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Tuesday, 18 December 2012

Santa gets his marching orders

Its been a while since I last updated my pop blog. The truth is things have settled down a little more in my world and as my horizons are currently quite narrow due to my licence still in the possession of the DVLA and my inability to walk long distance. Outcome is I've not had much to report and I figured an update on my latest baking achievements might be a bore.( mince pie cupcakes if you're interested)
James and the gerbils have settled themselves into an uneasy but tolerable existence. My pain is manageable and each day I try and find something good to be happy about.

People often ask me how it feels having this strange drain in my head. Well it hurts when its really cold but it is metal in part so no surprise there and my head is pretty lumpy but then it was always slightly odd shaped. The best way I can explain the feeling is that it's like having the queen of all hangovers without any of the fun of the night before. I haven't dared have a drink since March explosion as the permanent hungover state kind of suggests that a real booze hangover could be very nasty indeed.

One welcome side benefit of all my head explosion business is the return of my old friend 'coca cola 'back into my life. Me and the brown stuff had a love love relationship in the nineties and now we're back together forever. Okay in truth it was mainly because it was the perfect mixer for Bacardi , but I was working long hard hours in retail and my liquid refreshment and often meal of choice was Coke and boy did it keep me going. I soon realised this sugary caffeine concoction was not doing me much good back then so weaned myself off. Then many years later the brain docs whilst witnessing my rather violent reaction to a lumber puncture and subsequent low brain fluid pressure suggested that I drink some coke. So that's good enough for me, after 15 years off the stuff when my head pressure is low I now reach for a full fat coke, feel no guilt and gosh it tastes great. Don't think they'll be signing me up for an advert just yet though what with my lumpy head, I can just see the slogan including the word'shunt!

When I'm sipping my cold nectar drink it often gets me thinking back to my retail days; I has such fun then and i chuckled to myself the other day remembering that I fired Father Christmas. Working in a big London store as the Toy manager meant i got to take on the grotto each year. Elves, you expect trouble from them, we hired and fired loads of them, inappropriate relations with another Elf in the grotto after hours was just one of may reasons. FC though you would expect to know better. Letting Santa go was not a decision I took lightly but unfortunately my attempt at team building amongst the Christmas temporary staff obviously worked too well when they took Santa over the pub and got him tipsy at lunchtime. The smell of Johnny Walker is not a welcome one in any grotto so Santa had to go. Christmas cheer was in short supply during that conversation. So I guess this mummy won't be caught kissing Santa Claus as he'd probably run a mile . I wish all of you a healthy and happy Christmas with your family and friends and thanks for the love and support ive had this year as I head to my first Christmas with my new, some would say improved, head.
Hopefully the gerbils won't get too excited over the christmas period.

Monday, 19 November 2012

Tunes that mark time

Strange isn't it the effect music can have?
I am certainly aware that taking time to stop and listen to songs has always been an important part of my life, and the amazing daughters are beginning to find their tastes and style now which is a joy to watch if not to listen to. I grew up with music playing most of the time at home and now have a very fond attachment to Fleetwood Mac, Gerry Rafferty and even Dr Hook and I'm word perfect to most Rod Stewart tracks. ( That gives my age away!!) Later on I explored my own tastes blowing my pocket money on the latest vinyl single. First single? Yazoo, 'Don't Go'. I had the added bonus of an elder and wiser sister who bought far more records than I but which I could then copy! The technology of cassettes was great for Top 40 mixes,( copying big sis's tunes)and the gift of personlised compilations always introducing something new from dear friends. Some of these relics I have kept to this day, and an airplay of any tracks from them transports me and my mood. Barrel's boy may have gone digital but his mixes still delight me as they did 26 years ago and are responsible for connecting me to artists whom I may never have found.

