Daryl Haines RSS

The End

Fri, 04 Jul 2025 20:48:30 +0100

The end is finally here.

The trial drug programme hasn’t worked for me. and options have now run out.

I got the final confirmation on Tuesday. Here’s what happened:

On Sunday, 22nd June, my duaghter Lauren had booked us in to an hotel near her flat in Ealing, London, for two nights to celebrate my 50th. We drove down Sunday night and had a lovely evening at a local Caribbean restaurant.,

On Monday morning we got the tube to Sloane Square in Chelsea. That plan was to spend some time walking around posh and swanky London - Chelsea, Belgravia and Mayfair, and play it by ear after that.

Most of my favourite visits to London have involved just walking - there’s always something new to experience.

This time, however, I was under no illusion that my fitness would be a big inhibitor. I would need to take it slow and easy. In fact, we got to about 4pm before I couldn’t do any more and had to call it a day.

I was in a lot of pain so we drove home the next day on the 24th June.

My next clinic appointment was scheduled for Mon 1st July, but I didn’t make it that far.

I usually ache after exercise but I quickly realised this wasn’t business as usual.

Since first being diagnosed with Leukaemia, I’ve been able to tell the difference between standard aches and pains, and bone pain cause by inflammation in the bone marrow driven by leukaemia. For this reason, I suspected I was in trouble and the hospital advised us to go in straight away - a day earlier than planned. The tests and bone marrow blast detections confirmed what we suspected - the white cell count had exploded in two weeks from 4.3 to 110. I was admitted to a ward straight away in an attempt to get my pain under control.

i quickly got put back under the charge of palliative care to sort out an enhanced pain management plan. My treating haematologist then confirmed everything we had previously discussed. The only option I had left was donor lymphocytes, yet, for that to be successful my white cell count would need to come back under control. They stated, and I agreed, that everything worth trying had already been attempted and any further attempts would just equate to more torture. My body is no longer in a good enough state to take further damage.

Since being admitted this week the focus had been getting on top of the pain. It has been tricky, to say the least. I think I’m now on a plan that works and I’ve been discharged to spend my final days at home.

Final Days

My first question, of course, was how long have I got? At first, they said a few weeks. My main treating consultant has since revised this down. It’s more likely to be days rather than weeks. The progression has simply been too fast.

They gave me a choice of spending my final period in hospital, in a hospice, or at home under the care of my family. It was a no-brainer.

I came home last night and the District Nurse has been around all morning sorting out final arrangements for support and pain management.

I get a small benefit package which allows for a hospital bed and some aids at home to make things easier. We live in a 3-storey town-house and our main bedroom is on the top-floor. I’ll be instead spending my final few days on the ground floor, which will be much easier to manage. I tried spending a night upstairs last week but it’s just not achievable. I struggled to make it up and I now need a proper hard, supportive bed.

Support of Angel

As always, I feel so grateful for the support of my beautiful wife - Rachelle. She has been a rock from the very beginning. I really don’t now how I would have coped without her. She makes everything easier. The side effects means I’m always confused or struggling in some way. She just keeps on top of everything. I’ve also been lucky enough that Lauren has been able to come home. She is now between contracts so it works out perfectly for her to be able to help Rach out. I’m also lucky enough to have my parents and other family and friends around to help. Every day it reaffirms that we took the right decision to return from Australia.

We’ve been planning for this for quite a while. Everything should now be pretty much in place. We have the Will, and both financial and health lasting powers of attorney. I’ve also put together a comprehensive document explaining everything so this should make it much easier for Rach in the coming days.

The only real problem, I would say, is that I’ve now fully accepted everything, whereas it’s been a bit harder for my wife. I’ve been telling her for ages she needs to consider her next steps, yet she’s found it difficult to talk about anything other than my making the most of my final few days. That’s no longer an option. She now needs all the help she can get.

What does Death Feel Like?

I had a frank discussion with palliative care about what my final days would look like. Now that there’s no hope of any final recovery it really is just about keeping the pain under control. It’s about getting that fine balance right - The more pain relief I have, the more tired I become, which in turn reduces the standard of the quality time I can spend with my family and friends.

Just writing this final blog post is proving to be difficult. i haven’t slept much in the last few days - it’s showing.

At least I do have some final say over these last few days. I know a lot of people don’t get that option.

Have I seen the Light?

It’s a common question. I’m an atheist, so it seems to be common amongst believers that we we will suddenly go through some last-minute conversion.. On this question, I take the same view as the late, great, Christopher Hitchens.

He rejected the idea that his illness would lead him to a deathbed conversion. In fact, he was wary that some might claim he changed his mind near the end, so he clarified:

“If I convert it’s because it’s better that a believer dies than that an atheist does… I hereby state that if, on the verge of death, I mutter anything religious, it must be presumed that the cancer or the chemo has got to my brain.”

Final Thoughts

I’ve done a few posts now in the last 2 years covering the progression of my disease. I honestly can’t be arsed going over the same ground again.

I’m grateful, for a lot, and there’s really little that I would change. The fear of missing out doesn’t really make much logic. I would love to see how my one and only daughter turns out. I’m so proud of everything that she has achieved so far and i can only imagine good things to come. I hope she uses this to make the most out of her life. Her mum will need some support for a while but the best thing she can do for me is to proceed with her life as planned. Her first job as a speech therapist has been a revelation. She seems to be born to the job, and she has loved her time in London.

Rach knows how I feel about her I don’t want her to do a Queen Victoria and spend the rest of her time in mourning. I hope she can find some continued happiness and start again.

It’s terrible to see my parents going through this. No parent wants to see their son or daughter leave before them. I’ve done my best to try and warn them of the reality of the situation but knowing and wanting to know are two separate things,

I hope my brother can find some lasting peace. He has had his own struggles over the years and I wish I could have done more to help out.

As for everyone else, I was hoping the return to the UK would have given me more time for visits and some quality pub time. It hasn’t quite worked out that way. I mentioned this previously when I talked about bucket lists. It’s myth from the movies. When you get to a certain state of health, priorities change from enjoying a Jack Daniels or two, to enjoying a nice cup of tea with an episode of Vera!

At least I did manage to finish Vera. I haven’t got around to finishing every Oscar winning movie, or getting anywhere near my book reading list. There’s a million of things that I haven’t finished. That’s life. I did get to see Liverpool FC win another league title so that’s something - potentially leaving before I need to even think about the next season.

As strange as this sounds, there’s also been something thacartic about ticking things off - all those tasks that I know are no longer relevant. All those newsletter subscriptions and bog posts that I no longer need to follow.

Is AI going to swallow the world? Will Ukraine get the better of Russia? Will China invade Taiwan? Will the world get to grips with climate change?

After a quarter of a decade of black swan events, what’s the next nightmare around the corner for humanity?

Maybe that’s the answer - and Robert Byrne was right.

Don’t sweat the big things - focus on the things you can control.

The purpose of life is a life full of purpose.

Mission Impossible Films Ranked

Tue, 17 Jun 2025 12:02:09 +0100

My go at an AI generated poster that encapsulates all the films.

I went with my wife to see Mission Impossible Final Reckoning last week. Now that the series is supposedly done (we’ll see), here’s my ranking of the films, worst to best.

Mission: Impossible II (2000) ★ ★ ★

It’s watchable but what a disappointment after the first one. The main problem is the choice of Director. John Woo brought his signature style and tropes - Gun-Fu, slow-motion, white doves, etc., which unfortunately made it style over substance. Everything that made the first one great was put aside and the result was just another generic action film. It’s only Tom Cruise that elevated this from a 5 to a 6/10 for me. Mind you, I did not like the hair!

Mission: Impossible - Ghost Protocol (2011) ★ ★ ★ ½

Simon Pegg’s character - Benji - gets promoted to a full field agent. His comedy adds a little extra to the franchise.

The first 90 mins of the movie skips along. There’s the decent pre-title sequence escaping from a Russian prison to the backing track of Frank Sinatra. There’s great use of gadgets for the Kremlin Heist, then a classic escape from the hospital in Moscow. They then go to Dubai and the whole Burj Khalifa sequence is fantastic.

After that, I find the film lulls a little before the final sequence which goes on a tad too long.

