Category: Personal

A Four Cancer Couple – No News Yet

~ quantumdreamer ~ Leave a comment

The probability of two people, a couple, being diagnosed and treated for four cancers {two each} by the age of sixty and currently still alive is not high. Especially given one of those cancers is a rare incurable one. So, when I say that we are more experienced with cancer than average, I am not lying nor bragging. It is possible that we might add a fifth cancer to the list soon. There is no news yet on the lung CT scans. As a precaution I have entered the Euromillions draw for tonight.

I do not want a full house or a royal flush.

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I can generally stave off conclusion longer than most and am not overly prone to catastrophising. Being in a vacuum is not entirely to my liking. I can wait until a week Friday when we have a scheduled GP appointment. One of my “coping” mechanisms is investigation and learning. I read around the subject as preparation and will go to the length consistent with my academic background in a prior incarnation {this life}. One can add two and two and come up with three, but I have not. I am as ever curious. I have learned a fair bit, enough to worry a doctor.

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In the social security office today, the woman asked me if I had a smartphone. I said yes but that I do not use it. I said that I was a little Jurassic. She suggested downloading an “application”, whatever one of those is, to apply for a new social security card. I have found a new Crusade. That is to demand ways of doing things which do not use satanic smartphones or demonic applications. That way I will not be subject to Trumpian tariffs on semiconductors.

I have been thinking about getting a dumb-phone as a protest.

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The French administration system even frustrates the French. They could save shit loads of money and significantly reduce the budget deficit by getting doggy-boy Musk to slash and burn. However, the unemployment levels would soar. The national mental heath and blood pressure levels would ameliorate.

I / we are in a bit of a limbo, which is an odd state for spring.

I speculated that this year would be a minus nine, lack of completion, year. The various wars are no where near resolution and will drag on for months despite the show-boating efforts of the orange very stable genius.

Our limbo is a comfortable one. So far there are no cluster bombs falling on Brittany.

There is food and water and heating.

Thanks to the four cancer status our pharmacy is well stocked.

Hmnn…

The Illusion of Communication

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Shaw suggested that the primary problem with communication was/is the illusion that it is taking or has taken place.

People rarely bear this in mind. They tend to imagine and assume. They can imagine communication to be good and effective when it is anything but.

There is a big problem in groups. Communication within a group feels like communication has happened but communication outside of the group has not even started. That decided in a group is rarely discussed or conveyed outside the group. Acceptance and agreement is assumed outside the group because consensus has been arrived at in group. It can be a huge surprise that no inclusion outside of group has ever happened. It is a group-mind illusion.

We might call this the crony problem.

As a speculative example. It is possible that health care professionals are discussing my case amongst themselves and maybe one day, someone will have to present it as a fait accompli to me. I will not have been involved in the discussion and therefore very unlikely to trust or accept the fait accompli just because someone said so. If I feel by-passed or ignored then my response is unlikely to be compliant-acceptant. Because discussion has occurred within peer group the illusion of communication is solid and held to be true perceptually. There is in this case a national and language barrier to boot and add icing. Inter group consensus amongst the French is important to them as far as I can see. Foreigners are less important.

I have noted multiple variations on this theme over the years. Where “they” discuss me, maybe conclude and then never even mention it to me or check their understanding of me with me. I am not being paranoid. I have anecdotal evidence in a number of cases.

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Last Monday I had a CT scan of my chest and lungs prescribed by a lung specialist. Given my asthma, COPD and past history as a smoker, this is not a routine low risk screening. There are some results in my spirometry which need an explanation.

I am yet to receive the narration of the results from the consultant radiologist.

I have had a week in which to down load the images, start a loan of some medical CT imaging software and investigate the CT data. I have access to fibre broad band and can do AI image searches on CT snapshots. I have used the software to measure the dimensions of the (hopefully) bony growth on my thoracic spine and can see that it impinges upon my right lung. {This explains a slight niggle I have had there for a number of years.} I can read articles in medical journals like “The Lancet” and have a fair understanding of the gist.

I have watched videos of radiological grading of COPD, lung nodules and lung cancer staging. I have investigated diagnosis of the bony growth and it looks as though diffuse idiopathic skeletal hyperostosis (DISH) is the best putative diagnosis. I already know that this growth cannot be reversed. I have identified one lung nodule and think I can see where my ribs, broken in a rugby injury, have healed.

 I have no idea who is meant to follow up, if at all. I am in a vacuum.

Any subsequent conversation is unlikely to be aware or informed by/of the scope of my investigations. I’ll speculate that it will not be assumed to be thorough.

Any initial point of subsequent communication will have assumptions on each side.

