Wednesday, 29 October 2014

Answers to my questions....

My consultant called late yesterday evening and I have now had chance to ask some of the many questions I have about the stimulator surgery.
I only asked the most pressing questions, as I felt I would seem utterly crazy if I asked every single one. Some i will just find out when he discusses the surgery and recovery next Thursday on my surgery day.
Question #1
Do I have a choice where the battery is placed?
I explained that I don't think I can cope with it in my chest/clavicle area, and after losing almost 2 stone and putting on a lot of muscle, I felt I don't have any space there anyway! 
He agreed and suggested having the battery in the abdomen. I am happy with that, as it can be covered with clothes and won't be so bad if it does stick out slightly. He says he will need to get an extension was to do it, but it won't be a problem. 
Yay! So glad I have got past that issue.

Question #2
Will I be under sedation of general anaesthetic for the surgery?
I will be under general the whole time.
That's good with me, as I just didn't want to be under sedation for the whole thing. Although I must make sure I mention that I had a reaction to it when I had my tonsils out in Febuary. 

Question #3
Will my hair need to be shaved?
Apparently he will need to shave a small area just behind the ear!!!
Aaaaasahhhh! No way! Don't think I expected that. I know my hair will cover it and it won't be a total undercut but I really don't want to spend years regrowing my hair. I've spent long enough getting it to the length it is now! 

Question #4
How long is the stay in hospital?
Just out of interest I wanted to see what he said about this...he said 1 night. Well, I just moved on from that as I know that I'm in 2 nights now anyway.

Question #5
How long will I need off work for recovery?
He said usually 2-4 weeks. I reminded him that I was a primary school teacher and that I can't do less than 100% of my job when I am there. He said I could take a month off!
I know he ALWAYS under estimates the time I need off work to be able to work at 100 miles an hour with 30 kids all day I'm looking at after Christmas realistically, I guess. I will definitely need a phased return too tho, as I can't contemplate going from this to a 50-60 hour week. 

Overall I'm soooooo glad that he called to be able to answer these most pressing questions. I feel that I can now prepare myself for the operation, knowing the things I NEED to know! I know most seem to be about vanity and how I will look, but I need to live with this! 

So, now it's onto planning the shopping and ensuring there will be things in the fridge/freezer that can just be put in the oven, as I'm not going to be cooking for a while. I am also making a delicious cake and freezing it, so that it can just be defrosted and the buttercream put in the middle. So when I am home after being in hospital....voila....instant cake!! And cake makes me happy!!!!! 

Tuesday, 28 October 2014

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 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!? 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!!! 

Wednesday, 15 October 2014

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!!

Wednesday, 8 October 2014

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!!! 

Thursday, 2 October 2014

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!!