I deployed a wide choice of deflectors during my unplanned, lengthy , uncomfortable stay in hospital to distract me in those darker times; prayer, chocolate , writing, visits from friends and family and of course music. Music soothes, energises, rocks and moves me. My music was a mainstay in the regime of the hospital day. I only had to switch on the iPod and I could transport myself. ( I even texted Jo Whiley show one night for a Cure didn't get played though!) It got my mind recalling cracking tracks that have marked special and momentous times in my life; 'Fields of Gold' Sting version at my wedding, 'My Way' at Gorgeous Great Uncle Gus funeral, 'Unbelievable' by Happy Mondays which played constantly during a frantic and fun girls holiday, Frankie Valy, 'Oh What a Night' takes me straight back to Locust Valley. Songs just kept popping up. I even replayed the entire dance routine a girlfriend and I did for Wham's 'Young Guns'; (just in memory, I'm not up to doing that at present even if my hair is very suited to that era). My grunge phase is hazy, my dance phase hazier still and some tunes I truly love will never be confessed.

A thought grabbed me during these recollections; what tunes would get played at my funeral. Afear not. I'm not melancholy and maudlin, in fact I've had similar discussion on this subject at dinner parties. Yes it's true that during my previous 'pop' episode in March death was a real possibility, now , whilst my health is far from perfect and at times still scary and painful, my demise is hopefully a long way off in my future. After a few moments spent mulling this over I realised picking tunes for this kind of event is a thorny problem best left to those behind to sort out as it would be other people's good memories being triggered not mine. So I end this ramble of no particular purpose just being thankful for the music, ( no, no ABBA please) the good and the bad, and if had to have my pick today for just one 'Eulogy Song', (which no doubt would be different if you asked me tomorrow, next twenty get the picture) is 'Stand' by REM.

Friday, 26 October 2012

Weathervane girl

Its been three months since James Shunt moved in to my cranial space and we appear to be jogging along right now. I almost hate saying it out loud for fear of jinxing myself but my sickness is managed, the headaches are less and the dizziness comes and goes a will which means I'm in a whole better place than even a few weeks back so pleased that some progress has been made on my journey to improved health. A few weeks back though the first time I caught a cold I thought I was in trouble. I reacted like a man with flu. In defence of my over reaction I wasnt entirely sure that a cold was all of what I was experiencing and my head had fun playing games with my rational mind by trying to persuade me that all manners of horrors were happening. I calmed down after managing to assure myself that I would feel even worse if something had gone awry with the head plumbing and groundwork; great internal argument eh? I might feel crappy but not as crappy as I could or have felt! And yes I realise I'm sounding slightly crazy for my silent dual personality inner dialogue but hey the reassurance worked and my first cold has passed with only the advent of a few more grey hairs which don't really detract from my scarecrow hair, which is how my daughter describes my current look! One other new side effect of all this brain work is I am now more attuned to weather changes than ever before. I am like one of those little weather vane houses with a little woman on it. Thinking about it they had slightly odd hairstyles too so I may cultivate the look, my friend in switzerland will probably be able to get me some national dress outfits....Yes I know that with the easy availability of the iPhone weather app the kudos of being able to predict weather changes is lower than it probably was in the nineteenth century but I'm takin the positive angles anywere where I can find them. For the science lovers amongst you it appears that I am now ultra sensitive to the molecular pressure in the atmosphere....yep folks I can tell if it's going to rain based on the pressure I feel in my head! My theory is that I now have some air bubbles in my previously closed system. Now I'm not suggesting or asking the friends who live near me to tap me on the head a few times to get a decent reading but I'm pretty sure that thanks to James I will never again hang the washing out only for it to be rainwashed a few hours later. And if Im carring an umbrella you have been warned! I also suspect I will develop a slightly nerdy interest in air pressure as it directly affects how I will be feeling on a day to day basis but I suppose that will come in handy for a school science project at some point. Mr Raw would be so proud that my physics lessons are coming back to haunt me.

Friday, 5 October 2012

Ice cream life

They used to say you know you're getting on a bit when the policemen start looking young.

Well this means I must be ancient because I swear one of the surgical team doing my procedure last week was no more than 16. I was welcomed into theatre by a very hunky team of young men which was slightly disconcerting. I mean we all knew that in a few minutes I would be flashing my newly coiffured bikini line for them to send lashings of iodine mixture into the grey matter.

