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. 

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.

Cancer Treatment

I am not all that keen to post this, and not everyone will want to read it, but if it helps anyone then it’s worthwhile. These things need to be talked about. We can find interest and enrichment in the most unlikely situations. 

Until this year I thought I was a healthy and active seventy-something year-old enjoying jobs around the home, gardening, walking, music, and so on. Here I am along one of our local lanes. As you can see, we are not serious cyclists. 

Old git with bike (or git with old bike)

Then J found me unconscious and having a fit. I eventually recovered enough to walk out to the emergency ambulance and two nights in hospital. The only warning was swirling black and white patterns in my upper right visual field. An MRI scan found a small tumour in the occipital lobe at the back of my brain. This was causing swelling which led to the seizure. The occipital handles some aspects of vision and reading, hence the odd errors I’ve been making.

The tumour was successfully treated by ‘gamma knife’ radiotherapy in a single hour-long session. This focuses two-hundred low-intensity X-ray beams upon precise high-intensity spots. It involves the discomfort of having an aluminium frame screwed (literally) to your skull to keep your head still in the treatment chamber, and to plot the 3D coordinates for the treatment sequence. Otherwise it is entirely painless. It can treat objects as small as two millimeters across.

Unfortunately, the brain tumour was a ‘met’ (a secondary) from a small lung tumour. This gave me no symptoms. Without the seizure I would have had no idea that anything was wrong. Last autumn, we were walking up mountains in North Wales.   

Things looked bleak. At one point the word “palliative” was spoken. However, a positron (PET) scan revealed no other unusual activity except in the brain and lung. Some patients light up all over like a Christmas tree. Things began to look more hopeful.

I went through three months of chemotherapy. It was awful. Some days I was so sick as to wonder whether it was worth it. At one point I ended up back in hospital for two nights on a drip.

Then I had a month’s lung radiotherapy (although side-effects last longer). It was considered preferable to surgery in my case.

For me, radiotherapy was far more tolerable than chemo; just tiredness and mild discomfort. This was fortunate as some find it too painful to swallow without anaesthetic suspensions, and can even have to have feeding tubes taped up their noses. They put the fear of God into you in warning what could go wrong.

The worst part was having to travel Monday to Friday to Leeds and back every day for four weeks, where, with twelve linear accelerators, St. James’s Hospital zap around 450 patients a day. Their record is 750. People travel from all over Yorkshire.

As I was not allowed to drive, I was eligible for free Patient Transport. If you asked for early appointments, you usually get a private taxi. The return journey could be taxi, volunteer driver or a small ambulance, sometimes shared. With travel time, the 10-minute treatment including its 25 seconds of irradiation took at least three hours. Most days it was more: nearly six on the worst occasion. With Patient Transport you have to be patient.

Some drivers became regulars. I spent over ten hours sitting with one friendly chap in the Leeds traffic, talking about all kinds of things and learning Urdu phrases. He came from Kashmir in the nineteen-eighties without a word of English and is proud that his children have had the education he never had.    

I have clearly had several tens of thousands of pounds worth of NHS treatment and may well need more. I could say so much more about it: the endless appointments and tests, the CT-guided lung biopsy which gave me a pneumothorax air pocket and another night in hospital, the radioactive dye squirted into my bloodstream from a lead canister by a nurse in an anti-radiation suit, the wholesale consumption of pills, how the challenge is as much psychological as physical, and the effects upon family, but I’ll leave things there.

I’m well again now. I have even been out on my bike. It is now a matter of monitoring scans. How long can any of us say we have: 2023? 2027? 2032? I might be lucky, but no delusions.

These things happen. As my Yorkshire grandparents would have said: “It’s a bugger in’t it!”

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.