The end sequence in the car assembly plant feel much like the sequence in the tech factory in Skyfall. Both involved fights while dodging machinery. Skyfall was released a year after this, so it was probably just a coincidence.

A lovely ending moment with his wife.

Mission: Impossible - Final Reckoning (2025) ★ ★ ★ ★

First of all, the fact that I’ve placed this sixth on the list yet still given it four stars is, for me, a testament to the overall quality of the series. I’ve only seen this once, so over time the ranking may change.

In summary, the action set-pieces are spectacular. How Tom Cruise is not dead baffles me. Yet, the criticisms are valid - there’s too much exposition, particularly in the first hour, and it’s too long. Christopher McQuarrie and Tom Cruise are known to work on the action set-pieces first, then build the plot around them. In the case of the final film, it shows. The way they linked the previous films in to one continuous plot-line didn’t entirely work for me. Bringing back William Donloe from the first film absolutely did fit. The rabbit’s foot from MI: III, on the other hand - give me a break. The rabbit’s foot from MI:III was a mysterious MacGuffin and it should have been left that way. This film is best enjoyed if you don’t overthink the plot-holes.

Despite these criticisms, it’s a thrilling cinematic experience. I’d rather watch this over some CGI Marvel nonsense anytime.

By the way, the cinema showed a short trailer I hadn’t seen before for an upcoming Liam Neeson film. I won’t spoil it by describing it. You’ll know what I mean when you see it. We nearly fell off our seats laughing. There’s a trailer for the film online but it’s not the same one as they showed in the cinema. The cinema one was hilarious.

Mission: Impossible - Dead Reckoning (2023) ★ ★ ★ ★

When I first watched this at the cinema I had a similar disappointment to MI: II. The previous instalment (Fallout) was such a fantastic film that I fully expected the same. After all, it also has Christopher McQuarrie at the helm.

It never quite reaches the heights of Fallout but I recently watched this again and enjoyed it much more on the second viewing. I think part of the problem was that the main stunt - Tom riding his motorbike off a cliff - was trailed and discussed so heavily leading up to the film’s release that, by the time I watched it, I felt like I’d already seen it. On second viewing I was able to sit back and just go with it. You could still easily cut 30 mins from the running-time, but the film was much better than what I remembered.

Mission: Impossible III (2006) ★ ★ ★ ★

This was the directorial film debut by J.J. Abrams and, thankfully, he brought the series back on track. I know it faces some criticism in terms of the directorial style. The main criticism seems to be that J.J. Abrams brought the same TV aesthetic as if he was shooting another episode of Alias - shaky camera, close-ups, over-the-shoulder camera angles, quick-cut edits, with flat lighting and colour grading - making the film less cinematic. I have to admit I never noticed or was bothered by any of that when I first watched it. I fully went along with the plot and the action. I also enjoyed the love story with Michelle Monaghan’s character. Plus, Phillip Seymour Hoffman was a superb baddie and Tom Cruise does some excellent running!

Mission: Impossible - Rogue Nation (2015) ★ ★ ★ ★

This is the film that introduced The Syndicate - I suppose the MI version of SPECTRE from the James Bond books and films.

Again, this is very much a string of great sequences. It does you no favours if you try to think too hard about the overall plot.

The opening sequence with Tom Cruise hanging off the side of a cargo plane is superb. It really does add something when you know Tom is doing this himself. The nutter.

Rogue Nation also introduces the badass character of Ilsa Faust, played by Rebecca Ferguson.

I’m glad they didn’t dilute the franchise by doing a spin-off movie or TV series, but if they did, a movie based around Ilsa Faust would have been absolutely viable.

I loved the Vienna Opera sequence - very reminiscent of a similar sequence in The Living Daylights. It’s hard not to think of James Bond films when you watch these.

There’s also a really decent underwater impossible mission sequence. Ethan has to infiltrate an underwater vault beneath a power plant to retrieve a digital ledger that purportedly contains the names of all Syndicate operatives. Reminiscent of the NOC list heist from the first film.

There’s a great chase scene through Casablanca, and a fine ending in moody London.

I like how in many of these films London is a character in itself.

Mission: Impossible - Fallout (2018) ★ ★ ★ ★ ½

This took what Christopher McQuarrie and Tom Cruise were building in Rogue Nation and ramped it up to another level. Everything was bigger and more exciting - and yet has a fantastic rhythm and pacing. It’s 147 minutes long, and I often have a problem with long action films, but not in this case.

I remember at the time feeling a little jaded with blockbusters at the cinema - endless reboots, sequels and video game-esque CGI sequences. Despite this also being a sequel, it felt like it saved cinema. I had that felling again in 2022 when I went to see Top Gun: Maverick. More of this, please.

Mission: Impossible (1996) ★ ★ ★ ★ ½

There’s not much in it between Fallout and the original. Both are top-drawer, big-budget, thrilling blockbusters. However, the first one still holds a special place for me. I remember exactly where I first saw this and how I felt coming out of the cinema.

Putting it into context, this was released a year after Pierce Brosnan had rebooted the Bond franchise with Goldeneye. I’m a massive Bond fan but I’ve always been of the opinion that Pierce Brosnan made a great Bond, but was let down by the films.

Goldeneye was good, but Mission: Impossible seemed on another level.

Whereas the later Mission Impossible films lean in to spectacular action, the original has a specific balance and style that sets it apart from all the others. It’s more of a traditional spy thriller rooted in espionage, misdirection and psychological tension.

Then there’s the way it is directed by Brian De Palma. I love film-noir and neo-noir, and he somehow manages to brings this style to an action film - moody lighting, dutch angles, thematic colouring, POV framing - it’s stunning - definitely the best looking of the franchise.

That’s not to say that it skimps on action. Despite Ethan Hunt not firing a single shot throughout the film, it has spectacular action sequences. The Langley heist scene is cinematic poetry - almost shot in silence, yet absolutely gripping. Finally, there’s the end set-piece on the Eurostar accompanied by that fantastic score by Danny Elfman, with a perfectly timed musical cue. I distinctly remember that moment at the cinema - the feeling was just as visceral as that one time I jumped out of an airplane. Except this time I didn’t end up with vertigo.

As an aside, I think that feeling is called ‘frisson’. People might say it’s Autonomous Sensory Meridian Response (ASMR), but I think ASMR is more relaxing. This wasn’t relaxing - it was electrifying.

What Next?

With those films done and dusted, I’ll be interested to see what Tom Cruise does next. IMDB has him listed with 5 upcoming films - an untitled Alejandro G. Iñárritu film in production, and four others in development or pre-production. There’s even talks of another Top Gun sequel. As much as I would love this, I’d like to see him mix it up a little - take a few chances like he did earlier on in his career. He could absolutely carry on as an action hero. Liam Neeson has proven that age isn’t a barrier. However, he showed in earlier films like Magnolia, Jerry Maguire and Born on the Fourth of July that he’s a great actor. He absolutely could move in to different genres.

In 2012, I wrote In Defence of Tom Cruise. My opinion hasn’t changed (although my ranking of his films has).

Health Update - June 2025

Tue, 03 Jun 2025 18:28:30 +0100

TL/DR: not dead yet!

I’ve just had my latest bone marrow biopsy results which show the percent of Leukaemia cells detected in my bone marrow.

A quick recap. In April, after my March biopsy, I was told I was in molecular relapse. The result was 0.5%.

They immediately increased my dosage of Ponatinib to the full dose - 45mg. My doctor explained he expected that Ponatinib may be slowing down the cancer growth but it isn’t stopping it.

Shortly after my last post I got approved for a new drug on clinical trials. This new drug - Asciminib - arrived a couple of weeks ago after this latest bone marrow biopsy was taken. Therefore the latest results reflect the increase in Ponatinib, not the switch to Asciminib.

The latest result shows my Leukaemia is now at 2%.

This obviously isn’t great - a fourfold increase in 8 weeks, but it’s much less than what I was fearing.

In fact, I went back and looked at the results from the December biopsy. That was 0.003%. A rise from 0.003 in December to 0.5 in March represents a 167x increase. If you project that growth forward to today… well, I’d probably be gone.

