How long is a piece of string?

 

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Photography by Jodie Berthelot

That was the common and most popular answer I got every time I was brave enough to ask “that” question.  How long does she have?  It’s what we all want to know. How much longer have we got with our love ones? Will it be a year, 6 months, weeks or just days or even hours?

The doctors vaguely answer with sentences such as “we just need to let things take its course”, “we can’t give you a time frame”, “it’s just a waiting game”, “time will tell”, and the list goes on. They give you the medical jargon of what is happening, the scientific mumbo jumbo, but its cold comfort when you want to know how long you have got.  They dance around the question, like they are walking on hot coals. But, I also get why they do this.

But, I think the bigger question is what we would do or not do or do differently if we did in fact know how long the piece of string was.

For me, I was an information seeker. I wanted to know the why and how, and what would happen and how things would progress. I needed to know the changes that would occur, so that when they did I knew how best to deal with them.  I wanted to “prepare” myself. I wanted to know what was going on. Mum didn’t, but she understood why I needed to. I will be forever grateful to her for her understanding of my needs. I felt that if I knew this information I could help prepare others for the inevitable.  With mum’s permission, I spent time with her Oncologist to have this discussion.  It was gut wrenching hard. I asked the Dr to be brutally honest with me, not to leave the bad bits out.  And she didn’t.  I knew how the cancer would progress, what her symptoms would be, what we needed to do when these changes started and continued.  I walked away knowing exactly how mum would die.  I walked away with a few pieces of string. One shorter and one longer and one in between.  The Oncologist gave me a rough idea, and then said “give or take 6 months”.

The Dr’s were not as forthcoming with information in mum’s last weeks when she was in the hospice and then the nursing home.  It was almost like they didn’t want to tell you how someone dies. How someones body shuts down, what the signs and stages are. How and when organs stop functioning.  It wasn’t from lack of asking or trying. I was able to piece information together from the Dr’s and the nurses that I was able to befriend in this time.  Google is also helpful.  I know this is probably morbid and you may even think that I crossed the line in seeking the information. I just needed to know for my own sanity.  I was bearing a large load for my family.  So large at times I crumbled, but somehow knowing or seeking this information helped me, made me feel like I was in control of an uncontrollable situation.  It helped me to know when I had to fight for mum’s dignity, when I needed to push harder for doctors, nurses, domiciliary care, and palliative care to do what they had to do, or do it better or do it differently because it wasn’t helping.

In hindsight, knowing everything I knew and sought to find out, I wouldn’t do it any differently. Even though at times I felt burden by knowing, I knew in my heart that it was what I had to stand up and do for mum, but also for dad, to help him understand and deal with the facts too. With my knowledge I was able to guide us through the tough times and be more prepared to make the hard decisions.  It’s too easy to say you don’t want to know. Yes, it protects your heart and head and sanity at the time; but that is all we have, time. And we don’t know how long, so we need to be vulnerable and put our hearts on the line so we can make the most of that time.

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Mum made her decision to stop treatment so that she could have quality of life.  When her secondaries returned, we initally thought that treatment would help keep them at bay. Her treatments made her terribly sick and the last 2 rounds of chemo didn’t have any effect at all on her tumours, they in fact grew. The only effect it had was terrible nausea and diarrhoea, tiredness and the list as long as your arm of other symptoms.  It wasn’t pretty.  She decided that feeling sick like this all the time was not how she wanted to spend the length of her string, however long it was.

Armed with my knowledge, and my pieces of string, we were able to do a “Bucket List”. I remember we spent the Easter weekend together in Normanville and we sat around the table and mum wrote down all the things that she wanted to do. They weren’t outrageous things like bungee jumping or sky diving. They were little things like going to the zoo and seeing the Pandas, going to Norfolk Island, getting family photos done and glamour shots (see above), seeing Josh Groban in concert and getting a new kitchen.  Spending time with family and friends. Over the length of the pieces of string, we were able to tick every single one of these off, and add more along the way. I have so many treasured memories now of these things that we did together.  My kids have treasured memories and photos to look back on of their Nanna and the times they spent together on holidays.  Mum’s friends have special memories of the fun times they had together and lunches we had with each other.

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A day at the Zoo visiting the pandas with the grandkids.

I don’t regret ever asking the question, many times, no matter how awkward the response might be, it always gave me hope.  Even as the string was getting visibly shorter, there was always time to do something, make one more memory, take one more photo, have one more laugh and hug.

Never underestimate the length of the string. It’s always long enough.  You just need to make a choice of how best to use it.

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