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


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.


* 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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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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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.


*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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Buckets of blood part 2

The first news is that the news is not good.  I saw the surgeon on Friday; the histology shows that the cancer had invaded more than half the muscle which makes it stage two.  I will see an oncologist in a fortnight and discuss what this means, they are talking irradiating me, which will burn me inside in the interests of seeking out cells which may or may not be there.

The problem is that everything else that happened following the treatments and investigations made me so ill that I doubt my ability to survive further treatments.

So to continue where I left off.  After the operation they said they had got everything out in one go, which was good, then they showed me how to inject myself with blood thinning medication.  This is not easy.  First try I broke open the sealed vial, removed the syringe, took the rubber tip off and then chucked the syringe into the ward floor where it vibrated back and forth, thinning the concrete and lino.  Such a help.  Second go I got it into myself where there is still a lump and a huge bruise and this really is where the subsequent trouble began.

At home, where as the bathroom is still being updated, (we don’t have one,) going, as you do: Is this where I live?  (Yes but not for long dear, don’t get excited) I injected myself again and I knew, I just knew, for me this was not a good thing.

Well the OH went to quiz night early as is his wont and I felt so ill.  I said as much when he returned.  I sat in bed feeling so ill, rolling with sweat and the shivers alternately.  Finally at about two in the morning I put the light out but continued to sit up with the heirloom bowl close to hand.  The heirloom bowl is a pale green washing up bowl from the nineteen forties inherited from my mother from a time when plastic was a miracle.  It is huge.  My mother used to soak both substantial chilblained feet in it simultaneously right through the fifties.  It is not small.  It is enduring and thick and may be found at the apocalypse on the blasted ball of rock filled with cockroaches and clutched by David Attenborough saying he told us so.

At quarter past three I began to vomit and went on doing so for a good five minutes or more.  I shouted for the OH.  I shouted four times before he came to to the door.  ‘What?’  I asked him to turn the light on three times before he did it and then I was glad I had vomited in the dark because I’d have been terrified if I could have seen what I was doing.  I had vomited blood and filled the bowl to the brim.  I asked the OH to carry it carefully along the landing to the partial bathroom before phoning the ambulance.  Following and half way along the landing I heard the unmistakeable sounds of someone pouring a bowl full of vomit down the toilet.  I ran, shouting ‘Don’t flush!’ and was in time to stop him but he complained that he needed to pee.  The OH was an emergency planning officer.  He is a trained first aider.  Quite when all this training and common sense left his brain to be replaced by the answers to pub quiz questions, I am not sure.  Anyway he went down stairs to pee, got dressed and rang the ambulance and off I went to the hospital I’d only left a day and a half before, in an ambulance.  I went into A&E. where, a few hours later I repeated the vomiting blood (this time black and thin and about a litre and a half) trick by which time everyone was certain I was vomiting blood and I was admitted.

So eventually, early morning, I was on the ward, the OH removed the nice new fluffy dressing gown that I’d bought to go into hospital with, over which I had been comprehensively black sick and took it away to wash, together with the furry bedcover and all other collateral damage.

And then began the dire investigations that made me so ill.  First they X-rayed me then decided to get an endoscope down me to see what was going on.  This is a horrible procedure.  I had it several times when I first had Barrett’s Oesophagus after which research, with which I heartily agreed, showed that it was probably doing more harm than good.  They put a plastic mask on you like the Silence of the Lambs and then shove a camera down the hole in the middle and you retch all the way down and all the way back up again.  It is brutal.  But first, on the ward, Nil By Mouth.  As if there could possibly be anything left in me.  I was allowed an inch of water in a cup, which I was eking out until the cleaner knocked it over.  I asked for more but the sister said primly that Nil by Mouth meant nothing and took the cup away.  By now everything from my stomach up, all tasting of old blood was cleaving to everything else and I doubted they’d be able to remove my tongue from its welded position on the roof of my mouth to get the camera down.  But came the hour, eventually, and I was wheeled in a bed in a draughty gown, right through the main corridor of the hospital to Endoscopy and the dreadful deed was done.  And what did it reveal?  It showed that I had an inflamed oesophagus.  You don’t say.  Half a gallon of stomach acid going up my oesophagus has inflamed it, has it, quel surprise.

So I was wheeled back, covered in stomach acid, decanted on to a chair and observed.  A day and a half later when nothing else had occurred I was discharged but I knew it wasn’t over.

I sat at home, sipping fizzy water, which tasted funny, sipping tea, which was horrible.  The only thing that tasted OK was watermelon, so I had little cubes of that.  By tea time I was sitting by the heirloom bowl, halfway through the evening I asked to go back to A&E.  ‘Two hours waiting in A&E?’ asked the OH with some justification, ‘Are you sure?’

