Category: Personal

Secondary Polycythaemia and Medical Buses

~ quantumdreamer ~ Leave a comment

When you wait for a bus isn’t it always the case…

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In the near future I again have a clustering of medical appointments. There are three the week after next. One of these is with an orthopaedic surgeon. Then later I get to see an anaesthetist and then the colonoscopy chimney sweep. After that it is prostate fun and games. Since it was a few years since my “chimney” was last cleaned, I anticipate a few polyps. Which will be excised and sent for biopsy.

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My Haemoglobin levels are at around 17.5 or higher.

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The blood results for HFE mutation have been sent to the GP and only they can give them to me. It is probably safe in my case to give them without narration. I won’t freak out. This is France and protocol is protocol. If negative {normal} then the consultant rheumatologist suggested JAK poly screening to explain the high haemoglobin, polycythaemia (erythrocytosis) results. If HFE mutation positive then I will be giving a pint a week of blood as haemochromatosis induction therapy. Because I have had cancer this blood will probably go down the drain, it is not good for vampires.

“Molecular genetic assays for the detection of the JAK2 V617F (c.1849G>T) and other pathogenetic mutations within JAK2 exon 12 and MPL exon 10 are part of the routine diagnostic workup for patients presenting with erythrocytosis, thrombocytosis or otherwise suspected to have a myeloproliferative neoplasm.”

The default diagnosis of secondary polycythaemia due to historical smoking, early stage hypoxia due to COPD and perhaps early adolescent altitude is the most likely. The JAK 2 screen is for some rare but serious stuff. Myeloproliferative neoplasm is not a nice phrase. It is a dot the Is and cross the Ts test. It needs a specialist prescription.

The blood results have not found a simple, normal, explanation for my osteoporosis.

The causes can be attributed to the Holy Trinty: Fat Fags and Booze. Although I am technically obese, I am also muscular, there is meat and lard. The GP may be able to shed some light on what is going on when they give me the HFE gene results. My calcium and phosphates are normal. They may suggest more tests, specifically liver, looking for fatty / alcoholic liver etc….

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I am not expecting things to be tied up or solved.

Sometimes it is just one of those things.

I guess the most important thing is that there will perhaps be clarity on the replacement hip situation. The if, where and when. Some decisions will need to me made, some preparation needed. There may be wood to chop and a gardener to secure for the time(s) when I am out of action.

Looks like a summer of fun!!!

What is your diagnosis, Bob?

~ quantumdreamer ~ Leave a comment

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I had a difficult night last night with a lot of pain. This usually happens after I visit Torquemada the physiotherapist. It settles down over the next few days and is generally much better because of his ministrations. He said, “let’s hope you don’t have even more pathologies.”

Some more blood tests results are due and I am sanguine about them. It took many months of rapidly worsening health for the wife’s Myeloma diagnosis. This after a very scary mis-diagnosis which had me contacting people assuming a strict time pressure.

My list of ills is relatively long and we could use Bob’s simple diagnosis. It is unlikely that there will be some overarching diagnosis which explains everything.

We can’t turn back time. And there are many things in life which cannot be fixed, solved or otherwise put right. Social conditioning suggests that an apology can make things better. An apology does not alter Karma and forced begrudging “false” apology makes things worse karmically speaking. If there is some genuine acceptance then that might take the sting out of the accrued karma, a little. What our parents tell us in kindergarten does not really work, “say sorry to Sally for nicking her Maltesers!!” It is a pretence often.

During the night I had a brief dreaming segment concerning Myeloma UK. It had occurred to me if we move back to get involved there. I have probably read more medical-disease-epidemiology papers than most. When I have interacted from here, I have come across a UK based parochialism, “that is the way we do things here!”  Best clinical practice in France, Europe and the USA is not followed due to the accountants at NICE. In a real sense if you do it well first time, it saves money instead of doing multiple rounds of cheaper less effective treatments.

Luckily the patent on Revlimid has expired.

There is a well paid career path in charity management and I am not entirely convinced that the high salaries are justified. I find the heavily PR oriented and sanitised Web presences a little unreal. I understand that they want to give hope, but they do airbrush reality. I understand that they are not aimed at the likes of me. They are often not very real and people revert to blogs and video from genuine human beings. Things need a human face not some corporate blah.

When I was looking for a job, I got interviewed for several board positions. Because I was a bit young and not one of the gang and all praising, I did not get the job. I was asked what I could bring. I said new ways of thinking, some energy and something fresh. Comfortable places with cobwebs don’t like that sort of thing. People in power although they like the theoretical idea of a functioning challenging board, do not really.  Itchy back disease is prevalent. I am more than 90% sure that I would have brought, eventually, positive change. I am very organised and good at process.

