I’m sure everyone working in hospitals are exhausted. Doctors Nurses Physio’s Radiologists and all the many more that make up the hustle and bustle of NHS trying to keep heads above water.

It is the case that patients too are exhausted- today is no exception. 

“I’ma little wired” as in nervous /worried /sleepless not only but also

Teeth are wired up in a two year plan to stop them breaking

Foot is wired up to fix the break.

Bladder is wired to battery implant.

Spinal column is wired to another battery implant

Then today was the turn of the lungs. I was due at the next stage of clinical trials for brittle asthma Or difficult asthma. Not to say difficult brittle patients. Text gave me instructions. Smithfield market University of Queen Mary.

As I arrived I received a text saying I was due for asthma appointment at Barts too. 

Thinking this was all one and the same, the team and I carried on with blood tests 10 vials. Nose. Throat. Lung function. Peak flow and questionnaires times 100 questions asking if I was coughing.

Got through it all only to find that the University of Leicester who are leading the trial had got all the paperwork wrong so I’d have to come back and do it all again. In April.  

The phone exchanges from Barts consultant and boffin Q, chatterbox W and some other doctor meant that it emerged I’d also meant to be at a BARTs appointment simultaneously. Why did I not know? Because the letter had been sent to Cornwall. again. Ffs. Embarrassing moments for all but nice registrar actually undertook to transpose from research to living patient. More blood tests. And a cup of coffee.

Chatterbox kept apologising and saying how wonderful it was that someone as elderly as me could manage the daily e- diary. She also wondered if I’d started art classes to ward off dementia. She was surprised that I had no time for art classes. In fact that I’d only be able to draw Fibonacci cubes really. You see I explained..hospital appointments take up a lot of time , also I’m on the NHS bladder Board.. Westminster ….and teach a bit and and … she ignored all that and showed me her etchings! Oh well. Meanwhile boffin Q chatted away about a nightclub near him, an old print works. It’s ruined the air quality in his area, on account of the weed smokers. He was quite perplexed about it all really.

It’s now after 5pm. I’m super tired. The trains are cancelled. Points failure. Rain is dripping from the station ceiling onto us below , and people keep treading on my foot. The next one I will stick the pin (holding my foot together ) into his or her bum cheek. It’ll be at least 12 hours since I left home before I get home. But that’d be same or worse for medics.

Last week, GP sent me a text. Blood pressure is too high. A pharmacist appointment was duly made. Waste of time that was. She said she’d have to speak to a doctor. Well good luck with that I mumbled. Of course have not heard anything back. I’ve not seen a GP since 2019. Nice asthma registrar asked if GP had done my pneumonia jab. Ah. No. I explained. GP receptionist. That highly qualified Rottweileresque, deemed pneumonia jab unnecessary and she retorted the hospital hadn’t written a letter either. I’m guessing any letter went to Cornwall or Somewhere.

All communication is one way. Hospitals GPs can send messages out …even to Cornwall. But mere patients have no means of contacting anyone at all in reply. ie not wired in the sense of making use of computers to transfer or receive information, especially by means of the internet.”the economic arguments for getting your business wired”actually does not wired as such at all.

Thank you for all messages about mum. She has still not had the operation. I’ve made friends with every director manager admission patient liaison etc person. Everyone is horrified. But still no date set. No support. No symptom control. You could not make it up it’s so terrible. However, an ‘investigation’ has been launched. Big deal.

I cannot begin to explain all the details I’m so appalled and tired and worried. Trying to support  my parents and keep them calm is not easy when I really don’t feel calm about her situation myself. 

Meanwhile Jerome sent latest bladder results. Jerome the only two way communicator, the only one who thinks outside the box. He must be exhausted too. He sends messages at dawn. He replies. He fixes. He THINKS. But alas, this bug or bugs, is resistant to what meds I have tried. Now to get something else. But I’ve been in a different hospital all day. No time to sort a script. I’ve forwarded the results to the OPAT team. No reply. No doubt they are too busy too tired too preoccupied with heads above water.

Im wired. Totally. Utterly wired.