At last! At long flipping last! I actually feel a little better in the head department. When I left hospital in October last year following my month with a bolt in my head, I didn’t feel much better than when I went in and certainly not as improved as I usually do following surgeries. It has been a challenge sometimes to believe that I would get better but sometimes you have to believe in the positive. Even if you have to force yourself to. Anyway, yesterday I managed to go for a run…the first run in six months. Oh, how I’ve missed it. It hurts my head when I run; the pressure can go a bit mad and my face tends to turn a worrying shade of purple, like a grape. It’s not attractive. But afterwards I always feel fantastic; I sleep better, my headaches are generally easier and I can eat cake without having to worry too much about it as my metabolism is so much faster. My surgeons know I run daily most of the time and have never told me to stop. So yesterday I felt very jubilant because before that there was no WAY I could have run; I was having difficulty even standing up from a sitting position. I had a pressure reduction in my shunt six days ago and I can feel the improvement slowly but steadily going on. Until this week, my bed was raised on two bricks at the head-end (I couldn’t tolerate lying flat) and every time I’d go to stand up the pressure would go too high for me to tolerate. So I told Saint Simon, who ordered me to come up the next day and he changed it for me. And now my bed is only on one brick and I can stand up a lot more easily. I think I’ll need one more pressure reduction in the next couple of months and hopefully that will be it. But oh, the relief of starting to feel better after almost a year of feeling constantly exhausted, headachey, pressured and sick. I’ve even taken on an extra work shift. Get me.
And now it’s shunt project time! Kim Nguyen Browne from Go Vap Orphanage has a much-needed brain scan for me of one of the orphans there who was born with half a brain and who was successfully shunted. Usually the children born with these sorts of complications are left with no treatment at all. Kim has unfortunately been very ill so instead of being in Vietnam right now as originally planned, getting the much-needed figures from the government, she’s staying here to recover. Poor thing; she’s missed the children she usually sees over there so much but her health comes first. Health always comes first! Given the change of circumstances Kim has asked if I can deal with the government in Vietnam. Me. Little old me. Oh, God. I’m meeting with her soon to collect the scan and to get a crash course in liaising with the Vietnamese government. She thinks my dealing with them will speed things along as she’s still too ill to do all this – which makes sense. But I feel the same way now that I did when I initially started this project; that I’m way out of my depth and have no idea of what I’m actually doing! Of course she’ll help me and will be there for support. And obviously I have Lewis on board now too so I’m not doing this alone. But it still scares the crap out of me. I can barely understand the motivations behind our own coalition government most of the time but at least they have a healthcare system which actually treats sick and disabled children (as long as they don’t dismantle it in the next few years). Trying to bring about change in a health ministry which has run the same way for years and doesn’t seem to have the motivation to treat sick and disabled children feels like it’s going to be a challenge to say the least. But then I knew my present recovery was going to be slow and drawn-out – and I was right. But I’m getting there and things are slowly improving. Pigeon steps forwards. But steps forwards nonetheless. I think we can apply that to foreign health ministries, right?
Er, Excuse Me….But Where Did The Year Just Go?
December 5, 2013
Sorry I haven’t updated for yonks, but I had forgotten during my nearly-two-year-surgery-break how long a recovery takes! Because I didn’t end up having a massive surgery I thought I’d bounce back quickly but the very unexpected deterioration after having the ICP bolt removed obviously made its impact known.
‘Helping’ by sleeping on the decorations.
I can’t believe it’s December; the year seems to have had a ‘blink-and-you’ll-miss-it’ effect. I’ve had two more trips back to hospital since I left; the first for another pressure adjustment (downwards) and the second one just a check-up to discuss things. The plan is to leave me alone over Christmas and the New Year (hurrah!) and try another adjustment in January. I’m currently on setting eleven; my surgeon thinks I’ll end up somewhere around setting eight. Funnily enough, when I was on setting eight before, between the end of 2009 to 2010, it was the best I had been. That was before two shunt infections decided to have a bit of a party inside me and to royally screw everything up. But that setting eight period – it was indeed good. So fingers crossed I’ll get back to that place but it’s going to take about six months to a year apparently. You can look at that one of two ways; six months to a year of feeling ill, tired, nauseous and frustrated. Or six months to a year before I’m back to my best-ever physical state. Can you guess which viewpoint I’m going to adopt?
