Neuroendocrine Cancer: 48 hours before diagnosis

I took this photo on the evening of 24th July 2021 in the New Forest

I had a liver biopsy on 19th July 2010, and I can tell you now, it wasn’t exactly a walk in the park. I had a mild anaesthetic, I felt extremely uncomfortable throughout, and I was in pain. In fact, they did call in another nurse to help and her only job was to hold my hand in reassurance. I was not yet diagnosed.  Most patients report no issues with their liver biopsy.  

24th July 2010 (Saturday)

I was OK for a few days but on the afternoon of 24th July, I started to feel pain in my right shoulder. I normally put up with pain (via regular over the counter stuff) but this got worse throughout the day until it was almost unbearable. Although I was told to take it easy, I suspect I did my usual ‘I’m invincible’ thing and did not rest properly.  Paracetamols and ibuprofen had zero effect on this pain, so I sought phone help on the basis I recently had the liver biopsy and I found out liver pain can be referred to the right shoulder. I got an outpatient appointment at A&E (ER) and the GP admitted me straight away when they looked at the recent biopsy history. I was not yet formally diagnosed with Neuroendocrine Cancer, but I was due to see an Oncologist (pretty big hint) on 26th July at the very same hospital in which I was now an emergency ‘patient’.

25th July 2010 (Sunday)

I arrived at the hospital around 11.30pm on 24th July 2010. I didn’t actually get admitted to A&E (ER) until midnight and while I was kept comfortable by the nurses, including checking SATS, etc, I didn’t get to see a doctor until around 4am. I finally got painkillers once he had assessed my case and was sure what was safe for me. Can’t remember what I got but it helped. I also remember filling in huge amounts of forms!

After seeing the doctor, they moved me from the A&E section into an adjacent ward then called AAU (acute admissions unit) – this was like a step between A&E and a specialist ward if applicable, or discharge if the matter settles. I slept a lot. They put me on IV antibiotics (Ceftriaxone) in case there was an infection (this was stopped after a CT scan). 

At this point, I had little experience of hospitals. I have scant memories of being in a hospital when I was a small child, but I have no idea what for.  I guess in the 1950s, kids were getting stuff which has now been effectively written off by vaccines.  When I was a “boy soldier” in 1972 (age 16), I did spend a night in a medical centre after being knocked out in boxing training (…… you should have seen the other guy!). I spent 3 hours in a German hospital in 1997 (age 42) after falling off a military vehicle in the middle of the night, ending up with bad hip pain (…… I can assure you no alcohol was involved). In 2002 (age 47) I had a minor operation to repair ‘tennis elbow’ – I don’t even play tennis 😏

Now in 2010 aged 54, I’m in a ward full of sick people, most looking sicker than I looked or felt. The food was excellent in that hospital, which is curiously one of my memories of the visit. Other memories include machines making constant bleeping noises, particularly at night, stopped only by a nurse pressing some button or changing a med. Other noises included people shouting out in their sleep or shouting for nurses and doctors (and their mothers), some people appeared to be shouting in pain. I’d forgotten that people die in hospital, they can be scary places. 

After breakfast, I was told the doctors wanted a CT scan and was waiting for this to happen. Normal ward activity went ahead, and I ordered the dinner of Roast Beef plus ‘custard and jam roly-poly’ for dessert.  UK peeps will know about this dessert and if you’ve never had it, you’ve not lived a proper life 😏  p.s. “Dinner” on a Sunday in UK is actually at lunch time!

No timing was known for the scan and my meal arrived.  However, after only one bite of the delicious roast beef, a nurse ran in and shouted STOP, the night shift had forgotten to put ‘nil by mouth’ sign above my bed. I was whisked away to the scanner – I guess the radiologists made allowances for that small bit of food (which had probably only made it as far as my stomach). I did ask them to put my meal in the oven, but I never did see that meal again. 😭 I suspect health and safety was involved. I had to have two teas, but I don’t mean cups of tea (although that was also provided).  In parts of UK, the term “tea” is often used as signifying the main meal of the evening. 

 

The rest of the day was just relaxing. As I was to spend another night in the ward before being discharged, I decided to get some sleep that afternoon knowing the night period would be interrupted by the ‘bleep bleeps’ and the shouts of those worse off than me. I also needed some sleep ready to meet an Oncologist in 24 hours’ time, he was going to give me something called a diagnosis ……..

26th July 2010

On Monday morning (26th July), a Gastroenterologist (a Scotsman!) was touring the ward along with what seemed a thousand young people behind him.  He visited me to make sure I was fit for discharge.  He gave me a letter to hand to his friend the Oncologist who I was seeing in around 7 hours from discharge time. I got a copy of that letter confirming the scan on 25th July compared nicely with the original CT scan results from 8th July (small bowel mesenteric mass, multiple liver mets and retroperitoneal fibrosis). It also confirmed there was some fluid around the biopsy site (most likely blood).  I found out later that 25th July 2010 was the hottest day ever in UK (not checked to see if it has been beaten) and 26th July was pretty hot too – so hot I had to wear T-shirt and shorts to meet my Oncologist for the first time – that’s another story in another blog!

Thanks for listening.

The moral of the story is – don’t be ‘cavalier’ with a cancer diagnosis.  Take it seriously until you know what’s going on.  But later, keep your sense of perspective (…. and humour!). 
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Thanks for reading.

Ronny


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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

 

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