Politically Incorrect

Son gave a look of disapproval. I had used an unacceptable word (yet again!). 

Because of swollen feet, a side-effect of pills to inhibit Exon 14 tumours, it was becoming difficult to put my shoes on. I had been wearing mainly walking shoes for some months, but even these had become tight, and I had bruised the side of my ankle making it painful to walk. Shuffling awkwardly, I stepped down heavily and hurt my back. It took three inactive weeks to get better. In the meantime, I finally gave in to nagging advice from our resident family occupational therapist, and bought some wide-fitting, wide-opening Cosyfeet shoes. And cosy they are. I can walk around the village again.  

“I’ve had to get some spastic shoes”, I told my son. 

The thing is, “spastic” was once a perfectly acceptable word. It was not until 1994 that The Spastics Society renamed itself Scope, the charity for people with cerebral palsy. “Spastic” had become a term of abuse, and parents were being put off. Children would call each other “a daft spastic” for clumsiness or mistakes. Just as a word, it sounds effective and humorous. It actually means subject to spasms, and remains in medical use in other circumstances. “Scope” is neutral, but the Society lost public awareness. 

In contrast, Mencap, the society for children and adults with learning disabilities, continues under a name with negative connotations, but everyone recognises what it is. The name went through several changes after the charity was founded in 1946 as The National Association of Parents of Backward Children. “Backward” became another term of abuse. “Are you a bit backward?” was hurled at someone slow to understand a point. 

Many other terms have fallen out of use. Mongolism was the scientific name for Downs Syndrome. Cretinism was thyroid deficiency severe enough to cause confusion and physical changes. They were accepted medical and academic terms into the 1980s. I still have a small book by a professor at the university where I did my psychology degree, an internationally respected authority in learning disability, that contains a table setting out the legal and scientific uses through the years of terms used to describe ‘mental deficiency’, ‘mental retardation’ and ‘subnormality’ according to I.Q. It is interesting that ‘idiot’ denoted the lowest I.Q., with ‘imbecile’ slightly higher, and ‘feeble-minded’ and ‘moron’ above, which does not seem to be the pejorative usage today.

From Clarke, A.D.B. and Clarke, A.M. (1975): Recent Advances in the Study of
Subnormality. MIND (National Association for Mental Health), London. Page 5. 

Such terms were used to discriminate and exclude people from society, irrespective of ability. Until perhaps the 1960s, eugenics, sterilisation, and euthanasia, were openly discussed. Institutionalisation lasted even later, although, with support, many occupants could have lived independently. Alan and Ann Clarke did a great deal to alleviate this by showing what people could do, rather than what they could not. 

Then there are the labels for nationalities, ethnicities, and race. They were not always used maliciously. When a Canadian-born great-nephew turned up on leave during the Second World War, my great-grandfather said that this “Yank” (can I still say that?) had knocked on the door. It was a description, not a judgement. The family put him up for a few days, delighted to hear about their Canadian relatives, and it seemed to relieve some of his anxiety about having to go back to the war.  

Returning to the slang term for Americans, no doubt many will dislike it, and it wasn’t used accurately anyway. I dislike being called a Brit. I am British, or English, or from Yorkshire, but as Brit is now used widely in the British media, and by some British bloggers, I am not likely to win that one. 

National and racial labels are often used to stir up division and hatred. There is a Monty Python sketch about a television show called Prejudice, in which viewers are invited to come up with derogatory names for various nationalities, and contains a section called “Shoot the Poof” (although even Monty Python in 1970 steered clear of race). The sketch can be found online, but some will find it so offensive I am not going to post a link. On watching again, I still find it hilarious. Michael Palin as the awful show host is brilliant, but as with the comedy series ‘Till Death Us Do Part’, not everyone sees that the laugh is at and not with the holders of these views.  

I misused one of these words in frustration. If you saw my feet you would see why. I’ve got some spastic slippers as well now. 

Physician, Heal Thyself

Being quite tall, our kitchen work surfaces are a little on the low side for comfort. We would have preferred them to be higher, but they are against the long side of the kitchen which is nearly all window, so they couldn’t be. Recently, Mrs. D. has been experiencing twinges in her back, aggravated by chopping vegetables and other jobs. “Is there something we could put on the surface to raise them up a bit?” I asked. A bit later we found this raised chopping board from Ikea (their image).  

Her back is now much better. 

There you go! If you require advice about such issues, you should ask the husband of an occupational therapist. 

Ten Years

I started this blog on 11th August, 2014, which means it has been going ten years as of today. The idea was to write a kind of autobiography covering how life has changed in England since I was little. 

The changes are many. After the war we still had ration books, bombed buildings, gas lights in the street, and Prefab houses. Later, in Leeds in the 1970s, my job took me to banks, building societies, manufacturers, merchants, shops, publishing and entertainment concerns, and businesses of all kinds that packed the city and further afield. Nearly all have gone. You could take evening classes in almost anything, and there were four or five cinemas in the city centre. The Leeds trams were no more, but sometimes I had to use the trolley buses in Bradford. 

I then went late to university, which led to a new career near the edge of the computer revolution, and saw change as it took place. I suppose I played a small part in it. I also came late to having a family, which has been great fun. I wanted to write it all down. 

There were few readers at first, but when I began to comment more on other blogs a few years ago, and chanced upon this friendly community, things began to pick up a bit. 

At times during the last two-and-a-half years I thought I would not see this day. I was as good as told it, but I am still here. The next milestones are more fruits of the garden, my birthday, and then Christmas. And then we will be into 2025 and hopefully it all comes round again. Or will it? That sounds gloomy, I know, but it is what it is, and that is all there is to it. 

It does not get easier, as my comment and response rates are beginning to show. The list of what I can no longer do, am not allowed to do, or would be stupid to try, is depressingly long. My reading difficulties make blogging slow and difficult, and I have thought of giving up, but it is one of the things that keeps me going, and I still have posts to write. I enjoy the exchange of humour, ideas, and opinions, reading what others have posted, and writing creatively. I am amazed others read it. Thank you so much, everyone. 

