Good times...

Where to begin... maybe perhaps with the news that we had a lovely anniversary/birthday weekend. Thirty years of marriage deserved celebrating in style so we did. A four (or was it five?) star hotel next to Hyde Park and tickets for the Hard Rock Calling festival.

The weather was kind to us - in a weird and wonderful sort of way. Friday night saw the most enormous sustained downpour but we were well prepared with wellies and waterproofs and guess a lot of people must have stayed away as we could get to the front and lean on the barrier. We saw The Killers supported by the Kaiser Chiefs and it's difficult to find the words to describe how awesome they were - especially when the confetti cannons and fireworks kicked off during "All these things..."

Saturday the sun shone and the temperature rocketed. We braved the sales at Harrods and Harvey Nicks before hanging out in the park with a picnic waiting for the guilty pleasure that is Bon Jovi. They rocked the place for three hours ending with "I Love This Town". Don't we all...?!

I'm sure some people reading this will be thinking this was utter madness, and asking how did my back cope with it all? The simple answer is we bought the tickets last year (originally I had hoped to go to South America for our anniversary), and nothing was going to stop us getting to this! I leant on barriers, or on Ian, dosed myself up on painkillers (and wine) and tried not to let the pain get in the way.

Sure I was gutted not to be in the midst of the crowd throwing myself around like a mad thing the way I used to. But I had to keep reminding myself it was a miracle I was there at all!

We managed a few other treats too - late night red wine and chips watching Glasto on TV; room service breakfast one day and a greasy spoon the next; ices in the park, home in time for a bottle of wine on the decking and surprise visits from all the children. Things could be a whole lot worse!

Another Day

Well here we are again, and happily today was about 150% better than yesterday. Thanks for all your lovely messages - most of them on The Book I see but that is fine - commenting on an actual blog does seem to be more complicated with the need for an account and everything. I hope you don't mind me asking for comments btw - I think it is something to do with this feeling that if you don't get feedback no one is listening, or interesting, or cares. Which is probably me being paranoid as of course I know that I have lots of good friends - if you are reading this then that includes you - who are sending prayers, good wishes and positive vibes my way. Thank you. And please forgive my craving for some kind of response.

Moving on... or back for a moment. I meant to write about a couple of lovely things that happened yesterday. One in particular. I forgot, but it is not too late so here we go...

After the tube journey back to the office yesterday I was feeling a bit rubbish. That's not unusual when you have travelled on the Jubilee Line but yesterday particularly so. Everything Mr Tucker had said was swimming round in my head and I was wondering who I would bump into first on arrival in Lower Marsh. I'd have put money on me bursting into tears the first time someone said "alright...?" which seems to be the 21st century equivalent of "good afternoon..."

There must be at least a couple of hundred people in the Christian Aid office on any given day. Allowing for those on holiday, off sick, taking flexi or, this week, simply watching Wimbledon - sorry, working from home (!)

But who was the very first person to come out of the office - heading to the postbox? Well I won't name him here to spare his blushes but a very lovely colleague whose wife happens to have had the same surgery for scoliosis that I had last year. Quite a coincidence, and a very lovely one as yes I did cry but yes he gave me a hug and yes he took me into the local cafe for a cuppa. Nice.

And nicer still, in came the colleague who organises our staff prayer meetings, who I was just thinking of writing to. Prayer's a funny old thing - sometimes when I feel a bit better I put it down to people praying, then it gets worse again and I wonder if they stopped. Sometimes if it gets a bit better I wonder why it can't be completely better. And sometimes I think if it really does work and all those people are praying for the Middle East.... and then I think maybe best not to think like that as it doesn't help anyone. What does help - hugely - is the knowledge that people are praying. And that knowledge in itself helps me cope. So it works.

So - back to today. A much better one. Interviewing lovely people with lovely colleagues, then a meeting that ended up in the pub with chips and a glass of wine. Home, a hot bath and an early night - up early to try and get those Olympic tickets!

Plan has to be to take one step at a time. No rush to do anything drastic too soon. CT scan first to try and pinpoint any pseudarthrosis, and if there is none a decision re removing the metalwork. Funny how attached I feel to it now - the thought of having it removed is not one I particularly enjoy. There's a certain reassurance in knowing the scaffolding is there to hold everything in place and I think I would worry that without it my spine might start to curve again. Pain or no pain I like being able to breathe more easily, and I love wearing dresses :-)

That's it for now - off for a weekend away to celebrate our 30th Wedding Anniversary. And being the ageing rockers that we are it will be spent at one of the biggest summer festivals! No, not Glastonbury, Hard Rock Calling! With accommodation in a luxury hotel adjacent to Hyde Park, soft beds and showers! We'll see Kaiser Chiefs, The Killers and Bon Jovi - bound to take anyone's mind off a spot of pain - especially if we share enough champagne!

