Monday, 20 December 2010

Christmas Blessings

In a weeks time it will all be over. That’s what Nan would say if she was still here.

Well, I don’t want it all to be over. In fact, I don’t mind if Christmas Day doesn’t come at all. Suspend this day, and the other days that lead up to December 25th because for me, it’s the build up, the anticipation which fills me with the joy of Christmas; decorating the house, bringing the food in, meeting up with friends, hearing from people who we only hear from at this time of year.

On this run up to Christmas, I always find it’s the one time of the year when people give a little more, act a little nicer and for some, be the people they want to be all year round. A while back I read somewhere, "I wish we could put up some of the Christmas spirit in jars and open a jar of it every month." It made me smile although this year despite (or maybe because of) the extreme weather, I find there's a great spirit everywhere. It's as I’d imagine the Dunkirk spirit; people being stoical and cheery despite the circumstances, helping each other, being extra thoughtful and looking out for those vulnerable people like the sick and elderly.

Listen to me and my ‘God Bless us, everyone.’ Perhaps I’m getting older but I often find myself melancholy and reflective around this time. When I hear of people killed in car accidents, think of our men and women in the Armed Forces, learn of someone who’s having a tough time, I always feel a little more for them if it's close to Christmas, aware that from now on, instead of Christmas being a time of joy and happiness, it will always be a little bit worse.

My Granddad died just before Christmas the year before I was born and it was also his birthday in December. When I was a child, I remember asking Nan why she had sad eyes one Christmas. Now I understand why. Christmas is a sad time for many people. Spare a thought for some of my friends;
Kate Hardy has just lost her dear Dad. B, my lovely neighbour, started chemotherapy on Friday knowing she has secondary cancer. Despite numerous scans and tests they can’t find the primary source. J, one of my dearest, longest standing friends will once again spend Christmas without her husband. He’s only sixty-five but has Alzheimer’s and has been in a care home for the last few Christmas's. J will have her family around this Christmas and her friends will all be there for her, yet I understand how there may be times when she'll be in a roomful of people, yet still feel like the loneliest person in the world. Then there’s Mr Woozle. They say time’s a great healer but I bet as he faces the first anniversary of his beautiful wife’s passing, it doesn’t feel much like that.

Bless those of you who have troubles and worries in your life and know that I am thinking of you. If I could grant you one wish it is that I could take your troubles away. Of course I can’t do that so I hope instead of being sad for the whole Christmas you might spend some of the time re-living happy memories and smiling.

As I recover from my surgery there is a lot to be thankful for. Who would have thought I’d be able to eat my Christmas dinner, chomp on nuts and sing carols. Despite all the grief and worry he’s caused us, Idle Jack has a job when many don’t. And I'm thankful too that hubby is still in work. A year ago we didn’t know what might happen when his company were taken over. Spending the week in London is a small price to pay. Quiet Mousie has health worries (he’s showing signs of developing my Behcets disease) but with a wonderful Professor of Rheumatology at Birmingham Children’s hospital looking after him and a Mum who understands the disease, we can help him manage it. And let’s be especially thankful, he’s not going to die from it. Some children won’t be so fortunate this Christmas...

As mine rip open their presents on Christmas morning, I shall be reminding them that it’s not about what you get. It’s about what you give too; friendship, love and support to those who need it most.

I have everything I want for Christmas; a full fridge, the log burner exuding warmth, my lovely family and the best friends in the world, and for now, I’m grateful that my health is holding up - health is everything. So yes, I’ll be counting my Christmas blessings this year more than ever, surgery behind me and with much to look forward to.

On that subject, can I take this opportunity to thank you all for your support and kind messages throughout the year.

I wish you all the joys of Christmas and happiness throughout 2011.

Until another day

God bless us, everyone.

Wednesday, 17 November 2010

Progress II

Well I’m back. Not just back home but I’m me again. Mrs Doubtfire has left the room. It's five weeks since my surgery. And again for the benefit of anyone else facing total replacement TMJ surgery (see previous blog,) here’s my progress from when I came home...

The first couple of days out of hospital I’m as delicate as bone china. The pain is brutal. I can’t stand noise. I sleep like a geriatric, nodding off for minutes here, hours there. Unable to concentrate and read a book, I am content to flick through magazines.

Quiet Mousie grins broadly whenever I look at him, thrilled to have me home. Idle Jack has a few days off to ‘help.’ When I first hear this, I'm anxious at the prospect, and of him making his mess everywhere. While I was in hospital he didn’t visit and barely sent a message. First day home and he’s gone off to his girlfriends to stay over. It’s like he doesn’t care. That’s teenagers for you. When I eventually see him he’s sheepish. Furtive eyes. Then I realise. It’s not that he doesn’t care. He was frightened. And now I’m home and he can see me, he’s better.

I’m soon appreciative for his efforts. He makes soup and cups of teas, prepares food and does housework without me asking. We sit and re-watch the Harry Potter films 1-6together in anticipation of the launch of the latest film. By the time he goes back to work, I miss him and his good nature. I’m blessed to have my two boys.

7 days post op

The first time I go out is to have my stitches removed. Walking into my doctor’s surgery I grasp Hubby’s arm and everyone stares as if I’m Frankenstein’s monster. I apologise to the nurse for doing this to her on a Friday afternoon. It takes forty-five minutes to remove them. It could have been worse. But not much.

Stitches out - 10 days post op

I send a message to friends on Facebook and post photos. I think about writing but thinking is as far as it goes. Ideas stay locked in my head. A week later and I’m able to read a chapter of a book. Trouble is, I’ve changed the book about five times.

Progress has stopped. Or it’s so painfully slow, it’s undeterminable. Everything hurts above the neck. Parts of my face won’t do what I want them to do. I have a new party piece - I can lift only one eyebrow. The other sits like an overstuffed caterpillar about to fall off a cushion over my eye. I scrunch my face up and will it to move. My brain’s playing silly buggers with the nerves. My consultant told me there was no point doing physio, it’s futile exercising stretched skin. I need to wait for the swelling to go down. It will take time. All I have is time.

