Tuesday, 19 July 2011

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 ... :-)


Sunday, 17 July 2011

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....

Sunday, 10 July 2011

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.