Apple carts do not like to be upset.

Sometime gatekeepers keep useful people at bay.

Anyway, only my alpha-globulins have come back low. Low alpha 1 can mean alpha-1 antitrypsin deficiency which can cause lung problems like COPD and wheezing!! This can be genetic…

Both alpha 1 and alpha 2 low can mean liver problems.

What do you reckon Bob?

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Social Blurring and Status Problems

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During the night I came up with this term “social blurring” to try to verbalize something which has seemed difficult to / with me in my social interactions. That is behaviour within the common social-conditioned view of the world. It is surprisingly difficult to put into words.

One could say that I do not have the “proper” respect for social position and authority. Nevertheless, I am law abiding, these days. I am pretty sure that I have put noses out of joint among those who consider themselves higher, better, more powerful than me.  I am not prone to arse licking or sycophancy. I do not play the itchy back game in a transactional sense.  I do not curry favour nor do I butter up. It is possible that this has been noted. People have gotten hoity-toity with me when I have not shown enough respect “due” to their position in society. In some cases, this has caused a punitive response, particularly when I was a precocious graduate student. I have reason to believe that this detrimentally affected my career. To me it is no big deal if someone is a famous Prof, a CEO or a King. I see the person and not the status.

Clearly there are social “problems” inherent in this attitude. A mere pleb did not ought to think like this and perhaps needs reminded of their position on the ladder of life. I do not appreciate my position in “the” pecking order as a serf.

Various people have said things to me which made little or no sense to me but seemed to make sense to them.

My mother, from the Rhondda valley, said that I behaved “to the manor born”. Which meant that I was a bit posh and at ease in posh places like expensive hotels and restaurants. Nchanga Consolidated Copper Mines paid for four years at an English private preparatory school. I had an itinerant childhood and thus became an adept chameleon. I never had a sense of not belonging in a posh place. I can walk into the Ritz and feel at ease. I have been on stage at The Royal Albert Hall. I can walk into expensive private homes and not feel at awe.

Twenty odd years ago Théun Mares said that I was an alpha male. I thought to myself what the fuck is he on about. He kept banging on about this and some wolf pack interpretation of status. It had never occurred to me that I am in any way alpha nor dominant. I have no desire to assert position nor have underlings. I do not need nor want to snarl to keep a pack in line. In this weird world view I am a lone wolf not a pack animal. I clearly do not exert or exude the boundaries others anticipate. I am not interested in being top dog nor will I be overly submissive either. I don’t get excited by the intrigue of power struggles, nor can I be arsed with them. As a consequence of not snarling people can take the piss. The boundaries are blurred. Some, so I am told, like clear boundaries and definition of position in pecking order.

When I was a lecturer, it never occurred to me that I had status and position, in that context. I saw myself as no better than the students and definitely not a font of all wisdom. I interacted in a manner similar to a third year graduate student with a first year graduate student. It was more working together than professing. When I left my job, it became abundantly obvious that there were elements of social positional power associated with that role and the institution in which I had been institutionalised. It was a big deal for some, whereas for me it was bog standard. The lines between staff and student were accidentally blurred. I saw them more as equals than underlings.

In a weird sense I am used to being listened to irrespective of social position, there may even be some residual expectation of that. This expectation is rarely met. I have mostly gotten used to it, though on occasion it can flare up particularly if the other person concerned is ignorant and yet adamant in their ignorance. Sometimes I fail to hold my tongue and I do not care what their social standing may be.

In general, I am not awed by social positions but may be socially awkward when in numbers. I just find the ritual sniffing or normal social interaction boring and pointless. This means that I do not satisfy apparent needs / requirements of others. I can seem like an odd fish. I have no need to brag and claim social ladder rung in consversation..

When I have had “power” I have not wielded it. Nor have I taken advantage of that power when I might have. Being a young man with a paper share value of £ 2 million has an impact on knicker elastic. I feel pretty sure in my self that I have been tempted by power and come out the other side relatively unscathed. I did not turn into a power crazed arsehole.

I keep coming back to a perception that somehow, I do not fit what others expect.

I do not see others as better than, higher than me. Nor do I see others as beneath me. I am no better. I may be more experienced and intelligent, but I am not above. It is a kind of egalitarianism which can make people uncomfortable. There are some who have deferred to me and others who are perennially spoiling for a fight as if to assert position in pecking order. A fight I have no interest in partaking in. It has been my perception that people who have thus engaged have failed to learn whatever it is that I might have taught them. The immediacy of perceived status and competition for it has blinded them. Some people want to bring me down, teach me a lesson.

