Writing

I know I’m writing rather infrequently here.  One reason is that I am writing very frequently elsewhere,  I wake up with the novel in my head and just have to get it on paper.

I wrote a novel long ago as my millennium project.  It got rejected in lots of places; I finally filed the file of rejections up in the loft last week, I hope the floorboards can take the weight.  The last thing that happened with the novel was that I got a literary agent.  After about six months the agent asked me for some money but I wrote back that I didn’t have any, mostly because I didn’t. He kept sending letters saying how many publishers he’d submitted the novel to and I kept not giving him money and then the police rolled up on his doorstep and arrested him because he was a fake literary agent and some of the authors he had asked for money gave it to him.  Amazingly poverty was my protection.

By the time I found out that my literary agent was a crook  I was deep into the sequel.  I tried to go on with it but the enthusiasm had seeped out as the constabulary weighed in.

Some years down the line, re-reading my own work I could see where the faults were.  I have taken that knowledge and used it in this novel.  The one similarity between that novel, the one I’m writing and the sequel I didn’t finish is that they all sound like me, if they ever get published and you are a regular reader of this blog, you’ll like them because it’s all just me.  The column I used to write in Dolls House World was called Just Jane and it absolutely was.  I am either stunningly consistent or a one-trick pony.

The other reason I haven’t posted much is that I keep having bad days of paralysing worry.  I have spoken to the cancer nurse who said it is common for people to imagine the cancer is back again whether they have earache, headache or a blister.  Knowing that does not stop me having bad days.  I’ve had bruises that I instantly thought were leukaemia, tiny specks of blood that I thought were my insides going rotten and dropping out and broken fingernails that were sure indicators of oh dear here we go again.  I do think I’ve had a bad experience; not everyone vomits blood post operatively, in fact I think it’s unusual.  Most people are out of hospital in three days and do not keep going in and out for a fortnight. Most people do not have four holes and a long incision in them. Many people do not have cancer and a broken arm with a lot of metal in it.  Most people haven’t had all of that after seven years of dreadful stress.  It is 16 weeks since the operation and I’ve only just this week had the letter from the awful oncologist confirming my decision not to have the radiation, which letter of course brought back all the anguish and alarm.  And as I broke my arm in early July it’s been ten months of in and out of hospital.

I do think I’m on the mend. as long as I don’t try to do too much, the problem is I can’t remember what it felt like to feel well and unworried.  There were so many awful happenings in caring for my mother, such as working right through the first broken arm.  Mostly I just kept going, through all the awful and all the legal stuff, which has only just finished.  I think I am drained, I think I look older.

But I am still here and writing.

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Art therapy.

I haven’t posted for a while.  I finally relaxed and indulged in a bit of art therapy. I’ve been making some arty cards, here they are:

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I am starting to use the stampboard plaques I made such a lot of a while ago.  I have also used some of my own sculpted paper items from the moulds I made, on the right my ancient Aunt’s face. In the centre the hands of the S&H.  Centre and left paper dolls from Tim Holtz and in each a wonderful stamped image from AALL & Create that says Art washes away from the soul the dust of everyday life, it sure does, and some bits of lovely Stamperia rice paper.

Over the long awfulness, what kept me going was watching crafty shopping channels and buying stuff.  The OH has not been happy about the parcels arriving.  I am so glad that dies for die cutting and bits of paper for cutting with the dies (for die cutting) are basically flat.  All the time I was stuck in hospital and all the previous years caring for my mother I kept thinking of all the arty stuff I was missing and then, when I crashed and burned, I kept thinking of how I might never get to it, so I collected and collected and now I am finally well enough to use it.

I am going to have to stop and tidy up, or more precisely, rearrange the piles of junk, as the S&H and gang are coming tomorrow.  As it’s my birthday I’m taking them out for lunch, though to be fair I do that every time they come and I enjoy it.  There are quite a few child-friendly restaurants locally with proper food for children.

And afterwards, back to the art.  Art of all kinds is a wonderful way of processing all the stuff that happens to you in life.  Like vomiting up buckets of blood, it gets rid of all the bad stuff, except in a non violent and undangerous way

I am also writing and might soon be gardening, though the OH is going to have a workshop which will involve chopping up the lawn and laying concrete.  Also, in the front of the house, the drive is going to be widened so the S&H and DIL can park when they come.  We are living on what has turned into a busy road and need to make access safe.  So maybe not gardening until all the construction is done.

And then more art therapy until I feel cleansed of all the terrible things that have happened over the last year.  I had a dreadful year when I was 33; I had a miscarriage and cancer and two lots of surgery.  At 66 I had a broken arm and cancer and surgery for each.  I wonder what will happen at 99?  I believe life is cyclical.  As you get older you do sometimes think:  Oh hello, been here before.  Maybe that’s what life is about, learning.  Perhaps if the lessons get harder it’s a sign of progress in the curriculum.  Fortunately if the lessons are really hard there is art because:

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A toy to make for a toddler.

Board racers

Toys to make for small children.

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In the mid 1950s a local policeman was popular among parents as the entertainment at children’s parties. He was cheap, safe and slightly wonderful and few families had television so he went down a storm with his not very magic tricks. Top favourite was a wooden box with a sliding sun in it and painted wooden clouds at either end, the ‘magician’ would ask his young audience to shout when the sun came out and then tilt the box so the sun slid behind a cloud.

This simple mechanism, which was certainly not new last century, has resurfaced lately as Penny Sliders: greetings cards in which the weight of a concealed coin propels a card shape across the surface of the card picture.

I have adapted this idea to produce the toys depicted for my grandchildren. These toys are made of cardboard and coins; whilst strong enough to be played with for years and safely without small loose parts, the entire toy is recyclable and will not end up, as so many toys do currently, as lumps of plastic waste clogging up the sea or landfill. Minimal skill is required, if you can cut cardboard and apply glue to it, you can make them, no artistic ability is needed either, you can buy the parts to make them look like mine and you can recycle cardboard you were going to throw away to make the free version. I made them for my grandson’s first birthday, but his big sister, who is two and a half, likes them too.

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Tools and materials.

Cardboard. The board I used is one eighth of an inch, about 3mm thick. I used new board sold as ‘chipboard’ in arts and crafts supplies stores. It is solid board, if you are using recycled board avoid the kind with a hollow corrugated inner, it wouldn’t be strong enough.

