Awareness - Ronny Allan - Living with Neuroendocrine Cancer

10Nov 2014 by Ronny Allan 2 Comments

Every Day is World Neuroendocrine Cancer Day!

Awareness, Inspiration, Patient Advocacy, Survivorship

Opinion: In 2014, I experienced (so called) NET Cancer Day (10 Nov) on a major scale for the first time since its inception. Prior to that, it didn't really do that much for me. Spookily, I even woke up on 10 Nov 2010 after a major 9-hour surgery. Read about this here - I even woke up on November 10th after major surgery. You'll note the title of this post is "World Neuroendocrine Cancer Day" and that is because "NET Cancer Day" is not good awareness - besides the terrible grammar, there is no such term as "Neuroendocrine Tumour Cancer". And if we use just "NET" then in epidemiological terms we exclude the Neuroendocrine Carcinoma guys who need just as much awareness as we do (perhaps more). The build-up to…

10Nov 2014 by Ronny Allan 10 Comments

I woke up on World Neuroendocrine Cancer Day

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment

1 year after 2 x surgery Macmillan Cancer Support featured this post CKN featured this post 5 years after 3 surgeries 10 years after diagnosis 12 years after first surgery Macmillan Cancer Support featured this post CKN featured this post It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and pinned down by the dozen or so tubes going in and out of my weak and battered body. I can still remember the feeling today; it was like…

03Nov 2014 by Ronny Allan 32 Comments

The Human Anatomy of Neuroendocrine Cancer

Awareness

OPINION. Sometimes when I'm searching for cancer information, I'm presented with a 'pick-list' of types which mostly tend to be anatomy based. I do find it annoying when I cannot find my own cancer on the list .....some respectable organisations are just not as up to date as they should be! Neuroendocrine Cancer patients and advocates then have to shout quite loud for recognition and understanding. One of the key facets of Neuroendocrine Neoplasms (NENs) is that they are not tied to a particular part of the human anatomy. Unlike (say) lung cancer, where the primary is in the lung, or breast cancer where the primary can be found in the breast, NENs arise from a cell type which can be present more or less anywhere in the body. Ignorance of…

27Oct 2014 by Ronny Allan 11 Comments

Detective Doctors

Awareness

Share this post please The sooner any cancer can be correctly diagnosed, the better chances of a curative scenario for the person concerned. However, some cancers are in the 'difficult to diagnose' category. Neuroendocrine Tumours (NETs) are in this category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. This is one of the reasons there have been many lengthy diagnostic delays. In many cases, it can be very quiet leading to incidental diagnosis at an advanced stage. It's SNEAKY! In some cases, it can be a little bit noisy. For example, some of the most common misdiagnoses appears to be Irritable Bowel Syndrome (IBS), asthma, or menopause. Patients complain of abdominal pain, wheezing, shortness of breath, diarrhea, flushing, palpitations and a whole host of other minor issues. There are…

26Aug 2014 by Ronny Allan 3 Comments

If your Doctors don’t suspect something, they won’t detect anything!

Awareness, Patient Advocacy

Opinion:One of the most discussed and debated Cancer issues is late diagnosis. Cyberspace is full of disturbing stories and many different cancers are involved. Some cancers are notoriously difficult to diagnose, meaning that awareness and education needs to extend from the general population to healthcare professionals at all levels. The latter is a challenge as first-line physicians battle to deal with thousands of different conditions, many of which have similar presentations. Neuroendocrine Neoplasms have a record of being difficult to diagnose which often leads to late diagnosis. Moreover, due to their often-silent nature, a late diagnosis is often a default scenario as no intervention was possible without a symptomatic patient.Neuroendocrine Neoplasms - Under-diagnosed or Under-reported?Like many other Cancers, Neuroendocrine Neoplasms (NEN) is one of a number of 'difficult to diagnose'…

