Keeping your sense of tumour

Pat Daniells....blog footnote by her husband John Hutson or John Boy.

Pat died peacefully in Weston Hospice in Uphill on August 23 after a courageous and spirited battle with her brain cancer.

She started writing the blog after having major brain surgery and, as with everything she tackled, threw herself into it 200 per cent as it represented a terrific displacement activity to stop her thinking about her illness.

I didn’t want to do anything to discourage her doing whatever made her feel better, but did explain over and over again that a blog was an online diary which could be updated every day or every week or however often she wanted. Pat, I believe, approached it as the novel she had always intended to write – but sadly now never will.

When it first appeared the blog attracted interest from around the world. Friends in America started prayer circles for her and I had emails from New Zealand, Australia, Canada and Europe marvelling at this woman, her spirit and honesty and attention to detail.

Just writing this has caused me – for the first time today – to break out in tears again for the loss of my soulmate and the cruel way cancer destroyed her independence.

After the operation Pat embarked on a six-week course of radiotherapy at Bristol Oncology Centre. I took her Mondays and Fridays (as I was working in Surrey at the time) and a bevy of dear friends (and some near strangers) drove her in and out for this unpleasant ordeal.

Pat was also started on chemotherapy using a trial drug which worldwide medical opinion saw as gold standard following surgery to remove as much tumour as possible. The aim being for the radiotherapy to burn any spots of tumour remaining and for the chemo to poison the rest.

Trouble was the chemo triggered some kind of allergy in Pat and ended up almost killing her and had to be stopped early. I will not bore you with technical details, but Pat kept getting seriously and dangerously anaemic. Her body was eating red cells faster than it could produce them and her HB levels kept plummeting and she had to be rushed into hospital for emergency blood transfusions.

By this time my employers were happy for me to be working out of their Bristol office which I did so that I was never more than 30 minutes away should I be needed. Through this time we had the support of a crack medical team – Dr. Kirsten Hopkins (Pat’s oncology consultant), Pat’s brilliant GP Dr. John Jackson who was with her from day one when the first seizure happened and they were joined by consultant haemotologist Dr. Edwin Massey.

Edwin was a very senior guy in the department in Bristol, but took an active and amazingly personal interest in Pat’s auto anaemia. Nothing like it had been seen before and Pat was the only person on the trial chemo drug to have had an allergic reaction to it. Always unique – that was Pat.

Two or three times a week blood samples were taken from Pat and the results phoned through and whenever things got bad – which they did many times – I took Pat back into hospital for blood transfusions to restore her red cell count. Trouble was, the cross matching of bloods became more and more difficult. The danger was that Pat would become dependant on blood transfusions and her body would become lazy in the production of its own red cells.

When we wanted a much-needed break with friends in Bournemouth, Edwin arranged for Pat to have enough units of blood to stoke up her system. We were so excited at the prospect of a few days away from this nightmare that we were singing along to David Bowie and “Rebel Rebel” and I failed to notice the speed limit had dropped from 40 mph to 30 mph and I got zapped by a speed camera... but we didn’t care.

Edwin had put in place home visits to Bournemouth for blood samples and he personally phoned back the results and had set up the facility to have transplants locally if required. Luckily they were not.

It got to the stage where the removal of her spleen was being considered as a way of stopping the red blood cell slaughter in Pat’s body. Pat was nothing if not a fighter and how we cheered when her HB levels started improving and holding.

She was in remission, but every three months we had to go back to Frenchay Hospital for the all-important MRI brain scans to monitor the tumour site. Pat was claustrophobic and I had to sit in the scanner room holding her foot so she knew I was there.

Pat showed such bravery that just thinking about it has reduced me, for the second time today, to tears. Grief is a funny thing... it comes in waves when you least expect it. It was a time-bomb in her head waiting to go off.

Usually three or four days later we would drive into Clifton to see Kirsten and get the results. We would have some idle chitchat and wait for Kirsten to tell us the result... the best result being that the scan showed that the tumour area was the same as the last scan. The relief each time she told us this was fantastic... we would head into Clifton Village where Pat would buy yet another pair of boots and we would go to our favourite restaurant, Pizza Provincale, in Regent Street for a bottle of house white and tuck into a huge Four Seasons pizza.

By this time most of Pat’s hair had returned except for the area where the operation had been... due to the chemo drug and, if I remember correctly, the radiotherapy. Pat had two or three glamorous wigs which she wore, but grew to hate. In later months she got her hairdresser Dan at Broad Street in Winscombe to bleach her hair and cut it in a punk style so she looked like Annie Lennox.

We dubbed ourselves Team Hutson and battled on, but everytime we thought things couldn’t get any worse, they did. With the financial recession biting and worries about keeping up profits for shareholder value, the financial services company I worked for decided to make me redundant... just in time for Christmas. I wasn’t alone... they wanted to take £50million of overhead out of the business to set against a record year of profit.

To me this seemed like fate giving us the chance to be together. Being redundant brought some financial compensation, we would clear out our rented flat in the Surrey Hills and I could be with Pat and look for a lesser paid job in the West Country. We had both enjoyed high profile jobs on the national public relations stage and perhaps it was time for a rest.

Pat had run an amazingly successful PR agency called OutRight PR and the walls of our home are covered by awards which she – and often us together – had been awarded. After 15 years at the helm Pat retired... never starting the book she planned. She did some strategic consultancy work from time to time and when the illness first revealed itself when I found her unconscious on the bedroom floor back in October 2007 she was working as Campaigns Manager for John Penrose MP.

John was so supportive I cannot praise him enough... a hard-working decent MP who showed such compassion for our situation. Pat had to resign the job... although not before running a highly effective campaign which got national and regional coverage.

Come February of this year the MRI scan was again, as far as anyone could tell, clear. Given that my work provided worldwide travel policy was in place until the end of my notice period in late March I asked Kirsten if she thought it was OK for me to take Pat on a long haul flight. It was OK.

Pat wanted guaranteed sun and a lazy time in a resort without screaming kids. So we had a final holiday in March... 10 glorious days in sun-kissed Barbados. Before we went our old Radio Bristol mate Keith Warmington played Typically Tropical’s Seventies hit “Barbados” for us. We went from the flat in Surrey (which we emptied on our return) and Roger Day (another old mate) played us the same record on BBC Southern Counties radio.

It was a lovely holiday... Pat was often tired, but the two songs which made us laugh and became the abiding memory of our time on the island were “Island in the Sun” and “Little Old Wine Drinker Me”... a new friend we met there was Bill Clutterbuck, after alcohol was taken he liked to sing and he serenaded us with these songs daily, much to the amused joy of Pat and I and Bill’s lovely wife Sue. We made other firm friends out there too.

When we were picked up from the airport to go home Pat experienced an aura... the feeling she had when a seizure might happen. She didn’t mention it at the time, but it later became clear that something was happening in the tumour area although the next scan was not clear-cut, but the area was slightly darker.

We carried on living a pleasant enough existence... trips to Wells and Clevedon for the markets and for coffees or meals.

Then on May 1, it happened. Pat screamed for help and said a seizure was on the way. Her frightened screams still haunt me in the flashbacks which happen from time to time. I put her in the recovery position and dialled 999. Once again she was whisked into hospital and Dr. Ian Ormorod and his team experimented with a cocktail of drugs to try to stabilise Pat and prevent the seizures she so feared.

Eventually she came home and we abandoned all prospects of me seeking employment as Pat couldn’t be left at home and needed me as her full-time carer. This wasn’t easy for Pat... now definitely not going to be able to drive again... one of the most independent women I have ever met having to rely on A MAN!!!! She decided we had to commission a whole range of projects to keep me out of the house... I was to take up gardening and she ordered a greenhouse the size of the O2 Arena (well almost) from Banwell Garden Centre, an accompanying potting shed, a pergola and our friend Colin Leppard and I were to put in a wildlife pond, wildflower meadow , a horseshoe of English trees and a butterfly haven.

Spring was turning into summer and I think now that Pat knew her time was short although neither of us foresaw how short it would be. Ever-generous, Pat bought me a convertible Saab as an early birthday present – my birthday being on 11 September – off our friends Phil and Joan who had been offered a paltry sum on trade-in so let us have it for that.

This meant that the monthly trips to Frenchay could be done with the roof down and even in traffic we could top up our tans. Life returned to a kind of normality, although Pat increasingly slept in for longer in the mornings and in the evenings tried to cram in as much socialising as she could manage. Friends came to stay and we had enjoyable times with much food and laughter which we hoped would last all summer long. Each morning after her breakfast I would sit as Pat took a bath and carefully put out her evening and morning cocktail of tablets... her Drugs Bunny.

Come July Pat was getting very excited about attending a Conservative garden party event where ladies would wear posh frocks and hats and I was to be her guest. The day before the event, 17^th July, I took Pat to have her hair done again by Dan, her legs to be waxed by Sue Gale at the Webbington. We were going to watch a film, but after I had made dinner Pat went to bed with a cup of tea and a book. I promised to return with more tea in 30 minutes and went to check emails.

As I switched on this computer blood curdling screams reached me from two floors up and I rushed up to our bedroom as a seizure set in. Dialling 999 and trying to comfort Pat with the other hand... this time the ambulance took her to Weston Hospital. Pat only had to endure the weekend in there and I will say no more, except that if I never have to set foot in there again it will be too soon.

The ambulance took Pat to the neurology ward at Frenchay Hospital. More scans were done and it became clear the tumour was back BIG TIME. Aggressive and in areas where surgery would cause permanent disability. Radiotherapy a second time was out of the question and chemo would probably ruin any quality of life that was left.

Pat wanted to know how long she had left and took the news that she would not survive until Christmas with a calmness I could not imagine. Every day for me became a Groundhog day... early morning spent answering calls from worried relatives and friends, organising visitors, collecting together whatever it was Pat wanted by way of clothes and fruit and of course cigarettes. Driving to Frenchay for a six to eight hour visit.

The idea was that Dr. Ormorod and his team would try a variety of anti seizure and anti sickness drugs to stabilise Pat with view to her returning home. Unfortunately her condition worsened on a daily basis and she was losing mobility in her left arm, left leg and facial muscles.

When they had in fact ensured that Pat was seizure free it became clear that returning home – given Pat couldn’t climb stairs – was not going to be possible and instead Pat went by ambulance to Weston Hospicecare’s Jackson Barstow House in Uphill.

Initially we thought this would be an interim visit. Pat had always said she wanted to end her life there and not at home. From the moment she arrived there she just loved the place... the caring staff, the lovely building, well equipped rooms and beautiful, tranquil gardens and facilities were a world away from the Second World War Nissan huts of Frenchay.

My groundhog days continued, although this time Pat kept me running after her clothes and bringing in endless changes of designer clothing. How very different from hospitals though.

My job was also to keep Pat laughing every day and I don’t think the hospice staff knew what had hit them as she roared with laughter and enjoyed a stellar cast of visitors. The medical director Dr. Julian Abel introduced himself, and thinking his name was spelt “able” Pat said “Dr. Able, well I hope you are” and collapsed into fits of laughter. Always on hand was Dr. Helen Hogan.

Such was the madcap antics in the room for the majority of Pat’s time there that on the sign outside saying Pat’s Room I added “Warning: May contain nuts.”

Again though, it became abundantly clear that the tumour was moving aggressively and fast. Before long Pat could not walk to the wheelchair, but had to be lifted. She became a regular sight on the cctv camera monitor in the nursing station holding court in the smoking shelter which is known as the bus shelter. She would sip pop or wine and have the ciggies she so loved.

