A very strange thing has happened. For the past couple of weeks I have hardly been able to turn on the internet, let alone blog, Facebook, emails and all my favourite regular blogs have remained unread……. To my regular blogging and facebook friends. I feel really guilty about this, but I am sure things will return to normal soon.
In fact I am finding it very difficult to sit and write this blogpost. But this feeling needs documenting as part of the record of my lifes journey.
It is almost as if I am shunning the virtual reality of the internet for the real world. Am I finally giving up the escape route of the internet for the harshness of life?
Certainly I want to savour each day. I do not want to turn on my computer or look at my smartphone.
Sharing the experience of a loved one who is dancing with death seems to have shifted my perpective on life without concious effort or even my knowledge and unless you have been in that position it is impossible to explain.
I find it very odd how our lives go on as normal. No wringing of hands, no sleepless nights, no anxious knot in the stomach. No feeling of worry or doom and gloom. Most of the time the cancer is not even in the forefront of my mind and certainly not in Michaels. . Although of course our lives are organised around infection control, regular injections, medications, blood tests, visits to the specialist nurse, blood transfusions and of course chemotherapy every three weeks. We just focus on the here and now.
I must admit I get tired easily and most nights I am in bed at 2100h. On the days that Michael has blood tests Imy fatigue is greater. Probably becuse I am subconciously anxious till we get the results.and know what we are dealing with that day….. and we are not without our odd moments of understandable fear, which makes me grumpy, but they too pass quickly and I am aware what is happening.
Other than saving for Paris at Christmas, we can make no plans whatsoever, because the blood picture changes from day to day. So we have to live in the day and somehow that sharpens the senses to what is happening around you.
No day dreaming, for the future is so uncertain. No dwelling on the past, for it is gone, cannot be changed and you do not want to waste time on that.
So what has been happening?
Well, as the greatest risk to Michal is infection, I spend a lot of time cleaning, and have really got onto a routine. …. My Grandma woyld be proud! ..oh the irony of wanting to be a slut!
Michael is mainly well, He tires easily, he is losing is hair, but straight white hair, as opposed to curly brown, is already growing back. He is wonderfully cherful, positive and generally in a good mood. An inspiration to all his family.
I spent the weekend camping in the back garden with two of my grandsons last week, which was fun. Michael cooked the sausages, but slept in the big comfy bed inside!
I had coffee with my freind Lizzie to catch up.
I am reading one of my favourite writers, Kate Atkinsons, Life after Life. A fascinating page turner of a book about what would happen to a baby born in 1911, What would happen if small incidents in her life were different, how the course of her life would have changed…..bit like sliding doors, but with several different lives running parallel.
I go to work and do my job as normal. I cannot be bothered to get involved in office politics or anything other than the work at hand.
I really have been very, very, touched by the kindness and thoughtfulness of people far away.
From Paris, a candle “a little whiff of Paris, to be with you when you can’t be here” From Israel, a keychain designed by Michael Negrin being sold to raise funds for cancer research, From Boston , bespoke, hand made, biscotti buscuits. Lots of cards and well wishes and personal enquiries. …… Most of which moved me to tears.
…and lots of offers of help, from collegues, to change shifts.
…and so life goes on. Michael had his third cycle of chemotherapy on Thursday, so next week will be his vulnerable week, when his blood cells drop and he is suceptable to infection, severe anaemia and bleeding.
Two more cycles to go.
…and of course I miss Paris and my grandchildren desperatly!
A year ago I was welcoming my son and his family.