Waiting for the score - and a good bit more...
Here we are. Back in time. It is Friday, January 11, 2008, and life continues to run in slow motion.
By the time I finish this far too long diary entry I will have catapulted myself into the end of March, just two weeks ago. When the fun, fight and frustration of stage one of the battle to beat a brain tumour in a totally upbeat, laugh-a-minute fashion finally, temporarily, knocks me, my husband and a good few friends and family totally spark out.
So. Just for the record. I am still in the High Dependency section of Ward One at Bristol’s Frenchay hospital. The longest and, in many respects, whackiest weekend of my life is just on the horizon; the worst Sunday night into Monday morning of my 51-year existence has yet to come; the blackest of High Noon news days has yet to dawn.
The looniest homecoming has yet to greet me; a top consultant oncolologist has yet to meet me; the lead lined walls of Bunker Floor B at Bristol Oncology Centre have yet to engulf me and a heat resistant radiation mask has yet to be moulded for me, just so it can be bolted over my head and skull and on to a solid vice grip, every single week day, for six whole weeks, just to stop my brains from totally frying.
And all because, in my still fraught little tumour fudged mind, it is still January 11. At 7.am. Where, in Frenchay Hospital, it is still dark outside, with little or no daylight coming through the windows, where there are neither curtains nor blinds.
This memory of the dark outside is vivid because, having hardly slept a wink, despite some knock-out drops, I am chomping at the bit. Today, at lunchtime, when it will definitely be light, I will be moved to the Glen Spire Hospital in Clifton, for a bit of “posh” recovery, courtesy of my husband’s work-related-extended-to-the-Mrs, private medical cover.
That detail is virtually irrelevant for, as well as really very much liking Frenchay and all its lovely nurses - even those patrolling Check-Point Nursey as you try to escape the ward for an illicit ciggie outside - far more importantly, at 4p.m. precisely, that afternoon, brilliant neurosurgeon, Professor Hugh Coackham, is due to pitch up at the Glen Spire and tell us the score on the contents of my brain tumour.
Just a day and a bit ago, at Frenchay, the Prof had been drilling into my skull and brain to remove as much as he could of a potentially killer tumour that had sneaked up on the medics almost as fast as it sneaked up on me, sending me, by just late last December, into a stream of sudden, irrational, spasmodic, uncontrollable, totally exhausting, frightening and exceedingly untimely seizures
At 4p.m., at the Glen Spire, Prof Coakham will share with me and my hubby, John Boy, the biopsy results and implications of that troublesome little tumour, otherwise known as a glioma.
Being an optimistic kind of girl – “a get up and go kind of girl” – to be precise, if you paid any attention to my neurologist, who seemed to think that drugs and drugs alone only were the key solution to controlling the effects of a possible brain tumour “presenting” itself on scans, back in early November, as just a shadow of a thing, I can’t wait. Truly, I can’t.
The largely unforeseen and very sudden op is over and done with; we have been told it went well and now it is time to get on with normal life. No reason, whatsoever, not to.
Still a bit woozy from Wednesday’s five hour marathon operation, of which I still retain full, pain-free memories of parts of the juicy bits, when the theatre team woke me up, under anaesthetic, to test if my arms and hands still functioned, as the Prof cut into as much of the tumour as he could without slicing into the bits of my brain that control my motor neuron functions.
A microscopic drill too far - a drill I had clearly heard drilling behind me in my partially awake, very talkative state - would have left me in a state of partial or total paralysis down my right side.
None of that had happened and apart from a bit of a ham left hand, which the Prof had assured me the day before was no more than a 1% loss in mobility, which would probably rectify itself anyway, given time, I consider myself to be hunky dory, fantastically lucky, in fact. As you would.
As the morning’s nurse comes to say Good Morning and dish out my drugs and take my blood pressure and temperature, I think I hear the breakfast trolley clanking its way down to our end of the ward and notice two things.
Ruth, the girl of just 30 or so, in the bed opposite me, is no longer in it, although an empty bed is still there. Someone new is in the bed to my left, where I don’t think anyone has been before, just this side of the High Dependency section. Whoever she is, she is on a drip or two and looks like she is asleep.
I ask the nurse where Ruth is. She says she has been moved further down the ward, waiting for an ambulance to take her back to a hospital in her home town of Cheltenham. I ask the nurse how Ruth is. The nurse says she is still distressed but doing okay.
