Day 2 - getting programmed

After barely having any sleep and giving into having strong pain killers overnight (10mg of oramorph) I was still in a massive amount of pain. I was barely going to the toilet but when I did I still needed someone to help me get out of the bed.

I had a little bit of toast that morning, as it was the easiest thing to feed to myself whilst lying down. Even sitting up using the bed to support me was too much. My right shoulder/arm is having to be rested against a pillow to support it from falling back too far. I eventually had to double the dose of oramorph to try and get past the amount of pain I was in!

The nurse still check checking the strength in my grip and pushing of my feet. I was so sure that I gripped her hands really strong, but she seemed to suggest that I still had weakness to the right side. Surely that is because my chest hurts and that muscle is tensed when I grip her hands!!!!!

During the morning the wards got changed round and the ladies all went to the men's side, as there were more of us. They also needed to make space for the day patients coming in to use the day unit. 

Later on that morning, Mike from St Jude's, came to see me to get my stimulator switched on. It was nice to see a face I knew and I got to quiz him about what the equipment taken out was like. He said the battery was pretty grim and covered with a gross amount of tissue. He likened it to an episode of Dr Who he had seen once, where silicon stuff grew on everything it touched!! This made me laugh. I like the gorey details! 

After forgetting the my battery was no longer in my abdomen and finding the precise place to put the wand, we got it all connected and began to set some programs. He explained how the new burst programs work, where the frequency is working but without me feeling the sensations. However, to set them up I have to be able to feel them to say how they feel. So I've got 5 programs. Two are normal 'tonic' settings and then he has created a 'burst' setting to match each of these. He has also created a program that uses both leads at the same time but on the burst setting.  We turned the stimulator off for now, as it obviously needs chance to settle. 

Mike discussed how he feels having both leads should give us more chance to find the right settings to help me, especially due to the fact that I unusually have to work on such low frequencies. Even when creating the programs he noted how the intense feeling came in so quickly to me compared to other patients. He did also say he remembers my consultant stating how little fascia fat I had in my neck, meaning there isn't any way to put the lead any further back off the nerve. 

He also mentioned how unsupportive my work seem to be, as I apologising for having to contact him about recovery time previously. This seems to be a recurring factor! It's so screamingly obvious! 

Mike explained that I would see him again in about 4 weeks time and then went over to see 'Chloe', who had had the same surgery but for Cluster headaches. I could hear him saying thugs I had said to him to reassure her, such as how much more painful this time round was etc. 

It was interesting to hear that when she was being programmed she described things very similarly to how I do. 

At this time I realised that I do have a positive attitude towards all this. I don't seem to panic about what has happened or how it is. Comparing myself to someone in a similar boat, I am strong and laid back and taking things as they come. This made my feel more like I am in control.

The rest of the day kind of passed by. I asked a nurse to help me change into my pjs, as the gown is so irritating. She was great and did so whilst I lay down. 

Chloe came over to chat to me. For both of us, it was refreshing to discuss our conditions, the surgery and the hospital. She was definitely a worrier and I ended up being her reassurance and support but that felt good. She mentioned that her chest battery had not secured in place for her very first surgery and she had to have revision before this, as her third, stimulator surgery. She also said that our consultant had learnt that making a deeper pocket for it was better, so I'm hoping that is the case for me too.

Here are a few photos. Nothing much to see, as they have kept it all completely covered up.

I had a few visitors later that day, which really helped as I was beginning to feel pretty dizzy and a bit sick. I barely ate any tea but then I had just had a hot chocolate from Costa! Mmmmmm!

I didn't get much sleep but the fuzzy feeling didn't really subside. 

I didn't really think much of it and still hoped I was doing ok. 

Tomorrow......😳

The date has arrived and has truly felt like a looooonnnng time coming. Can't believe I have actually made it through a term of work as well as everything else to be able to get to this point.

I have spent half term seeing as many friends and family as possible and spending time quality time in the sun, before I am cooped up inside for the longest time.

I have also enjoyed a little bit of wedding planning, looking at venues, discussing this with my fiancé and even getting my dress!!! 👰🏽 We did initially think maybe October to get married so I was using the time I don't have sore wounds etc to get this part sorted and ready. However we are thinking now it is better to have longer to prepare and less rush for me to recover from this, knowing how long it took last time. Then the pressure is off. Anyway, with the dress sorted it feels real and gives me something exciting to focus on and look forward to.

