Tuesday, July 19, 2011

Carpe Diem
It’s rather a glib phrase isn’t? You see it on pots, cards and the sort of sundials you buy in those select ‘in the know’ catalogues for the aspiring middle class. It’s the names they give them that get me; “The Museum Collection”, “Culture Vulture”, “House of Bath” (based in Manchester by the way).
Well anyway, my darling did what E. M. Forster suggested you should do with clichés; she breathed new life into this one by seizing the day, the fatal day, before it even happened.
She had told me that there was a folder called ‘funeral’, but I couldn’t bear to look at it until she had left us – it was just too close. Even seeing the reduced person she was in the last few weeks of her life I knew that she would have taken a hand, she was, after all, amongst a host of other things, a brilliant event organiser – everything from the annual British Pharmaceutical Conference with a cast of thousands, to small discussion groups for mental health sufferers.
Well what I imagined would be odd suggestions about an order of service and appropriate tunes turned out to be much more. One of the mourners said to me “I think that was the most amazing ceremony I’ve ever been to!”
What she had done was to ‘organise’ the whole thing: order of service; script for the humanist celebrant; readings; music, and even left the catalogue number for the coffin. “I want a wicker coffin. I don’t want to be hemmed-in, and I’ve always been at least pale green in outlook”.
The three readings were ones that she had written about us, family and friends – typical of her; she would still be thinking about others from beyond the grave. We were to write the last reading, and she knew that Sam, our family laureate, would write a poem for the occasion.
So what I am going to do is reproduce as much of this ceremony as I can for you on her beloved blog. I will include an electronic version of the Order of Service designed by the lovely Jo who worked with Jean for over 20 years. She turned Jean’s order and Jessie’s suggestions into a simple, beautiful testament for the day. Then there will be the three readings which Jean left and the fourth which we put together in her memory.
At family funerals eldest son Sam usually plays a beautiful Irish air called ‘The tip of the Whistle’ on the penny-whistle - at the interment. He didn’t think he could do it on this occasion, but Joe, second son, recorded him playing it a couple of days before. Joe tells me that we can probably insert a link for that too. So we will try.
The only thing that we couldn’t do at the crematorium from Jean’s original order of service (the place was jam-packed with people standing on top of each other almost), was to get up and dance to ABBA singing ‘Dancing Queen’ (with bubbles). We did that at the local cricket club afterwards, so you will have to imagine it.
First reading
Read by Andree Mackay, Sister in law
The most important relationship in my life has, of course, been with Stewart. I met him at 15 and fell in love at 16, married him at 18 and though we had our ups and downs, thicks and thins, we stayed deeply in love right to the end. I wrote about our relationship on my blog, I called it
It's the thought of leaving my kids that brings the quickest tear to my eye; it just does. I try to think about leaving Stewart behind, but I can't formulate it in my mind. I think he will be coming with me and that is just daft. Certainly the he that is he that is us will, but he will be left and shattered and forever different. But I still can't conceive of it.

There is a beautiful place near our French house called Limeuil, we went there for picnics by the river and for the annual pottery fair where we always bought something even though we had no bloody room in either of our houses. If you walk up the hill it's one of “les plus belles villages de France” but the wonder of it is the river.. . or rivers.. I should say, as it's where the Vezere meets the Dordogne and they become one river. They are both massive and brown and godlike; they rumble and bicker together as they meet then merge with little flurries over rocks and banks. Just a way up from the picnic site there would be no way of separating one from the other, their weeds are each other’s, the fish can't tell the difference. If one were to dry up there would still be all the life from the other - from before, that would be impossible to disentwine. So is that like us; yes and no; no because rivers can't feel and miss and want; yes because we are one miraculous, mucky thing, sometimes out of control and sometimes deep and beautiful; and, it has proved, always feeling the pull to be together.
Second reading – Denise Burns, friend
I can remember a blissful day when I was about 21, it was in a place with a bandstand and lots of grass. I was playing with Jeanie and Jamie: my niece and nephew and we were chasing around playing catch. I knew then I had to have some children of my own and have them quickly. We had been waiting until we could afford a house and I had finished my degree. Switch to another day, perhaps 14 years on when we were rattling along in one of our old bangers, with all four children aboard, Sam, Joe, Luke and Jess, through Shropshire I think it was. We were playing 20 questions and I remember thinking ,“ I don’t think I will ever be happier than this”.
Having children is an amazing thing, they sort of become part of you but apart; they are your life but more important than your life. They take over your being.
For me family memories revolve around food and eating, en masse, at our kitchen table. There were seven of us every evening, including my Dad. We didn’t have much money at all at first so it was often omelettes or spaghetti bol but delicious all the same. We would natter continuously as we chomped and it wasn’t just to drown out the noise of Dad’s false teeth rattling around. Often it was about politics, religion or the latest news. There was gossip and there were Luke’s questions to Sam: did Fred Astaire ever do shot-putting? Do I have to say I am a Christian boy at school even if I don’t believe in God; will you write a song about tap dancing on Rupert the bear. (he did)
Often we were joined by other members of the family: my Mom and her second husband the beloved Fred; Peggy and Eric - Stewart’s, Mom and Dad; Neil and Andree, my brother and sister-in-law and often Jeanie of the bandstand memory; Graham and Ruth and Grace, Stewart’s wonderful devoted brother, his wife and their lovely daughter. Later our kids brought their friends who became our friends, and then their partners: Tom; Aleks and her daughters, our step-granddaughters, Hannah and Chelsea; and Julie from France. Their parents and siblings too have become part of the family and with great joy recently their children: Harry and Danny and the twins Max and Charlie, and we must not forget Scoobie, Joe’s dog: oh what a difference they have all made to our lives. I cannot put into adequate words the complete joy that grandchildren bring.
All this was a wonderful mix of fantastic food and people we loved. I had had a very different childhood in many ways, we ate on our laps and it was often Steaklettes and Angel Delight or warmed up school dinners but I was given the most amazing grounding in political awareness, art, kindness and bravery by my Mom and Dad and a lot of laughter, what a pair they were. My wider family of aunts, uncles and cousins were all characters in their own right. I thank them all for making me what I was.
Of course I can’t bear to leave all of this family life and for there to be a gap at that table in the kitchen, but I know that they will all keep me alive in their hearts. I would love to have been around longer for my children and grandchildren but it is not to be. So, keep eating, loving and remembering my darlings.
Third reading- Ruth Harker, sister in law
Friendship and fellowship
The other big boon in my life has been the amazing array of friends I have had through the years. This all started in the black and white years of the 1950s with Lynda, Frieda, Kathryn and Ann, and the boys of course who we chased around Gleneagles Rd and in the playground; then on to secondary school where Berenice became and has remained all my life like a surrogate sister. At University I was a married woman and so not open to many of the frenetic friendships that went on but Doug and Gloria who came to live near us after University have remained fast friends as has Sue who was a weirdo scientist but we overlooked that.
I married into an amazing set of friends from Stewart’s school life: Duncan and his wife Maggie; Les and Jude, Mary and Mike, Lynn and Doug and Sue and Mick. For over forty years and most particularly when we were young and fancy free, and also since I became ill, they have lightened our lives and mixed in their own blend of experience and humour.
There are some friends who become something other, part of the family but different, your soul mates I suppose. They come and go but we have been so lucky in these sorts of relationships over the years: Nita and Tony; Rudy and Celia, and Richard; Pat and Dick (40 odd years and still going strong – in fact stronger); and in the last two decades Chris and Denise our inseparable mates. With these there is a silent understanding and an unbreakable bond. Some like Rudy and Celia split up but stayed close to us even though separated by thousands of miles.
We have been extremely lucky in living in a road for 30 years that is bursting with fellowship and community spirit. We have loved the parties and the fireworks, the quizzes and the neighbourliness. And when we were lucky enough to be able to buy our paradise in Maumont we found it there too, bathed in sunshine and bursting with bon viveur.
Friends also come because of kids and politics, Julie and Trudie are notable examples of these, guaranteed to make me laugh. So many others as well – it would take a book.
At work too I counted everyone I worked with, with one notable exception, as a friend. Work became a fulfilment and an obsession at times and the support and laughter I shared has been one of the best parts of my life. I know I was famous for lists, but I’m not going to make one now. You know who you are, and that I love you.
I have talked, giggled, drunk and danced with all of you, thank you so much for enriching my life and please carry on for those left behind.

Fourth Reading – From us to her
Sue Williams, friend
Apart from Sam’s poem all the words you have heard so far have been Jean’s words, and, true to character, they have all been about us, her family and friends.

Now is the time for a few words about her. We are not going to have the usual potted biography. We are all here today because we know and have been touched by the facts of her life. Suffice it to say that she was a clever brummie girl who had academic success and then devoted the rest of her life to making things better for others. In the seventies she ran a campaign exposing the pain visited on people, her mom included, from taking a heart drug made by ICI. They made a Panorama programme about her campaign. She got 14 million pounds in compensation for people – a fortune in those days – without a thought about personal gain. This was typical of her quiet determined nature.

Here then are some words that family and friends have to say about Jean.

Friends say:

“She was so brave, funny, clever and kind.”