Its been a long time since i flashed good looking young men. Portugal 97 i think! Still we passed the time talking about the weather and such as we English do in situations like this and it went without a hitch. We await news of what the noodle experts make of it. I got to see counting nurse whilst back in, guess what? she still can't count, I couldnt resist checking!! I also almost did myself a mischief laughing at the hilarious reviews for men's veet hair removal on amazon. Esteemed MIL also found them amusing, I just don't recommend that amount of giggling when you're lying flat trying to be still.

James shunt has arrived at a setting that appears manageable and i wait in hope that at some point in my future there will be an intelligent shunt for hydrocephalus. A cross between Siri, the best app ever and probably invented by Dyson..(or RB). I can imagine it now.
Tifty, "what's happening in there James?"
James " your left ventricle is overdriving, I'm turning you down a notch"
How cool would that be? Predictive shunting.
Another cool thing that the Children were interested for a nano second was that Roald Dahl helped invent a cerebral shunt. A small fact we learnt at the end of a bedtime read of George's marvellous medicine. I was able to point at my head and for the first time rather proudly say," mummy's got one of them". It seems i am becoming more accepting of my hardware.

Time is still passing slowly with me. My physical world is smaller than the one I previously knew. If I walk too far then exhaustion finds me, if am somewhere noisy then dizziness jostles and unbalances me and if I think too much then everything seems to stop as if my brain is callng 'time'.
Hmmm, thats a thought, there is a ringing in my head that accompanies it, dont say James and the gerbils are runnng a pub!
All that said , there have been more better days than even just a few week ago so I try and steal parts of the day to catch up with people I love and whom make me laugh and to achieve small simple tasks. That makes me content. For now! Someone told me to 'eat the ice cream whilst it's in your dish and before it melts' so I think I'm living an ice cream life right now.

Mint choc chip flavour.

Saturday, 8 September 2012

Happy Annie

Today is exactly 6 months since my head pop.

Not sure if that is something to celebrate as an anniversary or not.

I Know that being here is definitely worth cherishing but the day itself...hmmm not sure about that. I am pretty sure my close family and friends who were with me back in march would prefer to forget that day entirely, me, well I can't remember it anyway so I have a head start. But here i am, the sun is shining and that was then and this is now.

It's been another few weeks of ups and down in the tifty house. James like any rogue racing driver is doing his own thing regardless of whether it suits my arrogant! so my shunt has needed adjusting , not once, twice but three times ( a lady?). It is a bit like adjusting your car tyre pressure, even the kit is a bit similar, And now we wait again to see if this setting is more suited to the gerbils pee rate..

Folks your brain is amazing, it rolls and moves and adjusts the fluid like a perfectly oiled machine, my brain with James Shunt however is a bit more crude and clunky, and yes on occasion noisy. No sudden movements for me unless I wants be dizzier than I was after too many champagne cocktails in NYC many moons ago. At times this makes me despair. My body is healing well but nausea and dizziness mean I can't take the walks or do the things I so desperately want to do. Patience, time, is my daiy mantra but blooming difficult to swallow sometimes.

The brain docs will be taking a peek inside my noodle at the end of the month to check that the platinum coil they so cleverly placed is still there...."what you mean it can move?" yes that was my reaction too. Apparently very unlikely but worth checking. So how do they take a look? Well obviously they go up through your groin!! So that's something I have learnt, non cutting brain procedures require a bikini wax as part of preparation so that its not embarrassing to face the surgeon the following day. Who knew?

Onwards and upwards, each day is new and full of possibility, ok some of them I just have to lie around doing very little but I've come so far already. 6 months ago I didn't die, and in my eyes that's a pretty super, amazing and fantastic thing to recognise and celebrate.