Thanks for listening and speak again soon.

Linda xxx

Loooooong time no post...

Ooooh - where do I begin? Been way too long. Often I form a blog post in my mind and vow to commit it to virtual paper at the end of the day, but somehow day turns to night and then to morning and yet again I've written not a word...

It may be a bit like when you really need a wee (sorry if this is too graphic ladies - and gentlemen) and you put it off and put it off and put it off 'cos you know once you go that will be it and you'll need to go again and again and again. "Breaking the seal" they call it (who "they" is I have no idea...) and I guess that is what I am doing here. After many long months I am breaking the seal of my blog. And why?

Oh so many reasons - not least of which is many of you have asked me to - or at least suggested you would like me to by commenting that you sometimes have a little look here to see if I have written anything new. The thing is of course I don't know that as there isn't a space to comment on a non-existent blog post. Another reason goes back to the original purpose of this blog - to update/inform/bore you all when there is news to impart. "Round robin" emails and text messages have their place but of course they can find their way in/onto your inbox/smartphone at times when you are otherwise occupied and their presence is not a welcome intrusion.

A blog post on the other hand can sit here and wait for such time as you have to come and find it and read and digest what I have to say. I like to think of you sitting there with a cuppa and a digestive, a hob nob maybe, or perhaps late at night with a glass of wine. And I hope that now you understand better why I am doing this you will feel moved to comment - thank you!

So here's the thing. I've not checked when I last posted which is deliberate. Playing catch up is fair to neither you nor me. You because it would be a tedious boring resume of days spent working, playing and in pain. Mostly in pain, and at work. Me because trying to recall all that has taken place would be equally boring and painful. Let's draw a line, summarise briefly and look to the future....

Well hopefully the future is brighter than it appears today. Pain levels of late have been stratospheric, the ongoing burning feeling across my whole back, a tight feeling around my ribcage and occasional (with most breaths) feelings of being stabbed. It hasn't been this way always of course - the injections before last gave some relief, and following the last set I did have a day of relief. But for perhaps three weeks things have been deteriorating so today I saw Mr Tucker, fully expecting to hear that perhaps I reacted badly to the last injections after that original day of comfortable numbness...

Instead of which I had quite a shock. Of the "rug pulled from under my feet" type, not to mention the "curve ball" or "knocked me sideways" variety.

Mr Tucker thinks maybe there is some pseudoathrosis. The last SpeCT scan evidenced this may be the case. If so and it causes the metalwork to fail this could be bad news. Alternatively my fusion may be just fine and dandy and perhaps as suggested above it is the metalwork causing me the pain and irritation.

How to tell? Well originally he suggested taking a look. Naively I initially thought this meant taking my top off - till he described opening up my scar and stripping back the muscle. Ouch. He talked of examining each level, and inserting genetically modified bone protein (at £3000 a pop!) if the fusion had failed. If the fusion is just fine he could loosen the metalwork and remove it - after all it is just scaffolding and once the house is built and standing firm there is no further need for it is there? And if I am one of the 30% or so reacting badly to titanium that might bring some relief.

For now he's suggesting a CT scan to try and pinpoint specific areas and reduce the area for revision surgery. I'm concerned about radiation levels but he compares them to transatlantic flights and I figure I'm for once in my life in the same league as David Beckham :-)

Meanwhile - I'll be seeing a new pain management specialist. Nigel - nice name. Hoping he has some nice drugs up his sleeve that don't cause constipation, hair loss, or embarrassing yawning during interviews and important meetings...

That's all for now folks. When I woke up this morning I never would have dreamed I'd be writing this tonight. Guess that's what makes life exciting and like a box of chocolates huh - which reminds me huge thanks to my daughter for bringing flowers and chocolates to the office tonight after a wobbly phone call.

Time to sleep, tomorrow is another day and I wonder what it will bring.

Sweet dreams one and all

Linda xxxxx

It was a year ago today....