“She was an inspiration to us all, not only in the dignified way she coped with her illness but also as an example in life – as a mother, a wife, a daughter and a friend.”

“I will always remember her as being full of life, kindness and strength, and I always looked forward to being in her company.”

Neighbours say:

“There will forever be a void in Livingstone Road.”

Workmates say:

“Jean was special to all who worked with her. She was always confident and made up for all our inadequacies. She was always supportive, never seriously critical, and when she was with you everything seemed manageable.”

“Jean was a wonderful person, warm, fun to be with, a great friend and colleague. She was immensely talented and achieved so much.”

And now to her children;
Joe wrote:
I have been asked to say a few words about my mother Jean, but there are no words. There are no words to describe what a wonderful wife, mother and friend she was. There are no words to describe how we will all miss her sunny, positive disposition, her wisdom and council in times of pain and uncertainty. There are no words that could ever do justice to the way we loved her and the love she showed to us all.
Luke wrote:
Around the time my Grandma Peggy died, I was very sad and approached my mom with questions of the here-after and whether Grandma was in 'heaven' It took real devotion and love from mom to tell me truth, that no, we could not make everything seem better and easier by palming this over to a 'god'. She told me that what lives on from a person is the memories we have shared and that when a person dies they are not really dead because the memories of that person live on in the minds of those that love them and are passed on throughout the ages. Aldous Huxley wrote that 'Every man's memory is his private literature'. With memories of my mother we all have a library of inspiration.
From Jess:
My mom was everything I am and everything I am not. She taught me to be a friend, a mother, a grafter, a feminist, a wife, a socialist; a women. What I didn’t learn was her grace. I didn’t learn to fight quietly, to let things go and to pick my battles. Her greatest skill was to fight and win, love and be loved without anyone realising she had done it. She was a master of the art of diplomacy.
My mom was like medicine. When I was pregnant and scared she made it seem like nothing to be scared of. When I wanted to quit my degree she did all the bloody work for me. When I lost my rag (all the time) she calmed me down. When I had nothing to wear she made me feel a million dollars; which probably is the amount she spent on clothes, holidays, haircuts and lunches for me. She made me feel like it was a privilege to be my mom.
Now I face the fight and the fun without her, however she gave each one of us, me especially, so much of herself that I have credit in the bank. I have enough love to make sure that she carries on as Jean the activist; Jean the friend; nanny Jean; My Mom.
The final words about Jean come from her husband of 43 years:
Stewart said:
Simply this:
She was my going out and my coming in. She was my loaves my fishes, my heat my light, my longing, my desire.

Sam’s poem:
A Mother’s Words

To read the last few pages of a book
And find out how it ends before the story
Gets there, is what the worst kind of a crook
Would do, you said, it was like voting Tory.
But sometimes something makes me want to look –
A kind of narrative momento mori.

So when I teach my own kids how to read,
Can I forget these last pages you read
To me, the way the words began to bleed
Into each other as the reader bled –
The way the paper turned into seaweed
And held fast to the rocks beached in your bed?

There are books we’ll always read again,
Just for the joy of putting off the end,
Knowing that the words – these gingerbread men
In our mouths – will fail every time to fend
Off the fox – the tongue darting from his den –
As he’s the gingerbread man’s fastest friend.

“I’m all gone!” he says, but it’s a joke.
An all-gone gingerbread man doesn’t speak.
And yet, it doesn’t change the fact he spoke
Or the miracle of his triumphant streak.
Each time you read that ending, my heart broke,
And leapt to hear such existential cheek;

Then Dad would have to read it too. So now
Each time I teach my kids an English rhyme
You taught to me, I’ll tell them who and how
You are. I’ll use the present tense, and time
Will have no choice but to accept my vow
To help another incy wincy spider climb

Another spout again. And when I reach
The last few pages of the book and try
To say how your fox ate you too, I’ll teach
My children the first and the last thing I
Was taught by you; that is: the gift of speech
Exists because a mother’s words don’t die.

Tip of the Whistle

Hope it all works. Can't seem to upload Jo's lovely Order of Service at the moment. Will do that later.

Friday, July 8, 2011

Sad News

Dear blog followers Stewart Trainor here:

Many of you will know, but some may not, that my wonderful wife has left us. She died in the evening of July 4th, the day they put a statue up to Ronald Reagan. The irony of it would not have been lost on her. She departed this world, the lifelong champion of human rights and dignity that she had always been. She, however, bore the mantle of champion with a lightness and grace that entirely escaped those who sit in high places and end up on plinths.

Jean has shared her musings with you over these months, and I’m sure you will miss them. She would have thought of them as ‘musings’, nothing dogmatic, nothing didactic in the obvious sense. “I hate those pompous buggers on Front Row discussing how many levels of textual analysis are possible in Middlemarch” she would say, “I bet George Elliot is rotating in her grave”. Her comments came from the heart, and a pretty prodigious processor in the head never weighed them down with pomposity or cant. She was a devoted and courageous campaigner, but never sought prominence. She loved the simple act of sharing, and that’s what she’s been doing with you.
I’ve shared my life with her since she was 15 years old (not even in the sixth form yet – shocking eh?). I can’t wake up to share our tea and toast now. And, like you, I can no longer share her whimsical sideways on look at a barmy world, but I’m not going to weigh down her lightness with heavy clichés about her remaining always with me; she wouldn’t like that. I’ll leave you instead with one of my many fond memories, which of course will remain. It’s one that shows her totally unpretentious nature, alongside her simple joy at a complex task well done.

We were going for a well-earned weekend break in Paris. On the way into the aircraft cabin she picked up a free copy of The Times. We found our seats, sat down, and in the time that it took the plane to taxi out to the take of runway, some 10 – 12 minutes she had completed the Times Crossword. She merely lent across and said “I think I’ll have a bit of a doze now darlin”, and by the time we lifted off she was asleep.

Goodnight sweetheart!

The Funeral will take place at Robin Hood Crematorium, Streetsbrook Road, Solihull, on 15th July at 1pm, with a reception afterwards at Kings Heath Cricket Club.

Friday, June 24, 2011

Watch this space

Had a few ups and downs recently

But watch this space

Thursday, June 9, 2011

First trip, first real job

I went to see Dr Peake last Friday, having waited the statutory two hours, I finally got into see him. He felt my stomach and noted the growth there but said he couldn't really make a judgement until the scan results came through. We discussed treatment options, he doubled my steroids to 4mg a day and he promised to call with the results while we are in Sandringham.

Trouble is I do feel a change for the worst has occurred, as I keep having to sit up when I am asleep, to aid the gurgling in my stomach. Funnily enough it's making me sleep better and I am getting a good six hours of admittedly strange sleep but six hours none the less.

We are getting packed for our first trip, I have written my lists and Stewart is doing his ironing and worrying, so nothing changes there. We will set out at about 11ish once the District Nurses have been, dressed my pressure sore etc. The etc involves hands up bum but we wont go there! We will take in lunch on the way, as usual, and try to be as dreadfully normal as possible. I am really looking forward to it, if a tad apprehensively.

And meanwhile, Sam, husband of Julie, father to Max and Charlie, number one son to me and Stewart has got a job. OK he only came second in the interviews but given that the woman they chose had to travel form Marseilles to Lille, ie about as far as you can go in France, perhaps this was yet another piece of French bureaucracy gone mad. Well done Sam!

Sunday, May 29, 2011

Infinite possibilities

It was the Jersey man telling me that I could fly that did it. Then Pat my lovely friend said why don't you go down to Maumont then. I had read that the civilised French hired out hoists and beds form the local pharmacy, they also provide district nursing services at about 10 euros a day. Then we discussed how we might adapt the entrance to the house to take the wheelchair with a little help from our friends, and how we might get Chris and Denise, our friends from over the road who were going anyway, to drive our wheelchair accessible car to Bergerac to pick us up from the flight from Birmingham. Et voila Guillame est votre oncle.

We will have to move the table out of the kitchen and turn it into a sitting room and pray for good weather so that we can eat outside, we will have to bring one of the single beds down from upstairs so that Stewart can sleep downstairs with me but that is petit bier considering the benefits. So we are getting our canards in a row, we will ditch Jersey as we only made a provisional booking and head for Maumont instead.

Can't believe it might be possible.

Saturday, May 21, 2011

A holiday a month

Well there are three or four hotels with hoists in the UK and we have booked each of them! To avoid disappointment of course and with fingers crossed in case we will lose money if we have to cancel. I inquired about cancellation insurance but it was £1800 for a single trip. Isn't that a great thing about insurance get a real illness and you are persona non grata? Beware health reformers, give up the NHS at your peril. I love it when private insurers phone me on spec and I say "Yes I would be interested" (don't worry I am not turning I just like to test them out) and then tell them about my terminal cancer and all my problems, they suddenly go very quiet and start making excuses, I say "Hello, it is supposed to be insurance, right".

Anyway the plan is Sandringham for four days in June, Minehead in July for a week, Jersey in August for four days and Llandudno in September for a week. It was a revelation about Jersey, I had investigated ferries and they were horrendously expensive and would take all day. Then the man from the hotel called and said why not fly? Apparently the flight staff lift you on to a little chair, haul you up the stairs then transfer you to your airline seat. Your wheelchair goes into the hold. Well all sorts of questions come to mind. Will the little chair be too little? will I be too heavy? but they must have people heavier then me. When we get there we will take taxis, the island is only about 15 miles across for goodness sake.