Diverticular Disease

I don’t like writing about health problems, but if it could help or inform someone else it is probably worth it. 

A difficult week: exhaustion and weakness, stomach and abdominal pains, bowel problems, sickness, too tired to do anything, even television and Blogger. Dark thoughts. Five days and you are sure the you-know-what is back. Is this how it ends? 

Then a flash of insight. It is probably a diverticular flare-up. Everything fits. This is not just diagnosis by Dr. Google.

Until about 15 years ago I had regular colonoscopies because of my brother’s early death. The last two times I was given a standard feedback form with the box ticked for diverticular disease. No other information or advice. We wondered briefly what it meant and then completely forgot about it. 

Mild symptoms have occurred infrequently through the years, but we never made the connection and assumed it was just me. This time it was worrying because of the severity. And I had a similar episode only a month ago. 

I said it felt like how people describe irritable bowel syndrome. A bit later, Mrs. D. asked what was that box ticked on the last colonoscopy form? 

Apparently, almost all of us have signs of diverticular disease after the age of fifty, but usually without problems. 

If you don’t eat you get weaker and weaker. You have to work out what sets it off, and avoid it. You have to eat small amounts until it starts to improve. Energy drinks help: there are some excellent ones made at Tadcaster in Yorkshire, and Keighley. Landlord Dark is good. One plus is that almost everything they tell you about eating lots of salads and vegetables and fibre is wrong. 

I hope I am right. You often have to work these things out for yourself. 

It is something to consider if you have these symptoms from time to time. And, if you find this diagram revolting, on no account look for any photographs. 

Diverticular Disease

Mutations

This story on the BBC caught my attention because of its similarities to my own situation. 

My heart goes out to this young mother who, aged 33, has been diagnosed with cancer. After two weeks of “migraine”, she was persuaded to see a doctor, who immediately sent her to hospital. Two hours later, she was talking to an oncologist. An MRI scan had revealed 7 brain tumours, and a later CT scan found 3 in her lungs, which was the primary site. 

As I understand it, all tumours are gene mutations. She has a mutation of the ALK gene that produces a rogue protein that causes affected cells to grow uncontrollably. It can be controlled by a new wonder drug called Brigatinib which blocks the action of the protein. I have a similar but different mutation. 

An enormous amount of research is going into the genes involved in different kinds of cancer, and the precise mutations involved. In some cases, drugs can disrupt the growth of affected cells. More and more of these treatments will emerge in the coming years, but development is expensive. Drug companies charge thousands a month to recover their costs. Brigatinib is £5,000 a month; the Tepotinib I take is £7,000 (less confidential NHS discounts). It amounts to many tens of thousands per patient per year. The financial implications for the NHS and health insurers are astronomical.

Is it worth, say, £100,000 to prolong someone’s life for two years? For 10,000 new NHS lung cancer patients each year that amounts to £1 billion per year. What about other forms of cancer? What about other health conditions? What about other issues in the broader arena of health and social care? At some point, the answer will be no.  

Breasts

What a title to grab attention! I wonder what the hit rate will be. However, those here for salacious reasons (you know who you are) may be disappointed. This is not what you are looking for. It is about embarrassing side-effects of the Tepotinib medicine I take. 

And they truly can be embarrassing. It messes with your proteins and hormones to strange effect. In an earlier post I mentioned scrotal oedema (14th November). It has you rolling round like a bow-legged sailor. Fortunately, this has now subsided and I can go back to sea; well, walk around the village and do the gardening, at least.

But there is a still more embarrassing side-effect, which I would not be mentioning at all had it not been sorted: gynaecomastia. It translates from the Greek as “female breast”: man boobs.

I am not talking about a bit too much flab and fat in the chest department (you also know who you are; we think we do too), but something more uncomfortable. It took a month or two to pluck up the courage to tell the consultant I was a little sore around the nipples. A month later it was becoming painful. A hug from my wife had me crying out, and bumping against a door frame made me writhe in agony. I don’t know how you women manage. Breast feeding must be a nightmare. There were hard circular lumps under the skin and they were growing bigger. I began to worry it might show.

The consultant said it was not something he had come across with Tepotinib, but he did an additional blood test. My testosterone levels were right down. Both men and women produce testosterone and oestrogen in different proportions. My testosterone was around the female level.

Four months and four jabs in the bum later, I am relieved to report that it has gone completely. The jabs could have been at shorter intervals, but I went for a more careful approach.  I didn’t want to start acting like Rambo.

No further jabs needed. I now have a gel you rub on - no, not there - you rub it on your shoulders. 

“Testogel”, would you believe? Two pumps per day. Phwoar! 

You have to wash your hands thoroughly afterwards, and on first use prime the pump and dispose of what comes out. Quite a bit goes down the sink. I suppose somewhere there is a fish with a beard and a deep voice.

Wilson, Keppel and Betty

I call them Wilson, Keppel and Betty. They live inside my brain. I think they are three, but there may be more than one Betty. They are not the Wilson, Keppel and Betty some may remember, if anyone does, although, just the same, they sprinkle sand and scrape it around with their feet.

Betty, however many there are, is not too bad. She is not there all the time. She tries to make you forget things. Like when you know the name of the author of ‘Goodbye to Berlin’, but some cocky little sod from Edinburgh or Oxford shouts out Christopher Isherwood on ‘University Challenge’ while you are still thinking W. H. Auden, which you know is near but not quite right.

I can just about cope with Keppel. He makes your mouth slack and flobby, and blurs your words, but only when you are low on blood sugar. Others say they have not noticed, but that is how it feels to me.

No, Wilson is the worst. He used to put swirling patterns in my eyes. Dr. Hatfield tried to zap him away, but he came back. Mr. Thomson said he would cut him out, but he would not be able to cut all of him out, he would have to leave bits behind.

