Letter from America

Letter from America

Awareness, Inspiration, Living with Neuroendocrine Cancer
I've always been one to keep an eye out for the postman (the postie as we say here). Even as a heavy user of computers, I still get excited about receiving 'paper' mail.  Other than birthday cards, I personally don't tend to see many handwritten letters nowadays. In today's internet connected world, handwritten letters are always exciting, always special. However, the one I received in the first week of February 2019 was extra special, it was postmarked from North Carolina USA. Now ….. for those around the same age as me, you might have been attracted by the article header and have remembered the famous radio show entitled "Letter from America".  This was a weekly fifteen minute speech radio series broadcast on BBC Radio 4 and across the world through…
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RonnyAllan.NET – Community Newsletter Covering November 2018

RonnyAllan.NET – Community Newsletter Covering November 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Summary for November 2018 NET News 1. I supported the annual NET Cancer Day event in my own style, contributing SIGNIFICANTLY to both Facebook and Twitter social media platforms.  My twitter accounts were the biggest contributors to the #LETsTalkAboutNETs and #NeuroendocrineCancer hashtags for several days straddling the 10th Nov and between this and my Facebook account, I accounted for a significant proportion of the data recently published by INCA.   I almost got to my 1 million 'reach' on twitter in ONE WEEK straddling NET Cancer Day (see below) - just a wee Scottish guy with a less common disease and a computer. Curiously not mentioned by INCA in their recent newsletter.  So I thought I'd mention it instead. Mind you, every day is NET Cancer Day on my social media…
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RonnyAllan.NET – Community Newsletter Covering October 2018

RonnyAllan.NET – Community Newsletter Covering October 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Summary for October 2018 NET News Several headlines covering the past month: 1. The annual NANETS symposium took place last month and I constructed an article of several important outputs.  One day I might make it there, been to ENETS twice.  Would love to attend UKINETS but they don't seem very 'patient' friendly. 2. I spoke alongside IPSEN Pharma SAS (Global HQ) at the annual Eye for Pharma Patient Summit. It was an honour and a privilege to stand in front of 200 people to tell my personal story plus my involvement in LivingWithNETs.com.  The audience was a mix of the Pharmaceutical industry, Healthcare industry and Patient Advocates from many different illnesses.  A fantastic and real awareness opportunity which is part of my promise to take NET awareness to new…
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RonnyAllan.NET – Community Newsletter Covering September 2018

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…
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RonnyAllan.NET – Community Newsletter Covering August 2018

RonnyAllan.NET – Community Newsletter Covering August 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
[caption id="attachment_13604" align="aligncenter" width="959"] RIP Aretha Franklin - Neuroendocrine Cancer[/caption] Summary for August 2018 NET News Several headlines covering the past month: 1. The death of Aretha Franklin was a shock to her many fans around the world, including myself. I had no idea she was a Neuroendocrine Cancer patient. However, it would appear her death is being assigned as 'Pancreatic Cancer' mainly due to a rather clumsy statement from her physician. Despite the fact that her death certificate specifically confirms Neuroendocrine Cancer, we will be fighting a hard battle for years to come. The same thing happened with Steve Jobs, although I suspect we have now won that battle despite frequently news articles saying Pancreatic Cancer. Read about Aretha Franklin here and check out the link to her death…
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RonnyAllan.NET – Community Newsletter JULY 2018

RonnyAllan.NET – Community Newsletter JULY 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Summary for July Personal News  Another unusual month, after a bizarre June.  The chest infection has gone but still awaiting results of an x-ray to confirm.  July was supposed to be partly holiday but that was cancelled due to illness.  The chest infection caused a 4kg weight loss and only half of this has returned to date.  I also got the results of my first ever Ga68 PET Scan and this resulted in an article below. No longer a boring stable patient but nothing that needs doing imminently. Many thanks to all the messages which continue to arrive both public and privately, I'm most grateful.  I received my 100th Lanreotide earlier in the month and I'm still here following my 8 year 'cancerversary' on 26 July 2018.  Many of you…
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RonnyAllan.NET – Community Newsletter JUNE 2018

RonnyAllan.NET – Community Newsletter JUNE 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Summary for June For the first time in 3 years, I didn't write any new articles in a single month (other than the monthly newsletter).  This was due to a prolonged chest infection from which I'm still recovering.  I'm so much better now (thankfully) but I suspect recovery has been slightly hampered by the recent UK heatwave. I managed a relaxing short break on the south coast of England to make up for my cancelled 3 week road trip to Scotland  My weight remains below 10 stone, the lightest I have been for over 30 years. For me, weight loss is a red flag, although this occurrence wasn't sufficient for me to start waving one.  I will get the results of my Ga68 PET scan on 11 July (please note…
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RonnyAllan.NET – Community Newsletter May 2018