I have been Googling like mad to find the best restaurants in the locality, Michelin stars and all. Don't think we'll make it to Gidleigh Park in Devon as its 76 miles away but you never know, and in Llandudno there is one just 10 minutes away at a very Welsh sounding place, the Tyddyn Llan at Llindrillo.

All set then to make our way around Norfolk and Lincolnshire, we have been to Norfolk a few times recently and done the usual stuff, so we though we would head North West and revisit Lincoln Cathedral, it's been about 40 years since we were there. WE will visit the rolling hills of Somerset and Devon, the delights of Jersey and the wonders of Wales.

We will eat drink and be merry for who know's tomorrow may never come and we will certainly be filling our boots till it does.

Saturday, May 14, 2011

Hotels with hoists

Sitting in my bed. I am a Google freak. A few weeks ago Stewart, who is normally very cautious, commented that if we bought a portable hoist, we could go away for a few days. I was a bit shocked really, hadn't thought about that possibility. I parked the idea for a while and then sat Googling and just typed in hotels with hoists, well a revelation. Apparently there is an organisation laughingly called The Ceiling Hoist Users Club and they have a list of hotels with hoists. Not only hoists but electric beds, nursing support, doors that flash apart as soon as your wheelchair whispers "open sesame".

OK there are only about three or four of these wonders, plus a few Holiday Inns that I think only have the hoists, two based in Central London, so maybe we could go for a weekend, take in a show, an exhibition and of course a blow out meal in a Michelin star restaurant. Well you have to spend your DLA on something.

So we have booked mid-June, four days in Park House Hotel, on the Sandringham Estate. The house that Princess Di was raised in. We will go half board as it's a good deal, and throws in afternoon tea. We will search for lovely places to visit and pubs for lunch. Our horizons are widened if only over the vast skies of Norfolk and there are two more to try, one in Minehead in Somerset and one in Llandudno in Wales. Not so posh and maybe they will smell of wee and cabbage, but then I suppose, beggars who use ceiling hoists really can't be choosers.

Wednesday, May 4, 2011

Family matters

Another day, another funeral. This time it was my cousin, Betty's, husband Freddie. He was 85 and had been struggling with leukemia but that doesn't get over the fact that he is no more and that he was a laugh and an absolutely devoted husband and father; and that he will be missed so much by his nearest and dearest.

That's what's been getting me at these funerals, I call them my funeral moments. I can't help but bawl when I think about my own demise and how much it will affect those closest to me. Just can't help it, it's too raw and open, sore and painful. I don't feel as if it will happen yet as I am feeling well, but the time will come. But sufficient to the day is the evil therof and so I brush away the tears and wipe on the smile, as much for myself as anyone else.

It was good to see the family though, bits of it I rarely ever see these days, only at funerals in fact. There was cousin Ann. I have no idea why I always refer to her as cousin Ann, it sounds like something from the hillbillies and her husband Brian, who is a dead ringer for Donald Sutherland. Cousin Ann was always held up as a model of virtue and blessedness by my mother because she ironed and sewed beautifully. She had neat plaits and was the first of our family to go to college, unless you count my Dad who at 14 went to Birmingham School of Art. Betty and her sister Joan, who was once the most glamorous woman on the planet, but now lies unable to function hardly at all due to Altzheimers, were 20 years older than me, at least, as I was the youngest child of the youngest child of my Nanny. So it was their children, Peter and Pam and Lou and Glen who I was nearest to in age. I hadn't seen Peter, Joan's son for years, since his grandmother's funeral in fact, but we fell back into an easy relationship and it felt good. Apart from Betty of course, that was it and we dwindle. There were only three of us there yesterday. From the dizzy heights of six children and nine grandchildren (not that dizzy on the grandchildren front actually) of my Nanny's brood we are down to six grandchildren, of which I am the youngest, and we hardly ever see each other.

I took along a few photos, as I have been ploughing through them to find subjects for my oeuvre, terrible burden to have an oeuvre, and it struck me that we will soon be losing the shared memory of our generation. It mostly stops about 40 years ago anyway as we all grew up and moved apart, but there are things I would like to ask my older cousins about what went on, who did what etc and I had better get a shake on as we are a bit prone to dementia and other memory taking conditions. I am going to try to be proactive about this and actually pick up the phone to arrange visits, says she, yes I am. They are family after all and it's all in the pursuit of my art, or should I say heart?

Thursday, April 28, 2011

Hubble, bubble

We went to see Macbeth on Saturday at the new theatre in Stratford. Stratford looked just like it used to on bank holidays when we used to go on charabanc trips; not an inch to spare on the grass by the river; people having picnics and kids with ice cream all over their clothes and faces. I know that's how they used to look because I have been searching out old photos to use as inspiration for my paintings. Mind you that world was black and white then, Stratford on Saturday was a blaze of colour.

I loved the play. I have seen it many times before, of course, but I just got carried away by the whole theatre experience on Saturday. Stewart who "did" Macbeth for O level told me they had missed chunks out and fiddled around with the beginning. I am glad I wasn't so "au fait" and hope Shakespeare would have relished my innocent enjoyment rather than the scepticism of the scholar.

They have restored the new theatre along the lines of the 16th century model, ie all tiered and tall, and the stage is in the round with four aisles leading from the auditorium to the exits. Being a disabled bod I was right on the edge of one of these aisles and had actors tearing around, up and down alongside me, breathing down my neck in fact. It did make me wonder if when they were in the aisles, were they still Macbeth or McDuff or were they anxious actors getting ready to be in the next right place at the next right time. When did they stop acting or that bit of acting when they are actually in character?

Yesterday at Aiobheann's funeral, there was a lot of acting going on I guess. People putting on brave faces. I held it together until Ceri from over the road stumbled tearfully but successfully through a poem. I wept and it was not just for Aiobheann. Lots of lovely things were said about her and that wasn't an act. People kept saying how well I looked and so my act was paying off under the thick stage make-up I metaphorically wear. I wear it to dim sum with my niece; awesome crystal scallops, I tell her I am not afraid and at the moment I am not. I wear it to Easter Sunday outings with my nearest and dearest and indeed I wear it to Stratford, carried with me in my own version of the charabanc trip.

At the funeral one of my caps fell out. What I didn't tell you about Macbeth was that the witches weren't witches but ghostly fay children. I quite liked this as it seemed to follow a theme of the whole play. But if the directors change their minds and decide to go back to the original idea well here I am ready and waiting, toothless and witch like, and no make up required.

Wednesday, April 20, 2011

Just being normal

It's nice, we go shopping; we meet friends, we do the garden. I chop vegetables. We are almost normal. Okay I have to be winched if want to move out of bed, I have to sit where I am put and we can't do anything until the nurses have been but just living is OK, fantastic in fact and definitely, at the moment, better than the alternative.

Tomorrow we look after Harry for the day, another sign of normality, I will bake with him and make Easter goodies and paint with him and he might go and help his Grandad in the garden. Stewart has brought all the nice stuff up from the bottom of our garden, the urns, the big black model flamingos and pots galore filled with Spring. I can see them all from my bed. We open the French windows as the weather is so good and I sit out in the sun for part of my time out of bed allowance. It is simply heaven or as close to it as I will ever get.

And I think I have found my oeuvre! I am working on style, it is likely to be just that, stylised based on the patterns and shapes in things rather than attempting realism; and for subject matter I am going to try and paint some pictures based on incidental moments in my life. I have enjoyed writing about these from time to time on this blog so will see if I can paint a few. I will be scouring through all the old photos and thanking goodness for my Dad's photography passion, although when I was a little girl it drove me mad, all that waiting around posing while he fiddled with light metres and bellowed at me.

We will see how far I get and how much time my lovely normal life allows me to try to make images of my past.

Thursday, April 14, 2011

Smiling through in pictures- my birthday

Some pictures of happiness, grandsons and birthdays.

Charlie with his Grandad and Max with his Nan

Charlie and Max, the most beautiful babies in the world!

Julie and me with a handful

Danny and his Nan are pleased with themselves!

Danny shows off Harry's pirate picture

Julie and Max

Monday, April 11, 2011

Birthday fat arty farty girl

Well I've made it to 62 and as Harry said yesterday, that's nearly 100. We started the celebrations on Friday night, when the twins arrived with their Mom and Dad and Jess and her brood came round for a Trainor type sumptuous feast. It was then one big blur of eating and visits and lovely smiles from twins. Max smiles at you as if you are the most wonderful thing in his life, Charlie as if you are the funniest. They are the most beautiful babies in the world and Sam and Julie are like the cats who got the cream, loving every moment. It is a joy to behold. The best birthday present of the lot; that and when Danny and Harry look at their two little cousins as if they were their most precious gifts as well.