So Wilson is still there. He now blanks out a space just to the right of my point of focus, and if you can’t see the next             along a line of              then you can only read one word at a             rather than fluently. I should learn mirror-reading, right to left. He also moves words along, and up from the line below, and puts them where you are reading now, slows which letters slows things down even more. And, sometimes, he makes you look at letters for ages before you see what they are, and makes you write an M for a B, or a D for a P, or an S for C. He is a                        total                      mactarp. I have to get the computer to read things out, or Mrs. D.

They have stopped their sand dance for now. So long as I keep taking the Tepmetko Tepotinib they will be quiet. They don’t like it. It makes them ill. It makes me ill too, but not as ill as it makes them. Dr. Brown says that one day they will decide they have had enough and do away with me. It might be this year, but we thought that this time last year, so who knows? Perhaps they realise that if they do away with me, they do away with themselves as well. Mactarps!

https://youtu.be/pkhJpr2zR8s

Exon 14

To paraphrase "GPs Behind Closed Doors", this post contains challenging medical issues.

Exon 14 sounds like a science fiction film. As little as ten years ago, it could well have been, but actually it is real.

I have something called the MET Exon 14 skipping mutation. It alters a specific gene, the MET gene (mesenchymal-epithelial transition) so that affected cells produce an abnormal protein which makes them grow uncontrollably.

The mutation causes lung tumours. It affects mainly smokers, but I put mine down to dirty Leeds in the nineteen-seventies when large numbers smoked, and offices, buses, cinemas, pubs and the shared houses I lived in reeked of a blue haze that stuck to your hair and clothes so much that you failed to notice. Leeds was also full of traffic fumes and pollution from coal fires and industries, and my accountancy job involved hours walking round warehouses, mills and factories where there were all kinds of dust and chemical vapours. The cause on my health record is "significant passive smoking". 

I was entirely symptomless until I had a seizure. Perhaps a routine chest X-ray might have detected it sooner and saved me a lot of trouble, but it was as good as impossible to get one during the covid lockdown, even if I had thought to request one.

Diagnosis begins with a CT-directed lung biopsy. You lie face-down in a CT scanner while a surgeon positions a thing metal tube into your back, through which they can then cut out and remove a small piece of tumour tissue for analysis and gene-sequencing. It is not a comfortable procedure. I wondered what was the cold liquid running into the back of my throat, which I had to spit out on to the scanner table. It was blood. We don't normally realise how cold the insides of our lungs get.

Gene sequencing is only the first part of the science fiction. There is a targeted therapy. The Merck drug company have licenced a chemical called Tepotinib (trade mane Tepmetko) in the form of a daily pill that blocks the abnormal protein, and slows down or stops the tumours from growing. It is a high cost treatment; I have heard a figure of £7,000 per month mentioned, but thanks to the NHS I do not have to pay.

Surprisingly, it is a relatively simple chemical - a hydrochloride hydrate of C₂₉H₂₈N₆O₂. I imagine that in some parts of the world they ignore the patent and make it themselves for a few pence per pill.

I have had other treatments too: chemotherapy which was awful, lung radiotherapy which was little trouble in my case, gamma knife radiotherapy which pinpoints and zaps small brain metastases, a brain op to drain the cyst that gamma knife left behind, which was scary. All over a year ago.

The side effects of Tepotinib are difficult, especially oedema (fluid retention). If you get cold it takes ages to get warm again because it is the equivalent of having 20 pounds (9 kg) of cold water bags strapped around your limbs and body, and, believe me, you would not want to have scrotal oedema (or vulval oedema I imagine, but don't know because I don't have that).

I am OK. It is but a scratch. I've had worse. None shall pass. I am still here.  

So, not only have we mapped the human genome to identify the 25,000 or so genes of our 23 chromosomes, we can gene-sequence malfunctioning cells to pick out a defective gene, understand its mechanisms, and construct a chemical to block its actions. To those of my generation, even the technologically literate, that really does sound like science fiction.

New things like this are coming along all the time. It should give hope to those who might become ill in the future.

Morbid Statistics and the NHS

I don’t know whether the numbers that follow are of any significance whatsoever, but it occurred to me recently that, in terms of years and months, I am now older than the age at which my longest-lived grandparent died. 

Of my parents and grandparents, only my father lived longer. He made it to 85, but as my mother died at 62, their average was 73.5. 

My father’s parents fared less well. They lived to 66 and 58. My mother’s parents lived to 73 and 56. So, my four grandparents’ average is only 63. Taking my parents and grandparents all together, the average is 67. By these statistics I am doing well. 

Adding my great-grandparents into the mix changes the overall average very little, although within each of the four pairs of great-grandparents, one lived to a good age, the eldest to 84, whilst their spouse died considerably younger, the youngest at 43. So, half of my great-grandparents did very well indeed, and half not. Three were still living when I was born.

I don’t know what weight to give to my aunts, uncles, cousins and brother, but some of them died very young. My brother only made it to 36. 

You think about these things far too much when you have a life-shortening illness. To be frank, when sowing my beans and tomatoes earlier this year, I wondered whether I would be around to eat them. It almost bemuses me I still am considering what I was told eighteen months ago and a crisis this January. As for next year’s crop, well, you never know. 

I am still here only because of the National Health Service. By any reckoning, I have had well over £100,000 worth of free treatment. Some of the pills I take cost £115 each, and I take two every day. That’s £80,000 a year for a start. To each according to their need, from each according to their means, is how the NHS is supposed to work. I would much rather have no need at all. I spit in the face of arguments that the NHS would be better run by private capital. There are too many examples of how badly that can turn out. The NHS does the best it can despite underfunding and underpaid staff. It needs more money. We spend less on health here than in most other comparable economies. The problem is that those with the means are not asked to contribute enough. The better off, like me, must be persuaded to put more into the system rather than fuelling climate change and ramping up asset values.

Laid Up

We enjoyed decorating son’s bedroom together. It was like thirty years ago when we first moved in. We painted the walls and the woodwork, replaced his football border with a nice flowery one, got the pine-framed bed out of the loft and bought a new mattress. We dismantled and lost his gigantic desk under the bed and now have a guest room. He said we had turned it into an old people’s bedroom.

