A blog by Ronny Allan

Neuroendocrine Cancer: 48 hours before diagnosis

Neuroendocrine Cancer: 48 hours before diagnosis

A week before my formal diagnosis, I had a liver biopsy (19th July 2010), and I repeat what I said in this post, for me it wasn’t exactly a walk in the park. I had a mild anesthetic, 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, (from what I remember).  Most patients report no issues with their liver biopsy.  I was sent home on 20th July with some painkillers, but that pain was gone within 24 hours.

Reading my hospital notes, I think this is the actual picture of the tumour they took the biopsy from based on the biopsy location and me checking slice by slice on a copy of my initial diagnostic CT scan:

24th July 2010 (Saturday)

I was OK for a few days, I even went to work and attended a party on 23rd July and got the BBQ out that morning.  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 a liver biopsy and after I found out liver pain can be referred to the right shoulder. I got an outpatient appointment at 11.30pm in a room adjacent to A&E (ER).  The duty GP admitted me to A&E straight away when they looked at my recent biopsy history. I was not yet formally diagnosed with Neuroendocrine Cancer, but I was due to see an Oncologist (I guess a 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 11.30 pm on 24th July 2010 but I didn’t actually get admitted to A&E (ER) until just after 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 out 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 as applicable, or discharge if the matter settles. I slept a lot, mostly because I’d been awake all night. They put me on IV antibiotics (Ceftriaxone) in case there was an infection.

At this point, I had little experience in 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 that 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 hospitals, 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. They did ask me what I wanted!  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 lunchtime!

When my lovely looking meal arrived, I still hadn’t been given any instructions for timings for the scan.  However, after only one bite of 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 were involved.  Later that day I had to have two teas, but I don’t mean cups of tea (although that was also provided).  In parts of the UK, the term “tea” is often used as signifying a late afternoon or early evening meal.  More common on a Sunday.

After they had a look at the CT scan output, the IV antibiotics (Ceftriaxone) was stopped (they could see it wasn’t an infection).  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 around a dozen young students behind him (it’s a university hospital).  He visited to make sure I was fit for discharge.  He gave me a letter to hand to his friend the Oncologist who I was seeing 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 what appeared to be retroperitoneal fibrosis). It also confirmed there was some fluid around the biopsy site.

I found out later that 25th July 2010 was one of the hottest days of the year and 26th July was pretty hot too – so hot I had to wear a 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!).

I’m still here!

8-23 July 2010

I also wrote about the period between the first diagnostic CT scan on 8th July 2022 leading up to the biopsy on 19th July 2022 and then recovery from that.  You can read that by clicking here or on the heading or picture below.

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Ronny

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By Ronny Allan

Ronny Allan is a 3 x award-winning accredited patient leader advocating internationally for Neuroendocrine Cancer and all other cancer patients generally. Check out his Social Media accounts including Facebook, BlueSky, WhatsApp, Instagram and and X.

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