01 Oct 2016
By Ronny Allan
1 Comment

Neuroendocrine Cancer: Patient Power!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , ,
There's a saying that the patient is the most underused person in healthcare and I think there's a lot of truth in that. However, I would suggest with Neuroendocrine Cancer, it's less true than for many other cancers. There are so many NET Cancer patients out there who know quite a lot about their cancer, and in some detail. Even the great Dr Liu once said that NET Patients frequently know more about NET Cancer than their doctors. If you go onto Twitter, if you go onto Facebook, if you read newspaper stories, you will find cancer patient stories in…
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19 Sep 2016
By Ronny Allan
5 Comments

“Not the Stereotypical picture of sick”

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , ,
I've never really understood why people get upset or annoyed when someone tells them they look well. Maybe I just think differently than others?  I like to look for the positive things these well-meaning messages can convey.  Most people are just trying to be nice, even if it comes over clumsy. Personally, I love it when people tell me I look well, I mean who wants to look unwell?  If I'm feeling mischievous, I sometimes say "yes..... but you should see my insides".  Most of the time, it dispels any awkwardness and they follow my laughter. Yesterday, I listened to a few…
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19 Sep 2016
By Ronny Allan
14 Comments

Procrastination – it’s a killer

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , ,
It's amazing to think that one minute I'm back from a holiday in the Caribbean and the next minute I'm being told the inside of my body is a 'train crash'. Just how does that work?  In July 2010, I said to the Gastroenterologist investigating my low hemoglobin "I'm not even feeling ill". He sent me to an Oncologist who then told me that without treatment, the prognosis wasn't good (i.e. I would eventually die). I also told him I wasn't feeling ill ....as if my protest was somehow going to reverse the situation! The term 'silent cancer' was apt in…
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24 Aug 2016
By Ronny Allan
8 Comments
Stop talking about it, just go do it!

Stop talking about it, just go do it!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Travel with Ronny, ,
"Yes, we must do this one day ......." and then we don't! We're all guilty of it aren't we? For years Chris and I have discussed travelling around the coast of Scotland and we're just back from a fantastic holiday where we saw some wonderful scenery. And we did the Edinburgh Tattoo on the way there! Yet another ....... "We must do this one day......." I've even decided that looking at this wonderful scenery is a form of medicine and a way to be inspired to do more. Admittedly we were motivated by the recent declaration of the new "North Coast 500"…
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18 Feb 2016
By Ronny Allan
12 Comments

Patient power – use it!

Inspiration, Patient Advocacy,
I recently wrote a blog entitled "Trust me, I'm a Doctor" which was a genuine attempt to say that we should try to work with our Doctors.  However, I also covered the issues that Neuroendocrine Tumour (NET) patients face in finding someone who understands their disease and how best to treat it; and that can on occasion lead to issues with doctor-patient relationships and communication.  The blog then commented on a number of tips for better doctor-patient relationship and communication.  These tips were provided by a Doctor via my friends in Cancer Knowledge Network. In the blog above, there was an underlying…
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11 Feb 2016
By Ronny Allan
12 Comments
Tips for doctor patient communication – “Trust me, I’m a Doctor”

Tips for doctor patient communication – “Trust me, I’m a Doctor”

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , ,
Reviewed and updated 4th June 2022Patient doctor communicationsOne of the most frequent posts on patient groups and forums is about the Patient-Doctor relationship (or occasionally a lack of it.....).   Personally, I have a lot of time and respect for all medical staff and I suspect that has been influenced by my general life experience, perhaps cemented since my diagnosis of metastatic Neuroendocrine Cancer in 2010.  The vast majority of people tend to trust Doctors and I'm a bit old-fashioned in this respect.  If you have metastatic Neuroendocrine Cancer, you see medical staff a lot!  Relationships and communication can therefore become more important than ever.However, people with less…
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03 Feb 2015
By Ronny Allan
27 Comments

Lanreotide – Four more years

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , ,
This post has been superseded by the following: Lanreotide: it's calling the shots - click here. Lanreotide:  10 (then 13) more years please! - click here. Lanreotide vs Octreotide - click here. Original post: The UK general election steps up a gear this month and social media is playing a huge part in the debate leading up to 7 May 2015.  In the USA, the different parties are busily working on their candidates ready for 2016. It appears that politicians worldwide, are keen to exploit all areas of communication to eke out votes from the young and old who now use social media on a scale…
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05 Dec 2014
By Ronny Allan
0 Comments
Neuroendocrine Cancer – not an exact Science

