Another quick one....

... it is late and I'm three glasses of red wine down with a peppermint tea brewing.

Today has been tough. Very tough, uber-tough even. And it is hard to know where to begin, so maybe let's start around 9am....

I had a CT scan at the Wellington Hospital. Minor panic when they couldn't find my records, massive panic when I got changed and went into the scanner room. Did I ever mention I was claustrophobic? Probably...

I survived the scan, notwithstanding the tears flooding down my face. And then to a consultation with Mr Tucker who is increasingly lovely - today we laughed about him cycling to Paris this week for Action Medical Research - and I offered to find him more sponsorship....

Long story short and all that - he thinks there may be some intercostal nerve damage. If this is being caused by a screw then removal of the metalwork on the right hand side of my spine may be the answer. Opening up my scar in this way will also allow him to check the fusion is solid - the CT scan did suggest it is healing well - and that, along with leaving the other rod in place, is reassurance that my spine won't start to curve again.

So more surgery - but not until the autumn. I have work commitments including the Greenbelt Festival that I want to fulfil.

I thought long and hard about blogging the many other issues that arose today but decided against it. This isn't an easy journey and many of us on this road will have experienced ups and downs, good days and horrendous ones. Sometimes it is best to draw a line, look forward and move on with faith, hope and optimism.

Instead I will draw my own line in the sand here and fall into bed full of chocolate and red wine ... :-)

xxxx

Quick post...

... before watching The Apprentice.

Yesterday I read and commented upon a friend's blog. I enjoyed it very much, as I also enjoy a number of other blogs. Not necessarily from celebrities or on a particular subject, simply for the way in which they chronicle the minutiae of daily life.

This blog has become preoccupied with scoliosis, surgery, pain, drugs, scans and now the possibility of more surgery. I still haven't read it but others have done so - one person told me just last week that they had read it in its entirety and I was surprised. So much so I let on there are "hidden chapters" that they definitely hadn't read - but I am not sure I am ready to publish them more widely as yet.

This blog - the url and design etc - was in place before my operation as I've always wanted to write and a blog felt like a place to start. The ambition to write a book refuses to go away but maybe it's here that I cut my writing teeth, and more importantly learn to write for others and not just myself.

I've written lots of books - none of them quite finished and most of them lost on flash drives or defunct laptops, or protected by passwords I instantly forgot. No one has seen them except me. I did in fact happen across one recently which somewhat quaintly was written on paper. It was a shock to find it, to remember writing it, and to recognise what was going on in life at that time. It's for that last reason that I don't want to share it and herein lies the rub.

I still find it impossible to believe anyone - with the possible exception of J K Rowling - can write a book that does not in some way reflect their personal experience. No matter how much you change or try to disguise names, characters, places and time, surely you write most powerfully of that which you know. Why else would authors spend months or years researching and living with communities they plan to write about (again - JK has to be an exception as I've yet to meet a death eater and doubt she has either...)

Perhaps there is a certain self protection then in keeping to one subject here - and in many ways too this blog isn't open to the sort of comment you find elsewhere. I'm not sharing my thoughts on politics, the news or current affairs so no one is jumping up to disagree. But at the same time it doesn't give the full picture of what else has been going on over the past year or so...

I've been embarking on a project to collate some of the correspondence from last year, with a view to including it in the book I one day will write about this experience. Re-reading some of the emails they pick up on the everyday and world news - good to get a sense of context and realise life truly does go on.

Today we went to see the final Harry Potter film. I found myself reflecting on how in spite of my recent angst about growing older it really is rather nice to be free of the multi-faceted angst of our younger years. Perhaps to be explored in another post but for now my money's on Helen...

The one mostly about drugs....

So the pain management specialist suggested Fentanyl. He wrote a script that would cost £300 to fill and I asked my GP - very nicely - to write me an NHS script instead.

As per NHS usual I couldn't actually see her to discuss this so I wrote her a letter explaining what had gone on. Being the lovely GP she is I got a call saying she wanted to see me. All good except it set the process back a week...

