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.

Best Friend

Today is a special day. It’s the anniversary of the wedding of my hubby, Steve and me. We got married in August 1986. A lot of water has gone under the bridge since then. We have had amazing fabulous times, laughed so much it hurt. Gone to so many lovely places together, shared many happy times and learned to love, live, cry and smile every day. Although life hasn’t always been easy, and there have been turns in the road that have tried our strength. We have always had each other to come home to, share the burden and lighten the load. I feel very happy to have my husband as my Best Friend


Steve and I are proud of our two children and we are pleased to have beautiful grandchildren. It’s a tremendous feeling to have such little ones warming our hearts.

Our home is a happy one filled with love, laughter and most definitely plenty of chatter. Steve and I at home with two loyal labradors, Buddy and Bella. Regular welcomed family visitors keeping us on our toes and entertained. Never a dull moment in our household.

Never a dull moment in our household. On the day we got married; Friday 22 August 1986 – I woke up and realised I didn’t have an appropriate pair of shoes to wear. Steve and I jumped on his Honda Superdream and went into Edinburgh for a pair. The sales assistant asked if she could help, I told her I needed a pair of shoes for a wedding, when i explained I was the bride she was taken aback. She said I hope the groom is more organised. I laughed and said to her maybe you want to ask him and nodded my head in Steve’s direction, as he stood at my side. Oh my isn’t it bad luck to see each other before the vows. We will take our chances we said. THIRTY FOUR YEARS LATER I COULDN’T LOVE MY HUSBAND ANY MORE THAN I DO TODAY.

Harley Davidson run in The Scottish Borders

After a day of swithering whether I should accompany my hubby and some of our good friends from on a mates run. I hadn’t had the best of days, had to phone my medic team and get one of them to come in on an emergency. After only two weeks my gastrostomy tube had to get changed. Believe me it wasn’t a pleasant experience. I rested all afternoon then decided the company of good pals and some fresh air would do me the world of good. So at 5pm on the Friday evening I got myself into my bike gear all ready for a Harley Davidson run in The Scottish Borders.

My hubby Steve spoke to our chum Scott and put it to him “show us your ride” Steve and Scott messaged each other back and forth. Scott and his wife Shirley lead a scenic route. We met up with them in Galashiels. The drive from our place in Boggs Holdings, Pencaitland to Galashiels was a reminiscent one. We took the A6093 to the junction of the A68 and turned left, took the first right and headed towards Gorebridge, passed the entrance of Vogrie Country Park, my mind took me back to many walks I went on with my hubby, children and dogs, such happy times we had, I now hear lovely stories from my grandchildren when they have visited and played at the park and walked the dog. We made our way along the narrow twisty road towards Borthwick, passed Borthwick Castle, where Mary Queen of Scots sought sanctuary in June 1567 when she learned Scottish nobles planned to capture her. You can find out more about Borthwick Castle at I was happy to drive pass our sons old primary school, Borthwick Primary which is now a private residence. We drove up the twisty steep incline to North Middleton.

From North Middleton we took the A7 and headed south. Our destination was to meet up with our group in Galashiels. The drive down was wonderful. We enjoyed a somewhat familiar drive, one we did regularly several years ago, what seems like in another lifetime. The scenery was beautiful, typical of Scottish countryside, as I looked ahead clouds rolling in the blue sky, many shades of green on the hillside; home to the happy skipping sheep, bleeting as we drove passed them. The river looked inviting as we drove by, I could have asked Steve to stop at the side of the road and took a paddle. As we drove down the A7 we rode through Falahill, Fountainhall, Torquhan, Stow, Torsconce, Buckholm and finally arriving at Galashiels.

For the hungry horace’s we met up in Macdonalds car park. For those who wanted could join an organised social distance queue for food or got to the loo. Whilst the others ate, went to the loo and blethered. I sat on the ground in the car park and caught my breath. I don’t mind admitting I was feeling a tad wobbly when I reached my milestone, Galashiels and I could have done with going home. The ride from ours to Gala was more than enough for my body on this particular day. However, my want and desire to finish the route, be out with our friends and enjoy the time on the fatboy outweighed how I was feeling. Despite feeling my heart beating so fast that I thought it was going to jump out of my shirt. And the worry that my blood sugar wouldn’t keep up all the way round despite having my gastrostomy tube running. My body ached. Feed checked, all sorted and feeling better. After the rest, I took photos of the others and their bikes. When we were ready we took the A7 and headed towards Hawick.

Scott took the lead with wife Shirley in her Harley Davidson behind him, both Borders folk made it ideal for them to choose the route. I was looking forward to this run. Will it live up to my expectations? I hope so…….

We drove 6 miles from Hawick, Scott took us to the picturesque village of Bonchester Bridge, lying on the Rule Water. Leaving the delightful village the route did not disappoint and the scenery just kept on giving as we headed over towards the A68 and rode to the border view point.

The Scotland England Border on the A68 is an excellent opportunity to stop, take a break and a wee photo. We all had a great time; even had time for The Vickie Green Challenge.

Vicky Green Challenge

We stopped for a while at The Border View Point, giving us a good rest point as well as the opportunity to take photographs. Then had an enjoyable drive down to Jedburgh. Memories came flashing into my mind as we drove through. Passing the rugby ground, seeing the large posts, wonderful recollection of my son Stuart playing second row for Haddington. The sheer delight of Haddington under 16’s winning the cup. What a day that was. Such a great feeling standing at the sidelines cheering the team on, screaming at the top of your voice. Regardless of the weather, rain, hail or shine. Continuing our journey we made our way to St Boswells, turned right, opposite The Buccleuch Arms. Lead by Scott we climbed up a beautiful steep road with some unpredictable twists and turns. Drove a route with amazing trees, lush grass and beautiful plantation. We arrived at Scots View; one of the favourite views of not only Sir Walter Scott, but of my parents. Looking over the valley of the river tweed I could clearly see why. It is not only a beautiful view, it is calming and relaxing. I felt quite at one with myself soaking in the atmosphere. My parents took my sons Tony & Stuart and their cousins Lindsay & Robert here, as well as many other places. However, Scots View is particularly memorable not only for the view, but it was the day my son Tony fainted.

Scots View

After spending time at Scots View we took the back road and headed to Lauder. Thereafter, our wonderful hosts, Scott and Shirley headed back to their home in Ancrum. The Edinburgh based folks headed towards auld reekie and Steve and I made our way to Pencaitland. We went straight down the A68 turned right signposted Haddington on the A6093, through Pencaitland till we reached our home in Boggs Holdings. Buddy and Bella were pleased to see us, as I was to see them. As much as I enjoyed the ride it was good to get my feet up. I had a beautiful evening with lovely people. It’s so nice to be tired for a reason. It’s good to meet up with others and see places I haven’t seen in a while, especially ones that provoke memories. Looking forward to the next run.

Scots View