Post 169: Is this it?
Receiving guests is the highlight of the day, but I want more.
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The sun is out and there is no breeze, the kids at the primary school are excitedly screaming in the lunchtime playground as we saunter past. All is right with the world, if you keep away from the news on the major services.
My Darling had to get some salad and stuff for the dinner tonight to feed not only us but our daughter-in-law K, so we need to pop down the local shop. She’ll eat anything, like I will, so she’s a great guest; no worries.
We might even get a visit from Little Bro later too, he said he might.
K has some work stuff to do while she’s staying with us a few days but we won’t see her much. She’s a big brave girl and takes the train down from Carlisle through to London and then south to us. It’s water off a duck’s back to her but to me that’s a big adventure. All those hours on a train and the people you see and countryside you’re passing. The whole north-to-south of England is out that window and in the autumn sunshine too.
Anyway, I was really happy to be outside and enjoying the warmth of the sun on my back as I held my Darling’s hand and wandered to and fro from a chore that was for me a delight. Away at last from the seat I’m imprisoned in all day. Comfortable but dull, without a pretty view to peer out at.
But I wouldn’t be without it now due to my mobility, but it’s not real life.
We got back home and she asks me if I’m ok for the last time. I repeat that I am, but I’ll sit down and rest a bit just now.
While we get a bit of lunch I ponder the exercise and its value to me. I haven’t been out the house for over a week since the blood test, so I’m pleased with myself, but realise I’m still recovering and my back aches in a nice way to remind me to take it easy.
The email never came today. No matter how many times I looked for it.
I don’t mind the fact that someone might be buzzing behind the scenes working on a medical response adequately answering my queries — what I don’t like is not knowing that’s happening. Just a little reply to say “I’m working on it” would be fine. But there’s nothing.
By the mid-afternoon my Darling has picked K up in the car rather than have her come up on the bus the last leg of her journey, so we are all chatting away catching up on stuff. Work stuff, family stuff, loads of stuff. It was lovely. A distraction better than the Kdramas that are wearing me out with the romance and drama surrounding their lives with their more active and interesting problems than mine. The mental getaway I’ve been using for years of my cancer travels has helped me immensely get away from my intense anxiety about what was going on inside me. It doesn’t ever go away, does it? It just hangs over you like a cloud — it’s always there if you care to look.
So the human interactions with K are so good for me.
Mr Vicious too has come in to welcome his old mate. He’s mostly lately been happy to be in his conservatory lazing about, not wanting anything but food twice a day and the odd belly tickle. He’s not been in the house much at all but he must want to say hi.
He said hi yesterday with a big brown mouse he’d caught, which he left as a pressy at the back patio door. So complete was his gift it could have been asleep, but sadly I had a duty of care and had to dispatch the poor innocent rodent and get him well out of my Darling’s way. She really feels sorry for the kill but is glad that it’s dead and not being played with, as is the way with Mr V sometimes.
Looking at the phone screen again I was perusing the possibilities of a replacement TV. The recovery suite upstairs has a very old inherited one and the HDMI cable is not connecting properly so the colours have gone weird. I’ll just buy another one, there’s no hope for this one, it’s had its chips.
But a notification pops up and I see in horror that an email has come in from the Patient Experience Officer. That must be about my PALS complaint (about the treatment which led to my lung clots) but I freeze rather than open it.
It brings back the desperation I felt when it happened back in late April, just 8 days after chemo started, and it leaves me feeling sick in my belly, to be honest.
I tell my Darling who says open it later and deal with it then, and she held her warm hand tighter on my leg in comfort and things carried on with the chatter and catch up with K and Mr V.
Later I did open it and after worrying so much about it found it to be just a message to say that the final response will be written up very soon.
Oh! That’s kicking the can down the road again but is nearly over, I suppose.
I’m not expecting anyone to tell me I’m right. That I was treated badly and shouldn’t have had clots in the first place, but I live in hope.
It’s not now life and death like it was back then, but it changed my life in an instant and is the very worst I’ve ever been medically. I feel I nearly died. I feel I’ll never get over the feelings I had then — that this anticoagulant was missed and was the cause of an unnecessary event that slayed me.
You can tell it’s pouring out of me like it’s just happened again. I’m not comfortable. I’m not over it, I’ll never be over it. Every bloody time I get a complaint letter back it’s the same. Deep trauma and tears.
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Later on Little Bro turned up and put a smile on my face, all our faces.
He’s a loon, my little Bro, and a loveable loon. He’s in this world to make you smile. It was just what I needed.
Between him and I we ate a whole Battenberg cake while laughing and joking. We had reached a deep vein of stories about our childhoods and K was giggling at our childhood madness and mayhem. Also the food we were forced to eat.
Mum would kill the dinner early morning and leave it plated on the top of the oven for when we got home to reheat. But invariably the plated food was dry and another roasting at the hands of us kids was not ever going to make it taste any better, so sometimes it went straight in the bin rather than try our luck with the devil’s food.
That would lead me to reach out for the white sliced and the marge, and with a massive helping of sugar eat my favourite snack: a granulated sandwich. Yum.
As I’ve said before we kids were latchkey kids and enjoyed freedom, but we survived ok. The dinners were all Mum and Dad could muster under the circumstances and give us plenty of memories about the childhood we had — which is so different to the ones our own kids had.
Looking back there were so many kids worse off than us. We lived on the outskirts of town and loved the countryside and all its beauty and attractions as kids. Freedom we had in spades, fun too. The odd trouble was never a biggie, and we had an older generation of neighbours that looked out for us and probably entertained us more than we thought. Some golden days amongst some very odd parenting skills acquired on the run. Mum and Dad were years apart in age and mentally and that never showed up until they divorced (happily) later. So looking back it’s easy to see there were always going to be problems in their relationship with each other and the three little nightmares that we were sometimes.
But here we are aging and laughing about it, eating Sunday cake and choccy bickies on a Tuesday while reminiscing about our real lives — well, the funny bits anyway.
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I’ll email again tomorrow and see if I can elicit a response from my Oncology team, without driving them mad.
I want another walk out tomorrow. I enjoyed the warm clean air and the excuse for a sit down afterwards with my Darling.
Enjoy your day.
