Facing the Future.....

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Cancer treatments and cancer itself tend to cause mood fluctuations, which isn't surprising.  Having blood tests and scans on a regular basis becomes tedious and to know that it's what the rest of your life will consist of and that your only real outings will be visits to Nuclear Imaging departments, the Cancer Centre and the Path Lab doesn't fill you with joy.  We all have days when we don't feel brave. That's when we need a friend who will let us say what we really feel occasionally, without giving us a lecture or trying to jolly us out of it.  Just listen, stifle the urge to find clever words; just sometimes let us say what it is we're hiding behind a brave face.

We wish we could still do the things we used to do, things that it seems everyone else is doing.  We could do some of them but the knowledge that we're taking an extreme risk, or even a small risk, of compromising our health further can stop us in our tracks, so we find ourselves not having those small goals or treats we all need to look forward to, those moments we all get excited about.  It makes life very bland and, if you've always been an adventurous type of person, it means life has a relentless sameness about it.

Sadness is inevitable at times, as reality seeps further into your consciousness, the reality that this is all there is; that it will never again be how it was before illness struck.  For me, the days of having the freedom to do as I wished are well behind me and from now on it's a matter of facing that and making sure I don't start feeling sorry for myself; to constantly continue to find ways to occupy my mind so that I can retain as much of my own personality, that uniqueness and individuality we al have, of which socialising with others is a necessary component.  That was easy when I was still in denial but it's much harder now that I'm living in this strange "half world", a world of trying to live as though I don't have the knowledge that there is a slight risk that Palbociclib, like all powerful cancer treatments, brings with it a higher risk of pulmonary embolism, strokes and heart attacks, or that it can fail, and more drugs, with more side effects could be needed.  And that, if all else fails and no new miracle drug is available, it will mean chemo and more chemo until chemo no longer works.  I don't want that kind of ending to a life lived with enthusiasm and energy.  Already I can feel my personality has changed from happy go lucky and bubbly to quieter and mostly wishing to lose myself in a book or writing project a lot of the time.

I'm very fortunate to have wonderful friends who visit and those visits are the high points of my life but there are many weeks when I have appointments which drain my energy and make it impossible to have visitors.

I've learnt to put any negativity out of my thoughts and live the best life I can, to somehow find the happy place I was in when I was unaware, or unready to face the reality of my situation.  That was a good place to be in for a while, but it wasn't real.

The biggest obstacle is that I can do so much less than I used to and that I need so much help.  An important thing for people to know is that the treatment I (and other cancer patients) am on lowers all of the areas in my blood count that contribute to a sense of well-being, so the effect of it is not only physical, but also mental and emotional.

Just a tip for those who might be wondering how they can help a friend or loved one:  friends can help so much in this vital area by keeping in touch and letting us know they haven't forgotten us because, with the loss of a sense of well-being comes a loss of self confidence.  This is a tip for those who know someone with any type of chronic illness, not only breast cancer.  To know that we are still a part of our friends' lives is crucial.  Don't leave us out because you're afraid you might tire us or because you think you shouldn't bother us with your problems.  Give us the choice of letting you know whether we're up to it and let us decide.

I'm sorry that this isn't a happier blog post!  The content does read as a sad story but I decided at the outset that this blog would be an honest one, showing all the ups and downs as I grapple with a way of life that's been thrown at me.  Most days I'm happy and upbeat but, as with all of the challenges we all face in life, it has two sides to it and this is the other side.

Just an aside, to date there has been no news as to whether the manufacturers of Palbociclib and the Australian Government have reached agreement on a price for Palbociclib on the Pharmaceutical Benefits Scheme so women continue to wait.    ~