12Jun 2014 by Ronny Allan No Comments

My stomach sometimes cramps my style

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship

When planning to walk Hadrian's Wall in the north of England in 2014, I carried out a number of risk assessments (as all good Project Managers do!). In true 'Donald Rumsfeld style', I considered all the 'known unknowns' and the 'unknown unknowns'. Anybody who doesn't is either reckless or supremely confident (the latter can sometimes be the same as the former......).As a Cancer patient, there were some issues I had to consider which might not have made the list for most walkers covering this sort of distance and this type of terrain. One of the issues I occasionally experience is stomach cramps, not that frequent but problematic and quite painful when they occur. If you've had abdominal surgery, you might be having to deal with issue. Many Neuroendocrine Tumour (NET)…

31May 2014 by Ronny Allan 4 Comments

Hadrian’s Wall Day 6 – Mission Complete!

Awareness, Inspiration, Living with Neuroendocrine Cancer, Travel with Ronny

[caption id="attachment_1144" align="aligncenter" width="2560"] Sunset over the Solway Firth (Scotland in the distance)[/caption]The final leg of the our Hadrian's Wall walk took us from beautiful Carlisle to the remote coast of North Cumbria at Bowness-on-Solway. We are staying there tonight before beginning our journey home tomorrow (via Newcastle). Amazingly our digs have a wicked view of the Scottish coastline and the setting sun - see picture above which was taken from our room. It was pretty surreal to have finished 6 days of torturous walking but also to be able to look at such a wonderful view of the country in which I was born.Some people say final leg of the walk is pretty boring but Chris and I disagree. Yes it's flat but the first half is a wonderful…

22May 2014 by Ronny Allan 1 Comment

My blog goes International!

Awareness, Patient Advocacy

One of the most interesting statistics in my blog app is the total number of views recorded each day. It even breaks the total down into which posts were most viewed and which countries the viewers were from (but please note it does not identify the name or any other details of viewers). I'm always very pleased to have readers from overseas locations - I hope they enjoy reading my blog and find it useful. To date, these include readers from USA, Australia, Canada, New Zealand, Barbados, Belize, France, Germany, Switzerland, Belgium, Netherlands, Luxembourg, Portugal, Austria, UAE, Bahrain, Philippines, Nigeria, Kenya, Croatia, Ireland, Sweden, Italy, Japan, Czech Republic. Neuroendocrine Cancer is not unique to UK, it's an International disease. If you research, you will find Neuroendocrine Support groups in most countries. There…

20May 2014 by Ronny Allan 1 Comment

Diagnostic Challenges

Awareness, Living with Neuroendocrine Cancer, Treatment

I was checking my statistics this morning and found the most viewed post to date was published on the day Stephen Sutton passed away. I didn't really want to jump onto the Stephen Sutton bandwagon but when I found on the day of his passing that it had taken 6 months to diagnose his bowel cancer, I knew this would be relevant to Neuroendocrine Cancer awareness, particularly important as it's one of the primary aims of my blog. I'm thinking the top viewing score to date is not because it mentioned Stephen Sutton (sad as that event was) but because the issues he faced are well known to Neuroendocrine Cancer patients, many of whom are readers. In the past week, the newspapers have published several follow up articles on…

04May 2014 by Ronny Allan 14 Comments

Diagnosis – I’m no longer in control

Awareness, Survivorship

The clouds are gathering. Diagnosis. The dreaded moment when you're looking at an Oncologist and waiting to be given some news. I'd been to a routine annual Asthma clinic, referred to my GP, referred to a specialist, had a bunch of tests, and now referred to an Oncologist. There were many hints along the way. I felt in control. Rewind 2 months to May 2010...... I was happily working, getting stuff done, making things work. I had sufficient autonomy and freedom of manoeuvre. I felt in control. I'm happy as a pig in the proverbial! My annual Asthma clinic comes along and it's an opportunity to work at home for the day....yahoo - no commuting! "Hi Ronny" - "Hi Liz". Blah Blah Blah. However, glad Liz was taking it seriously - I…