I had another meeting with Lewis Thorne last week too; I like his working style – he was wearing jeans with very funky Argyle socks pulled over the top and no shoes. A man after my own heart; comfort equals a productive work day. When I’m working from home (which accounts for ninety per cent of the time), I wear slippers and lounge wear.
See? I wasn’t kidding.
Stylish of course – I can’t work if I look and feel like a slob (which is never, just for the record!). But the second I come in from a meeting, I strip off my smarter work clothes and get comfy. It’s a bit like a cluttered home reflecting the state of your mind. I’m a bit of a minimalist as I cannot stand clutter. I have enough furniture in my home with ‘touches’ to feel homey and cosey. But that’s it! Anyway. Back to Lewis and his socks. We had a good chat about everything and went over the more problematic areas of the shunt donation scheme. Lewis is brilliant at making things seem do-able. I asked him if he thought I was worrying unnecessarily about one particular issue and he said yes. I kind of knew that all along but it’s good to have clarification! We each have our ‘homework’ list of things to get on with and will meet again in January. And I think this time I’ll take my slippers with me. We did have a moment regarding the proposal for the Vietnamse government where we looked at each other with realisation of just how big a task this was going to be. We may be passionate about this but we are also realistic! Just getting hold of the information we need in order to put together the figures for a water-tight proposal to really persuade the health ministry to invest in the treatment of these babies and children is not going to be easy. And of course there is no guarantee that it will work. But nothing ventured, nothing gained. I shall update more when more has happened because at the moment it’s just lots of phone calls, emails, figures and reports which is on the face of it pretty boring!
So it’s December, it’s nearly Christmas, my decorations are nearly done (bought the wrong-size tree lights so need to get the right ones today) and I’m loving the Winter weather, cosy evenings and candles. I’ve decided to do the Photo-A-Day Challenge for December; my friend Jolene does it often and I always think ‘I really must do that sometime’.
Day 1: Red.
Then I go to the fridge and see Mr Samandouras’s quote (written on a Post-It) stuck on my fridge; ‘you know how they say “good things happen to those who wait”? Rubbish! Nothing happens to those who wait! Good things happen only to those who take action.’ Having a chronic condition can make one more prone to procrastination – well, it is hard sometimes to get all motivated when you actually feel like throwing up – but it’s just a case of frequently referring to quotes like that to keep your mind on the ball. The photo challenge is detailed here ; you simply take a photo a day based around the one-word description set for that date. Sometimes you have things to hand so it’s quite easy. Sometimes you need to use your imagination a little more. So I started it on December 1st.
Day Two: Where I Stood.
And I’m just finding out how difficult it is to take a photo a day when you have a Burmese cat around who a) always wants to be in shot and b) always wants to be in shot. What I have also found out is that doing it really makes you view the world in a different light. You start to look at your surroundings and try to figure out if they’d work as a photographic composition.
Day Three: Silver.
As you can see, Hoshi insisted on being in shot on the second day. She doesn’t like candle flames so the first day was easy. I’d already removed her three times from that bannister as she was ruining the angles and lines I liked in that shot; in the end I gave up and just let her sit there and scowl at me. I’m yet to upload yesterday’s and today I don’t know what to do; the title is ‘In The Cupboard’; all I have in my cupboard are tins, teabags and a loaf of bread! Thinking cap on. I’m very tempted to let Hoshi have her way with this one and just let her get in the cupboard. But that would be too easy. Shame I don’t have access to a fake plastic skeleton…….
There’s No Place Like Home; Dorothy Was Right About That.
October 22, 2013
Hospital Then Home Sweet Home….
