Once more unto the breach dear friends, once more

"Once more unto the breach dear friends, once more,

Or block the breach up with our English dead"

 

(from Henry V by William Shakespeare, spoken by King Henry)

Once more unto the breach, dear friends, once more
AI Generated Image by Harveywetdog

The Lanyard Class

I’ve not written about my CLL experiences for some time, mostly because I’ve been in wait and watch mode since my last update in late 2024. Since then a lot has happened, internationally, nationally and personally, which I can summarise with Trump now runs the USA, Starmer is trying to ruin the UK and personally we’ve upped sticks and are now settled on the Devon Cornwall border. 

Like all interactions with the lanyard class, the move was very stressful, which I’ve hinted at in a couple of other blogs, the end result of which was I didn’t worry too much when Wes Streeting’s increasingly incompetent NHS machine started missing consultations out of GRH as I felt I had more pressing and immediate issues to deal with.

I think my last blood test had been in February 2025 but events conspired against a follow up consultation until August 2025 by which time we were in Devon. I was very lucky with my consultant in August, as it was the guy who I’d first seen back in 2021 and who had set me on and seen me through my Obinutuzumab, Venetoclax, Ciclosporin and Exjade journey. I had it my mind that he had had experience of the Devon/Cornwall area and when he suggested it was a choice between Exeter and Plymouth and I chose Plymouth. We said our goodbyes and he forwarded my details on to Plymouth and I joined a not unreasonable eight week wait list for a consultation.

I'd hate to be ill......

I have previously said that I would hate to be ill and have to deal with the NHS. There is a level of bureaucratic nonsense (yes, another branch of the lanyard class) that defies logic or common sense and can challenge the finest of fellows. The move to Devon has not changed my opinion, simply changed the challenges.

In some of my early CLL blogs I talk about the obvious symptoms that I missed back in 2021 (come on, lets be honest, ignored) which comprised of weight loss, night sweats, breathlessness and swollen glands. Through the summer of 2025 I began to notice the sweats coming back and a bit of breathlessness. But the summer of 2025 was extremely hot so perhaps night sweats were to be expected. I'm getting on a bit now so shortness of breath is to be expected. But I didn't have any lumps that I could detect so I was in two minds as to whether the disease was coming back or not.

Nevertheless I knew I had to be perfectly honest with my consultant at Plymouth and that ultimately my HB level would tell the story.

As clear as mud?
©Harveywetdog

One NHS?

I'd got into habit in Gloucestershire 0f having my my blood taken at my GP's from where it was shipped into the GRH for testing, the results of which were shared with my consultant. When I'd had my hernia treated privately, they'd even used the same service; so why wouldn't it work like this in Devon? The GP surgery is 10 minutes walk away, the hospital is a 90 minutes drive so it was a no brainer.

However, although we are told we have “one NHS”, while the GP surgery sent my blood samples to Barnstaple in the North of Devon, there didn't appear to be any way that the samples (or even the results) were going to get from Barnstaple to Plymouth in the South.

This meant that the doctor didn’t have any blood test results for the consultation, which kind of defeated the object. While the NHS had gone to great lengths with repeated messages pointing out the cost of me missing the appointment, they didn't appear to have the nous to take the trouble to ask me (or my GP) where the blood test results were. A vain hope was that they might pop up on my NHS App but I'm afraid the computer said no.

As an aside I'd say the NHS App is in a really bad state currently, as different health professionals outsource their IT management to a plethora of IT providers with the end result being systems don't talk to other systems, information goes unshared and our data is further compromised as it is spread across a range of vulnerable platforms. 

The only answer was for me to join the queue for a blood test at the hospital to ensure that the results would be logged on "their system".

Where to go from here  

Although they didn't have any blood test results the doctor was able to confirm by examination that the lumps were beginning to form in my lymph nodes again. They expressed disappointment that this was happening, as they appeared to have great faith in the treatment I had experienced, whereas to be honest I had always expected the symptoms to come back at some point. Personally, I couldn't recall anyone checking at Gloucester that the lumps had gone completely, so at present I don't know if these lumps are a residue from my previous treatment or if they have been gradually developing since then. 

Luckily one of the support workers was able to track the results down from Barnstaple and these, together with the results on the day at Derriford, demonstrated a healthy and stable HB level and enabled a plan of action to be set and another consultation at University Hospitals Plymouth pencilled in for early December.

So not good news, but not unexpected and as always it could have been a lot worse.

I will keep you posted  - in the mean time it is important to enjoy Devon/Cornwall, keep a positive mindset and avoid being a victim.

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Harveywetdog/Author - David Robinson CEng FIET 

David spent approaching 50 years in Her Majesty's Electricity Supply Industry before retiring

He was part of the highly successful design team on the Sizewell B Nuclear Power Station Project before spending 25 years producing safety cases to keep our aging AGR fleet generating for the good of the nation

He is responsible for the Harveywetdog YouTube Channel which he maintains as an outlet for his creative talents

David has experienced blood cancer treatment but refuses to be a victim

All views are of course his own but might be influenced by the medication he's had to take