Most of his stuff has gone to his flat. You would not think so from how much was left. The word ‘pillock’ was mentioned several times. There were A-level, university and postgraduate course notes and books, the empty boxes for every gadget he has bought in fifteen years, a six-feet tall cabinet of DVDs, and books, books and more books shelved double depth. Kids have too much money these days. 

The number of books is astonishing, and he has read every one without a single crease to the spines. No one else was allowed to touch them.  

He did then help sort paper for recycling, documents for shredding and books to go to Ziffit which I heard about through Sue in Suffolk’s blog. They pay next to nothing – you do well to average a pound a book – but it’s better than the charity shop, assuming you can find one to take them at the moment.  

How quickly things can change. One day you are decorating bedrooms, lifting furniture, washing cars and going for country walks, and the next you are crawling on your hands and knees to the bathroom. I don’t know how, but I hurt my back, both upper and lower. Comfortable positions for one were agony for the other. To make matters worse, I then overdid the Ibuprofen and messed up my stomach and could hardly eat anything for a week. Ambrosia will be delighted with their sales this month.

Nights have been spent in the new ‘guest’ room, impatient at the slow pace of recovery. I’ve read the spines of son’s remaining books, and renewed acquaintance with Rusty the Pony who I bought on impulse when Mrs. D. was expecting. Rusty’s friend, bought at the same time, a texture-feely caterpillar we named Snake, was sucked to destruction, but Rusty and some of this other friends survived.  

Who are all these writers: Brandon Sanderson, Robert Jordan, Robin Hobb and George R. R. Martin? I could also mention Scott Lynch, Patrick Rothfuss, David Hair, Tad Williams, Joe Abercrombie, Adrian Tchaikovsky. Only about half of those he has kept are in the picture. Apart from the history books at the bottom, it is nearly all epic fantasy and science fiction. Then there is Stephen King who throws in extra horror. How can anyone write so much waffle – sixty-four doorstep thick novels? I’ve never read any of these authors despite their enormous popularity. George R. R. Martin, for example, wrote Song of Ice and Fire which became Game of Thrones. Much too violent for me.

I suppose it is only like in my day when I enjoyed reading through the science fiction shelves of the public library. Then it was Brian Aldiss, Ray Bradbury, John Wyndham, Robert Heinlein, Isaac Asimov and Arthur C Clarke. They had a bit more mid-twentieth century reserve and decorum.

At random, I picked up Dreamcatcher and began to read, appropriate as King explains at the end he was in pain recovering from an accident when he wrote it. I know how he felt. Not that I read to the end. I managed about fifty pages before deciding I had little curiosity about four guys with telepathic powers, and not much liking for their characters. From the synopsis on Wikipedia I avoided quite a few nightmares. Most likely, it’s me that’s boring. I never had much time for Tolkien, either.

POSTSCRIPT: I subsequently realised that I hurt my back during a seizure of which I have no memory. This was the first manifestation of my illness. 

Sebhorreic Keratosis

Compared with other bloggers recently, I feel like Brody in Jaws, when the other two guys are showing off their hideous scars and he secretly looks down at his own, perhaps an appendectomy, and wisely decides it’s not impressive or gruesome enough to reveal. Except I’m not that wise.

Sebhorreic Keratosis: otherwise ‘thing-gy’, with a hard ‘g’.

I had this thing-gy on my face. I didn’t think it was too bad until I saw pictures of a concert I was in and realised how prominent it looked, even though I was hiding in my customary place at the back of the stage. Worse, I thought it red until told it was brown. They look the same to me.

I think my family had become used to it and didn’t notice any more. I zoomed into past photographs to see how long it had been there. It appeared as a small mark around 2005, and by 2018 had grown to a centimeter across. It almost doubled in size over a year.

I told the doctor I’d come about this thing-gy. After prodding, wiggling and stretching it, he pronounced it sebhorreic keratosis, not easy to pronounce at all. I knew the first word from shampoo bottles. Head & Shoulders bottles used to mention sebhorreic dermatitis but they mention only nicer things now. The worst it gets is “visible flakes”. Anyway, the doctor said it was harmless but did I want it removed? It was only on the surface and nowhere near any facial nerves. A cosmetic procedure.

Around six months later I attended his surgery at the local G.P. practice. He injected some anaesthetic, commented how surprisingly hard it was, scraped away the tissue with a scalpel, and corterised it. Apart from a tugging sensation, scraping sounds and a burning smell, it was not unpleasant.

He left me to be tidied up by the nurse who had helped. She assured me that actually, if anything, despite a round charcoal mark, it looked much better now than before because it was no longer raised. Aren’t nurses wonderful! She was wearing one of those NHS polythene aprons too, tied tight, shiny and shapely.

Within a few days the beard hairs were growing through and within a few weeks it had disappeared completely. 

Unfortunately, six months ago it started coming back. There were two small brown raised spots at the upper and lower edges of where it had been. There was no chance of treatment during covid overload, but my cousin, who also suffers them and is a nurse, said she just puts wart remover on hers. I said the local pharmacy wouldn’t let me have any. “That’s because you were silly enough to tell them what you wanted it for,” she said. 

She pointed me to Boots where you simply pick it off the shelves. Cousin said get the strongest. I got the weakest: ‘Wartie’. The instructions emphasise it is only for warts and on no account should it be used on the face. I dabbed it on my face, on the thing-gy, daily for three weeks then leave for a week. After three months it has nearly gone.

Now, should I tell you about the epididymal cyst?

Another Health Gadget

I suspect at present we are in just as much danger of catching covid as ever. I don’t believe the numbers. People are mixing more. Several in our village have it. They’ve stopped bothering to report it. Many are turning off the app, assuming they had it in the first place. Even our elected leaders are bending the rules. It’s sensible to be sensible.

I read Piers Morgan’s account of catching covid at the Wembley football final. I’m aware he’s an arrogant know-it-all but he has my sympathy in this. Despite being fully vaccinated, he had an awful experience: high fever, aches, coughing; “definitely the roughest I’ve felt from any illness in my adult life” he said. He makes the fair point that without vaccination it is likely he would have been considerably worse. It may even have saved his life.

