Saturday, 29 January 2011

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


Tuesday, 25 January 2011

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...)

Never saw this coming

So - where were we? For those of you joining us for the first time, or anyone who's been away a while, since my surgery almost a year ago I have been in pain.

At first it was unspeakably awful, seemingly unbearable and intractable pain. Relieved only by high doses of morphine and a cocktail of other drugs that led to me sleeping most of the day (though interestingly not the night...)

After the nightmare of opioid withdrawal the pain - the actual pain - gradually found its way into my consciousness. As if for months it had been beaten into submission by pills and potions, and now was its time to make its presence felt.

For a while its presence was bearable. Comforting even, to feel something, to emerge from the fog of painkillers and be reminded that yes, I had major surgery, yes, it was painful, but it would/will get better.

As the weeks wore on the pain felt less of a friend, it refused to go away, or even to give me some respite. A pain management specialist recommended amitryptiline and after a few weeks things seemed to improve. Less paracetamol, voltarol, ibuprofen. But also a lot less hair as it began to fall out, and much more of a waistline as I retained fluid and blew up like the proverbial balloon. Not to mention the itching, the dry mouth, and the sleepy drowsiness.

So I took myself off amitryp as I fondly call it, and waited to see what happened. Probably not my finest hour as the pain which again had been merely hiding away surfaced with yet more of a vengeance. To the extent that by new year I posted on here the honest truth - I wished I had never had this surgery.

Fast forward a few weeks and I got myself back on amitryp, stood in an inch of water in the shower as my hair blocked the plughole, struggled to do up buttons and zips, and to stay awake in meetings. This time however the pain refused to be beaten. Instead of retreating somewhere not to be found it lurked in the shadows, as if watching me to see how I was coping. A paracetamol here - victory to the pain! An ibuprofen or voltarol there - it's getting the upper hand! Half a bottle of red wine - it must be winning...

Yesterday I saw Mr Tucker for my almost-one-year check up. Perhaps if Ian had been with me I may not have been so honest. But stripped of my security blanket - the one who makes me stay brave and strong in the presence of this god-like man - I 'fessed up. In fact I recall actually laying my head on his shiny desk and telling him about New Year and how I wished I never had it done...

I expected a pep talk. Something along the sensible lines of "Look Mrs Anderson, we all know you're not getting any younger and at 52 you can hardly expect to have the same recovery time as an adolescent girl. Hang in there, keep taking the amitryptiline, come back in 6 months and we'll see how things are...."

Instead he looked at me and gave it to me straight "This length of time after surgery you should not be in this much pain. I've been holding off till now but it is time for a SpectCt scan"

To be continued.......

Sunday, 23 January 2011

One Year On...

Not strictly speaking a whole year - that has to wait for next week, 4th February. But tomorrow I go to see Mr Tucker for my annual check up.

Where has the year gone? Well for much of it I was asleep I guess. Or in pain. Or, more recently, in the shower...

Since September I have mostly been at work as in spite of being on a rehab programme I was pretty soon catapulted into full time activity - all of it energising, creative and exciting to be a part of but much of it exhausting too.

When I last saw Mr Tucker I was in a great deal of pain and he suggested steroid injections might help. They had very little effect but since New Year I've been taking amitryptiline again and after three weeks or so I think it is again starting to take effect. I don't enjoy the side effects - dry mouth, fluid retention, itching and yet again my hair falling out. But what is worse?

Apparently they also potentiate the other drugs I take - mostly paracetamol but sometimes ibuprofen - and I have noticed I am taking fewer and watching the clock less.

Perhaps this is as good as it gets. If so then I guess it's not so bad. Clich├ęd as it may sound there are plenty worse off than me. I need to stop looking at those who seem to have made a much quicker and better recovery and remind myself that we're all different and we all have different issues to cope with.

So that's it for now - though some of you may like to take a look at this if you have ever wondered exactly what Platform2 is - or was. I am proud to have been project manager of this amazing programme for the last three years - sit back and enjoy a taster of what we have achieved!

Linda xxx

Thursday, 20 January 2011

End of a chapter

Is this it?

Infamous words of Sir Bob Geldof as Live Aid came to an end. I found myself asking the same question this week as we finished the last Express residential for Platform2 volunteers.

Over the past three years we have sent almost 2000 young people overseas to volunteer in a developing country. They have returned fired up and ready to tell their story and share their experience.

I've lost count now of the number of times I have been held in a hug by a P2 volunteer as they tell me "you have changed my life". What an honour, what a privilege, what a job...

There have been enormous challenges. I'm not going to pretend it's been easy or that there haven't been times of absolute despair that we'd ever get to this point. But we did. Our evaluation was positive, our score was unprecedented, and tomorrow we plan to celebrate in style.

We'll showcase our work to Christian Aid in an exhibition and lunchtime event. Live performances, inspiring presentations, videos that I expect will make us laugh - and cry.

Then the team will glam up in black and white for the party to end all parties. Not a particularly glitzy venue and the budget is tight, but what's going to make it special is the amazing commitment of those who will be there.

I already saw that this week as I said thank you to my own existing team - all we did was drink hot chocolate and write a postcard to a colleague. But I don't think I am wrong in saying that there was a lot of love in that room and you really could feel it.

This is probably the first blog post that isn't primarily about my back. That feels like progress. It doesn't mean it is better - it is still bl&&dy painful if I am honest.