It is 9.15pm so in 13 hours I will be at the hospital begin prepared for me operation and discuijng the surgery. I need to make sure that I make it clear that although I am having to make the decision to have the battery placed in my chest, I want to pushed further down, apparently in a pocket (as the pre op nurse suggested) so that it is less visible as it will be less close to the surface. 

I am nervous about the surgery but more about the after effects that it leaves me with. Being sick when your stomach muscles have been messed with on the inside is not fun! I am presuming that this area will hurt more as they are taking about the battery and wires and the parts that have scarred in place will need cutting out. This seems worse than pushing them through to me.

I also don't really know if they will be needing to cut my hair again to add another/replace the lead. And I really hope they cut out the lumpy part of my chest scar when they put the battery there!

I feel that I don't have all these answers and won't until tomorrow. I hate that! I am sure it saves them time as they haven't had to create a further appointment to discuss these things but for me it means I don't know the plan fully until I get there. I don't like this kind of surprise!

I also need to make sure that I just keep remembering what the pre op nurse said about not being discharged from hospital until I feel ready. And if I am still feeling sick then I am not ready to go home! I guess as my fiancé will be at work, then I can't spend the day alone after an operation like that. That should then mean I am not pushed out and sent home without feeling ready.

Now I am packed (I think) and ready to go. I know the morning will drag, as I am bound to wake early and then by brain will go into thinking overdrive, so I will stay wide awake! 

So....wish me luck!

Of course I will update with photos and details when I can.

Operation is in sight....

It's been a roller coaster of plans and reorganisation recently but finally I think I have a date that will actually go ahead to have my stimulator implant taken out and a new type reimplanted.

Initially I was given the 23rd May as my date. It then needed my pre op to be checked that I was ok to have the op. Then the next delay was waiting to see if Mike, the rep from St Judes, was available to attend on that date. In the end I emailed him to see if he was free. He said he was booked in! 

Then the next thing I hear is that I have been bumped and someone else needs my surgery time for a more urgent issue. I understand but it is so frustrating. It's like I wasn't to have that date anyway as I had no paperwork and it was as if they were finding all sorts of things to delay getting it finalised.

Anyway, I have now got the paperwork and go ahead for 6th June. Phew! Feels more real now.

In a way this date is better as I get my half term before the op, meaning I have a week off work to get my head around it all and prepare myself for the surgery.

Today I told my work about this date and created plan to return for a day or half day at the end of term, so that I don't go over the attendance triggers. Hopefully this will be manageable, as I will know that I won't be going back for a while as I will have the summer holidays to continue my recovery. A day or half day at the end of the school year won't be much either. DVD. Party. Goodbye assembly. I think I can cope with that to ensure I don't have to have a formal meeting and chance losing my job.

It's so wrong that I have to play it this way, but that goes to show how inconsiderate the workplace is for long term health conditions. So little understanding and huge lack of empathy to ensure I am looked after properly.

At the moment I am in huge levels of pain. The last 2 days have been worse than the have been for a long time. I have been extremely dizzy and had to stop in the middle of lessons. The pain is so bad I have no patience and lose my concentration and temper a lot easier. Then this makes it all worse too. Nothing has helped so I just have to get through the pain. I can't take time off work now, as I can't have any days off as they will then count towards by attendance and then I will trigger the formal meeting earlier! I don't want that. My recovery from the op is more important right now.

So....6 more days of work before the op. That's how I am seeing it. That's how I'm going to get through it.

Found a decent GP at last!!

I never used to go to the doctors for much. I never needed to. But for the past almost 8 years, I have gone more times than I can count!

Most GPs have sadly been utterly useless and a waste of my time. Many stating that they just don't know about or understand my condition. Some getting annoyed with me. Others think I'm wasting their time.

But this one....she listened and despite the 10 minutes you are allocated did what she could in that time.

I had chosen to see her as she was young and am guessing new to the profession. I therefore hoped that meant enthusiastic and thorough. I think I got it right!!

I explained the problems I have been having with worsened pain and little support at work, and mentioned the days I've had to have off recently. Of course I said that my consultant had advised that I go part time temporarily.

I explained that I didn't want to do this so close to the end of term. Annoyingly she showed me that you can not forward date a sick more, yet she then offered to write a letter!! I was astounded! I have never felt so thought about and with clear understanding of my needs. She wrote a letter explaining that I will be getting a reduced hours medical certificate in the autumn term and that this will reduce my days to 3 instead of 5 and that this should be at the start of the week. 

She did say that they do not have to follow the recommendation for which days, but she added it to help me out. 

