Bed Trip

I'm sorry I've not been in touch. Things have been hard. I can't bear your worrying so it is high time I updated you.

You might be surprised to hear that I've been travelling.

A few months ago my bed upgraded itself. It did this without warning and did it by stealth. Rather like the ninja Windows 10 upgrade that befell many of you last year.

It was always a good bed, a kingsize sleigh bed. For a year it has had two mattresses. Evelyn gave me a memory foam mattress which I chucked on top of the other one while deciding whether I preferred the new one. They're both still there.

Post-upgrade my bed is even better, for now it can fly. It melts through the ceiling and flies wherever I want. Only at night though. It is undetectable by human eye or radar.

I know what you're thinking! Health and Safety, right? I was the same when I first found out. I assumed some sort of harness would be necessary for safe travel at high altitudes. I had to overcome my fear and trust in the sophisticated self-levelling mechanism. The bed never goes out of the horizontal. Ask yourself, when did you ever fall out of bed while sleeping with a small dog in a perfectly horizontal king-size bed? If the answer is "One or more times" please  avoid this technology.

Climate is an important point of the night-flight experience, so the bed is supplied with a miraculous duvet that maintains a pleasant temperature in ambient conditions between -100c to 100c. I don't know what happens if it rains. Fingers crossed it stays dry.

It is steered and powered purely by thought. It therefore rates A+ on the eco scale.

Where would you go, with such a bed? I bet your first trip would be to somewhere really good. I went to Jamaica.

Well it was OK. It was nice seeing the occasional ship in the ocean but there weren't that many and the flight time was long. When I got there the beach was lovely, but I felt like a tourist. I think I missed the point of the flying bed.

Pretty much every trip is in Southern  England now. Often I rise in a graceful arc above Reading and head south-west. I need to get far enough away to find the proper darkness. We're looking at Wiltshire, Somerset, Dorset here.

When I arrive at the proper darkness the bed stops and hovers. Above me are so many stars that the sky looks 3D. After a few years in the  Reading townglow it is mind-blowing. Then I roll over onto my front and look over the edge of my mattresses. In the countryside, there are stars down below as well, made from lights left on in farms,

There are black shapes too, hills and church spires and trees.

There has to be a smell of wood-smoke. A collie dog should do one bark and get an answering Baaa.

When I've had enough of that I will find a little town. Always a different little  town but it doesn't matter, they're all similar. It is very late now and all the locals are in bed so I might go for a cheeky joyride round the streets.

Here we go. Past the Co-op, the charity shop,the estate agents, the tweely named coffee shop, the hairdressers and the big white pub with the pavement narrowing outside it.

[This isn't finished. I have to stop because of the pain. Will finish later if I can. Will post anyway so you know I am still alive]

Bring on the lard

A light snack

Healthy people! Normally I would expect you to find me a very tragic figure. Plenty of crying and hushed marvelling at how brave I am etc.

But just to mix it up I'm going to make you so so jealous.

Wait till you see my diet plan. It's not a bit like yours.

You see, I am on the build-up diet.


Losing weight is almost compulsory when you have cancer. Luckily I was delightfully chunky when I started to shed in May 2016. I had to have what is euphemistically called firm-control underwear to get into my size 16 maid of honour dress for Jane's wedding. The hellish corset thing was stretched so tight in its mission to hold me in that I couldn't get enough slack to undo the poppers to have a wee. I left early to go home and cut myself out.

Now I waver between 2.5 and 3 stone less than that.  My thighs look like balloons that have hung about for weeks and are about to give up the fight. I'm still not skinny by any means but I don't want to get any less because technically I am wasting away and I don't like how that sounds. Not one bit.

Last night I was on the internet reading various diet plans produced by hospitals and health authorities. Oh how I laughed! They are the antithesis of any healthy eating suggestions you ever saw.

One sticks in my head.

Bedtime Snack
Hot chocolate made with fortified milk topped with marshmallows and cream.
A slice of cake.

That's a snack, mind you. You've already troughed down 3 proper meals and 2 giant snacks by this time.

