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.

Plan after plan

It seems that I am continually making plans for how I will cope with work, the wait for the operation and the stress in my life. 

I have lost count at how many different plans I have concocted and then revamped, altered, pushed aside, but here I am. I am still at work. I've made 3 weeks so far but all that is keeping me going in the fact that there can't be long left until my operation. I am enjoying some aspects of being back at work, seeing all my old classes. They honestly have missed me and it truly shows with all the smiles, hugs and lovely conversations. The same can be said for the parents too.

Then there is the added stress that is coming from above at work. I have recently been issued a formal warning for my attendance as I hit two of the three triggers. This lead to a formal meeting where some adjustments have been put in place and it gave me the chance to fully explain my condition and the surgery. However, it is still clear that some adjustments are not being stuck to by members of staff who obviously don't feel they are important enough. 

Within all this, I am experiencing a lot more discomfort from my wire and battery sites. They pull and hurt when I stretch or carry heavy items, like shopping bags. It feels like a constant bruise over my ribs.

You can now clearly see the battery as it has been pushed so far forward and it now flips really easily if I forget to hold my hand there when I bend down or forwards. 

Here are a few more updates photos, perhaps the last ones before my next surgery. 

Here you can see the extension connection of the wires below my still red and raised scar on my chest. 

I am hoping they will cut this part out when they cut it back open again, as that is where I've decided is best to have the battery to avoid the same issues with the wire. I would like it quite far down though so it isn't where I have no extra flesh to conceal it. 

You can now see the wire path much more clearly than ever before. Losing weight has caused this issue. It has also left me with no body fat over my ribs, so my bra now runs on the wire. Which is very uncomfortable. 

The loop of excess wire at the back of my head is much more prominent now. It itches still and protrudes a lot, making it even harder to scratch. 

So now all I need is this operation. So many added issues will be resolved, but I truly hope the head pain can get under control this time round. 

I have plans to help me cope with work and the stress. I have plans to move forward with my own life. I just need this to work out as hoped so that I don't have to create any more plans that revolve around unexpected surgery. 

Back to work!!!!

It's only day 2 of being back at work and already I know I can't manage!!!!

I even woke up with head pain this morning and that rarely happens. My head has continued to build in intensity and pressure all day and I literally can't stop the pain, no matter what I do.

I have caused such a scene at work, refusing to teach certain age groups and getting things made as manageable as the role can be....so I need to try and do as much as I can.

I think when I get an operation date, then I will feel like it's actually happening and I can begin to plan how I will make it to that date and what I can cope with having had that worry eased a bit.

UPDATE: 19th April 2016

So I've been back for a week and a half and I thought the pain and panic was beginning to settle and ease. The dull constant head pain is lower but this evening I have had a terrible sharp pressure pain at the top of my neck when I bend my head forwards. 

I can only put this down to the amount I would use this position of my head at work, talking to young children.

I have also had really sharp almost continuous pain around the battery area once again. It has been like this the past 2 days and is really uncomfortable and disconcerting.

I am battling through with work. Part of me wants to prove to myself that I can do this. Time can only tell, but no matter what I am counting down the days until my next operation. It's April now so not too long to make it until May!!

Pre-op done

I haven't updated for a while as I have been trying to get my head straight and work out what I need and want to do about it all.

In the meantime, I was called for my pre op assessment to prepare for the next surgery. I also finally received the letter that also goes to my GP to explain the last consultation visit. It did state that there would be an additional lead put in, as well as a change of battery that would be put in one of the choice areas. I still think i am going for the chest area, as the wire that runs down over my ribs causes so many pain issues and often gets trapped by my bra. 

I am still awaiting a date but the last I heard is that it would be in May sometime, as requested by my consultant. Goes to show that the secretary doesn't know everything and that her meddling in all of this was uncalled for and completely unnecessary. 

Anyway, the pre op only lasts 18 weeks, so that gives it until end of June....but I truly hope it's before then!

So the pre op was interesting, as I got a chance to mention how much the anaesthetic makes me sick and that I have been pushed out of hospital that last two times and then been sick at home. She really listened and am hoping this will be thought about when my admission details are planned. She also understood my issues completely and was sympathetic and interested. It is so unusual for people to have the time to ask and want to know the answers. It felt good. Running through my medical history though really highlighted how healthy I am. How healthy I really should be, if I didn't have this condition. In a way that is great to know but also very frustrating. 