I’ve been getting blood tests every 2 weeks - each time with a sense of dread regarding the white cell count. An increase in the white cell count is an indication that the cancer is no longer consigned to the bone marrow and has now spilled into the bloodstream. This typically happens when the percentage in the bone marrow is above 5-10%, although this is an average - for some people it’s less, for some it’s more. When this happens, this is considered hematologic relapse - a tipping point marked by rapid disease growth, a fast breakdown in general health and a heightened risk of spread to the organs.

Each subsequent blood test with a normal white cell count has given me relief, and hope, that it isn’t spreading as fast as I feared.

While it’s consigned to the bone marrow, there is still a risk of what’s known as sanctuary site spread - progression to the central nervous system and testes. This is not common, but it’s not rare either. I need to carefully look out for the symptoms. The problem with this, of course, is that I’ve already been experiencing many of the symptoms due to previous treatments and current medication.

Asciminib

Understanding all the terms and different treatments is challenging for us non-medical professionals. At this point, I’ve pretty much gone through the full gamut of treatment options, so my knowledge is rapidly improving.

It started with chemotherapy. This targets and kills rapidly dividing cells, but also kills healthy cells. As I was in Australia, I had the Hyper-CVAD chemotherapy protocol - high intensity chemo that resulted in prolonged hospitalisation. If you read my previous posts you know the effects, it wasn’t nice. The NHS takes a different approach. If I had been in the UK I wouldn’t have gone through all that. Whether the end result would have been different or the same, I’ll never know.

I then had a stem cell transplant after returning to the UK. The stem cell transplant attempted to replace my cancerous bone marrow with healthy donor bone marrow. The goal is to get to 100% chimerism - where all donor cells replace my cells. I only ever got to 99%. The tiny amount of residual Leukaemia in that 1% resulted in relapse.

After relapse, I had CAR-T therapy, which is immunotherapy rather than chemotherapy. This is a type of personalised cell therapy where my T-cells were genetically engineered in a lab to recognise and kill cancer cells.

Between chemo and the stem cell transplant, I was given Dasatinib. Following the stem cell transplant I was on Ponatinib. Now I’m on Asciminib. This is not chemo or immunotherapy. These are all what’s known as tyrosine kinase inhibitors (TKIs).

I have an aggressive form of Leukaemia called Ph+ ALL-B (Philadelphia chromosome-positive acute lymphoblastic leukaemia), which involves an abnormal gene called BCR-ABL1 that causes white blood cells to grow uncontrollably. These three drugs - Dasatinib, Ponatinib, and now Asciminib - all aim to block that gene, but they each work in slightly different ways.

Dasatinib is a 2nd generation TKI that sits in the part of the BCR-ABL protein where ATP (the energy molecule) usually goes. It attempts to block that spot, and by blocking the spot, shut down the growth signal.

Ponatinib is a 3rd generation TKI. It’s designed to still work if the BCR-ABL gene mutates, especially the T315I mutation, which makes many other TKIs stop working. It binds tightly and has been found to work better than Dasatinib for hard-to-treat cases.

Asciminib is the next generation TKI. It works completely different from the others. It’s called a STAMP inhibitor (Specifically Targets the ABL Myristoyl Pocket). Instead of blocking the ATP site, it binds to a hidden “back pocket” on the ABL part of the protein and locks it into an “off” position. This avoids resistance that can develop with the other drugs.

Asciminib has been approved for chronic myeloid leukaemia (CML) patients but it is not yet licensed for ALL patients in the UK. I’ve been approved for clinical trials on compassionate grounds. At this point there’s very little clinical data regarding its efficacy in ALL patients. Ph+ ALL shares the same BCR-ABL1 gene mutation as CML, so in theory Asciminib can work similarly. There’s just not much clinical data to support the theory - I’m one of the guinea pigs.

Limbo

At the moment I feel like I’m living in limbo. Time is measured by gaps between blood tests and bone marrow biopsy results. My next bone marrow biopsy will be 8 weeks after I started Asciminib. Based on my own calculations, If the growth rate stays the same, it’s also about that time that the cancer could start showing in the blood results. Therefore, if my white cell count is still ok around this time then that may be an indication that Asciminib is working - either slowing the growth further, or in the best case, reversing it. I can but hope. I should get the biopsy results early August, at which point the team have a decision to make about whether to go ahead with donor lymphocytes. I talked about this in my previous post.

For now, I’m just trying to deal with the various side-effects which have changed with each treatment, and concentrate on getting stronger for what’s to come.

The last two months haven’t been great. April ended with an unplanned visit to hospital. The constipation got ridiculous, it required extreme measures. It’s fair to say I reached a new milestone - the full dose of prescribed laxatives, 8 sachets of Laxidose, three suppositories and two enemas in a 24 hr period. It did the trick, and since then I haven’t had any problems in that department.

Since then, I’ve been having various other side-effects most days to one degree or another. It’s nothing I haven’t been through before. The main challenge has been in my head.

From the beginning of this nightmare, I’ve been pretty strong mentally, but something changed in May. I just lost motivation and everything became a big struggle. I’ve had plenty of offers of help. There’s no shortage of that available - whether from the hospital or cancer charities. When I was an in-patient I had regular visits from the resident chaplain - whether I wanted it or not.

I know mental support is helpful for a lot of people but it’s not something I’ve personally sought out. I don’t see what difference it makes. I know the root causes of my issues. Any mental problems are a direct result of my physical problems. Talking about it with a stranger isn’t going to change the underlying facts. I also know that bottling it up isn’t helpful. I don’t. There’s not much else going on in my life at the moment so talking about it with those around me hasn’t been a problem. Even this blog is a form of therapy. Except, in May, I guess I did shut down and bottle things up for a while.

I think I’m through that phase now and back on the right side. I’ll probably slap the next person who tells me to “think positive”, but besides that, I am getting back to normal - getting out when I can and appreciating the now, rather than worrying about the future. Receiving the latest biopsy result has helped. It’s the not knowing that’s the hardest.

In 3 weeks I will be 50 years old. There was a time when I didn’t think I’d make it to that milestone. I’ll take that as another win.

Another Relapse - Health Update Apr 2025

Thu, 10 Apr 2025 20:34:57 +0100

I’ve been waiting for the results of my latest bone marrow biopsy to confirm that I’m still in remission. The hospital rang me on Monday asking me to go in on Tuesday. I knew this would mean bad news.

Testing confirms that I’m in molecular relapse. What this means is that although I only have a small amount of leukaemia cells, the percentage has increased from the last test, meaning there is no doubt that it is returning. I’m in trouble.

The stem cell transplant didn’t work. The CAR-T therapy didn’t work. They also put me on a drug called Ponatanib. It looks like this is no longer fully working. The way the consultant doctor explained it, he suspects that the Ponatanib is now acting like a handbrake on a Honda Jazz - it may be slowing it down, but be in no doubt, the car crash is coming.

Next Steps

I’m running out of options. We are now in new territory where they have followed standard protocol but now need to design a specific plan just for me.

The doctor has put in an application for a new next-generation drug that is undergoing clinical trials. It’s not licensed for use in the UK. He is hoping that he can get special approval for me to get it free of charge from the commercial company as part of the clinical trials.

If that doesn’t work, the next option is Donor Lymphocytes. When I had the stem cell transplant, they kept back extra donor blood for this scenario. This would involve them taking the lymphocytes (a type of white blood cell) and giving me an intravenous injection.

These lymphocytes include T cells, which are powerful parts of the immune system. The goal is for these donor T cells to recognise my leukaemia cells as enemies and attack them. This is called the graft-versus-leukemia (GVL) effect.

Here’s the tricky part. When I had the stem cell transplant I was, and still am, given medication to prevent graft versus host disease (GVHD).

Now, the doctor hopes the donor lymphocytes causes mild to moderate GVHD because it’s a sign that GVL is working.

The trick is to hit the sweet spot - to cause enough GVHD, but not too much that GVHD kills me instead of Leukaemia.

I’ll do another post later where I’ll attempt to explain the science, for anyone that’s interested.

How Long Have I Got?

It is extremely difficult to get the doctor to give any specific timelines because there are too many variables.

