The Kingdom of the Sick
Well it’s official, I have another cancer in my left ( reconstructed breast). I’m still taking exemestane and having regular zometa infusions to help prevent the return of the cancer but nonetheless I’m back to hospital on Thursday 10 February for a wide local excision. So I left the breast clinic with a pen drawing on my boob of the planned excision and trying to puzzle that this time the tumour is triple negative this time. This means none of the hormone based treatments or herceptin work to treat or prevent the triple negative tumours. It’s complex to understand but for more information see
My bone scan was clear which was good news and I get the CT for an all over check up, on Wednesday. It’s the day before the operation but at least there will be some preliminary results. So this week is busy.
As I was planning how to approach the CT I was interested to see mention of getting to the hospital ( for 8.45- a challenge as a wheelchair user who lives with chronic pain). The MACS committee I’m part of has been actively trying to improve information and options for disabled people getting to hospital. I read on, please drink 1.5 litres of water mixed with an attached drink 60-90 minutes before. OK, set alarm it’s going to be an early one. And just over the page it says the parking is reduced please do take public transport.
I picture someone, a litre and a half in the tank, chugging slowly across the city on the number 19 bus at the rush hour. I cross my legs tightly and thank goodness I’m close to the hospital. Can you imagine?! It’s not a joined up approach is it and yet all these instructions are in the one letter! This is why travel to healthcare settings is important and yet so often ignored. For many that would be a missed appointment, the final stressor that tips them over the edge between coping and not.
I have been asked constantly in the last few weeks -“how are you?”. I don’t know would be the honest answer. I don’t cry like Cara the lurcher. She had a tooth removed yesterday and she whimpered for several hours and howled like a trapped beast when our daughter asked her how she was. She likes you to get the full force of her pain, grief and disgust at her treatment. In fact we shared so much compassion last night that we all shared the bed too, two adults, a big cat and an upset three legged dog. ( don’t judge!) I think we managed some sleep! It’s rare the cat has been ill or hurt I’m relieved to say, but when he is upset, he goes under the bed, right at the back and stays there till he needs something or feels better. I’m more in tune with the cat. I don’t cry much but I do tip into sleep and not always when it’s convenient!
I had a really lovely birthday last week which made me tearful for good reasons. I am literally festooned with flowers. A small selection shown here! And as if that wasn’t enough we went to the Botanic gardens in the afternoon, setting out in winter sun to see the snowdrops. They were glorious and reminder that spring flowers will soon follow. But caught in a snow and hail squall suddenly was the additional reminder that winter was still in charge.
Davie, our grandson, free of perceptions of seasons, found joy in capturing snow on his tongue. Seeing the world with the beginners or child’s mind is how best to find happiness.
I’m isolating now, pre-op but I do find myself wanting to be in contact with others who are ill. Those who get the negotiations with the future, the anticipatory loss and grief, the uncertainty and feeling unable to plan a trip or a holiday until the treatment plan is clearer. With those others who try to keep their pain from those they love and who want to savour every chance to hug them and hold them close and foolishly try to hold in the tears. There is a comfort and desperation almost in those hugs, can you store up a lifetime of them and wonder if telling them again and again that you love them isn’t almost counter productive.
And yet in the kingdom of the sick, love is our currency.
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