Ruth had been doing anything but okay yesterday and indeed, the day before, when we had waved drug-induced waves at each other and she had mouthed to me, in the semi darkness of a night-time ward in winter - when we were both just post-op - that she had had virtually the same operation as me.
The following day – which was only yesterday - I had discovered, in a brief and very clumsy conversation on my bouncing part, that she could neither move nor feel her right hand, nor move her head above or below straight-ahead eye vision without intense, unbearable, cry-out, tear-inducing pain. Ruth’s cubicle curtains had been drawn a lot as nurses tried to nurse her anguished fears and tears away.
I turn my attention back to the morning’s nurse who is talking to me. “Are you the one who had the partially awake brain operation?” she asks. “Yes”, I answer. “Those are very rare,” she says, as if in awe. “Are they?” I ask because I truly do not know this.
I was only told by Prof Coakham I was going to be woken up, mid-way through procedures, little more than an hour before the op. It was about the time he was telling me and John Boy my head and neck would be bolted into some kind of Frankenstein frame for the duration of the surgery.
I think this act of seemingly dark, basement-style torture had bothered me more at the time than the news I’d be woken up and asked to move my arms and hands and make circles of my fingers and thumbs.
The waking up bits had sounded quite nice to me as the Prof had described the nice bright theatre lights I’d see underneath some nice blue plastic sheeting and how warm I’d be as they would be blowing, if not hosing nice, hot, warming air over all of my body as I lay on the operating table, encased in a special reinforced nice and soft paper rug type thing.
I tell the morning nurse that the partially awake bit of the op had, in fact, been riveting for me; that I happily remember it all and proceed to tell her it all, in great detail. I finish by telling her I’d been up and walking the next day – which in fact was only yesterday.
She says yes, she knows. It is a ward, if not hospital, talking point. A feat never before known, within 24 hours of such major brain surgery. I then say I’ll be taking a shower and using the loos in there in a minute or two, after begging some extra strong tea and toast from the breakfast trolley as it is wheeled by.
She says she knows that too – the loo and shower bit. She has been on duty all night and seen me legging it to the Ladies at least four times throughout her shift.
I am glad she remembers that because I have no recollection of it. Perhaps last night’s knock-out drops worked, in part, at least.
The conversation ends by her asking me to report into Check Point Nursey – not that she calls it that – before I hot foot it to the loos and showers. I promise I will. In the end there is no need. I walk straight past the clearly signed entrance to the Ladies changing rooms, as usual, and have to be re-directed right back.
After tea and toast – still no Marmite in sight – I gather up my new bulging sponge bag and, respecting instructions not to get my hair, scalp or four-to-five-inch long, fresh skull scar wet, don my revolting white shower cap and take in the luxury of not quite jet-steaming water which spouts out close to an orange emergency, yank and pull cord.
At the changing room mirrors, I remember my recollection of the Frankenstein-style head and neck frame. How was it that I hadn’t remembered that before? Time to check out the wild-hair, fringe covered forehead.
And there it is. One small, tiny bolt-sized, single Frankenstein frame dent. Just embedded there in the top centre of my forehead, with the charming hint of a scab forming around it.
Will the dent stay or fade? I quite fancy it staying. Proof of the Frankenstein frame and big time brain surgery that went with it, because, with just a John Boy christened “finger of fudge” dressing travelling down the right side of my skull and still full-head of hair, there is little to see of that anyway.
Wrapping my flat-pack fleece dressing gown around me, sloshing on some make-up and attempting to sling up my hair – impossible due to my ham hand – I scoop up my jim-jams, towel, and sponge bag and leave the changing room.
I need to get dressed, soon as possible, so I am ready for the somewhat dramatic private ambulance that is threatening to pick me up around 12.30p.m.
Back at my little bed, I draw my cubicle curtains to do just that, only to have a nurse pop her head around them to check I am okay. I say I most definitely am and draw the curtains right back so I can get dressed in my outdoor stuff, soon as possible.
This one and only outdoor ensemble, the one I arrived in, is all black. Black thermal vest over an easy to pull-on black bra t-shirt, black knickers, a clean pair, I hasten to add; black socks, also a clean pair; a thick black boucle cowl neck crop jumper; thick black matching boucle crop V-neck cardi/jacket thing on top; black jeans and my new Christmas, black, flat, sheepskin lined Ugg boots, these a pressie from John Boy.
Thinking I must have been in a very black mood indeed when I kitted myself out in these clothes when John Boy and I left home for Frenchay in the early hours of Wednesday morning – was that really just two days ago? - I find myself not only with my smallish, for a girlie, single bag packed, completely set to go, but also with the realisation that there are at least three more hours to get through before my escape transport arrives.