RonnyAllan.NET – Community Newsletter May 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
  Summary for May Different type of intro to my newsletter as it's late due to unexpected illness.  In some ways, what happened in May is possibly connected.  I had quite a bit of work to do for a 'Patients Included' event in May in Berlin.  I managed to meet the deadlines and admit I was slightly out of my comfort zone. That said, it was a success and I managed an amazing amount of new contacts and awareness for Neuroendocrine Cancer.  I arrived back exhausted and turned my attention to another two things - a patient presentation to the inaugural UK Dietitian Group study day followed by a holiday to Wales. The study day was done on the way to my holiday, was very successful and I enjoyed it. …
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RonnyAllan.NET – Community Newsletter April 2018

RonnyAllan.NET – Community Newsletter April 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Headlines 1.  Patients Included.  I'm a big believer that patients should be included in all aspects of healthcare and I can very much relate to any initiative that promotes this. I'm therefore pleased to have been listed as a Patients Included accredited site providing further  EXTERNAL awareness opportunities - read about this here.  2. I've accepted an appointment to the Strategic Advisory Board on MultiMed Inc, the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) - It also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here. 3. My blog site is 4 years old.  When I set my blog…
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RonnyAllan.NET – Community Newsletter March 2018

RonnyAllan.NET – Community Newsletter March 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs
Headline for the period of March 2018 is reaching a milestone of half a million blog views.  Yay ...... Read more here. Amazing that I clicked over the 500,000 mark in a taxi going from Barcelona airport to my hotel for ENETS 2018 where I'd been sponsored by INCA.  Fortunately I had prepared the post earlier and was able to spread the news in a few clicks.  I picked up some great information at this conference which I'm feeding into my articles so you get the best and latest thinking.  Here's a couple of pictures of me with famous NET specialists.  [caption id="attachment_12597" align="aligncenter" width="300"] Dr James Yao[/caption] [caption id="attachment_12598" align="aligncenter" width="300"] Dr Jonathan Strosberg[/caption] I caught this news in my social media NET A website I helped design with a…
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RonnyAllan.NET – Community Newsletter February 2018

RonnyAllan.NET – Community Newsletter February 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs
Another great start to the year in both NETs in the news and my social media activity. It's been really cold where I am though! I'm so busy with personal contacts, I decided to set up a chat room so that other people can help me answer some really difficult questions!  This 'chat rom' is not designed to run like a traditional Facebook forum, it's a place to make people feel safe and to discuss without the usual distractions and dramas that people often encounter. And .... it's about learning.  I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people (I already have a few of the latter). It's also a place where I will bring in expertise to chat about various…
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Things to do today

Things to do today

Inspiration, Living with Neuroendocrine Cancer, Survivorship
When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt. I've been living with my condition for almost 8 years and I'm a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term! Of course, sometimes you have little choice if you're ill from your condition or something routine. So now and then, I just breathe in and breathe out (then repeat). It's very enjoyable! Take a break if you need one. Thanks for reading Ronny…
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RonnyAllan.NET – Community Newsletter January 2018

RonnyAllan.NET – Community Newsletter January 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs
A great start to the year in both NETs in the news and my social media activity.  Of course the headline is the US FDA approval of Lutathera (Lu-177) - i.e. PRRT I caught this news in my social media NET FDA finally approves PRRT in USA. Long awaited and has caused much excitement on all forms of social media. I'm very pleased for my USA friends but we mustn't forget it's also required in so many other places.  Help me populate locations in my live article on  PRRT click here. NET Epidemiology continues to be discussed and (yet) another well known NET expert confirms my 2 year old article saying that the  disease can no longer be considered rare. I suspect more dominoes will follow. Click here for the evidence. MIDATECH Pharma…
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NETwork with Ronny © – Community Newsletter DECEMBER 2017

