Another week of hospitals and I think I have slightly lost the plot!

Saturday back to L and D hospital for teeth wire re wire. Trolley outside scanner still there! Sunday took sample to the private lab.

Monday took sample to GP. Just in case they manage to get a culture or even send for one. As of today nothing back. Of course. I do not think they have sent it. The NHS app thing has not logged it.

Monday started my usual rescue of gentamicin and nitrofurantoin.

Monday took my Dad to hospital . Emergency eye stuff. Mum insisted on coming too. You should have seen me wheeling the two of them in. You could not make it up, Made sure I was near a loo. Pewks and poops. Bladder bonkers too. What’s new?

Got home eventually. Threw up. Shivering shaking went to bed. 

Tuesday dunno what happened. Felt crap. Oh yes GP reception rang said I was supposed to have asthma review by phone. OK I said. When? Today at 12.20 they replied. Hilarious. Why don’t they just read the clinic letters from Barts Severe Asthma/ difficult patient (!) clinic. I guess they get paid per asthmatic. Anyhow as ever patients just have to be near a phone at all times. Ready for that call. One way communication. Do as you are told. Wait for call. All day. Some pharmacist person rang me at 3.00. Asked me what inhalers I have. Since she prescribes them I am thinking she would know. Anyhow. I got through the questions. She even asked how many times I had been in hospital. Maybe I tried politely, to suggest, you could see the notes. I survived and she announced I had severe asthma. No shit Sherlock.

Wednesday oh yesterday. Got myself to London. Barts. For my monthly biologic injection. It takes 5 hours to get there and back. The appointment takes precisely one minute. They are supposed to monitor the patients for a while after. But never do. They are supposed to supply home injection kits. But never do.

I got home to pewk and poop. There I found an email from Jerome’s secretary. Results of sample from Sunday. Despite the crapness fully sensitive. ie I was doing the right thing, Albeit have no more gentamicin. GP supposed to prescribe it. But never does. GP actually argues with every request anyway. The senior partner has told me that in all her years experience she has never come across bespoke lab tests for samples and has never prescribed gentamicin. Consultants in tertiary care clearly in the wrong!

As ever I just forward the results to Mrs Micro. Nothing ever happens but the google prompt sometimes adds another email contact, as in one that has been important before. Must’ve done same this time. All of a sudden Mrs Micro sends me an email saying I have sent results to 24 people. that I do not need to send results. That I have an appointment in December so we can decide then if need iv antibiotics. I kind of lost it. Am I meant to wait til December with this infection crap? I actually do not have a face to face appointment in December anyway. I am meant to have monthly phone calls about uromune the trial vaccine I started in July. But no one ever does ring. The antibiotics can’t be in my system for long enough to work at the moment. But never mind December is not too far away. Oh…I forgot I do not have an appointment in December. Idiot.

Thursday is Pain Management Appointment by phone. Some new person rings. I answer the questions about my spinal implant. I get through it in 2 minutes. Next appointment is next year. At a time and date to be assigned by the clinic. I get 24 emails telling me I have a new letter a new message and and and in the patient portal Eric. I go on there. It says thank you for letting us care for you in our clinic today. I delete it. Turn it all off. and shut down the computer. Turn off my phone. arghhh.

It is all one way. It is up to the patient to sit quietly do as you’re told. Do not ask. Do not email. Do not ring. Just accept your fate. Be ready at a moment’s notice to accept calls and appointments. Do not moan. Just wait til December which never comes.