Patient Advocacy - Ronny Allan - Living with Neuroendocrine Cancer

22May 2014 by Ronny Allan 1 Comment

My blog goes International!

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…

19May 2014 by Ronny Allan 1 Comment

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

Patient Advocacy

[caption id="attachment_678" align="alignnone" width="640"] Cold and about to be wet![/caption] 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 had a few occasions where we got wet but we just had to get on with it - fortunately our…

18May 2014 by Ronny Allan 1 Comment

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

Patient Advocacy

[caption id="attachment_4300" align="alignleft" width="300"] My 4 Grandsons (and me if you look carefully!) - picture taken in 2015[/caption] 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 grandsons, 2 each from my son and daughter, aided and abetted by…

17May 2014 by Ronny Allan 1 Comment

Dr Google will see you now

Humour, Patient Advocacy, Survivorship

Whenever I need to know anything nowadays, I mostly just look on the internet and sometimes I ask my virtual PA 'Alexa' to look for me! However, you need to be very careful in acceptance of what is credible information and what isn't.As a relatively experienced health blogger and activist, I like to think of myself as 'internet savvy', so I occasionally find myself using 'Dr Google' to diagnose my own aches, pains and unusual feelings (and I confess to using it to help others). I mostly find there are no real or definitive answers online for many patient reported issues. Although I seem to learn something on each piece of research, I also find some really worrying stuff. Some symptoms can have dozens of reasons and I often realise…

16May 2014 by Ronny Allan 1 Comment

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 of such missions (and cost of course). Nobody ever expected to find life on the moon but the excitement about finding life outside earth was as exciting then as it…

14May 2014 by Ronny Allan 4 Comments

If you suspect it, you can detect it

Patient Advocacy

I thought long and hard about today's post because no matter what I say, it will pale into insignificance when put alongside the words of Stephen Sutton who sadly died today at the tender age of 19. The words used by his mother are particularly powerful. He was certainly a courageous, selfless and inspiring man. However, although he successfully raised £3.2million for Teenage Cancer Trust - a phenomenal amount for a very worthy charity, I believe Stephen also leaves behind many other very valuable legacies and lessons. I'd like to focus on two in particular. Social media. This is one of the key technical innovations of the last 20 years and has changed the way in which society lives and communicates and it's still evolving. It has altered the way…

10May 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 time on my liver to remove several secondary tumours. I was told it would be done using 'keyhole' surgery. Fortunately for me, Neil Pearce is one of the world's most experienced…

09May 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 example to all. My own cancer type is not as dangerous as this one. However, I did have some fairly extensive surgery from the same surgeon and reading this story…

06May 2014 by Ronny Allan 1 Comment

F words

Patient Advocacy

[caption id="attachment_173" align="aligncenter" width="284"] Does my flush beat yours?[/caption] A few 'F' words today :-) Flushing In early 2010, I had been experiencing mild and infrequent warm feelings in my face and neck and I did notice a slight reddening whilst looking in a mirror when it occurred. It was odd and nothing like I had experienced before. I thought nothing of it, dismissing it as something to do with my age! When I was going through the diagnostic phase some months later, the Consultant who carried out the initial set of tests was interrogating me (literally) for any clues which could help him pin down the nature of my problem (I now know he had evidence of cancer but not the type). I ran through every single niggle…

05May 2014 by Ronny Allan 2 Comments

Exercise – it’s a free prescription

Patient Advocacy

[caption id="attachment_147" align="aligncenter" width="480"] Gorgeous Chris xxx[/caption] [caption id="attachment_146" align="aligncenter" width="700"] Check out my new Fat Face hat :-)[/caption] My E Blog on 5 May 14. Exercise I'm no stranger to exercise having served for 29 years in Her Majesty's Forces. However, I'm not 21 anymore and I have some health challenges. Chris isn't 21 either - despite her youthful looks (brownie points...). Some people are quite impressed by our commitment to walk 84 miles. However, I'm hoping that's going to be the easy bit as the training regime we are putting ourselves through has been hard work and time consuming. Today we walked 12 miles with Chris suffering neck and back pain and me with a sore right toe. This followed a 9.5 mile on Saturday and an 8…

03May 2014 by Ronny Allan 2 Comments

The subject nobody wants to talk about

Patient Advocacy

There are quite a lot of words beginning with C so I'll only cover a few. The Big C The subject which must not be discussed - or is it? I read a useful article a month ago where the writer debated where we might be if, 50 years ago, we were as open about the 'big C' as we are now. Nowadays you cannot turn a page in a newspaper without seeing a story of sadness, inspiration or medical science progress. Certainly the latter is behind some of the change in thinking in a number of ways. People are living longer and we now have much better tools to discover and treat Cancer (there I said it). Moreover, because we are more open about Cancer, there is more awareness. According…

02May 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 event in Oct. Cheers Steve - you're a very generous guy - maximum respect. I'll drop off the gorilla suit shortly :-) Blood Tests I touched on this important topic…

01May 2014 by Ronny Allan No Comments

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 homewards! Army I've had some amazing support from ex Army colleagues, not just a donation to the cause but also the use of their time and access to their contacts.…

30Apr 2014 by Ronny Allan 4 Comments

What’s it all about?

Patient Advocacy

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! I'm still intending to do this but may cover more than one letter in a single blog, thus now requiring less than 26 days in the lead up to the walk. You've probably heard the term "I'm not doing this for the good…

Category: Patient Advocacy