Coloured cardboard for decoration. I used Adorable Scorable from Hunkydory. It is 300 GSM and has bendy ink technology, meaning the surface colour will not crack to show plain card when bent. Some of the vehicles are pictures cut from the Hunkydory Little Books. Use the best quality printed material you can find for decoration.

Cutting dies to make the sliding holes. I used the Penny Sliders package from Tattered Lace, which includes 9 slider holes, coin covers and shapes to make the things that will slide, the rocket is theirs. Elizabeth Craft Designs make Sliders and Spinners which are just the dies to cut four holes. I only used the dies as a marking guide, they are not deep enough to cut through the thick cardboard. You don’t need dies or a die cutting machine, you could make the holes yourself.

Strong glue. I used Aileen’s Thick Tacky glue, I also used the strongest double sided narrow construction sticky tape I could find. It’s usually sold as red liner tape because it comes on a red carrier tape.

Non-toxic water based varnish and colouring materials. The toy is too big for a small child to get into its mouth but some children will lick anything.

Big scissors.

Metal ruler.

Strong bladed craft knife.

Paper clips.

Coins or metal discs.

Begin by deciding the size, which may be decided for you if you have chosen to use the Tattered Lace or Elizabeth Craft sliding dies. If you are making the sliding holes yourself you could make them any length but if you make them longer than A4 paper size you may struggle to find coloured card to decorate. You need to leave sufficient solid board at the end of the slides so the board front is not weakened by the hole. You should design the size large enough to deter a child from eating the toy but not too big to hold.  Please take notice of the child you are designing for, none of my instructions come with any kind of warranty, design professional agreement or any such thing.  The world as it is today means that I have to say I cannot be responsible for you making something dangerously edible, or any toddler you know bashing their little sibling with it or poking their fingers in the slots, or taking it in the bath and making it all soggy or any of that stuff.  Please do use your own good sense and knowledge of your child recipient.

Decide on the theme for your board. I made one board with land racing vehicles, all of which are from the Hunkydory Little Books, and the other with sky vehicles: one is the Tattered Lace rocket – the balloon and plane are pictures from food packaging. Your moving parts do not have to be vehicles, a printed photograph of the family dog racing along, a rolling football, a tumbling teddy bear or a snowman on a sledge would be just as entertaining. Position the sliding holes on the board to make sense of the narrative, or not, as you wish, and run the cardboard base through the die cutting machine with dies attached to mark the holes. Use your strong craft knife to cut right through the board with many strokes. If you do not have a die cutting machine, mark and cut slots of your own. The sliding holes do not need to have rounded ends. The slots cut by the dies are just under half an inch, or 5mm wide. Providing the slots are narrower than the coin which will go behind them on the inside of the toy and the card shape which will slide on the outside, they will work. I ended up widening my slots by a couple of millimetres to enhance the slideablity but I would start at 5mm because it is easier to cut cardboard away than stick it back in. However you do it, the actual cutting of the holes will be performed by you with a craft knife and patience. This is the most difficult part of the whole operation, if you can produce cardboard with holes in similar to this:

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you can make the toy. I cut identical holes in coloured card for the back and front by drawing through the original holes with a pencil then stuck the three layers together. I wanted the inside to be smooth card too, to enhance the sliding. I coloured the inside edges of the slots using a non-toxic marker pen, became quite artistic on the card fronts, and varnished to finish.

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The mechanism consists of a coin on the inside, a card shape on the outside and a tube to connect the two through the sliding hole.

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The five ‘dots’ in the photo are rolled up, glued, thin card forming tubes long enough to project on either side of the picture board. Make them thin enough to slide in the hole easily; each will acquire another layer of thin card in the next step. Once the rolls are dry, roll and glue each one in another piece of thin card, cut the spare card that sticks out at the ends of the roll into fringes and splay them out, enabling a coin to stick to one splayed end and a picture to the other.

I cut a circle of card with a hole in the middle to make a card washer. The Tattered Lace penny sliders set has coin covers included but you could make your own by drawing round your coin and making a hole in the middle with a hole punch. Thread the splays through the hole in the card washer and stick them to the washer.

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I used red liner tape on the splays. Then stick your coin on top of that, using red liner tape and thick tacky glue or whatever you are using that will set stronger than the will of a two year old having a temper tantrum and similarly top off with an unholed card coin cover.

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This is the inner mechanism. Try each one through the slots in the picture front, you may need to make adjustments, widening the slot as required, an emery board works. I found the shapes of the slots affected the free motion, some mechanisms moved in some slots more easily than others, so I determined which were best by trial and error and laid them out marked accordingly.

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Now you’re ready for the picture. Cut the original picture out and a piece of chipboard or your thick card the same and a thinner piece of card with a hole punched in it for the splay to poke through.

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The thick card will accommodate a small coin, I used a smaller coin than that underneath, the weight of the picture layers balances the larger coin. In the central layer I excavated a hole for the coin to sit in.

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I did the same for all the pictures.

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I stuck the splay through the hole, made a sandwich with the holed base, the splay, the coin and the thick card and stuck them all together, using paper clips to hold them overnight. As you can see I have coloured the edges of the card that might show in the finished toy.

Are we nearly there yet? Yes we are!

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Now we have to make the housing for the mechanisms. To do this turn the board over at this stage and measure to determine the depth of the housing.

I cut a strip of chipboard an inch wide nearly the same length as the toy.

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I scored and turned in a quarter inch lip at each side. This leaves a weakness; the board is only joined by a thin sliver. To account for this I cut quarter inch strips of board and glued them in the missing corners.

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When the glue is dry stick the walls you have just made all round the back of the toy. I have left a gap at one corner because I have made a toy for a boy with a sister. Sooner or later someone will post something of value, or a baked bean* through the slot on the front and there will be tears before bedtime.

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I have glued the walls about quarter of an inch in from the edge, for strength and to make the finishing easier. The neatness of the walls is less important than the strength.

I cut my coloured card to cover: strips to fasten to each quarter inch lip, up the wall and over on to the top and two covers to fit the back.

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For strength I glued one back on, turned the box over and weighted it. Once the glue was dry I fitted the edges. This was tricky and required patience. Make sure all the coloured card is stuck, smoothing and pressing as you go, I turned the card into the baked bean release gap and glued it there too.