I also asked her to check my chest scar. She said it was unusual but within the 'normal perimeters'. She advised keeping it moisturised and agreed oil is probably best. So I will continue with the rose hip oil. Basically, she thinks it will go durn and stop being so itchy and sensitive over time but to come back to see her if no change by November (one year after the operation).

I will definitely go back to see her in September for the sick note! And she will now be the doctor I ask for! 

Follow up appointment

Today I had an appointment with the pain management doctor at the Pain Clinic. I was expecting this to be discussing my pain levels and a check up of my incision sites.

Well I have to say, it was the oddest of hospital appointments ever!!

After waiting 30 minutes, a lady collected me and introduced herself as Lucy, another of the pain doctors. She questioned that I have an appointment with my consultant tomorrow as well, and when I confirmed this she says he was also here today. Now I didn't realise this at all! 

I entered the room and there was Mr Patel and Dr Love-Jones, the pain management doctor I was supposed to be seeing, or so the letter had stated. (Also she has been my anaesthetist quite a few times).

So they basically started asking me questions about how I now felt, if I was glad I had had the surgery, what percentage did I think the pain had improved, whilst making notes about what I was replying.

I mentioned that I had noticed a pattern with some of my worst pain episodes, and that they link with my periods. Dr Love-Jones said that is fairly common. We discussed having less breaks between packs of contraceptive pills. She also suggested leaving the stim on overnight so that maybe it will help not have the worse days as often. 

I said that I felt it had improved my pain by 60-70% as every day is great but the worse days can't be controlled by the stimulator, although these episodes are less often than they used to be. Mr Patel said that I would be meeting with Mike, the St Jude's rep, in the appointment tomorrow and that I obviously need some new programmes for those times. 

He also asked about if I had got back into my fitness and how the wires that has been moved were. He was really happy that I was back at the gym and that the wires were now settling back into place. 

Dr Love-Jones asked about what causes the worse pain episodes, to which I explained it seems to be tiredness and stress which is what my job is all the time! Mr Patel mentioned that is had many phases returns to work. I said that I was hopeful that I would get to full time but that I was considering part time, as now I've had this operation I can see what I can manage longer term, and he thought that was a good idea and that the implant wasn't going to fully improve my life!

I also mentioned about the change in the feeling if my right ear and that it is almost painful when hair or anything touches it. Mr Patel thought that this should return to normal within about 6 months. 

I showed them my chest scar and explained about the sensitivity and pain and that I had been using the Haelan tape. Dr Love-Jones suggested not using it anymore and if in 6 months to a year it was still painful, then maybe silicon gel (that plastic surgeons use) may be helpful. Mr Patel suggested using caipsin (the chilli stuff) to help distract from the pain. I've got tiger balm still from many years ago, so maybe I'll try that!!

Mr Patel also said that I have become very sensitive and sensitised which is common for people who suffer from chronic pain apparently. So the extra things I am dealing with are because of this over sensitivity.

And that was it!!!!!!!!!

No one checked on my scars at all!

So I'm guessing it was a chance for them all to find out how it has worked for future reference. I guess I'm a bit of a guinea pig and they are keeping notes on how it's good and if it's worth it for others. 

I don't mind at all ....but it would be nice to know what was going on. 

Update on my scars

I've been meaning to do an update on how my scars are doing and what they look like over 3 months after the surgery. 

My head scar looks pretty much the same, as it healed pretty quickly and neatly. I think the loop of extra wire is now more obvious than it was, as all swelling has gone now.

My hair has now got to an annoying half stage, which it's too long to be unnoticed but too short to pin up or wear within my ponytail!

My chest scar is still very lumpy (well, half of it) and the sensitivity is still high when brushing on clothes or if my hair touches it. 

I have now used the Haelen tape for about a month but I can't see any improvement or difference in how it looks at all. It is still just as raised, just as red and shiny and just as sensitive. 

Immediately after taking the tape off, the scar does seem flatter and the skin around it is paler, almost white! This calms down overnight but then the scar raises back up again too. Sometimes whilst wearing the tape, the area become very itchy and the tape seems to pull on the area. At most it seems to helping with clothes touching it during the day, but there are times when I feel it needs to have a rest and so I leave it open for the day, with just some rosehip oil applied. 

My stomach scar is just becoming less purple and healing well. It is straighter than it was and does not seem to be wonky or puckered! Even though I am not back at the gym properly and losing weight again, this does not seem to affecting the scar's look or shape.

Reprogramming my implant

Just felt like it's time to give an update on how things are as well as to share how the reprogramming of my implant went.