His respiratory consultant (lucky him!) said to monitor his arterial saturations and to seek help if they fell below 93%. 

Obviously, you can’t monitor your blood oxygen levels if you don’t have a gadget, so, for £16, I got one, just in case any of us at home catch covid. 

And when you’ve got one of these oximeters you can’t resist playing with it. I’m mostly somewhere between 96% and 99%. But what if you take a reading when you’ve been active or exercising (still 96-99%)? What does it show if you clip it on your toe (oh dear, a bit lower, I hope I’ve not got vascular disease)? How low can you make it go?

Did you know that if you stop breathing until you can’t resist any longer, and then push it a bit more by counting slowly to 10 before you breath in, nothing much changes except your pulse rockets up. Thankfully, you then breath in. And about thirty seconds later, when the blood gets to the end of your finger, you might have managed to get it down to 86%. Beat that!

Now, I wonder if it works with cats. Would it go best on Phoebe’s paw or on the end of her tail?

Brugada Syndrome

Some fifteen years ago, my youngest cousin had a cardiac arrest. His heart simply stopped. He got up during the night and was found downstairs on the floor in the morning. He had been absolutely fine the previous evening. He was thirty-one. The funeral was a wretched affair in pouring rain. 

His father, my uncle, died in a similar way aged thirty-nine. He was eleven years my elder, fourteen years younger than my mother. It was one of the few times I saw my mother cry.

Going back even further, my grandfather also died suddenly of heart failure at the age of fifty-six. None had any obvious warnings, although my uncle and cousin both experienced dizzy spells. Concerns that it might be some kind of inherited condition were not taken seriously until more recently.

In part, this was because of the very public incident involving the Bolton Wanderers footballer, Fabrice Muamba, who collapsed during a televised match in 2012. He could not have been in a better place. He received immediate attention, and, in another stroke of good luck, a consultant cardiologist attending the match as a fan ensured he was taken to a specialist coronary unit where he recovered. His heart stopped for 78 minutes and he received fifteen debrillator shocks.

This led to greater awareness of Sudden Arrhythmic Death Syndrome (SADS, not to be confused with Seasonal Affective Disorder, or SAD). There are several kinds – Muamba has hypertrophic cardiomyopathy – but taken together, SADS kills at least 500 people a year in the U.K. at the average age of 32. It is under-diagnosed, with some deaths probably put down to drowning, falling or road accidents. 

Two further cousins, half-sisters of the one who died, insisted on investigations. They were referred to the Inherited Cardiovascular Conditions Service at Leeds General Infirmary where they were diagnosed with Brugada Syndrome, an inherited condition which disrupts the flow of sodium ions into the heart muscle, causing abnormal heart rhythms. These rhythms are so infrequent as to be difficult to spot. Often, there are no symptoms at all. In other cases there may be dizziness or fainting. Sometimes, the first time it shows itself is through fatal cardiac arrest, often during sleep.

Because Brugada is an inherited condition, and there being no surviving intervening relatives, it was recommended that all the cousins be tested.

Now, having reached such an age that I would probably have dropped dead decades ago if I had Brugada, I am not particularly concerned for myself. However, I am occasionally aware of brief palpitations. Weeks can pass without anything and then I’ll get three or four the same day. It seemed sensible to be tested for the sake of my children.

Last June, nearly two years after seeing my G.P., a letter came from Leeds asking me to attend on two successive days – surprising as it was during the pandemic.

The first appointment was to get a Holter monitor: a phone-sized device to record heart activity over time. For the next 24 hours I carried it around and went to bed with its electrodes stuck to my chest. It had a button to press if I experienced any symptoms, which I did twice on feeling a few ‘flutters’. 

The second appointment was for further tests: most significantly a 12-lead electrocardiogram (ECG) and a transthoracic echocardiogram which uses ultrasound to look at the structure of the heart in motion. It was a relief to be told everything was fine (well, the blood pressure wasn’t on that particular day, but I wrote about that last year). Although these tests rule out a number of SADS conditions, they do not rule out Brugada. This requires a further diagnostic test: the Ajmaline provocation test.

The Ajmaline test aims deliberately to trigger the specific ECG pattern that occurs in Brugada. It does not produce the pattern in those who do not have Brugada. My cousins’ abnormal rhythms were observed only during the the Ajmaline test. After another ten-month wait, my name reached the top of the Ajmaline list in March. Again, it surprised me they were still testing during Covid, but as with any potentially fatal condition, it seems right to be doing so.

I thought it would be carried out in a clinic like the first set of tests. I didn’t expect to be in a hospital ward, in a cardiac bed, surrounded by seriously ill patients. The man beside me was just coming round after an angioplasty and stent operation. An older man opposite had been in since a heart attack some weeks earlier, and was waiting for the same operation the next day. A younger chap had a congenital hole in the heart, which had been causing his oxygenated and de-oxygenated blood to mix, not detected until his thirties when he had suffered a stroke. And there was I, apparently nothing wrong, occupying a bed for three hours, most of which was waiting for the effects of the test to wear off. It felt tactless afterwards wishing them good luck and walking out.

Basically, what they do is connect you up to an ECG machine and gradually inject you with Ajmaline to see whether it causes the abnormal Brugada rhythm. I had to sign a consent form. The specialist nurse practitioners who carried it out described the odd sensations you might experience, none of which I had, and the terrifying things that can go wrong, none of which they had never known despite carrying out the procedure up to a dozen times a week.

You get the result straight away. I do not have Brugada. They sent me a letter listing some of my ECG readings: the PR interval, the QRS interval, the QTc, the J point elevation, the V1 and V2 rSR patterns in the second and third intercostal spaces…   

Me neither! But it does mean that my kids should be all right and do not need to be tested. They also picked up my occasional brief tachycardia on the Holter monitor but said it was absolutely no cause for concern unless it becomes frequent or sustained.