Showering is difficult, especially washing my hair so I bath. I’m unable to manage without the morphine - something to do with brain receptors, endorphins and tolerance levels, and the awful pain I had before surgery. I mustn’t feel a failure. It’s most important to stay on top of the pain. Pain will hinder healing as will lack of sleep. Just get through the days, and nights; the incredibly long nights. It’s hard to sleep propped up high in the Princess and the Pea bed next to hubby but it will reduce the swelling quicker.

Patience has never been one of my virtues. Where's the day on day improvement?
I count the days since surgery. My consultant told me it might take six months to get my jaws working. It's two weeks. I'm being negative. I am my own worst enemy, creating such high expectations. After eighteen months of TMJ pain, I thought I’d feel the difference straight away. I don’t. I need to stop this. Frustration will only set me back.

At last, a breakthrough. I try a different strategy. When people tell me how great I look, I musn't think they are simply being kind. One look at the photographs and I can see the progress for myself. With the stitches out, the scars are fading fast. When I wear my hair down it’s hardly noticeable. I look amazing, considering. Stop the negativity. Concentrate on the P words; PROGRESS. POSITIVITY and pat myself on the back daily with any progress, however small.

I thrive being more positive. I notice my jaws are not clunking when I eat or talk; the sound is more of a quiet rustling, like fabric or newspaper. I can get a toothbrush into my back teeth. More progress. I don’t spend all day watching Escape in the Country on the Home channel. I remove my pillows from the sofa and put them back on my bed. It’s best to keep sleep for night time. I start thinking of Christmas and open my organiser. I can clean my ears out. I prepare dinner and stick it in the slow cooker. And slowly, as I accept my limitations; that it’s normal, and all part of the process, I find it liberating. Before I know it, I don’t need morphine in the mornings. I care about getting Take That tickets for next years tour and spend most of the day, trying to secure them. I walk round to my neighbours, my first time out. I blog, my first blog post op.

Somewhere around the 20 Days post op mark, I turn a corner and venture down to the bus stop to collect Quiet Mousie off the bus. Driving is tricky but it’s good to be behind the wheel. With Hubby back to work I have to push ahead with domestic duties; getting Idle Jack to and from his shifts, putting washing in, hoovering. It’s slow. But I’m doing it. Every day I see progress.

A week later and I’m back to the Consultant for the post op check up. My mouth opening, 2cm is good for four weeks post op. My bite isn’t right - it was something he flagged before the op - but it's the nearest he could get it. It feels worse than it looks. To my mind, I'm Janet Street Porter wearing a pair of false plastic teeth that are about to pop out. And my teeth won't bite together so it’s impossible to eat salad or spaghetti. But it's troublesome, not insurmountable. At some stage I might see an Orthodontist to see if they can correct it without further surgery because it would be much better to avoid that. If any bacterium gets into my replacements, the only action is to remove them, have them sent off back to the USA, cleaned and put back in. By the time he's finished emphasising the perils of infection, I am clear that it's something I must guard against for the rest of my lifetime, including infections from deep back fillings or tooth extractions.

We talk about other concerns; the drooping eye, lazy forehead, numb patches, etc etc. He can see movement so he thinks it will come back; it may take days, weeks, months, maybe a year. It's normal. So are the occasional electric shocks that spasm from my jaw line down my neck. They are muscle spasms and should ease eventually. It's the same with the swelling. He expects that to take another couple of months or so. I'm progressing as he'd hoped, if not better. And he’s delighted I’m off the morphine.

Now the hard work really starts. He gives me a box of wooden tongue depressors. Five or six times every day I need to place a clutch of sticks in my mouth to increase my jaw opening. Do this for the next two months and gradually increase the number of sticks. I start at thirteen. I’ll see him again in another two months. Then six months. Then annually. Forever.

I go back home and ram the sticks in my mouth. Within three days I’m up to eighteen. It’s been slightly slower this week. I’m managing twenty-one but that's good. It's still progress.

So here I am up to date with this, my second blog post op. I'm encouraged when I see the photos of the surgery and what I've had done. I know I'm getting there. Staying positive has not always been easy. TMJ replacement surgery is complex and the recovery is a slow process. I've needed to keep some goals in mind; to have something to aim for, even when I couldn't see how I could possibly achieve them and I look forward to the time when I can sit and write the days away once more; probably in the New Year. I still have my eye on getting the second novel critiqued on the RNA New Writers Scheme. And that non-fiction book about living with chronic illness or pain and staying positive. However as I sit here, writing this, feeling more like my old self, I am simply looking forward to Christmas. A few months ago my Consultant told me that I might, only might, be able to eat a little Christmas dinner, but I wasn't to build my hopes up. Give it time. Be patient. It seems a theme, patience and TMJ problems.

The surgery is behind me and I have no regrets. I am thankful to my wonderful family, the best friends in the world and of course, Mr Bernard Speculand, one of the best surgeons there is for this type of surgery, and the excellent care and attention I had from him and his team.

Bring on the Christmas dinner and carol singing, that’s what I say.

So until another day

Bye for now


Sunday, 31 October 2010

Progress - I

I tried to keep notes while I was in hospital and am posting this to help anyone else who has forthcoming total TMJ replacement surgery.

Wednesday 13th October

As we drive to the hospital texts ping on my phone continually, goodwill messages from lovely friends and family. I take deep breathes - in, out, puhhhh - blow it away, like I am in labour. Calm me. I don’t want to panic. Help me to stay in control. Hubby reaches for my hand and crunches it tight.
'It won’t be long now. Soon be over.'

We arrive at the hospital for 1pm and it’s a flurry of activity as my Consultant wants to make an early start. He’s booked me into the main theatre for 2pm. No time to think about it. I rush to gown up and put on my stockings. Two nurses swish into the room, label me and check paperwork. The Consultant visits. The Anaesthetist visits. I regret putting my full face of makeup on and quickly set about removing it with a wet wipe.