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I went round the corners and glued the main side strip on top.

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Glued up the walls on to the back it still doesn’t look neat, but it will once we have glued the second back on, turned it upside down and weighted the whole lot with whatever you can find.

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The last job is to remove the paperclips, stick the coloured pictures on the sliders and varnish them.

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And play with it.

*Baked beans are valuable as protein, especially if you manage to get them in your mouth. Equally valuable are the address of the suppliers of the items I used,

www.tatteredlace.co.uk

www.hunkydorycrafts.co.uk

www.elizabethcraftdesigns.com

Tattered Lace and Hunkydory products are also available at www.createandcraft.com

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What to say to somebody with cancer.

I had a doll order, actually last week but I only happened by chance to notice it.  Orders come into a special place in my inbox.  As there have been none for a year I stopped checking, if you do make an order please email me to tell me to look, as regular readers know, I’ve had other things to think about recently.  I have asked the S&H, who is also the webmaster, if he will redo the shop because the system I previously used for getting pictures of dolls up there, was based around the moves necessary to use the free zoom tool which has since been discontinued.  As it took about 14 actions to get each picture into the shop, this is not so bad, moreover most devices have their own magnification abilities now anyway.  I do need to get some of the new dolls into the shop, 24th scale is having a bit of a resurgence and I’m well aware that not that many people are making in that scale, so watch this space.  I’ve asked the S&H if he’ll do it as my birthday present, with a bit of luck and a following wind it will happen before I’m much older.  Maybe.

Meanwhile the collector who ordered the doll emailed to say she had wanted to write but didn’t know what to say.

This is a common problem.  As we get better at medical matters and the world population is longer lived, healthier and serviced by various agencies and health professionals, we may live right into our adult lives with little contact with disease and diseased people.  As short a time ago as the Victorian era most large families had a family member with a health problem, a physical disability caused by birth trauma or poor nutrition, or a chronic condition for which there was no cure.  My mother often said that the greatest benefit in her lifetime had been the development of antibiotics.  Up to perhaps 70 years ago most people had seen a dead body and in every community there would be someone who knew how to lay out a body.  Dead babies were commonplace and many children did not survive their early years.  That’s the whole of history, up, pretty much to the start of my lifetime.  Currently in the UK only one family in 20 has a child with disability problems.  Whilst that is one family too many it still leaves 19 families who would not have had to face the problem, find out about it or find out what to do.

This has a direct impact collectively on our core knowledge and coping skills.  Not only do we not know what to do for someone with serious health problems, we don’t even know what to say.  When my mother was ill I found the world divided between those who took to the hills and those who did not.  My parents had entertained extensively.  About once a fortnight my mother cooked dinner and a soiree was had for friends.  My father had an extensive wine cellar and my mother was a brilliant cook.  Guests started with sherry or champagne, had a three course meal of the melon in liquor, pheasant in amazing sauce and several veg, possibly a choice of puddings, cheeseboard and coffee or more liquors and chocolate, variety.  So where were all of these guests when my mother became demented?  Two couples and one widow remained in contact until the end.  In her lifetime my mother gave hundreds of dinner parties.

I wrote about this in dementia diaries.  I said that at least people would know what to do if it were cancer.  I wrote that 33 years ago when I had cancer the first time, people crossed the road to avoid having to speak to me because they didn’t know what to say.  Exactly one neighbour knew what to do and kept calling.  I wrote that these days things would be better.

I was wrong.  For many years my hobby has been card making.  I make all my own Christmas cards and keep a box of cards I’ve made for the OH to give to pals at the pub and all my friends get hand made cards for every occasion.  After my hysterectomy, stuck in hospital for 16 days vomiting blood I had two cards.  One went in with me, a friend had sent it to wish me luck.  The OH brought in another that another friend had sent to the house. Both were editors of magazines I had written for long ago.  The second card I clutched like a talisman through the night of the long naso-gastric tubes.  In a horrible world of people wanting to hurt me for no good reason, the card, which had a picture of flowers in a garden, meant everything to me.  When I got home I had a card from my grandchildren, which was lovely.

So what do you say on such a card.  What can you write?  The answer is pretty much anything kind.

You have to consider what else has been said to me and what else has been happening.  People have caused me pain, chopped bits off, threatened me with  torturous treatments of dubious benefit, shoved things down me and in me, starved me, measured everything and put stuff in my veins.  Even last week after my meeting with my special nurse, I reminded her that she had said  I could have further treatment at any time, as I left she said ‘Well yes but it would only be palliative.’  Now you tell me?

So anything you can say that is kind in a phone call or a card or an email or face to face is better than any of that.  You could ask: How are you feeling?  I’m sorry you have been so poorly.  You could say:  I’m thinking of you.  You could say: I’m sending good wishes.  You could say I hope things improve for you.

Almost anything you could say that is honest and kind would be welcome.  I felt so sorry for my mother, isolated and ill and I was angry on her behalf.  There didn’t seem to be anyone to be angry on my behalf.  On Valentines Day the OH said, I haven’t got you a card because we don’t bother with such things now.  I had just had my female bits removed and I then I was rejected by my husband, who won’t give me a valentines day thing unless he gets something in exchange.  Almost anything you can say would be kinder than that.  This morning we got up early for the plumber, who hasn’t come, so he has spent the morning shouting at me because he had to get up at eight o’ clock.  Almost anything you can do would be nicer than that.

If you are not closely connected with the person with the horrible disease you are in a much better position than family members.  You probably won’t be exhausted from hospital visiting, which is a chore and a trial all round.  These days families are allowed to be there for hours and hours, under the mistaken belief that they are just what’s needed to make you feel better.  You can stay from just after lunch until bedtime and some, mostly loud, families did.

If this isn’t you and you aren’t the person paying through the nose for treatment, hospital parking, long term care or anything else then you really have got off scot free. All you have to do is behave like a comic superhero, swoop in with a message of good cheer and swoop off again.  Do not do what my current neighbour did, promise to cook before the event and then never come near.  In fact don’t promise anything.  Just do once you know the person has survived the op, the treatment, whatever.  All you need to do is a card, or a quick phone call if you think the person is well enough to talk, or a message by any other means.  All you really need when you are walking the trackless valley of despair is to know you are not forgotten.  All you need when surrounded by people who apparently wish you ill, and you’re stuck in the machine which will soullessly meet out whatever horror is next, is to know that there is still someone who only wishes you well.

