Friday, 28 November 2014

A week post Cyborg...

I just haven't got my head round the fact that I need to take control of my implant yet!
It's still weird that I have got to select and choose what, when, how. So I basically haven't had it turned on as of yet! It's all just a bit too much to cope with. 
I can now feel where the leads are and where they have gone. It's most obvious at my neck and over my collarbone but I can feel it just going over the bottom of my ribs too. I can also feel the paddle part of the lead sitting at the base of my head. 
I am still dealing with the aftermath of the operation, such as getting little nerve twinges at the back of my head, pulling and aching from my head and chest incision and sore areas where the leads where tunnelled or are positioned. 
I am thinking that once I have the surgical staples removed, hopefully some of the discomfort will ease and then maybe I can focus on the benefits I will hopefully get from the implant.

I also am still having some issues with the numbness of my right ear. The top and bottom of the ear more or less feel normal but the middle of the outside is numb and also gets strange pulling pain. It's so annoying!! The area behind the ear when the lead is tunnelled is also the same. It doesn't help that that is where the dressing has to stick to cover the incision of my head. I am having trouble with this dressing as the different type is ensuring the blisters are drying up but it just doesn't stick for long! I am changing it every 2 days. 
And my hair is so's still caked in iodine and this is now pulling on my head at the back. Guess it's like dreadlocks!!! I've done my best to comb it out but really it needs a good wash, but with this dressing not being stick properly and do not waterproof, guess I'm gonna have to wait a while!! Grrrrrr!

Here are some new incision photos.....7 and 8 days on.

You can see this stomach incision is still very swollen and weird shaped. 
This is a photo looking upward so you can see the overhang at the top. I think that feels like my battery there, but hard to tell as its all very tender to touch!

Sunday, 23 November 2014

Incision photos

Here are some photos of my incisions.
First, is my back of head. This is 2 days post op.
I have developed a small blister at the bottom. Apparently this is due to the dressing used, so the nurse applied a slightly different and smaller one!

I also have still got a numb right ear and side of face but have been told the feeling will eventually come back. Think it is a bit more normal today but not back to normal.

Here is my chest incision, 3 days post op.
Not sure why they didn't use their drawn on line to make the incision but too late now. 
You can just make out the leads coming from my neck towards the incision.
It looks fine but I did get a sore patch on the edge of the dressing, so I've made sure that the new dressing is at a different angle.
You can see the sore patch at the bottom of the photo.

Here is my stomach incision, 3 days post op.
This is the only one I'm unhappy about at the moment, as it's weirdly indented. I'm hoping this is just because of swelling and the surgical staples pulling the skin in. 
It's more obvious in this photo....
Pretty unsightly at the moment!!

Also I am still being sick!!!! Yesterday I managed to eat quarter of a pizza but soon afterwards it all came back up! I was then too afraid to take the morphine I was given so went to bed just on paracetamol. To be honest, I had a decent night's sleep! I only woke up to change position. Slept from 12 until 9am!! :)

Friday, 21 November 2014

The date is here!!!

So at the hospital I was shown to my room and immediately everything was whirring...people in and out, getting things underway, non stop!
My consultant came in first, and explained a few things, drew marks on my scalp where my worst ON pain is, then on my tummy where the top of my jeans are and the bottom of my ribs. He explained he didn't want to put it too high up, because it would push against my ribs when I bend down. We also asked again why the date was changed...and now it makes much more sense. Apparently the kit needed for the implant hadn't all arrived and also other people having the same op that day all had to be cancelled. Therefore, it could never have been 6th November anyway!!!! Feel better knowing that.
Then the anaesthetist arrives. He talks me through his part and after I mention being sick after general anaesthetic when i had a tonsillectomy, he explains that he will give me some anti sickness drugs as I come round to avoid me being sick.
Then I give my food order, answer a thousand medical questions and am admitted by the nurse. I am secretly very happy when I have to tell her my weight!!! 12 stone 9 sounds good!! 

After all this I think that's it...but then Mike, the rep from St Jude's (the company that provide the stimulator implant) comes in the room. Not only would he be in theatre during the operation to ensure it all works as it should, but he spent at least half an hour showing me and my partner the battery, leads and charging kit!
This really was interesting, although was a lot to take it at this time! 
I was surprised at how rubbery and flexible to lead was and that each little metal square is a separate contact to create frequency from. The battery is really small and light! It made me feel educated and knowledgable enough to know what was going to happen and what everything feels like, as well as looks like!
I wish I had shown something for scale in this photo, but the battery is about the size of a small matchbox but not as thick!