Perhaps the overarching weirdness in this life has been the number of people who want to tell me something, argue the toss, try to convince me they are right and otherwise teach me.

“That’ll learn ‘im!”

It remains an unsolved mystery as to how and why others feel the burning pressing need to educate me.

Because I do not have strong demands or wants, I have been pliable and subject to manipulation. I rarely have an agenda in contrast to many.

On occasion people have looked to me to provide a lead, only later to undermine me when that lead has not been to their liking. I have come around to the idea that I like planning and envisioning way more than execution. I am certain that I am not cut out to provide any ongoing leadership role in a socio-political sense because I cannot be bothered with the social “niceties” and tedious transactional negotiations. I am not a sycophant nor am I prone to sycophancy. In terms of leadership, I can sustain that for very short terms only. Sooner or later its will go pear shaped because I am unwilling to play the “normal” games.

Quite how and why I was born with this set of self-perceptions may be due to prior incarnations, prior learned inclinations. The more I have meditated the less impressed with socio-political status and imagined kudos I become. The whole notion of “advancement” “position” and social rank escapes me. Even though for others I once had a little.

As far as I can tell my beingness and how I am interpreted by others do not match. There is nothing I can do about that. I have to reel myself in because if I let it go, fully, people might struggle.

I am socially a bit of an oddball. At first pass I seem OK, normal-ish. There is some blurring where social perception and shoe-horn expectation does not fit. My behaviour has been “status” inappropriate not in a criminal way, rather something which is mildly unsettling for others.

I don’t fit the social conditioned mould as well as a I might.

Genetic Counsellors and Cans of Worms

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I learned a new phrase today “genetic counsellor”. Apparently, at least in Canada, such things exist. I have been recommended to have the HFE gene test to see if I have hereditary haemochromatosis (HH). This for completion. Back in 1994 I visited this high haemoglobin “space” and was bled regularly at St Thomas’. Retrospect suggests that I may have had an ongoing health condition which was missed back then.

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They took an armful each time. 

This HFE mutation would provide a benign explanation for my raised haem and ferritin levels. My ferritin levels have been increasing with time over the last four years. I don’t really have many of the symptoms associated with the genetic disease. It is linked with the less benign polycythaemia. Which would require a wider more substantive gene panel test, so-called molecular oncology. The authorisation for this testing is probably reserved for specialists. Iron overload is not without consequences. It can “cause” cancer or be correlated with it. Medical literature often blurs correlation with cause.

The problem with all this new-fangled gene testing is that it can open a can of worms

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Needless to say, the genetics are complex.

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I would be a mutant of sorts…

The next stages are Iron MRI and/or liver biopsy. The latter does not sound like much fun!!

Liver disease is possible maybe even likely, but I am largely asymptomatic. My enzyme work was ok.

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The next stage of inquiry would be to look for myeloproliferative neoplasms which are rare, not lottery winning rare, but rare enough. Search of JAK 2 and other related things starts increasing the price. JAK 2 can mutate.

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“Mutations in JAK2 have been implicated in polycythemia vera, essential thrombocythemia, and myelofibrosis as well as other myeloproliferative disorders. This mutation (V617F), a change of valine to phenylalanine at the 617 position, appears to render hematopoietic cells more sensitive to growth factors such as erythropoietin and thrombopoietin, because the receptors for these growth factors require JAK2 for signal transduction. JAK2 mutation, when demonstrable, is one of the methods of diagnosing polycythemia vera.”

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The thing is looking closely at most people my age the chances are that you will find something which has gone wrong.

The French sites suggest that some kind of follow up is warranted because of my Iron status.

Not sure what if anything the GP will recommend….

The osteoporosis situation seems simpler to treat with some pills, supplements and vitamins. But could have an Iron cause.

Given that the haemoglobin situation has been ongoing for, perhaps, thirty years it seems unlikely that any new unpleasant things have suddenly taken hold. But the ferritin level has doubled since 2021.

There is part of me that thinks that I just let this all drop…The osteoporosis might have enabled the fracture of my femoral neck six years ago. I have perhaps been living with it since. Simple answer is to not fall over.

A few more pills is no big deal however…

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hereditary haemochromatosis – regularly being bled.

Not HH – Iron MRI / Liver biopsy —

Liver disease – it depends on what – treatments in absence of virus are usually diet and no booze.

Something fancy and esoteric – myeloproliferative neoplasms – massive complex can of worms

The French sites suggest that some kind of follow up is warranted because of my Iron status.

What is inside the can…?

