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!
Love Denise
edit…ps I nearly forgot….I won the prenium bonds again!
A year ago I was welcoming my son and his family.
https://denisefrombolton.com/2012/08/14/the-prodigal-son-returns-kill-the-fatted-calf/
I am glad you posted, Denise. I’ve been thinking about you and Michael and hoping all was as well as could be.
Best wishes, Merilin
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Thanks for thinking of us Mez. I hope your own difficulties have been resolved. Are we on Facebook? Send me a friend request. Love Denise
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So glad to see our update as I think of you and Michael often and want to know how it’s going. You guys are troopers and your attitudes are admirable! I will continue to send positive thoughts and prayers your way. Love you guys!!
Jane
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Jane, thanks for your words and thoughts. We are just ordinary people trying to cope with a difficult situation. But it helps to know that ther are people across the world rooting for us. Love Denise.
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Thanks for sharing these intimate thoughts Denise. You capture everything that is, well, life. My warmest wishes and love to you from across the sea.
Dawn
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Thanks for your kind words Dawn. Love Denise
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This is the first thing I read when I woke up this morning after a rather restless night thinking about my dad who is suffering from dementia. Thanks for making my day start out so sweetly. You are so strong and courageous. Love to you both. We will see you in Paris!!!
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Sorry to hear about your dad Suzanne. I lived through my mums battle with dementia and I know how hard it is for carers. You will be in my thoughts and l send good karma. Love Denise
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I am full of admiration for the way you and Michael are coping. It’s impossible to know how you will react and deal with day to day life in this situation until you experience it and you both have such strength and fortitude. I love the idea of your Paris for Christmas fund and am willing you to get there! Look after yourself, and hopefully will see you soon, love from Janet
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Thanks again for your kund comments as you say none of us know how we will react in these challenging situations. The rest the day did not go so well. (See part two)
Love Denise.
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What an excellent post Denise! Thanks for the update as I was wondering and thinking about you a lot.
I say it again, you are both strong people for what I’ve learned from reading you and I know you’ll be OK once the “not so pleasant” (to call it nicely) times pass.
So jealous to hear about your Christmas in Paris, certainly something happy to look forward to!
Keep taking good care of yourselves and keep us posted!
Hugs from the other side of the word.
🙂
Sylvia S.
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Thanks for your kind words Sylvia. Your blog inspired me to get going again. Love Denise
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25£…. that sounds like lunch at your favorite café. Go Premium Bonds!!!
Can’t wait to read your Christmas in Paris ’13 posts, Denise. Bises. S
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The money is going in the Christmas fund. Hope you are having a good break.
Love Denise
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Sliding doors is one of my favorite movies, I’ve watched it many times, John Hannah is just so delicious in that movie, I like Kate Atkinson too I’ve only read Started early took my dog (bought it because I loved the title) and Case Histories (also good)so far, Ill def look out for Life after life.
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Hello moira. Thank you so much for your reading my blog and making a comment.
Hope to see more of you in the future.
Love Denise.
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