She doesn't feel Fentanyl is appropriate. Having looked at the side effects I am inclined to agree. Sure the pain at times can be hideous but would I seriously trade it for nausea, dizziness, constipation, depression and no chance of a glass of red at the end of a long day...?

Instead she has prescribed some slow release 100mg Voltarol medication that bypasses the potential gastric issues. Apparently this is not a regular/usual method of delivery (unless you are in France) and I have not found a chemist that stocks it.

I'll get my local chemist to order some in. No problem except it will then be two weeks since I saw the pain guy and a week since I was due a review appointment and I am still depending on red wine to ease the pain and get me to sleep!

Meanwhile the CT scan is on Monday after which I will know what is happening and if/what further surgery is required.

One day at a time....

Where to begin

Sometimes it feels like there is so much to write/say/share that I never get around to it. Posts buzz around in my brain but somehow don't make it onto the blog and of course they are then lost into the ether, no matter how much I think and strain my brain there is no way of recalling them.

Today I want to put on record the good times and the bad times. Not in a whingeing way, not in a blissfully ignorant living in denial sort of way. Just the bare basic facts.

There are days when it is all too much. Today was one, but I know that it was made worse by yesterday's trip to Alton and the memorial for our dear friend Simone's husband who died so tragically three months ago.

Setting that apart however, the pain was hideous. I tend to refer to it as "uncomfortable" but then there are times when I think to myself "for f***s sake, anyone else living with this pain would be screaming from the rooftops and taking all the drugs on offer! It is true that you become accustomed to the pain after scoliosis surgery, and apart from the comfortably numb day about six weeks ago it has been my constant companion.

I don't want to whinge, I just want you to understand.

I wake up in the morning and the first thing I notice is the pain. I reach for the paracetamol, maybe switch the heated cushion that is my night time companion back on, look to see if Ian is there and likely to be offering a cup of tea!

A shower can help, the painkillers kick in, and after a struggle with getting dressed (especially if it involves a pair of tights!), straightening my hair (raising my arms above my neck - just - hurts!) and the morning chores I set off for work.

Walking up the slight hill to the tube can feel like I am trying to conquer Everest. I make use of the breathing they teach you in antenatal classes! And the journey itself - well it all depends on a. getting a seat, and the type of train it is b. the person sat next to you and c. keeping occupied. So an ideal journey is sat on a new train with no one by my side and a paper/good book/music. A "less ideal" journey is standing on an old train being thrown around and unable to read. I often cry - the sort of tears you get when you stub a toe or hit your funny bone. Not self pity tears - just pain.

My surgeon recommended I see his colleague - a pain management specialist. Long-story-short - he didn't tell me anything I didn't know. He wrote me a script that would cost £300 to fill so I am waiting to see if my lovely GP will write me one up on the NHS. If not - no fancy fentanyl patches and lollipops for me!

Bottom line - if I have a pseudarthrosis he can do nothing for me - it is down to more surgery. More than a week off work, less than eight. I've had endless messages saying fingers crossed it isn't that then but what if it isn't....?

Pseudarthrosis - non fusion - would mean an op to insert genetically modified artificial bone. With the hope the pain would then go. No pseudarthrosis and where does that leave us...? Maybe intolerant to the titanium and surgery to remove. But I have grown attached to it - and it to me - it is a reassuring presence, keeping my spine safe and protected. I do not want it removed.

Perhaps long term pain management is the answer - get over the side effects and don't worry about withdrawals if they are a permanent fixture in my life?

Meanwhile.... there are good days too. I saw Take That - twice! I saw The Killers, Bon Jovi, Kaiser Chiefs. I met Schofe, saw The Cube recorded. Watched Bridesmaids and laughed! I have four amazing children, a lovely husband, a comfortable home. Look at East Africa - I have it made!

Glass is half full - has to be. But thanks for being there on days when it doesn't feel quite like that.

xxxxxxx

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