always used journalling when I have been facing challenges and changes in my life.  It is a process that helps me to clarify my thoughts, consider my options and choose my way forward.  Blogging is an offshoot of this process. I still journal, so why do I blog?

In part, this (somewhat sporadic!) blog is a place to share my thoughts and see what, if anything, this sparks off in other people.  That sits nicely with the clarifying and considering aspect of my journal.  Then there is that online community I mentioned above, sharing ideas, ideals and information.  And while my motivation is not altruistic, if anyone finds something I have written useful, then that is an added bonus.  Certainly I find that I learn from what other people have written.  Sometimes I find that in someone else's posts and comments a new light is thrown onto an issue I've been considering, at other times it is good to know others feel the same way I do.

What this blog is not, is a place for me to share my innermost thoughts.  That remains the function of my journal and I can't see that changing in the immediate future. It isn't in my nature to be public with things I consider to be highly personal and if I've important news to share (be that positive or negative) I am unlikely to share it here before I've told my nearest and dearest.

That doesn't mean that I don't think others should use blogging, or any other form of social media, in that way.  It is simply that it isn't for me.  Which brings me back to this diverse and generally supportive community to which we all belong. After all, if any of us don't like reading something, we can always stop reading ...

Saturday, 4 January 2014

New Year Thoughts

Happy New Year!

I have been meaning to post since before Christmas but all the busyness of the season ran away with me and the days slipped past.

On top of which, I had my annual check-up just before Christmas.  While I'm pleased to say that I am still in the happy position of there being No Evidence of Disease, I am feeling a bit ambivalent about the way it went.

It started really well, with the registrar who gave me the results of the mammograms the moment that the consulting room door was shut, saying that she didn't want me to worry a moment longer than necessary. This was Year 5 so I was expecting, provided that all was well, to be discharged back into the National Screening Programme and told 'goodbye, good luck, we hope not to see you again but you know where we are if you need us'; and I was excited and really looking forward to that moment. Partly this was because I could view it as a significant step and partly because I could do without the stress of imaging appointments, then a two week wait and the rest of the check-up just before Christmas. But no; I was told that hospital based follow-up would continue with annual mammograms and clinic appointments for 10 years. I'd even checked during the 'grope and poke' that I knew how to do an effective self-examination as I thought this would be a good chance to get my technique checked by someone who really knew what they were doing!

Now, I know full well that in real terms of recurrence the 5 year mark is not particularly significant, but then, especially with ER positive breast cancer, the risk of recurrence continues indefinitely. However I know too that studies show that follow up is actually not a particularly good way of detecting recurrence and gives no survival advantage, while the 5 year period usual in the UK (provided that there are no additional risk factors or ongoing complications) is a compromise as it is thought that women find clinic visits reassuring and this balances out the stresses it can cause. Based on that evidence, many breast units are now moving away from hospital based follow up (but with ongoing open access to the unit) after much less than 5 years for those people with no additional complicating factors, while continuing with the annual mammograms for 5 years or until the woman joins the Screening Programme.

I did raise the issue of continued endocrine therapy for another 2 to 5 years.  I had two years of tamoxifen and then switched to exemestane. Following the recent trials results the standard for tamoxifen is now 10 years and while there are no 10 year trials for the aromatase inhibitors, a discussion seemed in order. However, my oncologist wasn't in the clinic and it was clear that they were not expecting anyone to raise this (which I found slightly troubling!). They agreed to write him a Letter so that we could discuss this.

I found myself leaving the clinic unsettled and bitterly disappointed in spite of the initial elation of being told that the mammograms showed no changes from last year's ones.  The bitter disappointment has abated somewhat but I'm still unsettled about the fact that they are thinking that I should have a further 5 years of something that has been shown not to be efficacious, while not even discussing 2 to 5 years of something that could well be so.

Hence the ambivalence...