As for the food; we took in lunch at lovely brother and sister-in laws on Saturday, afternoon tea with proper scones, clotted cream and cucumber sandwiches back at ours with friends and family. A massive brunch of kedgeree and bacon and eggs on Sunday, the actual anniversary, shared with all my lovely grandsons, followed swiftly by Julie's delicious lemon tart and lime and coriander truffles made by Diana, Harry and Danny's other Nanny. Talk about an extended family. Finale was posh meals on wheels (ginger chicken and marmalade bread and butter pudding brought over by Chris and Denise in the evening, we sang as we ate, don't know why, we often do!

Apart from the gourmet fare the other major theme, was painting and I had all sorts of art materials`as gifts. All very challenging and technical. So I will start my 63rd year, stuffed to the gunnels with food and love and with bright ambitions about finding my oeuvre and creating something worth keeping.

I have an awful lot worth keeping.

Friday, April 8, 2011


I had to look her name up. I had to look it up every year for the Christmas card, or if I was rushed I would just write to the Butlers from the Trainors. It's a beautiful Irish name, pronounced Eevan. We had it as a question in the New Year quiz one year, her husband, Graham always did the quiz. Aoibheann lived on our road, she always asked how you were, she always cared about the answer.

There have been two cancer stories up our street for the past few months, mine and Aoibheann's. We have sat in our various rooms, feared our fears, bristled our will, taken our medicine. We have just missed each other in our sojourns on the Cancer wards. We have asked after each other and felt our singular sort of empathy.

Aoibheann's story ended yesterday. She had it in her throat, they got it out eventually after bombarding her body and spirit with particularly poisonous chemicals and deadly radio waves, each of which affected her terribly. Finally a viscous sweep of her throat got rid of the cells. She was clear but some delicate thread was cut, she just went to bed for a rest and died. She was on the path to survival but somehow it didn't happen

Our road, which is full of old and new friends who look out for each other, feels damaged, chipped, cracked.

Monday, April 4, 2011

Legs eleven

Right from the start of this cancer marathon, it's been my legs that have told the story. It started you will recall, three years ago now, with me noticing that one leg was fatter than the other; shunted me into a sidetrack where the blinkered NHS saw the only likely cause as a DVT despite the fact the leg continued to expand and then thanks to the French the cancer was discovered right up in the vein in aforementioned fat leg. Once the vein was out the leg continued to be "my fat leg" it got lymphoedema and I had to wear sexy thick compression stockings. I got by though. I could walk and that helped.

Since the paralysis set in a couple of months ago the poor old legs have had another story to tell. For a start they are all floppy and I can't control them at all, or feel them in the slightest for that matter. And because they aren't being moved and I spend my time perched up above them, they are apt to swell to enormous proportions given half a chance.

Well that was the story they were telling until a week ago, but no more! A transformation has taken place. An angel in the guise of a specialist lymphoedema nurse walked into my life and after just four visits I have legs that are almost normal. There they were bloated and literally weeping. Stewart had to heave them in and out of the hoist; we had to pad the wheelchair so that they didn't bruise from being squeezed into the bars; they were probably the ugliest legs on the planet. Then in walks Jane and after she binds them up for a few days in Michelin man type bandages and fits new compression hosiery, I have legs I can almost be proud of; can take out and show to the public in fact.

I did in fact take them out on Saturday, neatly tipped in crocs sandles, and I haven't worn shoes for months; when our friends Mike and Mary from Galway (well actually Mary is from up the road from where I'm from and Mike round the corner from where Stewart lived, but they live in Galway now) took us out for a meal of soup, posh fish and chips and rice pudding. Just what the doctor ordered and my legs and the rest of me filled our boots!

Talking of legs, please will you sponsor my friend, Diana's legs to run a lot of miles in aid of cancer research. She is doing it in my name in the Race for Life. I have added details of how to sponsor her in the column on the right. She is also Harry and Danny's other nanny and like them has a fine pair of pins I am sure.

Thursday, March 31, 2011

The medication hits the spot

Feeling better today as hopefully the medication is hitting home. Doctors confirmed that its probably my liver kicking off and have prescribed steroids and anti-nausea medication. I managed to down a ham sandwich and a custard tart a few minutes ago, and I had a laugh with my friend Yvonne who popped in.

I find that my taste buds are reverting to the 1950s; when Stewart asks what I fancy for tea (tea you see! what we now call dinner and posh people call supper but for the 1950s' working classes, it was definitely "tea"), I eschew any of our more recent culinary repertoire of Roghan Josh's, Thai chicken etc and opt instead for cheese and potato pie, or just egg and bacon. Who knows perhaps it will be corned beef hash next.

It is wonderful when you stop feeling sick and long may it continue up our neck of the woods

Wednesday, March 30, 2011


I don't feel well and I don't like it. I feel I am losing control and Leio is taking over. I suppose up to now I have felt quite well most of the time. I know that sounds strange when I am paralysed as a result of Leio acting at his worst, devastating my life. But up until now all these mets in my vital organs, liver and lungs have been reasonably quiet.

I now have a pain in my side which makes me shout out when I breathe in deeply and I am feeling sick almost all the time. Very unusual for me, but also I have absolutely no appetite. Anyway we have called the doctor and the hospice nurse specialist. She thinks it's probably liver capsule pain, because the liver is covered in something like cling film which bubbles up if the liver swells, it would also explain the nausea and loss of appetite. We will see what the doctor says when he comes and what they can do for it. I may have to go to hospital again; here's hoping I don't and that we can move back into the driving seat and kick Leio into touch for a little longer

Sunday, March 27, 2011


I have a dreaded pressure sore. It's level 3 when the scale only goes up to 4. Nurses have to come in on a daily basis and stroke it and pack it and worry about it. I can't feel it as its below the paralysis line and that is a blessing but in order to stop it spreading I have to put annoying restrictions on my life. I can't sit out for more than three hours; I have to screw myself into a contorted foetal position so that the sore is off the bed several times a day.

Believe me there's not a lot you can do hanging onto the edge of your bed; reading is nigh on impossible although I did manage to finish Sophie's Choice the other day. I enjoyed every word, beautifully written and an ideal book for when you are feeling sorry for yourself! Things could be a lot worse.

I can listen to the radio while on my side and doze of course, that seems to be the option that creeps up on me most often. Haven't managed to complete my next mistress-piece but we will see what today brings.

I would have been marching or rolling against the cuts in London if I could have been yesterday, piling the pressure on those that protect their own interests while making the lives of people with paralysis, poverty and public sector posts a whole lot worse.

Tuesday, March 22, 2011

He's not heavy..

My brother is coming to visit tomorrow. Along with his wife, Andree he will catch a train and get a taxi and arrive at my door. A simple act you may think, but not for him as he has been ill for a couple of years and does not venture out.

So I feel highly honoured that he is making this trip to see me and know how difficult it is for him. I sometimes say that it is a good job my Mom is not alive at the moment. She would be 98 now, and probably not have all her marbles, but she would be driven mad by the thought that both her kids have been so ill for the last two years. This being said we have both, in our way, shown her unique brand of strength and resiliance throughout our very different ordeals.

So Stewart will make the quiches and the curries and me and my brother will feast and chat, keeping our peckers up and putting on a brave face as we were taught at our mother's knee

Friday, March 18, 2011

Filling my life

"You always have visitors" my daughter said today when she rang to catch up with me and moan about the assignment she has to do for her Masters Degree. And she is not wrong. Today it was lovely Kathryn who I have known all my life. She lived up the road and her sister, Mary, went to school aged five with Stewart. Mary married Mike, Stewart's scientific brainy mate; they live in Galway and are a pair of our oldest friends. In the 1950s Kathryn's family and mine and all of our neighbours went on charabanc trips to the seaside and to the glories of the Warwickshire and Worcestershire countryside, or pubs more like. Kathryn's Dad and my Dad went up the Blues together. We had lots to talk about.

Yesterday two old colleagues from my working days, Jo and Ruth, came and we caught up on past and present gossip and fell back into all the old laughter. Last night we had an impromptu St Patrick Day's party. Stewart is half Irish which makes the kids a quarter Paddy. They take full advantage of this as it gives an excuse to drink gallons of Guinness and Bushmills. Luke, no three son, turned up and called his wife, Aleks to join us, Chris and Denise from over the road dropped in. Joe had made a delicious Irish Stew which we managed to stretch to feed everyone and we topped it all off with very strong Irish coffees and raucous singing of Danny Boy, Patrick McGinty's Goat and other classics.

Wednesday saw us going out for a very posh lunch at a local toff's house, Hampton Manor: pea soup with basil ravioli followed by monkfish, mussels, asparagus and seaweed sauce - delicious; we went with Pat our dearest friend. That evening Stewart's brother Graham popped in as did Jess, Tom, Harry and Danny

And then back to Tuesday, a lovely lunch here with Les and Jude, another pair of old friends, in fact aforementioned Mary and Mike, Pat, Les and Jude and Stewart all went to school together fifty odd years ago.

