Sunday, 27 March 2011

One more sleep!

So!  It's finally here.  The final day of not knowing my fate.  Tomorrow afternoon I shall meet with Mr Neurosurgeon (he's a mister, I'm not being sexist and am sure there are many super Mrs Neurosurgeons out there!).

This is the third appointment I have been given, as unfortunately my case is rather rare and the Team of Neurosurgeons have all reviewed my reports and are now set to see me!

People ask me all the time if I'm worried?  Nervous?  Scared?  I am worried but not as you'd expect.  let me explain....

You see, since Gremlin parked his butt slap bang in the centre of my grey matter, he has granted me this rather odd talent for using the TOTALLY incorrect word when I'm speaking to someone.  It rarely relates to the subject either lol!  For instance, on a trip to a garden centre a couple of weeks ago with a very good friend (she picked me up in her car so we could "do lunch", as I hadn't been out of the house for days) I remarked how much I liked "the colour of that crayon over there".  Cue puzzled looks from friend which I repayed with equally puzzled look before asking her what the matter was.  She pointed out I'd referred to a plant as a crayon and I laughed out loud thinking she'd gone totally bonkers! Haha!  But alas, she assured me I'd said crayon.  I honestly never even realise when I use such random words and truly do believe I've said the correct word, which in this case was plant not crayon.  So I am worried about saying something equally embarrassing tomorrow to Mr Neuro hehe!  I can see it now!  I'll probably ask him how many other cars he's operated on or something!  Noooooooo! So that is one worry I have.

I also worry that I will have to wait a long period of time from seeing him tomorrow until having the decided treatment.  Don't get me wrong, I've adapted to this waiting game malarky pretty well.  It's not the actual wait that is the issue, rather the fact that I am now in a constant state of uselessness.  Much of my days are spent with my eyes closed as it is just too painful to keep them open.  I can't look someone in the eye when I speak to them as I simply cannot focus on their face properly.  My eyes feel like they are in a constant "tug of war" and want to do silly things like give me double and blurry vision.  So I often close them for a while which is just not practical as you can imagine!  The pain in my head is, at best, unbearable and, at worst like some form of ancient torture.  Ironically your instinct tells you to go and lay down but this only intensifies the pain immediately.  As a result my head now feels like a canonball resting itself awkwardly atop my neck.  So, yes, I am worried about being left like this for much longer.

My biggest worry is that my L'Occitane delivery will arrive tomorrow whilst I'm miles away!! I'm REALLY looking forward to receiving it all! Hehe!

Am I worried about surgery, radiotherapy, the aftermath of all this?  No.  Not yet.  I will think about these things when I know what my planned treatment will be.  For now I will just worry about getting through another night of exploding head pain before I get to meet Mr Neuro tomorrow.

Until then, please enjoy one of my all time favourite songs.  Not only is it truly an excellent song (no instruments were used whatsoever) but it really does represent how I feel.  If the Gremlin ever tries to make me feel sad I just blast this out and send it's hairy arse packing..... :)

See you all when I get back!!! Be happy peeps! Mwah! xxxx

Thursday, 24 March 2011

Filling in the blanks...

  1. Now may be a good time to explain that I'm having serious memory issues.  I desparately want to add soooooo much to this blog but it's like pulling teeth trying to get my memory to co-operate just now lol.  So much of what you read from this point on will be me trying to fill in what has happened from the day I found out I have a "Gremlin" (this is how I refer to it to my kids coz I don't see the need for them to hear the words "Brain Tumour".  I shall also refer to it henceforth as such *smiles*). 
  2. Repeating myself is gonna be something you need to prepare yourself for lol.  I'll try ever so hard not to, but it's the Gremlin, not me lol. 
  3. I have quite a warped sense of humour.  I've kept it very tame up til now but - what the hell - I'm gonna unleash it soon.  As one of my superbestest friends said just the other day "Tell that Hairy Arsed Gremlin to pack it's bags" lol!  My sentiments exactly! :) 
  4. Repeating myself is gonna be something you need to prepare yourself for lol.  I'll try ever so hard not to, but it's the Gremlin, not me lol. 

Thursday, 10 February 2011

Two Accidents and a Brain Tumour...

Sounds like a movie title eh?
Well, in actual fact this was how my day turned out on February 3rd 2011.