Neuroendocrine Cancer – not an exact Science

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, , , , , , , ,
UNDER CONSTRUCTION I've been interested in science since my school days and seem to remember it being separated into Biology, Physics and Chemistry for study and examination purposes. Biology wasn't on my radar and as I found Chemistry boring, I focused on Physics which seemed to be more 'modern' and exciting. Curiously, at the beginning of my Open University degree course some 25 years later, I found the Biology and Chemistry modules of my foundation year the most enjoyable part of the whole 6 year study.  Different teaching methods? different teachers?  Perhaps, but I suspect some maturity was involved plus a hunger for new knowledge. I seem to have caught the learning bug again since…
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01 Dec 2014
By Ronny Allan
2 Comments
Tobacco and Cancer: A smoking gun?

Tobacco and Cancer: A smoking gun?

Patient Advocacy,
I've never smoked so I'm reasonably confident my own cancer experience is not related to this type of personal lifestyle.  I did, however, grow up in a world where smoking was widespread and a generally accepted behaviour. We now know that smoking causes more than four in five cases of lung cancer. Lung cancer not only has one of the lowest survival rates of all cancers, but is the most common cause of cancer death in the UK.  Shockingly, most of these deaths are preventable, by giving up smoking in time or not starting at all. Smoking also increases the risk of at least 13 other…
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30 May 2014
By Ronny Allan
2 Comments
Hadrian’s Wall Day 5 – Pass the morphine!

Hadrian’s Wall Day 5 – Pass the morphine!

Patient Advocacy
  When I was in hospital for major surgery, I remember being briefed by my excellent nursing staff about all the tubes and pipes intruding and protruding into/from my body. One of the most important ones in the early days was known as PCA - Patient Controlled Analgesia. Basically, I could click a button whenever I felt the post-surgical pain was too much. As this administered morphine, safeguards were built in - for example, the machine limited me to 2 clicks within 5 minutes and then it wouldn't accept a request for another 5 minutes. That handheld push button device…
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29 May 2014
By Ronny Allan
2 Comments
Hadrian’s Wall Day 4 – Welcome to Cumbria!

Hadrian’s Wall Day 4 – Welcome to Cumbria!

Patient Advocacy
That was a long day and a hard walk!  Started at Steel Rigg and ended at Lanercost and we were accompanied by our friend and ex-Army colleague, Jim Waterson.  Jim and I served together in Germany 1977-79 and then again in Blandford Dorset 1983-84.  Usual banter all day brought back more memories and news about some old mutual friends.  Thanks to Jim for a great day. Thanks also to Jennifer for picking us up to take us to the start point on the wall and vice versa at the end.The route was a mixture of hilly crags and rolling fields…
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28 May 2014
By Ronny Allan
5 Comments
Hadrian’s Wall Day 3 – Spectacular but wet!

Hadrian’s Wall Day 3 – Spectacular but wet!

Patient Advocacy
Chris and I adopted the famous military 'buddy buddy' system this morning by checking each other's feet and applying blister pads.  We then set off on a hilly section with some spectacular scenery.  But first we collected our friend Dave Taylor who was walking this tough section with us.The forecast rain didn't arrive until around an hour into the walk and then another hour after that it was time for waterproof trousers.   Pretty rough underfoot with plenty mud and damp grass.   Stonework was in some places dangerously slippy.  I fell once, fortunately I managed to miss landing on…
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27 May 2014
By Ronny Allan
4 Comments
Hadrian’s Wall Day 2 – The wall appears

Hadrian’s Wall Day 2 – The wall appears

Patient Advocacy
This was the first real piece of the wall we say and it's the second day We must have been doing a blistering pace today!  Four of them – I claim 3 and Chris has one.  Nothing spectacular but a discomfort we could do without. Blister kit has been deployed and resupply to see us through the week will RV with us on Day 4 at Steel Rigg (cheers Jim W). In hindsight I should have deployed the blister kit last night as I had a feeling my tender feet would be even more tender by end of play today.…
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22 May 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,…
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19 May 2014
By Ronny Allan
1 Comment

If it’s not raining, it’s not training

Patient Advocacy
Only a week left until Chris and I set off on our 84 mile trek across Hadrian's Wall in the North of England.   We've been training for this since January 2014 and probably covered sufficient distance to have walked the wall 5 times over!   Didn't stop us going for a fast short walk this morning and despite the heat there was no sweat.   I think we're ready :-) For the last few days we've been thinking it might be tougher if this heat continues.  Only a month ago, we were saying it might be tougher with all the rain we were having!  We…
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18 May 2014
By Ronny Allan
1 Comment

