Carcinoid Syndrome Investigations

So as usual life goes on, and as my half full glass is starting to waver I feel my flushing increase. As I struggle in the Wetroom with a shower, turning off the water I sit on the stool provided by my occupational therapist. I look down at my mottled feet as I struggle to get my breath. I used to get just a basic carcinoid flush – the face and neck; a red rash. However, now when I am utterly exhausted I experience a full body flush, from my toes to the top of my head and believe me it’s not pleasant. At times it coincides with palpitations. Steady thumping, loud familiar beating that I have become accustomed to. Net Cancer with carcinoid syndrome requires regular Carcinoid Syndrome Investigations.

Carcinoid Syndrome

When I last saw my NET specialist I had bloods taken and was asked to pee in the usual container for 24 hours. He telephoned me a couple of weeks later. He asked how I was feeling. I told him the truth, I am struggling some days more than usual, he said he isn’t surprised. My results are elevated , well a tad more than elevated. He recommends an early echocardiogram and a ct scan with contrast of the chest, abdomen and pelvis. I told him I’ve been having problems with the peg; the balloon bursting and the nurses putting in 20 mls of water on The Monday, the following Monday only 9 to 12 mls of water left in the balloon. He said he would get them to look around the peg site whilst in ct scanner.

Within 10 days I was seen at East Lothian Community Hospital in Haddington for my echocardiogram. Steve drove me right to the door. There was masks, hand gel and gloves provided on a desk. At the reception desk the receptionist directed me to the appropriate area. Just a very short walk down the corridor and I was there. Waiting area 3. Five minutes later a lovely radiographer called my name. She had her mask on and escorted me to the room. She asked if I had an echo before, I said I had. She explained exactly how things would go today, helped me onto and then told me how to lie on the couch, put my left arm up and hold onto the handle. This lovely lady made me feel completely relaxed. She talked me through the whole process. Despite the procedure taking around 45 minutes it was painless and actually dare I say it relaxing. Echocardiograms are a necessity for people with carcinoid syndrome. Since many of us get carcinoid heart disease.

CT Scan

Seven days after my echo I was at The Western General Hospital in Edinburgh for my CT. I got a letter explaining it would be best if I entered the hospital alone. Detailing exactly where to go and what would happen. When I entered the main building, again a table with gloves, gel and masks. Off I went to the desk of main X-ray. Approximately 24 inches from the reception desk there was tape as a marker to stand at. I held up my letter and the receptionist scanned it from afar. I took a seat in the spacial distance waiting area. A warm friendly face came to me with a jug of contrast. Yes you do have to drink all this I’m afraid, but you have an hour to do so. Hour passed, Jug drunk, radiographer took me to the CT area. I sat on the big blue chair. She looked at my arms, which one is better? Take your pick I said. She tried the right, got in, blood bounced back into the syringe, vein collapsed. Tried the left, nothing. I will go get someone else she said. I told her it wasn’t her fault, getting into my veins is always a problem, the phlebotomist usually uses a butterfly to take blood. Unfortunately today the cannula needed to be on the bigger side, the solution that was going through whilst I was getting my scan was going to be thick and sticky. After a second try the next radiographer finally had better luck. Time for my CT scan. Escorted to the room, the pleasant ladies assisted me on to the scanner, hooked me up and the donut did its business. The familiar voice of breathe in and hold. Then the solution going in. No matter how many times I get this scan, know this is going to happen I still have the same feeling; strange taste at the back of my throat, oh my that hot flush feeling and then the thinking that you have wet yourself. All finished. A lovely young gentleman came in the room, helped me of the scanner, escorted me out the room and took me to the waiting area. He asked if I was ok, I was shivering and pale, I explained I’m always freezing. A nurse came with a blanket and wrapped it round me. Pampered or what!! He told me I would have to sit for 15 minutes before getting my cannula out, just to make sure I was ok. I was; a jolly nurse took it out. I set up my peg feed and resumed my body back to normality.

I met my hubby at the entrance of X-ray and we made our home. When I got home I was ready to put my feet up for the day. In the evening I checked my emails, one from my net consultant checking in on me. I let him know thats the scans done. He sent a reply back. Wonderful service from our NHS. Especially during these difficult times. Many tasks have become a new normal for some. Maintaining social distance, offering masks, gel, gloves, etc and keeping everyone happy and getting things right is an extremely difficult job. For this I Thank you from the bottom of my heart. Without my district nurses, doctors, consultants, hospital staff, dieticians, occupation therapists, pharmacist etc My family and I would find life impossible.

6 replies to “Carcinoid Syndrome Investigations

  1. Well done for doing all that without hubby. It’s all sounds so familiar As my husband used to have all these tests and procedures done and we always went as a team. I can’t imagine what it would be like for you waiting on your own. Keep strong and keep smiling x

    Liked by 2 people

    1. Thanks for your comment. Yes, in these difficult strange times we need to keep numbers at the hospital to a minimum. My hubby took me right to the door and knowing he was there waiting for me to come out helped the lonely time go quicker. As usual I keep my Popeye muscles going and turn that from upside down. How are you? Xx


  2. My late husband was pan-hypopituitary, and it affected his entire endocrine system. Only the stalk of a pituitary gland. I can empathize with how it affects you. He was always red too. It affects so much.

    Liked by 1 person

    1. Thank you so much for your comment. Your frankness is much appreciated. Yes when it affects the entire endocrine system it really starts to get a hold. The redness drives me crazy at times x


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