Monday, 1 March 2010

From the heart...

Good evening - or good morning as I suspect by the time most of you read this it will be Monday morning (first opportunity to think positive - I will not be getting up and facing the aftermath of the weekend engineering works on the Metropolitan and Jubilee lines...)

It will probably be Monday morning by the time I finish writing and typing this too - I am so slow at deciding what to say, how to say it, getting my fingers to find the right keys, editing for spelling/grammar and taking out the really miserable bits, previewing and posting... add in a photo and what takes you five minutes to read could have taken me two hours to compose. Never mind -I will have something very interesting to read if - no when - this is all over.

From the above you can see that my writing tends to be from the head rather than an outpouring from the heart and soul. Yes my feelings are there but carefully edited/screened/protected for a number of reasons. If you are a family member I didn't want you to be reading how awful I am feeling - the whole positive thinking thing for so long seemed to me to mean" put on a brave face and pretend". I am working on and through what positive thinking means as that cannot be it for sure - there is simply no point in pretending I feel better than I do, and by now most of you will have seen the reality anyway!

If you are anticipating surgery yourself I did not want to be saying things that would or might put you off. But then again everyone's experience is different - you may feel none of this physically or emotionally.And without wishing to sound harsh you can skip a post and go read something more cheerful for a wee while! But please do be sure to come back.

I thought perhaps a post from the heart may be overdue. Perhaps a tad less editing, less worrying about who I may upset, designed less for others and more for myself and the need to get things out there. I'm sleeping really badly and it would be nice to think that in an hour or so when this is in cyberspace I will allowed a top up of Morphine and may just make it through to 6am... well I can dream!

I have a lot of unanswered texts on my phone and emails in my inbox and on Facebook. Some of you think I am ignoring you. Some of you probably think I am rude. Some of you may have forgotten you texted it has been so long! The fact is - and for this I am sorry - I am ignoring you. Not you personally of course - but the world in general. I was told that for six weeks I would not want visitors, that it would take every ounce of energy to deal with the pain, and that has been my experience. On a good day I have picked up the phone and sent a few replies. I have sent a few emails and messages on facebook. But typing hurts and I have prioritised the blog as it seems to be the best way of reaching the widest number of people.
Result of all this of course I feel really guilty that you are thinking of me and even sending cards etc and here I am ignoring you. But I am not - please let me assure you of that. Of course I have seen some of you and the reality is a visit does cheer me up so please keep texting to see if it's a good time...

I wasn't going to use Facebook when it came to the surgery - lots of work colleagues and volunteers on there may not wish to see miserable updates! But somehow things have crept onto there and that feels pretty much okay - in fact it's enabled me to reconnect with lots of people whose messages have moved me to tears - thanks...

So - from the heart - if a sympathetic interviewer were to be asking me now to describe the surgery, the pain, the emotions etc - where are we at? (I am momentarily distracted now thinking who would I like to conduct such an interview and as ever getting a little bit confused there are so many pretty blonde TV presenters who do this sort of thing...Holly Willoughy perhaps? Tess Daly? Any suggestions? Perhaps a more mature woman? Or man for that matter? Does DC do interviews...?)

Back to the point - from the heart - well I have to say I feel grateful. Overwhelmingly so. Assuming when I go back at 6 weeks I am told that all is well then I have been rescued from a future in a wheelchair with severe breathing difficulties. Cosmetically I have a good correction and I am looking forward to wearing nice clothes and looking taller and slimmer. I believe my surgeon and anaesthetist deserve knighthoods. I am grateful to all the clinical and nursing staff, I am grateful that we had insurance which meant I could be treated quickly, I am grateful that I am entitled to a generous amount of sick leave. I am grateful to all of you friends and colleagues and above all to my family. In case you missed their public "Oscar Speech" thank you the other day then thanks to Ian who has been working on top of everything else, and sleeping here when he could escape to a spare room!; to my mum for staying and keeping on top of the laundry, changing sheets, making sure we are fed. Ian's sister and her husband for travelling 7 hours (thanks to the roadworks) from Newcastle to stay and again cook and clean. Paul and Jemma for meals, company, pedicures; Sarah for all the shopping and making me smile, Rachel for the surprise package from the other side of the world and all the mid-night chats thanks to the time difference. And if it is fair to single anyone out - and it probably isn't so I won't - where would I have been without "L'il Man" as his elder siblings still call him? Rearranging cushions to make me comfy, running up and down stairs (younger legs than nanny!) cleaning and tidying my bedside table and lighting scented candles for me tonight, updating the blog (not as often as I had hoped!), showing me how to cast spells on the PlayStation but above all else just sitting here and (sorry -this will make him blush) holding my hand. For those of you who have had children you know there are those times when the pain just comes on like a wave and you feel so reassured by the touch of a hand, someone you know is there and who you can squeeze black and blue till the pain passes?! Dave's good at that. He takes after his big brother as I remember Paul doing the same when I was in labour with Dave actually! The thing is this time around the pain just does not go away. There is no subsiding, no wave crashing on the beach. The drugs help - still over 200 a week. And the oral morphine top ups but already I am being told that will need to stop. Of course it will - but I don't feel ready!