Inside a Boomer and Assumptions

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A while back when we were trying to sell our house the young estate agent commented that we had loads of DVDs just like his parents. They were umbilically connected to their devices. Their default was to use a search engine instead of think. As an old git I can comment that they had no inkling as to what may or may not be inside a boomer, what that essence may be.

Around 40 years ago at Durham University, during a conference on high resolution spectroscopy of van der Waals molecules, I gave my first oral presentation concerning the paper-worthy results from my first year experiments. It was a tad precocious to speak amongst all those professors dressed in my black ripped 501s with buckled suede Doctor Martens, a short spikey flat top haircut and a Smiths t-shirt.

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My moderate hangover had to be negotiated. I made no mistakes and the talk went well. Later that evening I was “chatted up” by various profs perhaps looking to recruit in due course. My punk “fuck you” attitude was reeled in.

To use the time honoured phrase, the youth of today have no idea what it was like back then. How protest and rebellion were a rite of passage. People do not expect residual punk attitude. I was soon to become an evangelical vegan at that time. Meat is murder!

Last night we watched a short documentary on the Smiths who provided a sound track to various aspects of life, including my mid-nineties depression. “Heaven knows I am miserable now…”

People make shed loads of assumptions; they always have and they always will. There is an expression that “assumptions are the mother of all cock-ups”. {and clusterfucks} I have extended the vernacular so that it is up to date.

Even when people know that making assumptions is foolhardy, it seems that they simply cannot resist making them and assuming their accuracy and applicability. Checking assumptions is for many an anathema. People will assume how others might behave, what they will do.

My mother when asked to come to my second wedding said that it was too far away and difficult for her to come. My assumption was that her assumption was that she would be cajoled into coming.  After sufficient cajoling she would yield as if she was doing us the greatest favour in the entire world. Instead, I said OK fine and left it at that. She may have been waiting for me to change my mind and start cajoling. I did not. The wedding went ahead without us having to cater to her insatiable drama queen tendencies.

Sometimes assumptions can backfire “biggly” to quote Herr Trump.

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One of the assumptions in our modern day is that everyone is contactable, that they have contact details and because of the fear of missing out, they will never be incommunicado. People are eternally at “beck and call”. When I say that I do not use ‘phones people do not believe me. They think I mean “much” but I don’t. My mobile has had two calls in six months both of them test calls by the wife. Someone once said to me, that if I had any questions, I could call them. He may have imagined that I might. I “filed” his card without even looking at it…In my mind we would never speak again.

I suspect that in a cross generational sense we do not understand nor appreciate the difference in essence. Even within a generation a beige or a plastic may not get a goth, a punk or an indie. As part rasta in orientation I may not subscribe to the 80s “Wolf of Wall Street”. When I sat in the board room at Fleming Family and Partners in Dover Street Mayfair to discuss million pound funding deals none of the suits knew where I was coming from, nor did they care overmuch.

It is funny your true colours are on the inside and not the outside.

Reasons to be Cheerful – Iron Two and Three

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We heard on the news today that Netanyahu had a colonoscopy this morning. This means that he would have been on an industrial grade laxative protocol last night and this morning. He will have a sore sphincter and maybe, just maybe, he is now less full of shit. He has quite a few comorbidities. He is not renown for joviality, good will or a good sense of humour so the indignity of shitting his entire arse off may not have appealed to him. Laid out on a table with a metre long endoscope up your arse it is hard to be tough, macho and aggressive spouting bellicose propaganda.

Did you know that a single article in the Lancet can cost you forty quid!!

It turns out there is specialist research interest in excess bodily Iron in Rennes, particularly for rare Fe related genetic diseases. We just took the car to the garage and there was an advertising card “Jardin du Fer” so we are back roaming the streets and chanting “any old Iron” like pikeys in a white flatbed truck.

One of the guys from Rennes is a co-author:

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One of the problems and benefits of having been a researcher in a previous incarnation is the ability to scan-read to spot gaps in knowledge and then zoom in, on the off chance there may be a research proposal lurking. The primer paper suggests the following diagnosis flow chart. I am on the far right pathway. All genetic testing is expensive.

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On the basis of this I am possibly due an Iron MRI. Apparently, the presence of Fe changes the T2 nuclear relaxation time and by using various pulse echo sequences one can measure Fe content in the liver. One can also image Fe content relative to the spleen. The latter is more widely used.

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The Fe build up could be genetic, alcohol related or caused by primary or metastatic cancers. The gastroenterologist said they stopped following liver for metastatic disease five years after colon cancer. This being the most likely hang out for colon metastatic disease.

The corporeal symptom of hemochromatosis are given below.

