Sunday

Sunday morning. Murray vs Federer. I was wondering if they were as nervous as me. Guess by the time people arrive here for tea later the match will all be over. Wish my little adventure would be over that quickly.

I've not blogged for a bit - the words and posts have been in my head but getting it all out has seemed like too much of an effort. Not only that - I can see the number of "followers" growing (thank you) and I have got so many lovely emails and texts and calls and visits that I know you are all reading, so I feel something of a need to edit the words in my head before they reach my fingers and the keyboard.

Dave is poorly - he has a bad throat, and I can feel myself starting to come down with it. This could be disastrous in terms of the surgery date so please all those of you that pray and send positive thoughts what I need is for the First Defence to work and to fight this off.

We're expecting friends for tea today and I cannot wait to see everyone. But I am not sure how I will cope with all the emotion. I cry - a lot - at the moment. Everything upsets me. I physically shake, my heart pounds, I break out in cold sweats (think I mentioned those before) and I absolutely panic and think I cannot go through with it all. And then I cough and can't breathe or forget to take ibuprofen and the pain kicks in and I think there is no way I cannot go through with it.

Still so much to do - lots at work to finish up and handover, lists to write for the family back home. Phone numbers, emails, who to call, how to update the blog. Busy busy busy. Orthodontist tomorrow to see if a fixed retainer is possible to stop my teeth moving back (interesting fact by the way - many of those I know with scoliosis also have small mouths and crowded teeth that insist on crossing over...).

Probably better to be busy than sit around and dwell on things too much.

Nerves

I actually think I might be sick. I am in the First Class lounge at Paddington Station waiting for a train to Bristol where I have a meeting. Then onto Cardiff to see a dear friend.

But I have had to stop working for a bit as I am shaking so much and my palms are clammy and I do actually think I might be sick.

I was emailing someone in the early hours when I couldn't sleep and said that I would love to find a blog somewhere written by another woman of more mature years about to undergo this surgery. To feel less alone, to know that the fear is natural, to help myself understand what it is I am afraid of, and then to see them come out the other side, recover, return to life and work and normality.

So my blog now has a bit more of a mission and a purpose - if I manage to keep it up then my hope is that at some point in the future it will bring some help and comfort to someone else on this journey - if that is you reading this now then all the best and I'm guessing it is okay to be afraid ...

Message from Dave

While mums in hospital, I'll be updating her blog so you can find out what's up.

Is this a good idea?

Two blog posts in one day. Hmmm... hence the title of this post.

Word is definitely getting round about my "little operation" which is definitely what I wanted. As someone blessed with so many amazing friends; people who have come into my life over the past 50 years and touched it for a reason or a season or forever, I didn't want to disappear for three months or so and for you all to think that I didn't care enough about you to be in touch.

So many of you lovely people have emailed me. Texted me. Dropped by my desk to speak to me. Phoned me. Or even commented here. I am overwhelmed but of course this does make it rather "real". If I were to back out now - which I am oh so sorely tempted to do - then I would probably have to explain to about 300 people why I was being a bit of a "Woos" (sp?) and notgoing ahead with surgery which could massively improve my quality of life....

But the thing is this - so many of you lovely people are calling me brave. Brave for having this surgery, brave for blogging about it... but I don't feel brave at all. I am terrified. S***ting myself in fact (does blogger delete this post for bad language?)

Others have said that maybe this blog is helping me - in a therapeutic way. Well yes - I think it is actually but does that make it a good idea? In the midst of all of this I am assaulted by images of suffering, death, starvation, throughout the world. How selfish am I to take all these resources for just one person? The reality of course is were I to call up AXA/PPP they would not divert the cost of my costoplasty and fusion to the DEC appeal for Haiti...

So no conclusions tonight - just thanks for the messages, more pleas for comments, and whatever prayers you can muster for this time next week x

Reasons to be cheerful

Morning...

I've had a lot of encouragement to think positively, and that is definitely something I aim to do. Don't think about the surgery - think about the recovery, being two inches taller, in less pain, able to breathe more easily (for those of you of a certain age does that phrase remind you of Tunes...?)

The last few days there have been some very positive things indeed to think about and I figured it may be fun to share them so here goes...

Now that the news is "out there" about my forthcoming surgery everyone is being nice to me! The lovely girls in the office took me out to a Thai restaurant and paid for my lunch - thank you ladies! People want to buy me a drink and I may as well make the most of it as the next few months will be a bit of a detox (well - unless you count the drugs...)