Based on my own research, the following may or may not be accurate.

I’m currently at 0.5%, or at least I was a month ago when tested. This is molecular relapse. This is the percentage of cancerous Leukaemia cells in my bone marrow. It’s not considered full relapse until it gets to about 10%.

Worst case scenario - Ponatanib has completely stopped working. I can progress to full-blown relapse in as little as 2-4 weeks. From there, without treatment, my type of Leukaemia (ph+ ALL-B) is very aggressive, death can occur within 1-3 months.

The fact that 4 weeks after my bone marrow biopsy it’s not yet showing up in the blood results gives hope that Ponatanib is slowing it down rather than failed completely. The doctor has immediately increased my dosage in the hope to buy us more time. The actual timeline will then depend on the effectiveness of the proposed treatments.

What Can I Expect?

If the new drug is approved, common side effects include:

Gastrointestinal issues: nausea, diarrhoea, and abdominal pain
Fatigue
Headache
Skin reactions: rash, itching, or dry skin
Increased blood pressure
Musculoskeletal pain
Haematological abnormalities: reductions in certain blood cell counts (like platelets or white blood cells), which may increase the risk of infections or bleeding

While less common, more serious side effects like liver enzyme elevations or cardiovascular issues can occur.

Luckily, other than a few gastro issues, I’ve managed to tolerate Ponatanib pretty well, which had the same possible side-effects.

If I do need a donor lymphocytes infusion (DLI), common side effects include:

Fever and chills
Fatigue and weakness
Infections
Cytokine Release Syndrome (CRS) — much less common than in CAR-T therapy, but possible if a strong immune response happens
Autoimmune reactions — where donor cells start attacking specific organs or systems (rare, but documented)
Acute GVHD:
- Skin rash (redness, itching, peeling)
- Gastrointestinal symptoms:
  - Diarrhoea
  - Abdominal cramps
  - Nausea and vomiting
- Liver problems:
  - Elevated liver enzymes
  - Jaundice (yellowing of the skin and eyes)
Chronic GVHD (I’m still at risk of this from last year’s stem cell transplant):
- Skin changes:
  - Thickening, tightening (like scleroderma)
  - Rash or pigment changes
- Dry eyes and mouth (like Sjögren’s syndrome)
- Hair loss
- Joint stiffness or muscle weakness
- Lung problems:
  - Shortness of breath
  - Bronchiolitis obliterans (a serious lung condition)
- Gastrointestinal symptoms:
  - Persistent nausea, vomiting
  - Malabsorption or weight loss
- Liver dysfunction:
  - Chronic hepatitis
- Genital issues
Less Common GVHD side effects:
- Esophageal narrowing or difficulty swallowing
- Nail changes or loss
- Increased risk of infections (due to immunosuppression)
- Fatigue and malaise
- Peripheral neuropathy
- Dry, irritated lungs or airways
- Cataracts (especially after high-dose steroids)
- Mood changes or depression
Bone marrow suppression
- Low white cells (infections)
- Low platelets (bruising/bleeding)
- Low red cells (fatigue, breathlessness).

I’ve already had a lot of this from previous treatment. One silver lining is that I do not need intensive conditioning chemo to wipe out my immune system like I did before the stem cell transplant and CAR-T therapy. I’m not sure I could take any more intensive chemo.

State of Mind

If you haven’t been through anything like this you may wonder how I’m taking it. The truth is, I had a moment, but otherwise I’ve quickly moved to acceptance. It’s entirely out of my hands. This is now the second time I’ve relapsed. I know I’m not winning the battle, but there’s no point moping about it. I have to think about practicalities, like preparing for the worst.

When I was first diagnosed, but after the initial treatment, we made sure I had a will in place.

Strangely enough, a few months before I was diagnosed, I created an ‘If I Die’ document. At the beginning of 2023 I had this realisation that I’ve been fairly lucky in my life. No major tragedies. I had lost grandparents, but they were at a grand old age. I had never considered bereavement planning for myself. Yet, I had this weird feeling that something was coming. I’m not religious or spiritual. I really can’t explain it.

The ‘If I Die’ document is a guide for Rach and Lauren to know exactly what to do so they don’t have to panic about the practical steps. It includes things like getting access to finances, life insurance, etc. It includes things they will need, like account details and where to find passwords (we use a 1Password family vault for most things). It also includes a short section on funeral arrangements. In my case, I don’t care - I’ll be dead - it’s not about me, it’s about them. The only instruction was to not spend much money.

Since that initial diagnosis, a lot has changed and I need to ensure the document is updated as a priority. A change of country and nearly 2 years without income has a big impact on finances!

In terms of pension, I have my Australian superannuation where I’ve already named the beneficiary. I have a small private corporate pension for the few years I worked in the UK. I have a Navy pension for my time in the Navy, and there’s the UK state pension. When we first panicked about finances, I looked about getting access to some of this. There was no chance. You either have to reach preservation age or be confirmed as dying. I do now have the necessary paperwork to be able to get access, at least in the UK, but now I don’t want to. We have adjusted our circumstances and finally, with help from the state, we can get by on very little. I would rather the full lump-sum go to Rach and Lauren.

I also still need to sort out power of attorney. Another priority.

As well as the practicalities, I’m having to accept that it’s no longer about recovery, the focus is treatment again. Any hopes I had of returning to work this year are out of the window.

This means I’ve had to take some decisions. For one, when I moved back to the UK I set up a business to match the one I had in Australia. I was full of hope that the stem cell transplant would work and I could go back to consulting within 3-6 months. I was also working on a business app that I was going to launch under the business.

Obviously, I’ve had no income from this business, only costs. I’m now going to shut it down. There’s no point incurring these ongoing costs in some hope that I’ll start bringing in income soon. I can think about this again in the future if my treatment is successful.

I also have the dilemma of keeping my professional qualifications. I’m now so behind that I need to complete 120 hours continuing professional education (CPE) credits by next March. This is for my Certified Information Systems Security Professional (CISSP), I was able to put my Certified Information Systems Auditor (CISA) in to dormant state (as long as I keep paying the annual fees, at least). If I fail to meet the CPE requirements for my CISSP, it’s back to 2003 - studying and sitting a four-hour exam again. The smart move would be to try and complete as many CPEs now as possible before the effects of the next treatments kick-in. The problem is, it’s hard to get motivated when (1) it may all be in vain, and (2) even if I make it I have no idea when I’ll be able to return to work. At this point, I’m even wondering whether I even want to return to cyber security. It could be the opportunity for a new start. Something different.

That something different could be the iPhone app I’ve been working on. It was just an idea for doing something completely unrelated to cyber security. After a shaky start, I’m beginning to make real progress. Irrespective of how things go, I’m going to keep working on it because, more than anything, it’s a distraction. While I’m concentrating on that I’m not thinking about what’s coming.

Bucket List

You see it in the movies. Someone gets a terminal diagnosis, so spends their final months travelling the world and ticking off items in their bucket list.

The reality is somewhat different. For me at least, I can’t go anywhere. I need to stay close to the hospital, and if treatment fails and it moves to palliative care, I’ll be in no fit state to do anything.

There are a thousand items on my bucket list, but I have no regrets. My life hasn’t been boring. I have a lot to reflect on. That’s why I created My Life in Weeks.

Anyway, less of that. I’m still here and I still have a fighting chance.

📺 Prime Target ★★½ (and the real threat that's never mentioned)

Mon, 31 Mar 2025 15:52:45 +0100

Apple TV+ has had a pretty good hit rate, so when I saw the trailer it sounded appealing - a cross between Good Will Hunting and Jason Bourne. If only.

The main problem with Prime Target is the central premise. You have to turn off your brain for a lot of these conspiracy / spy shows, but in this case it was made worse because I actually know something about the subject at hand.

The central premise is that a genius mathematician at Cambridge University is on the verge of finding a pattern in prime numbers. Prime numbers are foundational to many cryptographic algorithms, so if a pattern was found, it would pose a significant threat to encrypted data. For this reason, the NSA monitors mathematicians around the world, and those on the verge of making the discovery, well… you can guess the rest.