And, even worse, seven more hours or so to go before 4p.m. when Prof. Coakham is due to come in and see us at the Glen Spire hospital and spill the beans on the score on the old brain tumour biopsy.
It is all too much. There is absolutely nothing for it but to leg it outside on my toddy for an illegal smoke. I grab, and shove into my jeans pocket, my pack of Malborough Lights and lighter; add my finishing touch of black – my pre-Christmas, sale-purchase, half price Beatle-esque woollen peaked cap which amazingly, comfortably and completely covers my fresh skull scar – and leg it down the ward.
Check-Point Nursey puts up no resistance whatsoever- I believe they are in despair at my antics - but tell me not to be long. I am not. It is very cold outside, but not freezing; the sky is a low, heavy, mid grey. Perhaps that forecast snow is indeed on its way. How exciting.
Two ciggies later, one straight after the other, and I am back, bizarrely embarrassed by a sudden rush of pedestrian traffic past me on the pathway outside. I buzz the security buzzer to get myself re-admitted back into the warmth of Frenchay’s Ward One.
On my way back down the ward I see Ruth, mid-way along it, on the left hand side, in bed, in a new space, with a fully dressed lady standing next to her. The lady talks for Ruth, because Ruth is again in tears. This time, I just listen.
The lady says Ruth was admitted to the ward a good while before me and our same day, same type operations, so she – the lady - had time to make friends with her before she, Ruth, went under her neurosurgeon’s knife.
It seems the lady herself is some sort of walking, talking miracle. Doctors found something like five aneurisms in her brain and she seems to be saying she has had a number of these removed. I don’t ask how. Or of details of the planned, future surgery, yet to come.
The mere mention of aneurisms spells death to me as a friend of ours – Gail T – dropped down, just about dead, from one, right out of the blue, just a few years ago, at the age of 52, as she and her husband, Paul, were getting ready to go to a wedding on a Saturday morning.
Gail was in the kitchen of their farmhouse in Congresbury and Paul, who was in the bathroom, heard her cry out. And that was it. Gail remained in a coma until her life support machine was switched off, 36 hours later. Gail - the Gail we knew as strong, always bubbly, always smiling, always lively, unbeatable in any situation - was basically gone, the moment she hit the kitchen floor.
I don’t recount any of this to the lady standing next to me. Absolutely no need. I just stand there, smiling at Ruth, saying I am moving hospitals today and wish her and her right arm and her vision the best, indeed, the very best of luck and good fortune, murmuring that time really is a great healer and we all have so much to be positive about.
Ruth’s miracle lady friend agrees and I give her a delicate hug, just in case I blow her and her multiple aneurisms over, and because I can’t hug Ruth, who is so sad and so young and so lovely looking and waiting for her husband to come in and for an ambulance to take her to another hospital too, back in Cheltenham, where she lives.
Passing Check-Point Nursey, I am given a message saying my husband, my John Boy, has rung while I was “out” – I ignore the emphasis and the euphemism encased in the “out” - and will be in at about 12.30p.m. The ambulance to take me to the Glen Spire hospital in Clifton, they say, is due just a little later…..
I stride firmly back to my bed at the end of the ward and sit on it. It is around 11.30a.m. Are clocks on permanent slow in hospital?
A nurse comes to do my “Obs” and I am reluctantly forced to remove some of my ready-to-go outer clothes and indeed, my black cap, while she does this, but put them straight back on again afterwards, thinking this will help the time move on until 12.30p.m. and John Boy’s arrival and my imminent departure.
One of the nice catering staff comes round asking me if I’d like to select my lunch option. I decline, saying I’m leaving before lunchtime, because, as far as I am concerned, I am. Just to move the day onwards and forward towards 4p.m. and our meeting with Prof Coakham and my tumour biopsy results.
I take a peak at the new lady in the bed to the left of mine, who is now fully awake, and ask if she’s okay to chat. She smiles back and says she is. I am ecstatic and pull up a chair to do so.
We talk about what is wrong with us. She is called Pam and is business manager for a school in Bristol’s Clifton. Not so long ago, when her eyesight got a bit dodgy, she made an appointment with her optician to have her eyes tested. Next thing, she was seeing a neurosurgeon at Frenchay. It turns out she had a tumour resting on her pituititory gland, distorting her vision, in the process. That tumour has just been removed.