I have asked that if there is anything important someone gets in touch. Silence suggests that there is no problem. This assumption could be fundamentally flawed in a clinically significant manner. People are busy and in medicine often pressure prompted. The body on the table in front of you is more important that the one in a computer file and the end of a telephone line.

The whole thing, like so many things here grinds to a halt of inertia. Who knows who is responsible or is in charge of taking this forward?

Loose…means that balls get dropped…and then it is very hard to overcome the inertia once more…

Laisser tomber – BOF….

Coming to a Head – Decisions

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Quite a while back someone suggested to me that I write a course on “Decision Making” and stupidly I accepted. Without blowing my own trumpet unduly, that course is widely applicable up to the very highest levels. But of course, no big-wig or big-cheese, would ever accept that they need to learn and otherwise be educated about their quasi-divine decision making.

I use this little slide to frame things.

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At the moment various indicators are incoming apropos of an impending decision.

I’ll speculate that I am way more decisive than average and that I am unafraid to make unilateral decisions. I rarely feel the need to discuss, chin-wag or otherwise chew things over.  This appears to surprise some.

To give an example.

A few months back I had a zoom call with a European VC I was acquainted with a long time ago. I was seeking clarity as to how the VC community might see me based upon my past enterprises and what to do with my current circumstances. He said that, based upon the narrative I gave him about a company I co-founded, I would be considered “difficult” to work with and that “French deals don’t travel”. He hinted at “reputation” but would not be pressed. On this basis I dropped any plan to look for VC funding to start a company and shelved the faint notion of a France based start-up. The omens are not good. There are barriers, showstoppers from the get-go.

One can not always know when one is aiding / advising a decision. It can be unwitting or conscious. One could be a deciding factor without having any idea thereof.

The recent CAT / CT scan data concerning a largely fused thoracic spine consistent with a diffuse idiopathic skeletal hyperostosis (DISH) diagnosis is a factor to add to the decision making funnel. There is no treatment, it will only get worse. This is a factor suggesting that house downsize increases in importance. This DISH will not ameliorate my COPD as the bony growth is already impinging on my right lung.

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Soon we will test the back to blighty notion with a visit to Jersey to see how it feels to be surrounded by people largely anglophone. This notion points at moving to a low-cost, less desirable, region of the UK property market. A significant contrary factor is the anecdotal poor state of the NHS. The French system has been very generous to us in terms of funding and accessibility to care and prompt diagnostics.

We are in a beggars cannot be choosers state in that we don’t have hundreds of thousands of pounds to pay for private healthcare. Things here are in motion and work well. Don’t fix what is not broken.

There are no real personal anchors for us here, to keep us tethered. A lot is due to happen in the next month or so and that is when the funnel will close. This blog and my patent are up for renewal, for example.

Things, whatever they may be, are coming to a head, or in other terms the funnel is starting to pinch. These funnels are unidirectional and not reversible.

The feeling is that “things” are coming to a head. The fact that I looked out the slide above is indicative…

Questioning Deity – Are You Autistic?

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Not long after I had my colon cancer operated on; I contacted a specialist in adult autism. I wanted to find out if I was autistic or had Asperger’s, albeit high functioning. The other day we watched Claire Taylor in a documentary called “Are You Autistic?” In that documentary a few people diagnosed with autism spoke of the phenomenon of “masking” in which they behaved in a manner so as to conceal their underlying autism. Said masking is tyring and can lead to burn out.  

I have a similar notion which is called chameleon. I can blend in, mimic and fit in for a while. I can be at home in a posh place like the Ritz or the Hotel New Otani in Tokyo. I can also go into a very rough dive / criminal pub and have a beer without fear.

One of the motivators behind my inquiry is/was the over-reaction to question and critique which I have experienced from the self diagnosed omniscient, pompous and self-important people over the years. Those equipped at birth with a penis are the worst at this over-reaction.

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Maybe they are just deeply insecure?

Maybe I have autism?

Maybe I simply fail to kowtow to socio-political order and the pecking-order held in mind?

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The specialist concerned, being a psychologist, wanted to know if my inquiry was about the cancer and dying. {See people make assumptions all the time!!} Because, I did not have enough witnesses about my pan-continental childhood and any extant parents, she was unable to complete the full diagnosis. She offered her opinion based on our conversation that I was not autistic. You could say it is/was moot. Either I am not autistic or I am damn good at masking. Place your bets.

It seems to me I keep coming across, mostly men, who react badly to me even if I am not challenging them. I could be delusional. There are a large number of observations where I don’t talk enough bullshit, pat backs and otherwise ritually sniff arseholes. Some how I am not laddie enough. It is so false and such a waste of time.

