I’m sorry I’ve been absent for a while; this post (which is actually a running diary) will explain why. I’ve been keeping the following diary for three weeks now. I’ve lost my ability to connect to WordPress thanks to some technical problems which are affecting many bloggers. As a result I have to travel some way to get to alternative internet connections (right now I’m in a pub!) but as I shall soon be moving this blog to another host, that should sort the issue.
I could be wrong, of course. My shunt may not be slowly, but surely, malfunctioning. It could be the recent up-and-down weather or simply the need for a different pressure setting. But after thirteen years and over 19 shunt malfunctions, whether they were caused by holes in the tubing, gunked-up valves following a heavy cold, blockage, infections or holes in the head over the shunt itself, my Shunt Malfunction Radar is pretty finely tuned these days. It’s been nearly two years since my shunt was last fully revised, following two infections in six months and a CSF leak during which the fluid ran down my neck after escaping from an old wound. It took me about a year to recover fully from the infections (they were the last two horrible events after eighteen previous months of nothing but shunt problems) and so they really took their toll on me. But after that year of slow recovery, I cautiously felt capable of poking my head gingerly up over the parapet to see if the shunt malfunction coast was clear. And for a whole joyous year, it was. So the instant that my head turned from okay to really not okay, in the space of an hour one rainy afternoon three weeks ago, my stomach seemed to flop over with certainty that this was the start of something bad. Of course, when this happens, the natural course of things is to find other possible reasons for the sudden deterioration; after all, it’s not always going to be the shunt which is at fault. I’ve decided to log this one purely out of interest to see if I end up being right. I’ve done the usual routine; pushed the gut feeling that my shunt has suddenly started down the road of not working to the back of my mind and blamed the weather instead. I think my shunt is failing. I’m sure my shunt is failing. But hey, let’s not go down that road just yet! Let’s blame the weather! It’s plausible! The first heat wave in seven years! Followed by severe thunderstorms! Huge barometric pressure swings! It was probably the weather. Even my non-shunted , normal-brained friends were feeling the effects. Yup. It’s the weather.
I’m not so sure it’s the weather. It had looked so promising! My fellow shuntee friends on the Hydros Unite UK Facebook page (an informal, cheerful bunch of people with hydrocephalus; no whinging, no moaning, just a lot of jokes and serious support when required) had all had issues of one sort or another during and just after the heat wave. But now they were pretty much all okay. Except me. Okay, so maybe it’s not the weather. Maybe I’m dehydrated? Apparently people with shunts need to drink more generally anyway so that’s going to increase ten-fold during a heat-wave. I’ll increase my fluid intake and see what happens.
I’m not so sure I’m dehydrated. I’ve drank so much fluid I’m sloshing about when I walk. I’m a human reservoir. My head, if anything, is feeling worse. Today is probably the worst day so far; I don’t want to do anything. I don’t want to talk or to move. Lying on the sofa and watching Judge Judy back-to-back on CBS Reality is all I want to do and I don’t care who knows it. Today, however, is a work day. Thank God I work this job from home. Working from home is the only way I can hold down any sort of a job. Today I am lying flat on the sofa, ice pack on head, laptop on my stomach. It’s actually quite busy and a couple of calls that come through I let go to answerphone as my head is pounding so much at that particular point I can’t talk. I call them straight back as soon as I am able however. Now the shift has ended I’m knackered. Bed.
Two good days! Hurrah! It feels so much better. Also had emails regarding my Shunt Donation Project from Adam Zeller at Forth Medical and Mohamed El Asri from Sopysa; both involved with shunt manufacture and distribution. They are the latest recruits to the project; Mohamed is putting forward a proposal in September for me to his team and said he will be my ambassador. Good brain day and good shunt project day! I feel so okay that I’m going to go for a quick run. The bad symptoms were obviously just a glitch.
I’m not so sure it was just a glitch. I am, however, one hundred per cent sure that going for a twenty-minute run was one heck of a massive mistake. I went slowly, I avoided my usual hills – and after fifteen minutes I had to stop as my head suddenly seemed to wake up from its lull in malfunctioning and reminded itself that it was meant to be not working properly. So it resumed not working properly in full force, to make up for the two days it had missed. It’s now ten at night and I feel so ill I consider going to the local hospital. However, past experience has taught me that it’s far better to try and get to see Simon, my hydrocephalus specialist nurse if I can. I’ll call him first thing tomorrow.