My lovely hairdresser (have to give a name check here to Martin at Arena in Lower Marsh - 10% discount to all CA employees...) has cut my hair in a way that will be extremely suitable for a long hospital stay (ie: short) and sent me on my way with lots of freebie conditioners.

The five star hotel where I was recently woken at 4am by a fire alarm has offered Ian and myself a discounted stay when I am recovered, and House of Fraser - where I was due to have a personal shopping experience on the day I go into hospital have held it over till September when I'm going to get my first ever fitted dress - woo hoo!

I met my daughter last night next door to Molton Browne in Regent Street and instead of thinking "wish I could afford to treat myself" thought - "ah - they will be my toiletries of choice for the next two weeks at least..."

Last night I met up with a great guy who has already had this type of surgery. He was brutally honest about what lies ahead but also living proof that you can get through it. And yes - he did show me the scar and it is very neat ;-)

There lots more positive things to consider too - all the lovely messages, texts, emails, cards. Friends I'd lost touch with making contact.

Two of my friends are pregnant (you know who you are - hopefully!) and by the time their beautiful babies are born I will be back at work and this week so full of fear and trepidation will be a dim and distant memory.

And even as I write this Ian is bringing me my second cup of tea in bed this morning. (toast anyone?!)

Reasons to be cheerful indeed.

Comments!

Hi there - it's great that so many of you have been reading and getting back to me - I feel much less alone on this journey already!

I know however (as several of you have told me!) that it can be problematic working out how to comment. So here's how it works...

You will need a google account in order to comment. It is very easy to set one up at https://www.google.com/accounts/NewAccount

Once you have done that you are all set to comment on any blog - not just mine! After reading the blog post you just click where it says comments - even if it says 0 comments - and it opens up a box where you write. You then choose google account as your profile and click post comment.

Go on - have a go here!

Linda x

And now for something completely different...

Well now here's the thing - I have got tendonitis!

My foot had been hurting for a few days - last night I couldn't sleep for the pain in my back and my foot (not to mention my head and my heart at the thought of what lies ahead...)

So this morning I figured I would head to A and E to get it checked. Only the glorious Met line was delayed - what's new - and I headed into a round of meetings, calls and emails which left no time for hospital.

Until I found myself in a meeting this afternoon with my boots off, my foot propped on a chair, rubbing it, distracted and wanting to scream with the pain. I headed to St Thomas's Hospital where somewhat worryingly I was immediately seen in the Urgent Case Clinic.

The lovely nurse Maureen - what a fantastic example of the NHS at its best - immediately diagnosed the problem and sympathised with the intense pain. Since coming home I have googled and it does seem that tendonitis is renowned for it's pain - which is a huge relief as I was seriously concerned that my pain threshold was a wee bit too low to cope with what next week holds....

Sooooooh - here I am with my foot bandaged, elevated - and soon to be iced. Since I consume more ibuprofen per day than the average person does in a month they are having little effect! At least I know that the enforced bed rest and morphine will ensure this pain at least is gone by next Thursday!

Gruesome bit

Hello again,

You have been warned in the title but if you have found yourself here by mistake there is still time to click back before reading on ...

Some of you are interested in what exactly I am going to have done to my back. You can in fact google and find videos of the procedure being performed on youtube (presumably edited...) but here is a brief summary.

I've got a scoliosis - spinal curvature - of 66 degrees, worsening at a rate of about a degree a year. It's painful, debilitating and affecting my breathing as my lungs are getting squashed. Left untreated the prognosis is not great...

Mr Stewart Tucker - one of the top spinal surgeons in the UK - has recommended surgery. An anterior release by right thoracotomy and a posterior instrumental fusion. This means an incision in my side to remove and shorten some ribs and rotate my spine, followed by a long incision down my back to expose the spine. Bits of my ribs will be used to fuse the vertebrae from T2 to L3 and titanium rods and screws will then be used as scaffolding to hold this work of art in place. Six hours in theatre and three days in the HDU then a further two weeks or so in hospital.

The fusion takes six months so I will have to wear a brace for that period of time. The rods and screws could theoretically be removed but most people keep them in unless they are causing trouble.

Apparently it is very painful, I will be pretty dependent on others for six weeks, and off work for 12. The pain should be controllable in hospital (bring on the morphine!) but I'm less sure about when I get home!

That's about it as far as the gruesome bit goes. I am pretty scared but guess it's an awfully big adventure. I'll try to post some pics for you all to see!

xxx

Spiritual Stuff

Today has been a good one. I am getting organised - sort of. Ian has been cleaning the house. I can look back over the weekend and know that I have seen and spoken to some of the best friends and most important people in my life. I've eaten some great food, drunk some lovely wine and laughed a lot!