It’s absurd. Put aside the ridiculousness of a US intelligence agency installing cameras in the offices of mathematicians so they can watch them write out algorithms on a white board. Let’s consider the idea that the way to deal with a security vulnerability is to kill the researcher who finds it. It’s nonsense.

Let’s bust a few myths. Companies and marketers like to use terms like ‘military-grade encryption’ or ‘bank-level security’. The fact is, in the case of encryption, there are industry standards. For example, the encryption used to protect the data at rest on your iPhone is no different from the encryption used to protect classified data at rest on a military server.

A common rule in security is that you don’t write your own encryption or use some obscure proprietary encryption. It’s for one simple reason. Obscurity does not equal security. You want the encryption algorithm to be widely reviewed and tested so you have confidence that it is mathematically and technically sound.

For this reason, most of the world relies on the US National Institute for Standards (NIST). They hold open competitions where cryptographers submit papers and proposals for different cryptographic algorithms. It’s an open and transparent process. It’s designed that way so that it’s open to global academic and industry review, and subject to peer review, like any other science. The transparency builds trust, and it helps standardise the use of encryption algorithms so that systems can inter-operate.

Government wants to know about weaknesses in encryption algorithms. The response is not to try and hide the weakness hoping no one else will find it, or kill the researchers. No, the way they deal with it is by deprecating the algorithm and choosing a better one. It happened when flaws were found in the Data Encryption Standard (DES), so they held competitions to select a cipher for a new standard, which became the Advanced Encryption Standard (AES). When you visit a website, the data transmitted between your web browser and the website is encrypted using a different algorithm, which, again, was selected based on merit, and when flaws have been found, NIST updates its standards (FIPS-140) to recommend better ones.

Prime Target could have been more believable (but maybe not so dramatic), if they went with an actual, real threat that is happening right now. The risk to encryption algorithms is not from some genius mathematician - it’s from quantum computing.

As we stand in March 2025, NIST is in the final stages of finalising standards for post-quantum cryptography. If all goes well, governments, vendors and organisations across the world will upgrade cryptographic modules in hardware and software to adopt the new standards, and everything will be fine.

On the other hand, there’s a risk (most likely from China) that a sudden leap will be made in quantum computing and the world will face a Y2K moment.

There’s a misconception that the ‘Y2K bug’ was some kind of damp squib. The media predicted armageddon but in reality nothing happened - therefore it was a lot of fuss and nonsense about nothing.

The truth is that the Y2K bug didn’t cause mass disruption because the entire tech industry spent thousands of hours and billions of dollars fixing the problem. I was one of those lucky people who was on-call over the Millennium New Year’s Eve and had to go in at stupid-o-clock to make sure everything was working ok.

A sudden advance in quantum computing, without a corresponding quick upgrade to quantum cryptography, could be a major threat. Especially when you combine this with the exponential advances being made in artificial intelligence (AI).

If, for example, it is suddenly revealed that a breakthrough has been made in quantum computing and RSA or elliptic curve cryptography (ECC) was no longer viable for SSL/TLS certificates that protect internet communications, billions of certificates would have to be revoked. It would cause mayhem. Or would it?

We’ve been through this before. Vulnerabilities were found in SSL and early versions of TLS. The advice was to upgrade. The advice then turned into a mandatory compliance requirement - at least it did for governments, and for merchants wanting to take online payments (contractual requirements to comply with PCI DSS). There was a transitionary period. No one panicked, and I’ve seen no evidence that there were major or widespread security breaches of organisations that were slow to upgrade.

It just goes to show. The risks are real, but we’re all - especially in the cyber security industry - terrible at quantifying risk. Plus, even when vulnerabilities are found in cryptographic algorithms, there are usually easier ways of breaching security.

Nonetheless, quantum computing is a risk to encryption. The world will need to adopt post-quantum cryptography sooner or later. For those who care about data security it will be sooner, irrespective of the current state of quantum computing. This is for one reason - the ‘harvest now, decrypt later’ threat. If you can capture the data now, it might not be readable now, but it could be later if a vulnerability is found or quantum computing breaks the underlying algorithms.

Quantum cryptography is already being rolled out. In February 2024, Apple announced a post-quantum cryptographic protocol (PQ3) for iMessage. Other vendors have also made upgrades, including IBM, Cloudflare, and Signal.

As an aside, Signal has been in the news recently after stupid Trump MAGA morons tried to convince us that those messages on a Signal chat thread didn’t include classified information. As someone who has worked on an aircraft carrier processing signals about missions and flight operations, I can attest that that kind of detail would have been highly classified, and I would have been subject to court martial and probably sent to military prison if I had disclosed it.

Here in the UK, just in the last days, the National Cyber Security Centre (NCSC) has published a roadmap for agencies and organisations to upgrade vital services by 2028 with a full transition to post-quantum cryptography by 2035.

I’m getting off-track. This post was meant to be a review of Prime Target.

In general, it’s nonsense. Even if you disengage your brain, it’s mildly entertaining, at best.

It stars Leo Woodall, who seems to be in everything at the moment. I’m not quite sure why he’s having the moment that he is. It’s never clearly stated in Prime Target, but his character appears to be written with that old trope that he’s a genius, so he’s ‘on the spectrum’. Maybe Asperger’s Syndrome or something like that. He’s clever, but he doesn’t recognise social cues. We’ve seen it all before. In this case the character is just - bland. I’m not sure whether it’s the writing, or Leo Woodall’s acting. Either way, he’s no Matt Damon.

Mon, 31 Mar 2025 12:42:16 +0100

If a company allows you to sign up for a service online, it should be illegal for them to not also allow you to cancel online. Also, I’ve noticed when you ring up these companies they used to put you through to the ‘Retentions’ team. Now it’s the ‘Value’ team. Different name. Same old bullshit.

My Life in Weeks

Thu, 27 Mar 2025 15:23:49 +0100

I’ve seen a few bloggers do this so I thought it would be an interesting personal project, particularly given the amount of time I have for reflection given my current circumstances.

Introducing - My Life in Weeks.

The project is inspired by Life in Weeks at Wait But Why. I adapted the code that generated the project from Gina Trapani, which itself is a fork of code from Buster Benson.

It’s been an interesting exercise going back and seeing what I can actually find regarding dates for major events in my life. Since 2000, I have a digital record of most things, whether that be emails, calendar events or time-stamped photographs. Prior to 2000, however, it’s a little more tricky.

For instance, I’m really struggling to recall and find dates for places I visited when I was in the Navy in the 90s. I’ve added some events - pieced together from postcards I sent to my parents and a few photos I do have, but I’m missing far more than I’ve added. A deployment in late 1997 is well-photographed. Other than that, I tended to lose my camera on crazy nights out. I remember one time I lost my camera in the sea when stepping drunkenly from a boat on to the jetty.

I’ve also struggled to find any official records of port visits for the Royal Navy ships I was on. I can’t imagine why this would still be classified. It would take a lot more digging I think. A lot of archived newspaper clippings are behind paywalls. I’ll probably need to reach out to former shipmates, or trawl through the various Facebook groups.

My Life in Weeks includes where I lived (I’ve moved house a lot), where I’ve worked and major trips, in cases where I have dates. I’m still missing some holidays from the 90s. I haven’t bothered with weekends away. There were a lot of them - when we were in Australia, at least.

You may wonder how much it costs to create and host this little project. The answer is - nothing. The website is published on Netlify, which offer a free plan for personal use. The code is served from a personal GitHub repository - again free. The web server and code is open-source (i.e. free). Ok, you do need to purchase a domain name, but I already had darylhaines.com. For this project I simply created a sub-domain (CNAME) entry with my DNS provider. Easy peasy. Any time I want to update the entires, I simply make a change to a text file, push it using Git to my code repository. Netlify is set up to monitor the repository and automatically publish any changes. If only everything was this easy.

Wed, 26 Mar 2025 12:27:58 +0100

📺 Landman ★★★★

Sat, 22 Mar 2025 14:40:01 +0100

Great TV. A show about oil mining in West Texas isn’t usually the type of show I’d watch, but I heard good things. They were right. It’s like a cross between Dallas and Breaking Bad.

It’s gloriously un-PC, without being offensively so. More importantly, it’s great writing.