Never really sure if you "celebrate" on "the day" or "the date". Either way we're pretty close I reckon. 4th Feb - which last year was the Thursday - I had five hours of surgery where two titanium rods and fourteen two and a half inch screws were inserted into my spine. Just in case I hadn't mentioned it...

http://www.youtube.com/watch?v=WBIf4AQj5s0

The plan was to go out for a drink or three after work on Friday - maybe even on for a bit of dancing. It's not going to happen now - with more injections on Monday I'm not really in the mood for celebrating. Let's wait and see if the pain eases first - though I may still have a glass or two of red :-)

Thinking positively and gratefully - I am still two inches taller. I can breathe more easily. And this evening I had a lovely warm bath and a massage which temporarily eased things. I've also got a new job that looks like it will be challenging, interesting and satisfying, and have booked a weeks holiday - which apart from Christmas will be the first proper time off since I returned to work.

So - a year on from the day when I spent 5 hours in theatre I'll be spending almost the same amount of time on trains to Birmingham and back! A busy day meeting with my new team, then a drink with a very old friend (but don't tell him I said that!)

More at the weekend - after seeing Richard Sheridan who is a. not a playwright and b. not seeing me about a pregnancy (I am flattered that some of you thought that was still a possibility!!!)

Linda xxx

Trigger Spot Injections

Forgive me if I am showing my age here but when I hear the word Trigger I think of a character in Only Fools and Horses... or maybe a horse belonging to Roy Rogers. If you google it the first thing you find is of course the mechanism that actuates the firing of firearms - of course.

But here we are looking at another meaning of the word. Trigger as in Spots. I've googled a fair bit, read some quite alarming articles, realised there are differing opinions but at the end of the day when you have a condition this serious you have to put your faith and trust in the surgeon treating you. If you cannot do that then I think you are with the wrong surgeon.

In my case I saw Mr Tucker again on Monday for the results of my SPEC-CT scan. We looked at the pictures together, along with Rachel who in the absence of Ian (at work) opted to get out of the comfort of her bed at some unearthly hour and come with me...

The picture was quite pretty to be honest. Lots of pink - a sign of cellular activity. But also a fair amount of orange - signs of inflammation. Apparently there is still some natural healing to take place - which is massively encouraging. But meanwhile, as the pain is so horrid and hard to cope with, Mr Tucker is going to try some Trigger Spot injections.

I meant what I said before - you have to trust your surgeon. If I ever came away from a consultation doubting my doctor knew what he was talking about, or didn't have my very best interests at heart I would look for another. This really is life in your hands stuff - not just the very real risks involved in the surgery but also the quality of life in the post operative period and into the future.

Stewart Tucker has a reputation as one of the very best - if not the very best - scoliosis specialist in the UK (if not Europe or the world...). I trust his knowledge, his opinion, and the way in which he takes what I say seriously and genuinely seems to want to help. But if these injections don't ease things I'm really going to struggle.

Let's not go there though. Thinking positively - they are going to help and I am having them done in the luxury of the Wellington Hotel - sorry, Hospital! I was offered a local anaesthetic in the CT scanner but opted instead for sedation and a bed for the evening (anyone blame me for that? They'll probably even throw in an omelette!)

I got the good news today that from Thursday I am again entitled to sick leave so may even have a day off to recover.Or maybe not as I have started my new job and think I am going to love it... more of that later.

Thanks again for your support - please do comment or message me as it makes all the difference.

Linda xxxx

Never rains but....

... it pours....

My mum used to say that, and it kind of sums up where we're at this week.

On Monday I am going to see Mr Tucker for the results of the SpecCT scan. My GP seemed to be concerned that the radiographer let slip something about being aware of my pain - I guess it isn't ideal to have been left wondering for a week what it is that they can see...

Next Saturday I have an appointment with a different consultant - Richard Sheridan. If you are curious google him and you will see what he specialises in ;-)

Sometimes it all feels a bit much to cope with. Other times I see what some people have to cope with and I am amazed - how do they do it and stay sane? I guess the saying what doesn't break you make you stronger is true - it has certainly been my experience over the past year or so.

Will keep you posted

xxxx

If you are reading this ... read the post before first!

Where were we this time? Ah yes - the SpeCt scan. (Just to say - I have no idea how you spell that 0nly that it is a very state of the art hybrid scan also called a radioisotype bone scan. It seems to combine two types of scan which are then superimposed - more of that in a bit....)