So as you see my life as a poor, paralysed old thing is not so bad. In fact it's bloody wonderful. And on top of this I have painted and find I can do it. I have added a copy of my interpretation of a jug of tulips at the top of this blog. It's only my second attempt since I started painting last week. I am thinking about the next one. Somehow I want to capture this room, my world and all that come and go in it. Not sure how I will do it but I will keep you updated

Monday, March 14, 2011

Grandma Moses

I have taken up painting.It's sometimes a bit hard trying to do it in bed - ooh er missus... I only spend about five hours out of bed each day now as I get tired but I manage to paint propped up against my pillows, swathed in aprons to keep the watery colours from invading the sheets. Chris over the road, who is an art teacher, is giving me guidance. He's doing a good job, after realising that saying just play around with the paint, wasn't enough for someone who hasn't painted since she was 18 and then it was with the dreaded powder paint on sugar paper. Yesterday I moved away from circles and dribbling colours down the paper to an actual picture of a bronze model we have. It's not half bad even though I say so myself but I already have enormous ambitions and want to loosen up, become expressive, find my oeuvre, hit the world of art like Grandma Moses did when she was supposed to be finished.

Perhaps it's something to do with feeling a limit on my existence that makes me want to make a mark on the world. Anyway for now I will just make a mark on the paper and see where we go from there.

Thursday, March 10, 2011

Counting for something

I am tremendously excited. Okay I know I don't get out much these days but the 2011 census has dropped on our doorstep and I will be counted. I won't be a past thing but I will be down as the head of the household, as I always insist on that as a rather pathetic blow for feminism. Mind you with my luck a thunderbolt will hit the house on 27 March and none of us will be counted. Failing that historians in the future looking for trends in education or in disability will count me.I will be an important statistic. But sometimes I don't feel as if I count at all.

I had a terrible day on Monday. I had to go to the Diabetes clinic, which at the moment is sited in one of our local hospitals, an old workhouse that is going to be razed to the ground soon. At present you have to park in the Visitor's car park, which of course we had to pay for, and then find the diabetes clinic. Luckily we saw a couple of chaps in hi-viz jackets who showed us the way. But the route was so long and bumpy, I was in severe pain around where my feeling starts and Stewart worn out by pushing me up hill and down dale. We got there and apart from the fact I had to sit outside to avoid passing out with the heat all went well. I am no longer diabetic.

But I have a problem with my hearing on top of everything else and had been told by my GP that I could just walk in (ha ha) to the walk-in hearing assessment clinic to be assessed. He said it was in the Rehab centre close by to said old workhouse. We went in there, now remember that everytime I get in and get out of our new green frog car, it's an effort for us both and currently I only have a crappy wheelchair on loan from Bourneville Ward. I am by now slipping out of said wheelchair and very uncomfortable. We go to the reception in the Rehab centre, they say that the hearing assessment centre is at out-patients back at the hospital. We duly go over there, get ourselves out of the car only to find that it is elsewhere on the hospital site. By this time I am absolutely exhausted. We go round to the centre, which is tucked away down a snicket. We can hardly manoeuvre the car round it and there is no disabled parking at all. We park right outside where it says "keep clear". We struggle to get me out again and I wheel myself up to reception to ask if I can avail myself of the walk-in clinic, I even find the energy to joke and call it the roll-in centre for me. I am told that the walk-in clinic only operates from 9am to 12.30pm and that as long as there is an audiologist available I will be seen if I return the next morning. I ask if I can make an appointment then and she says that they don't make appointments for hearing assessments. I burst into tears much to the embarrassment of all those sitting and waiting.

I have reported this chain of events, in no uncertain terms, to the Chief Executive of the hospital. Because I am known to her and to every other bugger at the top of the NHS, a special appointment has been made for me next Monday. So I count, but what about the other poor sods who don't or at least only will on 27 March.

Sunday, March 6, 2011

The Egg

Just found this on a blog called Midnight Musings. I love it except of course it would definitely have been a woman...

The Egg

By: Andy Weir

You were on your way home when you died.
It was a car accident. Nothing particularly remarkable, but fatal nonetheless. You left behind a wife and two children. It was a painless death. The EMTs tried their best to save you, but to no avail. Your body was so utterly shattered you were better off, trust me.

And that’s when you met me.

“What… what happened?” You asked. “Where am I?”

“You died,” I said, matter-of-factly. No point in mincing words.

“There was a… a truck and it was skidding…”

“Yup,” I said.

“I… I died?”

“Yup. But don’t feel bad about it. Everyone dies,” I said.

You looked around. There was nothingness. Just you and me. “What is this place?” You asked. “Is this the afterlife?”

“More or less,” I said.

“Are you god?” You asked.

“Yup,” I replied. “I’m God.”

“My kids… my wife,” you said.

“What about them?”

“Will they be all right?”

“That’s what I like to see,” I said. “You just died and your main concern is for your family. That’s good stuff right there.”

You looked at me with fascination. To you, I didn’t look like God. I just looked like some man. Or possibly a woman. Some vague authority figure, maybe. More of a grammar school teacher than the almighty.

“Don’t worry,” I said. “They’ll be fine. Your kids will remember you as perfect in every way. They didn’t have time to grow contempt for you. Your wife will cry on the outside, but will be secretly relieved. To be fair, your marriage was falling apart. If it’s any consolation, she’ll feel very guilty for feeling relieved.”

“Oh,” you said. “So what happens now? Do I go to heaven or hell or something?”

“Neither,” I said. “You’ll be reincarnated.”

“Ah,” you said. “So the Hindus were right,”

“All religions are right in their own way,” I said. “Walk with me.”

You followed along as we strode through the void. “Where are we going?”

“Nowhere in particular,” I said. “It’s just nice to walk while we talk.”

“So what’s the point, then?” You asked. “When I get reborn, I’ll just be a blank slate, right? A baby. So all my experiences and everything I did in this life won’t matter.”

“Not so!” I said. “You have within you all the knowledge and experiences of all your past lives. You just don’t remember them right now.”

I stopped walking and took you by the shoulders. “Your soul is more magnificent, beautiful, and gigantic than you can possibly imagine. A human mind can only contain a tiny fraction of what you are. It’s like sticking your finger in a glass of water to see if it’s hot or cold. You put a tiny part of yourself into the vessel, and when you bring it back out, you’ve gained all the experiences it had.

“You’ve been in a human for the last 48 years, so you haven’t stretched out yet and felt the rest of your immense consciousness. If we hung out here for long enough, you’d start remembering everything. But there’s no point to doing that between each life.”

“How many times have I been reincarnated, then?”

“Oh lots. Lots and lots. An in to lots of different lives.” I said. “This time around, you’ll be a Chinese peasant girl in 540 AD.”

“Wait, what?” You stammered. “You’re sending me back in time?”

“Well, I guess technically. Time, as you know it, only exists in your universe. Things are different where I come from.”

“Where you come from?” You said.

“Oh sure,” I explained “I come from somewhere. Somewhere else. And there are others like me. I know you’ll want to know what it’s like there, but honestly you wouldn’t understand.”

“Oh,” you said, a little let down. “But wait. If I get reincarnated to other places in time, I could have interacted with myself at some point.”

“Sure. Happens all the time. And with both lives only aware of their own lifespan you don’t even know it’s happening.”

“So what’s the point of it all?”

“Seriously?” I asked. “Seriously? You’re asking me for the meaning of life? Isn’t that a little stereotypical?”

“Well it’s a reasonable question,” you persisted.

I looked you in the eye. “The meaning of life, the reason I made this whole universe, is for you to mature.”

“You mean mankind? You want us to mature?”

“No, just you. I made this whole universe for you. With each new life you grow and mature and become a larger and greater intellect.”

“Just me? What about everyone else?”

“There is no one else,” I said. “In this universe, there’s just you and me.”

You stared blankly at me. “But all the people on earth…”

“All you. Different incarnations of you.”

“Wait. I’m everyone!?”

“Now you’re getting it,” I said, with a congratulatory slap on the back.

“I’m every human being who ever lived?”

“Or who will ever live, yes.”

“I’m Abraham Lincoln?”

“And you’re John Wilkes Booth, too,” I added.

“I’m Hitler?” You said, appalled.

“And you’re the millions he killed.”

“I’m Jesus?”

“And you’re everyone who followed him.”

You fell silent.

“Every time you victimized someone,” I said, “you were victimizing yourself. Every act of kindness you’ve done, you’ve done to yourself. Every happy and sad moment ever experienced by any human was, or will be, experienced by you.”

You thought for a long time.

“Why?” You asked me. “Why do all this?”

“Because someday, you will become like me. Because that’s what you are. You’re one of my kind. You’re my child.”

“Whoa,” you said, incredulous. “You mean I’m a god?”
“No. Not yet. You’re a fetus. You’re still growing. Once you’ve lived every human life throughout all time, you will have grown enough to be born.”

“So the whole universe,” you said, “it’s just…”

“An egg.” I answered. “Now it’s time for you to move on to your next life.”

And I sent you on your way.

Monday, February 28, 2011

A man in every port

I am back in hospital! A great big, well about 3cm, hole opened up by the fancy portacath I had inserted just above my right boob. It was put in about four weeks ago to simplify the administration of Yondelis, the highly expensive sea squirt. I have decided not to have the chemo so it is pretty redundant and in fact not very pretty as said boob is bruised black and blue even after four weeks. The hole oozes vile caramel stuff, like yucky coloured gloss paint. You can see the actual tubing below the surface of the wound once it has been cleaned up.