But there's been something else. Something so hard to express. Notice my short sentences - the words won't come easily. When it happened/was happening I knew all too well that it was the most fleeting moment, impossible to grasp. Like the brush of a butterfly's wing - not that I have ever felt that. It was here and then gone and I so want to recall it and remember it, capture it and keep it safe.

The lady behind me in church had a pen and I wanted to borrow it and scribble on the pew sheet but what would I say? Let's have a go...

I wanted to go to church this morning. I wanted to take communion. I asked a friend to come with me and thank her so much for doing so - can't have been easy. I fidgeted a lot - church pews and scoliosis have never been a comfortable combination. I tried to focus on the liturgy whilst thoughts of surgery continued to assault my mind. I was grateful for the oh so familiar words and tunes which somehow resonated deep within beyond my conscious thinking.

I can recall exactly the moment - but I am not sure what it meant. Robert - the vicar - broke the bread and recited the familiar words that Christ's body was broken for us. And suddenly there was something. A clarity, an opportunity, a sense of new beginnings, fresh starts, things forgiven, moving on - all that new birth stuff the bible and church talk about maybe?

And then taking the bread and wine and thinking about a young man many years ago facing a gruesome death by crucifixion. Stuff I grew up with, have lived with, struggled with, for so many years.

And then the choir singing an anthem - my peace I leave you, my peace I give you, Be not afraid. Felt the tears pricking but it was okay - no dramatics, no hysterics, just that sense of peace.

So there we are - interested to hear comments from friends of all faiths and none as this blog hasn't been easy to write. The cynic in me could say that anyone facing major surgery would turn to religion and cover all bases. But as someone who "did church" for oh so many years with so much doubt and uncertainty it was kind of nice to feel something - even if I don't know what it was....

Busy busy

I may already have said this but it is worth repeating - thank you so much for all your messages. And thank you to all those of you who are reading this and willing to be a part of this journey.

Well everything is booked and confirmed and here is where the need for a strong stomach starts, so turn away now if you are of a fragile disposition...

On 3rd Feb I take up residence at my luxury accommodation in St John's Wood (aka the Wellington Hospital) where I am pleased to hear the toiletries are Molton Browne... On 4th Feb I'm getting an anterior release by right thoracotomy as well as a posterior instrumented fusion - aren't I the lucky lady?

There is a stupid amount to do. Work stuff obviously - online now frantically responding to emails! Social stuff - want to see all my friends and say a proper farewell. Emotional stuff - need to be in a good place to receive all the positive energy being projected my way. Spiritual stuff too - is it an awareness of karma, a Catholic sense of the need to be in a state of grace, or just a desire to be at peace with everyone as that may be a lot less hassle to deal with in the coming weeks? Not to mention the practical stuff too - but don't let those crazy "How Clean is Your House?" ladies near me this week as I decided life really was too short to clean this weekend and then again next :-)

So we have the work stuff, the social stuff, the emotional stuff, the spiritual stuff and the practical stuff. But what about the Thinking stuff? How do you deal with that? Every moment of every day it is there - constantly assaulting you, taking you unawares when perhaps you least expected it. So for a bit you think about something else - what to feed the current hoard of teenagers upstairs for supper, how to make sure everyone I know and love gets a birthday card this year (given up on that one - sorry), whether watching Casualty this evening is going to be a sensible viewing choice...

And then - Wham - it hits you again. In your face, the gut wrenching (oh yeah - I get what that means now), stomach curdling fear. Not that there is anything to fear of course - my surgeon is at the top of his game (try telling that to AXA/PPP) and this procedure is to him what baking a Victoria Sandwich must be to Delia. Spinal cord monitoring means the risk of paralysis is now just 0.7% - if you were gunning for a lottery win with those odds would you even think you stood a chance?

But the fear is perhaps the fear of the unknown? Personally I have never spent 72 hours in a High Dependency Unit. A chest drain sounds less than pleasant, a catheter frankly quite disgusting (sorry for too much info guys). A ventilator is surely for those who have had very serious and major surgery - oh heck, hang on - that's me! And horror of horrors, fear of fears - apparently I will not be in a position to wear my M and S nighties! Hospital gowns and no lipstick - is it any wonder I am suggesting people may want to wait and visit me when I am back at home and have sorted my hair out?

So - how do you cope? I only ask that as so many of you lovely people have said that to me - it is good to know that you cannot imagine how I am feeling as neither can I! Well - I try to focus on the bigger picture. There's a heck of a lot of suffering in the world at the moment. Haiti - so many people with crushed limbs requiring surgery - amputation even - with minimal facilities. Afghanistan - where one friend recently lost someone dear to him and where another has a brother working 24/7 as a surgeon. My op may be massive and serious but I am going to be in a clean and safe environment with good anaesthesia and pain relief.