So - thanks to the wonders of private medical insurance - and I truly thank God that we have this through Ian's work policy - I had the scan today. I'm so sorry that so many people have to wait weeks/months on the NHS, I feel awkward when I am asked what time is convenient for me, but my giving it up wouldn't help anyone. In fact my being seen privately frees up space for someone else on the NHS. And when people say how it isn't fair that some people can pay and jump the queue I gulp but then I say to myself how hard I work to earn my money, and how I don't smoke, and how we can all choose how we spend our money, and, and, and - it simply isn't fair is it? Everyone in pain like me should be seen quickly in clean, comfy surroundings with water coolers and free coffee and staff who aren't stressed but enjoy their work.

Sorry for the momentary tangential diversion there - but here we are. I'm in the Nuclear Science Centre at the Wellington Hospital, St John's Wood. I have walked past this place many times and thought to myself "poor souls in there ...." but at 11am today it was my turn to be injected with a radioactive isotype that would in three hours be metabolised by my bones and detected by the Spec scan.

I suspect in nhs hospitals you may be asked to wait in the waiting room. At the Wellington they have this wonderful way of suggesting you may like to go somewhere for a drink. In this case for several drinks - of tapwater! As apparently it is important to flush the radioactive substance through the system. Nice.

We started with coffee and chocolate cake at Carluccios. Moved on via some upmarket charity shops to the Duke of York where the landlord/manager seemed to possess psychic powers. Either that or he regularly welcomes patients from the Wellington needing to drink copious amounts of liquid before a scan of some description. At the risk of getting him sacked for poor taste/politically inappropriate comments he made Ian and myself laugh by suggesting we could cut the electricity bills by plugging me into the mains ;-)

Fuelled by a (very) large glass of merlot, a plate of potato wedges and mayonnaise, some home baked bread and another pint of water I returned to the Nuclear Science Centre. Changed into some rather sexy scrubs that I thought beat a hospital gown and into the scanner room.

The first scan was fine - full body scan, comfy pillow, arms by my side, Take That in my ears. Piece of **** I thought... as I was invited to go to the loo before the more detailed spinal scan.

And then the fun started. Apparently I needed to have my hands above my head. This is problematic - even on a good day, laid out on the beach in the sunshine for a moment or two. For half an hour, on a cold-ish hard surface with a scanner close to my face then rotating around my body - it was well nigh impossible. In fact it was impossible. After a few minutes I was very uncomfortable. Especially when after ten minutes we had to start over. This made it fifteen minutes and I was now in a lot of discomfort - no - make that pain. Another twenty minutes and it was excruciating. I could actually hear myself moaning and thought I might scream. I struggled SO hard to stay still. Deep breathing, focussing on the ceiling, eyes open, eyes closed, acupressure points, aaaaaaaaargh..... I moved. I felt myself move and was surprised no one came to say anything - perhaps it wasn't detectable?

But hey - we got to the end of the scan and they said that the CT part of the scan was about to start - I was about to move into the tunnel bit. Claustrophobic as I am this is the bit I am dreading and then ... it all stops....

And the lovely guy in sexy scrubs comes and says to me "I'm really sorry Miss Anderson (Miss?! how did that happen?!) but I have some bad news. You've guessed it - they have to do it again. Not the teensy little bit where the agonising pain made me shift my arms just a weeny bit, no. The whole flippin' thing. No!!!

I start trying to explain why I moved - how awful the pain was, how I could not keep still, thought I was going to scream. I start to cry and he stops me. He tells me that he knows. What?! Yes, apparently they can see on the scan how much pain I am in. How? Why? He cannot tell me - but insists they would not carry on if there was no point - but this scan will be really useful to Mr Tucker.

So he sends me out to go to the loo - the water I drank earlier is doing what it's meant to do - to drink more water - and to wriggle my arms a bit. A fifteen minute break and he suggests I call the office to say I won't be in today. I do as I am told and go back in to the great news they will repeat the scan with my arms by my side. Clearly they are serious about this as they then strap me to the scanner at three points so that I can't move even if I want to.

Half an hour of discomfort - not pain as such - and a U2 album - it is over. No disrespect to Take That but maybe this wasn't their time. I zoned out to Bono and almost went to sleep.

Took a while for the radiographers and consultant radiographer to look over the scans and tell me I could get dressed but when they did you won't be surprised to know I was ecstatic. I left the hospital at 5pm. Six hours since I arrived. And next Monday - the results - meanwhile here I am in the (now looking not-so-sexy scrubs...)