Been gone..but still around

I have not added to my blog for a long time, but no news is good news. I am feeling pretty good.

I have been back at work for about 6 weeks. I have slowly been easing myself into it and am still not doing a full 40 hour week. I began by just doing two hours each morning which I felt fine with, allowing me to see what was happening in my department, nut not actually taking on much work. Though I never really did 2 hours because was hard to get away on time. I then been increasing the amount of hours I have been doing, depending on how I feel. Two weeks ago by mistake I did a full day, a lot on and a stressful day, I was now back managing and creating images. It did hit me the next day, but I have managed 3 full days and two six hour days last week. It is extremely tiring at the end of the week and may have pushed myself a bit too far.

My scar and head have felt pretty good, I have had some bad moments, some really bad pains (like someone stabbed me in the head and twisted a knife in it). Sometimes I will get headaches, it was not a great day yesterday, but some ibuprofen sort it out as log as I keep them up.

I have not had any fits, I am still on the medication which has stopped me having them but I would still get the odd funny feeling but they have stayed away.

Since my last entry I have had a MRI scan, the first since the op. This is what will all my scans will be compared too to see if anything grows back. Today was the appointment with my surgeon. We discussed the scan I had and said nothing bad appeared wrong. i will be having scans every 6 months to make sure there are no changes. Six months gave me some confidence as I once thought it was going to be every three months.

We discussed my eyesight, it has not improved one bit, my right eye is only slightly working though my eyesight is clear, just not a full vision. The Doctor said it was strange how it seemed to start to come back when I was first recovering but after a couple of weeks, went to its current state, usually it either doesn't come back for a long time after op or does comeback quickly (like I thought it was.) I have got used to my eyesight, I am still bumping into things, but my wife has said that she forgets my eye is not working as I do not let it affect my life. I am used to bumping into things now.

So that is the update, I will add more as I get more towards getting back to working full time. In a previous entry I mentioned about pictures which were taken while I was being operated on, I saw the cd with them on at the hospital today, though I am not allowed it until they have been cleared by the legal department. I have not even seen them myself as the computer was not logged in.

So keep your eyes peeled for pictures of my brain, I know you all want to see them!  For the moment a few pics I got of when I was in hospital, a few days the operation.

Been a while

It has been a while since my last blog post. To be honest not much has gone on.

I am recovering well, my scar has healed very well. As far as I can tell I have some scanning left on it but just in small areas, around where the part of my scull was removed.

I am getting out each day for a walk, doing more each day, currently one hour. Last time I had to have a nap was after a weekend at Centre Parcs, I couldn't do as much as everyone else. They all got bikes, myself and Melissa didn't though it was tempting to get the bike which has a large seat in the front but we it was unfair on Melissa (still in a mood with her.) After we got home I slept for 6 hours, woke up at 7pm, went to bed at 11pm, I ended up getting up at 9am. Was just proof that I was still recovering. The weekend was just what I needed as was getting a bit frustrated.

I have been working in my computer to get used to it, resting every so often. My eye sight is very clear in my left but have had no progress in my right. In the next few days I am going to use photoshop to give you a rough idea what I see. I am still not 100% used to my eyesight when I am out because I have been bumping into quite a few people and alot of people have been cutting me up.

Back to work next week, couple of hours a day, then increasing it each week.

I will post the pics which gives you a rough idea of my sight soon.

Tired

So this is it, the start of the start of the frustrating part. We got back from Paris on Monday, was an extremely exhausting weekend, I actually fell asleep while on a river boat near Notre Dam. I had a few naps on the train but did not want to ruin my sleep pattern as it is nearly normal.

The next day I woke up feeling pretty good, I had to go to the doctors to out my prescription in and thought I would also collect a few bits, milk etc. I was out for about 40 mins. I was absolutely exhausted, Paris was still taking it's toll, I just felt drained. Took me most of the day to sort myself out.

As my eye is not realty doing anything I have decided to just get used to it. I have been on and off my pc, letting my eye get used to it. It stays good for about 45 - 60 mins, it then gets tired but does not cause headaches. I don't feel tired jus my eye.

I have still popped out for walks, just the local park, but I am not going as far or I am stopping half way for a while. I feel I just need to keep this up so I can get more confident as areas which I am not used to with my dodgy sight can still be a bit daunting.