I also try to look beyond - to the summer - a nice holiday, a Bon Jovi gig (!) and being two inches taller! I am harnessing the prayers and positive thinking of so many friends and arranging to see many of you in the coming week. If I don't then I am sorry - but we will catch up after.

I really want you all to be in touch. I know that it will get me through this. Please - if you have read this - then DO comment. It takes a second - just say hello! Text and email me - Dave will log in and read things out to me. Technology is amazing - Skype me, webcam me (but do NOT expect to see my hospital gown so audio only this end!) and let me know that you are there. Molton Browne toiletries are no substitute for the love of a good friend.

I have rambled enough for one night. Thanks for reading and being there.

Linda xx

Woo hoo and welcome

What can I say? Tim, Beth - so lovely to see you here and thank you for your comments!

Thank you also to others who have taken the time to read my emails, click through to this blog, speak to me, reply, post or pray...

Today was weird. I got up, dressed, did all the usual stuff and headed off to a consortium managers' meeting in Farringdon. Somewhere along the Euston Road things started to hit me- what am I doing? I have major spinal surgery in two weeks, surely this is something to be processed and prepared for? But no here I am - business as usual.

Lunchtime was a tipping point - tears in a teacup but it hurt and thought I would have to concede the day. Big thanks to my dear colleague who helped me recover my composure on the Victoria line and a good meeting at DFID. Then drinks with my management colleagues before headng south to Streatham for a comedy night at the new and rather wonderful Hideaway Club - will blog about it later.

Nightmare journey home made more pleasant by chatting to Rachel oh so far away. Now in bed and wondering if getting up in the morning is even the vaguest possibility?? SO much to do, so much to think, so much to say - as I so often do say - laters..... x

4th February

Hello - and where are you all?! I've had messages and texts to say you have read the blog but no comments - I feel quite lonely ;-( Please do say something - if it is only hello!

So here's the thing - Mr Tucker was absolutely honest about what I have to expect and "look forward" to if I do not have surgery. He was also the first doctor to agree with me that I do not have asthma but reduced lung capacity/function...

He recommends surgery. He will be delighted to do it. He may reduce the severity of the pain. And my back will look "fantastic". It will be massive surgery. It will be incredibly painful. Six weeks doing nothing BUT he hopes to get me back to work in 12 weeks.

And - he's free on 4th Feb so provisionally booked. After the consult I went to M and S and bought three nighties - aren't I well prepared??

I then went to the office to tell my boss, my friends, HR. I then went to the pub and drank two glasses of wine....

Yikes!

I am completely overwhelmed! I sent out this little email to trusted friends and colleagues - and it seems as though every one of you has replied with the loveliest words and thoughts and prayers - thank you!

Well - tomorrow is the big day. Very big day. Probably actually the biggest day I will ever have to face. Is it an exaggeration to say that my life is in Mr Tucker's hands? Certainly my quality of life must be...

He could say that he would like to operate, correct my scoliosis, improve the pain, make me two to three inches taller and improve my appearance - woo hoo!

He could say that it is just too risky and I need to adapt and cope with things as they are and as they will be. Either way it is bl**dy scary!

So - those of you who have a faith - thank you for your prayers. Those of you sending postive energy and vibes -hugely valued. Those of you into practical action - I can smell your cake already!

Please do keep in touch - email me, comment on the blog, text, tweet, call or visit - if you were invited to share this blog and this journey it was for a reason.

Night night

Linda xx

Another seminal moment

Well ....

and Welcome ...

Welcome if this is your first visit to my blog. Welcome to my humble abode as they say (who exactly does say that these days...?!)

Welcome back if you have been here before - though to my knowledge only one person ever knew this blog existed! Rather than start a new blog for this "shall I/shan't I?" scoliosis surgery journey I thought it may be best to just revisit this one which I set up a good while back. After all isn't the URL rather cool...?

It feels incredibly different now - knowing that perhaps there are people reading this! Eeeeek! If you dare to delve into the archive who knows what you may find - nothing of any significance I am sure but it still feels like I am exposing myself to the world - no the universe - so please be kind to me if you choose to comment - and I hope that you do.

So - today's blog is basically this: I have told a number of very dear friends about the situation I find myself in. I am overwhelmed with the messages I have received - the sensitivity and the prayers and positive vibes coming my way. Thank you all.

