Friday 16 October 2015

Waste of time :/

After building myself up to the telephone consultation...writing down notes of what I needed to say...and thinking that I would know the next steps on this ridiculous, long winded, repetitive journey behind, it was all a complete waste of time!

If it wasn't stressful enough to try and arrange cover for my class, make sure they actually turned up, then run around grabbing my belongings to be able to get to my car to have phone signal and some privacy to be able to take the call, it turns out a 45 minute wait is perfectly acceptable!!!!!
I basically waited in my car for 35 minutes before I phoned my consultant's secretary, but I had to leave a message. Being a teacher, I had to go back in to have lunch to allow me enough time to also have everything ready got the afternoon. Whilst sat eating my lunch, they phone and I have to answer the call in a cupboard, to ensure I'm not interrupted!!!
Frustratingly it wasn't MY consultant phoning, but a member of his team AND it turns out to just be a follow up on how the permanent stim is going!
Biting my tongue, I explain that I'm having trouble with the battery moving still and yes, I did try the abdominal belt. I explain that Mike from St Jude's has said there may not be many more settings available to me either and that these aren't helping the worst pain at all, and that these are happening more often. I add in extra bits about the wire stabbing, he suffers it's scar tissue but would need to be seen.
He asks out my work asking for some questions to be answered and how supportive are they, so I reply honestly that they aren't supportive and refuse a lot of reasonable adjustments that are requested.
He also asks if I wanted a telephone consultation. When I say no, he states that it would be best, with what I've said about work and the issues, if I came into see Mr Patel himself.
YES!! That's what I would have expected before now!

A couple of hours later, his secretary calls to make an appointment for 4th November to see him at the hospital. 

So I guess making any plans is again on hold but just for a little bit longer!! I truly hope I get some answers next time. I need this trauma to get sorted the best it can so that I can somehow deal with it and move forward

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