Monday, 23 March 2015

2, 4 - no six - or 8

It was precisely a week since I had my sub-areolar ductal tissue excision and the phone rang with a follow-up appointment.  No, not two weeks as the leaflet I was given at discharge says, No, not the four weeks that the surgeon quotes.  No, a whopping eight weeks of waiting.

I'm thinking that if anything untoward had been found they would have told me and that's why the eight weeks is nothing to worry about.  Ah, but then what if there are incredibly busy .....?

Poor old NHS - you are so awfully bad at looking after the emotional health of your patients.  Why do you not realise and why don't you do something about it?

Tuesday, 17 March 2015

Done and dusted

Friday 13th turned out OK.  I duly turned up late morning at the treatment centre, was admitted and eventually got to talk to the surgeon. She explained what she was going to do, that I wasn't going to lose sensation, that to all intents and purposes my nipple would look exactly the same afterwards.  In fact, talking to her I felt much less worried than I had been for the weeks leading up to this. Why on earth don't they give you the information to start with?

Coming round after the general anaesthetic I felt fine, no in pain at all, just a little discomfort.  I was transferred back to the ward: then obs, cup of tea and a rather insipid cheese and tomato sandwich.  Having been there a couple of hours or so I got fed up with being on a bed and not being able to bend my legs.  I was wearing those tight socks they give you to mitigate the chances of deep vein thrombosis but quite obviously to me, as I was on the verge of  cramp, I needed to get my legs moving. So I got out and sat on the chair.  After all, one of the leaflets I'd been given said that I'd have to do things for myself when on the ward, like going to the loo, etc. 

"You can get dressed now," said the nurse when she eventually got  back to me. 
"Don't you need to do obs first?" I asked. 
"No, you had those done when you went to the toilet." 
"I haven't been to the toilet," said I.
"But you're sitting in the chair."
"Yes, I got very uncomfortable and was about to get cramp on that bed."
"You shouldn't have got out without asking, that's what the bell's for."

It was only then, as she picked up my notes from the table, that I noticed concealed beneath them a large yellow notice telling me not to get out of bed until I'd been given permission!

Performing the discharge procedure and handing me a leaflet, the nurse then proceeded to give me a list of instructions while I tried desperately to make notes with pen and paper.
"Don't worry, it's all in the leaflet," she said.
It not all of it was. No surprises there of course. In fact the leaflet, nearly a year out-of-date, was the one that I should have been given right at the start as it referred to the sequence of events starting with the initial consultation. 

You have to love the NHS because it manages to do the job -  just.  What it seems to be hopeless at is effective communication. Time and time again I've uncover inadequacies, inaccuracies, inconsistencies and muddled information in NHS leaflets.

So what now? -  I expect you're asking.  Well, I have to wait about four weeks for the lab results of the tissue removed, that's according to the surgeon, or two weeks according to the leaflet!

Friday, 6 March 2015

Missing info

I waited about a week before chasing up the breast clinic because when I looked at the information I'd been given to bring home, I realised that - while I had loads of general information about day surgery procedures - I did not have so much as the name of the operation I am facing.  The appointment came by phone after about a week of no communication. It's Friday 13th - which doesn't worry me at all.  What does concern me is that even when I received the confirmation letter for the appointment it said no more than "breast surgery".

Eventually a copy letter from the consultant to my GP arrived. Now I'm not sure who I actually saw for the assessment, as someone else has signed the letter. It is broadly accurate.  What I don't understand is why when consultants write these letters they always contain a general health narrative, telling the GP things which are never quite correct but which -  in any case - the GP should know very well.  Most of the letter is a waste of time!

But at least I now have the name of what I'm facing. I am having a sub-areola ductal tissue excision.What I'd Googled was the right thing and online I was able to find answers to all the questions which I was not invited to ask at the hospital.  I am actually wondering if they will ever give me the opportunity.

There is clearly something missing in terms of information for women like me, who are inevitably worried they might have breast cancer. Have they forgotten to give me the info sheet? Other hospitals have them. I've found them online.

I feel a letter of helpful suggestions coming on - but I'll wait until after the procedure I think in case there's anything more to add to the catalogue of missing information.