Then she thoroughly checked my heart, breathing and felt my stomach and the battery area. She said she would usually feel people's head and neck but knew this would be painful for me, so didn't do this. 

Apparently I am extremely fit and so didn't need many tests. Just blood pressure, blood test, MRSA swab and weight & height were taken. No ECG needed.

My concern between now and then is work. How will I cope with it? Will it make me worse in terms of pain or with my mental health. I have come so far recently and having a plan and knowing a rough date for it all really helps. I really don't want to go backwards, as I am already staring over with this repeated operation as it is!! 

Just my luck.........!!!!

So much has been going on that its taken me a while to be able to add this post.

But on 9th February I was involved in yet another car accident!!!! I must attract these foolish drivers to crash into me, as yet again this was not my fault. Luckily the bloke has admitted fault but it was pretty clear that he was to blame. He cut across two lanes of traffic from a side road, and crashed into my driver's side car door, scraping down the while of the right hand side by the time I had emergency stopped! 

Anyway, this is such a huge set back. I have again got whiplash as well as a strained wrist, according to the doctors. I feel so achey and stiff and want to be able to take my head off just to rest it. My head pain has increased and my neck is very tender and sore to touch. My shoulder muscles are tight and tense.

On top of this I had an email from work saying that they have got information about my further surgery. How?? I can't believe that it's ok to discuss someone's private medical information without them knowing!!!!! They said the surgery wait is 6-8 months too!!!! This is far too long for me to cope with. I really don't know what I am going to do if I have to wait for most of this year just to get back on track and hope I can get some of my life back and begin to move forward.

I've emailed my consultants secretary, which is where my work got this information from, so I'll just have to see what they reply.

I truly hope I get some good news. I need it!!!

Another waiting game

I am feeling a little bit calmer after finally seeing my consultant neurosurgeon at the hospital on Wednesday. It had been a long time coming and I really needed a plan to base the rest of my life decisions around, as sadly this has to come first in all those decisions.

I set out to have a plan and a rough date before I left the appointment, so asked my boyfriend to come along too so that he could battle some of this for me.

So we went in to the room and as always, I was asked how things were. I actually replied that I was struggling, whereas recently I have just grunted to imply things weren't good. 

I explained the new pain issues with my battery area and without looking, he stated that it must be rubbing against my ribs and hip, causing these issues. That this area has a lot of movement and losing weight has changed how it was sitting in the abdomen, meaning it won't be in the same position anymore.

We discussed that the battery needs to be moved and he showed us where the rib area would be and the other choice is in the chest/collarbone area. This will be my choice and I didn't need to decide there and then! Phew!

He said this will be a new battery type, about the same size as the one I have now. He explained again that this will mean I won't feel the stimulation so that other frequencies, that are to strong now, can potentially be used. 

He then asked what was worse, the occipital neuralgia pain or the battery pain. I explained that not being at work helps me control the head pain so at the moment the abdomen pain is more concerning. He mentioned having options of changing battery or also changing the lead. I said to do everything that can or needs to be done to sort all this out. I then asked if it essentially meant taking all this out and starting again and he agreed to that. 

I ensured that I asked when this could be done and apparently Southmead hospital is under constant red alert, so they often don't have enough beds and people's operations get postponed. He knows his waiting list is full up to March and then has annual leave to use up before new tax year, so the earliest date is April. To me that is a long wait feeling like this, but I have no choice.

He then sent me off for immediate X-rays of the whole implant area. I barely had to wait, so was pretty impressed. I was shown through to a little room to change into a gown and this went straight through to the X-ray room. In total I had 5 X-rays of my head, chest, abdomen and pelvis areas. I tried to take a sneaky look at them but only saw the final one they took of my head, straight on view, so that it was clear where the lead was placed. It was so strange to see it in my head! I really wanted to see the abdomen one and wish I had asked. Although this was taken laying down, so it wouldn't have shown how close it is to my ribs or hip, as it is stretched out much more when I'm laying down. 

I'm pretty sure I won't hear anything about the X-ray and that it was for future reference when I eventually get this operation, but at least something was done and it felt more like a REAL plan this time and this helped it to feel that way. 

So I left thinking that meant a new lead and battery in the place if my choice, however my boyfriend saw it as not a change in lead as the new battery would help things to be different. I'm not sure on this, so nearer the time I will need to speak to him to double check the plan if it isn't clear on my following letter. 

Now I need to sort out the stress in my life. Stay calm and be patient.