If on Wednesday the consultant says that surgery is not an option as it is too risky and/or dangerous then who knows where we go from here? The good thing to know is that I don't have to face all this alone.

Please forgive me that this blog is rather self centred and with such destruction in Haiti on our TV screens and computers all the time I would totally understand if you thought it actually rather selfish. I do myself.

But I really value your prayers and friendship so if you can bear to journey with me then I am very grateful - thank you.

By the way - I did try to post a pic of my spine - from the mri scan - so that you all know what we are dealing with! No success so for now I will just quote the last consultant "It is awful"

Laters x

I don't feel like dancing....

Well I do actually. Feel like dancing that is.

Last week we bid farewell to seven very dear colleagues from Christian Aid. Twenty one speeches, several cases of wine, a whole load of nibbles and some pretty spectacular cake. Oh - and dancing!

Since Thursday evening when I threw caution and decorum to the wind and threw myself around the dance floor to the sounds of Abba, Queen and the Killers I think it is fair to say I've been in agony. More wine helped - a bit. As did some painkillers - less than the wine I think - also hot baths, hot pads and hot wheat-filled things you pop in the microwave ;-)

But nothing takes the pain away completely. It is always there. Some days nagging, some days aching, some days burning. Some days clicking or cracking, feeling as if the spine is further rotating and nerves are being trapped as muscles are pulled.

Surgery may help. It may not. There are no guarantees - though being at least two inches taller is possibly the only thing we can be certain about. Hmm... shopping ;-)

I guess at the end of the day it's a gamble. Trading off the not inconsiderable risks of major spinal surgery against the pain today and the likelihood it is only going to get worse.

Seeing Mr Stewart Tucker on Wednesday. He's supposed to be good - god even - when it comes to scoliosis so I trust him and what he'll have to say. At the moment I'm thinking how devastating it will be if he says that surgery is too complicated or too dangerous - which kind of makes me think that perhaps I am thinking of surgery as my preferred option. Don't know.

But today at any rate - I actually don't feel like dancing x

So this is the thing.....

I'm writing this against the backdrop of Sky News. An earthquake has hit Haiti. Impossible to understand the shock and horror and inability to cope there....a very poor country without the infrastructure to survive....

And I have to decide whether or not to have surgery which may help me - one small person on this planet - to live a life with less pain and more movement...

How on earth do you make these decisions? What factors do you take into account? On a personal level it is impossible to know the prognosis either if I do or if if I don't have surgery... On a very personal level it is impossible to know how you would cope with the pain. Or the possibility that things don't go according to plan....

But as a mum how do you weigh up the impact on your family if you go ahead and they have to cope with what can only be described as cr*p for a few months? As opposed to the possibility of - what - if it is left untreated?

As a wife how do you make everything work? In sickness and in health - easily said but the reality - catheters/morphine/blood transfusions/stitches/scars/braces/pain - did we sign up for this?

As a manager - a delightful team of hard working colleagues. Who need direction and support. How do you walk away? Even if just for a few weeks/months...?

Decisions, decisions. For now time to sleep....

The Elephant in the Room

If you are reading this then I am kind of assuming you are up to date with the pretty big decision I am in the process of making just now...

If not then here it is in a nutshell - I have to decide whether or not to have surgery for a spinal condition that has plagued me since it was discovered at a school medical when I was 11 years old.

It's scoliosis - and it means my spine is S shaped. You may or may not have noticed I am ridiculously short waisted and have what to me is a pretty prominent "rib hump". I am also in a lot of pain most of the time...

As a child/teenager it was a pain - shoulder straps slipped off and bras didn't fit properly. As I have gotten older it's been an increasing issue - cosmetically as it becomes harder to find clothes to fit - and physically as the pain gets worse and movement becomes more difficult....

And so - decision time! I went along to a conference for people with scoliosis. I listened to a presentation. I thought maybe I could get some better pain relief.... I was referred to Stanmore and after a wait I saw a consultant who suggested surgery is an option....

And then I had scans and rays and bone density tests...and to cut a complicated story short I saw the consultant again - privately this time - and discovered surgery is still an option but a much more complicated one than I had at first thought....

So - the next post will ask you all (and as yet there are no "you all...") how you even begin to make such a decison......

Here we are again....

Well it is three months now since I said that I would post on here more regularly to update Rachie (in Australia...) with the minutiae of daily life...

It is two months since I thought that maybe it would be a good idea to blog something about the decision I need to make re surgery for my scoliosis....

It is a few weeks since I spoke to the lovely Mr Molloy...

And it is time to update anyone who might be interested...

Watch this space....