Paperwork has arrived!!!

A couple of days ago the paperwork finally arrived. For some reason it took almost 2 weeks but at least it's here. It is confirmed. I do believe it's actually gonna happen now!

Only thing....it states an expected stay of one night in hospital! That just doesn't sound enough, especially as I am only arriving at the hospital at 11.30am, so guessing my surgery isn't until the afternoon. How can I possibly go home less than 24 hours later!? ...as discharge time is between 9-10am.

Anyway, I emailed my consultant's PA just to check. She said that she was asked to provisionally book just one night but that it could be more. I explained my stress and that I couldn't be picked up on the Friday, as my partner would be at work, so she has booked 2 nights. She says it could still be more! 

At least this way I KNOW that I won't be pushed out and have no where to go or have no one at home! Phew!!

I was supposed to get a call from my consultant today, but despite having my phone beside me all day, still nothing and it's now 5pm!

I hope he calls. I really need to know so many things!!! 

Got a date!

It has been confirmed that my permanent stimulator operation will be Thursday 6th November.

I am pleased and anxious at the same time!

To finally have a date (which had better be the real thing) after such a long and gruelling wait it amazing. I will be able to potentially get on with my life, career and maybe never worry about how I will feel and if I will cope again.

BUT...I don't really want this! I've got no choice. At the moment this is my only option.

I am worried about where I will have the battery pack placed. I can cope with the scars, it's the battery protruding from my skin that I don't think I can cope with. I've seen photos of other people's and its nit what I want! I am intentionally on a calorie controlled diet now, so that I show how little space there is for a battery pack under my collar bone. I have got pretty muscly there too, since joining the gym, and believe it's just going to stick out even more because of that.

I am hoping to talk my consultant round to putting it elsewhere, as he is going to call me for a telephone consultation the week before the op. Fingers crossed!

So, in just 3 weeks time, I will (hopefully) be ready to go to hospital and become a cyborg (as so many of the children at school have already named me!) 

I just hope that this is all worth it it. That is gives me my life back and that the pain, dizziness and uncomfortable tightness eases and can be controlled. 

I am awaiting the paperwork, so that it really feels like it is going ahead. It should be here by the end of the week.

On a lighter note, some of the children on my class, acted out my operation at playtime today. They put me to sleep through a canula, cut me open, fed stick wires through and then sewed me up with neon yellow thread....apparently!! Made me smile and at least they are starting to understand. 

Educating the masses about ON has begun!!

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.