
Neuroendocrine Tumours (NETs) – Vitamin D (Cholecalciferol / Ergocalciferol)
Vitamin D deficiency is demonstrably more common in people with neuroendocrine tumours (NETs) — but that does not automatically mean your deficiency is caused by

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I sometimes need motivating and it’s really easy to put off doing ‘hard things‘, instead opting for your comfort zone of staying at home. It’s often easier to say, “I can’t” than it is to say, “I can”. And yet, each time I hesitate about saying “I can”, I always end up refreshed, enthused, and happy I didn’t say “I can’t”. So, this is the story of my daytrip at the end of summer (and pretty much many days out).


Those who know about the 5 E’s of (so called) carcinoid syndrome will get the meaning of this story straight away. For those unaware of those 5 E’s, read about them here. First thing to note is that they do not apply to everyone, potentially only affecting up to 10% of all NETs and even then, all 5 won’t apply to everyone. The other point where I have difficulty is that they might also apply to other types of NET – so another issue with the blanket ‘carcinoid’ once again.
I started this post with a paragraph on the difficulties of being motivated when you have cancer. I share that trait but have made great inroads over the years. However, I have to say I still depend on others, mainly my wife, to keep me on track!
I was so enthused by a trip I didn’t want to go on, I invented The Other 5 Es
Everywhere you look, there are experts telling us that exercise is good for us, even those with cancer can benefit. There are even programmes being introduced in the UK prescribing exercise before surgery (prehab), apparently it can make patients withstand the surgery better and recover quicker. When health experts say exercise, they don’t really mean you have to climb up Mount Kilimanjaro or run in the London Marathon. Everyone needs to stick to their own abilities and conditions, even gardening is exercise. I’m a believer in doing exercise and try to get beyond the motivation issues to do it. Exercise also overlaps with other areas such as Eating and Emotions below. Sometimes you gotta climb that hill and when I see a hill, I always fancy going up it, even when I know it’s going to hurt. For me it’s much more than exercise. So, on the daytrip last week, we found a hill and went up it. It wasn’t a big hill, but it was a steep hill. The view was very nice.

Epinephrine is another word for adrenaline and the top of the cliffs made me slightly uneasy (I have a slight fear of heights) and so the ‘fight or flight’ feeling kicked in as I tried to get near the edge for the best pictures (the area is known for coastal erosion). Also, some types of exercise can increase adrenaline levels. Clearly, I didn’t have any anaesthesia on my day trip (the real reason for the inclusion of epinephrine in the 5 E’s), but the exercise above set my heart racing, my heart rate was up to 130 at the top before slipping back down to my ‘cool as a cucumber’ 70 ish. No crisis situation!

Our daytrips are normally well planned, but we decided to play this by ear with the intention of eating out. We opted for an ‘outdoor’ takeaway, and I decided to enhance the day by giving myself a treat. I know I need to eat healthily but I opted for something which I’m told to avoid (mainly due to my surgery and side effects of treatment). I once said to a room full of NET dietitians, “I see my diet as the risk management of my quality of life“. Life is about management risk and it’s a balance between having a good or not so good quality of life.
What I meant by that is that it’s OK to have a treat now and then – the dietitians agreed. So, we had a firm British seaside favourite – fish and chips followed by an ice cream cone. The picture below is represented by the piece of cheese (the fish and chips and then the ice cream) and the 10 x digestive enzyme capsules I took with the food is the crash helmet to offset the blow of eating the metaphoric cheese.

We’ve had to give up so much since diagnosis – so now and then eat something naughty if you can tolerate it and it doesn’t give you any nasty effects.

The emotional side of cancer is a topical subject, mainly because it can be overlooked. In NETs and in particular ‘carcinoid syndrome’, it can be aligned to hormones. I do seem to remember my facial flushing was linked to stress which is course linked to hormones, so I get this. I have to say that my daytrip was an absolute stress reliever and something I totally recommend. The combination of the nice drive to a nice location in relatively nice weather, a nice bracing walk in the sunshine and sea breeze, followed by a something you really enjoy eating. I’m lucky to have Chris (Mrs Motivator) by my side which completes the total effect of the daytrip.

Last but not least, the 5th ‘E’. Ethanol is another word for alcohol (5 Es sounds better than 4 E’s and 1 A). Another topical subject and another thing that makes us all different. I decided a long time ago to vastly reduce my alcohol intake, particularly as I had liver surgery rather than syndrome connections. I wasn’t a really big ‘drinker’ so it was an easy transition. In any year since diagnosis, you could count the number of beers on one hand. However, this year, I found alcohol free beer tastes no different than regular beer, so I can now enjoy something I used to enjoy without the worries. Cheers!

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Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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