“I may not be rich, but I do have priceless grandchildren”

Patient Advocacy
Most of us will have experienced the ubiquitous quotations that somehow manage to go viral around Facebook and emails? Mother, Father, Son, Daughter, Grandson, Granddaughter etc.   I instinctively want to share those and like the post but something nearly always prevents me from doing so.  I suspect there is something in me that says "don't follow the crowd" or perhaps I'm just a shy private person at heart?  (I can hear some of you laughing .....).  However, today, I'm publishing the fact that grandchildren are indeed wonderful!  So what has brought on this sudden emotional outburst? I have 4…
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16 May 2014
By Ronny Allan
1 Comment
Is there life on other Planets?

Is there life on other Planets?

Patient Advocacy
When I was a young lad, I was fascinated by Astronomy.  Not only could I tell you the name of each Planet in order of distance from the sun, but also the actual distance!  In those days, space travel was really taking off culminating in the first manned moon landing in 1969.  I remember staying up all night with my dad so I could watch it on TV (in black and white of course).  The talk then was of where next, Mars? After all this time, we still haven't landed people on that Planet - just shows you the complexity…
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10 May 2014
By Ronny Allan
2 Comments

Through the Keyhole?

Patient Advocacy
  Through the Keyhole is a Panel Game Show on telly originally hosted by Lloyd Grossman (who?) and then Sir David Frost.  It was resurrected last year hosted by Keith Lemon.     Sorry to disappoint you but this blog is about a different type of keyhole.  Today I'm on 'K' words (I drew a blank on J). Keyhole Surgery After I had major surgery in Nov 2010, I left the hospital knowing that I'd be returning later for another but I needed to be fit enough first.  This took some time but in Apr 2011, I returned for further surgery, this…
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09 May 2014
By Ronny Allan
1 Comment

Queen Mother of the Isle of Wight

Patient Advocacy
  Decided to do a one off today after reading a story published on 7 May on the PLANETS Charity Facebook page https://www.facebook.com/pages/PLANETS-Charity/122088044556397?fref=ts The is a story about a lady who was faced with one of the most deadly cancers - Pancreatic Cancer, where the 5 year survival rate has not risen for the last 40 years (another story for another time).  Young and fit people can struggle with this cancer and its treatment so it must be ultra tough at 83.  Her attitude and strength of character in facing up to this terrible disease is very inspiring to me and an…
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02 May 2014
By Ronny Allan
3 Comments

Bournemouth Marathon

Patient Advocacy
  Hope you enjoyed the 'A' blog yesterday.  Some of you might also note I changed the previous blog titles to make them more catchy. Here's a few 'B's Bournemouth Marathon I once ran a marathon aged 28 in Verden West Germany 1984.  I was there defending the free world from Communism (ahem....). It was a tough gig even at that age and the training was even tougher.  I'm therefore delighted to announce that my old mate Steve Davis (pictured above), former Orienteering buddy and 'Quaff Club' member, has nominated my PLANETS Charity page as his chosen cause when he runs this…
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01 May 2014
By Ronny Allan
0 Comments
Army to the Rescue

Army to the Rescue

Patient Advocacy
  I promised you an A-Z so here are some 'A' headlines: Agenda.  The walk is 84 miles long - Chris and I will be walking from East to West over 6 days as follows: 25 May - Staying with friends near Newcastle 26 May - Wallsend to Heddon-on-the-Wall (with Nick Naylor) 27 May - Heddon-on-the-Wall to Chollerford  28 May - Chollerford to Once Brewed (with Dave Taylor) 29 May - Once Brewed to Lanercost (nr Brampton) (with Jim Waterson) 30 May - Lanercost to Carlisle 31 May - Carlisle to Bowness on-Solway 1 Jun - Lazy breakfast in our lodgings and then head south…
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30 Apr 2014
By Ronny Allan
4 Comments
My Blog – What’s it all about?

My Blog – What’s it all about?

Patient Advocacy
This post was generated on 30th April 2014 Welcome to my blog!  My plan yesterday was to blog for 26 days using the alphabet A to Z as a guide for the content.  That would have taken me to 25th May, the day before my walk of Hadrian's Wall commences.   However, Chris and I were playing a game we used to play with our children on long car journeys "I can see something beginning with....."  On analysis, it appears I might struggle with certain letters! Guess what....K, J, Q, U, X, Y and Z are not necessarily the problem!…
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