NETwork with Ronny © – Community Newsletter DECEMBER 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
6 HAPPY NEW YEAR and welcome to Ronny Allan's Community newsletter for December 2017. A quieter month due to the holiday season in the latter half.  I was generally quieter in the first half too, maybe that's a good thing? Nonetheless, I still managed to accumulate nearly 20,000 hits this month. At the end of 2017, I've been reflecting on the amazing support from you guys.  I'm a bit 'discombobulated' but also proud to see that I've had an amazing quarter of a million hits on my blog site in 2017 alone, double the 2016 figure.  It seems almost impossible to carry that momentum on in 2018 but I'll give it a go!  Check out my top 6 posts of 2017 by clicking here. AND ..... I'm now officially ronnyallan.NET…
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NETwork with Ronny © – Community Newsletter NOVEMBER 2017

NETwork with Ronny © – Community Newsletter NOVEMBER 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Welcome to Ronny Allan's Community newsletter for November 2017. A very strong beginning of the month due to massive support for my Halloween themed but very serious and hard-hitting post "Neuroendocrine Tumors - no treats, just tricks". If you've not seen it or commented on it, check it out here on the Facebook site (currently 724 shares). I suspect the number of shares will never be beaten (there were 652 within 36 hours) and as far as I know perhaps this is now the most shared NET awareness post ever on social media. The support for this single post was so phenomenal; it actually eclipsed my entire NET Cancer Day effort on 10 Nov! I am so grateful to those who made that happen ♥ That said, I was actually pretty…
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NETwork with Ronny © – Community Newsletter OCTOBER 2017

NETwork with Ronny © – Community Newsletter OCTOBER 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Hi NETworkers! Welcome to Ronny Allan's Community newsletter for October 2017.  A very strong end of the month due to massive support for my Halloween themed but very serious and hard-hitting post "Neuroendocrine Tumors - no treats, just tricks". If you've not seen it or commented on it, check it out here on the Facebook site.  I suspect the number of shares will never be beaten (652 in 36 hours).  31 Oct 2017 is now the biggest number of views on any one day, breaking the previous record set in Jan 2017.  It also made October 2017 the highest monthly views ever.  I am so grateful to those who made that happen ♥ What's in the NET News The following news items may be of interest:   The huge (but expected) news…
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Cancer Isn’t All About Me

Cancer Isn’t All About Me

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
[caption id="attachment_11078" align="alignleft" width="150"] As featured by Cure Magazine[/caption] [caption id="attachment_4318" align="aligncenter" width="500"] It's about others too[/caption] Since my diagnosis of incurable and metastatic neuroendocrine cancer in 2010, it's really all been about me. I didn’t see the trauma coming, and my family has supported me throughout every single step. I really don’t want to be the focus of attention as that mantle was normally evenly distributed. However, there’s nothing like a cancer diagnosis to put you into the spotlight. Facing an uncertain future with regular scans, injections, treatment, pills, examinations and blood tests has made me the center of attention, whether I like it or not. The focus is on me because these things are necessary to keep me alive for as long as possible and also because I…
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NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is September 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:   The European Commission (EC) approved Lu-177 Lutathera (PRRT) on 28 Sep.  This is the first time the drug has ever been approved, despite being in use for  over 10 years.  In USA, the FDA gave a date of 28 Jan 2018 for its decision to approve or not.  Read more here.   The European Commission approved the use of XERMELO (telotristat ethyl) for use in Carcinoid Syndrome diarrhea not adequately controlled by somatostatin analogues. Read more here.   The US FDA approved an add-on indication for Lanreotide (Somatuline) for treatment of carcinoid syndrome, adding…
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NETwork with Ronny © – Community Newsletter AUGUST 2017

NETwork with Ronny © – Community Newsletter AUGUST 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
[caption id="attachment_10710" align="aligncenter" width="500"] background scene from my Instagram account - to see more check out the newsletter. Photo credit to Nick Lucas[/caption] Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is August 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: PRRT takes a step forward to being formally approved in USA. FDA acknowledges receipt of revised application for approval.  Click here. However, in UK, there is a threat that PRRT won't be approved despite a positive recommendation by the scientific committee of the European Medicines Agency (EMA).  Advanced Accelerator Applications (AAA), the manufacturers of Lu-177 Lutathera for use on PRRT, has had to respond to the UK's drug approver NICE's negative recommendation. …
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NETwork with Ronny © – Community Newsletter JULY 2017

