On the edge of the abyss

Ever since I found out that I can’t be cured, I have always been scared that when I have one of my episodes where i fall into  a really dark place, I won’t be able to crawl out of it.  That mindfulness will fail me, that the fear of the future will flood in so strongly that I won’t be able to find my way back to the present, which is the only safe place for me to live.

I’m falling….losing my hope.   Bad news never really felled me before, but I am struggling to get over yesterday. The chemo ward refused to give me my cancer markers, saying I had to get them from my oncologist, but I looked at them sneakily, and immediately freaked out, seeing that they both numbered in the 200’s, as they had when we did the baseline markers before I started chemo.  They got on the duty doctor to come and see me, and he said that there was no great cause for concern yet, that one marker was slight up, but the other was slightly down.   I know all the rational things.   That I have only had two cycles, that the bloods might take a while to take a hit, that I am having only a half dose of the most heavy hitting drug in the regime because it is getting too toxic for me at full strength.  But I’ve slugged those markers before, kicked them out of the park after each chemo session.  I am discouraged by this, and I know my oncologist will be also.  He has spoken before of the clinical picture starting to turn against me, that  the cancer appears more aggressive.  I have a scan next week, and that may be more telling, one way or another of how we go forward, but I feel my hope of being on maintenance chemo at any stage, on this regime of drugs, slipping away. I know markers can be unreliable, but mine have always been very true to what is going on with my cancer.

There has been an image that has haunted me since I was diagnosed, but after a few weeks I learned not to let it in.  It’s me, in hospice, as I want my family to always remember me alive in our home.  The girls go home for the day, and I know, I WILL know, that it’s the last time that I will ever see them.  I’ll say goodbye and kiss their sweet faces, and watch my children walk out the door forever.  I hope coma, or death comes very quickly after that…..mercy, please.

This horror movie has been rolling around in my head all night.  There has been the occasional intermission, where my mind plays previews of the staggering magnitude of what I, and they, will lose.  I might see one primary school graduation, and I might walk one into high school if I am very lucky, but the other three will look at the proud, and tearful faces of other peoples mums, and there will be an empty space where their mum should have been standing.  And there will ALWAYS be an empty space where their mum should have been standing.  At every sports match, when they kick a goal, or shoot a hoop, they will look for the proud face of their parents, and only find one of them.  When someone breaks their heart for the first time, I won’t be able to hold them and say it’s ok, I’ve been there too, I know you think you’ll never get over this, but you will, I did, and I ended up with my true love.  There will be no “mother of the bride”, there will be no grandmother.

And I think that makes me the saddest of all.  I always hoped that our relationship would be good enough that they would ask me to be in the room with them when they gave birth to their first child.  I wanted to hold my grandchildren in my arms, for sure, but what I wanted most of all was to watch their faces at the very moment that their life was transformed, that they realised that a heart could open wider, and feel more love than they ever thought was possible.  And I wanted the moment that they looked in my eyes, and they knew, they knew that they had done that for me.  Each and every one of them, they showed me true grace, they opened a heart that was closed from years of pain.  The transformative moments in me, with the birth of each child, are moments that I will never forget.  I felt every one of them happen, so profoundly.   The knowing that as I felt each one slip from my body, there was another massive piece of my heart that I would never be able to protect again….they made me RAW.  Naked.  Vulnerable.  Better.  You did that my darlings.

I think of Gaz.  There was a moment at the netball presentation last year when our daughter won the best and fairest.  She had won the year before, and we didn’t perhaps expect her to win again, as she told us that she didn’t think she had.  I was sitting in front watching and Gaz was over to the side having a beer with a mate.  When her name was called two things happened, first she searched in delight for our faces, and then we searched for each others.  That connection that Gaz and I have, we do that ALL THE TIME when it comes to the children, or to anything we delight in really.  We search for each others eyes, so we can share it.  We MADE them.  No other two people could have done it.  I think Gaz will find love again, and as much as the jealousy rips through me like giant shards of glass, I want someone else to love my children.  But there will come a time that Gaz won’t be able to find my face, and even when he is able to find someone elses, that connection won’t be there, as they didn’t make those children together, we did.  We’ll always have that, my beautiful man.  Love someone else, but don’t forget you were mine.  Don’t let them forget that they were mine.

A friend said to me that as soon as I let fear open it’s ugly jaws, it’s going to gobble all my fight.  And I know it to be true, it’s what I have feared all along.  And so I have to find a way out of this again.  I have to remember that I am a long way from out of options, even if this chemo is not working.  I don’t feel sick, I don’t have a lot of pain, I’m tired, but not out of enthusiasm for life.  This is the hardest hit I’ve taken, but I still think I’ve got the strength to rip fears sharp jaws apart, and crawl out again.  I have to.