October 2018 - Ronny Allan - Living with Neuroendocrine Cancer

30Oct 2018 by Ronny Allan 9 Comments

Neuroendocrine Cancer: A Witch’s Brew

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

One of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people. As it's a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Some continue to struggle after. The cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or introduce symptoms which mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma. In addition to common symptoms of flushing and diarrhea, others include generally feeling weak, fatigued, pain, agitated, anxious, dizzy, nauseous, acid reflux, skin irritation, anaemic, lose weight, gain weight, low blood sugar, high blood sugar, heart palpitations, headaches, sweating, high blood…

20Oct 2018 by Ronny Allan 1 Comment

How to Talk to a Cancer Patient Without Being a Complete Twit

General, Humour, Living with Neuroendocrine Cancer, Patient Advocacy

I enjoyed reading "8 rules on how to talk to a cancer patient" because I think much of it is written with 'tongue in cheek'. Great title! In UK we might even spell the word 'twit' slightly differently (UK people will get it!). Some of the rules are directed at doctors and I'm sure some doctors will laugh (if you're a doctor and you didn't laugh, sorry). I think one or two are a bit harsh and could potentially backfire and at least one I partly disagree with. Personally I try to balance my reactions to not come over as a 'pity party' and something which is genuinely offensive or upsetting to me as a cancer patient. I appreciate understanding and empathy, perhaps sympathy, but I certainly don't want pity.…

11Oct 2018 by Ronny Allan 5 Comments

Living with Cancer – Worrier or Warrior?

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

If you only believe what you see on social media, you would probably classify cancer patients into two main groups, warriors or worriers. I guess people have, or adopt, these traits from their cancer experience but I suspect many people are simply 'wired' that way. I also believe there are many people who have a bit of both, perhaps slanting to mostly warrior or worrier, I mean who doesn't worry about a single thing? However, the extent of worrying can often have a negative effect on quality of life. You're not going to stop worrying by simply reading this article but if you read no further, at least check out the lead graphic, it might help putting things into perspective. Warriors I used to do that for a living…

10Oct 2018 by Ronny Allan No Comments

Neuroendocrine Cancer – Short Update from NANETS 2018

Clinical Trials, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs

I would love to go to a NANETS conference but I would need sponsorship or otherwise have to fund my own way there. Seattle sounds like a great place to visit. I would even have been their twitter correspondent had they asked! I've been to the European equivalent twice, they always have theirs in Barcelona it would seem, at least NANETS uses different locations making it more interesting. It's a scientific conference for the most part, but I guess some basic stuff is also covered. However, in the world of instant contact and communications on the internet, together with twitter, one can keep up to speed on what is or has been discussed. One day, NANETS and ENETS will be sufficiently advanced that we can all watch the presentations from…

08Oct 2018 by Ronny Allan 5 Comments

Neuroendocrine Cancer – on your bike!

Inspiration, Living with Neuroendocrine Cancer, Survivorship

There's a Brit saying known as "on your bike" (sometimes colloquially called "on yer bike"). It basically means "go away and stop bothering me" but there are other definitions including some 'Anglo-Saxon' versions (I won't repeat those here!) When I moved to my current home nearly 7 years ago, the removals lorry unloaded our rather dusty bikes (pedal cycles) and stuffed them in the garage where they mostly remained until this year. A couple of months ago, I dusted them off, repaired punctures etc, and basically started putting them to better use. In fact, Chris got a new one out of the deal! I'm reasonably fit (considering) but finding it so easy to opt for the sofa and there's always something worth watching on TV, or something to do on…

01Oct 2018 by Ronny Allan 1 Comment

RonnyAllan.NET – Community Newsletter Covering September 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Summary for September 2018 NET News Several headlines covering the past month: 1. The annual NANETS symposium kicks off in a few days. I'm hoping to bring you news from the event (remotely, I won't be there) and perhaps a summary in next month's newsletter. 2. The World Health Organisation (WHO) has a proposal on their desk to harmonise the grading structure for all types of Neuroendocrine Neoplasms (NEN). I've actually been ahead of the game for over a year since I found out this was coming and it's reflected in my 18 month old post on Staging and Grading. Be careful where you look as many are still behind the curve on this issue. Their proposals are interesting as they are recommending the final removal of the last vestiges…