I have a hunch that I/we are in the fallout stage of one of these interactions. Face is very important so not a lot can be done.

One is not allowed to question deity and masculine medical deity in particular. It gets their hackles up.

Hey-ho…

I have started looking into alternative arrangements now…

Well, That Was a Waste of Time

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This morning, we got out of bed early, having set an alarm. We drove for 40 minutes for an appointment with an orthopaedic spine surgeon. We paid €90 before we even went in for a consultation. Pay first…

The hip surgeon had prescribed an MRI to check if there was a spinal problem. The results had been sent to the spine surgeon. The hip guy had intimated that there may be a back problem.

The hip man sent us to the spine man.

I saw the MRI image on screen. I have yet to see the full results or the write -up. The spine surgeon said that there was not a lumbar problem and said to go back to the hip surgeon. My hips are causing my back pain according to him. He was disinterested in the huge bony growth on my thoracic spine. A few minutes later we were back in the car with a chit to send back to the health people to claim for a part of the €90 fee. We drove 40 minutes back.

The spine man said go back and see the hip man for your operations, if you want.

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There was absolutely no need for a face to face based on that experience. I knew there was no neuropathy. We may get a referral to a rheumatologist. It seems so inefficient.

Back to square one methinks.

I don’t know if I am being pig headed, if there is some huge cultural mismatch or what. This yo-yo stuff is doing nothing for my confidence. Pass the hot potato…

I really don’t appreciate being dismissed and told there is nothing we can do. I already knew this but it is not exactly good bedside manner. I found out two days ago…about the bony growth.

I can see this all going badly tits up…

In the past I have seen this kind of thing and there is nothing you can do; it just has to play out…

What must be, must be.

Well, that was a waste of time.

And They Said I Was Stiff – 3d Visualisation

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I have been playing with the 3D CT data visualisation software…

It looks as though I have a boney growth throughout my thoracic spine.

Strangely it is mosty one sided. It is the white material in the centre.

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It is not a pretty thing to observe for one’s own spine.

The length view looks like this.

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It seems that my vertebrae are fused together.

It looks like my aim to dance lead for the Bolshoi will have to be put on hold…

Game Changer – Lung CT Scan

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It is a nice sunny day and before lunch you download the CT scan results from yesterday. There is no commentary.

You open them up in a data viewer and you see an anomaly.

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You do not need to work for SpaceX, NASA or ESA, in the rocket propulsion department, to note that something is wrong here.

You can see that the anomaly presses into the lungs on the left hand centre side of the image.

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And that the joins with the ribs are also a bit off having downloaded a free trial of a medical data visualiser.

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Quickly you come to the conclusion that whatever it is/was you thought you might have been doing is now wrong.

The game has changed.

In my crystal ball I see more medical appointments, scans and probably a biopsy…

The Beep-Beep Toad – Alytes Obstetricans

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Over the last few weeks, we have been playing a nocturnal game called “what is that sound?”. Around 11 pm when all else is quiet and dark we hear a quasi-electronic sounding beep spaced at ~4 second intervals.

It gets so that you wait for the next beep!

It is tad irritating when you are nodding off.

So, I have variously stopped the voltage getting to the external lights, the supply voltage to the LNB detector on the satellite dish, and the electrical volets. None of which made any difference. The beep-beep is not here during the day. Only at night. Electrical causes are ruled out.

Last night it sounded like it was coming from the rose garden. I went out to explore wondering if I would discover some hidden electronic device. No. It went quiet when I approached.

Having spent time in Zambia and Queensland I am more accustomed to weird frog noises.

A Google search this morning revealed The Common Midwife Toad!!

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This now adds to our wildlife tally with the two fire salamanders in the basement {vide sanitaire}. The slow worms are due to start leaving hibernation soon. Then we will have the grass snakes, some of which swim on the pond.

I don’t know if knowing it is a toad will make it easier to sleep. There is no electronic catastrophe pending.

We shall see….

Summer Job and Patent Decision

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I saw a summer job advertised for someone to help do tours of the local distillery. They wanted a trilingual person for two months over summer. Seems a bit of an ask…They are probably not all that common.

I have said hi and that I am interested. The demographic who might visit a distillery are probably not rabid smart ‘phone users or teeny gamers. There may even be the odd grey hair. Having said that, I am probably compatible. I have offered to help with the “franglais” translation into English for the web site. I could be DR X who gives the tour.

I’ll not hold my breath for a reply.

The quantum optics patent comes up for renewal in May. I have to decide if it is worth another ~£150 to keep it live. I could simply let it expire, fadeaway. I can’t really see a way of taking it forward to any kind of commercialisation.