I don’t recall hugging hubby or saying goodbye but I know I must have. By 1.30pm, I am walking down the corridor to theatre with a nurse who will be looking after me when I return to ITU. Six blue clad people greet us. The lighting is bright. One of the young men is excited at the prospect of seeing my surgery.
'You don’t get to see this procedure very often. I’ve been looking forward to it,’ he enthuses.
My gorgeous calm Anaesthetist comes in and starts tapping away at my hand, trying to find a vein. I know I am in safe hands.

When I came round in ITU I am sick, sick, sick - not good when you have two new jaws. Yet despite the sickness, I feel surprisingly well. The pain is tolerable, better than I imagined.

Hubby is beside me. I can’t see him but I hear his booming voice. ‘It’s all done – it took six and a half hours. You look incredible. Well done darling.’

Moments later - or hours later – I’m not sure, I open my eyes and look across to the ITU nurses who are sitting and chatting. One is eating a biscuit. There are no windows in ITU. I think it’s night time. They can’t see me looking at them. I can’t communicate. I am asleep but my eyes are open, staring at them.

Thursday - Day 1 post surgery

Suddenly it’s busy. There is a clock in front of my bed and I see it’s 5am. Two nurses arrive, bowl and towels in hand, place clean sheets at the bottom of the bed. They give me a bed bath – wash gently from top to toe and sprinkle me with talc. All the time, they chat away. For the life of me I can’t remember what about.

Less than twelve hours later Rob, a gorgeous American nurse in navy blue scrubs (must be a 'sister’) tells me I am ready to leave ITU and go back up to my own room on Colmore Suite.
‘You look fabulous,’ his accent twangs. ‘There’s hardly any swelling or bruising. Now don’t you go getting into any fights.’

He must know what's to come.

I sleep until hubby returns. He’s still enthusing about my face; it nothing like as bad as he thought it would be. His words are reassuring. I know I’ve done really well. The worst is over.

As well as the morphine which I control myself with a pump, they pump drugs into me; More painkillers. Antibiotics to stop infection. Voltarol and Diclofenac, anti- inflammatories. Blood-thinning medication is ‘stapled’ into my stomach for good measure. I feel punch drunk with drugs. But by tea time on the second day I am alert and able to eat small amounts of soup and a couple of mouthfuls of cottage pie.

All the medical staff tell me I look wonderful, considering.
'I told you,' says Hubby, snapping some photographs. I read somewhere and my Consultant told me that taking photos of recovery can be good for moral with this type of surgery when progress can be slow. It helps to see improvement when you think there is none.

It’s an effort to talk, open my mouth or eat. My jaws clunk and pop as if they’re the internal locking system of a car. But I’m eating. It’s progress.

My Consultant is really pleased. He thinks my forehead looks ‘lazy’ - a bit like I’ve had botox - but apparently it’s normal. People pay a fortune for this treatment. I’m glad he’s pleased. Like a child, to please makes me feel as if I am doing something well.

Friday – Day 2 post surgery

The nurses keep checking me. ‘Are you sure you’re okay? Is your pain manageable?’

I'm trying to be a good patient. I was never a moaner until I had these jaw problems and now they are replaced, I want to go back to being my old self – the happy go lucky, cheery girl who sometimes has pain but gets on with it and doesn’t let it control her life.

It's painful, but a different pain to pre-surgery. I know the discomfort will improve. My nose feels twice the size and is numb. I could slice it off and not feel it. And my ears, and large patches of my head. I was told to expect numbness, maybe for months.

I ask for the catheter to be removed so I can start moving around. Progress. They duly oblige. A couple of hours later, they also remove the Bet Lynch chandelier drains that dangle from my head and neck. Progress. Hubby returns later in the day. I think I see him shudder as he walks into the room but when he speaks, he’s as positive and encouraging as ever.
‘Your face has swollen a bit since earlier,’ he says, still sounding positive. ‘But you still look great.’

He takes more photos of my progress.

I glimpse them and don’t think I look too bad either.

However by the time he leaves an hour or so later I can hardly see out of one eye. The drains must have been stopping my face from swelling. The eye tears permanently.
The inside of my mouth is exquisitely sore. Everything feels over-sized. Running my tongue over my gums I can feel grooves, like a cheese wire has cut into them. It’s where they wired my jaws for a few hours post op. I don’t remember them being removed.

I ask a nurse to help me to the toilet. Progress. It’s my first time out of bed on my own even if I think I'm going to pass out as I sit on the commode. My face is about to explode, it's so stretched. But I want to get a shower and my Consultant asks the nurses to try and wash my hair to keep infection at bay.

I will always remember that first glimpse in the bathroom mirror. It isn’t me. Tiny, tiny eyes filled with pain stare back in horror. They're not even my eyes. Mrs Doubtfire is the first person to spring to mind. My face is an enormous pastry, doughy mixture; my neck, more swollen than when I had mumps. I manage a shower but not to wash my hair. I have a constant urge to keel over. Small steps. I managed a shower – that’s progress.

My best friend visits and I want to cover myself over with the sheets and hide away. I don’t look as bad as she thought. She is kind.

My little boy, Quiet Mousie visits. I expect to see horror, even fear in his eyes. But his gaze never once averts. He sits chatting away and smiling, a huge beam that brightens the room. He’s simply pleased to see me. All I see is his cheerfulness and love.
‘You’re still the same Mummy underneath there. And I can see your eyes.’ He kisses the top of my head ever so gently with cushioned lips.

My little golden nugget of treasure. He can still see my eyes, when I can’t. It gives me hope, and something to cling to because when I look in the mirror, it doesn’t get any easier seeing Mrs Doubtfire staring back.

Saturday - Day 3 post surgery

I crash.
Too unwell to do anything. Can’t eat or shower. Don’t wash until past 11am.

I feel sick, so sick. My wrist has swollen. My nose oozes gunk. My veins are shutting down on the intravenous drips. They have to re-do them in case it’s an infection. My consultant thinks it's viral. Have I had chickenpox? I won’t be able to go home until at least the end of the weekend. They pump yet more antibiotics. My mouth flares with ulcers. I have vaginal sores. I think it’s thrush, perhaps from the catheter.