When to do it is like old fashioned advice on writing thank you letters, the more prompt they are the briefer they can be.  If you sent a card and the person died unexpectedly before it arrived it would still be better received than turning your back on suffering.  I did send a get well card to my father-in-law, we then went to see him and the card arrived the following day, after he had died during the night.  But if something had prevented us going, my step-mother-in-law would have known that he was in our thoughts.  It is of importance in the era of selfies and self absorption to give space in your thoughts to another person.

It goes a very long way, just one wish for the good health and good luck of another human being.  Thoughts are things, they have an existence of their own.  Thoughts are prayers and also curses and they all have an effect. I am aware at present and possibly for quite some time that I am emotionally very vulnerable.  It doesn’t take much to hurt me or let the tendrils of fear paralyse me again.  Sending good thoughts and positivity to someone surrounded by decline and negativity, especially someone whose family is being negative or fearful or callous or just sick and tired of being with someone sick and tired, is a great kindness and a light through the dark places.

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Keeping the faith.

The OH has always said that I would worry if I didn’t have anything to worry about.

That might be true.  It might be the legacy of a difficult childhood, it might be all the things that have happened in my life where other people have blithely trashed themselves and others and expected someone else to worry about it and the someone else was me.  I would say that I was an optimist and a glass half full person but I am also a realist who knows that bad things can happen and someone thirsty can pass by and there you are with an empty glass.

Given all of which, choosing not to have further therapies for cancer might not be the best choice for someone like me.  On the other hand if the therapies were going to have damaging and life changing outcomes, maybe it was a good choice because, whilst optimistically they might not happen, realistically they might.

I haven’t had a day yet since I saw the oncologist that hasn’t had a worry.  I have tried to keep busy but I do get tired quickly, though not as quickly as I used to do, so there is a bit of sitting around, in which to worry. How people sit for hours vacuously watching television, I have no idea, to me it’s just half hours of worry in between the adverts.

Next week though, I see the specialist nurse, who was ill for some time.  Then we can both worry and she can do it professionally, which is bound to be better.  I still haven’t had an appointment for the first check-up after the operation because it still hasn’t been three months since the operation.  I must ask the nurse if I have to make the appointment or if they’ll send a letter.  And there’s another worry, last time I had cancer 33 years ago, the first lot of surgery didn’t get it and I had to have another lot, so I’m not saying breezily that everything is OK.  It might not be.  On the other other hand being cheerful and positive is my best (and only) defence against things going wrong again.  Well it’s not my only defence, losing a bit more weight will help, except that they weigh me every time I turn up anywhere because unexplained weight loss is one of the signs I might have cancer back again.

Are you joining in with the worry yet?  If not I feel you might not be paying attention properly.

I remember this from last time.  Living from check-up to check-up.  The hurry up and wait is the killer diller of this disease.  Except that it isn’t, the cancer is the killer diller the waiting is, like fear, just its henchman.

Yet here we are at Easter, a more appropriate festival there could not be.  The light after the end of the tunnel and the return of hope.  Except that, sadly with my nose in books always, I know that to be a Christian myth tacked on to the much older Osiris legend, where the baddie not only kills but dismembers the goodie and scatters him about a bit.  Maybe smears him on a microscope slide, who knows? 

My booknose also reminds me of Peter Pan and Narnia.  Aslan is defeated, Tinkerbell is dying.  Clap if you believe in fairies, roar if you are not dead yet.

I’d have been happy to be the original Isis, the wife of Osiris, Susan, or any of the children, or even Peter Pan, I didn’t want to be Osiris, or Aslan or even Tinkerbell.

Keep reading if you believe in me, I’ll hope to keep writing.

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The Min

You’ll never guess what I did on Saturday?

I visited Miniatura!

It really does you good sometimes to stand back and have a good look at what you are doing.  I have been so deeply immersed in the show for over a quarter of a century I have absolutely no idea what the show is like, so I went and had a look.

What makes it stand out from any other show of any other type is that the majority of the show is hand made by artisans of incredible skill.  The standard is staggering.  There were a couple of new exhibitors who would have been headline news anywhere else, at Miniatura they just fitted in nicely.  Absolutely nobody was busy telling anyone how good they are.  Modesty is endemic.  There was not a single table that was boring.  Every exhibit was worthy of rapt attention for a very long time.  Even the people with support stands retailing fabrics for miniature use, for example, were astonishing by virtue of the effort put in to cramming a stand with huge quantities of really good stuff.

How nice the people are.  The visitors are polite, the organisers are constantly circulating to help with anything, the exhibitors are utterly lovely, it just has to be the nicest day out you can possibly have.

But gosh it was tiring.  I walked for a couple of hours at a time and was so tired when I got home I didn’t know where to put myself.  It was probably a bit early for me to have such a tiring day but it was worth it.  And I had taken plenty of money because I had the time to take my time and do shopping.  Now I have a fantastic collection of little paper bags and I keep having a little look.

Oh wow what a show.

I have been to shows of other hobbies.  I have been to paper crafting shows, sewing shows, cake shows, art shows and craft fairs.  Comparing them with Miniatura, there is no comparison.  In other shows the handmade articles tend to be very amateurish and a bit village hall.  The majority of sizeable shows are filled with factory made goods.  Sometimes the articles have artisan input which is then mass produced.

At Miniatura the kits for you to make things are themselves handmade.  On at least every other stand you can buy items where there’s one like it in the world and when you’ve bought it you own it and no one else can.  It’s a collector’s paradise, it really is.  If you made a collection from Miniatura or filled a house it would easily be the only one like it ever.

There is only one Miniatura, it is completely and utterly brilliant and next time I hope to be there behind a table, where I think I belong.

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Looking up.