On the bright side (you'll quickly learn I only "do" bright sides by the way) hopefully that's my three things out of the way.  They say bad news happens in threes, right?  I think I qualify for NO MORE bad news for the forseeable future anyway!  Plus being everything happened on the third day of the month too I reckon I've definitely had my quota now. :)

So, what on earth am I woffling on about I hear you ask?  I think the easiest way to explain will be some form of time line (I've tried to archive them by month to break them up) so just click on each month below to read:


And this brings me to the fateful day this whole Blog is in relation to.....


It's 7am and I'm awoken to the distant ramblings of my local radio station on the clock radio.  God, my head is POUNDING but I must try to wake up and get my two kiddiwinks ready for school.  Thankfully they are no longer the 10lb ish babies I mentioned earlier and being nine and ten they are usually pretty good at getting going in the mornings.  The news today filters somewhat hazily into my tinnitus ridden, dodgy ears.  Something about a really bad accident on the A18.  Must remember to phone hubby and warn him there will likely be tailbacks for miles from the sounds of it.  He travels this road daily as a Transporter Driver you see so perhaps my warning will enable him to take a different route thus avoiding the gridlock.  It must be bad, they've closed the entire side the motorway.

It's now 8am and as I get the kids' breakfasts ready my mobile phone leaps into action.  Bit wierd.  Hubby knows not to phone at this time as it takes me ages to function in the mornings lately and he knows I'll be mega busy organising the kids for school etc....

"Hi babe, I'm OK.  Please don't panic but I've been in an accident - but I'm TOTALLY fine".

The floor feels liquid beneath my feet.  I need to sit down before I fall down.  I swear I can feel my heartbeat in my mouth.....

It transpires the accident was actually involving the love of my life.  He assured me over and over again that he was "fine" but I know what he's like.  He wouldn't want to worry me you see so I'm finding it hard to believe he's fine when I've just listened to all this on the radio! He confirms, yes, it is the same accident.  A bloody nasty one by all accounts!  It is a pure MIRACLE that nobody was seriously hurt.  The call ends and I can't help but feel what a close call that could've been.  If anything ever happened to him my world would end.  He's my soulmate.  BUT!.... no point thinking about what could've happened, just thank our lucky stars it didn't.

I decide not to tell him I'll be calling the GP this morning.  The last thing he needs is to worry about me, bless him.  So I place my call to the Doctor's and ask to see my GP in the afternoon.  I might add I'm unable to drive any more due to the Paresthesia and strange problems with my eyesight.  I go dizzy if I move my eyes too far left or right and can't look upwards properly so with this in mind I need an appointment later in the day so hubby can drive me there.

The Receptionist answers and as soon as I give her my name says:  "Oh, yes, you're phoning about your MRI results aren't you?  You got our letter then?". 

Letter?  What letter?.....

I explain I haven't receied any letter and am told I should've had it by now as it was sent out 1st Class on Tuesday.  Today is Thursday but post here is always late for some reason.  The appointment is booked for 5.20pm.  It isn't until the phone goes down that I'm able to process the fact that my results are back, and in fact were delivered URGENTLY to my Doctor within 48 hours.  Only a matter of hours until I find out what on earth is wrong with me.  I can't shake the feeling it's probably NOT a trapped nerve as things are moving super quick.

After lunch I phone hubby to let him know I'm popping to the Doc's at 5.20pm and am just checking he will be home in time to take me etc.  Sure enough, he'll be home.  I tell him I'd originally called as I felt a bit iffy during the night (no need to worry him with the details after his stressful morning) and coincidentally found out my results are back already.  I can sense worry over the phone so try to reassure him I'll be fine and at least I'll finally be a step closer to finding out what's happening to me. :)

Time ticks on and soon it's gone 4.30pm, about half an hour after when hubby should've been home.  I decide I'll have to phone him as my Doctor's surgery is some 4-5 miles from here and it will be rush hour so I need to leave asap.

"Are you sitting down?" he says.
"I take it I need to be?" I reply hesitantly.
"I've had another accident." he laughs.

The sheer fact that he laughs is a good sign, right?  I ask him if he's joking and he says he's not.  This time he was a passenger in the lorry (his boss thought it best he didn't drive for the rest of the day in case he suffered dwelayed shock from the first accident) and a white vehicle ploughed into the back of the lorry before tearing off up the motorway!  Neither he nor his colleauge (the driver) are hurt - again.  My head can't take much more today lol.  He tells me due to this unbelievable news he won't be home in time to take me there but he'll be there to take me home.  So I ask his dad to give me a lift and the plan is hubby will hopefully be there in time to take me back home...

