Ronny Allan – Living with Neuroendocrine Neoplasms – Thanks a MILLION

Ronny Allan – Living with Neuroendocrine Neoplasms – Thanks a MILLION

Awareness, Patient Advocacy, Survivorship
I'm totally astonished to have been able to accumulate a million views of my blog around the middle of June 2019. When I first set it up in Apr 2014, it was just to help spread awareness whilst I was walking the 84 miles of Hadrian's Wall with my wife Chris. I never thought for one minute I would still be doing it today reaching one million hits and accumulating over 14,000 followers across all my social media sites.  This is an update of an article from 7 March 2018 when I passed the 500,000 mark - so that is a staggering half a million views in 15 months to double that tally.  All thanks to you! My key aims are international level awareness, advocacy, campaigning, and support for NET patients…
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NETwork with Ronny © – Community Newsletter JUNE 2017

NETwork with Ronny © – Community Newsletter JUNE 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
  Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is June 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: NETs in the UK National News.  Great publicity.  Featuring NET Patient Foundation.  Click here. Personalised PRRT is highlighted.  Click here. Everolimus and Sunitinib. In England, NICE approves Everolimus (Afinitor) and Sunitinib (Sutent). Read more by clicking here. Videos from LACNETS.  I've not watched them all yet due to holiday but they are always great!  Click here. PRRT.  News of a PRRT trial being set up for Inoperable Pheochromocytoma/ Paraganglioma. Not yet recruiting but read more here. Immunotherapy.  Merkel Cell Carcinoma is already benefiting from an FDA approved drug with another pending.  Check out…
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NETwork with Ronny © – Community Newsletter MAY 2017

NETwork with Ronny © – Community Newsletter MAY 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is April 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). This year, it's occurred to me that I've gone beyond just being known as a 'blog' and have transformed into something with a much wider focus within the NET Community and beyond. I've added a new section called NET News. This is a catch up of stuff I've accumulated over the past month but perhaps not yet posted or simply want to emphasise what I think is significant news about NETs or might impact or influence NETs  This section replaces 'Highlights' which will be renamed to 'NET Cancer Blog Activity' and cover my efforts to generate awareness and to help others. NET News The…
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Intra-Operative RadioTheraphy (IORT) for Neuroendocrine Cancer – new landmark treatment launch

Awareness, Technical NETs, Treatment
[caption id="attachment_6231" align="aligncenter" width="500"] IORT[/caption] New treatments seem to be appearing every month and that is good news for patients.  I have a personal connection to this one though.  In 2014, Chris and I walked along Hadrian's Wall, a 2,000-year-old World Heritage structure in Northern England.  This was part therapy for me but also part fund-raising to help pay for this new treatment which launches today in Southampton General Hospital (UK) which was recently awarded the coveted title of European NET Centre of Excellence (along with Bournemouth and Portsmouth Hospitals).  It is the first ever deployment of this type of treatment in UK and Chris and I were happy to shred the soles of our feet to support this worthy cause, particularly when the two guys behind the idea were my surgeon (Mr Neil…
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Neuroendocrine Cancer Surgery – Small Intestine NET, a patient experience (part 1)

Neuroendocrine Cancer Surgery – Small Intestine NET, a patient experience (part 1)

Survivorship, Treatment
8th - 26th November 2010 Memories of my 18 day stay in hospital from 8 - 26 Nov 2010, are not only reminding me of how important that particular treatment was to be, but also how surreal it felt at the time. Some of it is still a blur, particularly the early days where the morphine was in control.  For many NET patients, surgery can be a mainstay treatment, even for those with metastatic disease.  In fact, I now know from my own research that NETs is one of a small number of cancers for which surgical debulking can in many cases confer some survival advantage in a metastatic scenario. However, the nature of Neuroendocrine Cancer means that treatment and surveillance will need to continue for many patients. Prior to being…
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Beyond the Wall

General
One of the first tasks on return from Hadrian's Wall was to catch up with my favourite TV show Game of Thrones (GOT).  The latest story concerns Tyrion Lannister, the dwarf son of Lord Tywin Lannister. Tyrion is technically the heir to House Lannister, thus why his father Tywin is plotting to get rid of him using the murder of King Joffrey as the reason. There was even talk of him being banished for eternity to be the Lord of the Sworn Brothers of the 'Night's Watch' on the Wall to face the 'blue painted' barbarians not to mention the mysterious 'White Walkers'.  Can't wait until tonight's episode :-) The GOT writer used Hadrian's Wall as his inspiration for the Wall in the TV series.  This fictitious wall is a colossal fortification which stretches along…
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Hadrian’s Wall Day 5 – Pass the morphine!

Daily Blog
[caption id="attachment_1087" align="alignnone" width="640"] Me Resting![/caption] [caption id="attachment_1088" align="alignnone" width="480"] The M6![/caption]   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 was never far away from my hands! I could have done with it today.  Yesterday I felt…
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Hadrian’s Wall Day 4 – Welcome to Cumbria!

Daily Blog
      [caption id="attachment_1030" align="alignnone" width="640"] Lanercost Priory[/caption]   [caption id="attachment_1034" align="alignnone" width="480"] Milecastle 48 - Poltross Burn[/caption]   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 as we entered Cumbria.  There were some marvellous…
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Hadrian’s Wall Day 3 – Spectacular but wet!

Daily Blog
[caption id="attachment_976" align="alignnone" width="480"] Temple of a Roman Sun God (epic fail today)[/caption] [caption id="attachment_977" align="alignnone" width="480"] The lone sycamore[/caption] [caption id="attachment_978" align="alignnone" width="480"] Chris & Dave being daft[/caption]   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…
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Hadrian’s Wall Day 2 – The wall appears

Daily Blog
    [caption id="attachment_966" align="alignnone" width="480"] PLANETS on the Wall[/caption] [caption id="attachment_967" align="alignnone" width="480"] Wall design change[/caption] [caption id="attachment_968" align="alignnone" width="480"] From wall to house[/caption] 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.  Four months of training and not a blister between us! When we set off from our farmhouse (Ironsign), it was overcast…
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Hadrian’s Wall Day 1 – Sunny Newcastle

Hadrian’s Wall Day 1 – Sunny Newcastle

Daily Blog
First day under our belts but it wasn't easy.  We always knew it would be an odd walk with the first two thirds in urban environments. The first third of the route took us from Segedumun Fort, the official start/end of the wall walk in the east. There is evidence of Newcastle's previous and declining shipping industry all the way along the Tyne.  The second third took us through modern Newcastle including impressive views of the Sage and Baltic Arts Centres on the opposite bank and the iconic Tyne Bridge which we walked under.  Quite a lot of riverside flats on show, some with nice looking views. The final third takes you to the outskirts and out into the countryside.  We were able to see Heddon-on-the-Wall on top of a…
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Is there life on other Planets?

Daily Blog
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…
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Queen Mother of the Isle of Wight

Daily Blog
  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…
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