Tuesday, 21 August 2012

Up, down and diagonally

A truly gorgeous work colleague once described me as the team ambulance (which is better than the team bike I suppose). What I took her to mean by that is that people seem to be comfortable talking to me about their hopes, fears and worries which hopefully made them feel better. Having said that since having had my taxpayer share of blue lighted ambulance rides now I hope it didn't mean I am noisy, slightly uncomfortable , with sagging suspension!!
Anyhow I guess I have always been pretty open about my feelings, I   have always subscribed to the theory that a private fear if told aloud becomes less scary, that a spoken dream is more likely to be realised and that everyone deserves to hear that they're valued and loved....oh and if they're being a bit crap as well.  Over the years this approach has served me well and helped me understand how I am motivated to get through things that are hard. I know I need encouragement and gentle praise for a job well  done and this 'pop' journey started in a similar vein. The doctor telling me I was doing well lowered my blood pressure more than any pill, my friends and family words of support and encouragement ( and piss take) lifted my mood but something this time is different. There is no fixed outcome, pass mark or target to aim for, just small successes that change as how well I feel can shift each day. This time the fear I have sometimes wrestles my optimism to the ground in a head lock an Olympian would be proud of. Never before have I experienced something in my life  that makes me so uncertain of what step to take next,  or even how to take that step, or even if I can. I find myself adopting a new approach to coming to terms with the changes in me which I find alien at first;, slowness. Writing this was done over three days by taking tiny bites out of it. I can't concentrate or read for long so this way I still get the achievement of completing it just not in the way I may have done previously. I realised this because of a glorious old apple tree in our garden. Bear with me!! This tree lay itself down last week. It gradually lowered itself to vertical position over a few days as if it could no longer support itself in its current form. The tree surgeon came( cool they have surgeons too,) and said if we left it lying then in no time it would send up new shoots and grow in a different way but bear the same fruit. (see where I am going with this...?) Time and the openness to change is what I am trying to learn now from my more supine position. The tree? Well we had that chopped up for firewood for the winter.....but the root remains to explore its new potential.

Monday, 13 August 2012

A bit like 'Norm'

Anybody used to watch Cheers? Wow, I liked that programme, the cheesy song to which I can remember all the lyrics still, the on off Sam, Diane relationship and the rousing cry of 'Norm' whenever he entered the establishment. Recently I feel I have learnt a little what the Norm experience is like and the comfort of it. I , like most, never planned a future punctuated with hospital stays and illness yet here I find myself adjusting to this new state of affairs. In this altered life landscape I find that remembrance and recognition of me by a nurse or doctor is very reassuring. I ponder this a while and decide that the personal connection I may have gained on a previous visit I'm sure brings both of us confidence in how to treat and be treated. Knowing what lies behind the name , what they like, how they react, their style means I certainly feel more able to relax and take reassurement in my surroundings. It's not as alien. I'm sure Norm felt the same. True he got a beer in his surroundings and i may just have the morning after hangover but a friendly greeting by name means I'm much happier and confident being somewhere that uses my name. Only one small problem, girl opposite bed has same friendly greetings not all meant for me and worth dohble checking medicines are really for me