But I was and so it was early hours again when a doctor felt my stomach, I immediately filled a couple of bowls with black blood and there I was, in again.

And, as you might imagine over the course of the next few days I had every scan there is.  I had days of Nil By Mouth followed by Please sip all of this radioactive water.  I had another night of vomiting black blood.  I had black diarrhoea.  Of course, having no water, I had a temperature and an infection and antibiotics.  Because the ward was so hot and dry my sinuses became inflamed and I got through two boxes of tissues a day. And coughed and coughed.  I had a sonogram which disclosed that my colon had fluid filled loops.  Sounds like a nouvelle cuisine pudding doesn’t it?  Three fluid filled loops and elsewhere on a huge plate, five dwindling dots of custard and you know you’ll be hungry again by the time you get to the bus stop.

They sounded surprised but I thought if you intermittently starve someone and then get them to drink a lot of water, fluid filled loops is what they will have.  Then there was the late evening when an earnest young doctor told me he would like to cut my bowel up and rejoin much less of it.  Then there was the worst night of all  when I heard them talking outside of the curtains round my bed about naso-gastric tubing me  ‘for completeness.’  Hmmm.  Run out of things to do?  So later a young Asian doctor with a high pitched nervous laugh tried to shove a tube down my nose into my stomach.  And the way she did it was by laughing and jabbing.  Jab, jab, jab down my right nostril, jab, jab, jab down the left.  By the second go in each nostril I was crying but she went off and fetched a thicker hose and had another two goes each nostril by which time I was squirting blood out of each nostril like a fountain.  So she left, laughing and blaming my sinuses and I rested back and bled and blew and blew and bled.

At midnight two utterly huge Sikh doctors appeared and said they were going to have a go at the naso-gastric tube at which point I put my foot down.  Neither of them could explain how it would help except that they could aspirate vomit and save the oesophagus.  I pointed out that that would not be the oesophagus, that would be my oesophagus and they could do it if I vomited again but until then I was in my rights to refuse this treatment which I didn’t feel was treating anything.

And they went.

Feeling like a suffragette I realised it had been at least a day since I had vomited and that there was a possibility I was getting better despite the treatment.

So the next day it was Nil By Mouth, sip the heavy water, off for a CT scan.  Which is the point at which my veins failed and I had a bolus of iodine hanging off my arm.  But they got a new line into me, got the iodine in and did a scan.  No blockage of anything, frustrating the young doctor who was so keen to chop my bowel up, just fluid filled loops.

Back in the ward I was finally allowed to drink normal water, the OH brought in watermelon, I slept, as much as is possible when you are blowing your sinuses and the blood out every half hour and two days later I went home.

I am still blowing scabs out of my nose, I am still covered in bruises and lumps but I have been at home for a week and will hopefully stay here, though I am still taking the heirloom bowl to bed, in case.

So you can see why I am so very keen not to be irradiated.

I am tough.  My life has made me tough.  I have had fewer hugs than people using me and abusing me, and I’m only little. The people in my life who have actually been kind to me have been very few, mostly people have been looking to see what they can get out of me.  Some weeks ago the OH expressed frustration that I hadn’t invested my inheritance (the solicitors haven’t finished yet) ‘You just won’t let me get my hands on the money, will you?’ he said,  He hugged me yesterday, for the first time in months but I had to ask.  The kindest thing that happened was a doctor who rubbed my back while I was being sick in A&E.  That’s proper doctoring in my book.  I hope he goes far.

As for the bathroom.  Well I was told that I wouldn’t be able to climb over the bath after the op.  We had an old bath with a shower over in a room filled with black mould.  Well I called the plumber who came and had a look and said he would do it in two days like Anneka Rice or some other TV miracle worker.  We went and chose fittings, showers and so on in two visits to the plumbers merchants and then, because I had an impending sense of doom I paid the plumber and the builder upfront even though they both demurred (but not loudly).  And as you can see my instincts were good.  Did I come home to a fully functioning bathroom sixteen days later?  Did I heck as like.  Mind you part of that was because the OH insisted that the mould filled ceiling was pulled down and a new one installed.  He was right, there is no point in covering up black mould.  He variously went and got showered at the gym and I got washed in the heirloom bowl.

But today the OH has put the third coat on the ceiling, tomorrow I will phone the plumber and ask them to finish off and showered and clean I shall continue to recuperate.

