Disturbingly Different Outcomes

It was a music friend’s funeral recently. He died of lung cancer. There was much in common with my own situation. 

He was very fit, and in early autumn was walking in mountains in Scotland. He retired a year ago from his job as head of English in a secondary school in the Sheffield area, and had just started the second year of a Masters course in Creative Writing. But there the similarities end. 

In October, he noticed a slight shortness of breath when walking up hill and playing his flute. The doctor sent him for an urgent scan (unavailable to me during covid lockdown), and he was diagnosed with lung cancer. An early thought was to offer help with questions from our own personal experiences, seeing that is what I also have, and have had a wide range of tests and treatments. However, a day or two later, we heard he was in hospital after a stroke, and may then have had more. He died fifteen days after diagnosis. Fifteen days! He was 64. 

And I’m still here after three and a half years, struggling, but still here and hoping, with luck, to see 2026.

His cancer was in the plural membrane, not one of the lobes. 

Quick Health Update

Struggling with responding and commenting. Need another course of steroids, which should sort it out in a few days. 

Birthdays

October will soon be over, and we have put the clocks back. That should have brought two more birthdays because my brother (pictured) and I were both born in this month, but, tragically, he only made it to 36. Even his children have now lived longer, and I have been here over twice that, despite what the oncologists keep telling me. 

He would have been 70 this month. There was quite a gap between us. The explanation, according to my mum, was that she had a miscarriage two or three years after I was born. I don’t know whether it makes medical sense or not, or how she knew, but she said it was due to rhesus incompatibility. Mum had an uncommon blood group that sensitized her to mine, which caused future pregnancies of the wrong type to miscarry. 

My dad expanded the story many years later. It happened when we were on holiday in a caravan at Primrose Valley, Filey, on the Yorkshire coast. I don’t know how she dealt with the foetus, but she said she could tell it was a baby girl. I believe she spent a day resting in the caravan and then continued the holiday. No tests, no doctors, no hospitals. 

Georgina Pocklington’s Terrible Legacy

Another old photograph. It shows my maternal grandparents, her sister and husband, and four of their children, on a lovely day on the beach at Bridlington on the Yorkshire coast around 1936. Apart from the clothes, it could be this year. And, apart from the two men, all are descendants of Georgina Pocklington who I wrote about in June. You may recall she died aged 45, of what was essentially a poverty-related illness, a few years after her husband deserted her. She also left us a terrible legacy. 

The happy, smiling woman on the left is my grandma, and the bald man on the right my grandpa. She was born in 1899, and he in 1901. “She baby snatched him”, he said. Previously, she had been engaged to another he died in the war. My grandpa was just too young to serve. They would have been around 35 and 37 in the picture, but look older. Grandma went white very young, and like many of his family, Grandpa lost his hair early. 

The dark-haired woman at the back is my Grandma’s sister, Aunty Gina (named after Georgina Pocklington), with her husband in front wearing shorts. I liked them enormously, and have written about collecting loose road chippings on my tricycle for him to make a new front door step, and when older going after school to watch television. They would help anyone. He made new pelmets for us, and kept an eye on the house when we were away. They were a happy and contented couple. 

There are two children from each couple. The curly-haired girl next to my grandpa is my aunt, aged about 4. She is called Aunty Bina elsewhere in this blog (Aunty Bina’s Farm). In front of her is Uncle Owen, her older brother. The others, front right, are their cousins: the girl is Aunty Olga who in an earlier post described their village as a lovely place to grow up; I know much less about the boy, except he had 5 children and moved away. Not present is my mother, possibly looking after the family shop, nor her youngest brother who had yet to be born. 

Georgina Pocklington left us a legacy of cancer. I know it was her because she had children by three different fathers, and it appears in all three lines of descent. It could have come further back through the Pocklington family, but I suspect it was from Georgina’s unknown father. It would cost hundreds of pounds to obtain the death certificates to be more sure, but even that might be inconclusive because we would need to go back before registration in 1837. 