NETwork with Ronny © – Community Newsletter JULY 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
  Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is July 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!).  July 26th was the 'Cancerversary' of my diagnosis - I'm still here after 7 years and I'm apparently a veritable newbie!  There's some great comments on my 'I'm Still Here' post - check them out ... 'click here' NET News The following news items may be of interest: Telotristat Ethyl (Xermelo) takes a step forward to being approved in Europe. Click here. PRRT takes a step forward to being approved in USA.  Click here. Ipsen launches the German version of 'Living with NETs' website.  Click here. What's happening on my Blog Site?   As per above, a quiet month.  Due to the vagaries of…
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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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Living with Neuroendocrine Cancer – 8 tips for conquering fear

Living with Neuroendocrine Cancer – 8 tips for conquering fear

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
  Opinion: Before I was diagnosed with cancer, my health was in reasonable condition. I had minor irritants that seemed to come back now and then, nothing that was going to kill me. So I just put up with most of it and time was frequently a good healer. Occasionally, I would use medicine to speed up the healing or ask a doctor for advice. Even leading up to my diagnosis, this was my strategy despite some strange things going on.  Luckily for me, the 'system' picked up something suspicious and I am where I am today. It's amazing to think a cancer can grow inside you for years causing a lot of damage but without a grand announcement. Stabilised Following diagnosis, I got quite a lot of attention in…
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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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NETwork with Ronny © – Newsletter April 2017

NETwork with Ronny © – Newsletter April 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
Hi NETworkers! Welcome to my sixth 'Community' newsletter. This is April 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). Highlights There are two main highlights for April which stood out for me: The publication of my WEGO Health Award PODCAST.  This was a radio interview prior to the announcement that I had won the WEGO 'Best in Show Community' award.  It was designed around a red carpet scenario where the nominees are entering the award ceremony (everything in the virtual world of course).  If you missed it, you can listen to it by clicking here. The announcement of new USA database figures for incidence and prevalence of NETs. This confirms it is now mathematically impossible for NETs not to be a rare disease in…
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Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
OPINION. There's a lot of inaccurate and out of date information out there. Some is just a lack of understanding, often with a combination of patient forum myth spreading. Some can only be described as propaganda. Myth 1: All Neuroendocrine Tumours are benign Not true. By any scientific definition, the word 'tumour' means 'an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumours may be benign (not cancerous), or malignant (cancerous)'. Sure, some NETs will be benign. However, The World Health Organisation (WHO) 2010 classification for digestive system is based on the concept that all NETs have malignant potential, and has therefore abandoned the division into benign and malignant NETs and tumours of uncertain malignant potential. This has…
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Poker Face or Cancer Card?

Poker Face or Cancer Card?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
[caption id="attachment_11078" align="alignleft" width="150"] As featured by Cure Magazine[/caption]   Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time, and most did not stop me getting on with whatever needed doing. I served in the military from age 16 until 45 – a long time! On only two occasions during that 29-year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should have seen the other guy!) and aged 39 after falling off a vehicle (in my defense it was really dark). Illness wasn't really something I thought much about and for minor things, I would just "soldier on.” So, from an early age,…
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25 Life Lessons From a Two-Time Cancer Survivor

25 Life Lessons From a Two-Time Cancer Survivor

Inspiration, Survivorship
Sometimes, a blog post comes along and it just resonates!  I got chatting with the author who has given me permission to post it here.  Shari Berman is a two-time cancer survivor. She was diagnosed with Hodgkin’s Lymphoma at age 25, days after returning from her honeymoon and a second time with breast cancer 8 years later. I posted her full CV below. Her post "25 Life Lessons From a Two-Time Cancer Survivor" is a fantastic summary of a positive approach to life, despite a cancer diagnosis (or in Shari's case, two). I've seen some similar quotes before but Shari has collated them into one very powerful list.  I'm not suggesting they all apply to everyone but perhaps even a 'pick n mix' approach would be useful.  For example, I couldn't do number 8…
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Keep your light burning

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
I recently met a colleague who I hadn't seen for 30 years. He was more than just a colleague, he was once my 'Commanding Officer'. He had been made aware of my illness but after asking how I was, he was content with my short explanation "I'm not dead yet". The great thing about soldiery is that you can pick up where you left off 30 years ago as if it was only yesterday and 'bravado' is not only allowed, it's expected! A week later, I received a very nice Christmas card with a message which included "...... the old light is still burning brightly".  It was a metaphor but something I needed to hear. Neuroendocrine Cancer can damage or take our body parts, cause us pain and discomfort, disrupt our lives through constant treatment and surveillance, giving…
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“You must be doing OK, you’ve not had chemotherapy”

“You must be doing OK, you’ve not had chemotherapy”