Hurrah for Simon. I mean, SERIOUSLY, hurrah for Simon. Simon Thompson, Specialist Hydrocephalus Nurse at Queen Square, is an absolute saint. If any hydrocephalus patients are reading this, please take a word of advice; if you don’t have a Simon Thompson at your hospital, do request one. Since he came on the scene in 2008, the lives of so many hydrocephalus patients have been made sooooo much easier. His role is thus: he is our first contact if we have anything that we suspect is wrong with our shunts. I have his mobile number and his email address. If I wake up feeling ill enough to be worried, I text him and usually get a reply within minutes. Or he’ll call within the hour. If he can, he’ll arrange to see you, sometimes the same day or at least the same week. This way we get to bypass our local A&E departments and getting tied up in the lengthy and often – as far as hydrocephalus treatment is concerned – inadequate system there. Every hydrocephalus patient needs a Simon in their lives. The fact he’s a lovey guy, very easy to talk to and is someone you can have a laugh with tops it all off nicely. Today I spoke to Simon at nine in the morning and he immediately told me to come in for a chat at this afternoon at two. So today I had a good long talk with him; he checked the pressure setting – it hasn’t slipped. He ran over some options with me and we both agree do to take a ‘wait and see’ approach for the next week at least. My head is so pressure –sensitive that messing around with the pressure unless absolutely necessary is best avoided. We don’t want to upset the apple cart. One thing is for sure, my head did not like the journey there and back. Tonight I am working. I am hoping for a quiet night although, again, I can at least do my job from my temporarily resident place on the sofa.
I’m just about to enter week two of a very up-and-down but steadily worsening head situation. It’s nine at night and I had an eight-hour work shift today. Even lying on the sofa didn’t help. Luckily it wasn’t too busy. I can’t tell what the pressure is doing; nothing helps. Diet Coke made the head pressure worse. Staying upright didn’t help. Lying down didn’t help. Not moving didn’t help. I can’t wait and see anymore. Tomorrow I’m going to see if Simon can change my pressure for me; then we can take it from there. This sucks. I had honestly forgotten how horrible shunt failure is. Trying to stay positive: big fat fail.
Called Simon at nine; he asked me to be there by two. Mum offered to come with me but I wasn’t feeling as hideous as last night so I told her not to worry. By the time I have stepped off the train at London Victoria, however, I am starting to feel terrible. Half an hour later, I meet Simon. He looks at me a bit alarmed. ‘Are you alright?’
‘You certainly don’t look very well’.
I manage to put one foot in front of the other past the rows of waiting patients; I can feel them looking at me. I must look like absolute shite. Once inside the consulting room, Simon orders me to lie down. I fall onto the couch like a sack of potatoes. He tells me to rest and talk when I’m ready. About ten minutes later I do start to feel a bit better so we chat about what to do. Both of us are again agreed; let’s leave surgery as the last possible option and investigate all other possibilities first. Given that I feel so terrible, people reading this might wonder why I’m not admitted to hospital on the spot. But Simon and I have been working together, pretty continuously, for five years. We know my head. We know that surgery on a brain as sensitive as mine could create more problems than it solves. I know I’m pretty unique in this; Mr Watkins has told me on numerous occasions that I’m one of the most pressure-sensitive patients he’s ever had. He does the tiniest thing to my brain and it reacts as though he’s just started World War III in there. The fact I’m so sensitive is due to excessive tampering with a previous surgeon; he spent months adjusting my shunt every fortnight and my pressures swung from high to very low to dangerously low to high again; as a result by the time I finally (and thankfully) reached Mr Watkins, I was in a bit of a state neurologically. The damage had been done and now it’s a case of trying to manage it. Barging in with surgery number twenty would only be a good plan if we had a clear idea of which direction to go in and what was needed; right now we have no idea. Simon suggests turning up my pressure by 1, from 6 to 7. I agree and had hoped this was all he would have suggested anyway. He changes it within seconds and is clearly impressed with my fantastically positioned shunt valve (‘you have such a perfect shunt to change; we should use your head as a tool for students to practice on!’) and tells me to call him immediately if I become very ill. Now I’m home, on the sofa as per usual, working as per usual. Head is a bit all over the place but then it doesn’t like travel at the moment. It likes to be perfectly still.
An uneventful few days of taking it easy, feeling pretty naff and feeling frustrated. Experimenting with Diet Coke and lying flat has led me to believe that I certainly am overdraining at the moment. Lying down I feel better. By late afternoon I feel crap. By evening I go to bed. I can hardly even be bothered to type this. Nothing to report anyway really apart from a pressured head. Sometimes I wish my shunt failures could be acute and severe; they’re ghastly to go through but at least the problem is identified, sorted and resolved very quickly. This dragging on for weeks without feeling remotely better is hard to stay cheerful with. I do, however, count my blessings every day. The work I’m doing on this project makes sure of that. At least I have a shunt. I have Simon working closely with me to ensure I don’t deteriorate any further and that I get the correct treatment. I have Mr Watkins who’ll issue me with a brand new, shiny shunt if it’s needed. The thousands of children I’m trying to help overseas have diddly squat. The thought of them going through this with no hope of ever feeling better makes me feel sicker than I already do. I feel terrible because I’m just not able to work on the Shunt Donation Project at the moment. I have people to chase up but my head feels woolly and stupid and I can’t remember anything. The surgeons in Kijabe are patiently waiting for their shunts and Codman UK have gone all quiet on their progress reports. I hope they haven’t changed their minds; they promised me forty shunts. If they’ve changed their minds, then fine but I need to know so I can let the surgeons know and start to try and source some shunts from somewhere else to get to them. Because those surgeons will get the shunts I promised them. Letting them down is not an option. I need to get better so I can crack on with this.