The women tend to get breast cancer around the age of 60, like my mother and her mother’s mother, or the men or the women tend to get bowel cancer slightly older, like my grandma’s cousin and son. Those who escape are prone to environmental cancers, like me in cigarette-smoky offices, houses, buses, cinemas, and pubs, and polluted 1970s Leeds; and one of Olga’s daughters who ran pubs for many years. Some have the misfortune to be affected much earlier, like my brother who got bowel cancer in his thirties, and one of Olga’s granddaughters who developed breast cancer at the shocking age of 30. 

Not everyone succumbs. My grandma suffered a stroke at 73, and both girls in the picture lived to a good age, Bina to 81 and Olga to 86. You can think the illness has missed a line, but then it crops up again unexpectedly a generation or two later. One of Bina’s daughters, i.e. my cousin, has just been diagnosed with breast cancer at 61, as was another of Olga’s daughters. 

When Bina dies, I wrote to Olga to tell her, and she telephoned me twice the same day, forgetting she had phoned once already. Foolishly, I told her, which distressed her. I wish I had simply talked with her again. It was the last time we spoke. 

Without getting into the complexities of the family tree, likely deaths can be seen in the descendant lines of Georgina Pocklington’s children to three different fathers before, during, and after her marriage. Another of grandma’s cousins, who was around the same age as my mother, died from breast cancer around the same time, and one of her nephews who was a few years older than me died of bowel cancer 7 years ago. Aunty Gina, the dark-haired woman in the picture, lived only to 67. Her husband, very distressed, survived her by just a few months. 

In a line of descendants from another cousin who moved to Horwich in Lancashire, the illness is widespread. One, a senior nurse, said some years ago that she thought there must be a rogue cancer gene in the family. But geneticists who have looked at it maintain there is insufficient evidence. 

Coming back to the picture, my grandfather’s family have not enjoyed better luck, although this is really for a different blog post. His father was one of just three from eleven to live beyond their early thirties, and he lost a sister in infancy and an older brother in the First World War, leaving him the only sibling. He then dies of a sudden heart attack in his fifties, as did both the son born after the picture and a grandson, in their thirties. And, Uncle Owen, who I just remember, he died in a military accident while on national service.   

I find it astonishing that one picture, a snapshot from a very different time, reminds us of so much.  

What a feeble, sickly lot we are. 

Sodium, Seizures, and Oedema

My last post showed pictures of the severe oedema I suffer as a side-effect of the targetted therapy that keeps me here. This says more about it and related issues. I’ll then shut up about medical stuff for a while. 

Since this started, I have had three seizures serious enough to put me in an emergency ambulance to hospital. Our GP advises you don’t need to call for help for “ordinary” seizures, just put in the recovery position to sleep it off, but when longer or more severe than usual, you do. The last, about three months ago, was a double one. I remember little about it, but apparently I had one seizure, recovered well enough to get up to bed, and immediately had a second. 

Looking back at blood tests, it turns out that, after each seizure, my blood sodium levels had been low. Doctors call it hyponatraemia. School chemistry reminds me that the symbol for sodium is Na, for Natrium, its old name. 

The normal level is 133-146 mmol/L. Mine are usually just there, or slightly under, but after seizures they have been around 125. Normally, we can cope with that, but my condition alters the threshold and makes me more susceptible. A sodium drip brings them back up very quickly. Last time, they even let me home the following day. 

A hospital doctor said not to drink so much liquid, and to stop the Furosemide water pills used to manage the oedema, as both these things deplete sodium levels. I took this on board, realising that all my seizures have been in the evening after a bottle of beer, or a pint mug of tea, or both. I don’t know how quickly blood sodium can go down, but it could be quite quickly. Hyperventilating seems to be involved, too. 

I don’t think they realised either how much fluid I had been drinking, or how little my salt intake had been. I had been taking in around 6 or 7 pints of liquid a day (say 3 litres). My one-pint mugs of tea were cut to half-pints, and out went the dilute fruit juice and late-afternoon bottle of beer, and other extra water. That is a reduction of at least 3 clearly identifiable pints a day to begin with (say 1.5 litres). As regards salt intake, we have always used minimal salt in cooking (our daughter complains), and when I developed oedema I was told to stop eating crisps and other salty snacks because salt exacerbates it. So, on the one hand, I am not to have much salt, and on the other my blood sodium level is too low! 

