Cancer, internet and unexpected emotions

It’s been a rather odd past few days.  I am settling back into routine after my Chiang Mai adventure (and yes there are still more updates on that in the pipeline).  I am at that lovely place just after a fairly big check and therefore at my least anxious about my health.  However, I have been prompted to reflect (again) on how much our lives, and in particular our lives since cancer, are affected by the internet.

It is obvious that the internet and social networking can play a considerable role in the whole cancer experience.  It has played a huge part in my own experience, being fairly isolated and far from my roots and family. There is a wealth of information (and mis-information) available on the net ranging from Dr Google’s viral approach to providing information through to the focused and detailed information and discussions on Breast Cancer and other dedicated websites.  There is lively and passionate debate on issues connected with Breast Cancer, particularly around the Pink branding and lack of progress on cause, prevention and cure. This debate is clearly enriched through wider internet reach.  Naively I used to think I was an advocate for breast cancer until I began to engage with and follow the debates and discussions and now I realise that I am a junior when it comes to advocacy and understanding of the issues.  I also believe that in a sense, Cancer unites us, in providing a common enemy.  The internet enables us to garner that unity and use it constructively.  For me personally, social networking and this blog have played a massive role in my cancer experience and do so increasingly.

There’s nothing particularly new in any of that, so what has prompted my sudden standstill?  I’ll tell you what.  Relationships and emotional connection with people I have never met.  That is what has made me stop and think.  I have made “friends” with a number of people through the internet – particularly thanks to the blog and Facebook, and to a lesser extent Twitter.  Some of these friends I have come to know pretty well, even though we have never met either in person or spoken.  When one of my cyber friends was stolen by cancer last year, I found that it affected me enormously.  I did not even know her name, yet we had connected through our respective blogs and been quite close.  Her death was a great shock and I found that I was unprepared and ill equipped to handle it.

Last week I read the very powerful post by another blogging pal, the Carcinista,  where she shared and discussed her decision to stop treatment.  What an honest, emotional and inspirational post from an amazing woman.  The blogosphere, Facebookworld and twittersphere shared her post and we seemed to share a sense of admiration along with the deep sadness at the stage of her illness.  Yesterday, I came online to the news that she had died.  Another young, remarkable woman had been stolen by cancer from her family and friends.  It took me right back to the grief I had experienced last year, and from the prolific messages of condolence it was clear that I was far from alone.  Yet, again, this was someone I had never met, and in this instance we had hardly communicated directly.

It seems that the internet brings us a whole added dimension which I feel is outside my familiarity zone and for which I am not equipped.  That is the emotional attachment to online friends.  How can such strong emotions come from connections which are in one sense actually quite impersonal?  It really strikes me as powerful that I shed tears for someone yet I do not know their name.  I must stress that this is not in the way that a film or death of a famous person can prompt tears and grief, but a deep and real sense of personal loss.   I also wonder how it feels for the family and loved ones who receive outpourings and numerous messages of condolence from way outside the traditional sphere.

While I will never be glad that I was one of those who was dealt the cancer card, I am thankful that I was diagnosed at a time when the internet has brought this added facet to the experience.  And if I do not feel prepared to deal with the added emotional dimension, then I need to do something about that.  I reckon that acknowledgement and reflection of this is a good first step.  It might be a new and strange experience bringing unexpected emotions, but I am truly glad to embrace it.

I am really not sure if it is appropriate or not to dedicate a blog post.  In case it is,  I would like to dedicate this post to the special people I have connected with “thanks” to cancer and thanks to the internet, in particular those who have been taken by cancer.

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Rose coloured spectacles? Or the Breast Cancer Lens?

“Do you think of Breast Cancer every day?” was the question posed recently on a BC friend’s blog.

It was a very thought provoking question, and timely as it came at the start of my landmark days, the prominence in my mind as I approached my Cancerversary, and of course the prominence of pinkness of Breast Cancer Awareness Month.

My instant reaction was that it is not whether I think of breast cancer every day, but rather how often I think of breast cancer in a day.  I have no idea, but I know it is at the forefront of my mind probably too much.

It is a bit of a puzzle to work out what is a healthy level of reflection, and what amounts to unhealthy obsessing.  Of course, I believe that my own ramblings and rumination are healthy but I can also see that it is not a good thing to allow the cancer beast to dominate my mind quite so much.

I think that the reality is that it is not so much that I think specifically of Breast Cancer frequently.  It is moreover that I now see everything through a kind of Breast Cancer lens.  Along the lines of “same, same but different”, I am living in a different reality, (often termed the “new normal”) and everything looks different through this lens.  It affects everything you plan and try to do and means that much has to be modified.  As many of these changes become more a part of life, the act of modifying becomes more automatic but the changes are there and things are different.

For some things the lens is very obvious.  For example, I can’t think of the coming weeks without feeling the fear of the Big Check and having the inability of making any firm plans beyond that.  For other things, I do not specifically realise I am seeing things through the lens but it affects what I do, such as what I wear, making an extra effort to swim or join the Pilates class even when I am tired, choosing what I eat, adding a squeeze of lemon to almost every glass of water I drink and even arranging the pillows as I climb into bed.

In some ways, the lens is a good thing – perhaps a bit like a metaphorical medical kick in the backside!  It reminds me of the importance of lifestyle choices and the impact each one has.  It spurs action instead of inertia.  Sometimes it is a block, and prevents me from making decisions or plans.  It has an advocacy refractor and I find myself lobbying other women to make sure they screen and self examine.  And sometimes the lens has a very emotional character of sadness and nostalgia, when I think back on how life has changed, how much I took for granted and how much has changed for ever.

One thing is sure about this lens.  It is always there.  Once placed over my vision, it will never and can never be removed, even if I do not always sense its presence.  I need to try and use it to my advantage as far as possible and reduce its ability to distort my view and cause anxiety, disruption and regret.

I am sure I will continue to think regularly of Breast Cancer.  It is too significant to be able to imagine a time when it fades from deliberate thought.  I hope, though, that in time I will think less frequently of the immediate disease and focus more on a helpful and healthy use of the Breast Cancer lens.

As good a day as any for reflection

Sunday was a strange day with strange emotions.  It was my birthday, and brought with it a host of mixed feelings.

At any age, it is of course something to celebrate, but as the years advance it is also an important time to reflect.  This year more than ever.

My birthday last year was one of those big milestone ones and I found the lump a few weeks later.  I can’t help but connect the two events in my mind.  It is odd to think that so much has happened in the past year, and that I was blissfully unaware of the cancer present and growing when I was marking that milestone birthday last year.     

Looking back over the past year, particularly, is impossible without becoming emotional.  And the nature of cancer means that looking to the future is equally fraught with emotion through the uncertainty which a cancer diagnosis brings.

So the way I approached this birthday, was in keeping with the way I try to approach my relationship with the cancer beast.  By small actions which I have in my control, and which make me feel good.  So I rounded off the day in the pool, swimming one length for each of my years, which took me to a smidgen over a kilometre.  That can’t be bad for a girl who has been through the Triathlon from hell!