None of my diagnosed cousins’ children have Brugada either. Apparently there is no gene mutation in the family, so where it came from, and where it has gone, remains a mystery. Some of my other cousins, even my late cousin’s brother and son, head-in-sand, have decided not to have the tests: “I’ve got too many genes already,” one said.

I’m glad I did get tested. In effect, I’ve had a thorough heart checkup and passed, all free on the wonderful NHS. Privately, it would have been done sooner, but the costs (three appointments, various tests, half a day in hospital, a follow up phone call) could have been prohibitive , leaving us worrying and wondering.  

Green Dog

This is Green Dog, a plaster model made by my niece over thirty years ago when she was six or seven. Why is it green? Because her father, my brother, helped paint it. Like me, he had protanopia. He would have thought it was brown. He died when my niece was eight.

Protanopics have difficulty distinguishing browns from greens because we do not detect all of the red component of brown. For the same reason, orange is sometimes seen as yellow or light green because the red component of orange is weak. Red poppies fail to shine out from fields of green, and red fuchia flowers look nearly the same as the leaves. Purple and mauve look blue. Our ginger and white cat is delightfully camouflaged against the lawn, especially if there are snow patches. I’d be completely stuffed if there was a tiger in the garden.

Green Dog looks quite normal to me. I only know it is green rather than brown because someone told me, and because I ran samples of the head colour through Name That Colour (https://chir.ag/projects/name-that-color/#55642B) which identifies it as a mixture of browny-gray-greens with fancy names like “Woodland”, “Kelp” and “Verdigris”. 

On the bottom my niece wrote “To Grandpa from C---”, with four hearts and five kisses. My dad kept it for his last fifteen years, after which my daughter had it as a reminder of her grandpa. It has been neglected and ignored since long before she went to university.

Recently, it was my niece’s birthday. She has reached an age at which she has been of this world for longer than her father was. We packaged up Green Dog and posted it off to her with a note explaining that he (?) had been feeling lonely and rejected and thought he would be better looked after back in Sussex where he was born, in a house with three lively children – three grandchildren my brother never knew. 

My niece had no memory of it. She had to decipher her own writing on the bottom to work out what it is. It is now in her display cabinet. There is a three in four chance that one or both of her sons will see is as a normal brown dog too.

EQUAL RIGHTS FOR TOES!

About thirty years ago, a John Phillips pointed out in a letter to the New England Journal of Medicine  (1991, vol. 324, no. 7, p.497) that while the fingers all have Latinate names, no such distinction had been given to the toes except for the big toe or hallux. The others were simply numbered.

To remind you, the names of the digits of the hand are:

• Thumb - digitus pollicis
• Index Finger - digitus indicis
• Middle Finger - digitus medius 
• Ring Finger - digitus annularis
• Little Finger - digitus minimus

To rectify this, and to preclude anatomical ambiguity in clinical situations, he proposed the toes be given the following names:

• Big Toe or Hallux - porcellus fori
• Second Toe - porcellus domi
• Third Toe - porcellus carnivorus
• Fourth Toe - porcellus non voratus
• Fifth Toe - porcellus plorans domum
  

 Quod conservis callidus.

Health Gadget

Recently, I went to Leeds Infirmary for medical tests: some of my cousins have been diagnosed with a serious, intermittent heart arrhythmia of hereditary origin and I need checks to see whether it is in my line of the family. There is a further test to come, so other than to say all looks well so far I won’t write about that now.

However, during the tests my blood pressure was measured at 189/87 millimetres of mercury, with a pulse rate of 83. The diastolic reading of 87 is not too bad, but, bluntly, a systolic reading of 189 is extremely high. It is classed as Stage 3 hypertension, a potential medical emergency!

In my defence, I should say that the measurement was taken about five minutes after a brisk fifteen-minute walk uphill from the railway station followed by a climb up five floors of stairs, that it had gone down slightly after half an hour, that I was typically anxious about what was about to happen and that I was uncomfortable in a coronavirus face mask, but really, I thought it best to respond to the letter from the G.P. I had been ignoring for a month and go for a routine blood pressure test.

That reading was a bit better: at first 167/83 and then, as I calmed down, 154/78, with a pulse of 70, which the practice nurse said was still classed as hypertension, but not at a level that would normally be treated with drugs. The diastolic 78 was, in fact, normal. I wasn’t just relieved, I was elated.

But, I should not have high blood pressure. I am active, vegetarian, have a below average body mass index, don’t smoke and don’t drink excessively, so why is it elevated? Could that also be hereditary? My mother used to be on what (in polite company) she called “wind and water pills”. Or am I, as some would say I always have been, of a nervous disposition? 

The nurse said it might be worth getting a home blood pressure monitor, so for £20 from Boots I bought the one pictured. As the cuff and instructions show, it is a rebadged early model of the Omron monitor they have in the surgery.

It has been well worth it. At one time, doctors would not have let you anywhere near a gadget like this so as not to “worry the patient”. My readings are coming out even better at around 142/77, and just out of bed first thing in the morning I managed 124/71 with a pulse rate of 56. Phew! That’s absolutely in the normal range.

Except, the American College of Cardiology and the American Heart Association have now changed their definition of normal from below 140/90 to under 120/80 (see source article). Well, they can just piss off.

Mrs D., by the way, is gloating over her reading of 112/64 with a pulse rate of 59. I know it’s not a competition, but that makes it feel like it is, one I can never win.

Uncle Jimmy

(New month old post) First posted 28th June, 2015. 1,600 words)

The life of an intersex man born in the 1890s

My mother always said it would have been better if Uncle Jimmy had been brought up as a girl. When I was older, she added: “You see, he didn’t develop properly when he was a little boy.” She also said: “His sister was completely the other way round.” 

Uncle Jimmy was not really an uncle or indeed any relative at all. He attached himself to the family just before the First World War when he crossed the Pennines to take a job in the local branch of the clothing and furniture retailer where my grandfather worked. As Jimmy had nowhere to stay, my grandfather took him home and asked whether they could put him up for a time. Jimmy soon found his own accommodation and later, perhaps surprisingly, a wife, but he remained a close friend of the family for the rest of his life. He appears in no end of our family photographs: a surrogate uncle.