This afternoon I went down to Dr McCafferty's world again, Ambulatory Care, to have the port taken out. He wasn't aware it was infected so called one of his colleagues to come and see me. Didn't catch his surname but his first name was Garth. Now McCafferty is not a bad catch himself, quite easy on the eye, very funny and a great conversationalist but dearie me, Garth! I can't remember if the cartoon hero of the 50s and 60s was a hunk but this one, my goodness me. He put that other famous doctor, George Clooney, in the shade, more real looking somehow. He examined me, pressed my boob and looked down into my eyes. The monitor that was measuring my blood pressure immediately shot up. He gave his advice, the wound would need a corrugated drain, not very romantic I know. He flashed me a smile and modestly went on his way.

McCafferty set about his task with Marvin Gaye singing in the background. He whipped the port out through the wound, painlessly, flushed it out, then applied the corrugated drain. It was just like a corrugated roof tile, or do you remember those cheap penny sweets, spearmint, pink, we had, again in the 60s? McCafferty had never done a corrugated drain before and was bemused by the safety pin that came with it. It was in a sterile pack and the penny sweet needed securing with something so he assumed that it had to be pinned through my skin. On reflection it could have been put there by whoever it is that is keeping a voodoo doll of me and using every opportunity to pierce and stab me. McCafferty asked if I need a local anaesthetic but as he was standing with the pin ready to go in, I rather unwisely said let's give it a go without. Well I tried to squeal softly but if you are ever in need of a pin shoved through your boob then say yes to the needle. He gave me a jab straight after and all was well.

We jabbered on through the whole procedure about people we knew in the NHS, the new hospital and the comparison between the French and the UK health systems. He also talked about my infections and he said that the speed that the urinary tract infection had come on and the severity of it, it was likely that I had had septaecemia. It now seems I will be in for a few days while I am on oral antibiotics. It's not just the wound, I also have a chest infection that can render me speechless (a great relief to some no doubt) and wheezy for hours. He said all these infections were probably a hang over from the aforesaid septaecemia.

When I do get home I will be crossing every digit I can, in fact I can easily cross all four fingers on each hand, and I will be calling on all the gods to ensure that we will have a longer stretch where we can adjust ourselves better to the new me.

Thursday, February 24, 2011

That time of year again

I can change my profile again, today is our 43rd wedding anniversary. I have got through another milestone and beaten the odds again. 43 may be a prime number and you all know I have a thing about primes. On Tuesday next week it will be my third son, Luke's, 31st birthday, another prime number but I have enough problems without developing a full blown prime number phobia. I blame our old friend, Rudy, who used to teach me telephone numbers by breaking them down into primes.

As I type the two most gorgeous twin boys in the whole wide world are grizzling in the background. They arrived for a visit from France yesterday and they are miraculously beautiful. This is their first time abroad, they are two months old and they are meeting a lot of their relations for the first time.

Two sets of lovely friends have just left after making me laugh all afternoon, and we have booked to go out to lunch with one set, Sue and Mick, a month from today, at a posh restaurant in Oxfordshire.

On Saturday we plan a big birthday celebration for Luke, when the whole family is together now, we add up to 16. So our feast will have to be eaten on laps (we have taken away our stretchy dining table to house my electric super comfortable hospital type bed). I will make a trifle; starters will be spring rolls, nems and some spicy skewered prawns made by the birthday boy; main course Beef Rendang made by Jess and Tom. Julie and Sam have bought wine and lovely smelly french cheese.

Now the babies are quietening down and there is a lovely golden twilight outside. I have a house full of flowers sent from friends.

I am a very happy long-married woman

Friday, February 18, 2011

White water rafting!

This is the full technicolour version of the last blog, so hold onto your hats.

I got home on Tuesday 11 February, unfortunately it was at about 5.45 in the evening by the time the transport got me back. So after all the local services had shut down for the day. We failed, therefore to make the vital link up with the local services, they had been round that afternoon but, of course I was caught in transit. A lovely evening was had as Jess, Tom , Harry and Danny came round. Harry and Danny dived into a new bag of dressing up clothes and other toy delights donated by their beloved Aunty Pat and Stewart hoisted them around on our splendid new hoist. We had our dinner, a lovely spicy lamb concoction and then set about sorting out the medication I needed only to find that we had the wrong dose of the injection I have to take for blood thinning and we did not know how much insulin I should be taking as that had got lost in the loop (I became temporarily diabetic due to the massive dose of steroids I was taking, all gone now thank goodness. I failed to test my blood for sugars as the machine I had was useless and felt a bit dumped by the services. We improvised.

We decided to try to get me from chair to hoist to bed, and succeeded second time around. Stewart washed me, and I will spare you the details of that.

Then at 4pm I burst into tears, it suddenly hit me that I was paralysed, would never be able to move my own legs again, I was doubly incontinent. I could never go upstairs in my own house again. We would never be able to go to our house in France again, far too many stairs, and you all know how much we love that house.

The care I had received on Bournville ward in the cancer centre was second to none, they all became my friends and the treatment was excellent in every way but one (in fact it gave me great comfort that if the worst came to the worst and I had to die in the hospital rather than at home or in the hospice - sorry can't help but think a la Henry Higgns and Eliza Doolittle: in hospital, home and hospice, hurricanes hardly happen. The one exception to the excellence and I didn't particularly expect the nurses to do it, no-one ever talked to me about the paralysis and what it meant for me and my life hereafter.

Stewart came over and I wept and wept and wept. Once I could talk again and was calmer, I said to him: we have been dealing with this dreadful blow and we have coped magnificently in our different ways. He had been brave and then set about investigating every disability aid available, buying us our sooper- dooper new frog shaped, wheelchair friendly car and staying up till the early hours moving the furniture. I had been brave and then bizarrely and perfectly happily started planning my funeral (all done now in my head) and checking my will.

So we set about what needed to be done now about all the medication and tying into the local services. I found that all this cathartic crying has stripped me of something. I had to write everything down step by step. Have breakfast, the next step is test blood sugar and I know my machine is useless, so ask Penny over the road goes down. Stewart pops over the road and she comes like an angel in disguise, gives me the test and the lovely simple reading. I probably look a bit red-eyed but she doesn't mention it. Later I find typing a simple email difficult, very very slow. The carers are coming in at 8pm, they arrive exactly on time and do a beautiful job and I know that is all going to be well in that department. I am out in my wheelchair. Luckily the District Nurse has called and will come round at 11pm. That goes well but again I have to be very precise about what she is saying and write everything down rather manically. We have lunch and Stewart decides to pop down the shops. He is out for about 15 minutes, the GP calls and I discuss the medication I need and book a visit for the next day, as the nurse had advised me. Our friend Mick phones we discuss a visit, Stewart phones to check I am OK.

Then all hell breaks loose. A urinary infection I apparently had been harbouring sends me into a completely confused and delirious spin. What a day to choose to have one of those. I have heard about these things but never imagined it could be as bad as this. Basically I moved into a state where I was sinking into my last breath and dying through all sorts of terrifying images, including turning into a skeleton with my skull whizzing around. Then I was granted one more breath and rose painfully back to life. I was clearly also having panic attacks and hyperventilating, Jess tells me I turned blue at one point.

Stewart came home shortly to find a mad woman who told him that she had died and come back to life. Jess rushed over as she had called the house to check how I was, they called all the frontline services and finally 999. Stewart tells me that it was like watching someone have contractions, and he should know.

The district nurse and the on-call doctor both told me I probably had a urinary tract infection, I thought they were mad, no I was dying and living, dying and living. Stewart tried to get me to have a dextrose tablet thinking I might be hypo and to take the antibiotics that the Dr had prescribed but I flatly refused and thought they would help to kill me. Every time Stewart or Jess tried to stop me flayling about or even tried to hug me, I would wrestle them away. Anyway I get shunted off to A and E. In a moment of lucidity I asked what is best to control a panic attack and I insist they take me to Bournville Ward, although they are not allowed it has to be A and E. I ask if I can have a sedative, they say not untill I have been assesed.

Then the illusions got worse and worse. Prior to this as I died I had to keep shouting out I love you, I love you, I love you, over and over again. As I descended to my last breaths I composed my features into a smile so I would die looking happy. I muttered about the funeral arrangements I had started to make. On the way back up to life, I started by shouting out breathe, breathe, swallow over and over again and then as I came back I shouted my name hundreds of times, Stewart's name, all the kids and grandkids, then things in the room. All so I could check my brain was back in full working order. When I was seeing myself as a skeleton I was whizzing my head around and grinding my teeth.

As it worsened in A and E, the whole dying and coming back to life became a perpetual nightmare. I strangely thought that I would rot in my wheelchair and that then the wheelchair would rot and then the whole world would have to rot. This lead me to believe that I had to get everyone to breathe at the same time, so I was bellowing to everyone in A and E that they must breathe now. I refused to answer the doctor's questions: what day is it? Who is the prime minister? I had accused her of being a nurse, well she was wearing dark blue, Jess told me I was undoing decades of good work fighting against gender stereotyping.