My neighbour calls in to see me but only stays a few minutes when she sees my state. It’s too much effort to talk.

Later, I perch myself up in bed to look outside. Autumn had it’s foothold on the leaves of the trees in the car park. The yellowing leaves of a Beech swirl and fall to the ground, and simultaneously tears fall from my eyes and splash onto my nightie; tears of self pity that I feel so unwell mixed with a realisation that I have a long, long road ahead of me.

Hubby and Quiet Mousie arrive. I try to talk but give up. They gibber about footie scores and the Shrewsbury Town Match they’ve been to in the afternoon. Idle Jack is working. Hubby asks if he’s sent a message. He hasn’t. I wonder if he’ll come tomorrow as it’s his afternoon off.

Progress. After they leave I drag myself up and pull back the vertical blind to look out to the car park below to try to wave them off. The car park glows orange from the street lights until I see their shadows flit across. Hubby walks with a purpose and Quiet Mousie skips to keep up. He catches sight of me and waves madly, his delight obvious. My little lad doesn’t take his eyes off me as the car reverses out of the car park, indicates, and turns into the adjacent road. He's still waving.

I shuffle back onto bed, relaxing my aching jaws from the perma-smile position and grimace in pain. It’s a long night ahead. It must be bad - I snooze through X Factor. Hubby’s text stirs me. He and Quiet Mousie are sitting in the car waiting for Idle Jack to finish his shift. They’re eating fish and chips. I text back. What I wouldn’t give for ‘fee & chee.’ Give Idle Jack my love. Xx Sending a text. Progress.

A few minutes later my stomach collapses inwardly and I have to dash to the toilet. It cramps and I’m doubled up. I fret. Maybe it’s an infection. Maybe my body is rejecting my jaws; I’m allergic to the metals after all. Maybe I’m overdosing on all the drugs they are giving me.

I receive a text from Idle Jack. It’s a lovely text. He says he’s missing me and hopes I feel better... and the house is tidy. I know his Dad has cattle prodded him to send me a message.

Preparing for the night ahead, the nurses bring me a drink and my drugs, along with the dreaded warfarin that she staples into my already sore stomach. She sees the pain I’m in and asks if I need to see the on-call doctor about my colitis.
'You must shout if you need anything else. I'll leave the door open and keep an eye on you.'

She’s very kind. They all are. As I lay, trying to find a comfortable position to nod off, I tell myself to be patient. It’s only been five days. I was told it would be a long, slow process. For such complicated surgery, I’m doing well.

I’m back on the toilet within an hour. As I sit, I realise that the sores ‘down below’ are ulcers not thrush. Ah, it’s just my friend, Behcets syndrome, reminding me that it hasn’t left me. I have to respect it. And listen. It’s bigger than me. After twenty-five years I know when I have to back down and take notice. I don’t need to prove anything or be superwoman. Behcets is the reason I’m here.

Sunday - Day 4 post surgery

The tea trolley clatters down the corridor at 6am, and I know it’s going to be a tough day. So it’s a pleasant surprise when I rouse and don't feel as bad. One moment I'm tired. The next I am in pain. But in between I feel strong. Feeling is beginning to return to parts of my face and head. My ears pop and crack like fireworks going off. My teeth are on edge. The pain is more in my cheeks than my jaws. The swelling hasn’t worsened.

The nurses manage to wash my hair which makes me feel better. My neck hurts more than my head.

The physiotherapist comes. He wants to make sure I’m not getting a chest infection. He asks me to do the stairs with him. The consultant needs to know I can do them before I’m allowed home.

Two close friends come to visit. One of them brings a packet of Rolos and Fruit gums as a joke. I can’t stop laughing. It still makes me laugh, thinking about it. After they've gone I flick through a magazine, more progress.

People are so kind. I’ve had some lovely cards and messages of support by text and e-mail. Progress. I start to send some replies.

I sit up and move to the window to see Hubby and Quiet Mousie arrive. I want to show my little lad how I’m improving. I’m disappointed when I see Idle Jack isn’t with them. Quiet Mousie runs around the car park to me and in no time is sitting beside me as before, lighting up the room with his smile, stroking my bruised hand gently. I ask about Idle Jack. He’s at home, Hubby he plays it down. I suspect they’ve had words and drop it.

They are only gone an hour and my best friend comes again. She can’t believe how the swelling has improved since she saw me two days ago. She sits with me and we watch X Factor together. I don’t fall asleep this time. Progress.

Monday – Day 5 post surgery.

I wake expecting continued improvement after yesterday but am weak and listless. I hardly slept last night with pain and my stomach. My high expectations make me feel I've stepped backwards.

My Consultant calls in early. He agrees that it’s the Behcets. With any auto-immune disease, my body is bound to react after such surgery. He asks if I am ready to go home. Am I sure?

Home. Where my heart is. To see my boys and the countryside. And so much easier for everyone than stuck over in Birmingham.

'Yes please, I’d like to go home.'

I’ll make better progress when I’m home.

Until another day
Bye for now

Tuesday, 12 October 2010

This is it. Bye for now

Hurricane Debbie. That’s what they should call me today. I’ve just sat down to take a breather between hoovering, dusting, cleaning bathrooms.

I’ll never get it all done before I go in hospital tomorrow. Why do us women nest like this? I’m the same at Christmas, before I go on holiday, if I go on a writing course, and now before I go in for my surgery.

There are a million things to do but I am compelled to make sure the house is clean, the washing is up to date, the boys all have shirts, school uniform, Chef whites lined up for the next few days.

I know they’ll be fine. It’s not as if they’re babies. They’re all quite self sufficient (they’ve had to be with my health.) And my hubby is a gem at times like these. Even with his mountain of work, he’ll cope wonderfully as he always does.

'You don’t need to do all this, we can do it,’ he chastises me.