Always able to somehow commandeer people to undertake her tasks, she even managed to persuade the hospice chaplain Karen Murphy to wheel her outside for a smoke. I had been dispatched for more leggings and she wasn’t about to wait. Another time she dispatched the nursing director to fetch her and John Penrose a glass of wine each as she sat in the smoking shelter.

Pat became obsessed with the details of her funeral, what she wanted to wear in her wicker coffin, what music should be played at the funeral and at the event at our house afterwards. She even got the nurses to write it all down... her final wish being that I did not become a “miserable old goat” and had to have fun after she died.

Somehow she managed a whole week of swallowing copious quantities of crushed tablets in strawberry yoghurt. We joked constantly about the hospice being her version of The Apprentice... ie when God voted her out we would be able to review her “best hospice moments” and believe me, there were many. So many friends took the time to come and spend quality time talking and laughing with us. I do not want to list them because they know who they are and I don’t want to miss anyone out by mistake.

On the plus side we were able to say our goodbyes and tell each other how much we loved each other. The hardest time for me was the final three days when Pat was just asleep and I told her gossip and joked and read bits.

The day before, she was slipping in and out of sleep. As I announced the day’s starry array of visitors she muttered “Green and yellow cardigan and blue leggings”. As the day progressed and we told some of the funny stories about her “hospice highlights” she sniggered and laughed and sometimes joined in. That evening my daughter Amy came in to tell Pat her excellent AS results and that she wanted to follow us into PR. Pat was so pleased and told us to ring her mum with the results. The fact that that was her last conscious memory is very special to me and now I am fighting back the tears yet again.

My son Tom came in the next day and, as Pat slept, told her he loved her. Amy came in later too for a while and we laughed and joked.

The hospice had promised Pat a pain and seizure-free death in her sleep. Pat said she couldn’t do it without me and on Sunday August 23 the nursing staff said they felt Pat’s end was near and that I should stay. I told Pat (and I hope she could hear me as they say that is the last sense to go) that I was indeed having a sleepover in the armchair next to her and that we were going to have mindless TV and I was going to drink all the wine she had left in the fridge.

She slipped away quietly and peacefully. The lovely, caring staff changed Pat into all the clothes she had itemised. Her spirit had already left and gone to heaven and I kissed her goodbye for the final time.

Pat’s favourite description of herself was coined by a client at Nuclear Electric who described her as a cross between Attila the Hun and Mary Poppins.

When Pat and I first became an item she warned me that things tended to happen when she was around. And she wasn’t wrong. Being married to a hurricane was an interesting experience, but boy did we have some adventures.

Finally, shortly after her admission to Weston Hospicecare Dr. Abel asked Pat how she found things there. “I feel as if I am in heaven Dr. A-b-e-l.”

Everything about the hospice is amazing. Despite costing nearly £3million a year to run, less than 20 per cent of the budget comes from the NHS. Any more and no doubt they would set meaningless targets which would ruin everything.

So if you have been touched in any way by Pat’s story (more tears) please consider making a donation to Weston Hospicecare in her memory.

In the New Year, with the help of the Weston Mercury, and Pat’s friends I hope to run a fashion show to celebrate Pat’s life and style... she loved her clothes and had agreed to my idea of using her enormous collection of designer clothes and footwear for an event where they could be sold off to raise funds for Weston Hospicecare.

Pat was a Governor at Churchill School – only getting me to resign her position whilst in the hospice. I had a lovely letter from Dr. Barry Wratten which I believe says it all about Pat and I hope he will forgive me for quoting the last paragraph.

“Pat has taught us all about the realities of determination and optimism. I will miss her iconoclastic approach, her straight-forward and challenging demeanour and her sheer enjoyment in all she did. Her enthusiasm for life was priceless and she faced its loss with characteristic wit and self-deprecation.”

John Hutson, September 8, 2009.

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 29^th last year and where we met the amazing Prof. Coakham for the first time, on just December 21^st - 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.

Post major brain surgery for truculent tumour: Fun and Frolics at Frenchay Hospital in Bristol

It is 7a.m. on Thursday morning, January 10, 2008. I am awake and starving hungry. I am in the High Dependency section of Ward One at Frenchay Hospital in Bristol, 14 hours on from being wheeled out of theatre after five hours of major surgery to remove a fast growing tumour in my brain that was not so slowly trying to kill me.

Just two and a bit short months ago, it – the potentially killer tumour – was supposed to have been a nicely containable small one. I’d taken to calling it, with derision and a fair degree of hate and humour, my “bog standard brain tumour”.

A nurse is by my side, smiling, saying good morning and would I like an all-over wash, right there in the hospital bed? I have no idea. Would I? I say I think I’d rather have a shower, taking full advantage of the new and bursting to the brim sponge bag I’d bought not so very long ago, especially for such occasions, but she tells me that’s not such a good idea right now.

I wonder why, then see the drip attached to my arm. The smiley nurse reminds me it is delivering neat morphine to me, if I should need it, simply by me pressing the button that seems glued to my left hand. But that it will be disconnected later that morning. She then asks if I’d mind if she took my blood pressure before the bed wash? I say not all and remember I’ve been having my blood pressure and temperature taken – and goodness knows what else - at two hourly intervals throughout the night.

I discard to a plastic bag, temporary wash-bin, my first pair of £5 Matalan jim-jams which someone must have put me in last night and which I notice are now very sweaty indeed, not to mention stinky, and subject myself to the bed wash, behind closed cubicle curtains. It is remarkably refreshing but I make a mental note to have a shower tomorrow morning, if not just a little bit later today - far more civilised and private.

It will also mean I can do my make-up. And look at what I am assured, by John Boy, is, remarkably, no more than a “finger of fudge” sized dressing, lost and almost invisible in my mop of still-there hair. Essential, vanity things to do, when you are a girlie of 51, stuck in the mindset of a 31-year-old, with a new scar, neat and very narrow, stapled up by metal stitches, running down the right side of your head, just down to your ear, holding together a skull taken partially apart by a wonderful neurosurgeon to invade raw brain tissue to excavate a bit of a tricky brain tumour that had been causing havoc with my life.

With the cubicle curtains still closed and the rest of the ward closed off to me and out of sight, I realise what I also need is a pee. Urgently. A bed pan is offered but I again have a flash back to last night, just after theatre, when the same thing was offered and I’d rejected it then – some ridiculous recycled and seemingly highly unstable cardboard contraption - as impossible to use, half perching, half lying on a hospital bed, and opted for a wheel-in, wheel-out bedside commode instead, having been told such things were available.

What I’d really wanted, back then, was to leg it down the ward to find and use a proper, stable and fully plumbed–in china loo, knowing that such things existed in hospitals, but was told, in no uncertain terms, that was not on, so soon after major brain surgery.

With much consternation from nurses, a bedside commode had been wheeled in for me and I’d hauled myself and my drips out of bed to use it. Just putting my feet on the hospital floor as I made the three-step journey had felt like heaven and freedom.

I recount this little tale to the morning’s smiley nurse, who says, “Well done you”, but also rejects the notion of me stepping down the ward to use a proper loo, using the morphine drip attachment as some kind of excuse. A bedside commode is duly wheeled in and, fully conscious this time round, I give not a hoot that smiley nursey is just behind the curtains as I have my pee in relative private. She explains she is on curtain duty just in case I fall. As falling anywhere is the last thing on my mind, I accept my lot. For the moment.

Breakfast is mentioned and, with hunger pangs now on red alert, I get temporarily very excited before considering that what I really want is strawberry pavlova. My hubby John Boy and I had been out for a last, fabulous, pre-op roast and all the trimmings dinner at Penny and Phillip Bond’s back at home on Sunday night.

Fellow friends Janet and Richard Price had bought one of the puds – a stonking home-made pavlova which Janet is renowned for – and I just knew there would still be some left in Penny’s fridge. There had been when we left the dinner party.

While the breakfast trolley is wheeled up to my bed, together with my morning’s allocation of drugs, which include the steroids I have been on since Christmas Day and which seem to account for my current, unaccountable sweet-tooth, I see a load of toast and nicely ask for some. Disappointment descends as I am advised there is no marmite. Not even those useless little ten pence sized catering jobbies they seem to dole out with toast all over the place these days.

A glass of water comes with and for the drugs, plus a cup of very strong tea, as requested. I scoff down the toast, swig down the drugs with the water and sling down the tea, virtually in one. The tea, in its little green cup and saucer, is gone, finished, just as the breakfast trolley, together with the lovely lady serving things from it, troll off back down the ward together.

Still hankering after Janet Price’s strawberry pavlova, which I am convinced is still lurking in Penny Bond’s fridge, and more tea, which I don’t ask for in case it is rude to, I then ask if I can have or use a telephone. I need to ring John Boy and get him round to the Bond’s house before they leave for work, but there doesn’t seem to be one of those pay-as-you-go phone contraptions, usually combined with a telly, next to my little bed at my little end of the ward.

I never even consider the reality that there is not a scandalously expensive to use, combi-phone and TV by me, because I am in the high dependency section of the ward. And not expected to be able to use one, never mind ask for one.

A phone arrives from somewhere and, like ET on his first visit to planet earth, I ring home. I am astounded and extremely disconcerted to hear my own voice on the answer machine. Has John Boy had the answer machine switched on all night while anything could have happened to a newly brain drilled me, twenty five or so miles away from home?

I leave a message saying so, in no uncertain terms, followed by an absolute demand that he gets himself out of bed, where I unfairly imagine him to be - and where I am not but wish I was - and up to Phil and Penny’s to raid their fridge for the left over pavlova and bring it over to me, in Frenchay hospital, instantly. Together with a big flask of tea, complaining there is absolutely none on the ward at all. And, if he can’t find a flask – I cannot recall precisely at that moment if we even have one still intact – to borrow one from Penny and Phil, who I am convinced will have.

The phone must have been taken away from me, probably because, as I later learn, the ward sister is herself ringing John Boy, who answers the phone straight away. He was not in bed but in the shower, having had phone calls since goodness knows what hour of the morning as well as about ten thousand late into the night before.

Still dripping from his morning shower, John Boy had already got my morphine ranting message and rung the Bond’s to request the left-over pavlova and been told, very kindly, that today was Thursday, the dinner party had been on Sunday and the rest of the pavolova in their fridge had been long gone since Monday night. Penny had said she would sort something interim out, after work, for his visit to me that evening.

During his phone call from the ward, John Boy was also assured he did not have to worry about tea – or flasks of the stuff – for me, because the ward and indeed, the hospital as a whole, had lots of its own. They advised him to come in at lunchtime and not before, so I could get some sleep. While they weaned me off the morphine. Neurosurgeon, Prof Hugh Coakham, would be in to see us both, they told him, at about 1.30p.m.

The Boy, intent on going to work in Bristol that morning to keep himself marginally sane, but having originally planned to have gone in late via a largely over-long and circular route from North Somerset to Frenchay and then back into the city centre, had said he’d be in at 1p.m.

Back in my bed on Ward One at Frenchay it is only something like 8.35 a.m. and although fed, clean and fresh in my next and latest pair of £5 Matalan jim-jams, I am bored and still hooked up to the morphine drip. And still desperate for pavlova.

I want to get out of bed and walk and have a horrible feeling the morphine drip is being used to contain me but am assured it will be taken out soon. Following a change of shift in nursing staff, I have a message back from a new smiley nurse telling me my John Boy will be in at lunchtime and Prof Coakham just a little later, while The Boy is here. I calculate I have four hours to fill. Not a thought to relish but at least a thought and a minor calculation my scalpel and drill-invaded brain can still make.