At this point I decided I had to go through the whole of my life again, presumably to reach some sort of end. Unfortunately I missed out my childhood and moved straight to my relationship with Stewart, I was shouting loudly all sorts of sexy invitations to him until he wisely got me off the subject.

I then decide I would go along with all they were doing because they hadn't got a clue, I think I became quieter and more co-operative.

Jess had been contacting Bournville Ward and insisting to the Emergency Doctor that I be taken there, they also managed to get a sedative shot into me.

I ended up eventually on Bournville sans hallucinations but very, very groggy. Luckily they had a sidebay free, which meant Stewart could stay with me all night. Jess came back the next day to relieve him and we had a lovely time talking about the family, her ambitions: she wants to become Camilla Batmangelidh (sp?).

When Stewart got back I got him to tell me what had happened from his point of view, and gradually pieced it all together into some sort of reality. I gradually started to feel less whoozy.

I was moved back to the main ward and surprised the patients and staff that I had returned so quickly. The doctor came, luckily the lovely one. I asked if what had happened was symptommatic of a urinary tract infection and she said absolutely. I asked could I have a brain scan as I was worried it might have gone to my brain.

That happened the next day, dead simple CT scan. They found no sign of mets but a small, fresh brain bleed caused by all the thrashing about. As I was taking blood thinning medication they had to be doubly careful.

I stayed in for 5 days, a further scan on the 5th day showed shrinkage of the bleed and they were less worried. I still nearly didn't make it out and had to discharge myself as inflammatory markers in my blood were high and had grown quite dramatically. All they wanted to do was watch me for one more night - I had heard that before - and give me a course of the same antibiotics. I said we would do that better at home as Stewart would be watching me like a hawk.

So home I went, ready to enjoy the rest of my life. Yesterday we had a fantastic day with Jess and Stewart- he went off and did his own shopping. Lunch at Wagamama's, shopping till Jess dropped in John Lewis and Marks and Spencers. Today was Waitrose, a very practical meeting with Physios and OTs, I am going to do upper body strength exercises and they will get me referred to the lymphoedema service. Denise, our good friend came round for a chat and we have just had pork belly for dinner. So on with the rest of my life and no more white water rafting please.


Monday, February 14, 2011

Keep watching

Sorry folks won't be able to update the blog until Wednesday at the earliest now. Quick resume so you know the jist.

Went home last Wednesday, all fine
Thursday developed dreadful urinary infection, delirium, total madness
Back in hospital
Friday whoozy but better
Had ct scan on brain, no mets but showed recent bleed caused by urinary madness
They need to observe for 5 days
If I become confused they operate- very simple bit of black and deckering (drilling)

All a bit dramatic and it's a good job I have a good book on the go: Sophie"s Choice. Not a cheery tale I know but I am loving every minute of it

Last night we had a party on the ward for our friend Chris and so I am making the best of a bad job as ever.

Friday, February 11, 2011

Watch this space

Have promised a blog update. Bear with me it will be posted by Monday.

I am fine

Watch this space

Have promised a blog update. Bear with me it will be posted by Monday.

I am fine

Monday, February 7, 2011

I nearly had my skirt on and was out the door

Washed, packed up, all in place then they found some blood in my poo. Poo indeed.

Seems I've had too much laxative and too much blood thinner and so I have to stay, hopefully only till tomorrow.

We will get there

Sunday, February 6, 2011

I used to...

I used to run like the wind, I can still feel the spiky grass between my toes, the rush to the tape

I used to go like a train, dance like a demon

I have shopped till I dropped, I've mopped, plopped and slopped

The books, the laughs, the winces, the wit, the love, the lust, the politics, the dreams

They happen in my head and heart not my legs. They still do.

Escape still looks god for tomorrow.

Wednesday, February 2, 2011

Getting out

Today we have a meeting: me, Stewart, Jo the OT manager, Monica the discharge manager and Maureen, the social worker. All on first name terms here. I am no stranger to meetings. I have asked for criteria, I think I have my head round it, and if I don' t god help any other poor bugger struggling with this.

It is an assessment of what I need. A plan will emerge and budgets will be discussed. Trouble is they have to manage me and I have set them a deadline of Friday to be out, they pale, they twitch, so they should.

Not only that they have my political standpoint to reckon with and I have never been good at compromising that, nor will I be. It comes down to whether you are covered by the social or the health. Social you pay, health you don't. I get Disabled Living Allowance now so I am happy to give them that. Beyond that I am not happy.

You see I believe that even Georgie boy Osborne, or dodgy David Cameron ( god you'd never go out with them would you?) with all of their millions should not have to pay for care when they become immobile and doubly incontinent. As long as we have screwed them for every penny of tax on exactly the same terms that we pay, no fancy accountants, no respectable fiddles. Not going to happen I know but we can dream.

So what do I need, simple really, I want Stewart to become the fastest hoister in the west, I don't want to have to wait for some other bugger to turn up if I want to go on the bed or into a chair. I want a daily health check on my vitals and my pipes. Frankly I think we could do the rest but I may give into a personal comfort visit a day just so Stewart doesn't end up doing all their jobs for them. Apart from that we may get a cleaner but that was always the case and then there's the asses milk and good food guides. We will cover those. Don't think the rest will break the bank and if they haven't got it sorted by Friday, I will, it's what I do. To get out we will get a car with ramp and winch, oh how sexy.

And to help matters I find I am quite whizzo in a wheelchair. I was tazzing round the ward yesterday and my famed lack of ability to do a three point turn is a myth engendered by others.

Tuesday, February 1, 2011

Taste the difference

I am carving my own gastronomic fate here in Bourneville ward where there is no chocolate. You will have gathered that food plays a big part in my life as I have eulogised over the best gastronomy of France, Italy, Wales even. When I got the death sentence I took it on myself to make every meal, a meal to remember; quite a challenge for those around me. I have planned trips, scoured guides. Thank goodness the chemo didn't alter my taste buds and thank goodness my nearest and dearest like to eat too. And we are catholic in our tastes so Dad's Lane fish and chips and the pensioners' egg and chip special up the co-op feature in my drooling.

Being in hospital does not suit these foodie passions one little bit so I am on hunger strike from their slop. I have tried to down it, tried to make the best of a bad job, but it's no good, it's not worth the candle. I don't have a massive appetite as I am hardly using up loads of calories so my needs are small in size but huge in expectations.

I eat their breakfast, a few oranges and a weetabix. Then whoever is visiting at two is tasked with bringing me the loveliest, freshest, fullest flavour bursting sandwich they can find from Pret or Philpotts. Ok I will do with M and S at a push. Trouble is they all have busy lives and Stewart just doesn' t have a sandwich instinct unless its ham or cheese with none of that filthy mayo. I adore filthy mayo mixed with any other fancy filth you can throw at it. Luke is my best bet if he can get his act together.

Then for dinner I want more small explosions of flavour. Last night I ordered two perfect lamb chops, just on the turn re bloodiness and with foccacio bread. This was from Stewart and he managed to pull it off with magnificence. I am sure I would have overcooked them in his place but these were superb, drool, drool. I was grunting orgasmically all the way through.

I have read about this capsule eating they go in for in New York, Paris etc when for a ridiculous amount of rich persons money they can order perfect little meals that arrive by courier at exactly the right moment. Yes this is what we want. Why can't I pick up a menu from one of my favourite eateries, choose a bit here and a bit there and have it delivered to Bournville ward. An opening here for someone although I am not sure the Market is huge.

So my taste buds are working in anticipation of that sarnie and for tonight I have asked Stewart to rustle up more foccacio, half to mop up a small tomato salad and the other half slathered in the muit-cuit fois gras entiere that we just happen to have in the fridge, followed by raspberry jelly, low sugar of course. Bon appetit.

Friday, January 28, 2011

Bedside manners


Jess: how you going to wash your hair Mom?
Me: in a bowl you just splash a load of water on and give it a good rubbing. It's all ever did when I was a girl
Luke: is that before you used to spread the beef dripping on?

Me sitting on a bed pan at visiting time nothing happening: is that me or Danny?

Me to social worker: my husband has been endeavouring to meet my personal needs for 42 years why change the habits of a lifetime?

So the legs are worse, no feeling at all from top of thighs down. Doubly incontinent too and that's a breeze in the main. I can wash and brush half way, including the hair scrubbing and beef dripping application and then the nurses take over. They do it tenderly, with humour and it's really rather nice.

Yesterday I went to the gym and managed to shuffle from a slidy banana, ooh er missus, onto a wheelchair. So that was progress.

Social worker and OT have started the discharge process and so beds will be arriving and carers lined up. I have to prove I am a medical case to get funding but that should not be hard.

To say it has all been disturbing is an under- statement. To have totally senseless stumps sticking out of you and not being able to twitch a toe puts a very different perspective on life and knowing that this is your life now no going back. But I am coping friends I am the cheeriest on the ward. As I said yesterday I am still me, I can write a symphony, I might just try and publish this blog and become a strange, quirky, commentating superstar for a while. Who needs legs?

Wednesday, January 26, 2011

A good woman

So where are we? Well I am probably in exactly the same spot that I was in yesterday as I can't move off it. It is very disturbing to not be able to move your foot or lower leg when you feel you might appreciate an exciting change of scene. The physio says to send the signals down as the muscles need to remember the twitch but I get no twitch. I really need to be able to shift my bum but those close to me know that was always the case. It is a priority though and I will let the physios try to help me today.