I know they can. But making sure everything is in order is my way of having a little control. It makes me feel better; gives me peace of mind, knowing that while I’m away, they will all be okay. And lets be honest, being busy distracts me.

The pre-op on Thursday made it all feel real. Pulling up on the car park of the Priory, Birmingham my stomach collapsed inwardly, my legs turned to Bambi and my heart banged against my chest, attempting to escape.

I can’t escape. It has to be done. I know it will all go well. I have the best surgeon in the country for this complex surgery.

Because of my health complications the Anaesthetist wanted to see me at the pre-op to check a few things. He’ll come to see me tomorrow too beforehand. It helps that he is completely gorgeous. His bright green eyes are intense but kind, his presence is reassuring. He anticipates my surgery lasting at least seven hours and I have to be catheterised (which I've never had before) but the good news is I won't be on a ventilator - they need me to be alert, to keep my airwaves clear and get me mobile as soon as possible afterwards. Being on a ventilator was one of my fears so that’s good.

So, the plan is, I go into hospital tomorrow (Wednesday) at 1pm and in view of the length of surgery, should go down first (about 3.30pm) to theatre. All being well, I should be finished by about 10-11 pm and straight into intensive care. It depends how I get on the first day whether I'll stay in intensive care another night or go to my own room. Do you want to place your bets now as to how long you think I’ll be in there? You bet. I’m hoping to be home for Sunday or Monday.

Don’t worry. I'm a good patient so I won’t rush things. I’ve had enough operations to know it’s best to do as I'm told. And at least at the other side of all of this, I will be able to be proactive at helping myself recover. For the last year and a half I’ve been helpless and at times, terribly depressed, overwhelmed by pain and the misery of my whole predicament.

At last, this is what I’ve been waiting for.

I have never been more frightened about any operation than this. I wish Woozle was still with us. I miss her. But I know she’s with me in spirit and wishing me a speedy recover. I will get that cup of tea and huge slice of cake at De Grays very soon.

One day. One precious day. One drop of time.

I’ll see you when I see you.

Until then

Bye for now


Sunday, 3 October 2010

Season of mists and mellow thoughtfulness

Seven days home and already my tan is washing away in the inclement weather. Loads of washing almost complete, the ironing beckons. Quiet Mousie has settled back into school. Idle Jack once again looks handsome in his chef whites.

I sit at the island in the kitchen and look out. Outside, the world looks an oppressive grey and the hills sit in suspended animation on the horizon with rain-filled clouds sagging over them, waiting to burst. Autumn has applied its brush strokes to the surrounding countryside. Leaves have turned to browns and ochre as green chlorophyll is leached from the trees. Hedgerows bulge with brambles and hawthorns. Elderberry and apple trees bow under the weight of fruit. The swallows have gone but finches, buntings and sparrows flock across the country lanes. Fields lay bare; the harvest gathered and already turned over by ploughs leaves pheasants and partridges exposed. Next door’s straw is stacked against our fencing for winter use. In our courtyard, freshly delivered logs sit neatly stacked, ready for the first fire of the season.

Antigua is a distant dream and as my list of things to do grow in my Filofax, I begin the countdown to surgery.

13th October has a large red circle around the date. And I’ll confess to being ever so slightly in a panic. About everything; the domestic arrangements and whether I’ll get it all done in time, the children, the animals, the housework (I haven’t nested like this since I was last pregnant.) Most of all it’s the thought of six hours of surgery and waking up in intensive care, and the long recovery. This is the biggest thing I’ve had over my thirty years with Behcets disease.

It’s hard. I’m frightened. My chest has taken on the feel of a cage. A bird flutters constantly within it. My insomnia has returned. However with the electric blanket now on the bed, my duvet cocoons me and getting up in the night doesn’t have quite the same appeal in autumn and winter. So I stay huddled beneath, staring up at the vaulted ceiling, watching the oversized illuminated digital clock project itself up onto the bedroom ceiling, the rhythmic flashing on and off, on and off, as the second’s ticks away and morning draws closer.

On Monday 5th October my replacement jaw joints will wing their way across the Atlantic and wait for me in a lab in Birmingham. 7th October is pre-op day. I’ve treated myself to new slippers, pyjamas and a ‘cardigown,’ an ideal jacket rather than full length dressing gown, made of soft fleece fabric. Nan would have called it a bed jacket. I had a facial last week; a vain attempt to prepare my skin in addition to the copious amounts of bio oil I slap on my face. My hair has been a dilemma. I contemplated having it all cut off so it wouldn’t be so noticeable when they shave each side, but then figured that it’s probably best to leave it long - that was idea of growing it in the first place – it would be better to help cover the swelling. And after surgery, I can always have lots of layers cut into it to disguise the scars.

I miss writing. In between the fuzz of chaos, I think about writing and my projects. For now, I must be content simply with thinking about them. Usually at this time of year I would be picking elderberry’s to make wine, plucking rosehips to dry in the airing cupboard ready for Christmas garlands and pot pourri, thumbing through the charity catalogues for my Christmas cards.

There’s no time for any of it. I need to prioritise. And remain positive.

In two weeks time it will be over. By Christmas, my consultant tells me I might be able to have a little food. Hopefully, soon I will be able to eat a banana, hug and kiss people again, talk and yawn without it feeling as if my jaws are dislocating, turn over on my side in bed, brush my teeth properly and visit the dentist. In a year’s time, life should be much improved. After the eighteen months I’ve had, it will be good to have my life back.

So until another day

Bye for now

Sunday, 12 September 2010

The last swallow. The end of summer

A bird dive bombed our barn window yesterday as I stood doing the ironing. It’s a common occurrence up here on the hill; birds disorientated by the trickery of light from changing skies, that or being chased by Bobby, our ten month kitten as he hones his hunting skills.

I dashed out to see whether (as is often the case) the bird was simply stunned. A swallow with a slightly dull metallic blue jacket and tail streamers lay twitching on the decking. The absence of the usual russet colouring told me it was a juvenile, probably from next doors field shelter which is onto the third clutch. It would never have made it in time to migrate with the others anyway.