The decisions and consultations will be around Miniatura, so I think it better to absent myself now.  I’ll see you there in the autumn when hopefully, all this will be a saga of long ago, the upshot of giving my time and life to people who are careless of it.  For now all I want to do is write my book, though if the plot is to follow real life it should probably be much more dramatic than I had planned.

Some people have very quiet boring lives, I hear.

The gits.


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Yo ho yuk and buckets of blood. Part the first.

Prior to going into hospital on the 25th of January for cancer surgery, I did as much as I could to put my affairs in order.  I just knew something was going to go horribly wrong.  Some of the most miserable situations in my life have arisen as a result of ignoring my intuition.  Having spent so many tortuous weeks in my mother’s house trying to order her affairs and find out where the money was coming from, what debts there were, which service providers, where little accounts were and so on, I was determined to leave no such mess behind me, should the worst come to pass, so I wrote it all down and told the OH and the S&H where to find the information.  I had determined to do this for myself anyway; I think once you reach retirement age, or if you have dependants, this information needs to be available to anyone who will step in to run your affairs either temporarily or permanently.  It isn’t morbid or gloomy to do it; on the contrary it is practical and kindly.

I had not, however, intended to do it quite yet but once I had a date for the operation and a sense of impending doom, I procrastinated no further.  The one item I could not resolve was my business bank account.  As I have had no fairs and therefore no income into it, it is dwindling and will eventually disappear until it turns into a debt.  The bank were wonderfully unhelpful because it takes six weeks to turn a business account into a personal account.  The teller was keen to assure me that the account would be frozen when the person died.  ‘Me,’ I said, ‘not the person, me.’  But they couldn’t help.  So that end was flapping around loose and still is because I’m not well enough to go into town and sort it out.

Otherwise, sorted, I went in, and as you know, came out again a few days later prematurely cock a hoop at having survived, like a fool.  The operation had not proceeded as planned.  In the anaesthetic room, various members of staff introduced themselves.  Next to the anaesthetist stood as callow a youth as you could wish to meet.  I enquired if he was a trainee anaesthetist.  ‘Oh no,’ he averred, ‘I am a doctor student, I am probably going to be a surgeon.’  And then, as I had more pressing matters to attend to, I fell asleep.

It’s a pity you can’t do this with seriously boring people in everyday life.

The rest of the story I discovered the following day back in the ward from the nurse in attendance.  I do not know if he was allowed to intubate me, which would explain a lot of what happened subsequently.  I might find out when I meet the surgeon tomorrow.  Anyhow, the plan to make a keyhole in me for a camera failed not just once miserably because I had adhesions; it failed three times in three different places.  They made the hole, they pumped the air in, they followed it with the camera.  They screwed the camera round, they shook their heads they withdrew the bloody camera.  On the third attempt, before they even got as far as slicing along the old C section scar, the cocky young ‘I’m going to be doctor’ turned to the nurse with a face, she said, ‘Like a block of cheese.’  Which block of cheese fell forward onto her ample bosom going plink plank plunk down the buttons to the waistband and swoosh down her skirt to the floor where she remarked to his supine form, ‘Oh man up!’  before stepping over him.

In theatre the karma is really quite fast.

Despite all of that, I came to, minus various bits, got out of bed and walked the ward and drank water like a thirsty duck all night.  Over the course of the weekend I did more of that and each day they injected me with blood thinning medication.  On Sunday they showed me how to do this to myself and sent me home.

Which is where it all went horribly wrong for the second time, the saga of which I shall relate next time I feel well enough to type.


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Not over

Thank you for your emails and good wishes, all of which have been read but not responded to, because when I said I was back, whilst I was, it wasn’t for long.  Since then I have been back to hospital twice, once in an ambulance, vomited about five litres of black blood and had every type of scan available, drank heavy metal water, had an iodine bolus hanging off an arm and squirted blood out of my nostrils at midnight.

All of this has been happening while I have not had a bathroom and now the plumbers have done something to the stop tap which is leaking water under the expensive wood kitchen floor that now resembles a packet of curly fries.

If anyone accused of being boring, I might suggest they were on the wrong website.  You, however, are here and so am I, having just got back last night and managed to get up today and wash in a bowl.  Tomorrow I will repeat the trick, wring the plumber, and then settle down and tell you alllllll about it.

Put the kettle on, I’m back ( I hope.)


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Backer than Arnie

I am still here.  Mangled.  Full of cold – unhealthy places, hospitals, lots of sick people.  I am sneezing and coughing and clutching myself each sneeze.

But still here.

I didn’t think I was going to be.  I thought something was going to go horribly wrong, and I was right, it did.

But I am still here.

Huge thanks to everyone who wrote, there will be considerably better posts than this in the future because

I am still here.


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