“A jolly little fat man with a high voice,” is how my brother remembered him, “Uncle Jimmy Dustbin,” not his real name but a pretty good homonym. He had been slightly built in his youth. His army attestation papers show he was five feet two inches tall (157 centimetres) with just a 31 inch chest (79 centimetres). He must have suffered terribly at the hands of childhood bullies and may have left his native Cheshire to begin life afresh where nobody knew him.

He tried to join up for war service six times but was rejected because of poor physique. After being accepted at the seventh attempt, he found himself passed rapidly from regiment to regiment like a bad penny. He first joined the York and Lancasters, but on mobilization was transferred back into the army reserve to grow and gain strength. He was mobilized again eight months later but within another six months had been transferred to the Yorkshire Regiment. He managed three months there before being compulsorily transferred to the 5th (Cyclist) Battalion of the East Yorkshire Regiment. This was part of the Army Cycle Corps used for coastal defence work inside the United Kingdom. His situation seems to have improved for a while because he qualified as a signaller, but within a year his difficulties had returned and he was transferred to the West Yorkshire Regiment. A month later he was judged physically unfit for war service, permanently discharged, issued with an overcoat and sent home. Jimmy’s war was thus based in such far flung locations as Durham, Newcastle-upon-Tyne, Hartlepool and Aldershot. At no time did he see service in France.

Jimmy married while still in the army. He was almost twenty-five and his wife, let’s call her Beatrice, almost twenty-seven. They remained together for forty-seven years until she died. For some years they looked after one of Beatrice’s nephews but were unable to have children of their own. What Beatrice expected is not entirely clear, although she did once say to my grandmother she had little idea of what was supposed to happen on wedding nights, and remained just as mystified afterwards because nothing did. She seemed content to have settled for a marriage of crafts, hobbies and companionship.

Jimmy and Beatrice became grocers. Beatrice’s widowed mother had a corner shop in one of the town’s dense grid of terraced streets, so Jimmy moved in to help with the shop and eventually became the nominal owner. Beatrice did most of the work as Jimmy always found plenty of other things to occupy him. He became a churchwarden along with my grandfather, and a Sunday School teacher. He collected glassware and was a natty dresser, but his greatest joy was motoring. He advertised his services as an express courier and hence became one of the first in town with a private telephone and private motor car.

Uncle Jimmy with his 1922 ‘Bullnose’ Morris on an outing to Bridlington in 1928.
In the car (right to left) are my father (in cap), his sister (in bonnet) and Jimmy’s wife’s nephew.

His first car was a 1922 ‘Bullnose’ Morris. My father said that whenever his own family took their annual week’s holiday, in those days always to one of the Yorkshire coastal resorts, Jimmy would arrive in his car to join them for a day. On other occasions he would take my father and his sister on trips to the coast. They had a clear memory of one happy outing when they drove under the arched bridge between Bridlington and Filey where the railway embankment crosses the road, when Jimmy jokingly forbade them to shout as they passed through, which of course they did, their high spirited voices echoing back to them in the open-topped car. On another occasion he took my aunt for a ride in an aeroplane at Speeton airfield.

In later years, after my grandparents had died, Jimmy and Beatrice became surrogate grandparents, especially to my cousins. In fact they remember Uncle Jimmy and Aunty Beatrice by far the more clearly. They spent hours reading, singing, playing games and looking after them. Beatrice shared her jigsaw puzzles and taught them to crochet. Jimmy was the only one with the patience to feed to my elder cousin her breakfast in the way she wanted, one cornflake at a time, even though he was supposed to be at work in his shop. My uncle described him, in bemused admiration, as the only man he knew who had managed to get through life without working.

Eventually Jimmy and Beatrice retired from the grocers shop and moved for around fifteen years to a large house in a green and leafy part of town overlooking the river, but after Beatrice died Jimmy moved back to the same terraced street they had lived in previously, and was very lonely and unhappy. It was by then the nineteen-sixties. Society was changing and the street had lost its sense of community. Jimmy was a frequent visitor both to our house and my cousins’, arriving in his car, always a Morris. He showed a lifelong loyalty to the Morris marque.

Jimmy lived to eighty-one. During his last illness, unable to eat, he turned to my aunt for help and she told him she thought he should be in hospital. “All right,” he said, “but let’s have a cig first. We’ll have one of yours.” It was his last one. My aunt, a nurse, looked after him during his final days, and in dealing with his most intimate needs was disturbed to observe just how incompletely developed he was, “more female than male” she later confided.

Again, we were spared the details but some years ago, thirty five years after his death, I looked at Jimmy’s army service record in an online genealogy resource. It included Army Form B, 178A, Medical Report on a Soldier Boarded Prior to Discharge or Transfer to Class W, W(T), P or P(T), of the Reserve. Across the various sections of the form I was dismayed to read:

Feminism. Undesirability of retaining with hommes militesque. Congenital. Poor physique from infancy and puberty. Pain with equipment. Tastes and habits male. Married 12 months, no children. Enlarged breasts, female type. Poor general physique. R. testicle incompletely descended. Penis abnormally short. Embryonic pocket in scrotal line. Voice female. Was rejected 6 times on grounds of physique and accepted the 7th time. Discharge as permanently unfit.

And what of his sister, a back-slapping sporty woman who my mother said should have been brought up a boy. She also married but after several years her husband was granted an annulment. She then became a champion ladies golfer who represented her county. It was said she astonished other golfers by driving consistently long distances from the men’s tees. She spent her life organising competitions and golfing associations, and was still playing in veterans’ tournaments at the age of seventy. Did she have a similar congenital condition? We can now easily see that there were four other siblings who survived into adulthood. What about them? They seem to have produced few children and grandchildren.

