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, 17th 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.