The changes were disastrous. The oedema went up massively, and I gained about 12 pounds in weight in three weeks (say 5kg). I was slobbing around like a seal on a sandbank, and could hardly walk up the stairs or garden, or anywhere at times. The breathlessness because of fluid around the lungs is the most difficult part. The inactivity makes you weaker and weaker. 

As I still had some Furosemide left, I began it again as an experiment, not even every day, and lost 8 pounds quite quickly. Our heat waves set me back a bit, but it has been agreed I can have Furosemide again, and, considering how much fluid I had been having, I don’t have to stick too rigidly to the 3 pints per day they said, which was impossible in the heat anyway. I was having headaches and confusion, classic signs of dehydration. The GP was very quick to remove Furosemide from my prescription and it has been difficult to get it back on again. They will not add what the consultant says, but they are all too quick to remove things. Anyway, common sense prevails. It shows the importance of advice from the consultant who knows and trusts you to be sensible, rather than a doctor doing a shift in a hospital. 

The main thing is to keep sodium within near-normal levels. The trouble is, you don’t know what it is without a blood test, and oedema makes those very difficult. They have often not been able to get any. When they have, the level seems to have been all right. I also seem to be making progress with the oedema again. I don’t want another seizure. It could finish me off.  

Oedema

Warning: medical images. 

Struggling. 

30 cycles (two and a half years) of Tepotinib. 

Oedema is a side-effect. 

This was about 10 days ago. 

It makes everything difficult. 

Not much commenting happening, I'm afraid. 

Streptocarpus Blue Leila

Otherwise known as South African Primrose. 

Split into three in March, and all have survived. I find the trick is not to give them too much water. That kills them off. Let them dry out completely and then water very sparingly and they will give a stunning display. They are not yet anywhere near their best. 

Neither am I, after a pretty desperate week, with a spell in hospital which knocked the stuffing out of me. I feel frightened and depressed at the hopelessness of my situation, and have not been here much at all. I have done a few things today, but it is a struggle to keep positive. A bottle of beer will help; maybe a Newcastle Brown Ale. They said to restrict fluid intake because of my low sodium levels, so maybe half a bottle. 

Hope to have a new post in the next day or so. 

RESPONSE TO COMMENTS: Thank you all for your positive support and comments on this post, and apologies for sounding so down. Things such as the Blue Leia provide interest to keep me going for now, but for the past week I have felt very much in limbo, a bit like in your final year at school when you are waiting to discover what will happen to you regarding jobs or continued education. I have to keep fighting. 

Brain Inflammation

I am in two minds about these health posts, and not everyone wants to read them, depressing subject that it is. On the one hand, I don’t really want to talk about it, but I have found similar posts by others helpful and informative. Doctors talk about symptoms and treatments, but they rarely experience them first-hand. Bloggers have. They share parts of their lives with you, and you are concerned for them. And, like with medical reality programmes on television, I suppose some of us wonder how we would cope in these situations. The supportive comments are therapy in themselves. Thank you everyone. 

It is three years this month since my health disaster kicked off with an unexpected seizure. Until then, I was walking regularly around our lovely local countryside and further afield, riding my bicycle through our quiet local lanes, swimming each week, driving to my favourite shop (Screwfix) for DIY parts, doing jobs around the house, gardening, playing concerts and ceilidhs in a band, and trekking up mountains on holiday in locations such as Scotland and North Wales. We made plans now that the kids are fairly independent. We were going to book holidays and visit friends and relatives around the country. Most of it had to come to an end. 

I now wonder how long I will be able to continue this blog. Some days it poses no difficulties; others seem impossible. The same with commenting and responding. It can sometimes take me ten minutes to make a single comment; there are often things I want to say, but it is too difficult, so I read but do not comment, for which I apologise, but that is how things are.  

The problems are caused by pressure from brain swelling due to inflammation. It causes mental exhaustion, and I have difficulty recognising letters and words, and using numbers. Thoughts don’t flow freely as they should. 