I'’m pleased to hear it has been renewed for a second series.

Landman (2024)

Sat, 22 Mar 2025 12:06:05 +0100

There’s some lovely streets around York Minster

📚 Gary Stevenson, The Trading Game and Wealth Inequality

Tue, 18 Mar 2025 14:37:15 +0100

I recently listened to a podcast episode of The Headliners with Nihal Arthanayaka in which he interviewed Gary Stevenson. I’d never heard of Gary Stevenson before moving to the UK. Gary had a lot to say about wealth inequality, which was interesting, but I was left with a lot of questions. I know this isn’t BBC Radio 4, but I would have thought at least Nihal would ask a few probing questions and challenge him on some of the details. No. It was a really poor interview.

It got me interested though. It led me to read Gary Stevenson’s book - The Trading Game: A Confession. ★★★★★

Whatever you think about Gary’s interview style and social media prophesizing, I found the book fascinating.

Trading Game is not really about wealth inequality. It’s mentioned, more towards the end, but the crux of the book is a personal biography of his journey as a poor kid from East London, to the ivory towers of Canary Wharf as a city trader (via the London School of Economics), and his gradual realisation that we’re all getting screwed by the ultra-rich.

He talks with real conviction about how he made himself millions by betting on a large increase in economic inequality, and that growing poverty would cause interest rates to stay low, despite the predictions from Government, The Bank of England and leading economists who all said, year after year, that normal levels of interest rates would come back.

I think this is the first book I’ve read in a single day. No skim-reading. I read the full book in one day (I got nothing else done that day).

I couldn’t put it down. It’s an incredible insight into that life. Think Wall Street or The Big Short but relocated to London. More than that, when he becomes disillusioned and decides to leave, it’s more like a thriller. It doesn’t read well for Citibank - I got the picture that it’s easier to leave the mafia than this global bank.

I won’t say much more because this is one of those books where you really do get the pleasure of finding things out.

Wealth Inequality

In general, I buy the key argument about wealth inequality and the need to tax wealth, not work, but I have a few issues with his YouTube channel and the interviews I’ve heard so far.

I think he’s successfully getting the message out there that there has been a massive increase in wealth inequality in the last three decades particularly. When he talks about how the 2008 financial crisis and COVID exacerbated the shift of assets from the middle class to the ultra wealthy, I get it.

I’ve been reading a few books on economics lately - trying to get my head around some of the basic economic theory. Gary is inspired by economists such as Thomas Piketty, who popularised the “r > g” argument in his book Capital in the Twenty-First Century.

The “r > g” argument refers to the idea that when the rate of return on capital (r) exceeds the rate of economic growth (g), wealth tends to concentrate over time. In other words, if the income generated by investments (like dividends, rents, interest, and capital gains) grows faster than the overall economy and wages, those who already hold capital (typically the wealthy) will see their wealth grow disproportionately. This dynamic can lead to rising inequality unless offset by policies like progressive taxation, especially on capital and wealth.

Gary’s solution, in general, is to place a 1% tax on unrealised gains from those worth more than £10 million. After that, he’s a bit hazy on the specifics. This is where the main problem lies.

I’m really interested, but I need to hear the counter-arguments and practical solutions. How do you prevent a wealth tax resulting in capital flight, or the risk of less foreign investment? Does he agree with the Laffer Curve? What’s his answer to the French experience of a wealth tax, which ultimately failed? If part of the solution is taxing capital gains at the same rate as income, how do you change capital gains tax without it adversely impacting the middle class?

He’s an economist, so he knows the arguments. He just chooses not to go into details, because, I think, he has this view that it’s more important to start with the general message, and maybe us mere mortals are too thick to understand economic theory. It’s a little patronising.

I’ve watched and listened to him being interviewed on various channels. These interviews are also mainly patronising - not delving into the academic arguments or challenging him in anyway.

This is part of the problem. He has become a darling of the left, so most of the interviews so far have been from left-wing broadcasters such as The Guardian, Novara Media, James O’Brien, etc,. He has been shouting into the echo chamber. If his campaign is going to work, he needs to reach a broader audience. I’d love to see him get interviewed by Andrew Neil on Times Radio. He did get challenged on the Piers Morgan show, but the problem with Piers Morgan is the format. It’s no place for a proper, nuanced debate. Piers is more interested in getting guests into a shouting match, and in this case he countered Gary with the loon that is Dave Rubin .

If he starts aligning himself with the likes of Novara Media - actual supporters of communism, he’s got no chance of winning over the vast majority, including me.

Another issue is his presentation style. If you read the book, he reaches a moment where he takes a ‘fuck-it’ attitude and starts coming in to work in just a hoodie and trackie bottoms. He’s now made that part of his identity. He obviously wants to give the impression that he’s still just this working class kid from the east of London, not the multi-millionaire that he became. I generally think people should wear what they want, but I can understand why he might not get invited on certain shows. He also swears, a lot.

Anyway, even if you’re not interesting in economics, I highly recommend The Trading Game. It’s a page-turner!

🎬 Anora (2024) ★★★

Tue, 18 Mar 2025 10:53:12 +0100

I’m just not jelling with Sean Baker films. The story is enough that it kept me watching to see where it would go, but it’s not enough. The problem is a lack of likeable characters. Are we supposed to empathise with Anora? Even at the end?

Being broken may explain bad choices. It doesn’t excuse them.

Sean Baker gets praised for his realistic portrayal of the lesser-shown sides of humanity. I get it. Yes, it’s gritty and raw. It’s also just a bunch of foul-mouthed characters that I didn’t particularly care about.

Some are describing Anora as a comedy. I struggled to find the humour in a woman being treated like that.

Things have gone seriously wrong if this is what’s considered Oscar-worthy these days.

Also, a Russian that acts like a human being. I’m not buying it.

Anora.

Mon, 17 Mar 2025 11:12:25 +0100

Exchange Arcade in Nottingham.

📺 Doubter to Believers Liverpool FC: Klopp’s Era ★★★½

Mon, 10 Mar 2025 15:01:03 +0100

There were some good moments and behind the scenes footage, but also some strange choices. Harvey Elliot’s dad seemed to have more screen time than Mo Salah. Also, is it just me or did the series show more games that Liverpool lost than won?

Doubter to Believers Liverpool FC: Klopp’s Era

Sun, 09 Mar 2025 18:29:56 +0100

Nottingham Council House

Agentic AI May Be the Answer to Walled Gardens

Fri, 07 Mar 2025 14:12:37 +0100

Searching for a job is frustrating. There are multiple job platforms, which means you may end up with a flood of emails from each with job listings based on your search criteria. Often these will display the same jobs. Also often, those jobs will be repeated in job listing emails day after day until the job is no longer available.

What if there was one platform that pulled in all the job listings from all these platforms? And what if you could use a simple swipe-right or swipe-left action to dismiss the listing or add it as a job of interest? Maybe then, once the job is dismissed, some smart tech could ensure you don’t see that job again in future listings?

That was an idea I pursued for about 5 minutes.

When pulling in data from other sites, the most common techniques are APIs (Application Programming Interfaces) or web scraping.

In the case of APIs, it relies on 1) the job listing site to have an accessible API that can be used by third parties, and 2) it being free, or affordable enough to make it a worthwhile endeavour.

In the case of job listings on LinkedIn, for instance, the API favours job postings, rather than job retrieval or job queries. This is for one simple reason - all the large platforms are slowly becoming walled gardens. They’re making it increasingly difficulty to use the web in the way it was first intended by Tim Berners-Lee. Instead of the open web, we now have a handful of massive tech companies competing for your eyeballs and advertising dollars. If you click on a link in these platforms, it will often open an in-app browser, sometimes with no option to open the link outside of the app in your own browser. These platforms wants to keep you in their walled garden because that’s how they make money. This is fair enough - they’re not a charity - but it clearly benefits them more than the user.

The other way of pulling data is web-scraping. The problem with this is it’s legally dubious, at best. It almost certainly breaks the terms and conditions of the platform, and if you attempt to commercialise that data in any way, you will probably end up with a cease and desist letter from a highly paid lawyer.

Unless, of course, you’re already a massive tech company and have essentially scraped the entire web to use for your AI models.