I am eternally grateful for being a brummie at the moment. It wont mean much to you if you are not one but the nurses and porters with their quips and normalness are keeping me going. I quip back and I am me again. And we have a broad Dublin night sister who Is amazing, she is super efficient and puts the doctors right and she will gossip and exclaim and ask us about ourselves. She keeps proclaiming that we are good women and she may have something there. We have our whitterer who keeps sloping off to blow her hair and a couple who could do with cracking their faces but generally we endure with grace. Last night we had a spiritual moment. Those of you who read my blog will know I don't go in for such stuff but the lady in the corner who had had a really bad day had about 18 of her family around, they had her in stitches most of the night and stayed on after closing time. Then this lovely song drifted across the ward, all in perfect gospel harmony. Ok god did get a mention but it was all about being together in love. It hit the spot albeit a bit weepily.

And now I am the proud bearer of a portacath, inserted yesterday afternoon after a whole day of nil by mouth. A trip to the new hospital over the link and then to another gaggle of people ready for a laugh and to treat me like me. Scots this time so further back into my history. Apparently they sliced and inserted but I was off with the fairies and didn't feel a thing. Itsbecoming the story of my life.

Saturday, January 22, 2011

Keeping me on my toes

Well I don't suppose you could call it a boring couple of days. Thursday after a visit from the lovely hospice nurse who sanctioned wine with relish we went off to lunch at our favourite Birmingham eatery, Simpson's. This was the venue for our memorable anniversary meal last February. This time we were testing for wheelchair compatability alongside all my other criteria. It fared quite well, you have to park in a special place and take a back entrance but it's little hardship and they were all lovely and as subtle as possible. Set lunch for £35 including wine and all sorts of bits and pieces was great value and absolutely delicious. I drank the lion's share of the wine and I put the slightly wobblier legs on return down to that. Visitors completed the rest of a lovely afternoon including Harry who wanted to check on every change we had made to the house and all about me not being able to walk, how did I go to bed , the loo etc. Good questions as it happened as by the time they had all gone I couldn't. Legs just went completely.

We somehow managed that evening but it was all very perilous and on Friday it got to crisis point. I had appointments to go to but couldn't get up off the chair at all. Couldn't get to the loo, couldn't do diddly squat that entailed standing up. So 999 call and back in hospital, bed ridden at the moment. Will have MRI scan today, yes a Saturday! And we will take it from there. Still hoping it's not permanent but they are delicate old nerves down there.

So it's all keeping me on my toes if only metaphorically.

Tuesday, January 18, 2011

Our house in the middle of our street

I love our house. It's just about Victorian, it is long and thin and goes up quite a way. When we bought it we couldn't afford it and jumped from paying about £30 a month, (I know those were the days!) to about £300 and then that nice Osborne forerunner Nigel Lawson I think it was, put interest rates up to 16%. We had three kids, one job and Jess was on her unbidden way. We lived on lentils.

We have knocked bits down and added bits on over the last 30 years. When we started our business and ran it almost alone we bought original art and pottery. Two years ago we changed style and painted the walls Vert de Terre or some such Farrow and Ballness, Stewart adapted Ikea Billy shelves into posh looking display vehicles for our books and all the new pots and old stuff from my Mom's.

So this is my world now and I am grateful for it. I sit and just soak in the colours and the mix of bits and pieces, the lovely mysterious paintings. The photos of Pete my dog from about 50 years ago, the lovely cracked art nouveau vase my Mom gave me filled with fresias when Jess was born. The monk in the rain. I can do no other. It could be worse.

Sunday, January 16, 2011

Where from here?

I try to keep this blog entertaining, real but with a smattering of irony, a glance to the past, a smile or a tear. I enjoy making the patterns in the writing, the dom - de - dom. It is about me having cancer however and a particular bastard to boot. It's been tough of course getting the diagnosis, reading the stats, telling the kids, having the surgery, the radio and the chemo but I have kept to my own "let's keep cheery " brief.

But let's be honest I am struggling now to be very cheery about the fact I can hardly pick my legs up and that last night I had more pain than four labours rolled together - even if mine were famously easy. Ok today the pain is easier so that is good, in fact I am not in pain as we speak. Last night was a flare up from the radiotherapy on my equine vestige, of course it was, why should I ever have such pain again? Oh yes there is the cancer. Readers will also have picked up that I am a celebratory slob. I like nothing better than doing nothing but read and do the odd crossword but even I am jacked off that I can't straighten my innumerable cushions the way I like them or put my book away where I think it should go. I also find that I don't like telling people what to do or asking for help with simple things, I have only one abiding religious creed - don't wake people up when they are asleep ( will have to convert the twins) so I lie around worrying about asking for things in the middle of the night or when I want a swig of morphine .

I quite like the wheelchair we bought yesterday to get me round the shops, I liked being at eye level to the stuff and not having to make any effort and I have been reminded that love is about looking after as well as looking at and I thank my lucky stars that me and Stewart know and love each other and have no modesty whatsoever.

Tuesday, January 11, 2011

Horse's tail

Doctor's entourage just been, apparently my spinal column is just fine, well as fine as someone with lung mets etc can be. But and there is always a but, the cluster of nerves at the base of my spine, commonly called the Horse's tail has cancer deposits and that is what's causing the problems, so same difference really. Treatment will be 5 doses of radiotherapy to the place where my tail would be if I was a horse. Then I will start the sea squid aka yondelis so the fun begins. The physios will have a go at me tomorrow to get me on my feet again. It is hoped the radiotherapy will at least halt the paralysis in it's tracks and best case scenario turn me back to normal, if such I ever was. With a fair wind I should be out tomorrow or day after.

Noises off

Managed to sleep, or more accurately not sleep, lying down last night. That is good news as the pelvic pain is much better and maybe reacting to the steroids. Also I am getting a bit more feeling in bits that were going numb, even managed a hasty pelvic floor squeeze, not at the banana peeling stage but whenever was I? before Sam perhaps but I never tried it.

Lack of sleep due to aforementioned steroids but also to whoever was shovelling coal or similar in the night and doing the heavy duty polishing. Some bloke was sounding off very loudly at about 4 o'clock and it was a toss up whether I shot him or joined him on a rooftop protest. The noises have continued this morning in the MRI scan machine but considering my scary back and my claustrophobia it wasn't too bad. Let's hope the results are the same but until then bed rest and lots of reading.

Monday, January 10, 2011

Hospital again

Legs collapsed this morning and I fell quite elegantly onto our front garden. I was on the way to the scan so now they know what is wrong and have me back in hospital. I await enlightenment and some sort of hope that they can get my legs back. Till then it's lots of close holding up by Stewart and Joe and warm hugs and kisses. I can feel those at least. Will keep updating with news.

Friday, January 7, 2011

Hippy, hippy shake

Here we go, new year, new symptoms. Not good I fear. For the last few days I have been tossing and turning in bed and staggering about during the day. No this is not due to the one night break at Ynyshyr Hall in Wales we enjoyed on Wednesday/Thursday. We couldn't afford the full two day jobby but enjoyed our one day of hedonistic heaven in one of the most beautiful spots on earth, imbibed the complementary sherry and the de rigeur aperitif, various wines with the Michelin starred utterly delicious dinner etc. But no my staggering is not due to the booze or my tossing and turning to the four poster, sinkingly soft bed. I have horrible aching pains across my pelvis and hips and down into my thighs and my legs have gone all shaky and sort of numb. Not good signs, in fact classic signs of spinal compression and impending no useful legs or rude, toilet bits doom.

I am due a scan on Monday which will look at me very closely and I have told my doctor what is happening so I suspect next week may see, not a visit to the new twins as planned but another week or so of visits to my best friend the radiation machine. That and the dreaded sea squid; thank goodness I got the pressed fois gras with beetroot mousse in, in Wales, before the cancer menu recommences. It was perhaps the best starter I have ever tasted, and I have had a few in my time. It's the endings I find I am not so good at.

Saturday, January 1, 2011

Prime time

2011 is a prime number and I don't like them, somebody has made up a name for such irrationality: Perittosarithmosphobia, and I have a mild case of it, nowhere near as strong as my arachnophobia which is firing up at the moment as our Christmas tree is doing that curling downwards thing that they do after a couple of weeks in the corner by the radiator, looks for all the world like a large collection of tarantulas. It will have to go.

I checked whether 2011 was a prime and discovered that I was born in a prime year too but that none of my children or their children were. Must be some significance there for a perittosarithmosphobic. The whole Happy New Year thing is weird for me anyway but we had a lovely evening doing absolutely nothing and having met Max and Charlie now there is a great potential for happiness in 2011, added to Harry's wide eyed look and Danny's cheeky, grinning shrugs. They are a handful though, literally so we will be going back very soon to lend our old hands and keep our mouths firmly shut about funny French ways (don't take them out for a month..sacre bleu!).

As for resolutions just two for me: stay alive and don't buy anymore cushions. Happy 2011 everyone and may it be a prime time for you all.