I have had my MRI yesterday. Hopefully they can get the results to the spine surgeon for the appointment next week. Otherwise, there will be an iteration. Getting an appointment with a rheumatologist here is not facile. I need a referral. I am 90% convinced that there is some immune implication in my joint pains. It is not well received to suggest to an “expert” that they may have overlooked something. We may have to let them do their round(s) or inquiries before we get any meaningful traction. People have processes which you cannot always accelerate.

Failing that I could do a Zoom consultation with some private Harley Street type geezer in London for a few hundred quid. I have imagery which I could send electronically.

I’ll will be surprised if there is no immune component. When you put your arse in an MRI scanner you do not know what if anything they will find. There is an entirely new branch of medicine based upon instrumentation and not symptoms.

You never know what is around the corner.

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For some reason over the last day or so people from my undergraduate degree course have been popping into consciousness. I did briefly touch base on LinkedIn and then deleted my account, disappeared back into the aether.

The whole house move situation has been given added uncertainly thanks to Uncle Donny and his game-show tariff board. He missed his vocation as a corny game show host. The scores on the doors…

We will visit Jersey just to see how being surrounded by people speaking English feels. It will add a feeling to the variables. The bank in Paris want to touch base. Last year I asked about a bridging loan. We shall see what he wants / advises.

It is sunny here today…time to feed the stray cats soon…

CT scan of my lungs on Monday…looking for the evolution of COPD and possibly some kind of fungal aspergillus feature? Farmer’s lung would be another factor in the must move house equation.

I wonder how many people are sighing at the folly inflicted upon the world from the USA…It is a bit sad really…so unnecessary.

Is the great USA afraid of fair competition? Perhaps it needs to fill cauldrons with boiling oil and man the ramparts of fortress USA.

Make America Paranoid Again…

Hiatus and Nanna Houses

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This morning it is spring. The sun is shining, all the cats are happy and the two male ducks were swimming on the pond. It is quiet here.

Looking at the pond I was reminded of the annual clearance work which makes it a blank canvas for spring. It is clear, sooner or later I am not going to be able to do this. I thought to myself “was that winter longer than usual?” We are immersed in nature. Maybe now I could consider warmer climes.

We will need to downsize possibly to a house that is convenient for my (our) increasing disability. It is a when question. At the moment there is a brief hiatus in the medical appointments. I am due an MRI on Friday for my sacral/lumbar spine and a lung CT on the following Monday. We know there are antibodies to fungi in my blood. The CT scan will see if I have a colony in my petri dish lungs. If so, I will be on some antifungal or other, something ending in “ole”. My guess is that the pain levels are not sufficiently elevated yet to warrant any kind of operation. I don’t anticipate that anything can be done for me, anytime soon. I can self-medicate in the meantime.

I have had a look close to “parc y scarlets” for bungalows.  At first pass it looks feasible to get a property either disabled ready or easy to adapt, close to the South Wales university hospitals. Provisional feasibility is established.

There is a weird sense of waiting for something. Don’t know what. There is nothing pressing / urgent our end. There is a sense of need for change. It is not huge yet. It is a hint which may get larger or fade.

I think the world and humanity are lost. There is no sense of communal direction. The initiatives to ease climate change seem dead in the water, thanks to our cousins the other side of the Atlantic.  We must wait for genuine catastrophe before we, as a species, can be arsed to act. Which kind of puts an altitude recommendation on choice of nanna house, it must be 50 metres above sea level.

Every time I have contacted the outside world it has inevitably fizzled out and gone no-where. There is a lesson herein. The take home message is that I am by and large done. People are busy with what is important and pressing for them. Even if that is pissing about in social media. I have cast a fly and there are no takers.

At one level I suspect that some have unfinished karma. On another I know that there is no chance they are ready to even begin to face that “reality”. To me it does not matter if I am right or wrong.

Shit happens and then you die…

The blog is up for renewal soon. I could cancel it, bin it and erase various temporary email addresses, to make some “space” to see if anything new comes in.

Since we got fibre broad band, we now have a “fixed” line telephone. The other day it rang. We had no idea what the sound was. We looked at each other. It turns out it was Orange calling suggesting that we update out on-line answering service. Why? So far, I have made two calls to HSBC customer service, possibly in Bombay via UK. Nobody has the number…

Yeah it is quiet today… soon the witching hour lunch traffic might begin.

I will be making a batch of Teriyaki marinade this afternoon and doing some long overdue pruning…

The right to stay in France expires in under a year…need to keep an eye on that ball…