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2004 Archive 9: Scary Progression

Stiletto Wheels Question Mark

Right to Benefits?

Continuing from a dire 2003, I had a diabolical first half to 2004 – colds, laryngitis, pesky infections, yet another relapse in May so, back to the slammer.

Following the usual IV, I became a little alarmed at my post steroidal swelling … asked EaZyD to stick a ribbon (er, steel chain) round my ankle as I am going to float off soon like the Michelin man on the Bibendum building.

And then, wouldn’t you know it, life just got worse.

I relapsed again in August 2004: way too soon, so I just had to grin and bear it for a bit.  Tried to hang on until September (still too soon) or October (would be better) but the speed and the impact of my deterioration became a real problem.

Sadly, when I was ready (desperate) to go in, the hospital had no beds – a new NHS directive to save costs, I believe, called: stop treating the patients!

As I was forced to wait, my relapse gathered a frightening pace.  We were frantic with fear and disbelieving … in the 4th richest country in the world, I can be left blind and tetraplegic because our, supposedly free at the point of need, health service that we all are forced to pay for, cannot arrange a three day course of one of the cheapest, most widely available drugs on the market that we know will prevent it.  This is no health service … more of a NO health service!

December 2004: as soon as I got in, the relapse stopped – as usual – the minute the steroids hit my bloodstream … but the damage is done. The knock on effect is not yet clear but my quality of life is again significantly poorer.   At present, I cannot hold or feel things and my arms are numb and painful.  I cannot transfer into our car or hold cutlery or books; typing, filing, opening post – so many day to day things are affected it is impossible to describe.

I am shaken and bruised by it all.  For the first time, I feel really let down by my consultant who said ‘this is how it is’ and ‘there are people with brain tumours waiting’.

That is really not the point, is it?

When we pay for our health service, I do not remember a caveat that says I will be treated if resources are available which may not be as and when I need them.

My memory is ‘free at the point of need.’

If we are seriously saying that the health service has to choose between treating brain tumours and neurological paralysis, this is not really a ‘free at the point of need’ health service is it?  More like a sit upon a lucky star and hope for treatment or make damn sure you can privately fund your treatment … everyone else can go hang, or go blind, depending on your (bad) luck.

I feel no assurance it will be better next time and no better hearing everyone say ‘how awful’.  It just doesn’t help.

I am left to deal with the consequences and it isn’t OK.  I don’t ‘get used to it’ and I am not able to do my cheery cripple act at the moment – did you notice?

I have now got to see another world bloody expert and they want me to do yet more drugs, experimentally … which may make my hair fall out.  This is just another of those dehumanising experiences which are unbelievably dispiriting.

To my mind, the problem here was the failings in the NHS, not the drug therapy.  I did not see the solution as being stronger, potentially more damaging, toxic drugs – of uncertain effect – but a more efficient response by the NHS to relapses with proven, less toxic, effective drugs.  No one disagreed with me but they just thought they’d like to ‘see what happens.’

‘Will they make me better?’

‘No.  They might give longer between relapses.’

‘Side effects?’

‘Daily vomiting, higher cancer risk, hair loss, bone malformation, constant fatigue …’

‘So, I feel ill every day, might get cancer, deformities and my neurological symptoms will not improve?’


Me: ‘not happy’.

A junior doctor said: ‘why would you care?’

‘Wouldn’t you?’ I asked.

‘Don’t you realise you’re really very ill?’

Amazed, I look at her.  Still having to live a life and, preferably, without destroying everyone else’s.  I can’t be sick and asleep every day if it can be avoided.

She just couldn’t, or did not want to, acknowledge this.  We agreed to re-visit my options after I see the Cambridge-based World-Expert.  I went home for Christmas.

I am dreading the looming Xmas season.  It is just all too much to try and be jolly.  What a rubbish year this has been.  Again.

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