So far, the inflammation has been reduced fairly successfully by Dexamethasone steroids, and I have been a lot better within two or three days. In February when I last wrote about this, when the (then) latest MRI scan indicated changes, I was given a 20-day course of 4 pills a day (8 mg) for 5 days, reducing to 3 for 5 days, then 2, then 1. Two years ago, when things looked really bleak and I was sleeping most of the time and unable to concentrate on anything, I was told to start immediately with 8 pills a day (16 mg). That is a very high dose. That was when the nurse practitioner, who says things she perhaps should not really say, said the MRI scan looked “awful”. I appreciate someone with the confidence to say what they think, rather than giving options without advice. On a previous occasion when it was realise what I had, she said “I would not go down the lung surgery route if I were you”. I would not have sued the NHS if that had been wrong. 

Because Dexamethasone has a tendency to irritate the stomach, it is normally recommended to take Omeprazole beforehand for protection. I don’t get on as well with Lansoprazole which is an alternative. They both reduce the amount of stomach acid secreted. 

As I wrote in February, the scan indicated a blood clot, a new tumour, and increased activity in existing areas. Disheartening, to say the least, but it turned out not quite that bad. When more recently they were able to get a cannula past the oedema and obtain an MRI scan with contrast dye, which gives a clearer image, they concluded that the new “tumour” was in fact associated with the blood clot, and was being re-absorbed. However, less encouragingly, the existing areas were continuing to show signs of activity. This has been going on slowly since the start, although now held in check by the targetted chemotherapy. 

Some days ago I began to struggle with letter recognition again. When I started to write a comment on another blog, I was unable to locate a particular letter on the keyboard. I then forgot which letter I wanted, and then what I was trying to say, and what it was about. The comment was never made. But I usually know what is happening and remember. The comment was that not many yet realise that international trade tariffs will give a massive boost to the BRICS economies, and their eventual divergence from the Dollar. 

With a few Dexys left, I decided to take one a day for 5 days before it got any worse. It seems to have helped. I did not mention it to the doctors because all they would have done is ask me in for more pointless tests, and possibly kept me in all night, and most of the next day until a doctor was available to sign me free to go. It is like a prison in there. 

How many more times will it happen, and how often? Will I eat the tomatoes and runner beans I have sown, see our pears and apples this year, make it to my next birthday, and then Christmas? How long does it go on? 

I looked back through Weaver’s blog. By this time last year, she was posting infrequently after posting brilliantly every day for many years. In July, she announced her final post. In November, we learnt she had passed away. I may be on a similar trajectory, but her condition was different from mine. Some years earlier, her husband’s brain tumour gave him only weeks, rather than months or years, but his condition was also different. 

I can only stay positive and hope. A few patients on the internet say they have been on my particular targetted poison for over five years. There are not enough of us to really know.  

Chest Drain

Thank you for comments on the last 2 or 3 posts. I enjoy reading them but am finding it rather tiring to respond at the moment. 

What was supposedly one-day in hospital to drain fluid from my chest cavity turned into four, and almost five. On Wednesday evening at 07:30 p.m. they phoned to say can you come in tonight to have it done in the morning. We got there. In the morning they said that because I had been on blood thinner injections for 6 days they could not do it until the next day. On Friday they put a tube in my back connected to a bag and out came a litre quite quickly. They don't want it too fast, so stopped it for a while. Later in the day they took another half-litre]. It feels strange and uncomfortable to suddenly be able to exhale and cough more deeply, and painful. They kept me another night to be safe. On Saturday they were concerned that although all my readings were very good, (O2 99%, b.p. 119/65), my respiration rate of 40 or more was too high. Why was I still panting? Eventually they got 3.2 litres, plus what spurted on the bed and floor. 

Basically, I had not unlearned breathing habits used to cope. I also had a small pneumothorax air pocket. It meant another day of obs and X-rays. Oh, the tedium. It was touch and go, but at 9.30 p.m. on Sunday they said I could go home if someone collected me. Wife came straight away. 

Monday, back home, able to breathe and walk about without much panting, I felt very emotional all day. It has been a difficult week, for this and other reasons too. 