The general strategy seems to be find something calorific then find a way of adding more calories to it. Fruit and veg are OK but for gawds sake don't be filling up on them. Take a moment to drown them in cream, butter, full-fat yogurt, or cheese sauce. Fatten up your full-fat milk by adding milk powder. Put ice-cream in smoothies. Fry anything you think can take it. Yes, that includes bread.

This research lead me to go and buy a can of Dunn's River Nurishment and drink it. This West Indian staple is flavoured milk with additional protein, calcium, vitamins and loads of sugar. It is just the most delicious drink in the whole world.

Bet you wish your diet was FAT like mine.

There just had to be a cruel irony though didn't there? Cancer takes away your appetite, tumours can mess up your digestive capabilities and chemo can turn your mouth to an ulcerated mush or mess with your palate. I tried to eat a brunch burger and chips in the Baron last week. I truly believed I was starving till the thing arrived. Man, that meal was huge! I was repelled. It was only good manners and hatred of wasted money that made me able to eat a few chips.

In all the excitement I ordered this book . But now I have taken the time to see what's actually in it and all the recipes are way too poncy for me to bother with. Oh but it does say "To share with friends and family". Anyone want a loan?

Medication

Medication. Medication.
Medication's what you need.
(If you want to be a record-breaker)

My life is pretty slow these days, but it doesn't help that I have to sing this every time I take a pill. It uses up quite a bit of the day.

Now how did the simple country girl who bravely endured a hangover rather than go and get some paracetamol end up with all these meds? It didn't happen all at once. Let us go back in time and see how it happened.

Pre-Cancer Conditions
These are pills for things that were wrong when cancer was just a twinkle in the devil's eye. Since I seem to be baring all, in my case it was stuff for ADHD and anxiety.

Pre-Cancer Health Crazes
I'm only human and got into miracle supplements just as much as the next woman. Chugging fish oil, glucosamine sulphate, that thing that helps your memory (haha I have honestly forgotten its name)..
I was naively hoping that these would make me less stiff and more intelligent and thus help me live forever. Well that went well.

Pre-Diagnosis Pain Relief
Serious abdominal pain started in June 2016 though had been bumbling away for a few months before.

I started with the classic ibuprofen and paracetamol combo, though the GP told me not to take ibuprofen. For once, I was naughty and defied the doctor, because that way I could get a full 4 hours of sleep. Later she relented and gave me omeprazole, which protects the stomach against the stomach-dissolving aspects of ibu.

In about August, I went to the doctor and cried like a baby, thus starting my canter through the opiates.

First up was co-codamol. I'd had this before and experienced a lovely zonkiness so I was quite looking forward to it. But this time it seemed to do nothing. By the way, you need a script to get decent cocodamol, the stuff you can get over the counter is just pretend.

Next was Tramadol. The first day I took this I vomited into a bag of madelines on a coach. I exaggerate. Pat had managed to remove the madelines in  jig speed. Good woman in a crisis. I then divided the rest of the day between lying in a small room full of chairs wrapped in a tablecloth and sitting in a churchyard crying.

The day after the Tramadol disaster, I went to the GP, cried like a baby again and asked could I please go into hospital and be put on a drip. Apparently, the NHS doesn't work like this, so as a consolation I got some morphine. Ah sweet Morpheus etc etc! It's scary to take your first spoonful, but my God it helps.

Chemotherapy Extras
After my first chemotherapy session, I encountered the largest carrier bag I have ever seen. When held like a normal bag it slid along the ground. It was full of all the extra meds I needed to get through the next two weeks. 

My party bag included 3 sorts of anti-sickness, steroids and Filgrastim injections (boosts bone-marrow cell production? Or something?).

But everything has terrible rules attached. You start this one on day 4 and go on for five days. You start that one on day 2 and taper it off according to a formula. You take the other one for x days, but only IF NEEDED up to a maximum of y tablets per day. Then there are conditions like you must take it first thing  with food, or at the same time every day without food. It is mind-blowing unless you have experience of preparing a timetable for a school of 1500 pupils.

