Weather of the week sort of reflects the mess I get myself into by Wednesday.

You may remember I am on a weekly, for 6 weeks, treatment of teflon type stuff to line the 50 year old frying pan which Montmerency described so accurately in relation to my bladder. Well Week 1 was a wipe out, as the infection raged, and antibiotics reacted. Week 2 was done in hospital but some weird breathing issues after. So sensibly Week 3 was to be again in London and with due care. Only trouble was that never got booked, so I spent the week cancelling half term plans and waiting, asking and waiting. …nothing happened nothing explained. Actually worse than that, get told ‘things have to be arranged’ What things? Its that feeling of the need to know basis that really gets to me. ‘Youareonlythepatient – poor IDIOT’

Then back to school and a flurry of emails signal yet another instay in hospital for Week 3 treatment. Only trouble was it was to be an ‘operation’ no one really could explain. Once more I make last-minute or I should say midnight cover plans for school.

An aside: when my siblings and friends were going through their various horrible marriage breakups, I always cleared Friday evenings to await the call. Lawyers and Medical secretaries the world over are well-trained to send the unhappy news, by email at 5.00 pm on a Friday, or even Thursday for those that do not work on Friday. Then, no one can get hold of them til Monday.   In my case its can also be 5.00 the day before the procedure.

No come -back that way. Much less stressful. For the secretary.

The recorded message announcing the office has closed one second after the email is sent drives me slightly over the cliff. …

So, back to Wednesday, crack of dawn, fix dog-sitter, fix washing, ironing, work, emails……Make myself walk the walk to my fate once more. Admission nurse, does the operation preparation. Rings, nail varnish, gown, paper pants. Asked who the anaesthetist is was or will be etc…you know the form, looked pityingly when I said I really don’t think we need to do all this. There there dear….shhh…what the hell do you know you-are-only-the-[patient. With a rising sense of panic, made sure I have a dis-solvable on impact miserable grey paper mache pewk bowl to hand, 

 oh and I am NIL BY MOUTH for the ‘operation’ when had I last eaten drunk??? etc etc.. FFS.

I jumped to my feet, to see tall surgeon, aka #1 of last year, dash in. ‘Hi. Heard- you- were- here. Lost- invite -to- your- party. Love- to- come…’his quick- fire social banter evaporated as poor old Dipstick arrived. Looking even more exhausted than ever, green about the gills ready for the sick bowl too. Then they both started firing questions at me.

‘Why are you here? ‘said Dipstick. ‘Bloody good question’ I muttered.

‘Are you better?’ Asks #1 man. ‘in parts…’ I mumbled.

‘Finding it all a bit too much ?’ Biting back the tears I nod…furious with myself.

They then had delightful ( not ) natter between themselves as to how to instil the ‘teflon’ they could not agree and #1 ambled off …….

‘Right lets do this’  Dipstick got the confused nurse sorted, explained it is not IN ‘theatre’ but here IN  ‘situ’ that he would INstil. Did that. Asks me sympathetically if I was ok…?

Well the dam burst. I told him exactly why I was not ok, why continually not telling me what the hell was going on, why continually changing plans on a day by day basis, was not only frustrating, but utterly disruptive, mentally and physically. To me, to my family, my work, everything. I yelled at him and asked him why he’d even asked me why I was there, that he had complained (earlier) that he had had so many calls about my allergic reactions. He replied:  ever so quietly ‘ I was trying to be informal I do not mean it.’

I asked how on earth anyone could get hold of him: Not even the hospital. That they’d told me to ring 999. That is ridiculous he agreed. But ‘just ring me he said…’ring my mobile’. I could not stop I ranted on so long I think the poor nurse was about to start crying too. I so rarely let go so rarely lose it that this time was probably brewing for years. Sorry Dipstick…it hit you. Hey very sensible plan, you surgeons, make sure you have a nurse with you at all times. Just in case the patient goes berserk. In school we always have open door or accompanied-by another adult, when talking to students on their own.

So it went on. He was actually utterly brilliant after that. Came back to make sure I was ‘still alive’ I got THAT joke! several times. He met my youngest two who glowered at him…eek. He came back next day. He was good. I apologised and he sympathised.  More than that we together made a sensible workable plan for the following week. He even remembered to tell his secretary. He even reminded me to phone him if I needed to.

Back home, #1 man, ( he’d love that description), must’ve been worried. He tried to contact me at home. That did not quite work out but I appreciate the thought.

Melanie has far worse than me and the extract below is her take on life.  Disabled as she is and I am not in any way in her predicament, I totally agree with the sentiment applies to patients ie people, everywhere:

The Times 11 June 2016

Melanie Reid Spinal Column:

That’s the trouble. Everyone thinks disabled people must be handled like unexploded bombs, and it is not good for our reputation as a tribe, or as individuals. Disabled people are individuals. We have a sense of humour too. We can laugh at ourselves. Indeed, for some of us, laughing is what keeps us going. All I seek, personally, is the normal respect you would give anyone. 

Comments

The Times  11 June 2016 JE to MR

Extract2 from Times  11 June 2016: MBE= Motivational for others in the same position, Brave, as are  others in the same position, Educational, giving us able bodied a poke in the eye to pay more attention to the needs of others 

Extract 3: Its so annoying when  you patronise and treat me like an idiot

The Times