3.2 litres! Where had it all been? How to lose weight - I weigh about 7 pounds (more than 3kg) less. 3 days with what looks like wine making equipment in your back. I wonder if you can ferment it. Would you like a glass of my special wine? 

Not Well

I wrote this on Thursday but did not post. 

Struggling physically and mentally. 

Finding it hard to do anything. 

I fear the game may be up. 

Did well Tuesday: MRI, CT, and blood test. Very tiring. Wife brilliant getting me there for 9.00 a.m. Results will be informative. 

Have a post scheduled for tomorrow (Friday). But after that? 

Still hope to be here to see a million page views. Not far to go. 

On Friday I was going to call the help line, but they called me first. They wanted me at the hospital again, urgently. Was there all day, mostly waiting for more test results and discussions. 

It seems I have a blood clot and a new area of active tumour growth. 

I have been put on a 20-day course of steroids to reduce any possible brain swelling, and blood thinners to reduce the chance of further clots. The self-administered thinner jabs are difficult. They also want me in for one or two nights to drain the fluid from around my chest and lungs. Oh what fun that sounds, but it should make breathing easier. Consultant team will discuss results this week. It might mean more Gamma Knife. Am beginning to feel a bit better as the steroids take effect; it is usually fairly quick. And at least on blood thinners they might have less trouble getting a canula to work.   

Not happy. But they have not written me off yet. 

Have now caught up with comments on last posts. 

Metastatic Lung Cancer

Gamma Knife Radiosurgery (a precise form of radiotherapy)

Twelfth Night has passed, and 2025 is well and truly here. To tell the truth, I never expected to see it. 

When I had a seizure nearly three years ago, and was told I have metastatic lung cancer, and that life expectancy can be as little as three months, it was hard to believe. There were no symptoms and I was perfectly well. In the autumn we had been walking up mountains in North Wales, and my wife bought an electric bike to keep up with me on our local hills. But no one imagined I would still be here now. 

A relative said that the trouble with these things is that the treatment is often worse than the disease. Too right it is. You go through it in the hope of a cure. 

Perhaps I should have written more. Our late friend Weaver of Grass’s open and honest account of her ageing and illness was helpful as to how these awful things can play themselves through, as was gz’s (“ook?!”) account of her partner, “Pirate”. They give a human and personal perspective beyond the purely medical. I have written a little, but it seemed impossible to write about it as a whole without ending up with something too horrific to post. Every procedure is a gruesome tale. I hope the following is informative and not too insensitive, although this is not all of it. 

Take gamma knife radiosurgery (a very precise form of radiotherapy) in which a metal cage is screwed (yes) into your skull. It holds your head absolutely immobile during treatment. They want you in Leeds at 06.30 to fix it to your head, do an MRI scan, and take measurements to plot the coordinates for treatment. You might then have to sit with the cage on your head until the afternoon, because treatment can take an hour or more per person. They feed you, but there was so little space around the cage I could hardly eat. Poking poached egg and baked beans on toast with your fingers through a small gap into your mouth is very messy.  

Or consider CT-guided lung biopsy. You lie face-down on a CT-scanner while they retreat behind a radiation screen to plot positions. The surgeon then re-enters to take a sample with a tubular needle through your back. I wondered what was the cold liquid in my throat, until I coughed rich red blood out all over the scanner. There was so much of it. You don’t think of blood in your lungs as cold. 

But Top of the Procs (or Ops) has to be chemotherapy. What a foul treatment that is! Just as you begin to feel a bit better, they give you another dose and you cannot believe it possible to feel so sick. Following close at Number 2 is brain surgery. It leaves you so confused you can’t work out how to use the phone or switch on the radio. 

Hardly making it into the charts is lung radiotherapy. Despite dire predictions, there were no adverse effects for me. The most difficult part was the 50-mile round trip to Leeds every day for a month. Very tiring. 

After all that, they said it was incurable. That was two years ago when they referred me to the hospice and issued a bag of controlled narcotics. I wished they would stop coming round and telephoning, a different person every time going over the same questions. “How far can you walk?” “Do you have any problems with bowel movements”? “Can you look after your own personal hygiene?” I was still well. 