Awareness, Living with Neuroendocrine Cancer, Survivorship, Technical NETs, Treatment
If there's a word which is synonymous with cancer, it's chemotherapy.  It's what most people have in their mind when they are talking to a cancer patient...... 'have you had chemotherapy' or 'when do you start chemotherapy'. I was nonchalantly asked by a friend some time ago 'how did you get on with chemotherapy' - he was surprised to hear I hadn't had it despite my widespread disease.  Cue - lengthy explanation!  I wasn't annoyed by the question, I just think people automatically assume every cancer patient has to undergo some form of systemic chemotherapy.  If you read any newspaper article about cancer, they do nothing to dispel that myth, as many articles contain a story about a cancer patient with no hair. Sure, chemotherapy is not the nicest treatment to receive and it does have pretty…
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Living with NETs – a patients included award winning site

Living with NETs – a patients included award winning site

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
It's no secret that I and other patients (see picture below) have been helping Ipsen Group and their website consultants (Kanga Health) with a new site designed to support and help all Neuroendocrine Tumour patients.  It was subsequently launched on NET Cancer Day 2016 and is very aptly named 'Living with NETs'.  Very pleased to see all this hard work recognised at the 2018 Eye for Pharma awards for the Most Valuable Patient Initiative.  And, this is great awareness for Neuroendocrine Cancer at a major pharma event. I'm also delighted to be speaking alongside Ipsen as the EyeforPharma Patients Summit event in London on Oct 16th 2018. I'm quite excited about this new initiative from Ipsen Group (the manufacturers of Somatuline (Lanreotide)) and not only because I feature on the site…
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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 abundance and they will normally be patients diagnosed with the big 4 cancers. This is not surprising as these tend to affect more people.  However, the ratio of NET Cancer…
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WEGO Health Patient Leader Ronny Allan – Living with Neuroendocrine Cancer

WEGO Health Patient Leader Ronny Allan – Living with Neuroendocrine Cancer

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
This is what taking part in the WEGO Awards means to me Background In 2016, I was nominated for 6 awards, got to the final for 2 (Blog and Community) and then won the Best in Show Community award. In 2017, I was nominated for 3 and got to the final in all 3 - unfortunately I did not win any of them due to fierce competition. Here we are in 2018 and I've been nominated for 5 awards and made to the final in the Blog category.  This is not only another great opportunity for me as a blogger and health activist but also a further opportunity for Neuroendocrine Cancer awareness. The winners of the 2018 awards will be announced over the period 26-28 Sep 2018. Check out WEGO's…
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Stop talking about it, just go do it!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
[caption id="attachment_6724" align="aligncenter" width="2896"] Medicine![/caption] "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" campaign which fortunately and timely sparked us into gear. As a patient with incurable cancer, life can be tough on the body and mind. However,…
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Exercise and Cancer: Forward is Forward

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy
[caption id="attachment_6521" align="aligncenter" width="500"] For Cancer patients, it’s not just about how fast, how high, how heavy, how much ............... it’s about DIRECTION.[/caption] One of the very first blog posts I wrote was about exercise. Basically I said it was medicine.  I have not changed that view, I really believe it.  All cancer patients should attempt to keep active and this is even more important if you are being treated for long-term cancer. Why? Because keeping active will not only help your physical condition but it will also help you cope mentally. There are numerous pieces of research which confirm cancer patients are at risk of succumbing to depression and anxiety in addition to issues with their physical condition. Research also indicates that exercise can help. In my blog "Exercise is Medicine", I discussed…
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What you don’t know might kill you

What you don’t know might kill you

Awareness, Treatment
[caption id="attachment_6337" align="aligncenter" width="700"] In Barbados Heaven.  I didn't know I had metastatic cancer but was about to find out on return to UK[/caption] A month before I was diagnosed in July 2010, Chris and I flew off to Barbados on holiday.  Both of us were looking forward to a nice break after a hectic start to 2010.  When we got back, we both agreed it was the most relaxing holiday we had ever been on. However, whilst I was lying on a sunbed soaking up the Caribbean sun drinking 'pina coladas', Neuroendocrine Tumours were growing in my small intestine, spreading into my mesenteric lymph nodes, into my liver, into my left armpit and into my left clavicle area.  The excess serotonin being released was causing a dense fibrotic retro-peritoneal reaction (desmoplasia)…
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Let’s talk about living with NETs