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Hepatomegaly (Enlarged Liver) An enlarged liver is a symptom of underlying disease. It means that your liver is larger than normal. This may happen in response to an infection, advanced liver disease or cancer. Healthcare providers treat an enlarged liver by treating what’s causing it.

I have joint pain and have just added Osteoporosis to the fun list.

The default cause will be ethanolic, followed my smoking with my being a lard-arse a close third.

Maybe I am not special…maybe it really is that simple…

My research instincts say there may be something we are missing and have yet to find out about.

Reasons to be cheerful… Iron two and three.

Clearly, I Am the Problem – Neurodivergence

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Over the years I have encountered many reactive and defensive behaviours in my interactions with people, mostly men. It seems to me that I do not do the ritual arse sniffing in the way they expect. Nor do I play the laddish itchy back game with enough ego stroking. The worse reactions are from men around 40. By the time they get to 60 they are past most of the BS. I do not piss up the wall of the urinal in the correct manner, apparently.

Clearly, given that I am the only common factor in all this, I am THE problem.

Chris Packham has been doing a TV series on neurodiversity in which he gets people who are diagnosed with various syndromes to do a short film to portray their experiences to their nearest and dearest. Most of the “weirdos” seem interesting to me and fairly high functioning. They are not boring.

The gist is that many feel/felt stress trying to fit and comply with the harsh societal expectations.

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No matter how hard they tried they did not fit well and the “diagnoses” gave them a handy explanation for why. It brought relief and sense-making.

My own experience working with the diagnosed is that the worse thing “normal” people can express towards them is impatience and huff. If people are impatient, it causes fear and upset. It leads to internalisation and makes any attempt at expression far worse and more dreaded. Impatience could be said to be an enemy of neurodiverse inclusion. Impatience is the start of a far from virtuous circle.

“You should not be like that. It ought to be easy. Huff!!”

This is the foundation stone of cruelty directed at the different and the stick used to marginalise them. May be they/we are not the problem. Maybe it is the self-righteous and self-important “normal” people. These people who are highly impatient and immediacy fixated.

I know by experimental measurement that I am not neurotypical. I have measured my brain waves using a fast Fourier transform electroencephalograph. Mine differ in that there is way lower neuronal activity which I can also further silence.

It would be impossible to convey my state of mind in a film. Because “normal” people cannot handle neuro-silence and their internal dialogue would start to chatter. If you cannot be quiet mentally you simply cannot get it.

Felix, the stray cat, is unwell. We think we are in the palliative care regime. When I go to feed him and Gandalf, he gets under my feet and rubs himself against my legs. I have to pick him up gently with my foot and “throw” him out of the way. He thinks this is an ace game. Because of my arthritis I am not steady on my legs and stopping and starting is difficult. One day I may stand on him in a painful way.

There is no way that I can explain to Felix that if he is hungry the best thing to do is to get out of my way. Food would arrive quicker and with no less certainty.

It is very difficult to convey how and in what way one might differ. It has to be experienced personally to be fully grasped. All the rest is extrapolation or intellectualisation.

Upcoming I am going to be looking to have my hips surgically replaced. Already I am thinking about how I might behave so as not to get a strange reaction from the surgeon. I will not fit his mental models and there will be a disconnect. Yet I have need of surgery.

How much will I have to act and conceal and hide so as not to be THE problem?

How much will I have to reel myself in?

Is Preparation Bad?

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I tend to prefer to be very well researched and prepared for most of the things which I get “into” or approach.  I like planning and scoping. It does not matter all that much to me if what I scope ever has fruition or not. I like wide global views and to consider implications. Other people, it seems, like to wing it or at least try. I’ll speculate that my envisioning is wider than most. I probably research to an extent which is beyond normal.

I am pretty sure that my predilection for this has pissed people off from time to time.

In answer to my question, planning can be bad in a socio-political sense. Others don’t like it.

It might be soothing for me but it can get the backs of others up and make then a tad hoity toity. Being well prepared can cause dis-ease in others. It may challenge sense of control.

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In as far as I can tell I have put the nose out of joint for quite a few people who consider themselves experts and others who have had a bad experience of schools, and teachers. Self-important reactions are easily triggered. Planning by self can exclude input from others. People do not like having Ph.D. viva examinations from, me, Joe Bloggs who looks like a pikey.

People accustomed to being experts can be wary of the well prepared. It is easy to get very defensive reactions. Many are insecure in their knowledge.

I personally do not like to make stuff up on the spot because it can lack accuracy.

It seems to me that some people find my practice of preparation threatening in some way. I don’t need to talk things through to understand.

It takes all sorts…

It looks like I have gone and offended some people again…

phew…