Maybe got a date!

Although it wasn't the next day, I have finally heard from my consultant's PA at the Spire hospital.

She has given me two dates and apparently one will be the date I have the permanent stimulator. So could be 6th November or 20th November!!

Seems strange to be given a potential date. It doesn't feel real. I've not got any nerves or any feelings about it. Guess it's not going to feel real until I see it on paper and I get some more information about the operation. 

If it is November, then I suppose it's not too far away. Am hoping I get the nearer date, as it's less than a month & with half term at the end of October, I might just manage to stay in work until the op. Another 2 weeks on from that is just that bit too long.

I guess I will just have to see what happens from now. I have been very patient but it is running very thin right now!!! 

Is it really true??

It seems I might FINALLY be getting somewhere!

I spent all of last week phoning the NHS secretary for my consultant to try and get a copy of the funding letter and to see if they know anymore than his PA at the Spire hospital, where I was told the operation would happen. I left message after message and finally spoke to her on Friday!!

She said that this is no letter about funding, as funding doesn't need to be approved. Once it's been put through by my consultant, it will go ahead!! 

Ok...that's great news!!

Then she said that she had already emailed the Spire hospital and they were compiling a list of people who need the same operation, so we can all be done in one block to make it easier to availability for the stimulator rep that also needs to be there.

I then emailed the PA at the Spire and she advised me that I am on the urgent list to be done by the end of November! 

I feel relieved that I kind of know a date and am no longer being ignored because of lack of information.

Apparently I will hear from her again tomorrow, to hopefully get an exact date organised! Fingers crossed!!

Time is running out!!

I have finally cracked....and have had to take the day off work.

The pain has been building and getting worse, particularly over the past week, but now it's pretty constant high level pain with dizziness, whatever I seem to be doing!

My head feels so heavy and just walking makes it pound more. I have found myself having to breathe deeply (like you do when you feel sick) to help me with physical movements. 

I put off getting out of bed this morning because I knew the pain would only be worse.

I have been phoning my consultant's NHS secretary every day this week, but despite leaving a message every time, and emailing, I have had no response. All I want is to know how long I have to wait. Although I'm not sure I will be able to wait too long!

Yet another September with no idea if I'll make it!

So, here is another September, the start of a new school year, when the worry sets in about whether I will make it through this year. 

To be honest, it's more like will I make it through this term!! 

Last year was different, I had support in that I shared my class and I had one day out the classroom doing other educational work. BUT this year that has been taken away, despite the fact that I am in the same position as I was a year ago.....waiting for the permanent stimulator.

The two years before that though were truly difficult. I only just made it to the end of September both years. I had temporary operation after temporary operation but it meant I had about half the year out of work.

I really don't want that to be my future this year!! I NEED that operation to save my career and sanity!

Already, since the summer, my pain has increased. It is still up and down but the highest levels are much more often and much more painful than there were during my holidays.

Today I experienced my first dizzy spell whilst teaching. I know I can almost manage to ensure the children don't really notice but I know this is just the start. I've been back at work for 6 days!!!

This is utterly ridiculous :(

The continuous wait......

I haven't updated my blog for a while, because I basically have no idea WHAT is going on!!!
Since the cancellation of my stimulator implant surgery, it has been extremely difficult to get any straight answers from anyone.
All I know is;
* I should get the operation in 2014 at some point
* They still haven't got in contact with the representatives from St Jude's, so can't plan a proposed date, in case it changes.

I realised the other day, that I haven't had any operations to help me through since November 2013!!!
Mainly because I was constantly waiting for the date for the implant and so was working toward a date constantly. That helped me get through the hard times, as I would think I only had X amount of weeks to get through BUT it actually now means that I can't really think about a temporary option as the date for the permanent may come up and I need to know how I am feeling from it, without any pain relief blocking it's benefits.

Honestly, I can't believe I've been left this long within being told anything!!!!!!

In the mean time, I have found that going to the gym and actually working my muscles is helping somewhat. I feel less intense pain, far less often. It's only been a couple of months of going, but am pleased I have found something to help me through this long wait.

Why me...?!

I can't actually believe it!!!

Why do bad things always happen to me!!! The worst thing is I knew something was up but it was out of my control to truly know, or do, anything about it!!

Although today....right now....I should be having the operation I have been waiting years for, it turns out that 5.30pm yesterday was when I was told there had been a mix up at the hospital!

It seems that because the NHS approved the funding for the stimulator implant at the same time that we were trying to get it approved by BUPA (who decided I had to have another radio frequency procedure before they would approve the stimulator) ...then my consultant and his PA have got confused. They were planning different operations; Mr Patel thought we were doing the PRF but his PA thought we were using the NHS funding to go ahead with the stimulator. It appears that they didn't realise they were thinking different things until late yesterday!! Great, thanks so much!!

Anyway, I have refused to go into today for the PFR as it is a complete waste of time and just holding off the inevitable. It was offered that I could go in today for the PFR and then in a few weeks time plan a date for the stimulator.....WHAT'S THE POINT???!!!!!! I just want the stimulator!

So, my consultant's PA said that after my phone call with Mr Patel today, we will try and sort a new date for the stimulator within the next two weeks. 

I guess we will see about that! With my luck, I bet that's not the case!! 

After thinking about this situation, it seems rather odd to me! 

I was in constant contact with Mr Patel's PA. After sending in all those questions, she said he had my case file and she would get it back and send on the answers. Surely, he would have realised something was up after me asking those questions. My emails were titled 'stimulator implant' and as we had NHS funding, why put it off!? As Mr Patel knew my feelings about having to repeat the PFR, and apparently he agreed, then why would we go forward with that!!!??? 

Maybe, they made an error and hadn't done things that should have been done and so are covering up for that!

I've had no paperwork, for PFR or stimulator, so it just seems odd. 

I knew something was wrong when I didn't get anything in the post, or have a pre op etc....but still, I got my hopes up, I planned everything, I organised things at work, explained my op to my class of 7-8 year olds. 

I don't know where it all goes from here!! 

I guess I'll see what happens from this phone call today!! That is, if I actually get the phone call!! 

Update: 

So, it is now past 8pm and what a surprise.....no phone calls all day!

Obviously I am of very little importance and my health and future means nothing!!!

How special do I feel right now!!! 😞 

Update #2:

After having to wait ALL weekend to be able to hear something from the hospital, I phoned this morning to find out thatmy consultant's PA was not at work today! I spoke to someone else about the situation, who assured me that she would see what she could do and call me back in the afternoon.

Surprise, surprise, I've heard nothing! I tried calling but no one would answer! Honestly.....I have no idea what to do, or how to cope with this anymore!!!!!!

😩😠😟

Is it really going to happen!??

There's only 4 days until 6th June 'Cyborg Day' but I still haven't got any paperwork confirming the op OR the answers back to all of my questions.

Craziness!!

It's starting to stress me out....am I actually getting my operation!?