Let’s talk about living with NETs

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
[caption id="attachment_4893" align="aligncenter" width="500"] Graphic courtesy of Ellie McDowell[/caption] There's a frequently asked question on certain forums along the lines of "how will I die of my Neuroendocrine Cancer?". Personally, I find it slightly unsettling, although I can understand why certain people might ask. I accept it as a question but I believe there are times and places for it and that a public forum is not the place to have it. The vast majority of people do not go to a forum to find out how they might die.  I can see a list of search terms for hits on my blog site (I don't know who searched just what was searched). Would you believe this also appears from time to time?  I just hope they found this post! I don't tend…
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Living with Cancer – Turning points

Living with Cancer – Turning points

Awareness, Inspiration, Living with Neuroendocrine Cancer
[caption id="attachment_5953" align="alignnone" width="480"] Day 4 of 6 - entering Cumbria from Northumbria[/caption] In 2014, Chris and I completed the 84-mile route of 2000 year old World Heritage site of 'Hadrian's Wall' in Northern England. Some people saw this is a charity walk and a chance to make some money for a good cause. It was. However, it was MUCH MORE than that. Much much more.   A few months before this trek, I had come to a crossroads and I was unsure which direction to go.  That anguish and a thousand other things were contributing to a degradation of my overall health, it felt threatening. I was not that long out of the main treatments for my metastatic Neuroendocrine Cancer and it was still a delicate period as I waited…
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I Can

I Can

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Opinion.  Most people with an incurable Cancer will go through both good and bad periods.  I quite liked a quote by a fellow patient who described that as the 'ebb and flow' of living with cancer and said the flow would always return at some point.  I also liked a quote from a fellow blogger whose blog catchphrase is "Having a bad day shouldn't mean having a bad life". When I wrote my blog "Living with Neuroendocrine Cancer - it takes guts", that wasn't me being one of those trendy bloggers saying the sort of things people want to hear. Nor was my article "Neuroendocrine Cancer – is normally slow growing BUT ….." an attempt to invoke some sort of 'pity party'. Neither of those things are my style. Despite the metaphoric angle to the post…
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100,000 blog views – thank you!

Living with Neuroendocrine Cancer
NET Cancer Blog has just recorded 100,000 blog views. I'm extremely excited to have reached this major milestone. However, I'm also really grateful to my followers on this blog site, on Facebook, on Pinterest, on Google+ and on twitter for supporting me through thick and thin. Your engagement with my blog whether a simple 'like', a share, a comment, a pin, a tweet, a retweet, an email or via a private message; is not only extremely motivating but also very humbling. Thank you so much for giving NET Cancer 100,000 pokes in the eye! Onwards and upwards to 200,000! Ronny I’m also active on Facebook.  Like my page for even more news. Disclaimer My Diagnosis and Treatment History Most Popular Posts
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I’m only as good as my last scan

I’m only as good as my last scan

Living with Neuroendocrine Cancer, Survivorship
[caption id="attachment_5240" align="aligncenter" width="600"] Scanning - a piece of cake![/caption] "I'm only as good as my last scan". I received this comment last week in response to one of my posts and I thought it was a very pragmatic thing for someone to say. A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability or regression is a scan. Markers such as (say) Chromogranin A (CgA) or 5HIAA are clearly useful but in an ongoing surveillance scenario, they alone would not be used as a firm declaration of progression, stability or regression. Every picture tells a story and a scan is normally the confirmation required whether it's a CT, MRI or PET (etc). IF YOU CAN SEE…
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Patient power – use it!

Inspiration, Patient Advocacy
[caption id="attachment_4931" align="alignleft" width="300"] Team Effort[/caption] 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 theme indicating certain cancer patients might need to know more about their disease than would be considered normal and that can influence the nature of the…
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Sometimes you just gotta climb that hill!

Sometimes you just gotta climb that hill!

Inspiration, Living with Neuroendocrine Cancer
It was wet, windy and very cold and that was at the bottom of the hill I'm looking up at. It wasn't a terribly big hill but I knew it would need considerable effort and perhaps some temporary pain. Whilst the rain splashed onto our jackets and the wind howled, Chris and I looked at each other and we almost simultaneously said "do we really want to go up that in this weather?"  Oh yes ....... no pain, no gain! So we went up the hill and it hurt. Up there, it was wetter, windier and colder! However, the 'euphoric high' was worth it.  It was like medicine healing the body and mind. The 'euphoric high' is kicking in! Whatever your 'hill' is, two of the common elements required to 'climb it' are motivation and…
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Neuroendocrine Cancer – Incurable is not untreatable

