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.

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.

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 needs...so 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.

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.

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 name...so friendly greetings not all meant for me and worth dohble checking medicines are really for me

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.

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.