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Sunday, 11 September 2011

You tell me I'm going to die, and you'll only offer me palliative care!

One of the biggest challenges has been in realising and coming to terms with the fact that I am not going to die as soon as I thought I would. That I can still work and have a life, within some limitations. However they are only really limitations if you allow them limit your existence. I can't walk very well, and I'm not able to do many things that I once took completely for granted (who moved the floor so far away?) but I can manage.

There is a long list of things that I can't do, but they are also challenges to find a way around them.  The garden has got to the point where it is a total jungle, but I have recently found out that a neighbour is a professional gardener so I need to get around to contacting him about completely clearing my front garden so I just have a lawn out there.  At the moment there are trees growing in the lawn!

When you are told that you have six months, possibly a year to live it can make your life crash into a wall and scrunch up.  Everything from the past and the future is now squashed into this time frame and it is really had to know what to do, and where to start sorting things out.

In all honesty I can't say that I was very upset about the thought of dying.  I was upset about the thought of what a waste my life has been, and the worry that I was going to become a burden to others who wouldn't want to take on that burden; and if they didn't what would happen to me?  All very selfish, I know, but in many ways I have never thought that I really fitted in anywhere; that I have never belonged.

The impression I was left with by my oncologist at the time was that I was going to die of this, there was nothing that they were going to do to even try to make me better and that anything they did do would be purely paliative and to ease symptoms.  What?  You are not going to try anything?  You are expecting me just to die quietly in some corner somewhere, and without causing the NHS too much expense in time or money?  I know that I am worthless and useless already, but what a confirmation that was that I was just...nothing.  I was put on hormone therapy and told I wouldn't be given chemotherapy because it was "not appropriate at this time".  So there I am, on Tamoxifen (daily tablet) and zoledronic acid (Zometa) by I.V. every four weeks.  The latter is a bisphosphonate to strengthen my bones, which is where the cancer has spread to.  Maybe this will work, for now.

It was the thought of not even being given the chance to find something that would really work for me; that could give me a quantity and quality of life so that I could make some meaning of it all.  This was the one thing that not only upset me a great deal, but which spurred me on to find a way to help myself.

1 comment:

  1. Great writing, Vicki! Thrilled to know you have a blog.

    Shelli G aka tiaragurl