Thread by @WhatNowDoc

Folks, I'd like to listen up for a moment, if you would.
I'd especially like you to listen up if you're male and doubly so if you've had treatment for cancer at any time in your life. For everyone else who uses the NHS, I'd like you to listen to, so that's everyone, then. 1/

I want to tell you stuff no one tells you. I want to alert you to ask questions, to find answers and to take no crap from the medical profession, especially the NHS, lying down, if you'll pardon the expression.

As some of you know, I contracted lung cancer back in 2012 2/

If you're interested, lengthy dialogue is available at whatnowdoc.com. It's because of these experiences that I adopted this monika. I had half a lung removed and all was well. A year later, thanks to some intuition on my part and my own research 3/

We detected a lung cancer metastasis in my brain. Some call it a brain tumour but it wasn't, it was lung cancer in my brain. The incidence of a brain metastasis in Non-small cell lung cancer (NSCLC) is up to 36% depending on age. No one but no one tells you this. 4/

No one but no one checks, just in case, not even my lovely and excellent consultant, Conrad. I lied in order to get an MRi of my brain, just to check. Annoyingly, as most of my friends will attest, I was right. The discovery was worse than the diagnosis of lung cancer. 5/

The thought of having my skull cut off and a surgeon delving, literally, to the bottom of my grey matter, was more than I could cope with, especailly when I saw the eyes, of the two separate consultants I retained, light up at the prospect. They love nothing more. 6/

One of them recommended Gamma Knife treatment (read the blog) instead and I grabbed it with both hands. It was completely successful. It involves a great deal of highly targeted radiation. To put it in context, that amount of radiation, delivered generally to my body, 7/

Would kill me in days. What no one mentioned, and I'm blaming no one for this, is what it might lead to down the line. Emphasis, *might. Would I have said, "Okay, let me die of a brain tumour"? No, I would have done it anyway. This was back in 2012/13. 8/

These two procedures, with no chemotherapy at all, both entirely painless, bought me eight years of glorious life. In that time, I have lived and loved, I sold my business and made a lot of people a lot of money, as well as taking care of my family's future. 9/

II got to attend my elder son's wedding in Italy to his lovely Italian wife Who I'm proud to call my daughter and I was gifted two glorious grand-daughters who are the apple of my eye. I could not be more grateful for anything, ever nor regret any decision I made, I alone. 10/

It's March 2018 and I'm in a lovely restaurant outside New York with my wife, her 99 year old mum, Medical Director Brother and Sister in law. For no reason at all, my nose starts to gush blood and takes quite a while to stem. Everyone is concerned. 11/

My Brother in Law asks if I have any other symptoms and I explain that I keep having bruises appear for no obvious reason. He insists that I spend the next day in his hospital before I go home and he'll arrange bloods, checks and stuff. I felt obligated so I did. Nothing. 12/

They insisted that when I get home I must have a full stress ECG. I book myself a top end Cardiologist, ecg, angiogram, MRI, bloods, the works. Zilch. I google endlessly, nothing. Your nose bleeds 'cause you pick it, you banged into things and just don't remember. 🤪 13/

The bruises continued to appear, on the insides of my arms and thighs, mainly. Sometimes my nose would bleed. I'd stopped taking aspirin with that first nosebleed. Through the first half of this year, same but bruising worse. I took photos. I discussed it with the GP. 14/

I sat down with Google for several hours. Picking your nose too much, banging into things but your dementia means you forget......yeah, right. Then this little nugget: In rare cases this could be an indication of Leukaemia or Lymphoma....OK, that is serious... 15/

I go online and track down the top Haematologist/Oncologists in either London or locally. It's Coronaphobia world. My top three, "Oh, the doctor is only taking "digital consultations", whatever the fuck they are.". I wanted someone with eyes and hands on. I looked locally 16/

Not my first choice but he has PhD and is five minutes away. It takes a week. Nice guy, reasonably knowledgeable. I need specialised blood tests, he says, I need to get them to the lab within two hours. The hospital has been seconded to the NHS and... 17/

"I'm not sure what's still working."
I'll figure it out and get someone to call you.
They do, I go, blood tests. For brevity I'll cut out the comedic bit, ask me later.
I have a second appointment this last Weds evening, a second confirmatory blood test with instant result 18/

There's no doubt in his diagnosis, though he wants a bone marrow biopsy to confirm/assess the progression. It's CMML, Chronic myelomonocytic leukaemia. Apparently, it's not as bad as Acute myelomonocytic leukaemia but that word Leukaemia, says it all.
There's no cure. 19/

Aside from symptoms, it's a genetic platelet deformity, caused by Chemo, radiation or inheritance. In my case, radiation. It's diagnosed by the presence of excess platelets, moncytes, eosinophil, oh and reticulocytes. Median life expectancy, 20 months from.....? 20/

There are chemo drugs that can keep the lid on it for a while. Regular blood transfusions to maintain haemoglobin, drugs to combat the build up of iron in the heart and organs from the transfusions. There's a "cure" if you're young enough and fit enough that on median... 21/

Buys you an extra 14 months, assuming you're not one of the 20% killed during the procedure or the larger cohort that die in the aftermath of the entire destruction of every living component of your immune system so as to avert rejection of the replacement marrow. 22/

In short, none too rosy.
I went straight from the appointment to dinner with a very dear friend. I couldn't tell him but I couldn't not tell him. These are no win situations that, twice in my life, I had to face. There is never a good time. 23/

That dinner kept me sane that night, kept me from wallowing. In the morning, early, I retrieved a recently acquired copy of my medical records (long story) recalling sight of some blood tests in there. Tests dating back to Nov 2017, it transpires, 5 mths before that nosebleed.

When your tests come back from the lab, they show the normal range, where your level sits in that range and flags up any abnormalities for the benefit of the doctor or you. These tests were taken as part of my annual "drug review", required to continue repeat prescriptions. Cont

These reviews consist of taking your weight and chastising you for it. Enquiring into your alcohol intake and chastising you for it. Checking how much/little exercise you take and chastising you for it. And they take blood.
They do not, however, send you the results. 25/

When the lab wants the physician to note something and follow it up, as I mentioned, they flag it. On these records they use the term "Observation". Back in November 2017 they used that term against my Monocyte count, Eosinophil and Platelet count. No one reacted. 26/

They did the same in Dec 2017, March 2019, June 2019 and Nov 2019, don't ask me about the chronology, I'm just quoting from the documents. The counts are increasing throughout this period, having started above range, before my nosebleed. Not a murmour, not a word. 27/

Earlier this week, I received a text from the GP surgery asking me to email them to make a "non-urgent" appointment for my next drug review. My reply did not contain a single profanity. It did ask a question: "Is there any point"? It did say thanks, for alerting me... 28/

Three years ago to the blood cancer condition that has a median survival rate of 20 months.

People wonder why I utterly despise the NHS. This is why.
It's inept at absolutely everything, except killing people, where it excels. In the US, which people love to deride, 29/

This would be a law suit running to tens of millions. It doesn't happen very often. I wonder why? 🤔
Don't get me wrong, even if they'd done their job, I'd still be dying but I wouldn't now have to run like the clappers to tie up a million loose ends in preparation. End/