Pam is exceedingly cheery – a cheeriness that is so, so welcome. We both agree that positive thinking is the best and only way out of this temporary, very deep hole life has suddenly thrown in our way.
We exchange names on pieces of paper – Pam writing hers and her email address in the mimsicule 2008 diary I keep in my handbag - spongebag at the moment - only for the purpose of having friends’ telephone and mobile numbers in it, because, otherwise, I would not have a clue what they are.
All numbers seem to be keyed in to phones these days – mobiles or landlines - to such an extent that I don’t even know my mother’ home number, nor my hubby’s work numbers or mobile number, off the top of my head – let alone my own mobile number. This was the score long before my brain tumour reared its head and no doubt will remain the score for ever more.
Pam’s husband arrives, just before mine does. We swap pleasantries and introductions and I move from the chair by Pam’s bed to sit on the end of my bed.
John Boy asks me what I’m doing dressed in my outdoor clothes and Ugg boots and out of bed. I say, quite obviously, that I’m waiting for him and the ambulance.
The Boy says he’s here but the ambulance isn’t yet and may be delayed and perhaps I should get back into bed? I say no way and ask him to take me out for a ciggie as I can’t stand the wait. John Boy kisses me and sighs. The kind of long, deep, not quite-resigned sigh that signals big trouble ahead for me.
With John Boy at my side, cigs in my back pocket, my Ugg boots on and black cap on my head, we head down the ward, once again. I smile at everyone I see, including all nurses manning Check-Point Nursey. I get a lot of smiles back.
Outside the sky is greyer and lower than ever. John Boy has my gloves in his jacket pocket and hands them to me, helping to put them on. He tells me lots of lovely stories about phone calls from friends and family and emails he has sent and replies he has had. We laugh. I have two smokes in a row and John Boy huffs and puffs as I do so. Too many people around he says. You just can’t do this. For once I agree and we head back inside.
At Check-Point Nursey I have a sudden brain-wave. A shock in itself. I stop and ask if there is any way my drugs could be unlocked from their locker and put out ready for me as my transport is due any minute to take me to the Glen Spire and I would really hate for the ambulance to be kept waiting.
I say this, much to John Boy’s embarrassment, because every time we have tried to leave hospital before – twice in the last couple of months, including after Christmas - our departure has been held up while medics and nurses scramble to sort my battery of drugs or send me off, or keep me in, for last minute brain scans.
We are assured none of this will happen today but maybe I should in fact eat something as the ambulance to take me to the Glen Spire is now unlikely to get here until at least 2.30p.m. I also need more “Obs” doing before then.
Laughing and smiling, nurse Nicky arrives at my bed to do just that and off comes my top outdoor gear stuff once again as she does so. Nicky tells me the choice of food is now down to a sandwich. I say that is fine, lovely in fact and thank you. It is cheese, the bread a bit curly at the edges but that is neither here not there. With my black cap on, ready for the off, I eat it, even though I am not hungry. Anything to pass the time. Which is now 2.15p.m.
Through the ward windows, the light outside is now virtually non-existent. I remember that good friend, Lizzie Frith, who started a three month contract as a recruitment consultant at Frenchay just this Monday - two days before my Wednesday op – was again due to pop in, if she could, during her lunch break. She had done yesterday and it had cheered my day, amazingly.
Now, I want the clock to stop. I don’t want the ambulance to arrive before Lizzie does. I want to see her. A bit of sanity in this crazy, hospital world of mine and My Boy’s.
And there she is. Lizzie charging down the ward, apologising for being late, saying she’d been held up and didn’t know if she’d catch me/us or not. She did and she has. And, as usual she looks lovely. Tall, blonde and glam.
She stops in her tracks in front of me. “What are you doing?” she asks. “Standing up, out of bed, all dressed up like that and looking amazing?” I ignore the amazing and say I am waiting to go to the Glen Spire, as I have been since 7a.m. that morning.
Lizzie and John Boy exchange glances. I don’t need to look to clock the incredulity in their faces and with it, the “she’s bonkers” I can just hear running, simultaneously through each of their heads. Lizzie hugs me, delicately. I bear hug her back.
Lizzie says: “You’ve been out having a cig again, haven’t you,”
It is not a question but a statement of fact, gleaned by smell, and I have no time to admit to the four I have in reality already had, on the quiet, so far that day, because, joy of joys, it seems the ambulance has arrived, as two very smart and serious looking uniformed ambulance men are coming up the ward, wheeling a proper ambulance type stretcher bed.
