Tuesday, 4 June 2013

Communication problems

I have been rather unhappy about the information given to me after my operation last week. Barked at me as it was just after I'd groggily come round from the archaic anesthesia.

I think it was this:

1. You have lots of endo but we didn't ablate and thus actually help you
2. You have a lot of scar tissue and adhesions from past operations (and possibly the endo? I'm unclear on this)
3. Your bowel is fused with something (possibly my womb?)
4. You probably have colitis
5. We will write to your GP within a vague and unspecified timeframe.
6. You won't see me again for two months.

And then she swept away in a cloud of self importance and hairspray.

So that's what I have to go on.

I was so concerned with the lack of ablation that the bowel thing, in all honesty, just confused me. I don't know what I'm meant to DO. No one has TOLD me what to do. I'm not a doctor but I'd say this is pretty necessary from a patient's point of view.

See, from my point of view, I've forced myself to the position where I'm lucky enough to not be cancelled and actually have the operation. And then they didn't help me and I'm now very confused about my diagnosis and what I should do next and I am, frankly, outraged that I don't get to see this woman for another EIGHT WEEKS.

So, yesterday, while trying to penetrate the fug of my brain and accompanying pain, I made some decisions. I found out that a private endometrial ablation will cost me around £5,000 through the Nuffield Hospital. BUPA don't even do it! Marvellous. You can get a nose job no bother, but not gynae stuff. Thanks BUPA. Anyway, that's my last resort for obvious - and skint - reasons.

Then I phoned the secretary of my consultant to demand an earlier appointment. She said that she hasn't had any notes or instructions from the consultant so can't do anything. I said: ask. She said: OK, I'll get back to you in a few days.

Then I went to my GP, not knowing what the hell else to do. She was nice to me but said that she can't do anything at all - not refer me to anyone, not prescribe me anything, nothing - because she hasn't received the notes/instructions of the consultant. I cried. Then I asked how long the notes normally take and she said around two weeks.

I went home and passed out.

Today I am still too ill to work, which is making me horrendously paranoid about my job and stressed that I'm letting people down etc, as well as freaking me out money wise as I have run out of statutory sick pay.

The consultant's secretary just phoned me and said the consultant refuses to see me for two months as 'there is no point until the bowel has been treated (or assessed - she wasn't clear on this)'. I said what are you talking about? I haven't been told to do anything, change anything, try anything to change my symptoms - I haven't been given any treatment or advice - so what does she mean? WHAT treatment is meant to be changing things?

She said that she 'hasn't actually spoken to the consultant because she's too busy - this is just what she emailed'. I said that being told that my bowel is fused to something and that I might have colitis isn't enough information for me to go on right now and can she go back and ask again.

She said it will take another few days.

I think what may have happened is the consultant has written with some information/instruction to my GP, who hasn't yet received it and therefore hasn't informed me? Could that be what's happening? Who knows? Definitely not me, that's for sure.

Kafka says that one of humanity's biggest fears is powerlessness. His book The Trial focuses on a protagonist - K - who is arrested without explanation, tried without explanation and can't get any help or information from anyone. He is never told what he has done and he is never told what will happen to him. He can change nothing and affect nothing. He is killed eventually, never having discovered what the fuck was going on.

I use the term 'Kafkaesque' frequently and facetiously.

This is the first time in my life that I have truly felt its horror.

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