I wave and smile again at the girl in the bed opposite me. She mouths she has had virtually the same operation as me but then, like last night, which I recall so vividly now, when we waved to each other, post operation, like strangers in the half dark, she starts crying. This girl, who is called Ruth, must be 20 years younger then me, and I wonder what the heck she can be doing with a brain tumour and why she seems unable to move her right arm at all. Caring nurses go to her and curtains are pulled around her.

In the relatively short time I have been told I have a brain tumour – a glioma - I have read, by chance, two major feature stories in the Sunday papers about young children with similar conditions. In both instances, advanced and very aggressive tumours. Their stories, and those of their parents, were not just valiant but heartbreaking. Full of hope, fight and determination for young lives caught out by a strange and abnormal growth of, in their cases, cancer forming brain cells for which there is, as yet, no medical or scientific reason or explanation.

It is bad enough to have a tumour in your brain in your fifties. In your thirties – as Ruth surely is – it must be intolerable. When you have yet to reach the age of ten, with your whole life ahead of you, it must be impossible. I wonder how parents of these little young people retain their strength and their sanity and an ability to keep upbeat and positive, along with their children.

Reflecting on this impossible dilemma, it is the first and only time so far that I equate brain tumours with cancer, in relation to me. I put the thought straight out of my mind. Never to be considered again.

As far as I and my neurologist are concerned, my little tumour, pre-op, kicked off as a low grade, slow growing glioma – grade one or possibly grade two.

According to the brilliant website, www.cancerbackup, a grade one glioma, which I have obviously mentally bracketed myself into, as no-one has yet told me conclusively – or, indeed, to the contrary - registers on the cancer rictar scale as the “least malignant” of all. Only grade four goes off the scale as the “most malignant.” Meaning, the most cancerous.

These runaway little thoughts of mine make me suddenly very tired and me and my morphine drip turn over for a little kip. Next thing I know there’s another charming nurse there at my bedside, wanting to do my two-hourly Holby City style “Obs”. I say yes, thank you, and can you take out the morphine drip too, please, at the same time. The nurse says that will be in about half an hour.

I look over to Ruth in the bed opposite, who is not even smiling between tears now. I burrow down in my hospital issue sheet and blanket, so Ruth doesn’t have to see me looking at her, only because she is, after all, straight in front of me, but, mostly, so I avoid, inadvertently, looking directly at her, adding to her clearly abject misery and distress. In doing so, I snooze for half an hour or so.

It is 11a.m. and a nurse arrives to unhook me from the morphine. This is freedom time. No longer chained to a drip. I am ecstatic. I say I’m heading down the ward to find the loos there and the nurse beside me obviously thinks I’m mental.

But I’m asking her if she’d mind pulling out the bag, behind and to the right of me, in the locker, so I can get out my sponge bag and my flat-pack black fleece dressing gown – not the big bear fluffy fleece number that has featured so prominently in my and My Boy’s tumour-induced seizure and hospital dramas to date – and reach over myself to the left hand side to grab my tall black sheepskin Ugg boots, a Christmas pressie from John Boy, tucked, as they lovingly are, under the chair there.

The boots are on my feet faster than she can say “no”. I am in the flat-pack fleece dressing gown, sponge bag in my hand and I am on my feet and heading down the ward.

I pass the nurses station, which I clearly haven’t really seen before from my end of the ward and, unaware that the nurse who unhooked me from the morphine is hot on my tail, just about right behind me in fact, get stopped and asked where I’m going. I say, “The toilet”. They say, “It’s back behind you.”

With my sense of direction – pretty poor at the best of times and currently completely flipped, it is a conversation that will be repeated umpteen times in the next 28 hours before I am moved to a different “posh recovery” hospital, under John Boy’s work related private medical insurance cover for me.

The morphine disconnecting nurse is back at my side again and insists on coming with me. And on me keeping the loo door just partially open, showing me the fast-pull dangling orange cord emergency alarm thing in there. I am quite happy with this and with the loo I find in there. It is a real one. Not on wheels. How wonderful. I come out, wash my hands and say I just want to clean my face and put on some make-up and shove my hair up and she shows me yet another handy orange cord jobbie to pull if needed before going to stand guard, only just outside what I’ve decided to call the washroom.

I check out the hair in the mirror above the wash basins. Disaster. It is half flattened and crazy and wild as anything. The “finger of fudge”dressing on the surgery section of my skull is exactly as John Boy described it. A “finger of fudge”. Hardly visible in between the hair. Remarkable. Thank you, Prof Coakham.

The face is another matter, but that has nothing to do with the Prof. It’s the face I was in before I came into hospital. And it looks pretty worn out. Distorted too, a bit, by hamster cheeks and jowls caused by the steroids I’ve been pumping into my body twice a day in accordance with doctor’s orders, since Christmas Day.

Conscious of the time the charming morphine disconnecting nurse is having to stand ‘on guard’, I freshen up, clean my teeth, slap on some make up, gingerly trawl a brush though my hair and then try to shove it up. I have one of those big tooth LisaClip things – dead easy to use to hold up the most unruly of hair – but all I can do is get a clump of it up at the back and instead of clipping it all firmly in the middle, clip it to the left side instead. Three attempts later and the result is just the same. My left hand is a bit odd. Or maybe my brain is. No bother. Time for me and my sponge bag to go.

I am escorted back to my bed but only really want to sit on it, not get in it. Only an hour and a half now to go till John Boy arrives. I decide to go and talk to Ruth, in the bed opposite. Who is not crying at the moment. But smiling at me.

I introduce myself properly and, like some kind of idiot, I later realise, try and shake her hand. My right hand to her right hand. As you do. Ruth starts to cry. She says it is her right hand that is making her cry. She has no feeling in it and cannot move it. I woffle on about a bit of numbness in my left hand which I have only just clocked, in the washroom place, and realise I am saying totally the wrong thing, so shut up.

Ruth, who has lots of luscious, shortish, curlyish dark hair and no visible skull dressing either, says her eyes are also making her cry. She cannot move them up above her immediate, straight-ahead line of vision. Without excruciating, migraine-like pain. Which she has been in, because of that, almost since she came round from the op. She says she is sorry but can’t talk right now and, totally humbled and distraught for her, I head back to my bed, just opposite, as nurses come to hers.

I am truly shocked by Ruth and her distress and can only wonder if she had my Prof Coakham to do her op. She did not, it turns out, but that, it seems is not the point. All neurosurgeons are brilliant beings. Brain tumours, like recovery from operations to remove them - and biopsy results and the prognosis resulting from those – vary in each and every case, whatever they may or may not think before you go into theatre.

The brain and its connected and crucial central nervous system control your very being. Even in the 21^st century, the brain and all its protective tissue remains something of an enigma. It is not until you get in there, when something is manifestly wrong – and, if indeed you can get in there in the first place – that you can begin to get a handle on what is going on inside. Only neurosurgeons and their amazing, specialist support teams can do that and they are few and far between.

At this stage I clearly can’t tell Ruth any of this at all – even if she’d want to hear it, right now – because I don’t know half of it myself. I am just sat on a hospital bed, in Frenchay, with what I hope is most of my own offending brain tumour removed and with My Boy’s Christmas Ugg boots on, which I didn’t get to open until four and a half days after Christmas, because I was in Weston General Hospital, from December 25 to December 29, laughing and joking in between being apparently seriously poorly after my “bog standard tumour” decided to go mad and trigger five nasty, uncontrollable seizures in a row. All on Christmas Day.

Time is dragging on Ward One and I am restless beyond restlessness. I am also constipated. What joy. I decide an illegal ciggie in the grounds outside is called for. Bound to help get things moving in the bowel department. Having already proved I can walk unaided, I secret the pack of ciggies and lighter I had already secreted in my holdall at home, into the pocket of my flat-pack fleece dressing gown and, putting new black Ugg boots forward, together with a matching black 60s-style wool cap acquired in the sale from Valerie Webber’s Winscombe clothes shop, march down the ward.

The inquisition starts at the central nurses’ station, which I try to by-pass. No chance. “Where are you going?” they ask, nicely, having clearly clocked the Beatles-esque cap, which was, remarkably for our wonderful little village of Winscombe, made in New York. “The loos are behind you.” I stop, smile and say I’m going out for a breath of fresh air. They say I can’t go out on my own and to not even think about it. I admit I want a ciggie.

They exchange glances. “Not on,” they say. I say they can’t stop me from going outside. They say they can because someone has to be with me if I so much as leave the ward and no-one will be, especially if I’m even thinking of lighting up. I say I need a ciggie to relieve constipation. They say they will bring me a Senopod or two. To my bed.

I ask when I will be a walk outside. They say when your husband gets here and not before. And only with him, and with me in a wheelchair. At the mere mention of my beloved husband, I realise I’m in for double trouble. John Boy is likely to go as bananas as the nurses clearly are for me even thinking of having a ciggie. They seem stunned enough that I am already walking, independently, to the loo.

I stroll back to my lonesome bed, steam a bit, and wish My Boy would just get a move on. Where is he, anyway? Twenty minutes later, he arrives, looking lovely, but without any signs of pavlova about his person. I rage. He explains and tells me all will be sorted by evening. I tell him he’s the only one who can take me out so I can have a ciggie. I think the nursing Gestapo have already got to him on the way in and he knows I’m distorting the truth in my mission to inhale nicotine. My latest, absolute passion of the moment.

John Boy placates me by saying we can get some fresh air later – after the Prof has been to see us. I remind him that is not for ages yet and then, as if by some pre-arranged, distracting magic, our great friend Lizzie Frith arrives, looking her usual tall, blonde, glamorous and elegant self.

Lizzie, who back in the mid to late 1980s, used to own and run Tizzie Lizzie’s ball gown and wedding dress shop in Redland’s Cotham Hill, has long since retrained as a recruitment consultant and, by sheer chance, started a three month contract at Frenchay hospital on Monday, January 7, two days before I came in for my op. She has taken time out from her lunch-break to blag her way into the ward to see me.

I prattle on to Lizzie about the missing pavlova, my persistent pangs for it and the lost cig opportunity, just as a nurse is dropping by to do my “Obs”. The nurse clocks the conversation and interjects with, “I won’t stop you and cannot. But you know our views.” John Boy looks at me as if to say, “I told you so. They are my views too.” I ignore the look and tell Lizzie how lovely she and her equally lovely, very blonde hair look. She tells me how amazing I look and knowing I look like a total potato head, seriously consider, for the first time ever, booking myself in for some kind of face lift and general overhaul when this is all over.

Prof Hugh Coakham arrives and Lizzie gingerly hugs me as she makes tracks to leave, saying she’ll pop in tomorrow too. I hug her straight back, with absolute force, just wishing I could leave with her.

The Prof and his incredible smiling eyes tell John Boy and me the operation went really well, all things considered; that he was able to get out much more of the tumour than he’d thought possible, without damaging the brain tissue. He asks about both my hands - right and left - and I say right, absolutely fine, left slightly dodgy.

He asks me to grip his hand with my left hand and I do, with as much show-off power as I can muster. I tell him I’ve already been up and about that morning, legging it down the ward and that John Boy and I are taking a trip outside in just a bit. I do not mention the cig mission. The Prof tells me I am doing remarkably, if not incredibly well. I gloat. John Boy gleams.