Tuesday, 31 July 2012

Why maths is important

The lull in my blog is due to two reasons. 1. The gerbils reacted strongly, some might say disgracefully to the introduction of James Hunt (shunt) into the gerbils nesting parlour 2. I completely forgot my password post operation! I am writing this entry now safely esconsed at home in bed after discharging from hospital yesterday. My hairstyle is now very ridiculous, (my hairdresser may refuse to cut it the on the grounds that it is beyond salvage). I have what the shunt guy describes as my shark bite behind my hear which is rather disturbing and enthralling my kids in equal measure and I also have a c-section style scar on my tummy...don't say the gerbils spread that far!! Anyhow onto the business in hand. It's very odd the things I Became focussed on when I was most poorly this time and maths became very important to me. I admit I've always been a bit of a maths geek,( apart from the time in Mrs C's class when I was 13 when I rather rebelled). Being able to quickly work out quickly the time the next pain relief was due was strangely comforting, and as it turns out very prudent too. Hopefully most of you have never have nor will need to spend time in hospital for any duration so will not know the rigorous regime for meals, meds, pretty much everything. Two days post operation I was doing a great impression of someone who'd been on a three day all night bender, it wasn't good. The last lot of drugs( all above board) were administered at 8 am and at 10am sweet hearted nurse came in with some anti sickness tablets. "how long should you leave between doses of this one?" I asked, "4hours" she replied. Beloved husband gallantly pointed out that the time was not yet upon on us and she left only to return at quarter to one with the whole shabang of my meds. Lying prostate and very feeble, the gerbils rampaging, I drew on the strength of hubby and formidable yet loveable MIL who were at my side, and my knowledge of drug routine to whisper "these aren't due yet are they?", "yes they are" she replied, " every 6hrs" " I know but it's been less than five since the last lot" I offered. She paused, considered , and then looked at me like I was completely confused( which I was but my maths chip was still working). She proceeded to hold up her fingers and said slowly for me, "yes, 6 hours, 8,9,10,11,12,1" peeling down her fingers to prove the point. " no 9,10,11,12,1,2" I disputed. She repeated her finger count much to the bafflement of all present until MIL stopped the strange scenario with an emphatic "they're due at 2pm". End of conversation. The upshot was, the drugs were delayed which whilst safer was a hollow victory as I really wanted them at the time. My learning out of the experience is a heightened belief in the importance of maths for anyone's career. Needless to say I will be spot checking my daughters mental arithmetic in case they follow a career in nursing. I should just say the majority of my nurses were superb, caring, attentive, angels in uniform and excellent at maths.

Wednesday, 18 July 2012

The gerbils

In March I came round from my 2nd major operation in the space of 24 hours a little bemused and bewildered. The thing that especially confused me was I had a pipe running out of my head. Funnily enough it wasn't the presence of the pipe that bothered me it was that about 2 inches above where the pipe exited my now partially shaved head, I had a dressing and what appeared to be staples in my scalp. It was like I'd been the victim of an office rage incident. I asked the loved ones why I had this hole in my head which was stapled (yep did i mention it was a hole?) and it was obvious that they didn't have a clue. Then knowledgeable and matter of fact big sister said 'that's the hole where they swapped over your brain gerbils'. Call me daft (my excuse was I'd just had brain surgery) but I was quite pleased with the idea that a new set of gerbils were now powering the wheel inside my head. It has made it easier to laugh this time round when the fluid built up, that the gerbils are the cause. My consultant has returned and now I learn something new, gerbils are creatures that require stealth and patience to train. His cunning plan is to wait and watch the pesky things and make sure they don't go back to their old tricks. This involves plenty of CAT scans. I sense a flaw with this cos surely it is unlikely we will spot the gerbils because of course they will be scared of the CAT. The odd MRI scan is thrown in for good measure to try and catch them off guard. So far they're lying low: probably out of it on the drugs! Last week I did try and eject them orally but to be honest I just felt totally crap and got bum injections for my troubles. And so we wait, if the gerbils pee less and my head doesn't fill up then I'll get to go home sooner, if they don't my lesser spotted consultant will be going into my head on a big game hunt and setting a trap for the little critters. Only time will tell. Either way I'm cool though would prefer not to have another shaved portion of hair when the other bits only ust growingback. Off now for a mid morning snooze , see if I can hear any squealing or scrabbling noises. x.

Monday, 16 July 2012

Things that go 'Ai,Ai,Ai' in the night

'why are you doing this?' 'Ai Ai Ai' 'Aaargh!' I've never been to the Amazon jungle in the middle of the night but apparently the pitch darkness is punctured with loud shrieks , yelps and screams. Over the last 10 nights I have been attempting to sleep overnight in a London hospital and the noise and sounds generated by a diverse group on ward is exactly how I imagine the jungle to sound. The difference being a bit more low level lighting! I have one ward mate, who for the sake of this blog I will call Wilomena. Wilomena is 92 years old and is like a nocturnal bird of paradise. I use the Bird of paradise analogy as her shrieks are Sharp, loud and frequent although she stops to preen any time a male nurse or doctor comes within 1 metre of her bed. The most interesting thing about Wilomena, other than the fact she flirts with any man, is that she makes her loudest screams at night. As soon ss lights go out the wailing and yelping begin. Please do not worry that she is in pain, she is being well attended to, it just appears it has become her habit to have this ritual each night. Other common and unwelcome sounds on ward at night include farting ( I join in this one to remain part of the pack) , snoring in all octaves, puking and the the soft distant noise of staff chatting and laughing. One thing I know about hospital stays that I didn't before my March head popping anneurism, is that while you may leave healthier than when you arrived you always leave more tired.