Why am I looking up?  Because I’ve spent a long time looking down.  Nothing much has changed, maybe.  Life is about attitude.  Terry Pratchett was of the opinion, often stated in his books, that we tell ourselves stories to explain life and understand it.  I agree.  If you are the victim of your life you will tell yourself quite a different story from the one you will tell if you are the hero of your life, or the villain in other people’s lives.  I sometimes think my mother was so very difficult because she tended to live her life as a pre-emptive strike, conditioned by reacting to her father who was even more difficult.  He was a drinker with mood swings which I didn’t hear about until I went to live with my mother.  She did a very convincing take off of his shouting when the draught from a slammed door hit his gouty foot, which he was balancing on a gout stool while he sipped his ‘medicinal’ whiskey.  So: small and terrified, turned to tense and aggressive and kept it up forever, long after the threat had gone.

It is difficult to live entirely in the present.  I am doing my best to do so.  Sometimes this comes down to telling myself:  All is well.  I am well.  If the OH is out drinking that is his problem, not mine.  Right now I am warm, I am well.  All is well.

The only time you don’t want to live in the present is if it is really awful.  If for example someone is saying to you:  You may feel a scraping or twisting sensation as the camera goes into your duodenum and on the way back up I will revolve it in your oesophagus.

Happy place, happy place, I am in a happy place.

The camera down the neck started with a lot of waiting and filling in consent forms about it being OK if they accidentally shoved the camera through any bodily structures and out into the light of day.  So ideal for building up tension I can’t imagine why there is no Hollywood blockbuster about it.  On screen a huge lily-white rich upper class doctor saying it with a leer to a  tiny defenceless mixed race transgender poor person and the entire film industry would grind to a halt while celebrities flounced up and down red carpets everywhere clad in potato sacks.

Being me I filled the form in meekly and sat and waited until my name was called, half an hour later.  Oh at last it’s me.  Yes it was and it was me taken to a different waiting room and left for another half hour.  Tension was building beautifully.  You could tell it was working by the way the two other ladies waiting were discussing previous operations in high pitched squeaks and nervous whinnies.  I think it was Tony Hancock who used to remind us that there was always someone else worse off than us, and his name was……. and he lived at…………(56 Railway Cuttings East Cheam, probably, or nearby.)  Well, amazingly, I met the lady worse off than me.  She too had broken her upper arm in various places but, unlike lucky me, was in continual pain and was going private to have the nerves killed off in her shoulder, after which her arm would stop hurting, hopefully but would probably not work again, much.  I felt blessed.  The other lady had gone down the route of being interesting to doctors, and was able to give a lengthy description of all the procedures she had had for her guts, her colon, her lungs, her legs and all points north and how very understanding bosses at work had been about giving her time off.  She was also very descriptive about how nothing had helped much and how her various consultants, with whom she seemed to be on first name terms, were alternately despairing of her and good at writing to her with another idea for surgery.  I listened and felt perhaps my theory about them having to do things to you once you got into the system, might be right after all.

Then my name was called and they led me off into…………..another waiting room!  The doctor and a nurse were very concerned.  I had requested anaesthetic and a numbing spray.  However, my hospital records indicated that the responsible adult I had nominated for looking after me and staying by my side for 24 solid hours (the OH) had a drinking problem and could not be nominated.  Could other family members be drafted in to do the job?  I said they could not but that the OH was high functioning.  High functioning or not they had found his hospital records too and the only way was I was going to get the camera down my neck was if I just had the spray.  No knock-out injection for me.

By now the tension had built.  You could have fastened my hands to one end of a yew bow and my feet to the other and fired an arrow to Piccadilly Circus easily. TWANGGGG!

But I am meek and very British, so I thanked them politely that I was going to have a horrible procedure that I was terrified of whilst compos mentis and able to feel everything.  Lovely.  Thank you so much.  I was assured that if there was a problem I could put my hand up.  What, through the roof and grab passing planes, at all?

And then I was escorted.

Back to the second waiting room.

At this stage I would like to caution you that chomping on your computer or device on which you read me is inadvisable, besides which I haven’t got to the really knicker-gripping bit yet.  Just hum some Great White Shark, fresh from the dentist, blood in the water music would you?  Excellent.  Thank you.

So I listened to some more stories from the far side of health and well-being, including: How the Neighbour Sent For The Ambulance While I Sat And Held My Arm Together and: I Wish They Would Just Get On And Put A Camera Up, My Consultant Cannot Decide If Have A Polyp Or A Constricted Colon.*  I didn’t join in, I just sat and worried.

And then it was my turn.  Come in.  Lie down.  Lie on your side.  We are going to wind you up a bit.  (You don’t say.)   You are quite small, though we have this very long thick hose with a camera in it so we are going to wind you up a bit more.  (No shit?)  Try not to fall off the very high, shiny, polished, narrow table.  Just relax. 

Relax!  Relax!  Relax, are you crackers!  Twang!  Twing!  Twong!

Open wide.  Now the spray.  A bit more spray.  Swallow, more spray.  Now we will put this gag on you to force your mouth open so you cannot escape.  Now just swallow the camera on the end of this massive metal hosepipe.

Cakkers, oo ar cakkers, I kew oo er.  Eee?   retch retch retch, buuk buuk buuk, cakkers.  Arrg Arrg Arrg.

Very good, now I’m going right through your stomach into your duodenum.

En, ere?  China?

You’re doing very well, you’ll feel it twisting around quite a bit while I have a good look at your duodenum, keep very still.

Ere’s a choice? Arg arg.

I’m coming up into your stomach.  You have a normal stomach.

O.  I hag Ot.  Ere is a Cangera ing it.

Up into your oesophagus.  I am going to take several small samples, you may feel

AAAH!   AAAH!   AAAH!

I think you may have felt that.

O It!

Now I am going to revolve the camera in your oesophagus, this may be tricky because you have a small oesophagus and you may feel it.

ER  ER  ER  ER            ER  ER             AAARGH!

I thought so.  One last look.  All round.  We’re coming out now.  You may

retch retch retch bleurrg bleurrgh.

All done.

And I was thoroughly, and thanks to the lack of injection not only did I experience it all, I can recall it all too, as you can see.

But I had found and taken with me the diagram and summation from the first endoscopy in 2009.  The doctor finished printing hers and we compared notes.

She declared that not only was I not worse, apart from a bit of inflammation I actually looked as if I had healed, on my own (because I cannot take the medication) and pending the histology she was going to recommend that I did not need the procedure repeating again, probably ever.