The Prof takes his leave, saying he will see us tomorrow, Friday, at 4p.m.at the Glen Spire hospital in Bristol’s Clifton where I am being moved to. He confirms a private ambulance has been booked, thanks to the Boy’s private medical cover for me, to transfer me there, around about lunchtime. And that he hopes to have the biopsy results from the tumour with him then. Jolly good, I say, but wonder why on earth it is I might need an ambulance, private or not. Aren’t I up and about, eating, talking and laughing?

We all say cheerio and I ask John to take me on that walk, re-pocketing my illicit pack of ciggies. I take John Boy’s arm in advance of reaching the central nurses station, just to prove I have My Boy to lean on. Not surprisingly we are stopped at Check-Point Nursey. They say I need a wheel chair but don’t seem to have one around, just at the moment. Can we wait? I say we cannot and that I have My Boy and his arm, not to mention the whole of his body with me. We are allowed through Check-Point but told not to be long.

We are not. We turn right out of the ward and right again though a door and onto a path. It is fresh and lovely out here. The sky is blue. The air crisp. I ruin it straight away by lighting up. John Boy looks anxious and embarrassed but no-one is passing. The cig makes me dizzy but I persist and light another straight away. John Boy looks disgusted but has been married to me far too long to know to try and stop me doing anything I have set my mind to.

Cigs done, we head back inside, buzzing the security buzzer to regain access to Ward One. I announce it is us and someone is there in a flash to let us in. We stop to say hello at Check-Point Nursey and almost hear their inaudible sighs of relief. They also mention that a wheelchair has arrived back on the ward and would I like it for the trip back to my bed? I decline, saying I’m enjoying My Boy’s arm and the snugness of the sheepskin inside my new Ugg boots far too much for that.

Back at the bed, I agree to get in it, before John Boy leaves, saying he’ll be back in at about 7p.m. With the morphine drip well gone, I am given a couple of Paracetamol capsules, just in case my head starts going off on one.

The Senapods – or whatever they are called and however they are spelt – seem forgotten – even though I am still constipated. The cigs did not work their usual magic, but I can’t really tell the nurses that, which is a bit daft, as they must be able to smell the smoke on me, anyway. I think I sleep because next thing I know it is tea time and the food trolley and the drugs are doing their rounds. I have no idea what I eat but know I do. And drink tea – at least two cups of the stuff while the trolley lurks by my bed.

I get up to go to the loo and washroom place, to spruce up for My Boy’s arrival, missing the right turning to it, as usual. A nurse is allocated from Check-Point Nursey to come with me. In the mirror I decide I look a fright and need to wash my hair. I am told I can’t, so soon after the op. Any hair wash will have to wait for at least a week.

Accepting that as there appears to be only a “finger of fudge” dressing covering a four or five inch scar running down the right side of my head which is stapled together to hold my brains in, all within a skull now fixed back in place by titanium screws and superglue, I concede on this one but resolve to take a shower, regardless, tomorrow morning, wearing my hideous white shower cap that brings back horrible memories of my first, sudden and unexpected early morning seizure at home, at Towerhead, on October 26 last year. It seems like a decade and many hospital stays ago.

John Boy comes bounding in, proudly carrying a little Quality Street tin. I am unaware that, in my end section of the ward – the HDU bit - flowers and the like are banned. A big bold notice says so but I haven’t noticed it yet. The tin is plonked with relish on my lap.

The Boy opens it for me. Inside is a little, perfect, strawberry pavolva. Penny Bond has made it for me and apologises, via the Boy, that the base is from M&S in Weston which she dashed into on her way home from work. I am thrilled and touched beyond words and promptly devour it, with no thought of sharing even a morsel with The Boy.

John Boy asks me if Donna has called. Thinking he means called in, I say no. She’s in Glasgow, when not in Arta on the northern side of Majorca, where she has a fabulous apartment. John Boy says no, has Donna rung. Do I remember her ringing?

I do not, but apparently she did. This morning. I have no recollection. Donna has because she called The Boy back to ask if I was really okay. She’d been on the phone to me, which a nurse had kindly bought over to my bed, and, for a full ten minutes, I’d talked about pavlova and a severe absence of tea and called her Jackie. I’ve known Donna since she was 17 and I was 19. She will be 50 this year. John had told Donna not to worry. It had been the morphine talking.

I worry I’m losing my marbles but John Boy says, “No way. You’re doing just fine. Brilliantly, in fact.” So I ask him to take me out for a ciggie. Donna would appreciate this, but demand at least two glasses of wine to go with it. As I would too, normally.

With Ugg boots on, the black Beatles-style cap too and the flat-pack fleece dressing gown tied tight over my jim-jams, we pass Check-Point Nursey and, for the first time. voluntarily report in, to check-out. A wheelchair is again offered but I decline. I truly need to stretch my legs. We go further down the little path this time and turn the corner to a bit of the building that houses Ward One and where there are no windows, which do not seem to be covered by either curtains or blinds at night.

John Boy supports me all the way as well as when we get there and whips off his suede jacket to drape over my shoulders for extra warmth. It is welcome. The night air is cold. John Boy tells me snow is forecast for tomorrow.

While John Boy despairs, I smoke two cigs in quick succession and look forward to the snow. I just love snow. As a kid growing up in Macclesfield, on the Cheshire/Derbyshire border, real, deep snow was an annual fixture in most of our winters. It always stuck and it always stayed. For at least a week or more. Or so I will always remember. Just ask my brother.

With what I am sure is doomed to be my entire night’s illegal nicotine intake complete, John Boy takes me back inside and back into the ward. My walking no longer seems to amaze the folk manning Check-Point Nursey and there seems to be some kind of truce on the unmentioned – and unmentionable - cig intake. I think The Boy must have had words about his exceedingly strong willed wife.

It is about 8.30p.m. and John Boy has to go. Drugs are to be dished out and more “Obs” taken. The Boy has a host of phone calls to make and emails reporting on my condition to write and send. We, kiss, we hug, sharing our love for each other and the sheer joy of the two of us surviving this together. Tomorrow is another day and by lunchtime we will be leaving the wonderful team of nurses on Frenchay’s Ward One. We - or I at least - will also be escaping Check-Point Nursey.

John Boy has already phoned ahead to the private Glen Spire hospital in Clifton to advise them his wife is a nicotine nut. They have advised him smoking is not allowed on the hospital grounds at all but if his wife is daft enough to want to smoke she can do so near the exit, on the public pavement.

Having had my initial MRI scans done at the Glen Spire I remember the exit, which doubles as the entrance too. It is up a flight of brick-laid stairs, immediately opposite the main door into the hospital. Easy-peasey pie for me and my Ugg boots and proper, outdoor clothes, now currently sitting, redundant, in the locker beside me. Whether it is snowing tomorrow or not, I can’t wait to get there. How wrong I will be. Gestapo-style anti-smoking nursey tactics will prove to be out in equal force, if, in fact, not even more force, at the Glen - particularly among the night nurses. And that won't be the only shocker. News on the old brain front has yet to come. And it will. Big time.

www.westonhospicecare.org.uk

www.coakham.com

www.cancerbackup.org.uk

How it all began...

It is 7.15 a.m. on Friday morning, October 26, last year. I've bagged the shower first as girlies always take that much longer than their boys to get ready.

Today I'm heading for a quick work start so haven't washed my wild and troublesome hair which is now still wrapped in a singularly unattractive shower cap. John Boy is shower bound too but finds me in the en suite first - where we don't use the shower because it is a bit lack lustre on water pressure - attempting to slap on some make-up.

He notices I haven't turned the lights on - strange as at my age I need all the light I can get to conceal the burgeoning wrinkles - and does so for me. I feel silly and come storming out with make-up basket in hand, red bath sheet wrapped around me and decide to do the three minute slap-stick make-up application in front of the big mirror in our bedroom, above the ancient mantelpiece.

I'm prattling on to John Boy about some bessie pals of ours - John and Linda who live in Yatton. John's grandchildren from his first marriage, many, many moons ago indeed, are down for the weekend and I try to tell John Boy the ages of these grandchildren who we have never met.

Their ages are something like five, seven, nine and 18 months, but I can't quite remember. John Boy, who is not such a detail freak as me, tells me to tell him later, when he has had his shower and trundles off down the landing to do so. I turn to face the mirror and the make-up basket, brain still battling to get the mostly primary numbers right and, in no more than a nanno second, my life changes forever.

My brain seizes on the numbers locked in my head and my right arm shoots up, Nazi salute style and stiff as a board. I drag my left arm up to try and drag the right one down. I can't. I see myself from above and realise I am somehow heading across the bedroom straight for the big tall window and the settee in front of it.

I scream for my Boy but no sound comes out. I know my right arm is rigid and my left hand is fighting with it. In my very frightened head, I vaguely register a kind of out of body experience. Then absolutely nothing.

My next conscious moment is mostly unconscious. John Boy is lifting me onto our bed and I am frantically trying to get out of it, like a caged wild animal. I am petrified; do not know who or where I am and barely recognise my husband, who is calling my name over and over again.

John Boy tells me to stay put; not to move a single inch and, in a household where we rarely call or make appointments with a doctor, charges down the stairs to do so.

His instructions not to move are lost on me. Entirely. I couldn't move if I tried. All animal survival instinct has drained out of me. It is gone. I am knackered. Exhausted.

I clock John's face - the face of my best friend, lover and soul mate - the man I absolutely loathed when we first met 27 years ago and now adore - and see white fear and trauma etched in it. I wonder what he has seen that I have not and dread being told.

Dr John Jackson, that morning's on-call doctor from Winscombe and Banwell surgeries arrives, pretty quickly, it seems to me. John Boy has dug out some jim-jams for me. God knows from where nor how he found them. Dr Jackson, who we have never met before; his spectacles and his concerned and smiling face are all lovely.

He asks if anything like this has ever happened before. John Boy and I both say no. Then I remember a strange thing from Tuesday - just three days ago - when I'd got up very early for work and, procrastinating, gone into our dining room, which doubles as a winter sitting room, with its warm dark red and green decor and squidgy sofas, to catch the mist rising over the Welsh hills you glimpse in the distance on particularly glorious days.

I'd been mentally working out a fully packed schedule of work calls and writing jobs for the day for Team Penrose when I just switched off to enjoy the mist and view instead, mentally calculating - as you do - when the kids, currently aged 16 and 14, would be through school, sixth form and college or university. The numbers were all primary ones - six for Amy and eight for Tom - give or take any gap years they might take in between.

My impromptu day dream becomes a little clogged. The primary numbers I'm trying to latch on to evade me entirely and my focus becomes totally fixed on the red and green walls in front of me. I can barely move my eye line to either the right or the left but fight to do so. As I was so calm before I feel very little panic, just a bit of anger as I'm clearly wasting time and need to snap out of this. I do. And think nothing more about it. I don't even tell John Boy later in the day.

I tell Dr Jackson who by now is of the opinion that what happened in the bedroom just a little earlier was a major epileptic seizure and the baby thing I've just described and so readily and rapidly dismissed on the day it happened, probably a minor one. John Boy and I exchange glances.

I am working on a major campaign for John Penrose which is all about photosensitive epilepsy and dealing with the world's leading expert on it. So closely, that Emeritus Professor Graham Harding from Worcestershire and his wife Pam are on the way to becoming close friends. Having had nothing whatsoever to do with epilepsy in my life, I am not just in the thick of researching it but apparently experiencing it first hand too. The irony is not lost on us.

Dr Jackson says what I really need is an MRI scan of my brain. Sooner rather than later. He says there is a waiting list of something like seven weeks on the NHS and asks if we by any chance have private medical insurance. By chance we do.