Most of the swallows departed a couple of weeks ago, two weeks earlier than last year. As they prepared for their journey to warmer climes, I knew there would be no Indian summer. The air thronged with their song; a rambling warble of trills and twitters, reminiscent of radio interference. Large flocks perched on wires and practised their aerial acrobatics, circling gracefully overhead and swooping low over the garden and fields in front, entertaining us one last time.

Meanwhile, the only flutter from the swallow in my hand was from the breeze which fanned its feathers. His head hung downwards. I waited a couple of minutes but nothing. Even Bobby, who had been smarming expectantly against my legs rolled his eyes, flicked his tail in disgust and stropped away in the direction of the blue tits chirruping over the buddleia, eager for more action.

The swallow had died and with it, in the blink of an eye, the last of summer disappeared. What a summer it has been...

It’s a blog all of it’s own, and a very long story but this summer I found two sisters whom I have never met. Until a few years ago, they didn't even know I existed. They say truth is stranger than fiction. You couldn’t write my life story. No-one would believe it.

I’ll always remember it as the summer that Idle Jack became a man. We found out at the end of last term that he had been skipping lessons. He even missed an exam.

His year at college was supposed to be re-taking the GCSE’s he'd failed at school.Instead, he spent a year doing nothing, or nothing to do with enhancing his education. We’d had enough. Having tried everything; positive parenting, grounding him, withdrawing privileges, it was time for tough love. And it was tough.

We told him we wouldn’t support him to go back to college - it was time to get in the real world; get a job. We suggested an apprenticeship; Trainee chef. He would always find work as a chef; he could go on a cruise ship once he qualified, maybe travel the world. The girls all love a chef.

He resisted, of course. He came back from his first apprenticeship interview regaling us with how it had gone, how the head chef had praised him, the questions he’d been asked and how grateful he was that I’d helped him with his interview technique. The following day while he was out, I had a phone call. It was the manager of the restaurant, ringing to re-arrange the appointment my son had cancelled due to a family crisis.

Oh, there was a family crisis that night, I can tell you. My son, Idle Jack - now Walter Mitty.

I drove him to his next interview and sat outside, waiting for him.

“They said I did really well,” he gushed, as he came out after only ten minutes. “And they want to offer me the job. I have to ring them tomorrow to let them know whether I’d like it or not.”

I ask you. In today’s economic climate. I still don’t understand what he was thinking.

Needless to say, he didn’t have time to take his shirt and tie off when he got home before I made him ring them back to graciously accept their kind offer.

It was the right decision. A couple of weeks after starting the apprenticeship it was GCSE results day. This was one occasion when I would have been happy to be proved wrong. But I wasn’t. Eldest son failed all his re-takes. It had indeed been a wasted year.

Academia isn’t for everyone, I told him, putting on my best positive voice. This summer he’d turned it around; he’d got himself on an apprenticeship - a worthwhile career plan - in a couple of year’s time when all his friends are leaving college and Uni looking for a job, he’ll have the advantage.

Six weeks into the job, I’m beginning to think I might have to change his nickname. I can’t exactly keep calling him Idle Jack when he works in a kitchen from 10am until 10pm, on split shifts.

But in true Jane Austen (and Helen Fielding) style it is a truth universally acknowledged that when one part of your life starts going okay, another falls spectacularly to pieces. As hubby and Son No 1 ride off into the sunset in gainful employment my next set of life challenges spring up as sure as night turns to day.

With major surgery knocking at my door, my youngest son has to see a Rheumatoid Paediatrician tomorrow. He keeps getting deep necrotic ulcers in his mouth and after several appointments with Paediatricians and numerous blood tests the worry is, he may be showing signs of developing my Behcets disease – certainly, his immune system seems to have been compromised.

It’s another worry, to add to the many. But then that is life, full of ups and downs. Seasons change. Some are harder than others.

For our house, the summer has gone, along with the swallows, winging their way for winter in South Africa.

We’re off too – not emigrating, but we’re going to the Caribbean on Tuesday for some sun, fun and relaxation.

After the summer we've had, we need it.

So until another day


Thursday, 2 September 2010

There's no such word as Can't

What’s your mantra?

There’s no such word as can’t

This is mine because I believe that when you really, really want something you must never say the ‘C’ word. You can do anything if you set your mind to it.

My Nan drummed it into me at an early age. Whether it was schoolwork or music, dance or athletics, whenever I said ‘I Can’t,’ Nan would look me straight in the face, her expression serious and retort with gusto, ‘Of course you can. There’s no such word as can’t. Keep trying.’

Sometimes, I puzzled and fretted over her words. There were lots of things I couldn’t do. I couldn’t get A+ in Maths, however hard I tried. I couldn’t get my souffl├ęs to rise like Margaret Owen in Domestic Science classes. I couldn’t run the 100 metre hurdles in under fourteen seconds.

Years, and countless times later of Nan batting those words at me, I found I’d developed huge resilience, a staying power, a dogged determination that nearly matched her strong will. My never say never attitude served me well in my career, personal life, health – especially those times when ill-health threatened to ruin everything. And with the successes came confidence, and a belief that if I tried my very best and kept going, then maybe I could. Nan was right. There really was no such word as Can't.

Now on the second anniversary of her death, whilst I recognise it’s a mantra I’ve maintained most of my life, I have to confess; over the last year or so there have been times when I’ve been lost as I floated in limbo, endlessly waiting for the surgery that’s going to miraculously improve my physical and mental well-being.

Last week, I had to give myself a swift talking to. I’d done so well over recent weeks and had come out from under the duvet where I’d been hiding.I’d stopped swimming because it hurt my jaws to push my chin forward. Or that was my excuse. I couldn’t be bothered. I preferred to sit home and wallow in pain and gloom at my predicament. But a few weeks ago I realised I missed it. Swimming helps the rest of my bones not seize up. It stops me feeling like a lump of lard. And whether it hurts or not, swimming isn’t going to make my jaw problems any worse.

