Op Hunt Saboteur: 2

Had a call from neurosurgery at 11 to say that my op is on for tomorrow. I’m to arrive on Fal at 1030.

The relief hits in a physical flollop. This evening  L visited en route between Cornwall and Coventry, and had some lovely deliveries including a knitted mermaid with three pink knitted crabs, a swimmer keyring, and a stack of audio books.

I feel quite afraid this evening, which I wasn’t last Friday. Maybe more to do with the potential for no beds again. All I can do is hope it all happens without a hitch.

I’ll be off line for a while.

Thank you for your support and friendship.

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NHS finance whistleblower

This document from a whistleblower NHS foundation trust finance director says more than I can about both the NHS trust deficits and how they are being managed and fudged under duress by the DoH. I don’t profess to understand all of it, but there’s enough here to scare me. Note the there’s no money for public services point too.

Alongside the financial content, I wonder why this man is afraid of being exposed as a whistleblower in Hunt’s NHS?

Here’s the statment on the Plymouth deficit.

 

Negative positivity

I’ve been thinking about positivity a lot recently. It feels good to have positive vibes heading my way from all directions. Yet positivity is also a kind of scourge of our age.

The expectation of a positive outlook can exert a huge pressure onto a person like me, who is in a situation where life is literally subject to the whims of fate. Positivity given is always meant well in my experience, but how often it has the opposite effect. I tend to be positive, to take positive – if not crusading – actions. But sometimes I want to scream, or lie on the floor and give up. That starts to feel like a failing when you’re being held up as a paragon or an amazing person for getting on with it in whatever way presents itself. If that involves three months of crying constantly, then I don’t have a problem with that. It might even be a positive act.

I know I’m lucky; lucky to be able to write and to have found a wonderful writers’ group in Stirling where I attended the university as a mature student in the 1990s. The writers at the local, council-supported group were instrumental in the development of my style and interests. One of my favourite quotes on how to be a writer is from the late, great Maya Angelou whose writing I first encountered via the group:

“Some critics will write ‘Maya Angelou is a natural writer’ – which is right after being a natural heart surgeon.”

It’s being able to write, and being able to adapt to the brain swelling-related deficits in that area, that’s enabled me to keep going with my head pretty intact through the trauma of the past few weeks. It’s also given me a purpose where the various elements of my fairly random life path have melded into this blog.

One aspect of dealing with the big C word is the power that word holds; I described it as a Jihadi snuff movie in an earlier post. Having already had breast cancer in 2010/11, this isn’t a new experience. There are plenty of other illnesses that are equally or more life-threatening, yet they don’t carry the punch; If there’s a disease of the age, cancer is to us as TB was to the Victorians. However, considering a brain tumour is quite another thing. It’s affecting me in a way that breast cancer never did (I didn’t even know that was there), because it’s messing literally with my mind and also my body. I feel ill.

When I was on the speedily efficient pathway towards neurosurgery at the start, I had a momentum. That came to a juddering halt two weeks ago when the meteor of the bed crisis walloped into my path, cracking the earth beneath my feet and setting up a series of tremors and reverberations that continue to circle. Circling is not what I need, I need a positive pathway towards discovering the nature of Hunt and then a treatment plan. So to be hit by the arrows of mindless positivity really does grate at the moment. As does being told how well I look. It’s the steroids. I neither feel, nor am I well.

Hunt the tumour made himself known as the steroids reduced the surrounding swelling which had caused me so many problems over the past months.  I felt Hunt initally as a pliable, generalised right-sided entity, but now he has assumed a more weighty form. He’s curdled and crusted into a hard-edged, dark presence like a bakelite light switch. His carapace still wobbles at the back of my neck, but I can feel him exerting pressure and the focus of my headache is there. Worse I can feel him growing. Little prickles, an outwards force from the centre. All in my head? Yes. But whichever way you interpret that, it’s not positive.

I’ve had to continue ask people to back away from messaging me, because I can’t connect with them at the moment.  While they’re all asking me not to reply, I feel bad not doing so. The utter desolation from Friday’s cancelled surgery meant that each kind thought and positive message made me feel more like Saint Sebastian, under barrage from ironic arrows as everyone tried to tell me it’d be alright. It won’t. So much love and support is what’s keeping me going, of course, but I can’t always engage with it because this is my world, and as Kari keeps telling me, it’s bloody hard, and it’s going to get harder. I like that. I need to know the worst too. I need to deal with that.

Addenda

Yesterday my cousin Sarah and heavily-pregnant goddaughter Kayleigh visited. We talked for hours about our childhood, and about Kayleigh’s baby and plans for the future. We also talked about some of the darker aspects of life. I’d call that a positive experience overall, with some balance.

My GP also called to see how I am, having seen the BBC Spotlight interview. My white cell count is slightly raised from the bloods he took last week, and so he wants to do another blood test this week in case I’m brewing an infection. Hopefully though it’s just the effects of the steroids. He has emailed Sarah Wollaston MP, who was a Devon GP and whom he knows, on my behalf. The NHS is still there for me.

I didn’t hear from the hospital which is beyond disappointing, and I got no reply to my calls, leaving a message on Tony’s answerphone in the end. After Friday, I think they owe me a call even if it’s to say, as I suspect, that this week’s not looking good either. My friend from Friday, however, texted and has had her new date confirmed, which cheered me no end. She also advised me to contact my Macmillan nurse to chase up what’s going on; Ellie had come to see me as I waited for surgery on Friday, but didn’t know it had been cancelled. I’d forgotten about Macmillan in the rush, because I wanted to get the surgery out of the way and it had been full steam ahead. I can also have some complimentary therapies there. So my plan today is to access some of that holistic support offered by Macmillan.