Tuesday, November 30, 2010

Frightened to death

I have been ruminating (as we cow like types will) on fear and what makes me afraid. It's an easy one, spiders number one and, as of last year, bikes number two. Not dying you will have picked up and more of that later. Clearly my fears are all irrational but that does not stop the grinding panic, the rush of blood to somewhere where it is terrifying. I have a large nature book that I can't touch because it has the most gruesome picture of a spider's face, I can hardly bear to type the words. Every time the last episode of the Lord of the Rings film comes on I tell myself that it is just that, a film, that I have read the book a hundred times, that I am safe at home and all is well. No good as soon as the intrepid travellers enter that mountainside into Shelob's lair, I have my head buried in a cushion and nothing will get me to look up.

And why bikes? I used to live on my bike when I was about ten. I could ride with no hands and on one wheel, I could pelt down our hill with my feet off the pedals. Then last year, nearly 50 years on, I decided to get myself a new bike, I hadn't ridden since I was about thirteen. I didn't get just any old bike but a £2000 beauty that gave you power assistance as you pedalled (remember the fat leg problem). I proved the old adage wrong you can forget how to ride a bike. Oh I could still just about keep upright but I went into a flat spin literally if I had to stop, turn round or go near another human being or form of transport. In the end I fell off so often I was driven rigid with fear and now can't even bear to pedal on the straight.

My terror therefore is of scraging (Brummie term means scraping) my knee or seeing ghastly images of spiders but not of this vile cancer that is invading my body and doing me real harm. I simply cannot get the adrenalin flowing on its behalf. Sometimes when I feel dreadful, I have recently had a cold and a cough and I fell over in the snow and ricked my bad leg; I feel a glimmer of something but it's more like irritation. I used to be frightened of dying, I could get myself to this place where my scalp tingled as I made myself think about what not existing might be like, but it is much easier not to do that and frankly now I can't be arsed. Of course I am frightened of being very ill, but am comforted by the fact that when this has happened in the past, dreadful flu or last winter's cold, I really haven't cared whether I lived or died so when the time comes I will be looking for relief. Also I get claustrophobic so I am frightened of coffins. I'll have one of those whicker jobbies please, they seem less closed in, idiot that I am!

People say that believing in the after life stops the fear of dying and gives comfort. It seems for me it is entirely the opposite. I would be absolutely pissing myself if I thought I had to go somewhere else. What if I didn't like it, didn't fit in? What about those terrible judgements they say will be made about you? I haven't done much that is really sinful but I am no goody goody. I tell lies, I have chocolate and eat it all by myself, I am anti-social and I used to be a flirt. I covet my neighbours clean house. And what if all that sent me to hell, I know it would be filled with spiders and bikes. So thank goodness I know that I will be going nowhere but into the collective memories of my friends and family. To me that is the great comfort and probably the reason I am not afraid.

Of course I might die in the street after seeing a spider and falling off my bike in which case be assured that, as I breathe my last, I will be shaking in my boots.

Saturday, November 20, 2010

The emperor has no clothes on

Just back from Bournemouth where the NHS Alliance were holding their 13th conference and my old organisation were helping to make it all happen. I was only there for the beer and to see old friends, but in the end I helped with the stage management, managed to dance a few dances and found myself on the reality check panel able to tell the Chief Executive of the whole NHS, the head of NICE and the Chief Executive of the Care Quality Commission what it felt like for patients these days.

It was the emperor has no clothes on time for me and I told them in no uncertain terms that he didn't and that what we received, in secondary care in particular, was far too frequently substandard and at times downright unsafe. I put in a plea for us poor buggers with rare conditions who could easily be pushed into a cruel postcode lottery if there isn't a national scheme to fund our treatment. I asked them to ask themselves how 26 miles across the channel our continental neighbours were receiving a far better, higher quality service that had much better results, when they didn't have a zillion quality standards, or huge organisations to monitor what is going on, or wave after wave of new policies, strategies and management models; just simple, easy, good quality.

I was asked what I wanted from my GP, I said I wanted him/her to be able to send me directly for imaging or other diagnostics not to have to go via secondary care, that I wanted that to happen very quickly. I asked them to make sure that when they referred their patients on to secondary care they made sure that they saw someone with at least as much expertise and experience as they had themselves, and to be aware that this does not happen now; far too much diagnosis and ongoing care is left to Senior House Officers who simply are not senior enough to be able to pick up the exceptions to the rule.

It was amazing how many of the delegates, mostly GPs themselves came up to me afterwards and gave me chapter and verse about the poor care they and their families had received in hospitals etc and they all seemed to still be smiling at me so perhaps I have kept a few friends and maybe together we can start to reclothe our beloved emperor even though times are tough and we might have to make do with M & S rather than Yves Saint Lauren .

Sunday, November 14, 2010

A lump in the throat

Well the pain in the shoulder blade that nearly finished me off has faded to a whisper but the radiotherapy soldiers are still creating havoc as they follow their scorched earth tactics on my lungs and gullet. I am on a diet of scrambled eggs, risotto and for today's Sunday blowout I am making my melt in the mouth steak and kidney pie in the hope I can get it down, and would you believe it a milk jelly made with evap.

There is this lump in my throat or around the top of my rib cage actually, that means it hurts to swallow. I have always been a fan of swallowing, you get nice tastes on the way. All through the dreaded chemo I was fearing a loss of taste as other poor victims have fallen prey to this, but no I was saved and gorging my way through the best restaurants of Britain, France and Italy has been my way of making the best of this bloody nightmare,

Now my gorge is not so gorgeous, but they say it will abate and yes I will enjoy a bacon sarnie again until then.. well there was that fantastic fois gras brulee I had in Perigueux that had nary a lump, and rice pudding and Stewart's wondrous watercress soup and endless cups of tea.

However, you will forgive me, I hope if I say that despite the wonders of tasty slops, this most recent turn of the screw by the cruel and ruthless Leio is a bit hard for this fat foodie to swallow.

Thursday, November 4, 2010

No pats on the back

OK I know I am a brave little thing at times and yes I have scored my 100 on Scramble but please don't pat me on the back or give me a hug. They said it would get worse before it got better and they were right with Round 1, hopefully the second prediction will be just as accurate.

It's been agony but I am discovering the wonders of morphine, even if it does turn you into a Zombie. Danny was a Zombie for Halloween so while I know nothing about Zombie genetics, it is only right that his Nan shows some of the characteristics I suppose. The drugs have also put a strange smile onto my face which beats the grimace of yesterday.

Typing hurts so that's it for blogging for today.