A nice relaxing weekend now with friends at centre parcs, nothing like a weekend break to help this frustrating part of recovery go quickly.

Home Alone and Speedy Family

Last night I was left home alone for the first time, Melissa is cycling to Pairs (UK bit was yesterday, today was part 2 now in France)

Today was tiring (yes again) but hopefully means i will be all good tomorrow to see my fantastic wife get to the Eiffel Tower. I took it reasonably easy today, watched the rugby and chilled out. i Went into town with Mr Ashton for a few hours, had a couple of rests but it felt good. Did get a freaked out 8 times by people appearing on my left hand side and bumped into someone or something 4 times, these happened at the start, got used to it and adapted myself near the end.

Taxi is picking us up at 6.30am tomorrow and euro star is at 9.22am. I am going to try and sleep as much as I can, not very sociable but I want to as much energy as I can to see my wonderful wife cross the line at the Effiel Tower (and my #1 sister in law Kirsty) 200 miles in 3 days! It is all for diabetes uk, if you want to sponsor them you can find their just give pages here.

Diabetes UK Just Giving Sponsorship Page

Just a quick update, I may try and blog from France tomorrow...oooh!

First appointment since the operation

We have just got back from Romford Hospital. It was my first meeting with my neurosurgeon since being in hospital. Had had a pretty good feeling about this as they had not rushed me back in in the past two and half weeks, but there was always a chance that something bad could come out of this.

The surgery went well, this is not an exact number but it is believed they have got 90% out. They had to stop the operation because there was a very painful area for me which they avoided as much as they could but as they went on they had to go back to it as it was all that was left. the more they took the more it hurt and the more out of it i became, this is when they stopped. During the removal they found my lump blead a lot and was causing a issues, it made it harder to operate on as they had to keep clearing the area.

They have discovered that the lump is a meningoma, if they would have known this before they would probably not have gone for a awake crainotomy and knocked me out while removing it. They have not been able to give an exact class of the tumour, rating 1 is the lowest (originally believed) and 4 is the highest. Because the tests could not give an exact result the rating for mine has been given a 1 / 2, just as a caution. This does mean i am going to have more frequent tests on the area than originally thought, my first scan will be in 2 weeks with a follow up just after.

Here is a link to what it is believed to be:

http://www.bbc.co.uk/health/physical_health/conditions/braintumourbenign.shtml

I mentioned my eyesight, at the moment it is a total waiting game, I plan to just test my eye sight a bit each day, try to get used to it and build up the time i use my right eye.

Now it is a waiting game for a while and keep working on my recovery.

Staying Awake and Dealing Unpolite People

Since my last entry I have been a bit all over the place! My last entry I was getting head aches again and had been put back on steroids. This worked and still is but made my body clock go a bit strange. The steroids were to see if they could help my sight cone back a bit more but not much has happened. I got back on the tablet on Friday, was a bust dag, which I mentioned in my last entry. After that entry we went out for the evening, I did not feel sleepy at all, I didn't feel sleepy for the whole night! Went to bed at 11pm and was tossing and turning for hours, just couldn't drop off, I was trying games, TV and at 4am i came to the decision to go and watch a film. i just could not full asleep, I watched American Gangster and at about 5.30 am decided to give sleep another go. SUCCESS!!! I fell asleep, but my body did not care what time i fell asleep as far as it was concerned I was going to wake up at 7.30 am, I think I got just over 2 hours sleep. I felt fine and slightly refreshed, saw my wife go out for a bike ride, but sleep was no option, my body was happy with a power nap.

The family BBQ was at about 1pm, Melissa got back from her 40 mile bike ride and we were meeting my parents there later. I had been looking forward to this for ages but in the back of my mind was worrying about staying awake and becoming grumpy. When we arrived I was offered somewhere for a nap but I did not want to miss out.

As the day went on we played a few games had some lunch and soaked up the sun, few hours down the line I still felt pretty bloody good. Then one my best mates popped over to see how i was doing as have not seen him for a few months. All this was keeping me going and happy, grumpy Andrew was not appearing.

The day turned into night and I was still going. I had been in the Jacuzzi once already but went in again. This time though I went in on the hope it would help me relax. Indeed it did, i was in for a while, i dried off and we were the last to leave the party. Got back to my parents and I slept for t hours straight. I still am amazed how long i was awake for, over 40 hours sleep with a 2 hour nap in the middle, in my opinion i was not grumpy.