Yay! I’m home! Three-and-a-half weeks in hospital, one ICP bolt, six pressure changes and one nasty post-operative episode later, I am home. I love my home so much that it’s very hard to leave it, but even better to return to.
My little house…soooo pleased to be back!
As you will know if you read this blog, I’ve been struggling with bad symptoms for a few months now and the recent stay in the National Hospital was to determine just what was going on (if anything) with my shunt. I’ll keep it short due to having been in there for weeks; we’ll be here till Christmas if I tell you everything in detail. I had an ICP monitor placed in my brain on my second day there and that stayed in for three weeks. An ICP monitor is a probe which sits in the brain and which, when hooked up to a monitor, reads the intracranial pressures every second. It charts them out as a graph as well so that neurosurgeons can look for any abnormal patterns or pressures. There is more on ICP monitoring in a post I’ve nearly finished, with a video of mine being removed for anyone who is facing their first and might be a bit worried about what it all entails. I’ll link to it here once it’s finished in the next couple of days. Once the bolt is in your head, it looks pretty odd but it’s okay. Here’s a picture of me totally rockin’ the look.
It’s a winning look, let’s face it.
This time around the pressures were very low to begin with, so Mr Watkins tried increasing the setting on my shunt in stages initially to try and get the pressures to read a bit more ‘normal’. However..nothing happened. I was on setting six to begin with and by the time we’d reached setting thirteen, still nothing was happening with the figures on the monitor screen. The only thing happening was my brain going into a tailspin of pressure every time the shunt was adjusted. We discovered that increasing the pressure in twos or threes wasn’t doing me any good; my brain clearly doesn’t like being tampered with on any level so we resorted to increasing the pressure just one at a time and giving me a couple of days to recover afterwards before we moved it again, hence the long hospital stay! When we reached setting fourteen, everything suddenly started to shift and within hours I had high pressure symptoms, which was odd to say the least. Mr Watkins thought that maybe my brain didn’t need the shunt now as much as I had done before, but that didn’t explain why nothing happened on settings six to thirteen; if my brain was draining partially on its own now, that would surely have been reflected on all the shunt settings, not just number fourteen. I am now on setting twelve and that is where I have been for two weeks. The team agreed that I needed to go home and rest my brain, especially after the ICP probe was removed; my head didn’t like that one little bit and I became very ill (which is very rare as I’ve had about eight or nine bolts removed with no problem whatsoever). Setting twelve is now proving to be too high so tomorrow I am going back to the National to see Simon and have the pressure reduced to setting eleven, to see if that starts to help. I really want to get back to normal so I’m praying that it does. So for the last week I have been resting and chilling out in my lovely little home, pleased to arrive back just as the turn of the season is about to commence.
Yes. Sheep and the Tardis in the field next to my home. I don’t get it either.
Autumn is one of my favourite seasons, along with Spring. The trees are just starting to turn from green to golden browns, reds and oranges and the air is full of the scent of Autumnal bonfires. The squirrels are back, sourcing their Winter food supplies for their kitchen cupboards and the whole countryside is full of earthy, woody, rainy, smokey scents. Blissful!
Lovely Autumn evening light
I adore the Winter months; don’t get me wrong, warm sunshine on your skin can feel great but I’m always relieved to leave Summer behind as I can’t tolerate heat too well; my loves are the rainy, foggy, crisp, cold, snowy Winters and the Autumns which proceed it. Of course, living in the countryside helps fuel my passions! I get all the glorious scenery and wildlife here too. My cat, Hoshi, is pleased to have me home and that’s a slight understatement. I had an excellent cat-sitter staying here for two weeks and the remainder of the time my Mum and a friend stepped in. A plus point of living in such a gorgeous property in the countryside with a hot tub in the garden is that people are more than happy to come and stay in it whilst feeding the cat.
Hoshi. She likes to warm her bum on my laptop for some reason.
I haven’t been able to get Hoshi off me, to the point where I look as though I have grown a furry appendage as she’s constantly lying across my shoulders as I go about my business, looking like some strange furry fashion accessory. Which purrs.