Just 18 months ago, John Boy had coughed up extra monthly dosh to add me to his own work policy when a bit of minor skin cancer by my right eye - a Basal Cell Carcinoma or BCC - taken out at Weston General which I attended as a day patient - looked like it had returned even closer to my eye and I was referred by Winscombe Surgey to a consultant at Frenchay

By the time the allotted NHS appointment came through, the second suspected BCC had miraculously and wonderfully disappeared but the incident had shaken both of us.

John Boy had moved to take up the option of including me on his medical insurance, opting to pay for it himself. At the time this gesture had both urked and humbled me. In the heady days of the 1980s and 90s when I ran and owned my own company - OutRight PR based in Bristol's Clifton - I had happily paid for private medical cover for myself and all my nine, vital staff.

Having 'semi-retired' seven years ago to a life not governed by 24/7 working, I'd dropped my own personal policy, which, being fully fit and healthy, if not slightly manic from full-on work related stress, I had never had cause to use anyway.

Dr Jackson tells John to contact the insurance company and get them to recommend a neurologist we can see, a.s.a.p. John Boy, who rings in to his work to say he won't be in the office that day as Dr Jackson has said I cannot be left alone, gets on the case straight away and by 4p.m., when Dr Jackson returns to see me as promised, John Boy has already made an appointment for me, straight after the weekend, on Monday morning, October 29.with neurologist Dr Ian Ferguson.

I survive the weekend without any more seizures and John Boy and I head off for Bristol and Clifton on the Monday morning. We meet Dr Ferguson who prescribes Epilim Chromo, controlled release anti-seizure tablets, commonly used for epilepsy and explains about late onset epilepsy. I am 51 years-old but still manage to find the 'late' bit offensive.

He then tells me not to drive while they do some investigations and sends us both off to the private Glen Spire hospital at the top of BlackBoy Hill in Clifton for an immediate brain scan on me. Before we leave we share the primary numbers thing with Dr Ferguson which seemed in some way to spark both my minor and major seizures. Dr Ferguson says this is not uncommon in epilepsy, particularly when related to primary numbers. He also tells us of a chap who used to go into seizure at the mere thought of his father. John Boy and I laugh politely but uncomfortably.

John Boy and I think this scanning business is all a bit quick but less than an hour later we are re-assured. The MRI scans are in the bag and we are on our way back home to Towerhead to drop off Dr Ferguson's prescription at the wonderful Banwell Pharmacy.

I ring Penrose to update him and John Boy heads back into Bristol for work. He's due in Surrey for a meeting next morning and, reassured by the day's events and the batch of tablets, I encourage him to make the drive down the M4 that evening to avoid an ungodly early hour start from home on Tuesday morning.

At 8p.m. that evening I'm working on the computer in my home office when the phone goes. It is the Glen Spire hospital. They have found what they think is a shadow on one of my MRI scans and want me to go back in for some more. I ask when. They say 10a.m. tomorrow morning. I ring John Boy.

We agree not to panic and I sort out the practicalities of getting into Bristol when I'm temporarily barred from driving by calling close friend Cathy Plummer who lives in Axbridge and currently has Wednesdays off work. Cathy readily agrees to drive me. I call back John Boy who by now is almost packing a bag himself to drive back home and tell him everything is fine.

He will be home on Wednesday night and it is only another scan. And only a shadow. Whatever that means. The new scans are done quickly and efficiently on Wednesday morning - and Cathy and I step out of the Glen Spire hospital and hit the charity shops down BlackBoy Hill.

On Thursday morning, October 31 - Halloween - I wake up at home feeling sick and ill. John Boy rings to make an emergency appointment with Dr Jackson who is working out of Banwell Surgery that morning. We are asked to go in at 11.15a.m. By the time we arrive I can barely walk from the Boy's car to the surgery and, once inside, cannot sit up, without flopping over.

I feel embarrassed and pathetic and without warning start to cry.- usually a once a year occurrence for me. John Boy goes over to the reception desk and poor Dr Jackson is hauled out of his consulting room. I am kind of man handled into a room and onto a consulting couch. I curl up towards the wall as I can't stand the light in my eyes. I believe I see the lovely Dr Jackson's spectacles rising up his forehead in some kind of angst. John Boy is with me and is, once again, as white as a sheet.

Dr Jackson tries to get hold of neurologist Dr Ferguson to decide on a plan of action. He has already mentally got an ambulance booked to take me into Weston General at least as he won't release me from his surgery in the state I'm in. Dr Ferguson rings in and GP and neurologist agree I can go home while Dr Ferguson - who will be on duty at Frenchay Hospital in Bristol over the weekend finds a bed for me there, so he can keep me 'under observation'.

Back at home, John Boy rings Penrose to keep him posted. I'm going to have to skip a long scheduled, regular update meeting with Penrose and Weston Mercury Editor Judi Kisiel - JK - the next day. I'd been due to do the informal agenda that Thursday afternoon. John Boy bans me from doing so, virtually unplugging my computer and locking the door to my home office which is down a steep flight of stairs in the rather over-grandly called lower ground floor of our 1820s house.

Penrose, extremely concerned and caring, says he will pop in here on Friday morning when he's back from Parliament, before John Boy drives me into Frenchay that same afternoon.

Hating the fact that I'll be missing the meeting but somewhat recovered from the morning's collapse, I realise with girlie dread that I have not so much as a sponge bag to my name - I always shove make-up and cleansers and all that junk into plastic supermarket bags - they take up far less room in holdalls - wherever you are going.

I also realise the only jim-jams I have are the grotty pair John Boy marvellously magiced up for me out of nowhere on Monday morning before Dr Jackson came round. I demand my new chauffeur takes me to Matalan and Boots, up the road at Worle.

The vanity preservation shop takes no time at all and £30 later we are back home. I pack a hospital bag, so ridiculously in advance that anyone would think I was due to give birth, not be admitted to the neurological ward of Frenchay for a couple or so days for something that is suddenly wrong with my brain.

We have an early supper of fresh fish and baked potatoes and tomatoes - which John Boy cooks - and I insist on - my Mum always says fish is good for the brain and used to feed it to my brother and I when we were doing exams. I take my day's second batch of anti-seizure tablets, as prescribed and, pretty much done in, go to bed early, with a kiss and a hug from my Boy who is exceedingly reluctant to let me anywhere out of his sight and hearing.

All is fine on Frenchay's Ward 17 and I make new friends of the two women - Wendy and Jean - in the beds opposite and next to me. Wendy has been transferred from the BRI with some kind of strange creeping partial paralysis that started suddenly in her legs and is now travelling upwards when it shouldn't be.
She is in her early 40s, very good looking, with five stunning children. Jean, a sprightly, pretty pensioner who smiles and laughs and jokes all the time, has been on the ward for a good six months after a fall at home which she is still waiting to go back to.

After a day on the ward, half sleeping, half not, nothing much happens in my camp. A colleague of Dr Ferguson comes to see me on Saturday and reports back to him that I seem okay as I'm up and chatting away in a chair next to Wendy's bed. I am due to be wheel-chaired off for some more scans at some stage, but, when not dozing or being force fed my allocation of drugs, am getting pretty bored.
It's a good sign. I must be okay and worry I'm there under false pretences. John Boy and Amy come and see me - my step son Tom can't stand hospitals - and stays away - I don't blame him. Don't much like them myself and apart from visiting them lots when my Dad was fighting his long and brave battle with cancer three years ago - generally try to avoid them like the plaque.

On Sunday afternoon, November 4, Dr Ferguson comes to see me and say hello. He is carrying my cardboard bag of scans, from the Glen Spire, marked up in my married name of Pat Hutson and labelled simply BRAIN and tells me the shadow that was picked up on the first batch of MRI's looks like it is, in all probability, an inoperable low grade, slow growing brain tumour- a glioma. I ask to see the scans and he puts them up to the window.

The light is fading outside and on the scans I see the inside of my brain. Spooky. It is getting dark and there are fireworks going off in the distance - it is Bonfire Night tomorrow.

Despite being told I have an inoperable brain tumour, inoperable because it is too deep inside the brain tissue for surgery, it is apparently low grade, meaning grade one or two, meaning not high grade at all - grade three or four, which I gather would be quite bad news and need major surgery, if that was possible.

I am ridiculously relieved and say so. I assume, stupidly, and with a presumption no journalist - current or former - should ever make that I don't have 'late onset' epilepsy after all and that, if I keep taking the drugs, I should not have another seizure either. This is brilliant news to me and I call John Boy at home to tell him, just as he is leaving with Amy to come and see me.

Dr Ferguson assures me the drugs he has prescribed and which I must stay on, should ensure I don't lapse into any more thoroughly alarming seizures, although I still won't be able to drive until I've gone at least 18 months, if not two years, without another seizure. I must write to the DVLA in Swansea and surrender my driving licence and also surrender to regular check-ups by the neurologist to monitor the effectiveness of my drug regime.

After the promised set of extra MRI scans are finally taken, I am discharged from Frenchay on Monday lunchtime, November 5. I have been in there for four days. John Boy collects me with relish. More scans - this time CT's - are booked for Frenchay, with me to attend as an outpatient, on Wednesday, November 14.

An appointment is also made for me to see Dr Ferguson at his consulting rooms at Litfield House, in Clifton, for 10.20a.m. on Monday, November 26. All of this means John Boy taking more time off work, where everyone from his immediate boss to his chief executive and peer team are being brilliant over all this stuff.

These doctor and hospital appointments are also interfering with my three-day-a- week work diary and some stress is building up on that front. We have a major local and national media campaign to launch from the House of Commons on Wednesday, December 5, where Penrose will be calling for a change in UK law.

The planning and clearance for this, if we are to do it properly, which we will, is mega. Local constituent, NHS dentist Gaye, whose 10-year-old son suffered a sudden photosensitive epilepsy seizure while watching a video game, has approached her local MP to help fight her corner.

Penrose has more than risen to the challenge and thanks to Gaye's dogged determination to get to the route of the issue, we are in touch with major players and figures in the industry who we are now on pick-up-the-phone first-name terms with and who are supporting our campaign.

Alongside Professor Graham Harding, world expert on photosensitive epilepsy and his wife, Pam, who we originally called Mrs Prof until we met her and discovered her to be at least 20 years younger than Graham, Gaye and I have become firm friends and have developed a habit of calling each other on the phone on Wednesday nights for updates. It is very hard to talk to a dentist when she is working.

This invariably interferes with my weekly viewing of How To Look Good Naked on TV - which I am strangely and oddly riveted by. Gaye finds this highly amusing but a couple of other girlfriends, who are equally obsessed with the programme, understand totally.

Scan and neurologist appointments all done in the last fortnight of November, and no seizures to report at all, on Wednesday, December 5, Gaye and I take the early train from Weston to London Paddington to arrive for 9a.m. We queue in the longest line ever for a taxi but get catapulted to the front for a cab share over the river - much cheaper - when some nice man hears Gaye and I talking about inoperable tumours.

I'd got up at 5a.m. that morning, calling Gaye at home, as agreed and just in case, on her mobile, at 5.40a.m., so as not to wake the rest of her family. As with any major campaign launch - and I have done dozens and dozens in my career - I am highly pensive and running on pure adrenalin throughout the day which ends at 9.30p.m. when Gaye and I arrive back at Weston train station. The two of us are shattered but laughing like a couple of little school girls.

Next day I am drained and imagine Gaye - who is back at work in her dentist's chair - is too. I get a call out of the blue at 3p.m. from Dr John Jackson on the home phone in my office. He has received a letter from the neurologist that morning telling him I am working too hard, given the glioma thing.

