'P' is for ... Progress and Positivity

I haven't blogged about my progress for a while so when ‘P’ came up, I thought it would be the ideal word.

For anyone new to my blog, nearly five months ago I went through major surgery - total jaw joint replacements (both sides) caused by arthritis, one of the manifestations of my Behcets disease.

Did this really happen to me?

Was it really the 13th October that we drove to the hospital - me taking deep breaths, in, out, puhhhh, blowing away, like I was in labour - trying to calm myself, and not panic, and hubby kept reaching for my hand, covering it with his and crunching it tight as he tried to reassure me. 'It won’t be long now. Soon be over.'

Nearly seven hours of surgery later, and I came round in ITU and was sick, sick, sick - not good when you have two new jaws. Hubby was beside me. I couldn’t see him but I could hear his deep, booming voice. ‘It’s all done – it took six and a half hours. You look incredible. Well done, darling.’

On the one hand it feels as if it was yesterday. On the other, when I see the photos, it might have been ten years ago. When I did my last blog about progress, I think it dawned on me then that it was going to be a long, long road. And it has been.

I will always remember that first glimpse of myself in the bathroom mirror after surgery. It wasn’t me. It didn't even look like my eyes. Tiny, tiny eyes filled with pain stared back in horror. Mrs Doubtfire was the first person to spring to mind. My face was an enormous pastry, doughy mixture. My neck, more swollen than when I had mumps.

Feeling as delicate as bone china for weeks after the surgery, there were times when progress stopped, ir it was so painfully slow, it was undeterminable. The pain was brutal. Everything hurt above the neck. Parts of my face wouldn't do what I wanted them to do. I developed a new party piece - I could only lift one eyebrow. The other sat like an overstuffed caterpillar about to fall off a cushion over my eye. My brain played silly buggers with my nerves for months. I couldn't stand noise. For weeks, every small step was progress; a shower, washing my hair, brushing my hair, pulling a top down over my head.

Now I am me. No more Mrs Doubtfire. There has been so much progress, although I still wonder if there will ever be a time when my jaws feel as if they are mine, rather than mechanical.

The most significant progress, is I have no TMJ or jaw pain. I stopped taking morphine months ago, and don't take any pain killers for my jaws.

The scars have healed wonderfully. The two on my neck are still pink, deep and painful - they feel sore and sometimes pull, although it helps when I rub in copious amounts of bio oil. And the ones in my head ache but otherwise, the scars around my hairline and ears are barely visible. I can turn my neck and drive without thinking about it. Sometimes it feels a little sensitive if I wear a scarf as it rubs, but nothing much.

There are tender patches on my head that feel as if been scalped – hair might have been yanked from my head - and it still feels tender, almost bruised on parts of my forehead and eye socket.

I still can’t sleep on right side as it hurts to put my head and ear down. And if I turn on my left, I have to lay with my head angled on the pillow so that my ear sits below the edge or between a gap to cushion it.

Most of the feeling has now returned to my face but all around my hairline, the scars are still numb. The tops of my ears have feeling but the lobes could be pierced without any feeling.

My mouth opening is about 2.5 - 3cm, a huge improvement from the 1cm opening pre-op.

My bite isn’t quite right - it's still tricky to bite spaghetti or salad but that's no big deal in the scheme of things.

I can just about brush the backs of my teeth.

I can eat crusty bread. And sweeties.

When I use my jaws there is always the sound of a quiet rustling, like fabric or newspaper if I tune in to it. They squeak if I eat an apple or anything that makes them work hard. But there is no longer a clunk or click when I talk or yawn.

I can sing, laugh, yawn, and talk. Oh, I can talk! By the end of the day when I'm tired my cheeks ache, as if I've been laughing too much. And I'm not sure whether others can spot it but when I'm tired I also develop a slur or lisp and my words don't come out quite so easily. If I get too excited and want to speak too quickly my brain stops me, like I’ve had a stroke and slows me so I sound like I'm drunk. Or imagine a ventriloquists dummy. Sometimes it feels as if someone has their hand stuffed up my back and is making me speak, forcing the words out, yet all the time, my mouth won't co-ordinate with it and my face feels taut and stiff.

However I look normal. I go to the shops, the bus stop, the school playground, and to people who don't know me, there is nothing untoward except a couple of scars on my neck if you look up close. Strangers would have no idea what I've had done.

I learnt the hard way that with this surgery there would be no day on day improvement. It was no good getting frustrated or trying to push progress. My consultant told me it might take six months to get my jaws working to capacity. It's still only five months. When I see him in a couple of weeks for my check up he'll be delighted with my progress. Looking back at the photos, it's clear how amazing it's been. A lot of that has been my mental attitude but staying positive has not always been easy. TMJ replacement surgery is complex and the recovery is a slow process. Patience is not one of my virtues.

We still don’t know the life expectancy of the jaws and being realistic, it's inevitable I shall have to go through the whole thing another once, twice - maybe three times in my life time. But after eighteen months of the most debilitating, all consuming TMJ pain, I am free of any. And for now, I can't tell you how good that feels.

Until another day
Bye for now
xx

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
xx

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
x

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 soufflés 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
xx