Dilemma. I had bought my Dad a wine-tasting tour back in March for Fathers Day. It was for the four of us. Only we had to cancel as Mum was having a nightmare with a lost tooth and pain from the treatments associated with it. We postponed it till August. And now here we are, it’s wine tour day and my head is not feeling like going on a wine tour. It’s not that bad but not that great. Do I stay behind or do I go? It’ll be an hour on the train each way. To be honest I’m so bored after nearly three weeks of staying indoors that I’m desperate to go. Obviously I won’t be partaking in the wine bit but this is for Fathers Day. And I have the best Dad. He’s been right by my side every awful minute over the years, literally drops everything to help someone and is gloriously funny; everyone should go for a beer with my Dad. They’d have the best time. I decide to go. It’s only a few hours.
Thinking my head might be able to handle train travel again; another big fat fail. The tour was very interesting but standing in a vineyard, on a high hill, in buffeting winds, following a journey of an hour-and-a-half, was not great for my head. The smell of fermenting alcohol didn’t help matters. Enough trying to carry on as normal. For the next week it’s nothing but rest until my head adjusts to the new pressure. Then I’ll be able to tell what I need to do.
Well, that’s decided. I’m on the list for ICP monitoring. Simon sent me a text today to confirm this joyous news. Bleurgh. ICP monitoring is such fun. It involves a wire with a probe on the end being inserted into your brain and then bolted in. The other end is then plugged into a machine which reads the pressure readings inside your brain twenty-four hours a day, usually whilst your surgeon experiments with pressure settings on your shunt to see what it’s doing. The picture here was taken a few years ago during a previous boltage-session.
It gives a pretty clear idea (usually) of what’s going on but it’s boring as hell and I’ve never had it yet without having a sizeable surgery at the end (and I’ve had the monitoring done nine times now). I see a shaved head a-loomin’. On one hand I’m disappointed that this is happening but that doesn’t last very long; since I started working on this Shunt Donation Project, I’ve just become so grateful that I live in the UK, that we have the NHS, that I actually have a shunt and that I know my surgeon won’t give up on me until I’m fixed that it’s hard to feel down about it. I feel frustrated a bit that I only have two months before I’m forty and I still have to go to Paris! My F-List is not completed yet! Maybe I can cram it in….a couple of nights away would be lovely, seeing as I haven’t been abroad for nine years. Although we’ve had such lovely weather this Summer I can’t complain. It’s quite nice here in the pub; it’s busy, full of people eating gorgeous-smelling food which is making my mouth water. Take That are singing ‘Rule The World’ on the music system. I fancy Howard Donald something rotten. He is literally the sexiest thing on two legs, apart from Michael Fassbender. The sooner that either one of them realises just how good we would be together, the better. I wonder if they dig females with shaved heads?
Not much to report head-wise, except that I’m no better. However, I do think it is definitely overdraining that is the problem as I certainly feel better in the first few hours after I’ve woken up in the morning; evenings are non-events. Once more life is on hold; how many times have I done this waiting game over the years? I have decided to wait until Simon is back from paternity leave (in two weeks time) and then have the setting on my shunt adjusted again up to eight, from seven. Neither of us are holding out much hope that that’s going to be the magic solution, but we both think it wise to try one more setting change before putting me on the anaesthetic list. Also, low pressure is safer to leave alone for a while than high pressure. And this is why I am now convinced the pressure is low rather than high; because I don’t feel that panicky, we-need-to-sort-this-right-NOW feeling that you get with high intracranial pressure. High pressure is dangerous, so the body goes into fight mode for survival when it occurs. Low pressure can be dangerous if severe but I’ve had severe many times before and this episode isn’t. Unpleasant, yes. Tiresome, yes. Exhasting, yes. But it doesn’t feel dangerous so I know we’re not at panic stations yet. I can (hopefully) hang on a fortnight. Then we can get a proper plan in place.