But it's about living in the present, about distraction, about taking each day, hour, minute at a time. Realising most of the time things are okay and when they are not there is help in the shape of pills, hot baths, water bottles, massage, and of course red wine ;-)

Looking forward to tomorrow so time to sleep. Please do comment - feels a bit lonely here even though I know many of you are reading :-) xxx

Saturday, 15 January 2011

The need to blog....


Feeling the need to blog. Not sure what to title this entry. Feeling the need to write stuff and not sure where to start!

Last week was manic. From Monday to Wednesday I was at Express - the residential for the wonderful Platform2 volunteers who have just returned from their overseas trips.

Express always feels like hard work - it's a bit of a schlep to Irthlingborough and the staff enjoy long days, sleepless nights (the beds are a bit lumpy) and a diet of carb-heavy fillers. If we can put that aside however we see glimpses of creativity that make us grateful to have been a part of this amazing programme.

The final session last week included creative writing to make you cry, drama to make you gasp, artwork to inspire you and a song that had us all on our feet singing and clapping. I'm in awe of these youngsters - not just the returnees but my staff team too - for their amazing commitment, enthusiasm and passion to be the change they want to see in the world.

Wednesday lunchtime saw me joining a couple of staff and our amazing gap year volunteers journeying from Express to the staff conference. Minibus, train, another train, coach... public transport can be tiring and tiresome especially with a fused spine and heavy luggage (even if I had posted all my dirty washing home!)

Was it worth the effort? Most definitely - but difficult to describe the experience of realising you are in a special place, at an inspiring conference that you and others will get a great deal out of, whilst at the same time not "enjoying" it.

Sure there were special moments - and facilitating a small "homegroup" was a privilege that enabled many of them. In view of our success I am considering applying for the Apprentice next year ;-)

But there were a lot of tears too. Colleagues, friends, staff at the conference centre all commenting that I looked unwell. Stupidly thinking that since I could not join in the barn dancing the next best thing would be to watch. And dissolving into another soggy mess.

But the tears were noticed, by friends and colleagues who made sure I had a space to cry where I would be well supported. By those who bought me gin and tonic or red wine and made me laugh again. If you were one of those angels thank you.

Thank you to Brian Draper for leading us in a wonderful life changing session on Thursday morning. And for noticing I was crying and wanting to help. Thank you too for your book which I believe is a life changing read.

It has never felt so good to be home. To realise that Corrie can be renewing. As can the sofa and a glass of red. To sink into a hot bath. To make and eat a Caesar salad. And to revel in the softness and comfort of my memory foam mattress!

More of the same next week as we return to Irthlingborough for the final Express. Will be so sad and sorry to say goodbye to my fantastic team. But looking forward to a massive celebration with staff past and present next Friday as we party into the night!

More soon


Sunday, 2 January 2011

Hopefully Happy New Year

2011. A New Year, New Decade even. New start, new opportunities, hopefully a new job. None of us know what's around the corner but I sure am pleased it is this time this year and not this time last year. I think.

Why only think?

Last year I was facing spinal surgery. At this time last year I wasn't sure I would have it as the surgeon I had been seeing was reluctant to operate on such a stiff curve in such a "mature" patient. Fast forward 12 months and I've been in theatre five hours, in hospital two weeks, in bed best part of four months and off work for seven.

So of course I must be pleased it's now and not then? Why not be?

The thing is - and it's hard to say this for fear of coming across as negative or ungrateful - I am not sure that given the choice again, knowing what I do now, I would go ahead. Yes, I know that my scoliosis was getting worse, I know it was starting to squash my lungs, would have squashed my other vital organs, probably would have meant a wheelchair and probably a reduced life expectancy.

But had I not opted for surgery I might have had a few more years of what I can only describe as freedom. Not from pain - that was there in bucketfuls even before the operation. But it was a pain that I recognised, that I knew, that I had grown up with and could cope with. It didn't stop me living my life. I worked hard, played hard, dressed to disguise the "deformity" and for the most part forgot about it - even if it sometimes took a glass or three of red wine to get to that stage!

Now "my back" dominates my every waking moment. (And much of the time when I would prefer to be asleep.)) It's not easy to get comfy or to sleep, on waking I reach for painkillers, getting dressed is a mission, and throughout the day, every single moment of it, I am conscious of a sore, aching, dragging, pulling, itching pain.

At some point during my "recovery" period I had what I guess used to be called a "nervous breakdown". Nowadays it's generally referred to as post traumatic stress disorder. I don't want to go into the details here - it's a new year and I'd rather be looking onwards and upwards.

However, the impact and repercussions of this "episode" have been profound and long lasting. Sure I had counselling and some low dose ADs, but there remains a lingering feeling of disengagement which feels impossible to put into words.

Crowds - be it the nightmare of the Jubilee Line in the rush hour, or a rather more pleasant social situation - are especially difficult to cope with. Always there is this feeling of detachment, of being "apart", a sense that no one "gets" what you have been through.

And no matter how much you tell yourself that others have been through far worse, or that it really doesn't matter whether others understand or not, that the thing to do is pull yourself together and get on with life, still the tears come - at the drop of the proverbial hat or more likely a thoughtless phrase. Thoughtless in the sense that no thought has been given to how you may be affected, not in a cruel or unkind sense.

And so at the start of this new year, new decade, I am seriously unable to say that I am pleased to have had this surgery. I hope one day I may be. For now I am taking a day at a time. I have put myself back onto a course of amitryptiline which can help the pain, enable sleep, and lift your mood. Let's see how that goes.

I thank you all for your support over the past year and wish you every happiness and blessing for 2011. More soon...