And afterwards the nurse said:  You kept beautifully still, some people twist around as if they are trying to escape, they even do it with the camera in them.

Do they really?  Fancy that!

And rest.

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* They use different cameras for either end of the body.  They say+

+You really need to believe them.  Though, of course, the cameras are washable.  30 degrees, no bleach, tumble dry.

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Worry.

My first and probably only meeting with the oncologist midweek was a disaster, to say the least.

My specialist nurse has been off sick.  I do not take the OH into meetings: I did once and he contradicted what I was telling the doctor and, I felt, tried to take over.  I prefer, if possible, to listen to the news but have the special nurse there so that afterwards I can ask her what on earth the doctor said.  But as it was I went in on my own.

The oncologist listened to my recent history, including all the family troubles that I believe got me where I am.  He drew me a picture of what the histology had discovered.  Although the cancer was contained it was a millimetre away from the outside and it was seen in a blood vessel.  He said this carried an up to 15% minimum risk of recurrence which would be reduced to a 4% maximum risk by radiation therapy which would be at another hospital, be 25 sessions over 25 weeks but carry a risk of stoma, lifelong bleeding from the back passage which most people found very challenging, shrinkage of the bladder – major urgency, when you have to go it’s immediate, risk of fistula, damage to the bowel, requiring reduction surgery and major dietary changes, weakness, damage to skin, bones and all remaining pelvic and female structures, shrinkage of all passages, sickness, illness and damage to the bones of the pelvis including all over small density losses leading to multiple pelvic fractures and that any of these things could happen immediately, during the treatment, or years after the treatment.

I asked if the OH could come in to listen to that list and he said no, he had 20 patients to see that morning.

I left but thought I was going to faint in the corridor and then I started shivering and couldn’t stop.

In the corner of the building was the Macmillan nurse, the doctor had given me a list to give to her of the leaflets I would need.

The OH listened and she listened and I shivered and shook until I felt I would break.  I had not felt in shock like that since I registered my father’s death.

Was the doctor saying I would die if I didn’t have the treatment and I would die if I did?  That’s what it sounded like to me.

The Macmillan nurse was great.  She said she would pop along to the doctor and see if he could clarify what he meant.  She came back and said he was busy but if we could write a list of questions she would ask him in his lunch break and get back to me.

So we made a list of questions, she gave me a heap of booklets and somehow I managed to walk to the car and get home and sat and shivered and shivered.

Later in the day she rang with the two top questions, and some others, answered. The top two answers were: 1) there is no cancer in me now and 2)all these treatments are just belt and braces.  Insurance.

I still have the camera down the neck to come on Tuesday.  I cannot really make any decisions until then.  Naturally the OH and the S&H wish me to be blasted with radiation.  Families are prone to wanting people who have been sick to have every treatment available.  As I found out in my recent hospital visit, having every treatment available is not necessarily a benefit.

One of the things that has been happening recently is that I have been waking earlier and earlier.  I am aware that I might be on the slide into clinical depression.  I was told when I had this as a teenager and didn’t speak for a year that stressful situations could tip me back into depression.  Exercise is how I normally counteract this; it’s been tricky with a broken arm, I don’t know how it would be with a broken pelvis.  I’ve requested some time with a clinical psychologist.

Then I have to consider the OH.  If you have healthy family looking after you, ideally someone younger and stronger, then you have someone to rely upon to get you to treatments and take you home again, which the OH has been good at but his memory lapses are now so frequent and obvious, his mood swings so regular and his reliance on painkillers for his gout so great, I think I would be very foolish indeed to imagine I could rely on his health for twenty five weeks.  Radiation therapy is apparently ineffective unless completed; if you’re aiming to blast any recurring cancer cells or those that suddenly appear or have developed you’ve got to do it until they are all zapped or there’s no point.  25 weeks takes us  to Autumn Miniatura, it’s almost six months.  The worst of all worlds would be to have radiation until say, my bladder, bones and bowel were destroyed and then  have to stop because the alcohol had suddenly got to the OH and he had a stroke like his father and I would have to stop treatment to look after him, damaged, ill and incontinent.  Not to mention permanently bleeding from the back passage ‘which many people find challenging’.  I bet they do.  The OH says he is like his father, which, physically, is increasingly true as he ages.  Given that his mother had Alzheimer’s and his father had a stroke and had to learn to walk and talk again, you would think that drinking alcohol every day, which invites such illnesses would be something to avoid.  I can’t really comment.  As usual the doctor asked me what diseases I had inherited and as usual I had to say I had no idea.

By the following day I was in a right state.  It got worse and worse until yesterday when I rang one of the Macmillan phone lines and talked it all out for about an hour and God Bless Them, they listened.

I am trying to focus on the positives.  My lifeline, fingernails and eyelashes are still growing, I suddenly have hairy legs like a Wooky.  They think I’m OK.

There is also the point, which I have found to be true throughout life, that you get more of what you focus on.  There is no doubt that doctors doctor, it’s what they are paid to do.  It is also true that we expect definite answers from modern medicine.  We expect that someone will say: go away, you are cured.  As I found out last time I had cancer, this doesn’t happen, doctors don’t say this in case you aren’t cured and do know a lawyer.  It is also true only for the length of time it is true.  My step-mum-in-law’s daughter had cancer, surgery and the OK some years ago and is now having difficulties again.

Before me lie several possibilities.  I can see a future in which I start down a path of treatment for ill health and am still there years later, possibly living in a specialist facility and being brave as I slowly dwindle into nothing.  I will remember for a long time the doctor outside of the curtains round my bed in hospital saying to his colleague: Let’s naso-gastric tube her then, for completeness.  You get more of what you focus on.

I can also see a future in which I reduce my other risk factors for cancer.  Some, such as caring for my mother and worrying about having enough money to see it through, have already gone.  Some good factors such as being able and free to drive my little car are coming back again.  Soon I will be able to get back to my Al-Anon support group and my painting group.  If I continue strong I can also work out and keep improving my shoulder and arm, I can already tap myself on the head, which I couldn’t do at Christmas.  I think if I remain strong I can get back to being me, back to busy, back to happy, back to getting on with my life.  Back to writing my book.  As a friend pointed out, I am still bereaved.  I never had time to grieve for my father, and I do miss him, and it’s only a year since my mother died and the pesky solicitors are still soliciting, why would they stop when they aren’t quite ready to hand in their lovely bills?