Sunday, 15 July 2012

Jurassic poo

Pain makes you constipated. Who knew? Probably lots of people out there had already made the connection between medication and your inability to , how shall I put it, have a movement. This week I have had a lot of drugs. Not in your hippie 'good shit' style, but purely to get pain to manageable levels. At this fine london hospital there is a team who deal with pain, seriously there is. No they're not dressed in S&M gear , more about them another time. Anyway the pain team told me added pressure in my nether region wasn't ideal combined with existing head pressure. It was clear that we needed to take action and come up with a cunning plan to restore normal deliveries. Learned and slightly abrupt doctor prescribed laxatives. Yuk! Much esteemed and seriously wise mother brought a bottle of syrup of figs. Hmm not bad! Beautiful and caring friend brought pineapple and cherries. Very tasty. With no hesitation I commenced the assault. With days I was delivering ice age poos. I use this description as they resemble fossilised berries. I knew that this was not enough and redoubled this point the cunning plan became flawed, maybe I over did it. Due to compulsory bed rest I was using the commode and soon came the day when I knew the commode was required for more a bulkier delivery. Well my combo of all three 'mover and shakers' worked and suffice to say I produce a Jurassic size poo, not once, not twice but three times. Success is sweet and I rebelled as the pressure one end was relieved sand not a little smug. There was a sting in the tail, whilst getting to standing after getting this load off my mind I omitted to notice the nurse had put down the footrest. Suffice to say that I for one brief moment wore the Jurassic poo like a Victorian bustle before it cascaded onto the floor under my bed and that of my unsuspecting bed neighbours. Ah well, normal service resumed in time for olympics , jolly good.

Saturday, 14 July 2012

One step backwards.

128 days ago life changed as quickly as a balloon can burst. I suffered a sub arachnoid brain hemorrhage and added complications of a fluid build up hyydrocephalus. These ramblings are not about the fight for survival which I experienced then but a sharing of my views ,feelings and experiences as I take a step backwards my first to date, in what, to date, has been an amazing recovery in a rollercoaster ride. Normal is an illusion let me tell you, but to set the scene, I had reverted to life at somewhat normal levels of activity albeit at a reduce pace to that I lived it at prior to March 8 th when my head went POP. Then last week I felt the tightening band around my head return. Yikes. This unfortunately could only mean one thing,it meant the unwanted extra brain fluid , or gerbil juices as I like to think of them, had returned. Fear of the unknown is tough , fear of what you know brings the added passenger of anxiety. For me it brought with it the memory of my previous experience. Let me tell you, gerbil juice overload is not the best ride you can take in this funfair we called life. I confess to being angry that it was happening to me again and a little scared of the pain I knew that would inevitably follow in the coming days. That was last Friday. Since that time I have had drain off of gerbil juice,not unlike to the first stage of an oil change I imagine. Undignified. Tick. Painful. Tick. I have slept on a ward with an ever changing array of women. Loud. Tick. Smelly. Sometimes. I have been sad, been happy, been sick. The one constant thing I am focussed is getting better....which I am. What's the next step. Well first is that my doctor who treated me last time is back from holiday tomorrow and maybe then we can come up with a plan to stop these gerbils peeing in my head. Until then I hang in there. I cope with the pain. I forgive my nurses for being dismissive or slopy shouldered in administering duties on the odd occasion. Until then I don't inhale someone's (or my own) fart , I eat the inedible food and sleep through the noise. Until then. Because I am thankful to be here at all so know none of the other stuff matters really. Love. Kindness. Compassion. Family. Friends. These are what matters in my life and again and again they reveal themselves so I know on Monday there will be a plan and a way forward. Onwards and upwards.