In terms of the actually surgery, I am getting there now, I believe. I am gradually building up stamina and getting strength back but I am more or less able to do what I usually would do, just with a slight stiffness and uncomfortable feeling in my neck when I look sharp right, and if I bring my new to my chest or bend over far, then I can feel the battery pack pressing into me. 

The thing I am most worried about is the dizziness I am getting. I am sure it is more often and more severe than before the operation, as I get it every time I bend over or get up quickly.

I have begun training back at the gym, but my personal trainer guy won't let me do anything that means bending over or putting my head down (which seems spot on) so I've only really used the stepper, treadmill and weight machines. Not what is like to be doing ideally, but it's better than sitting about doing nothing and it meant I have begun to care about my diet again too!

Although I had been chasing the pain clinic to arrange an appointment to meet Mike from St Jude's Medical again, after Christmas and new year were over it was relatively easy. I saw him last week and after I described how the programs were pinchy and I could only used one, he had a look and agreed that they would feel like that as they were fairly strong. So at least I feel like I do know how things should feel, without feeling like I know anything at all about how this all works. 

Mike said that probably my lead is very close to my nerve, which makes me very sensitive to the stimulation, so therefore I can only cope with low frequencies. Most people have 4mhtz but I am working between 1.2 and 1.4!!!!

He set up 5 more programs that seem to work further up my neck and towards my ear and therefore aren't causing the muscle to spasm which is what the pressure feeling was. 

He did say to leave my stim off for a little bit as I was very zapped for an hour during the reprogramming. I actually suffered a headache for a day or two after the appointment, so that's something I'll have to remember from now on! 

I tried out the new programs two days later but none of them particularly felt normal enough yet to leave on for any length of time. I then found it extremely difficult to get back in the routine of turning my stim on in the morning, as I felt like it would take a while to get the setting right, so I put it off for a week. I feel bad that I left it so long, so as I haven't had much benefit from it yet, I just don't feel reliant on it. I guess these things take time and I am going to take time to figure all the out!! 

My next venture of going on holiday!!! It will be my chance to see what happens at airport security and how I cope with the implant whist away from home. I'm not particularly worried, as feel I need this time away to relax and chill in the sun to aid my recovery and well being.

It will also make sure I get over showing my scars freely to people I don't know! To be honest, I'm not as worried about that as I thought I would be. 

I'll update when I get back!

Getting there

It's now been a month since my operation and the scars are healing well.

My stomach scar is looking less and less odd so I'm hoping it will sort itself out fully in time. It is still very tender and I can't do up trousers properly as the waist band is on top of this area. The odd twisty feeling I get when standing or sitting up is now getting less.

My chest scar has always looked good but is still pretty tender and the muscle underneath is still fairly sore.

My head scar is still raised but the actual scar is barely noticeable! The skin on the raised area and to the right, up to behind my ear, is still partially numb and doesn't have normal feeling. 

I now turn the stimulator on when I wake up and turn it off when I go to bed. I do intend to try it overnight to see if I sleep better, as I am struggling to get to sleep and sleep all the way through the night at the moment. 

The turned up version of the 3rd program setting is now not pinching and feels fine. I can feel it more constantly now but not in annoying way. 

I guess I should now give the other programs a go now to see how I feel about them now that they might not be so pinchy!!

I am now switched on....

The past 3 days I have finally had the courage to turn the implant on!

It's strange but not horrid. 

The first program I used, number 3, I seemed to get used to within a few minutes, so I turned it up, but then couldn't feel that after a little either. Strangely though, I could feel it more if I tilted my head to the right, rested my head against the sofa or the oddest one, had the wand and remote connected to the battery! 

Today I tried a different program, number 5, but within a coule of minutes I had to change it, as it was too sharp despite being on the lowest level. I changed it to program 4, which is a more 'tappy' but again I have got used to over a short while and then barely feel it.

I am not sure yet how well it is helping with the ON pain, as with all the other pain and recovery, I don't know that I'm experiencing higher levelled ON pain . And the lower level constant pain I feel seems masked by the stiffness and surgery discomfort that I am still feeling.

The incisions though are looking a lot better. The chest one looks amazing and I can tell will eventually be barely noticeable. The one at the back of my head is still raised but is neat and I still have numbness between it and my war. My stomach incision is neat but still puckered and odd shaped. It might be getting slightly better but it's hard to tell' 

Chest

Head

Stomach

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!! :)

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....

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 long....so 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!!!!! 

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 :(

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!?