It has been seven years since all this awfulness began.  Seven years of tension and stress and carrying on with solicitors, care agencies, doctors, paperwork, financial institutions, loan agencies, funeral directors, brain donations, support groups and counsellors through alarm, panic, attack, accidents and all the threats posed by the ill health of others and through two broken arms of my own.  I have toughed it out for seven years.  Tense and worried, every day with more to come, snatching sleep, on ready meals and quick junk food.  Seven years braced, waiting for the next blow to fall.

I cannot believe that holding myself tense for a few more years while I wait for the permanent bleeding from the back passage, which most people find very challenging, to start, will help me in any way.

I think the way to good health for me is to rest, to grieve.  To get to someone expert and tell them my whole story and get it out of me.  To get an expert to assess if all the unnecessary medical treatment I received as a child and teenager is what is causing such dramatic physical reactions in me now and if so if further medical intervention is likely to cause more of the same, as I believe it will.

I need to care for just me and to do it gently.  I need clay, I need words, I need gardening. 

I need a change in luck to better luck.  I need Tuesday to be over and the results on the 25th to be good.

I need seven years of awful to be over.  Enough already.

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Futurology.

You should not wish your life away, though on average we spend 1000 hours a year online, which we don’t have to do, and, in a lifetime, 13 months sitting on the toilet, which we do have to do, though not all at once, thank goodness.  You can, of course multitask by doing crosswords on the toilet and, now, here’s a completely new idea – eating whilst online.  When did you last turn your keyboard upside down to see what fell out?  Flavours of snacks they don’t make any more, if it’s been a while.  What this?  Haddock flavour cheese biscuits?  When did I have them?  Oh no, it’s a cat biscuit!  Gross!

So, whilst you should not, I will be so glad to wish myself to Wednesday, when I meet the oncologist and to the following mid week when the endoscope will be behind me, so to speak.

As predicted, in the absence of actual scientific information I have become super superstitious, uber eager to see into the future, variously vehement to vanquish the veil to the view from the next vantage point.

I already read palms, as you know.  I think my life line is growing.  Your life line is the one that runs round the base of your thumb.  It starts between your thumb base and forefinger and runs down to your wrist.  The longer, stronger, deeper and clearer the better.  It shows the length of your life and your life force throughout your life.  If you have had a very eventful life you could expect it to look slightly different on different hands.  On a right handed person I always say the left hand is the hand you were dealt, the right hand is what you make of it.   I started off in an orphanage and could so easily have been one of the child migrants the government is about to compensate.  As I did not get shipped off to Australia as slave labour but in a massive twist of fate, got adopted, the lines on my hands look like they belong to two completely different people.  The only line on both hands which is the same for some space is the head line, differing along the length but which ends in the writer’s fork on both hands.  I’d still have been doing this, cobber, no matter where I was.

None of the lines on your hands are static.  Become a down and out and watch them shorten and break up into a trillion little lines, exercise every day and watch them grow longer and stronger.  The smoothest hands I’ve ever seen belonged to a  sculptor of large ceramic objects who took it all out on huge slabs of clay and consequently was calm and serene, nothing ever phased him.

So I think my life line, right hand, is growing.  During the summer of the broken arm it looked like it was shrinking, especially in the autumn.  My finger nails, both hands, are growing too, as are my eyelashes.

None of this is good enough for solid superstition.  I also read cards.  Not the kind that say ‘J. Plunkett, at your service, hedges cut, lawns mowed, reasonable rates, no job too small.’  No I mean the Tarot cards.  The devil’s playthings,  Ooh the evil.  I find them fascinating, historically and artistically.  They started at the time of the Black Death in Europe, when anyone, rich or poor could have been struck down in an instant and dead within a few days of the boils appearing.  This disease in the fourteenth century left entire villages depopulated with no one left to bury those who died last.  It left plague pits round large towns that ran out of burying ground.  Suddenly depopulation meant that pregnancy was so desirable that it began to feature in art and fashion.  The ‘Is she, isn’t she?’ question posed by the painting popularly called the Marriage of Arnolfini can be resolved by knowing that it was just a fashion but predicting a longed-for event.

Tarot cards not only have meanings singly, which for fourteen cards in each of four suits and the extra cards called the Major Arcana have to be memorised individually, they also have different meanings in every possible combination of two cards and different significances depending on where they turn up in the spread (which is the way the cards are laid on the table.) There are additional meanings for multiples of the same number card, and meanings for each type of spread, of which there are many.  For anyone of advancing years this is some of the best memory training you could have.  I’ve been doing this for years too and still, occasionally, have to refer to my books if I spot something unusual.  It is also a useful way of finding out what you really think about something.  If you ask a question and do not like the answer, that is informative, I think.

However, under the present circumstances. none of these familiar superstitions quite seem to cut the mustard.  I am therefore proposing some new ones, which I will be rigorously testing until  the dreaded dates have passed.

First up:  Reading the prunes.  This involves throwing a pudding dish full of prunes on to the floor and seeing what pattern they make.  If they appear to spell a word, that’s wonderful unless the word is $wmflsp++, in which case you’re on your own.  I do not recommend chucking the jug of custard on the floor as well, unless you are skilled at reading custard, or a school cook, or both.

How about chicken con trails?  This involves leaving a whole cooked chicken alone on the kitchen bench until a cat becomes aware that it is there (10 seconds or less) and watching to see which trail the cat follows as it leaps down from the bench carrying a leg (fairly fortunate) the breast fillets (quite lucky) or the entire chicken (excessively auspicious).  If the cat runs upstairs, things are looking up, if the cat runs under the sofa, things are taking a nose dive, if the cat runs out of the cat door and isn’t even your cat, that’s a misfortune for you but not for the cat and a strong indicator that it’s time to buy a cat door with limited access.  This may work with dogs, but I don’t have the research material, probably with rats, lab or otherwise, but almost certainly not with goldfish.

There are many books available on the meaning of dreams but I’m going to publish the first one on the meaning of drums.  Later.  For now please know that a child learning to drum in another house close by is likely to be annoying in inverse proportion to a) the thickness of the walls b) the openness of the bedroom window and c) the echoic properties of the empty garage.  In all cases it is safe to predict that feuds will be started and insults hurled but it is only a few months to the start of the blessed exam swotting season, when peace will be restored unless the exam is trumpet playing Grade 1A.