We had a few things to sort out but after living in hospital then at my parents, Melissa and I were moving home. Was looking forward to it, my Mum and Dad had been brilliant and it never felt strange living back there. This felt like the next step for me though, even though i am still recovering and need to rest it meant i got some independence back.

Since being back for 2 days I have had on and off moments, Monday I slept a lot, this does not bother me too much it just frustrates me when i cannot get the energy to do the minor things. i wanted to update my blog but with being tired and rubbish vision I couldn't update it. Also it was Melissa's 25th birthday, but I could not get the energy to take her out, this a contract promising to take her out when I am well.

I was allowed out by myself to day, not far, i went to aldi to get some bread. I felt ok about it, was just very cautious. But got a woman shout and moan at me. I was queueing at the till, when it was my turn the guy on the till passed me my plastic bag. Now i believe i am on a bout 25% vision on my right so i could not see anything. the woman behind me then raises her voice at me like i am a piece of crap on her shoe that he is talking to me. I was very happy with my response, I turned towards her, which allowed me to see the bag and polity said I can only see a small amount out of that eye and i could not see what he was doing. i turned back round, got my shopping and left. I was annoyed but she was not worth it, suppose i may have looked like i was ignoring the check out bloke, he was still polite, the customers were the problem.

Tomorrow is my first trip back to Romford hospital for a appointment with my surgeon, will be getting test results and full feed back from the awake crainotony. So looking forward to hearing the results and maybe getting some pictures of my brain. It is on my mind a bit, but if something really horrible would have been fined i would have been already back in hospital. Hopefully this will also show the next step for my eye sight, it is still crap. No headaches but  i have still only got a small percentage of vision from it, here is a wikipedia link which gives a rough explanation of the lack of vision in my right eye.

Homonymous Hemianopsia

Hope this reads ok, this is my longest blog i have done so far so please forgive my grammar and spelling, i have tried to sort it as well as I can.

Good Days and Bad

Right now i feel good. I have been awake all day, with no naps and had to be up early to get to the doctors to get my sick certificate.  Good successful day, unhealthy fry up, wonder in town in town to spoil wife, meet up with work mates and chilling in the sun this after noon. Finished with a meal out with wife and parents for a early birthday treat for Melissa.

Even though today has been a success I did have a hard day the other day. Maybe i got a bit ahead of myself. But i woke up a couple of mornings ago with a uncomfortable headache (i am rock hard so it did not hurt.) I had cut down in my paracetamol as i felt good and only had them in the morning and evening. this caught up with me, it wore me out and the headaches were easier when i was asleep. Also the steroids which help the swelling had finished which may have contributed. I am now back to taking regular paracetamol even if i feel OK and have been sorted with more steroids. my surgeons secretary is brilliant, my surgeon is on holiday and not back till Monday buy helped me speak to a specialist and helped me soring out steroids at my GPs. She has been brilliant through the whole procedure, from initial diagnosis till today, the Dr is a very lucky and he has said agrees. Gill is a top lady!

Family gathering tomorrow, going to freak a few with my scar! I'm a git!

While writing this i have been listening to my playlistis i made for the operation, currently incubus. I did not listen to any music for the while time. too busy chatting but really enjoying them now.

Unstitched!

I am officially unstitched! They removed the stitch where my drainage pipe was. I was given some large plasters but I hope I don't have to use them.

I finished my steroids which is one lot of tablets gone. I have also stopped my strong pain killers. I don't even need paracetamol that often. So just my usual Keppra (for my epilepsy) and paracetamol at night to help me sleep. This has muddled my sleep up a bit, I woke about 5.30am, stayed in bed for an hour but got up at 6.30. Sorted myself out with a nap later on.


Tomorrow I am going to contact the hospital as my eyesight has hit a brick wall. I am still relying on my left eye. Just going to see if I can see someone about my vision sooner rather than waiting a week till my next appointment and nothing changes in that time.

Popped Out

today has been very successful. It started with a pretty good sleep. since the operation my sleep has been horrible. i would wake up at 5 am most mornings where ever i was, hospital or by myself in my parents spare room. but today i was asleep till 7.30am in the morning and no headache. that gave the push to write my previous post.