Today, abnormal sexual development is much better understood than when Jimmy and his sister were born in the eighteen-nineties. For example, research into sex hormones did not make any real progress until the nineteen-thirties. The various conditions are now handled sympathetically and have a range of treatments. How very different from when Jimmy and his sister were young. What desperately miserable and lonely episodes they must have endured. Yet to us, Uncle Jimmy always seemed happy and jovial. He was kind and thoughtful, very much loved. I think we must have given him something of the family life he would never otherwise have had.

There was one last thing we could do for him. It was saddening to see his medical record on public display. Although British Army First World War service and pension records, if they survive, are now accessible through online genealogical resources, medical records are usually confidential. We wrote to the National Archives at Kew to ask whether it was possible, on the grounds of respect and decency, to remove the medical report from the online resource, to which they agreed. Genuine researchers can still go to Kew, look up the microfiche copy of his army service record, and find Army Form B178A included, but in the online version it is no longer there.*

In wanting to tell Jimmy’s sad and touching story, albeit with names changed, and in quoting from the form, I hope I am not indulging in the kind of prurience we want to avert.


* Unfortunately, since the original post, other genealogical resource providers have been permitted to scan the documents and it is now visible on several sites.

Brain Fog

Another blogger recently described being in a very familiar place but feeling he had never been there before. He was unsure of the way home. It must have been an alarming sensation.

I’ve had similar experiences: inability to think or concentrate; forgetting things; feeling lost; mental fatigue. Secretly, you think you might have dementia.

A particular incident stands out. I forgot where I had left my car. It was usually in one of three places. If early to work, I would go for one of two car parks nearby. If later, I would use another a ten-minute walk away. I always remembered which.

One evening I walked back to the wrong car park. I set off for the distant one but just before getting there remembered the car was in one of the others. Annoyed with myself, I turned back. But which of the others was it in? Was it in either? I could not remember. No, it was in the more distant one after all. I turned round again. Or was it? I must have walked there and back twice.

Confused, I returned to work and sat quietly for a time, perhaps half an hour. I phoned home to let them know I was late, without saying why. Eventually, I decided the car must be in the distant car park after all. After quickly glancing round the two nearer ones, I set off again and found it, by that time one of just a few still there. What a relief. 

It was not the only incident. There was the time I missed a regular turning off the motorway and drove for some distance without realising. There were two or three mornings I dropped the children at school and was flashed by other motorists for vacantly crawling along at fifteen miles an hour. I tried to make a cardboard model for my son but could not make sense of the instructions. Out on a work visit, I got lost for much too long in South Manchester and later sat in someone’s office unable to take in much of what they were saying (I made appropriate noises and hopefully got away with it). There were times when my walking felt awkward and disjointed. I fell asleep all the time: like, at half past nine in the morning.

I kept it to myself. You do. Although Mrs. D. did observe bluntly: “There must be something wrong with you when you need to go to sleep at half past nine in the morning.”

In due course I mentioned it to the doctor. I was there about something else but mentioned about feeling extremely tired recently. I didn’t tell him everything: I was too afraid of failing the “What year is it? Who is the Prime Minister? Can you read this address? By the way, what was that address I asked you to read five minutes ago?” examination. He thought it best to do a blood test.

And the result: underactive thyroid. He was surprised. I don’t look like an underactive thyroid. I tend to be underweight. It is four times more common in women than in men. Yet, I had high levels of thyroid stimulating hormone (which means the pituitary is trying to compensate for the underproduction of actual thyroid hormone). It should normally be between 0.4 to 4.0 milliunits per litre. Mine was nearly 10.

I have had to take Levothyroxine every day since. It takes several monthly tests and dosage adjustments to get it right, and then needs to be checked annually, but once it right is you become aware of odd things such as how brittle your nails had become, and that the outer ends of your eyebrows had thinned to nothingness.

That was fifteen years ago. It seems to be sorted now. Either that or I’ve still got it and am too far gone to know.

As the saying goes, every cloud has a silver lining. Hypothyroidism is one of the things that gets you free NHS prescriptions before the age of 60. It’s a bit of a cheek really. It is disturbing to be diagnosed with a “chronic condition” in your fifties until you realise it is hardly any inconvenience at all. Far more serious things don’t get you free prescriptions. Cynic that I am, I suspect that when the list of exemptions was drawn up in the nineteen-fifties, there must have been some government advisor with an underactive thyroid. 


Lots of other things can cause brain fog too, such as stress, lack of sleep, hormonal changes, dietary deficiencies, food allergies, medications and quite a number of medical conditions. For example, see: https://www.healthline.com/health/brain-fog. 

The Peter Rabbit Plate

Decided to stay in bed after not sleeping because of a painful throat and a constant stream of mucus running down inside threatening to choke me. What with shivering and various aches, I felt terrible. But Mrs D. cares for me well. She asked if I wanted anything. A cup of tea and a couple of plain oat cakes duly arrived. It was all I could face. The only thing is that when you are not well you are supposed to get the Peter Rabbit Plate. The oat cakes were not on the Peter Rabbit plate.

The Peter Rabbit plate spends most of the time in its original cardboard box and comes out only when someone is ill. You might know the story it shows: the one in which Peter has been naughty by sneaking into Mr. McGregor’s garden and eating so many vegetables he feels sick, and Mr. McGregor spots him and chases him with a rake, and Peter gets wet hiding in a watering can but eventually makes it home tired and frightened. Then, Peter is unwell during the evening so his mother puts him to bed and makes him some camomile tea; ‘One table-spoonful to be taken at bed-time.’ It is a suitable plate for someone who is ill.

So, there I was, really poorly, hands gripping the bed clothes to pull them up over my head just like Peter in the picture (except that my ears weren’t sticking out), and yet no Peter Rabbit plate. Anyone would think I was only pretending.

You won’t believe that I’ve never been thought ill enough for the Peter Rabbit plate. Even when I had proper flu and lost two stones in weight, or when I came home in pain after a nasty operation for an epididymal cyst, there was no Peter Rabbit plate. Mrs D. once got it. So did the children. But me, never!

The day I get the Peter Rabbit plate I shall have very grave cause for concern.