I enter the Doctor's room.  It's the other GP again (not my main one).  They are both lovely but very different.  My usual one is quite kindly and approachable whereas this one is more direct and straight to the point.  I like both qualities but today I'm ready for the straight to the point so that's good! :)

He asks me to take a seat.  He gets up my radiologist's report on the screen and turns to me before saying..."I don't want you to worry too much but they've found a tumour."  He then tells me to read the report for myself.  It's a long report, full of gobbledeygook which I do not understand.  The words I do understand leap out at me almost as if they're shouting "Tumour of the Pineal Gland.....Seems to be of Low Grade.....Probably Benign...." etc etc.

I look back at the Doctor and say "so it's not a trapped nerve then?".  He says unfortunately it is not.  I will be seen now by a Neurosurgeon at a hospital some 25 miles from here where they specialise in this kind of thing.  I will also have another MRI with contrast dye.  He says it is extremely rare apparently.  Cool!  I like to be "special"!  None of this run of the mill shit for me!  No Sir-ee Bob!  I ask is there anything I can do about the pain and am given some tablets to take in the meantime.  These, I'm told, will "mask" the neurological pains and numbness of the Paresthesia but won't actually cure it.  OK.  Thank you muchly.  I leave the room.

I feel strangely calm.  Looking back I can see the news hadn't yet sunk in.  I don't think it has yet to be honest.  My hubby is waiting as promised in the reception area.  I smile and walk slowly towards him (slow is my middle name now lol) with prescription in hand.  He asks if I'm OK and I say "yup, just need to go downstairs and get this prescritption babe".  So off we go.  He asks what my results say.  I can't tell him here.  I mean, I'M fine but will HE be fine if I tell him this in the middle of a busy pharmacy whilst awaiting my new prescription?  I tell him I'd rather talk about it in the car.  We wait for my prescription and I wonder how to phrase it to him.  I can't find the right words.  No matter how I try to put it in my head the only words I can seem to notice are B R A I N  T U M O U R.  We get in the car and he goes to drive off.  I ask him to put the handbrake on for a moment (I didn't think telling him whilst mobile would be the best idea considering he'd been in two accidents already today lol!) and there it is.  I've told him.  I seem to have a brain tumour.  

Saturday, 1 January 2011

Duracell Bunnies are GO! (Or not as the case may be lol)

A trip to the GP results in me being referred for an EMG (Electromyograph). So I'm gonna be in for an electrifying time woohoo! I'll be buzzin' when I come out (I know, I know that was bad lol). This will be on January 10th. My GP said he wants another MRI ordering. I said I'd had one done only about 4 months earlier but he said we'll have another one of my brain and spine this time. Maybe the trapped nerve is in my neck and that's why he want's another one doing? A referral to a Neurologist is also being arranged but this will take a little longer. I thought I'd simply leave the Docs with some magic tablets to stop this trapped nerve in it's tracks but nope. Seems an awful waste of the Hospital's time for a trapped nerve. Geesh.

After oranising a surprise birthday party for hubby on January 8th, I was literally shattered. Now given the fact I'm usually like the Duracell Bunny on speed I was starting to get pretty peed off with my distinct lack of energy. My gym class mates don't call me "Tigger" for nothing but now I feel more like a hungover slug! I never suffer from headaches but this one's a corker! I only had ONE glass of red wine at the party too! Maybe it's just the hustle and bustle of Christmas, New Year etc. The party was a great success but people are beginning to notice I'm not quite my usual eself. I spent the evening making "shocking" (sorry lol) and "hair raising" (oh dear lol) jokes about having my trapped nerve electricuted in two days time. I was miffed I couldn't join in with the new Xbox Kinect games everyone was enjoying though! I'm usually the one dragging everyone on it whether they like it or not hehe!

Went for my EMG which was nowhere near as painful as I'd anticipated. In fact I hardly felt a thing so that was good! Yay! :)

Three days later my lips, tongue and face (left side only) went completely numb. It literally felt like I'd been anaesthetised at the dentist! I figured this must be some kind of after effect from being electricuted a couple of days ago and phoned hubby to tell him. He said I should definitely phone my GP. I said I would but in actual fact I waited a good 3 hours until phoning the GP because I was sure it would just subside on it's own. It didn't.