I wanted to avoid sleeping so did a few things today, not too much though. Popped out with my wife for some lunch, went in to town. But by 3pm i was completely exhausted. I have g-had a quick sleep which sorted me out.

Today I got annoyed by Harwich Hospital, its been 24 hours and no one has told me if i have an appointment to have my last stitches out. the whole hospital is in a mess. i think it will me easier to go to Colchester walk in centre.

my sight is still relying on my left eye, nothing is re appearing ln my right. i tried blocking it and have  a small amount of sight but it gave me a bit of a headache so will leave that idea.

I have been recovering for a week.

This may be a bit scruffy as my sight is still pretty rubbish in my right eye so forgive me for the mistakes.


There is lots to write but i cannot focus for long, I will add in small parts each day. I was in surgery for about 7 hours, i was completely awake. the two worst parts with multiple stabbings in my wrists while there were trying to connect me to a machine  for my heart rate and blood pressure. I started to feel pain when they were skimmin down the lump, it got to a point where it took a couple of minutes to recover, we then stopped and finished up. samples were taken and it is being tested at the moment.

I was in hospital for 5 days. each day i was needing less sleep. i am on paracetamol and something a bit stronger at night to help me sleep. i managed to get through it with movies on my ipad and a dvd player, CSI is keeping me going.

I have been now staying with my parents for a few days and a and a few visitors round. I had my staples out of my skull, was easy. got another couple of staples after the bank holiday. ho[efully we will see a few more people. though i am still finding that i need a sleep in the afternoon.

My next appointment with my under two weels. I will find out more then, hopefully my sight in my right eye cines back, it gained more sight than went backwards so not sure what is going on. hopefully i will get pictures ne being cut open and operated on and awake so i am looking forward to them.

I am leaving it there today but going to rey and add to my blog each day. So lets see how it goes.

Its the big day!

Lying in bed...

I am awake, we are leaving in 40mins. I didn't sleep to bad. Got nearly 4 and half hours in. Though was rudely awoken by our cat knocking over a bin looking for a bit of gammon my wife had put in it! THANKS MELISSA!!

My mouth is dry! I need a drink! But it's nil by mouth. I didn't haven't loads last night but wasn't really thirsty and didn't want to be getting up during the night.

Think the nerves are finally kicking in a little. Can they just come and do it hear, right now. I am ready for them. Knife, chisel, hammer and a staple gun! I am already in bed, no need to move me, though I would not be prepared to stay awake during it! My dad has all the tools and mum has some reasonably sharp knives.

In the car...
Not much going on. So I guess this is my last post before I go in. So radio silence from me. I will finish with a picture if my long term companion, ladies and gentlemen I give you Roland!


- Posted using BlogPress from my iPhone

Its Happening

This morning I called my surgeons secretary, its going ahead, not sure exactly what time, but it is definetly happening tomorrow.

I woke up last night about 3.30am, the surgery had snuck into the dream and woke me up. It was officially the point which I really started to get nervous. I was in and out of sleep for the rest of the night, though felt surprisingly fresh when i had to get up for work. I was thinking about the last surgery i had three years ago, a rhinoplasty ( an operation on my nose as it was broken when young and a bit bent giving me restricted breathing.) I was not nervous for that during the build up, ok it is not major surgery but i was knocked out and had a couple of weeks off. But one i was being prepped it hit me and i became more nervous and just could not wait to be completely knocked out. So may be thats when i will get nervous, oh wait...I am awake through the whole procedure.

Last day at work to day for a while, handing over bits, I wont bore you. Get amazing card, created by Neil.


Been sent loads of messages on twitter and Facebook which I thank everyone for.

Bags are pretty much packed. Though had to text my wife as I forgot one very important item, Roland Rat. He
has come to all my hospital appointment's from one I was small and having gromits in my ears and when i had my rhinoplasty.

Also a quick note who has put a link to my blog on freedating.co.uk? I was looking at the stats for the blog and found that there is a link on there but i cannot access as I am not a member and do not wish to be.

I will write my last blog before i go into the hospital in the morning. The hospital has no internet signal on the wards. I will be blogging while I am in the hospital but I may just have to upload them all in one go when i am out if i am not allowed out of the bed, I will see what I can do though.