This is where we may have a future answer - AI, and specifically - agentic AI.

Agentic AI refers to artificial intelligence systems capable of perceiving their environment, making autonomous decisions, and taking actions without human intervention.

The idea is, with a simple text prompt, you can ask AI to perform computer-based tasks on your behalf while you go off and do something more interesting.

OpenAI ChatGPT has demonstrated this with ‘Operator’. Microsoft has introduced agents for Co-Pilot. Claude AI (Anthropic) has ‘computer use’, and Google has unveiled Project Mariner. Smaller players are also producing demos of similar advances every week.

Here’s how these demonstrations typically go:

Imagine you’re researching your next trip. With a simple prompt, you tell AI roughly where and when you want to go, your budget, the kind of things you like to do, etc,. It then autonomously opens a bunch of web browser windows and starts doing the searches for you, and pulls the results into a nicely summarised report with recommendations. You could event prompt it to go ahead and make all the bookings for you. I must have spent months of my life doing travel planning manually, so I can easily understand the appeal of handing this over to AI - an autonomous travel agent.

When you first see it, it’s creepy as hell. The biggest barrier to this taking off is clearly going to be trust. I’m certainly not yet ready to give control of my computer over to AI. I know a lot of early adopters are experimenting with it. I’m being a bit more cautious.

However, it’s coming, and this could solve the job search issue I described earlier.

I foresee a solution where, in the first instance, you hand over control of your email inbox to AI. Again, this is not the future, it’s already happening. You ask AI to summarise new job listings that match your criteria, AI then take those listings and add them to a list in another application, which could be simply in a notes app. You then review the listings and delete any you’re not interested in. The AI takes note of what you’ve deleted and ensures they’re omitted from any future summaries from your email inbox.

This is a fairly simple use case.

The thing about agentic AI is it gets around the web-scraping and AI issue. You can even take out email entirely, and just rely on searching the platforms directly. When prompting the AI, you can give it credentials to log in to LinkedIn as you. The same goes for Indeed, Monster or whatever is your job search platform of choice.

The question is, what will the platforms do to stop this? Is there anything they can do? If the platform owns the agentic AI solution you’re using, they’re unlikely to object. As for the others, it will be interesting to see what happens.

I know that there are many, like me, that are longing for the death of Google. The ‘don’t be evil’ mission statement was ditched a long time ago at the alter of pure greed. The result is that Google Search, as a product, is absolutely trash. I stopped using it a long time ago because of privacy concerns. When I look at it now, I don’t see the best search results at the top. In fact, you have to go ‘below the fold’ to get organic search results (results that aren’t paid for by advertisers). They have ruined their own market-leading product.

Just last week, the co-founder of Google - Sergey Brin, sent out an internal memo saying that AI engineers should work 60-hours per week to hit the productivity ‘sweet spot’. So engineers are expected to work long hours, to create a system that will potentially replace their own job, so that the giant corporation can maintain their huge margins. Capitalism at its finest!

Google was a leader in AI. They purchased the British company Deep Mind who was at the forefront of this stuff. Google Deep Mind is doing great things, yet Alphabet (the parent company), still makes most of its money from Google Search’s targeted advertising. Google still has massive market dominance in search. That currently remains at 90% of the global search market. Only a company with a such a monopoly would actively go out of their way to make their product worse for users.

Things are starting to change. For many of us, Google is no longer the first stop for searching the web. I now use AI. Sooner or later, everyone else will. Google is trying to counter this by integrating AI into Google Search, such as with AI Overviews. It may be too late. Once the masses understand the utility of AI, they will gravitate to AI-first search. That could be Google, but they’re no longer the only player in town.

It has been revealed in anti-trust lawsuits that Google paid Apple as much as $20 billion to be the default search engine on the iPhone. Yet, if you buy an iPhone now, Apple markets ‘Apple Intelligence’. The deal they have done to make up for the limitations in Siri is not with Google, it’s with OpenAI. They have said that they may support other AI providers later, but you have to wonder if Google has missed their opportunity to be the market leader in AI. I really hope so.

Google have already discovered in their experiments with AI Overviews that the summary is often good enough so that users will not click on a link to take them through to the source website. If you’re a company paying for a prominent link in Google, what’s the value in paying any longer if you’re not getting the click-through to your own site? It’s a problem for Google, and it’s a problem for advertisers.

This is where the big AI platforms may also become their own walled gardens. You currently only get live web search on a paid plan in OpenAI’s ChatGPT. Your search includes links to the source articles, but if all you are looking for is information, nine times out of 10 there may be no incentive to click and review the entire source article. This is a big problem for website owners everywhere.

Some websites are already going as far as adding known AI web crawlers to the robots.txt file on their website to block them. Not that it always works. Some of the major AI players have already been accused of ignoring the robots.txt file. The file is a convention for web technology that crawlers are supposed to abide by - it’s not a real preventative measure to actively block or allow web crawlers.

Besides the possibility of destroying humanity, AI is another advancement where it’s in the balance whether it will advance the open web, or further entrench the power of the tech oligarchs.

For anyone reading my post in the walled-garden that is Facebook, please, take a stand. There are other options.

Thu, 06 Mar 2025 18:34:46 +0100

Got the steps in today at Clumber Park, Worksop

Wed, 05 Mar 2025 14:49:59 +0100

Loved our little jaunt around Nottingham. It was much nicer than I remembered. Lots of historic buildings and all the pubs were bustling, which makes a nice change.

Divesting From America

Tue, 04 Mar 2025 17:30:58 +0100

My news blackout didn’t last long. Like many, I was outraged by the shit-show that took place in the White House Oval Office last Friday. The bullying and intimidation of President Zelensky by Trump and Vance was horrific. The last time I was this angry from watching the news was when Russia hit the maternity hospital in Mariupol on the 9th of March 2022 (these two things have made me remember - I once wrote a short post about The Ides of March).

It all got me thinking - what can we do as individuals to push back?

Over the weekend, European leaders made all the right noises in support of Ukraine and even backed this up with some real financial commitment.

I fear it’s not enough. The modest increase in defence budgets pale in comparison to what Russia is spending, especially when you take into account purchasing-power parity. The UK commitment of 5,000 lightweight multi-role missiles (LMM) is better than nothing, but in reality, it will perhaps cover Ukraine for a few weeks' defence against Shahed drone attacks. They will be useless against ballistic missile attacks.

Now, the situation is compounded by Trump suspending military aid to Ukraine.

He has also commenced the first stage of his trade war, supposedly putting America first by shitting on everyone else, including allies and American consumers.

Can this be a moment for Europe to get its act together? Fill the gap in support for Ukraine and build an industrial base that offers an alternative to US hegemony? I’m skeptical.

Back to the question - what can we do as individuals?

One obvious answer is that we can divest from America. We know from the first term that Trump’s primary objective and metric for success is growth in the US stock market and the enrichment of himself and his billionaire backers.

This gave me an idea. What if I were to create a website that informs users about US companies and brands and suggests alternatives? Instead of just pulling information from Wikipedia and other sources, it could use AI-backed search and suggestions.

I would need to ‘eat my own dog food,’ which means spending no money on a tech stack that involves US companies. That means no US-owned domain registrars. No US-owned web hosts. No US AI models, and of course, it would be hypocritical to use Chinese AI models. It should also not rely on any other US technology components that could require payments to scale the website - databases, caches, code repositories, etc.

Then, I may need to market it, but that means no Google, no Facebook, X, Instagram, or Threads. Again, no TikTok because of the Chinese factor.

If I eventually choose to monetise it in some way, it would need to offer customers a way to pay without involving US payment processors. That means no Visa, Mastercard, American Express, Google Pay, Apple Pay, or PayPal.

You see the problem here.

What if, personally, I take a stand? Move away from US services and technology? Shop for groceries and other goods, omitting US-owned brands?

Easier said than done.

Putting aside the lack of viable alternatives for many of these things, there’s also the little issue of cost.

This brought me to the conclusion - ethical consumption is a middle-class privilege. One I can’t currently afford to entertain, at least not in its entirety.

Ethical consumption, just like ethical investing, is complicated.