I am taken aback by the call but realise it relates to the November 26 meeting we had with Dr Ferguson when John Boy told tales out of school and mentioned I was working far too many hours and late into the night, if not early hours of the morning, on this campaign. I told them both at the time that this was my choice and my way of doing things.

At this same meeting, both John Boy and Dr Ferguson both told me to cool it on the work front and, as my drugs regime was discussed yet again and my latest
brain scans put on the showing table, I expressed some frustration at this latent tiny, bog standard tumour of mine.

Dr Ferguson repeated it was an inoperable low grade, slow growing glioma, with the only possible alternative option radiotherapy, should I/we decide to opt for that. It would not destroy the thing, he said, just shrink it.

Dr Ferguson said this would be a big step to take but added I was clearly a "get up and go kind of girl" and maybe he should refer us, after all, to Professor Hugh Coakham, one of the UK's a top neuro-surgeons - who was Bristol-based and who would re-assure us, on his, Dr Ferguson's line of thinking. John Boy and I said yes please and thank you and left.

I explain to Dr Jackson, who is still on the phone, telling me to call him John, and who has only ever seen me when I am ill, that I am a workaholic by nature.

He asks me what I am doing right now. I say I'm in the middle of sending update, post campaign launch emails to our local MP in the House of Commons; to Professor Graham Harding, world expert on photosensitive epilepsy and to Ubisoft, the world's fourth biggest video and computer games manufacturer.

I don't think Dr Jackson believes me. There is a silence down the phone before he takes a deep breath and says:" Pat. Do you realise you are very ill? Would you like me to come round and see you now?" I am shocked and stunned. I say no; that I don't need to be told that but burst into tears anyway. I am very tired, all of a sudden, and tell him today and right now is not a good time for a home visit.

I politely say good bye to Dr Jackson - another John to categorise in my bursting bank of John's - and put the home phone down. The office phone rings straight away and it is Penny Beare, fund raising ace and campaigns organiser for Weston Hospicecare. She and I are working on advance publicity for the charity's December 20 Candle Bag of Remembrance light glow at Weston's Italian Gardens.

Penrose will be there and I want to be there too as it sounds lovely. I will light a candle and make a donation for my Dad who died, at home, at 9.20a.m.on Tuesday morning, December 7, 2004, with my Mum and me holding his hand and talking to him as he slipped away.

As I cry, for no particular reason, about my glioma, and about being told by my GP that I am actually ill, Penny Beare hangs on the phone. She knows I have a brain tumour, which I resolutely continue to call a bog standard one - and can hear I am fighting the tears. Which I hate. So unprofessional.

I splutter out that my lovely GP has unwittingly upset me and relate the conversation. Penny stops all mention of work and spends the next half hour talking to me, to calm me down. She is possibly the most lovely person I have ever had the pleasure to break down with.

We agree I will draft her Candle of Remembrance light glow news release - and clear it with both her and Penrose by next Tuesday, December 11. Penny is away for a couple of days and I am away from Wednesday, December 13, escaping, with some time off work, to the Surrey Hills with my John Boy for our 13th wedding anniversary, on Sunday, December 16.

Despite everything everyone has been telling me about over-working, post big campaign launch day, I do take an evening off. I have told good friend Sue Gale about my tumour and she tells me about a friend of hers whose own friend was diagnosed with a brain tumour herself just this last August.

Jill G lives in Loxton, three villages away from us. Sue Gale and her friend Jackie put us two fellow brain tumourists together for a truly funny evening of tale swapping, on Monday, December 10, at the Langford Inn. The mutual friends are the fellow brain tumourists drivers.

Jill G and I are on the same anti-seizure tablets but Jill is way ahead on me on the scale of her tumour. Professor Hugh Coakham removed hers for her, at Frenchay, in major brain surgery for a glioma, which, when sent off, post-op, for biopsy, revealed itself to be of the Grade Four variety - the highest grade brain tumours come in.

Jill G, who has already undergone intensive radiotherapy, looks remarkably good and upbeat when I meet her.

Her radiotherapy, coupled with some early chemo - which I later learn her body could not initially take so early after major surgery, has meant she has lost all her hair and all her eyebrows and all her eyelashes too. She wears a fab blonde wig; shows me her ear to ear scar as she slips back the wig and tells me she is totally confident her hair and eye lashes will start to grow back. Very soon.

Jill's main concern is over her family, and, on the girlie front, over the weight she says she has piled on after being force fed steroids but that bulk, which to be honest, I don't even clock, having never met her before, is due to drop off when the steroids finish.

Jill G is inspirational. The first she knew about her tumour was when she woke up one morning and took her dogs for their usual walk and couldn't remember the dates of her children's birthdays. All elusive numbers floating, or not - around her brain, as in my case too.

Jill's husband and friends insisted she see a doctor. She did. At Winscombe surgery. Alarm bells rang and before she knew it, Jill was in for major brain surgery. It was all so quick she didn't even bother telling her mother about it. Just said she was going in for some tests.

Jill didn't have - and hasn't had - any seizures at all. Which brings me back to mine, which re-started suddenly and aggressively and with a vengeance on our 13th wedding anniversary in the Surrey Hills on Sunday, December 16.

We'd lazed around, reading books and listening to music in bed, all calm and relaxed and clearly lulled into a false sense of security because since the drugs programme started, there have been no seizures at all since the very first one, seven weeks ago. John Boy decides to put his scruffs on and drive down to the village shop for the Sunday papers, while they still have some.

He would be gone no more than 15 or 20 minutes. I got up to make more tea, wrapping up in a fluffy fleece, big bear dressing gown. I got as far as the sitting room in our tiny rented flat we use as a bolt hole for John's work and felt and knew a seizure was coming on.

The walls were closing in on me. I irrationally head for the bathroom, just to escape the walls. Big mistake. There is a step in there and as I stepped up it, my right arm did its rigid Nazi salute and as I fought with my left arm to bring my right arm down, I felt myself tumbling into darkness, blackness and fear.

I have no idea how long I was out for but when I did come round I felt a lot of pain in my right ribs. It seems I'd smashed into the washbasin which happily was still standing. John Boy was not back and I tried to work out where I was. Which was not easy. I stumbled into the sitting room to find chaos in there.

On our smart stone coloured sitting room carpet there was what looked like dog poo everywhere. I heard John Boy coming in and was mortified but couldn't quite clock who he was or sort out the mess and turned back into the sanctuary of the bathroom. John Boy took one a look at the mayhem in front of him and yelled out my name.

He found me in the bathroom, dazed and groggy and babbling and fighting with a wad of loo roll. He told me to stop. To not move. Hugged me. Ran for the phone and ran a bath which he told me I had to get straight in and helped me to do so.

I couldn't understand why until he started sponging me down and the bath water turned a mucky brown, right in front of me. He picked me up and out of the bath like I was a baby and, having towelled me down, called the local doctor's surgery for an emergency number He got one and rang it but was told there were no house calls being made that day and he'd just have to bring me in to Dorking, only five miles away, to see the locum on-duty doctor there.

He got out a bucket and floor cloth from under the kitchen sink and set about the mess in the sitting room. He made me drink water and rang our landlords, who live in the big flat downstairs from ours and who are friends, Mark and Donna - the MaD's - as we call them because they are - and brilliantly so. He asked Mark MaD to come and sit with me as I thought I was going to have another fit and dashed out to get the car up from our allocated parking slot down the drive.

At the doctors in Dorking, the locum chap was very nice indeed but not much help at all, apart from prescribing tranquillisers to calm me down and suggesting we make an appointment with my neurologist to review the drugs I am on once we get back to North Somerset. I had come up on the train and John Boy was not going to let me out of his sight before we went home together, with him driving, on Thursday, November 20, the night before we have our appointment with Prof Hugh Coakham, as now finally fixed, on referral, by Dr Ferguson.

Next day, Monday, I'm feeling fine but John Boy seems to have gone grey overnight and makes a flurry of phone calls for me. There are work things I won't be able to do later this week as I'm not around. And a Governors' meeting at Churchill Community School I will have to skip.

John Boy says none are important and calls Penrose too - on the quiet - to report on the latest tumour drama. Judi Kisiel calls the flat and I tell her the saga and that the candle light glow is going to be no-no for me and can she let Penny Beare know if she, Judi, is going.

We drive home and meet with Professor Hugh Coakham, on Friday, December 21. He has sparkling eyes and exudes trust and confidence and takes hold of my BRAIN scan bag which has been sitting on our kitchen stool at home for at least the last seven weeks, in between hospital and consultant appointments, takes a peak, and says the tumour is, after all, operable, by him, but it is not 'presenting' itself in a normal way.

The scans should be showing a 3-D image for a real tumour. They are not. He says I need to go back to see Dr Ferguson, urgently, to review my drugs, given the December 16, big-time seizure, which he is abjectly sorry for, and that I also need to go back to Frenchay too, for more scans and that someone will call me from there.to fix a date, very soon indeed.

Prof Coakham says he is going to ask the head radiologist at Frenchay to take a good look at all my available scans to date and give her opinion. He says this maybe after Christmas, which we are fast approaching. We say no sweats.

I mention Jill G and pass on her regards, saying I have met her. He says fabulous and makes a note to remind himself to write to her. He also says, quite pointedly, that while he clearly cannot talk about other patients and cases, my little glioma is not on the same scale as Jill's. At all. John Boy and I go home, feeling relieved and confident something is moving at last, even if it is just more scans and more drugs and more appointments.

We ring up Dr Ferguson's office and make an appointment for Wednesday, January 3, for a drugs review. Frenchay ring to book me in for more scans on Friday, January 5. The session, we are told, will take about an hour.

At Towerhead, we haven't so much as put up the Christmas tree yet. My Mum is due down on the train on Christmas Eve - the first time she has been with us for Christmas since Dad died - and John Boy and Tom will be picking her up from Bristol Temple Meads at 12.45p.m. that Monday The kids are with us from this weekend, right through Chistmas week. Tom drags out the very tall and life-like tree from the garage, assembles it and Amy and I decorate it on Saturday. We begin to look and feel like Christmas.

On Sunday morning I have a major, unexpected seizure in our bedroom, in front of John Boy and Amy too. Amy is brilliant. I recognise neither Amy nor John Boy when I come round. Amy tells me it is al right. It's the brain tumour not me. I love this brave girl so much. An emergency doctor comes out from Clevedon and prescribes more tranquillizers, which, given what is going to happen over Christmas, seem to do no good at all.

Twenty four hours later it is Christmas Eve and all is well at Towerhead. Mum has arrived and Christmas is in the air. Presents are wrapped, stockings filled and Mr Tucker- the Winscombe butcher's Royal Game Surprise - a wonderful mix of boned turkey, duck, pheasant and chicken - is in the big fridge downstairs, ready for slamming in the Aga tomorrow, when Geoff and Betty - John Boy's Mum and Dad and my wonderful in-laws are due with us at 12.30p.m.

We have decided we will open the kids presents all together with my Mum in our bedroom, early-ish, before John Boy, Mum and I make a start on ours in the red Christmas tree room, before Geoff and Betty arrive so we don't get bogged down by a fun pressie bonanza.

I go to bed early, because I think I should. I remain as excited as a little kid on Christmas Day and know I'll be awake very early and uncontainable with the joy of it all.