I’m now back swimming four or five times a week. Already, my body tone has improved which makes me feel better about myself and I know I’m preparing myself, physically and mentally, for what’s to come. Exercise has helped the endorphin levels - perhaps it’s psychosomatic, but I feel as if I’m coping with the pain better - I’ve certainly stopped going to bed in the afternoons to shut down from it.

But swimming alone isn't going to help me. I need something to stop me going backwards, sliding towards the open jaws of the black dog of depression.

Come on, Deb. There’s no such word as Can’t. I have to fight back.

It’s easy to say. But the most difficult thing with my periods of ill-health (and other adversities,) is finding the strength to believe in myself again.

As I sat there, feeling sorry for myself, frustrated at the lack of control, I summoned all the positive thinking and strength I could muster for the a final assault. Knowing myself as well as I do, I need a plan or plans. I need goals; something to work to, something to look forward to, something to help distract me and not dwell. Most of all, I need to believe.

Fed up of waiting, we booked a holiday for the 15th September. I may as well be in pain in Antigua as sitting home, looking at the four walls and waiting. We all need the holiday and it will be good for the boys for us to have some proper time together, and if we don’t get away now, it might be months. We’ve had to cancel two holidays because of my health this year.

Next, I chased the hospital and the manufacturers of my replacement joints in the USA tmjconcepts - I sent a nice, but strongly worded e-mail. I can't go on like this. I need an idea of when the surgery is. I have to make certain domestic arrangements. With a husband who works in London most of the week and two boys to organise, it’s not unreasonable to at least have an idea of when the surgery might be, is it - especially if, as I’m told, I might be out of action for several weeks.

On the writing front I would like to announce that I am OFFICIALLY a writer, not because I’ve been accepted for publication, but because I’ve had my first rejection for Living in the Past from a publisher. Well, that makes me a proper writer, doesn’t it? So I've also made a few writing goals which I need these to keep focussed because there were times this year when I gave up - it didn't last, of course - after a few days, I felt anxious, restless and unfulfilled. Writing is the milk in my tea; the fondant on my cup cake, the ice- cream on my jelly.

I intend to finish Country Strife, my second novel and get it on the RNA New Writer’s Scheme for 2011. I’m going to finish the two stories I have in mind for women’s magazines (and submit them.) Finally, I’m going to push on with my idea for non-fiction book about living with pain/long term illness – nothing gloomy or self indulgent - something light with some positive messages. I think it might also be cathartic.

There we are. I have a plan. I feel strong. I have my mojo back. It's just as well.

Last night I had an e-mail from my Consultant.
"How does the 13th October sound for your surgery date?"

Nothing comes to he who waits.

“You can do it. Believe. There’s no such word as Can’t.”

I miss you Nan. But you’d be proud of me.

Until another day

Thursday, 19 August 2010

'Living in the Past' is history

Well, I’m back from the Mother-in-law’s-caravan; a whole week of self imposed writer’s retreat because I didn’t feel quite up to going on any writing courses or holidays this year while I’m waiting for my surgery.

And it’s been a productive week. I return with several thousand words added onto two of my novels, proposals for two non-fiction books, a couple of articles, one short story, and multiple lists of action points and ideas. Not bad. And the beauty of being away from home, the family and housework, is I didn’t feel guilty about writing once.

But it wasn’t always easy, maintaining the self-discipline and it took me a couple of days to get into the swing of things. In fact I have a confession to make. I wasted the whole of the first day dabbling with a possible re-write of Living in the Past.

Stop! I hear you shout. Surely ‘Living in the Past,’ (previously known as Tango Man,) is now complete? Yes, you’re right. I’ve lost track of the number of times I’ve tinkered with it, and I’m not talking just a little tweaking but three complete re-writes and numerous cutting and editing besides. I think this is the third year I’ve spent on it. And it’s not as if I ever thought it was the novel that would get me the Booker prize (indeed whether it will even ever attain publication remains to be seen.) I accept this because I recognise the novel served me well in terms of learning the craft of writing – serving my writing apprenticeship – and it was a story I was compelled to write. It’s been critiqued by the professionals, it’s had some positive feedback so I’m as happy as I’m going to be with it. And after all the hard work, I’m going to start sending it out to agents.

I don’t think it’s the elements of the story that keep drawing me back to tinker – the Nan, the husband, the betrayals, demons – they are all in the PAST and I worked through much of it years ago. So why the meddling? Why do I keep going back to it?

Is this normal behaviour for writers - this obsession, the pursuit of perfection? Do you have a piece of work or novel; something that you can’t stop going back to, something you can’t let go of in writing terms? Or tell me is my OCD towards my first novel simply habit or comfort, or maybe even lack of confidence towards moving on.

Anyway, it’s time to move on. I see that. Besides everything else, I’m fed up of looking at it. To mark the occasion (in addition to the blog,) I’ve penned a magazine article and a rough outline of a non-fiction proposal, all about living in the past and how to move on.

This blog is my promise to myself to let it go. It seems somehow symbolic.

So until another day

Bye for now

Tuesday, 27 July 2010

Writers=Sales People

In today’s ultra competitive writer’s market, selling yourself is an important factor, like it or not. And I don’t.

Since Tango Man (now re-named Living in the Past) returned from critiquing under the New Writers Scheme,I’ve done the tweaks suggested, re-written the synopsis and have my query letter prepared, ready with a list of agents to approach. Unfortunately, my pen lost momentum when it came to the Biography. After the initial panic, I sat down and deliberated...and cogitated. For hours.

It’s easy enough to scribble a couple of lines that describe who you are but when it comes to showing why you’re someone to read, it’s a different matter altogether. And the trouble is, when it comes to self promotion, I’ve never been very good at that type of thing. Yes, I know, I can hear you all saying this is the girl who was in sales and sales training for most of her working life, and it’s true; I used to be able to sell the proverbial sand to Arabs but when I retired from my job in the Bank, it knocked the stuffing out of me. And with my ever decreasing confidence over the last year as my health problems consume me, (there’s nothing like being unable to do something due to ill-health for making one feel incompetent) it leaves me feeling that there’s not much to sing about in terms of successes .