You could decide to boycott US fast-food chains such as McDonalds. The problem here is that most of these are franchises. You’re not just impacting the US behemoth, you’re also impacting UK owners and employees, who bought the franchise or were employed before the US decided to take this turn.

When purchasing a car, appliance, or buying insurance, you could decide that some of the big German companies may offer viable alternatives. But then you remember that Allianz provided insurance for concentration camps, Mercedes-Benz provided the Nazi elite with bulletproof cars, Siemens employed more than 80,000 slave labourers, and Hugo Boss designed the SS uniforms. These companies acknowledge their history. Some justify that they had no choice - they were only protecting their staff and shareholders. But still…

Boycotts and cancel culture can work, but they can also have repercussions. Nothing is simple. The international boycott of South Africa played a significant role in ending the apartheid system, but it wasn’t the sole factor. It also required leadership changes, shifts in geopolitics, and internal resistance within South Africa.

Where are the U.S. Heroes?

Is history repeating, or have today’s industrialists not learned the lessons of the past? There have been huge advances in Corporate Social Responsibility (CSR) in recent years, mainly as a result of legal action and activist shareholders. So far, I’m struggling to list the American businesses and billionaires that are taking a stand in support of Ukraine. Plenty are moaning about tariffs, which makes sense, but what about Ukraine and the march to authoritarianism? I guess self-interest trumps everything.

I used to think, naively, that whatever happens in America, the US Constitution means that it can’t turn into Nazi Germany. Yet, we now have a situation where the American people have elected a president who doesn’t believe in the Constitution, backed by a US Congress that refuses to hold him accountable, and a US Supreme Court that cherry-picks and interprets the Constitution based on their political biases.

The Weimar Republic failed in Germany because it was a new experiment with democracy. Germany lacked the historical depth of democratic institutions. This, compounded with the Armistice Treaty and the Great Depression, fostered the environment that allowed Adolf Hitler and his National Socialist Party to get democratically elected. Yet to get there, he also needed financing. There would have been no Führer without backing from rich businessmen, such as Alfred Hugenberg.

I recently watched the excellent Apple TV+ series - Vietnam: The War That Changed America. The last episode featured a businessman who did stand up and do something.

In the dying days of the Vietnam War, when American troops had pulled out, and the North Vietnamese Army was marching on Saigon, the American businessman, Ed Daly, who was horrified that America would let down an ally, organised humanitarian evacuation flights to rescue South Vietnamese civilians.

In the same episode, I also learned about Larry Chambers, who, while in command of USS Midway, defied orders and risked a court-martial in order to save the lives of Republic of Vietnam Air Force Major Buang-Ly and his family. Buang-Ly was circling USS Midway in a Cessna light aircraft, but there was nowhere to land on the cramped carrier deck. Larry Chambers gave the order to push overboard millions of dollars’ worth of Huey helicopters to clear room.

The chaotic scenes in the last days of the Vietnam War would be repeated when America fled from the Taliban in Afghanistan 46 years later.

Less than a year before the evacuation of American civilians and “at-risk” Vietnamese from Saigon, Richard Nixon, facing conviction for abuse of power, was forced to resign as President. What would it take for this Congress to stand up to Trump? I dread to think.

History doesn’t repeat, it rhymes. So they say.

Sun, 23 Feb 2025 10:43:22 +0100

Scarborough

Health Update - Feb 2025

Tue, 18 Feb 2025 13:54:38 +0100

In my last update in November, I talked about how I was feeling good, and felt positive about my recovery. I spoke too soon.

Another bone marrow biopsy in December, thankfully, was MRD negative confirming I’m still in remission. That’s the main thing. Otherwise, the last quarter has been setback after setback.

In early December, my blood levels were still up and down. This is normal after CAR-T Therapy. The haematology team decided I needed a boost, so they increased the G-CFS injections to stimulate white blood cell growth, specifically neutrophils. I didn’t react well. I normally get back pain the following day, but the increase left me in constant severe pain. So, it was back on the strong painkillers - and back to the inevitable constipation. They also increased the dosage of daily oral chemotherapy. My body didn’t react well.

The team dropped the injections and chemo back down, but I then had a flare up of pain in my side. I assumed it was kidney stones again. I’ve had kidney stones for years, despite generally following all the dietary recommendations.

The one benefit of being a leukaemia patient is I don’t have to deal with NHS waiting lists. I had a scan straight away and the urologist confirmed what I already knew - small stones in the left kidney and scarring on the right kidney. I had scans every year in Australia and the situation hasn’t changed for about 5 years. Until the stones pass, I have to accept that every now and again, they will move around, causing pain. Medical intervention is too dangerous given my current condition, so I have to hope they don’t grow - or, better still, pass through me without any problems. The medical advice: drink lots of water and follow a low-protein diet (despite protein being good for my muscle recovery).

In mid-December, both Rach and Lauren were sick, so I was isolating in the bedroom. I’ve spent so much time in hospital since initial diagnosis I do everything I can to avoid another stay.

The isolation didn’t work. I picked up the respiratory infection RSV just before Christmas. RSV is doing the rounds, but given I have a compromised immune system, I was worried I would end up in hospital for the Christmas period. Luckily, the RSV never progressed beyond the usual symptoms, and I could stay at home. When you’re immunocompromised, it’s very easy for a simple infection to turn into something like pneumonia and a stay in ICU. The consultants remind me that I’ve been very lucky to avoid ICU so far, given everything I’ve been through.

I just got over RSV in mid-January in time for us to help Lauren move to London.

As soon as I returned, I had a flare up of stomach pain. This subsided on the third day, so I didn’t think much of it. I thought it might just be down to eating out for the first time in a while.

A couple of weeks later, it happened again, and there was no obvious trigger. This time, by the third day, the pain was only getting worse. We rang the CAR-T team, who asked me to go in for tests. Blood tests showed heightened infection markers. I was immediately admitted. Yet again, another hospital stay.

After a couple of days the pain subsided. A CT scan showed an inflamed bowel. I have no idea what caused it, neither do the experts. They then decided it likely wasn’t an infection, so they discharged me.

The thing is, I’m still on a load of medication to deal with the chemo, stem cell transplant and CAR-T therapy side-effects. Diagnosing a specific cause of any of the symptoms is a tricky business.

February 9th marked the 1-year anniversary of my stem cell transplant. This is normally a major milestone - year one for my immune system. Except, of course, it didn’t work. I relapsed. Conditioning chemo for the CAR-T therapy wiped my immune system yet again. Despite this, it’s still a milestone. I vividly remember that conversation with the head of the transplant team. I was given a 1 in 5 chance of dying in the first year if I didn’t have the transplant. With the transplant, serious health complications are still common. Well, it has been a year. Im still here and my organs are relatively intact. I’m still at risk of graft versus host disease but the risk should now be lower. I also still find it amazing that I’ve got a different blood type and blood DNA.

It’s now mid-Feb and I’m finally back on track. I’ve restarted the vaccination program, yet again. I’ve now had the first COVID jab three times. The childhood vaccinations are yet to come.

The setbacks mean my physical fitness is no better than a year ago. I’m working on it. The docs want to increase my chemo again. I’m anticipating more side effects.

I continue to hope for a full recovery and a return to work sooner rather than later. This time, however, I’m more realistic about target dates. I keep being told it’s still early days. When this thing started I hoped for the best case - 6 months and back to work.

It has now been 19 months.

Sun, 16 Feb 2025 23:04:35 +0100

📷 Noosa Heads, Queensland, in a former life.

Fri, 14 Feb 2025 22:30:29 +0100

Netflix have now said the Apple TV integration was an error. So much for that then.

Fri, 14 Feb 2025 14:14:06 +0100

Yes, we did drive 90 mins just to visit the home of pork pies.

Netflix is Finally Integrating Apple TV Features

Fri, 14 Feb 2025 13:54:20 +0100

It looks like Netflix is finally going to integrate properly with the Apple TV!

They must have realised that being a market leader is not enough these days with so much streaming competition. I for one often forget about Netflix because I default to my Continue Watching queue on Apple TV Up.

It looks like it’s US-only at the moment so hopefully the rest of us will get this eventually.

Update: It was a mistake