We wake early as predicted and John Boy makes copious cups of tea before we start the pressie opening with Amy and Tom and Mum. John Boy and I are both still in our scuffs when we finish and trot downstairs to make a start on our Christmas stockings. Amy, who has a new mobile phone, comes with us. Tom stays rooted to his bedroom, sorting out his new X-Box which has been bought with money pooled together from us, his Mum, his Granny and Grandad.

We get as far as my Mum's third stocking filler for me when I feel the first seizure coming on. I head for our ground floor loo and its carpeted soft floor, ban Mum from the room and, with Amy and John Boy alongside me, have my first fit of the day.

It is relatively short for me but I am tired afterwards and go back to bed. I say I don't need a doctor, thank you, and don't want to ruin Christmas Day. Mum stays with me, holding my hand. John Boy tentatively goes downstairs to make more tea. I see the fear in his eyes.

I snooze then turn over and begin the longest running seizure I have ever had. It lasts for 45 minutes. For once I can scream out, as I am lying flat. I want a doctor. I can't breathe. And I can't stop fitting. I can shout in a strangled voice and change my mind from doctor to ambulance. John Boy gets the shouted instruction from Amy and calls 999, abandoning the NHS Emergency hotline he'd been on.

A fast response unit arrives in the form of a very nice woman who tries to sit me up to clear my airwaves but I just collapse. She injects me with something and tries to take my blood pressure but Mum won't let go of me and the rapid response lady puts the bull dog clip thing on my Mum's finger instead. Just like the relatives in Holby City, Mum is told to move aside.

An ambulance arrives, along with Geoff and Betty, who are aged 84 and 88. I am strapped into a carry chair and carted down the stairs and onto a stretcher inside the ambulance. There seem to be lot of drips in my arm and they have an oxygen mask on my face. Don't they know I'm claustrophobic?

They tell me we are going to Weston General and that John Boy will be following. I start another fit as we leave the house and as we reach Banwell and clear the speed humps there, the fast response unit pulls up the ambulance and tells it to get its blue lights on. This is high drama for Christmas Day in Towerhead.

At Accident and Emergency I am stretchered in and hear the paramedics repeating what John Boy has told them. I have a low grade brain tumour but all my scans are at Frenchay Hospital undergoing further analysis.

I feel another seizure coming on and it feels like it's going to be a big one. I call out to one of the paramedics who was with me in the ambulance. He calls for someone else. I want John Boy but a wonderful Californian Rastafarian doctor called Jonathan comes to my side and holds me during this fourth seizure. It finishes and another one, the fifth of the day - starts straight away. Jonathan is there for it. And for me, saying nice calming things.

Jonathan gets me stable and starts asking me about the tumour. What is it and how big is it? I say it's a glioma and is supposed to be small, low grade and slow growing. He asks how small. I say I have no idea at all. It is just a blob on a scan to me.
He says they need to do a CT scan there and then and I am wheeled off for one. I have no idea if John Boy is with me or not.
The CT scan passes me by completely and the next thing I know John Boy is with me and Jonathan is wheeling over a little trolley with a lap top computer on it. He says, "We've found your tumour. Here it is. It is xxx centimetres big." I miss the fine detail on the centimetres but no matter. They have found a tumour so know we are not telling Christmas Day porkies. I am taken to an assessment ward while the medics do a bit of telephone liaison with Frenchay

I am admitted to Cheddar ward, on drips, and a nice young doctor comes along. I am prescribed steroids which apparently are to stop the swelling in my brain. I didn't know, until then, that my brain was swelling.

I stay in Weston General for the next four days, by which time my Mum, who has come with John Boy to see me each day, has already gone home to Cheshire. My steroid dosage is reduced to allow me to be "released into the community". What does that mean, I wonder, but being knackered, don't ask.

I arrive home in my big bear fleece dressing gown. Very glamorous not. John Boy needs to get some shopping in and friend and North Somerset Councillor Ann Harley comes to tumour-sit me as, once again, I can't be left on my own. Friends Trevor and Jean Perks also pop round from Sanford

I am reassuringly told I look pretty awful, because I feel it and any other observation would be a lie. I go for a bath when John Boy gets home and runs one for me.

I love it as I soak and scrub off the rubber bits that stick all over you when they apply ECG scans, which I seem to have had too. I hate it when I pull the plug out to empty the bath and water seeps out from under the bath all over the carpet. Another disaster.

I sneakily try my home office computer for emails and nothing happens. This is sad as before Christmas I had already managed to blow up my parliamentary laptop computer. I try the family kitchen laptop and there is no email connection there either. I pick up the roving house phone and none of the numbers will press down and ring out. That, along with all the other things, including me and my brain, seem to be pretty much done in..

For New Year's Eve, we are due at Colin and Jill's in deepest, darkest Somerset, Given the state of me, Col and Jill, who is a nurse, opt to come here instead, as we are closer to hospitals than they are. During the day I have an unusual call from brain surgeon, Professor Hugh Coakham, who tells me the top radiologist at Frenchay has now looked at my scans and thinks I may have something rare and odd called brain dysplacia. I ask him what that is.

He tells me it is something to do with brain cells not forming properly at birth. My Mum is going to love this one. I can already see the poisoned arrows winging their way in the post to the smiling eyed Prof as Mum defends the brain power of her precious daughter.
New Year's Eve comes and goes seizure free. Jill and I dress up in black frocks and swan around with our Boys who both look smart in matching dark navy shirts and exceedingly clean jeans.

On Wednesday, January 3, 2008, we are due to meet the neurologist, Dr Ian Ferguson, for yet another drugs review. John Boy has to be in Surrey for 9.30a.m.that morning for his annual appraisal but storms up there and roars back down the M4 to reach Clifton by 3.30p.m. Ann Harley takes me in from Towerhead. We all sit in the waiting room at Litfield House and wait to be called. We eventually are and leave Ann to look at the past Regency glory of this once fine and grand house.

Forty minutes later we are back in the waiting room with Ann. I am fuming in a most irrational and childlike way. Dr Ferguson has just upped my drugs; talked very little about brain dysplacia and severely disappointed me. Ann and John Boy try to calm me down. They do not. I am having crazy seizures, right out of the blue and something is obviously very wrong. I can't even get in the shower on my own at home in case I have a fit.

John Boy and Ann say don't worry. Just wait till Friday and the new round of brain scans, they say. Everyone is doing everything they can for you. Ever inpatient, just like my father, I don't feel they are. My life is out of control and from being the most independent person on the planet I find myself totally dependent on others. I thank my lucky stars for my friends, family and husband but that is as far as my generosity extends right now.

Friday, January 5 arrives, dark and gloomy. John Boy and I leave home early for Frenchay but naturally get stuck in traffic on the way in. The scans are due to take no longer than an hour and John Boy has arranged for our Mr fix-it computer man, the amazing Alan Jones, to be at the house for 2.30p.m.when we should be well back home.

But the scans take ages. Far longer than expected. There are so many of them to be done and needles to be shoved in my arm to inject a dye that will show up brain tissue.

We don't leave Frenchay until 1.55p.m. All through the scans I have been obsessed with getting at least one of the home computers working today. It is my mission. John Boy then compounds our lateness on the return journey by missing the M4 junction completely. I forget to realise that he is as stressed as I am. But not about piddling computers.

We arrive back home at 2.32p.m. precisely. Alan Jones is on the doorstep. John Boy preens. He has got his mostly house-bound girlie home in time to get her precious computers fixed.

Alan sets about sorting the problems. He condemns the home office computer as temporarily, permanently redundant. A main circuit board, or whatever they are called now, has blown out. Bit like my brain.
Alan says he's taking it away for a new part and will return it on Monday, straight after the weekend. I feel like asking him to take my brain with him too. The family laptop in the kitchen is fixed for all things email and internet connection wise, simply by hauling in a special, spare, thick-wall busting socket connection for our wi-fi connection. Whatever that is. I am ecstatic and hug Alan.

John Boy shoots off to Banwell Pharmacy to collect the new Dr Ferguson drugs from the prescription he dropped off yesterday evening. All is happy in my world.

I say goodbye to my computer hero Alan and the phone goes. It is Professor Hugh Coakham. I tell him we saw Dr Ferguson on Wednesday and it was all pretty inconclusive and that we've just had the latest batch of scans done. He tells me he knows that and reminds me he is calling me. Not the other way round. He basically tells me to be quiet and says something like:

"Pat. I've just seen today's scans and you do have a brain tumour and it needs to come out. I've booked you in for theatre at Frenchay for 1p.m. next Wednesday, January 9. Is that alright?"

"But we do need you to be there for 9a.m. for more scans to pin point where we are going in as the operation is a bit tricky and we have to make sure we don't damage your arm. Do not eat after midnight on Tuesday and only have a quarter of a glass of water on Wednesday morning - no more at all.

"Take your usual tablets with the water, on the morning of the operation, as we need you to have had them."I think Hugh then says I need to take the tablets in case I have a seizure on the operating table, but I'm not sure, because I have gone temporarily deaf with shock. It is 3.15p.m.and we have been back from Frenchay for no more than 45 minutes.

I have the presence of mind to ask the Prof for his mobile number and his home number too, so John Boy can ring him, if he needs too. Hugh gives both to me without flinching, saying my Boy can call him any time. I also ask Hugh about the brain dysplacia theory. He says that was a red herring - a phrase I haven't heard in donkey's years but will now use and remember forever.

I try to call John Boy on his mobile but he is driving home via Winscombe where our mobile phone networks don't work so I just leave a message. He is back very soon and is very positive. Something is happening he says, and that is good, it is what you wanted, what we wanted. I am inclined to agree but am a bit freaked out by the thought of an operation on my brain.

I have never had an operation of any kind in my life. John Boy goes somewhere, to work in Bristol I think, because he needs to. I need to be on my own. Which is very selfish? Penny Bond rings up. Like fellow good friend and farming neighbour, Jan Comp, Penny has rung or dropped by, every single day, sometimes twice a day, since my little glioma was found, to check I am okay.
Penny invites John Boy and me for supper at theirs, up the road in Sandford, on Sunday evening. Her hubby Phillip will be cooking a roast. Janet and Richard Price will be going too. We joke it can be a last supper before the big op. Janet P, who, along with Ann Harley, is famed locally for her homemade strawberry and raspberry pavlovas, will be bringing the pud. It all sounds great.

Saturday we have a supper planned here with Gaye Herford and her partner of two decades and more, Johnny. It will be the first time we have all got together socially and the first time John Boy and Johnny have met. Gaye and I reckon the two will get on like a house on fire. They do.

The supper is also a good safety valve for us all. I may have a seizure, which Gaye knows all about and Johnny's Dad, John Senior, may take a turn for the worse. He had a big stroke before Christmas and has been in Weston General since just before our House of Commons campaign launch on December 5. It is still very much touch and go for him and like us, their Christmas was suspended because of hospital dramas, fear and dread. We agree a night of merriment is needed if we can just avoid any calls on or from hospital for a few hours.

With the weekend calendar sorted, John Boy and I are happy bunnies. I ring my Mum and tell her about the op and she is very calm indeed. Her central heating has packed up and this seems to be her major focus. Which is good. Everyone needs a focus and mine starts, right now, with getting better and my brain and its inconvenient tumour being sorted by Prof Coakham next Wednesday.

The weekend John Boy and I share is full of laughter, friends, love and fun. I am still on steroids and have, despite losing weight, having been pretty naturally skinny before, developed an incredible taste for all things sweet. I devour all food put in front of me over all our suppers and on Monday morning still hanker over Janet Price's pavlova. I know some was left over.and is probably sitting in the Bond's fridge.