Seem to have moved on from gratitude to pain. Pain, pain, go away. Relentless pain that I was not prepared for and don't always know how to cope with. Calm and relaxation help but as Ian keeps reminding me they said six weeks of this sort of pain and it has been three. Way to go...

I expected to be a "bad patient". I did not expect to sit up in a pretty lace nightie eating my food nicely, taking my drugs, receiving visitors and generally being applauded for my bravery. What I had not fully thought through however was the impact on those around me of me being a "bad patient". And it is impossible to gauge how much of that impact is factual or projected or simply imagined.

I touched on this before - I am desperate to please. I therefore try not to be too demanding or even make my needs felt unless absolutely necessary. But even then it is not the physical needs we are talking about. Meals and snacks, tea and juice are all provided, sheets are changed and fresh clothes appear in the airing cupboard - thank you! If I think I have upset someone then I cry. But this is all such a shock to my system coming as I do from a management position with a team, a budget, an important role. I found this to be the case in hospital - cross the threshold and expect to abdicate all responsibility and the right to ask questions. Five maximum doses of paracetamol in a day constitutes an overdose - why feel bad for pointing this out...?

If there is one piece of advice I would offer to any family about to undergo this situation it would without doubt be to discuss - in advance (and perhaps over a few bottles of wine!) what the patient's priorities are likely to be. It may be impossible to know at first of course but make notes and work out a plan. Everybody wants to help and everybody helps in their own way but it is not easy to lie in bed knowing how hard everyone is working on your behalf, desperately grateful and thankful, yet yearning somewhere deep inside because you have been misunderstood. Which usually comes down to no one having asked the question. To put it very bluntly it is a control issue - having my spine straightened, literally placing my life in the hands of a surgeon and his anaesthetist, is massive enough without the stress of feeling that I am losing control in every other area of my life too. There are so many areas where you feel that you lose dignity and respect (have you ever been asked on a regular basis if you have opened your bowels today...?). I had never before been "bed bathed", or fed, or had a catheter or a chest drain measured and emptied. All of these things are familiar to the nursing team who take them in their stride. But in doing so it is perhaps easy to lose sight of the patient - fearful and in pain. Allowing them to retain as much control as possible has to be significant in their recovery. For me this meant things as small as wearing my own nightdresses and dressing gown, questioning and checking the little "pill pot" every day, and somewhat rebelliously deciding what time I wanted to go to sleep ;-)

Since coming home there remains this same need to retain a semblance of control - I am so grateful for the help being proferred but all the more so when first asked what that might be, and when "given permission" to say perhaps now is not the best time.

This is turning into a mammoth post. Eyes are dropping so quite excited I may sleep! Ian gently snoring so hopefully I've not disturbed him too badly.

The final "from the heart" plea is simple and selfish. It's just good to feel reassured. It was a tough decision and with all the devastation elsewhere in the world I still feel I have taken a heck of a lot of resources. At 6 weeks I will know if things look good, at 6 months hopefully my spine will have fused. I definitely want to make sure that I don't waste a minute of what is left of my life - having gone through all of this I hope to be a different, better, stronger person.

Right -time for sleep. Night night to you all and I hope that nothing I have have said has caused offence or controversy.

With love

Linda xxxxx


  1. Hi again - just wanted to say ...don't beat yourself up for not replying to e mails and texts etc. We understand. You're doing great x

  2. Hi Linda,
    I enjoy reading your daily blog.
    You mustnt worry about keeping up with emails etc-theres plenty of time for that!
    Dont worry, you dont put me off my surgery,I know its not going to be easy!
    Take care
    Sarah xx

  3. Thanks both - and that's reassuring to hear Sarah. The benefits are bound to outweigh the short term "discomfort" so we mustn't lose sight of that!

  4. Hi again Linda
    I enjoy reading too and echo what everyone else is saying - don't worry about keeping up (I have troube keeping up with things and I haven't had surgery)! You haven't put me off my surgery either, I am so glad you are writing about what you are going through as I really need to know what to expect - I have a three and half year old son and goodness only knows how we are going to manage!

    Hope today is a good day for you
    lynn x

  5. Hi Linda, it looks as though there are a few of us from SSO who are now posting, which is great. Don't worry about putting us off, you won't, it's nice that you are honest, quite a rare thing these days you know!! As for your pain, I truly do hope that you find it subsides quite dramatically over the next few weeks. Apparently, this really has been the case in other people that I have spoken to who have had the op. I was told by a relative yesterday that I would need to have a positive mental attitude when I have my operation. I did think to myself, well that's all very well for you to say, but on reflection maybe she was right. However, I know one thing for certain, I won't be a very patient, patient!! Kaz xx