Then there is dowsing, traditionally carried out with a forked twig.  Grasp the ends of the twig in either hand.  If the fork rises, it means yes, if the fork falls it means you need an early night and if the twig snaps it’s a strong indictor of iron deficiency.

Last there is Davination.  This under-practised art of futurology involves going to someone called Dave and asking him what he thinks.  This is an excellent tool for divining your own thoughts especially if you find yourself beating him up for suggesting anything so stupid.*

So that’s it.  Roll on and past Wednesday and the next week and on this petty pace from day to day until the last syllable of recorded time, done by whoever is left to record it and then fall over on the floor, clonk.  Only to be sat on by a smug cat with the remnants of the chicken and a bulging eyed dog swallowing the last prune whole.

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*Recommended – choose your Dave with caution and location, not out of a bus queue or from round a brazier under an underpass and not one with a purloined supermarket trolley containing his worldly goods and stuff nicked from the more prudent.  Probably.  Though you could get lucky.**

**I hope I do.

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Future dread.

I have come to dread the arrival of letters from the hospital.  Last week I had a couple of awful ones.  One was the appointment with the oncologist, which is at nine in the morning next week.  It feels like getting up early in order to destroy an entire day.  I would say I cannot imagine anything worse than a meeting with someone to discuss what terrible things they would like to do to you, when very recently the awful things people have done to me have made me so ill.

Except that the week after I have another endoscopy appointment.  They want to put the camera down my neck again because apparently they didn’t get a very good view last time.

What if they find cancer at both ends of me?

In such circumstances you tend to become very superstitious.

Superstition is not just a human trait.  Cats get it too.  From the beginning of living here, when Cleo realised a mouse was not the lovely present she thought it might be, she started bringing me flowers.  This is easy in the spring.  The camellia outside the kitchen window flowers so early that the slightest frost will send the flowers tumbling earthward so she can pick them up in her mouth and bring them in through the cat door.  Fresh ones are best, as any that have lain for more than a week tend to collect slugs.  When camellia season is over I get leaves.  I have always been careful to express delight and thanks, which isn’t difficult; unlike a mouse a camellia flower has never run under the furniture to hide or had to be rescued from the further reaches of anywhere.  The superstition came in when we were away all day looking after my mother.  Often we returned to a hall full of flowers and leaves, in what was obviously cat sympathetic magic.  Mummy loves the flowers and says so, if we bring enough flowers she will appear and say so.  Magic her back here with flowers!  Plenty of human religions have been founded on similar principles ‘The god likes this, so we will do it and he will be here.’  Whilst humans then develop the interesting defence of their habits with a ton of traditions such as: only the trained priest can see the god and interpret his wishes, cats have no such bargaining chips, they just keep bringing the flowers until the Mummy appears.  And it worked.  Every time.  Not just a cat religion.  True.

In my present awful position which I remember so well from the last time I had cancer, as the overriding characteristic of the disease from the patient’s point of view: Hurry up and wait, I develop superstitious bargaining chips like acne on a fifteen year old.  Every time I look more have popped up overnight.

If the endoscopy letter gets opened first I have got it here but I haven’t got it there.  If the appointment is early in the day it means I’m OK because the one where I wasn’t was last thing in the afternoon.  Maybe doctors save the difficult cases for after lunch.  If I’m still losing weight it’s because I’m still not recovered. not because I still have something.

I haven’t quite got to chicken entrails or the way ducks are flying, or the shape made by petrol in a puddle yet. but I might as I get more desperate as the week wears on.  It feels like a long trip in the tumbrel trying to choose which guillotine you’d prefer.

What I am placing faith in is my fingernails.

After the broken arm I wrote about my fingernails and how they were growing on the broken arm like crazy, having received ‘grow and mend’ instructions together with the bones in that arm.  I even showed you the fingernails on the other hand and told you what rubbish they were and how I ascribed this to old age.  They were rubbish.  They split, they flaked, they tore off along the dotted line all the time, they often tore back into the quick and hurt.

Now I have fingernails on both hands.  They are long they are strong, they are smooth, they are pale pink, they are shiny. They haven’t been like this for years.  I think my fingernails think I’m OK.  I believe my fingernails started being rubbish early in the last five years of looking after my mother.  I had the first hysteroscopy for something not quite right in 2013.  Five years ago.

I should know about fingernails as an indicator of health.  Well I do.  I have been practising palmistry ever since I inherited my paternal grandmother’s palmistry book as a teenager.  Fingernails are some of the easiest indicators to spot.  Very domed red nails indicate breathing problems, flat pale nails can be immune system problems, pale almost white nails are iron deficiency (which mine are at present, which you might expect after I vomited so much blood.)  I know all of this and have proved it through hundreds of hands, why did I think my own nails were due to age?

It is difficult to see yourself.  Rabbie Burns remarked:  Wad some po’or the gifie gie us, tae see oorseles as others see us.  He was so right.  I am currently reading a book by the Dalai Lama, which tells you how to invoke the giftie by introspection.  I find it as thrilling to read as the instructions are complex to follow.  You probably know me better than I know myself.  I am swayed by my desires and fears as much as anyone is.  Living in the moment is undoubtedly the answer to my current mental anguish.  I am struggling to do book writing things.  Instead I am doing stupid card making, which is stupid because I do it standing up and can only do half an hour before I collapse in a heap.  I did gardening yesterday because there were so many jobs that needed completing before the end of February.  I managed three quarters of an hour and then had to spend the rest of the day sitting down.

Such rubbish.  Am I to be up and at life as my fingernails suggest, or confined to some irradiated, endoscoped half life?  This time they want to take samples at endoscopy, who is to say this will not start me bleeding into my stomach again with more hospital stays and vomiting blood and sinuses and threats of surgery and goodness knows what?  If they start me bleeding how will they stop it?

I just want doctors to leave me alone.  I don’t want to be blasted with procedures and drugs and antibiotics and bits chopped off and pulled off and shoved on microscope slides.  Leave me alone, I’ve had enough.

Will this happen or the reverse?

Only time will tell.

Dear me, this is awful.

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