Two good things happened during my hospital stay which were totally unrelated with my head. Firstly, Lewis Thorne (the neurosurgeon who is assisting me with my shunt donation project) came to see me on the ward (‘social visit!’ as he put it) and after general how-are-you-and-what’s-happening chat, he told me that he’d sourced some expired shunts in the National that he was putting aside for us to send out. Hurrah! From what he said it sounded like there were quite a few of them. He’s on leave for a bit till early November so once he’s back I can hopefully go and have a look at them and get them out to countries in need. Hurrah for him. I also had an email from a donor I’m not allowed to mention because they would rather be kept secret, but it’s from a lovely hospital who also emailed me to say that they have a lot of surgical equipment for use in neurosurgery to give me. Some UK guidelines have recently been amended so they cannot be used here anymore but they are certain they would be absolutely fine to use in areas lacking in equipment. I am meeting with the donor tomorrow morning to have a look and pick them all up, then when Lewis is back I’m going to ask him for a little lesson in ‘identifying totally alien neurosurgical utensils’, as I didn’t recognise anything that was mentioned and don’t have a clue what it all does! So…shunts AND surgical equipment! T’was like Christmas.
The other good thing that happened involved another neurosurgeon. George Samandouras also works at the National and (I am certain) oversaw a fairly major surgery of mine in 2011 when Mr Watkins was out of the country. He writes a blog about his work which I stumbled across at the beginning of this year and it was through reading his blog that I became inspired to start this one, to log my shunt donation project and to keep myself motivated. Mr Samandouras includes amazingly inspiring quotes (his own!) in his blog and I was so impressed by some of them that I wrote a few of them out on Post-It notes and stuck them on my fridge. One is ‘it’s fascinating how human beings allow our performance to be affected by what other people might think of us! I find this extraordinary’ (this one helped when I worried about being laughed at by senior neurosurgeons who might think I was crazy in trying to stop the disposal of perfectly-useable shunts). The other one (which I still have up) is; ‘you know how they say “good things happen to those who wait”? Rubbish! Nothing happens to those who wait! Good things happen only to those who take action.’ Brilliant. Every time I felt myself slacking on my project, I’d read his words and get back to it. Anyway, having read his blog avidly all year (re-reading it often too), he walked onto my ward the first week I was there. He was treating a lady opposite me and he came to talk to her. He was there some time and I went to the bathroom and was thinking about everything I’d gained from reading that blog of his, how he had literally inspired me into action and as a result (hopefully) my dreams of getting unused shunts over to children in need might be realised. As I came out of the bathroom he was leaving the ward, walking towards me. I wanted to thank him for writing it, for inspiring me so much…but I became completely and utterly tongue-tied! Some people get star-struck meeting Madonna or other such celebrities; I become star-struck at the prospect of meeting Mr Samandouras! I quickly told myself to stop being such a loon and stopped him, introduced myself and thanked him for his blog and his inspiration.
I stand outside the hospital some evenings when it’s calm and quiet; it feels very safe to be here.
He was, as I predicted, totally charming and engaging and seemed genuinely interested in my situation; not that neurosurgeons are not genuine, only I didn’t feel he was just being polite. I want to link his blog to this one if he would allow it so I’m going to ask his permission first. But in case he’d rather not, I urge you strongly to look him up on Google and read the blog word-for-word. It doesn’t matter if you’re not interested in brains! He talks about all manner of things which inspire him, from music to travel to writing with a fountain pen. I promise you it’ll be time well spent. The man doesn’t have twenty thousand followers for nothing! (Update as of 24th October; Mr Samandouras emailed me this morning to say he’d be happy to link his blog to mine and also congratulated me on my ‘very well-written blog’. I went as red as my hair so it’s a good thing nobody could see it. Here is a link to his blog: please read and enjoy).
So tomorrow it’s back to the National…today I am feeling pretty rough so I am hoping that the adjustment will take me in the right direction. There may be no place like home but there is also no place like the National for when you’re feeling brain-weary.