Monday and Tuesday go in a flash and all I really remember is taking calls from loads of friends, ringing my brother, my Mum and mum-in-law and changing my work answer machine message and smoking far too many cigarettes, much to John Boy's disgust. He smokes about four roll-ups a night, which is very annoying and very controlled, compared to my 15 or 20 filter fags a day where consumption seems to depend at any time on my renowned overdrive levels.

The only good news - for me at least on the fags front - is even neurologist Dr Ian Ferguson has agreed that maybe now is not the best time to give up. I consistently throw this fact at John Boy when he complains. He consistently retorts that this is not quite what Dr Ferguson said. I dispute this as I have my own journalist's shorthand note of it.

Oh, and taking the still fully decorated Christmas tree down, late - after Twelfth Night - on Tuesday January 8 - operation day minus one - which friend Steve Egginton does for me when he drops by as I am incapable of doing so as I can't concentrate and, straight after that, going with friend and neighbour Jan Comp to Sue Gale's at The Webbington to get my legs and bikini line waxed. Vital for imminent brain surgery, of course, and a spoiling, essential luxury Jan treats me to.

Operation day, Wednesday January 9, looms and our alarm clock is set for 6.30a.m. To get to Frenchay for scans at 9a.m.I reckon we need to leave our house at 7.15a.m, We do but get stuck behind a digger heading for the new housing development at West Wick, on the way to the M5. Fantastic. My anxiety levels rise along with the foul wind and rain that is battering the car.

On the M4 there has been a crash and, stuck in the tail-back, I know we are going to be late. John Boy finds a phone number in his bulging hospital file and rings in to say we are running just a little behind. The hospital says not to worry, we are not the only ones and to drive safely. I calm down which pleases John Boy no end.

We land - or so it feels at Frenchay and find a park right outside the neurological unit. I dash out and run down the tunnel-like corridor that takes you to the MRI scan section. I report at reception, apologising for being 15 minutes late. I am given the usual form to fill in and do so, then get called in just about straight away.

The radiologists are geared up to go and tell me to lie very still for this set of scans as they will be Prof Coakham's blueprint for my op. I do, for what seems like ages and at some stage see the Prof himself behind the protective glass in the monitor room taking a butchers at the images coming through from my brain. He is smiling, as usual.

Out of the scanner, I am reunited with John Boy and we head off to find Ward One where I will be taken after the operation. We press the security buzzer, announce ourselves and are let in and shown to a waiting room as my bed at the far, top end of the ward is not quite ready yet. The Prof pops into see us both with a consent form. He runs through the op which he says will now start at 12.30.p.m. and take about five hours. It is currently 11.30a.m. and I wonder if I still have time for a last illegal ciggie, outside. John Boy thinks not. But of course he would.

Prof Coakham announces they will be waking me up during the operation - a new one on me - the tumour is very close to the neuro whatsits controlling my motor drives.

There is also a question of whether I am one of those rare beings whose motor neuro functions are governed right to right, inside the brain. It is usually left to right, or opposites at least, but my tumour is on the right side of my skull and my seizure arm is also my right one.

Curious, says the Prof, with some glee, but they will only find out in theatre, which is why I will be woken up and asked to make circles with the fingers of both my hands as Prof Coakham does not want to attack any bit of the brain that will restrict my future ability to move my right hand, arm or leg. I am very glad about that and say so.

The Prof adds that although I will be woken up I won't feel a thing but I will see his medical team who I will meet and be introduced to beforehand in the "prep room" as well as some very bright theatre lights from under some blue plastic sheeting they use to keep everything hygienic.

I try not to look at John Boy as I just know he will be ashen-faced. He is very squeamish.

I sign the consent forms, shake the Prof's hand and say I'll see him later. John Boy and I are taken down to the far end of the ward where the bed is now ready for me. I happily and completely miss the sign that says I am entering the High Dependency section of the ward. John Boy does not but keeps Mum.

I am given a theatre gown to put on and do but, having never worn one before, do not realise there are tie tags right the way down the back to protect my modesty. John does and ties them for me. In no time at all a stretcher bed arrives for me. I bound up and try to follow it on foot but it is suggested I may be better getting on to it instead. I do and am wheeled down the ward with John Boy at my side. We kiss and say we love each other as he is asked to leave me at the "prep room" door.

The anaesthetist is introduced. She is called Sam and very smiley. I like her instantly. So too is the specialist theatre nurse, Heather, who has a lovely Scottish accent. So too is a smiley Australian whose name I don't clock but who laughs a lot too.

The three "girls" set about prepping me which seems to involve putting lots of needles and tubes into my arms and wrists. After all the needles and jabs I have endured to date, this does not bother me at all. We are all talking and laughing away together as if we are at a girlie drinks party. For one quick moment I wish we were. A glass of wine and a ciggie would go down fine right now.

The Prof's very tall and solid second surgeon comes through from the theatre which is behind us and says hello. He is called Antonton, I think. He asks what's so funny out here and we all laugh back. The Prof comes in, I think, in a theatre gown and we are off and I must suddenly go out like a light be because I remember nothing at all until I see the smiling face and hear the soft Scottish voice of Heather, the specialist theatre nurse.

All is bright and light inside my little blue plastic cocoon, a bit like something from Alice Through the Looking Glass, I think. I say hello to Heather, calling her by her name, and feel rather than see the Prof behind me. I call him Hugh and ask him if he's got the tumour out yet and, if he has, if it has come out in one.

He says, it is coming out but doing so in bits. I ask him to get a move on, which I hope is not rude and also if that's a drill I can hear at the back of my head. It is, he says, and I realise its drilling into my brain. The team asks me to move my hands and make finger circles. I not only do that but raise both my arms too and also pretend I'm working a computer keyboard. My enthusiasm for the job in hand is rewarded by copious thanks from the theatre folk who seem unable to shut me up, now I've started talking.

I reckon they finally do as the next thing I think I know I'm back in the "prep room", being woken up for real. Prof Coakham is chatting away and tells me I'm being wheeled to a recovery ward. We get there and I see a telephone on a central console and ask Hugh if he will call John Boy on his mobile number.

He kindly does so and I hear him telling my husband the op has gone well and I am out of theatre and he can come and see me about 7p.m. I thank the Prof for making the call and turn to subject myself and all my drips to a nice male nurse who wants to disengage lots of them. I remain in the recovery room until about 6.00p.m., I think, before being wheeled back to Ward One and my end bed in there. I wave at the young woman in the bed opposite me who I later learn is called Ruth. She waves back but is in tears. I don't know why, yet.

John Boy arrives out of nowhere and we hug and kiss. He was expecting my head to be covered in bandages but all he sees - and I haven't seen it myself yet - is a finger of fudge size dressing, running along the right side of my head. All my hair is still there, wild as ever and John Boy says I just look like me. I thank him and hope it isn't just a bit of verbal flattery.

John Boy stays for ages but then has to go. It is Obs time as they say in Holby City and the drugs trolley is coming round too. I'm on a self ministering morphine drip that I'm told will only self minister when I push it every five minutes so I can't overdose. I don't feel any pain at all and decide to leave the morphine be. This is not such a good move as the next morning they take the drip away and for the next four days I am on just basic Paracetamols for any pain.

But that's another story. I am alive, my tumour is out, my arms are moving and so are my legs, The Prof is happy, John Boy is happy and so am I. It is over. They found a brain inside me - which some friends questioned if they would - and the bulk of it is still there.

Useful links:

WestonHospicecare:- www.westonhospicecare.org.uk

Professor Hugh Coakham:- www.coakham.com

Brain tumours and the like: www.cancerbackup.org.uk/Cancertype/Brain/typesofbraintumour/Astrocytictumours

Keeping a sense of tumour

Pat Daniells.

FORMER journalist and ex-PR company owner and director, Pat Daniells (51) is Communications Manager for John Penrose, MP for Weston-super-Mare. On Friday morning, October 26 last year, Pat suffered a sudden and total seizure at home.

Originally thought to be the onset of late epilepsy, a series of neurological investigations, including MRI and CT scans, revealed what was thought to be an inoperable low grade, slow growing brain tumour - a glioma - considered to be controllable by a daily battery of anti-convulsive drugs.

Pat was barred from driving but continued to work as normal - which meant flat out - as planning for a major media campaign, to be launched at the House of Commons on December 5, was underway as John Penrose worked to fight the corner of a local constituent, NHS dentist Gaye Herford whose 10-year-old son had suffered, of all things, a sudden photosensitive epileptic seizure while watching a video game.

Weston’s MP would call on Government to change UK law and make it illegal for video game manufacturers to release non-screen tested products.

The campaign, backed not only by Professor Graham Harding, global expert on photosensitive epilepsy but also Ubisoft, the world’s fourth biggest video games manufacturer, went ahead as planned and was a stonker. But, on the home front, by mid to late December, Pat and her seizures, along with her by then still questionable and slightly odd tumour, were out of control.

After a Christmas spent in Weston General Hospital, on Wednesday, January 9, Pat was admitted to Frenchay Hospital in Bristol for life-saving brain surgery to remove a by now fast growing tumour, re-categorised, under biopsy, following a five hour partially ‘awake’ operation to avoid paralysis of her right side, as a highly aggressive and cancerous Grade Four glioma - the highest category of brain tumour going.

Pat at the computer with 'John Boy'.

Pat and her husband, fellow ex journalist and PR guru John Hutson - John Boy - have lived at Towerhead on the east side of Banwell since July 1996.

John Boy’s children - Pat’s stepchildren of 13 years standing - are Amy and Tom Hutson - aged 16 and 14 respectively.

With Amy due to take her GCSEs this year, both teenagers are at Churchill Community School and Sixth Form Centre where Pat is a local authority appointed Governor.

Due to start a course of intensive radiotherapy and oral chemo treatment at Bristol Oncology Centre in mid February - and advised that her tumour is currently destined by medical science to make an unwelcome return within the next five years - Pat, her husband, family and their network of incredible friends have decided on their own course of only positive thinking and action to zap the brain invader, based on American research demonstrating that a positive outlook can help the body boost its own immune system and beat the beast of cancer.

Pat had to model for a clear plastic mask which she will have to wear during radiotherapy treatment. She was dreading this as she is claustrophobic but 'bravely came through with flying colours.' Plaster of paris is applied over cream and gauze.

After finding a temporary replacement for her role, she aims to continue diving in and out of her three-day-a-week job to keep her boss, John Penrose - JP- and his action-packed campaigning programme on its toes.

As part of her and her husband’s self-repair programme and with the support of JP - who Pat simply calls Penrose to avoid confusion with her own John Boy - Pat Daniells today launches her own weekly up-beat and hopefully therapeutic on-line blog, only in the Weston Mercury.

Featuring a host of mostly local characters, ‘Keeping Your Sense of Tumour’ has a cast list of dozens, including new friend and fellow positive thinking brain tumourist Jill G who, by sheer co-incidence, lives just three villages away from Pat in Loxton and who underwent major brain surgery for the same Grade Four category glioma last August - without even telling her mother first.

Pat and Jill were brought together by mutual friends one momentous and amusing evening last December.

Introducing a series of link sites, Pat will also be using her blog to raise awareness of and funds for the work of Weston Hospicecare.

Alongside John Penrose and the Weston Mercury, Pat had been liaising with the local charity since before her tumour reared its ugly head last October.

As bits of her hair start to fall out as chemo and radiotherapy does its zap-attack work over the next nine months, Pat expects to be visiting, on referral by her GP, Dr John Jackson, the widely renowned and highly regarded Uphill-based Weston Hospicecare centre for some TLC as part of her recovery programme.