Emergency Hospitalisation
in October 2020, I had a skin infection and a moderately high temp, and felt very unwell, so the GP sent me to the local Casualty.
The doctor in A&E examined the area and ordered bloodwork. I settled in for the long wait… but suddenly a nurse came in to consent me for surgery! My bloodwork showed I was on the borderline of sepsis, and the surgeon was worried about the extent of the abscess.
I dug in my wallet for my “At risk of Carcinoid Crisis” card: the nurse said “Oh don’t worry…”. When the anaesthetist came to see me, I showed him the card, and he also said “oh don’t worry, we will monitor you”. Usually, I would have argued but I really wasn’t myself… I was finding it difficult to think clearly. The anxiety was pretty bad, but as I was going into theatres an anaesthetist who knew me (from the pain service) who told me “Don’t worry, I know you…” I felt a bit comforted that someone knew me.
Post-operatively, my blood pressure was quite low, and it took several days to turn around. I was having considerable problems with my asthma as well. Both low blood pressure and bronchospasm are complications common in Carcinoid Crisis. I struggled to get a “low amine” diet. I had a few carcinoid episodes whilst impatient, and I could tell the nurses were completely out of their depth.
When later that week I spoke to my Neuroendocrine Cancer Consultant during a planned phone appointment, he quite emphatically told me that the next time I needed intervention that might include surgery I was to go to his hospital, so “people who know what Neuroendocrine Cancer is” would be caring for me. He voiced concern that I could have been harmed because the correct interventions had not been in place.
I’m finally over the problem that brought me to casualty, but the experience highlighted how important it was to advocate that I need special “peri-operative” care (care before, during, and after surgery). I’ve now spoken to my GP and our Ambulance Service so my records include the importance of bringing me to the most appropriate facility. I know healthcare professionals did not intentionally put me at risk: it just shows how experts are essential to ensure appropriate care for people with neuroendocrine cancer even when the problem is seemingly unrelated to cancer. The truth is that the nature of neuroendocrine cancer is that *everything* is related.