My GP was not at the surgery so I saw a different one who did some lil' tests on me (reflexes, light shone in my eyes etc). However it was when he pricked my left leg, foot and FACE with a pin and I couldn't feel it whatsoever things started to become even more weird. You see, unbeknown to me, my EMG results were already back (they usually take a couple of weeks) and the GP said they were abnormal on both sides. I smiled and slurred "oh no, my right side feels just fine." (couldn't speak properly due to the tongue numbness), but he assured me it wasn't as my nerves are not conducting properly on either side apparently.
He then arranged for my MRI to be made even sooner.

Two days later I got a call from the person who books the MRI tests. He said I could've had it the next day (wow.... that IS quick!) if it was a simple routine scan but since it would be in the mobile MRI unit (as I had been marked as "urgent") he'd have to book me 3x 20 minute slots as I would be having an hour long scan. So it is settled I'll have my full spinal/brain scan a week on Saturday.

I cannot belieeeeeve it! My scan is today and I am absolutely FULL of cold! Probably the worst one I've ever had! Everyone around me has already had it and I was bragging I'd escaped it's clutches so I guess it serves me right lol! Trouble is, my eyes are literally streaming and I can't stop flippin' sneeeeeeezing! How on earth I'm gonna manage to lie still for a full hour is the six million dollar question indeed! Hayelp! Hayelp!

I've drugged myself up on Beechams, Sinex and cough medicine in a last bid to stave off the sneezles! I arrive a little early but they're already waiting for me so I go through a few things with the two radiographers and explain I'm muchos likely to sneeze etc. They say it's fine and not to worry but I really don't want to bugger their schedule up by having to redo half the scan. I ask them how long my results will take to come back and am told an average of 4 weeks.

I've brought Rihanna along with me for the ride this time. Not literally silly! Just her CD to try and drown out the banging and clattering of the scanner. Now for any of you that have had an MRI you'll be able to relate! For those of you who have not, it's erm, an "experience" lol. Quite impossible to describe in words but there is nothing louder or more bizarre sounding than the rather aggressive sounding noises this things spews out! So Riri can transport me (via the headphones) to somewhere nice methinks whilst I try to forget about the gruesome looking cage my head has been placed in before the scanner pulls me into it's deep abyss.

I get the overwhelming urge to laugh out loud whilst about half way through my scan. I'm listening to one of my fave tracks; "Man Down" on the CD and at that precise moment the scanner takes on a different noise, akin to that of a very loud machine gun! Haha! Riri is singing away about being shot and here I am in a white tunnel, unable to move a muscle as it emulates noises like I'm in the middle of some type of crossfire! Hehe!

The Radiographer is lovely and talks to me regularly to tell me how well I'm doing. Trouble is I can't respond for fear of starting a coughing fit or sneezing (which is NOT something I would like to experience with this strange cage inches away from my face) - eew!

So! The scan finally comes to an end. They didn't need to redo any of it as I managed to stay nice and still throughout. I wonder where the other radiographer went as I'm asked to sit down for a moment in the little room where he controls everything from. Hard to believe we're actually inside an articulated lorry, ain't technology marvellous eh? He says he likes my CD and is thinking of buying it apparently. I had no idea he could hear it too haha! We got to chatting about Rihanna and the tattoo on my foot and I coudln't help thinking how nice this guy was. He then got up to help me out (there are a few steps up to the mobile unit and due to the Paresthesia - this is the posh "technical" name for my wangy left side by the way - I'm very unsteady) and casually slipped in "Hope everything goes well for you, your results should be back within a week". A week? Hang on a minute? They definitely said four weeks before I went into the scanner. Strange? Oh well, maybe they liked my CD or my tattoo soooooo much that they decided to fast track me hehe.

Four days later I had a dreadful experience whilst asleep in the middle of the night. I was fast asleep and literally jolted awake with a start! As if someone had shocked me out of my sleep! I remember sitting up and trying to look at the clock to see what time it was, only I couldn't see! Everything was kind of pixellated and the ringing in my ears was so severe it blocked out my hearing completley. This lasted (I'm guessing) around 2 minutes but seemed a lot longer. My vision slowly came back and I just sat there dazed and confused for a while before attempting to nod back off. Putting it once again down to some kind of reaction to the MRI I decided not to wake hubby as he had to be up at 4am for work and by now I could see it was 2.30am.

Must phone Doctor's in the morning as that was NOT something I want to experience again!

And this brings me to the fateful day this whole Blog is in relation to.....