Neuroendocrine Cancer – Incurable is not untreatable

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
  OPINION. When I was being officially told I had an advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have".  The Oncologist said " ... perhaps just months".  That must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able to live for a lot longer".  Fortunately, my wife Chris heard it all and I was refocused.  "OK Doc - let's go" I said.  Always take someone with you to take notes at important meetings with Oncologists! I continue to see…
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Alcohol – the NET Effect

Alcohol – the NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer
Opinion. Social Media is currently full of 'Dry January' articles and of course many charities will benefit as people will be motivated if they are abstaining from alcohol for a good cause. Nothing wrong with that and no doubt some individuals will also see it as a way to cut down or at least lessen the effects of a very wet December! I've never been a big drinker but I do like the odd beer now and then.  When I was diagnosed with metastatic Neuroendocrine Tumours (NETs), I hadn't really thought much about how this might affect my body. It wasn't until I studied a bit more about my disease and the consequences of my treatment, that I decided I would cut right down.  This turned out to be a pretty drastic cut as I can count the…
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Neuroendocrine Cancer Survivor Wilko Johnson – from dying to living.  Rock and Roll!

Neuroendocrine Cancer Survivor Wilko Johnson – from dying to living. Rock and Roll!

Awareness, Inspiration, Living with Neuroendocrine Cancer
  [caption id="attachment_14806" align="aligncenter" width="785"] Wilko Johnson performing at The Royal Albert Hall, London on 26th September 2017[/caption] I recently blogged about a well-known BBC political reporter who has a Neuroendocrine Cancer with a Lung Primary.  However, in the usual media 'double speak' which can sometimes pervade the coverage of such events, he is said to have Lung Cancer.  As I said in that article, sometimes with Neuroendocrine Cancer - the devil is in the detail and you just need to dig to find it. Annoying, we shouldn't need to dig as he doesn't have Lung Cancer.  I wrote about this anatomical issue here.  This is exactly what happened to Steve Jobs and Aretha Franklin. No sooner had I published the Nick Robinson article, I was alerted to the broadcasting of…
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My Neuroendocrine Cancer Surgery – a patient experience (part 2)

My Neuroendocrine Cancer Surgery – a patient experience (part 2)

Living with Neuroendocrine Cancer, Treatment
The surgery on 9 Nov 2010 had lasted 9 hours but according to my surgeon Mr Neil Pearce (on the left on the picture below), I tolerated it well.  My first week was quite tough and I outlined how this went in my blog 'patient experience' part 1.  If you've not read it yet, please click on this link before reading any further. By this stage of my stay, I'm now minus most of the temporary tubes attached to my body, a good sign of recovery. The one which seemed to offer me the greatest freedom when removed, was the urine catheter. It doubled my speed down the hospital corridor during my daily exercises.  It was also so much easier to get to the toilet, a much frequented area at the time :-) Surprisingly, the…
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My Neuroendocrine Cancer Surgery – patient experience (part 1)

My Neuroendocrine Cancer Surgery – 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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Neuroendocrine Cancer – the devil is in the detail

General
[caption id="attachment_4343" align="aligncenter" width="500"] Nick Robinson BBC[/caption] Nick Robinson, well-known and ex-BBC Political Editor starts his new job today (16 Nov 15) on BBC Radio 4. He was until earlier this year, the most recognised political reporter face on UK TV, frequently stood outside 10 Downing St reporting on anything politics and at any time of the day. Like a lot of people, Nick's life changed when he was diagnosed with Cancer in Feb 2015. A self-confessed workaholic, he is now hoping to live a more balanced life after surviving lung cancer according to an article in the Sunday Times this weekend. He assumes the post vacated by James Naughtie, an extremely hard act to follow - a man who would frequently sink his teeth into a politician's leg and not let…
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Your Money or Your Life

Your Money or Your Life

Inspiration, Survivorship, Treatment
As I have a 2 year old post about Danielle, I wanted to preface it with this message. It is with great sadness that I let you know Danielle Tindle passed away at the end of August 2017 after a prolonged battle with Neuroendocrine Carcinoma. She had been fighting cancer in one form or another for 12 years and became passionate in campaigning for more attention for young cancer patients.  I've been following her story for almost 2 years and she has really inspired me.  The title of this article is based on the title of a TV programme about her and her campaign to gain access to new drugs.  I had chatted with Danielle online about some of the story below and I hope I've interpreted it correctly.   RIP…
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Let’s attack Cancer metaphors