So by now I have filled the pill tin and become very confused. But there is more.

Complications
I guess it's no big deal really, but this nearly broke me.

They found a blood clot in my spleen. They seemed to think this was a worry. When I got home I told my over-educated kids and they explained that the clot may become mobile and travel to my heart brains or lungs, causing instant death. So I guess it IS a worry.

The solution is daily blood-thinning heparin injections. I hate them. They make a squirty noise when you do them, leave a big bruise and sting like mad. 

For a few nano-seconds I considered just giving up and not doing them. But hey, in for a penny, in for a pound. 

And now I must leave you..

It's medication time. Again.

The Victorian Cure

I've had this brilliant idea. 

I've devised an alternative therapy for poorly people. It draws on the solid work done by the Victorians in their treatment of invalids. It should be terrific fun for the invalid and good moral training for everyone involved with them. I call it "The Victorian Cure" and I can hardly wait to get started. 

First, the invalid and  associated carers should check into a seafront hotel in Brighton. The hotel should have "grand" or "imperial" in its name, and be luxurious but not lively. The staff are obsequious but never cheerful, as that would show insufficient respect. The hotel smells of biscuits and disappointment. Everyone but the invalid speaks in a hushed tone. The sound of teacups tinkling is muted by the deep turkey red carpets.

It is crucial that a high-quality bath chair is made available, for at the slightest whim, the invalid must be bundled into furs and taken for an airing along the promenade. Of course, there must always be someone ready to pull the bath chair. This could be a favourite relative or perhaps a local working man of good character anxious to earn a few extra pence. I have heard that Brighton abounds in these. Whoever draws the carriage must at the very least be able to respond to simple commands, such as:

"Desist with the jostling! I am not a cabbage."

"Slow down, you insufferable oik"

"Seagulls are vermin. Please remove them"

I expect that after a few days of promenading, the invalid will become a figure of much interest and admiration. As a result, small children may be washed and offered for inspection. It is polite to look these children up and down and then offer an opinion. For example "What an extraordinarily plain child!" always goes down well, along with "Somebody needs to teach that child to stand up straight." or "As an invalid, I must not be allowed any closer to that insanitary little toad".

I am fortunate to have been blessed with satisfactory off-spring, and these will be instrumental in my own Victorian Cure.

My daughter will naturally abandon her academic, career and social ambitions, for her place now is by my side. Her duties will be many and under-appreciated. She will attempt to gently rearrange my hair almost continually, as I jerk my head irritably and yak on endlessly about how beautiful I once was. 

The boys, too,will have work to do. They will become clerks in stultifying offices and spend every hour that they are not at work, visiting and describing how their hearts are breaking to see their poor Mama suffer so. 

I am not a cruel woman and suspect these 3 currently independent, feisty and creative descendants may struggle in their new roles. Perhaps they can find a creative outlet in composing songs and poems celebrating motherhood in general and me in particular? For example (just off the cuff):

Our mother is like an angel

Looking down from up above

We long to see her smiling

We are drowning in her love.

Carefully-prepared soft food will be brought but we invalids are notoriously picky and it will always be wrong. Sometimes the invalid will fancy something incredibly inconvenient like an avocado and turmeric salad. If sufficient effort is made to provide this, the invalid will reward the effort by taking a small mouthful. Then the plate will be pushed aside and the invalid will sink back into the pillows with a sigh of exhaustion. 

A handsome doctor visits every day. His expression and his diagnosis are always the same. "She is a brave woman. She is much the same."

The main difficulty I see with this most excellent system is funding. I shall of course be lobbying the NHS but am not convinced that they'll come through with the cash. I wonder, might this be a good opportunity for crowd-funding? That way,we can combine the best of the new world with the best of the old.

Insomniacs: Radio 4 Extra

I think I'm annoying some people with my medical one-upmanship so let me make it plain that I do not claim to be an insomniac. If you add up all my naps I get way more than my share .

It's just that my schedule has gone all to cock. Even before all this, my schedule was never that tight.