The biopsy identified a known tumour mutation, for which there is a targeted drug that blocks its growth. I believe it costs the NHS around £60,000 p.a. (the actual figure is commercially confidential). The tumours became stable, and even shrank. But the side-effects are challenging. The worst is fluid retention. It gives you elephant arms and legs that make it tiring to move around, and your clothes too tight. It collects in and around your lungs, and you become breathless and have difficulty talking. 

Several times in December, I became seriously short of breath and unable to breathe deeply enough to get it back. It took quite an effort not to panic. The usual remedy of taking long deep breaths was impossible. A cold would have finished me off. There was nothing else but to stop the drug. Despite reservations, I stopped completely for ten days and then went on to a half dose until the end of the month. Thankfully it worked. Within a week I was no longer short of breath, tired and grumpy. The dose can probably be reduced again if needed, but there is the danger it allows the tumours back. Some patients develop new mutations. 

Most frustrating of all are the things I am no longer allowed to do: they stop you driving straight away; or cannot do such as walk more than half a mile or so. I also am unable to read fluently because of a blind spot. Thank goodness for text-to-speech. And there are also things it would be silly to try, such as riding my bike, or staying away from the familiar low-risk safety of my home environment. But I can do a bit of gardening, and jobs around the house, and write blog posts, and listen to music, and enjoy a bottle of beer. My contemplative nature means not needing constant activity. As Weaver showed us, you have to make the best of things. Otherwise, you go to bed and don’t get up again.    

Not So Smart

Two things: energy meters and me. 

A succession of energy suppliers has been pestering us for years to have a smart meter. We’ve held out this long because we don’t see the point. It’s for their benefit, not ours. The energy suppliers are paid to fit them, and meters don’t save you any money if you don’t use energy unnecessarily. 

But we don’t think it will be all that long until they become compulsory, and as EDF were offering us a fixed rate tariff that cut £150 off the annual bill provided we had a smart meter, it seemed the right time to do it. We checked their calculations and signed up two months ago, made an appointment for the meter installation, and got the lower rate immediately. 

The installer couldn’t do it. First of all, there is not enough space on the electricity supply base board. Secondly, because the gas meter is in the garage at the other side of a double brick wall four yards from the electricity meter in the house, the signal strength would probably be too weak for the two to communicate. He took some photographs and said that EDF would be in touch about what happens next. 

They weren’t. All we had was emails saying we must have a smart meter to remain on the fixed tariff. So I phoned them. It seems we continue to wait. Apparently, they cannot alter the tariff while the matter remains open. 

I estimate it needs at least £500 of work to resolve the problem with the electricity base board. I hope they don’t say it is our responsibility. And that would not solve the issue with the gas meter anyway, so we would still have to submit manual readings. 

Smart meter roll out in the U.K. is a farce. It was all supposed to be finished five years ago. The mistake was to give the energy suppliers their way to fit them piecemeal, rather than have the national power grid install whole areas at a time. Private industry knows best, of course! We all pay for the inefficiency through increased bills, while the energy suppliers rake in the payments to give to shareholders. 

I am not so smart either. First of all I had another fit and a night in hospital. It was two days after flu and covid jabs, and I also got the fine balance of hydration, nutrition, temperature, and tiredness wrong that day, but whether they had anything to do with it, I don’t know. 

I am also struggling more generally. In addition to the reading difficulties written about previously, the pills I take to poison the tumours also poison me. One side-effect is to deplete blood albumin. It should measure 35-50 g/L. Mine is 21. 

Albumin transports all kinds of things around the body, so the consequences are challenging and many. When you have a serious condition you learn more about human biology than ever they managed to teach you at school. 

Reading with text-to-speech is slow, and I feel very tired much of the time. Posting and commenting take a lot of time and effort. I no longer comment as much as I would like, but I read more than I comment. I enjoy your posts, and continue to do what I can.

This is not to seek sympathy, but just to say how things are. I am more interested in your thoughts about smart meters. 

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.