Again thank you for all the kind messages.

Packing my bags!

After the operation my wife, the cat and I are staying with my parents. Just so there will be a number of people to look after me. This means I am having to pack 2 bags, one for hospital and one to have at my parents.

The hospital bag is the usual bits with a Charlie Brooker book and 3d Magazines, iPod and iPad stocked with games, movies and music. Got my danger mouse pyjamas, yes I am that cool!

The other bag has clothes but also stuff to keep me entertained for the week. I am packing up my xbox, I have borrowed a number of games, battlefield 3, home front, Crysis 2 and another one. But this is not a computer game blog. I have brought first 6 series of CSI Las Vegas, I will take a few of those DVDs. Then just a few classics.

Had a phone call today from one of longest and closest friends, though he is not that close, Australia. He works in the outback 7 days straight then has time off so contact will be hard. Cheered me up speaking to him, may not be about a happy subject, but still made me smile.

Tomorrow I will find out if the surgery is definitely going ahead, so fingers crossed no emergencies come in!

Creating my playlist and working while looking like I want to fight!

I am writing this while I am waiting for my CDs to burn. I am allowed to listen to music during the surgery. Now it takes 4 - 5 hours so that potentially is between 4 and 7 CDs. I need to think very carefully about what I want, I don't want anything to heavy or jumpy, don't want to frighten the surgeon at a critical moment and don't want to put all mellow stuff on as I will get bored. I have decided to do more CDs than I need so I can decide during the surgery.

Also do I want podcasts? Maybe some Richard Herring or BBC fighting talk, they always go down well. Though you need to listen to them or sometimes you get lost. At least with music you can jump in and out when certain things are going on (I will be tested on various things to make sure I am ok at certain points.)

Few hours later...

So these are the CDs I have created:

Beatles
Daft Punk
Blondie
Deaumau5
Klaxons
Stereophonics
Queen
Blur
Incubus
Oasis
Foo Fighters
Electronic 80s
Funeral for a Friend
Air
Florence and The Machine

Also today I went back to work with my new hair cut! A lovely skin head (number 1 all over.) i have done it so i don't look a complete fool after my operation, my hair length will be at nearly even all over. I actually quite like it and so does my wife. Sadly it has shown me where I am losing hair but at least it's at the front and not on top like a monk. I had many comments at work, all saying I look a bit thuggish. I am not going to keep it like this but think it looks ok, I also like how I don't have to style it in the morning.

I start my steroids in the morning, dexamethasone, this is something to do with anaesthesia. Though I just took the prescription and said ok. Maybe I am a bit too laid back, but they would not give them to me for no reason. If you look at my body even though it is a woman's dream body I do not do steroids, it's all from surfing (on my iPad).

Tomorrow will be my last night at home for a while, going to enjoy my bed the next two nights.

Is it or isn't it?

Quick note something I forgot and I think if you will be wondering if u have read my first post, is it cancer? Well we don't know and won't know till 2 weeks after the operation. They will test what they remove. it is believed it is a low grade tumour. If it is growing, then it is incredibly slowly and you cannot tell by MRI, you need samples.

Awake Craniotomy Links

Now I have not been able to watch this all the way through but this is the procedure i will be going through, though one difference is that i will be awake through out the whole procedure, where as in america you are asleep while they open your skull.

Can understand if you do not want to watch this.

also a link to a rough guide to what i am having done in romford on the Southampton NHS site: http://www.suht.nhs.uk/OurServices/Nervoussystem/Neurosurgery/Diagnosisandtreatment/Braintumours/Awakecraniotomy.aspx

What's been going on over the past 3 months

This is going to be my blog / diary over the next six weeks. It is going to be a record of my recovery from brain surgery. But first I will go back to early April where all this started, or shall we say become more obvious and serious.

Mid April I woke up at about 2.30am on my bedroom floor naked with just my socks on (only socks because I was lazy). I woke up feeling hazy and could hear strange voices. I looked up and saw three random strangers standing over me all in green. They were paramedics, two from an ambulance and one from rapid response. I quickly grabbed the covers, they chuckled and said "don't worry we have seen it all before." I had no idea what was going on, felt ok, not brilliant but maybe as if I had been drinking, had a hazy head. I got changed myself and was then taken to the hospital and was in A&E for a few hours and sent home with no real answer to what happens, just that I had had a fit. I had never had a fit before so we were a little confused, my wife was obviously worried as seeing me like that was more frightening for her than me.