At 2.15pm I am collected to go down to theatre. And so the next chapter begins....

Operation complete

It's all over!!!
I actually made it...finally. The op is done and I now have my stimulator implanted.
I have to say the first day was rough!!!
After coming round in recovery, apparently I was in theatre for about an hour and a half, I was in so much pain from my abdomen! Every breathe was hard and I was moaning in pain. I maxed out the amount of morpheme they could give me (16mg, I think) and eventually it settled and I could cope! But the problem then was that I felt sick. I mentioned this in recovery but as I'd already been in there for 2 hours, I think they just wanted me back upstairs in my room! 
I was glad to see my partner again but being sick hurt sooooo much! I had no sick bowl though, so ended up being sick in a carrier bag, with my boyfriend running around trying to find a nurse to get a bowl! But then I used all of those and my boyfriend had to rinse them out so I could continue being sick. Disgusting!! 
Sadly this continued so I didn't get to eat anything!! 
The anti sickness drug they gave me made me ultra dizzy, which was horrid!

The worst part though was getting up to go to the toilet!! Wow!! I couldn't even stand up straight, so shuffled, bent over like an old woman. Then struggled to sit down on the loo!!

Later on I was made to eat some bread & butter so that I could take ibuprofen. I immediately was sick after going to the toilet. Horrid! 
After an appealing night's sleep (think I only got 2 hours in one chunk) I woke to a different painkiller, oramorph, that seems to work for me! I managed breakfast and so feel a lot more myself. 

Then the St Jude's rep visited to set up my frequency programs.
This was so interesting! It's all working well and the middle of the lead seems to give the best results, which is what would be hoped for. 
I held the wand, which was attached to the control and his PDA so that he could change the intensity and frequencies to find what works best and gives the best coverage. Apparently I seem to prefer high banded frequencies, where the feeling holds for longer and is therefore slower.
I now have 5 frequencies set now, so I can try there over the next 6-8 weeks and see what works and what I like most etc.

This morning, I have also even managed to shower my bottom half, as have dressings everywhere else, and change into pyjamas! 
Feeling a lot better!! 

Monday, 17 November 2014

Seems like it's going ahead...this time!!

I am now getting to the last few days before the op, so am getting things prepared and doing things for the last time before I become a 'cyborg'! 

So went to the gym for the last time today! Am now at my fittest, slimmest and most toned am a bit annoyed that I know I'm going to lose some of this hard work and have to get to this point again once I've recovered! 

I have also booked a haircut for Wednesday (day before the op) so that I know my hair is in good condition and won't need cutting for a whole afterqard, so I have time to heal! Also my lovely hairdresser has left, so am checking out a new one and filing her in on my op....and shaved hair nightmare!!!

I am starting to pack my bag and think what I need to take or have done before I go into hospital! 
It's all a bit surreal but I don't think it will truly hit me into I've actually had it done and by then I'll just have to cope with the aftermath!!!

Tuesday, 4 November 2014

New date = 20th November :(

After speaking to my consultant's PA yesterday, it seems that an urgent private patient has priority and so my operation has to change.
She has no idea about it until that morning, so doesn't know how a letter has got to me without her knowing first. Either way she was as annoyed as me! 
I asked how likely it is that this new date will also change, because I'll get bumped along once again, but she ensured me that she will not let it happen to me again.
I will now definitely be unable to do a few things that are planned early December, as there's no way I'll be ready to travel anywhere by that point! I just hope it doesn't ruin my Christmas too!!!!

So.....2 weeks to go then....seems like a long way off now :(

Sunday, 2 November 2014

Really....??? What else can possibly go wrong???

So I have arrived back from a really chilled weekend away at a spa hotel, to prepare me for my operation and to have some quality time with my find a letter from the hospital changing my operation date!!!!!!!!!!
I am soooo stressed and angry that I don't know how to cope with all this. It may sound silly but I have everything sorted, from clearing the freezer to planning when to take nail varnish off & wash hair etc. Not only that, it will mess up all the forward planning to ensure my class at school have as little disruption as possible. 
Obviously I am going to call up first thing in the morning to find out why this has happened and if I can still go with 6th November, but I just don't know what to do for the best!! 
I know these things happen, and there will be plenty of people who will say it has also happened to them, but it's already happened to me once....why again??!