John Boy groans. “Can you at least sit on the bed and look ill, “he instructs, under his breath, “This is so embarrassing.” Lizzie backs him up and I reluctantly plonk myself and my grinning face on the bed, temporarily.
As I do, I turn to check my zipped up bag is still there, behind me, ready to be zipped off to the Glen Spire by John Boy. I look up see snow flakes falling outside. I do a double take. But yes, those are snow flakes. Not hail. Not sleet. Real snow. I smile some more and point at the window like a child.
John Boy and Lizzie smile back, convinced they are dealing with a total nutter.
The ambulance men park the stretcher jobbie right by my bed. John Boy is aghast as I leap off the bed and say I don’t think I need the stretcher. I walked into this ward and intend to walk out of it. John Boy explains to the bemused, uniformed duo that looks are deceptive and I have indeed only very recently had major brain surgery and am, in fact, deluding myself that I haven’t.
The ambulance men seem to have heard it all before and suggest that although I may want to walk out and into the waiting ambulance, it may just be best if I take the easy option of the stretcher which will be far more comfy, not to mention safe, on my journey into Clifton, given that it is snowing outside and that the snow seems to be sticking.
To John’s delight, I concede defeat and hop onto the stretcher affair, to find a blanket being tucked all around me, with straps belted on top. What drama, I think.
We then start an excruciatingly embarrassing wheel rumble down Ward One, where I apologetically wave goodbye to nurses and patients as we pass them. I note surprise on some faces as they smile and wave back as they have only ever seen me on a stretcher twice – the first time when I was wheeled, wide awake, into theatre and the second time when I was wheeled out of theatre and the recovery room, also wide awake.
Outside it is grey. The sky is heavy with snow which is falling like a big soft blanket. John is alongside me. His car is parked, probably illegally, with hazard lights on, at the side of the block that is Ward One. He has my hospital bag; the ambulance men have my bag of drugs and I have my snow, which is falling, softly and thickly, all around us.
I am hoisted up into the ambulance and more straps are strapped around me. The ambulance man, in the back with me, is charming, polite and tells me to tell him if I feel any discomfort at all on the journey. I don’t. For once, I can hardly talk as I just want to watch snow as it falls outside the ambulance windows.
With John Boy following us by car, the journey from Frenchay into Clifton is surreal, a real-life Christmas card. By the time we reach the Victoria Rooms end of Whiteladies Road, you can see that cars parked in rare front-of-office parking slots are well and truly dusted, if not covered in snow.
We pass my former company’s offices at No.36 Whiteladies Road and I see the balcony there that used to lead of OutRight PR’s first floor kitchen. It is covered in snow. If the OutRighters were all still there, the French doors would be open, the Cava out of the fridge and popped open, all of us standing there, slurping “pop” in the middle of the afternoon, cheering on the snow.
At the top of Blackboy Hill, as we turn into the Glen Spire, there is so much snow that every single car I see in every single parking slot in the hospital grounds, is covered in the stuff. Glory, glory.
My in-vehicle ambulance straps are un-strapped and I am lowered out, down to ground level, snow snowing all around me and my flat black cap. Wheeled into the Glen Spire - where I had my first MRI scans done back on October 29th last year and where we met the amazing Prof. Coakham for the first time, on just December 21st - I am suddenly concerned I can’t see John Boy.
The ambulance men wheel me and my stretcher to the lift – how I hate lifts, claustrophobia and all that – and next thing we’re on floor three, turning right and heading for Room 307 along the corridor. And there I see John Boy. Standing, if not, indeed, saluting, just outside the room.
“Hello,” he says, “My name’s John and I’m your husband, here to be at your service throughout the whole of your short stay here in the Glen Spire.”
We giggle like the silly kids we are and always will be.
Inside Room 307 my now two bags are already lined up – courtesy of John Boy, who has brought along a second, smaller one, according to my hopefully, un-barked instructions; there are already flowers in the room; cards too. A small but fabulously private, en-suite shower room leads off the room too. And windows, with real, working, horizontal blinds are adjacent to the bed.
The ambulance men hang around, wondering if I need help in being lifted onto the bed. “Absolutely not,” I say, and simply ask them to un-strap me. They do and we thank and wave them goodbye.
Time for a proper nose around and unpack, I tell John Boy, who simply sits on the bed looking exhausted. A thought crosses my mind. Has this whole thing taken more out of him than I think? I think the answer is yes.