The next day I could barley move as I had pulled all the musles in my back. Our main worry was what caused it. We were going on holiday and we were worried about what would happen over there. We managed to get in and see a private doctor, we discussed my symptoms and he said it was an epileptic fit. This was confirmed after I also explained funny spells I had been having for a year, which I had put down to stress. These spells caused metallic taste in my mouth and would struggle to speak, I could feel them coming and would last a matter of seconds. He put me on a course of tablets called Keppra. These had an instant result, no more funny spells. So we went on holiday, I had to get new travel insurance which increased from £5 to £60! I had no problems on holiday and just tried to forget about it all and relax.

When I returned I went to a NHS neurologist at Colchester General, she was a bit strange and had a bit of an attitude problem, she didn't like the fact I went private and couldn't see how the private doctor came with that diagnosis and that I would have. CT scan and no MRI scan (private doctor had said I should have on). We thought we would see the out come of the CT and if nothing about an MRI came about we would ask for one, but had no issues. I had a CT scan, then a week later I was asked to have a MRI the following day and see the neurologist the following day. All this happened very quickly. Myself and family were wondering what is wrong especially as the neurologist had said I will not have one.

I returned to the neurologist and she informed me I had a lump deep on the left hand side of my brain about 2.5cm x 3cm. We asked all the questions, is it cancer, is it life threatening, does it need to be removed. She informed us it was cause liquid to be trapped brith it and that was causing the fits and it could have been there for at least 20 years (I'm 28). We were told as the medication was working it will probably be left there but I still need to see a neurosurgeon at Queens Hospital, Romford.

How wrong she was...

A few weeks later we went to Romford (45mins away) to see a neurosurgeon. We thought this was mandatory and he would tell us that I just need to have regular MRI scans to make sure it is not growing. straight away he informed us that they do not know what it is but that it has to come out. We were shocked, we explained what we had been told and he noticed how surprised we were. Te specialist would produce my MRI scans to a board of doctors and surgeons and they would discuss what the best thing to do was, though he did say were probably going to agree with him. So we left shocked and would return in two weeks.

Couple weeks later we went to see the neurosurgeon and he confirmed what he said before. They will be removing it, they will remove as much as they can, though maybe not all of it as it increases a risk of permanent damage to the brain.in the previous meeting he had also dropped another bomb shell and asked for me to think about having this operation completely awake. The operation is a craniotomy, they will use the MRI scan and a stealth MRI scan as I very special Sat Nav for my brain to locate it. I will be totally aware what is going on and will be asked questions and have tests to make sure I am ok during the 4-5 hour operation. In America they knock you out at the start and wake u back up once they have opened up your scull (the whole is about the size of a tennis ball). I was prepared to have this done and am currently thinking of what music I want to listen to as they allow you to play your own just to get through it. I was told the worst bits are the noise of your scull being opened up and the boredom.

Now I am chilled out with these things and still am now, I don't get worried to the day before. I have just had my hair cut to a number one so it's nice and short and still thinking of music I want to listen to.

Recovery, I have read up and as I am not bing knocked out I will be in hospital for 3 days max if all goes well, maybe put on the Saturday 20th August. I am going to be off work for a while, maybe 6 weeks. To keep me entertained I have been leant a bunch of computer games, signed up to love film and brought the first 6 series of CSI: Las Vegas ( original is best, no Miami or new York.) for the first week I have been told by my wife and mum I will be moving back in with my parents so they can look after me together, I haven't lived with my parents for three years and wasn't too happy as I am more comfortable at our flat. I made some demands, control of tv, sky movies and I decide what we eat (how many will come true, who knows?!?)

This was my long introduction, I may add to it but I didn't want to waffle but a lot has happened, I will now be adding a bit to this blog up to the date of e operation, Thursday 18th August 2011, 4 days away. Though this date may change as due to one neurosurgeon being away and one surgery being deep cleaned if an emergency comes in I may be put back 2 weeks, I will find out the day before which will be frustrating as that will be when I begin to worry.

So let this begin...

This will be my brain blog

Hi this is just a test! I will be blogging about my up and coming brain surgery and recovery.