Am I being hard on myself again or is it simply part of being British? I can’t help thinking that many of us feel uncomfortable with this ‘sell yourself’ aspect of being a writer. My Nan used to say, “No-one likes a big head.” She taught me humility, how to hide my light well and truly under a bushel. However, the trouble is, if I want to progress my writing I’m going to have to sell myself to an agent and publishers, to bookshops and to my readers and having reached this rather crucial stage along my path to publication, I need to do something about it. I need to overcome the biography barrier.

For the last week or so I’ve been searching for inspiration. I read a lot (like most writers) and I thought a good place to start would be the books on my bookshelves. Having analysed the inside covers to crib off the experts, there seems to be a pattern. Here’s what I found: -

Good news – Biographies are only about three lines long, four at most.

Line one tends to be qualifications, highlighting any degrees and certifications the author has. Here’s where a degree in English or Creative Writing comes in handy because I doubt my ‘O’ Level English will have the same clout. Of course, not every author has an ‘Ology.’ Many fiction writers seemed to have been English teachers in a former life, or had careers in journalism. This biography business is about selling yourself; shouting to the world that you are qualified in some way to write what you write. I had to retire from my job as a Bank Manager aged thirty two. No matter how much I fanny about with that snippet, I can’t make it sound exciting. Hmm, I don’t suppose being editor for my local Parish News counts as journalism?

The second line seems to tell why the author is writing the novel/articles/non-fiction book or what prompted them to start writing in the first place. It let’s people know why their work is worthy of attention or if they have an area of expertise.

Okay, so this is where I start to see I might just have a unique selling point - we all have them; we just have to look deep within ourselves. Because if this is where the author makes themselves look attractive to publishers and the market (and even forms the basis for their overall marketing,) at least I can see I have an angle for that non-fiction book about living with Chronic Illness and Pain, or the novel I’ve outlined titled, ‘Smile through the Pain.’

Can you imagine the line, “Debbie is inspired to write for other women, to share her experiences and offer insight...?”

I digress.

This part of the biography is also where the writer tends to note any awards or competitions they’ve won.

Right, I’m back to being negative because I haven’t won any competitions, although last month ‘Baby Blue’ was short-listed and highly commended by Sue Moorcroft for Writers Forum Magazine. Some writers might also include here any publishing successes, however small. Hmm, do you think anyone will be interested in the poetry competition that I won for the Yorkshire Evening Post thirty years ago?

The last sentence of the bio tends to be more personal. For many authors this is where they share with the reader the number of children, pets, and anything else that might be of interest, like where they live. Easy peasy. I can do this one - ‘I currently live in rural South Shropshire with my husband and two sons.’

The final point I will make about the biographies I looked at is that few of them are ordinary. There are some amusing and original biographies around - like best selling Romantic Novelist, Katie Fforde, who on the inside cover of Highland Fling reads:
‘Katie Fford lives in Gloucestershire with her husband and some of her three children. Her hobbies are ironing and housework but unfortunately, she has almost no time for them as she feels it is her duty to keep a close eye on the afternoon chat shows...’

Of course the fact that Katie has more than fifteen best sellers means that few readers give a jot about her writing history. Her success proves her pedigree.

With my limited background, I might learn a lot from Katie’s quirky format. And on that note, rather than writing about my biography, I’d better get on with actually writing my biography. Perhaps, with the help of friends and family I’ll be able to make the most of myself, my abilities and my interests. With any luck, by the time I’ve worked down the list of agents, I might have won something or made inroads into the women’s magazine market and had something published.

What is it they say - ‘success breeds confidence?’

Until another day


Thursday, 20 May 2010

I'm still here. Kind of.

I am in limbo. I’ve been like it for months; floundering, poised up on the top of the hill in my barn, I sit at the island and look out in a state of suspended animation. I am still waiting for the bilateral TMJ replacement surgery. Sorry, I’m conditioned to the medical terminology after a year of injections, investigations and unsuccessful surgery. What I mean is both jaws are to be completely replaced.

“Too much talking,” my husband jests. Not any more. My precious talking. Lordy, how I miss it. And eating, sleeping and yawning. I hardly go out. I’ve tried, but I only suffer afterwards, and I’m not the best company at the moment. I hate to moan but I do anyway. It’s so unlike me. Twenty-three years with Behcets disease, and I’ve never given in before. Having chronic pain can be wearing at the best of times but being in constant pain in my head, jaws and ears is all-consuming. Imagine the worst toothache, earache, abscess, neuralgia pain you have ever had. That’s what it’s like day in, day out. So I hermit; I sit, and wait for the replacements to be custom made. Imagine, in a few months time, I will be walking around with jaws that were made in the U.S.A.

A few of you have missed me and for that I am grateful. I miss me. Some days a catch a glimpse of my old self – she comes out and gives me a swift kick up the derriere and tells me, “Stop feeling sorry for yourself,” “Don’t let the ‘black dog’ get you,” “Think of all the people worse off than you.” I tell you who I do miss – Woozle. She would tell me what to do.

Since I finished the (third) re-write of Tango Man I have crashed creatively. The second novel has stalled. I have a trio of novels in my head which, if I gave them half a chance, could become a Saga trilogy but I don’t have it in me to get them down on paper. I have a couple of unfinished short stories that I intended for the women’s magazine market. Oh yes, and I keep thinking about writing a non-fiction book about 'Coping with Chronic Illness and Pain.' However, all I do is think about it, then I change my mind because I don’t think I’d set a very good example for someone who fights long term illness and pain and copes when I don’t some days.

For those who are interested, 'Tango Man' is now being critiqued under the Romantic Novelists Association New Writers Scheme. And hey, I’ve written a blog. Think of all the positives. It’s only taken me five months. Surely, I won’t have long to wait for some news from my Consultant. We’re hoping August for the surgery. It doesn’t seem that far away now. Maybe this is the beginning of the great fight back. I’m known for them, but then again...

Until another day

Bye for now