Now there is no night and day, no weekends, no dates, no structure. All I have is the next hour or so and I decide what to do with it.
I can choose from

• sleep
• watch telly
• something useful
• eat
• medicate
• sit in kitchen with a slack jaw
• dress up like a polar bear and go the shops

It's kind of nice really. Flexi.

I do know that proper insomnia is hell and this is why I'm here to tell you about BBC Radio 4 Extra.

This is a digital radio station that plays spoken word programmes. Comedy, plays, series, books, documentaries, opinions and interviews. Stuff from the whole history of radio.

There is never any news or suggestion that the real world exists. They hardly ever even tell you the time. Programmes occur randomly with no sense of appropriateness to the time of day. Everything comes on twice with a random period between repeats. Due to an anomaly in the probability matrix, if you hear just two programmes in a day, you hear the same programme twice. 

This lack of reference to the real world gives Radio 4x a creepy but interesting atmosphere. It's like listening to transmissions from another planet.

A while ago, I heard an old US radio play in which Humphrey Bogart played a man who had killed someone and was trying to avoid arrest. (I don't know how he killed them, I missed the beginning). He reads in the paper that the death is being treated as accidental. The twist is that he can't handle the guilt and fesses up anyway. 

Weeks later I am still tormented by anxiety from this play. I see Humph in his stolen white clothes bumming a lift out of town with a truck driver. Plot-wise, everything has been resolved now, but still it torments. Maybe because there is no picture as persistent as the one you make up in your head. 

Listening in bed at 3am, the radio winds in and out of dreams in a way that seems plausible, though on analysis, it isn't. I was listening to a thing about snow, and believed I was drinking in every word, with a comfy feeling that at last I was really beginning to understand snow. Then a joke from a sitcom called "Cabin Pressure" comes in, and it all seems fine. 

I think morphine might help a bit with all this dream/reality merging, so your experience might be different. I urge you not to take morphine recreationally however. We don't want a rerun of Trainspotting all over Caversham, now do we?

Poem

One of my mental glitches is that when I am very sleep deprived, I receive a poem fully-formed from the other side.

For example, on an overnight coach from Edinburgh to London in 1982, I saw a bright yellow field in the dawn and took delivery of:

Constable Dunstable
Never says no
He can't hold on
But he won't let go

I've been puzzling over that for the last 34 years, and whaddya know? I just got it! It's about Buddhism and life and death and acceptance. But then, isn't everything these days?

I couldn't sleep last night due to a rich mix of rage, terror, pain and plain old bad mood. My poem arrived about 4am. It's for my boy Johnny. And it has a title!

Inheritance
Everythng good
I gave to you
Then you gave it back
By a factor of two.

Scan results

Blinking Flip, the NHS is stingy with its CT Scans. I've only had two and I've got a lot going on in there. Don't want to boast but I would have thought I was relatively medically interesting.

The first one was on the 15th September last year. This was granted after 5 months of severe abdominal pain. I think they were trying to stop me whinging. The results took ages to come back. They were so shocked to find a massive tumour in my pancreas and surrounding organs that they all had to check with each other. I suppose they were expecting something a bit more imaginary. 

Yes I'm bitter, yes I'm angry. I just say that as some of my readers seem to be running away with the idea that I'm Buddha-Like. Not got there yet.

I started chemo-therapy at the beginning of November. The oncologist said I could have a scan after 3 cycles (6 weeks) to see if it was working. Soon after, this promise was expunged from the records. It was replaced by a directive to stop asking questions and do as I was told. 

So to get my second scan I had to do an Oscar-winning performance including heartfelt interest in my own life-span, emotional appeal, laser-like logic, crying and sulking. Eventually I was granted a CT scan on the understanding that I was a rash impatient fool.

I got the results last Wednesday and was told that my tumour was the same size as on the 15th September. Meh. Could be worse. I was hoping I'd shrunk it to size of a pea just by being marvellous. 

But then I heard the dread words "We found something else". Something told me it was not a good thing e.g. a bag of jelly beans. 

A blood clot in my spleen. Great. A new sinister visitor to the evil party in my tum. I think the clot must have its own blog post.

Laterz