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