I’m getting confused. Is this week five or week six of feeling grotty? See, this is what happens when you’re waiting for surgeons to come back from holidays; you have to stay home a lot and that’s when the daily routine becomes so repetitive that you start to lose track of time. I think this is week five. But I do know that it’s Tuesday, because it’s a work day (Wednesday is my day off). I feel particularly overdrained today. Diet Coke is only moderately helping and I have no appetite, everything is throbbing between chest and top of head and I’m stupidly tired; that is, tired to the point where I feel stupid. Yesterday wasn’t too bad. I went with Dad to view some potential venues for my fortieth birthday party – which I’m putting back to November in anticipation of me not feeling well enough to do anything by October. Trying to plan a big party whilst feeling like shite isn’t all that easy but I have to keep visualising of feeling BETTER by then, of my shunt WORKING PERFECTLY and of me being able to BOOGIE LIKE A DEMON. That helps me stay focused. Sometimes you have to keep your eye on the end goal and carry on regardless. I am also sorting out a meeting with a lovely friend who just happens to be a high-end project manager and who has kindly offered to help me sort out where to go next with the shunt donation scheme, as I need to meet with Lewis Thorne this week. I have placed bets on Lewis and myself having to hold our meeting at my hospital bedside at 2:1.
I think Simon is back this week from his paternity leave. I’ve left him two messages asking him to contact me on his return so I’ll send him another if I haven’t heard back from him by close of play on Tuesday; he’s going to have a lot to catch up with after two weeks off. I am making arrangements for a live-in cat/house-sitter. Hoshi will NOT be happy; she gets very stressed when I go into hospital and she’s left with a stranger for weeks on end and always attaches herself like a limpet to my neck for a fortnight when I return. I have now fine-tuned my routine; get up, get showered and dressed (never loll about in pyjamas when feeling ill if you can avoid it; it only makes you feel worse), drink measured amounts of Diet Coke until around 5pm, don’t do anything or go anywhere (unless you’re being driven somewhere by some kindly soul) and accept the fact that by evening you’ll feel like shite. Your brain will also be mushy so don’t even try to engage in intelligent conversation by this time, or watch anything but your favourite, familiar films. This Shunt Malfunction has been sponsored by the 1995 film, ‘Sense & Sensibility’. I have watched it nearly every night. Yes, every night. I love it. It’s pure escapism. Although I am glad I wasn’t living in Ms Austen’s time; no deodorant, no toast and Marmite, no shunts…life would have been miserable most of the time. Apart from hours spent running up hills in the rain wearing long dresses and being rescued by Greg Wise – sorry, Mr Willoughby Of Alanum – galloping onto the set on his charging steed, before carrying oneself home in the pouring rain.
That never happens on my rain-soaked trudges back from Tesco. Maybe it’s my choice of bonnet. I’ll try the pink one next time and see if that gets me swept off my feet. Having material such as ‘Sense & Sensibility’ is crucial during times of bad shunt behaviour. I have so many memories of lying on the sofa over the years, either waiting for a bed to become available at the National or recovering from surgery-number-whatever, watching repeated films of choice. For a while it was Bridget Jones Diary. Then Mum brought me the boxed set of ‘Pride & Prejudice’, with Colin Firth. Then ‘Sense And Sensibility’ got in on the act and that’s remained my favourite escapism film. I am a little alarmed at the typical chick flick theme running through my choice of ‘ill-so-need-a-distraction’ films. Basically, single woman finds gorgeous guy to rescue her, whether it’s Colin Firth as Mr Darcy (Bridget Jones’ Diary), Colin Firth as Mr Darcy (Pride & Prejudice) or Alan Rickman as Colonel Brandon (Sense & Sensibility; Greg Wise is dashing as Mr Willoughby, but Mr Willoughby turns out to be a complete shit – sorry, I meant to say ‘the worst of libertines’ – to quote Colonel Brandon). This is literally the only time I entertain any thought of a dashing man coming to ‘rescue’ me; when I’m sick. For the last two years, since I ended my three-year relationship just before my last big shunt infection, I have avoided dating like the plague, simply because it’s been such a joy to have some space, to feel well, to get on with what I had wanted to get on with. It’s been a lovely time and I’m certainly not wanting to date again yet…but a couple of hours watching wet women being lugged about by strong men across rain-lashed fields, dancing at balls (watching men skipping whilst wearing tights is always going to bring a smile to one’s face, let’s be honest) and shrieking lines such as ‘he loved me as I love him!’ is perfect comfort-viewing. So later today I shall be doing just that. I haven’t missed one day of work thanks to being able to work from home, which is great. But I must admit I’ve had enough of being patient and waiting for key medical staff members to return from leave/holiday and am ready to get my head sorted and return to good health. I shall keep you updated; my next photo of myself may involve a bolt sticking out of my head. Don’t show that to Colonel Brandon please.