Let’s attack Cancer metaphors

General
In the past 24 months, I've read dozens of articles on the subject of cancer metaphors and in particular their use in describing cancer experiences with the words 'fight', 'battle' and other 'military' sounding terms.  The authors say that perhaps this is not the best language to use.  One author used the term 'violence' to describe these type of metaphors.  A ridiculous misrepresentation of the metaphor in my opinion. Let me put my cards right on the table as I would hate to twist the meaning of words or the inference of any metaphors I might use.  I don't like Cancer - it attacked me, it attacked my family, it attacked others I know, it has killed people I know....... it has killed millions of people and changed many lives. I'm 'fighting' Cancer.  I'm in a 'battle' with Cancer. But I don't mean all that…
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Screw that diagnosis and get on with it!

General
  [caption id="attachment_3902" align="alignleft" width="300"] Screw that diagnosis and get on with it![/caption] Every now and then I see a positive story during my travels around the internet.  When I saw this one from K**** in Pennsylvania, I had to share.  If you're feeling a little bit down and need cheering up, dig out this blog and take a read :-) K**** wrote: "I began my Carcinoid journey about 7 years ago, newly married to a wonderful man and his daughter at the age of 43.  I was also newly retired (from CPA and also Large Animal/Equine Surgical Veterinary Assistant) and was looking forward to a nice, peaceful, fun, loooong life. But, things get in the way and can get bumpy - cancer, being one of them (and a now, 16yo…
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I’m still here

I’m still here

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
NINE years ago. I was diagnosed with metastatic Neuroendocrine Cancer - 26th July 2010.  Until I arrived at my 5th anniversary, I hadn't thought much about how (or if) I should mark these occasions.  I never thought I would dwell on such things as 'Cancerversaries' but I now totally get why many patients and survivors do. There are various types of 'Cancerversary' that for some, could trigger a mix or range of emotions including gratitude, relief and fear of cancer recurrence or growth. These milestones could be the date of a cancer diagnosis, the end of a particular type of treatment (anniversary of surgery etc) or a period since no signs or symptoms of cancer were reported. Everybody will most likely handle it their own way - and that's perfectly understandable. The…
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Sorry, I’m not in service

Sorry, I’m not in service

General
Featured by Macmillan Cancer - check out this link. Featured by Cancer Knowledge Network - check out this link. It's good to be busy, it can take your mind off stuff you don't really want to think about. That was my tactic after being diagnosed with incurable Neuroendocrine Cancer.  I just kept working and working and was still sending work emails and making telephone calls on the day I was being admitted to hospital for major surgery. After all, how could they possibly function without me? Although I was banned from work after the surgery, I still dropped an email to let them know I was doing cartwheels down the hospital corridor. They expected nothing less. I guess the image of 'invincibility' was important to me at that time.  It was part of my personal…
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I may be stable but I still need support and surveillance

I may be stable but I still need support and surveillance

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
With incurable but treatable cancers such as metastatic Neuroendocrine Cancer, 'Stable' is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. The long road may be considered an advantage by some given that with very aggressive cancers, incurable can frequently mean terminal. The surveillance must continue in case of a recurrence. It's important to understand that 'Stable' simply means the disease is "under control" with tests and scans showing the cancer hasn't changed over time. One of the disadvantages of 'incurable but treatable' is that Quality of Life (QoL) can in many cases be compromised due to the consequences of cancer and /or treatment. However, if specialist treatment, surveillance and support are all in…
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Please flush after use!

Please flush after use!

Awareness, Diet and Nutrition, Humour, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
In the past couple of years, I've read so many stories about the quite natural act of using a toilet (.....some more repeatable than others).  I think if there was a 'Bachelor of Science degree in Toiletry', I might pass with First Class Honours. I jest clearly but it's strange that such a routine activity for most can actually become quite scientific in the world of Neuroendocrine Cancer and other ailments which might be described in some scenarios as invisible illnesses. I also found myself smiling at the fact that flushing is connected with the toilet and a type of red warm feeling in the upper torso - the two main symptoms of the Carcinoid Syndrome associated with the most common type of Neuroendocrine Cancer.  "Please flush after use" - erm...yes sure but actually -…
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Chasing normality

Living with Neuroendocrine Cancer, Survivorship, Treatment
Cancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away. The cancer may be 'controlled' with treatment, meaning it might seem to go away or stay the same, and it doesn’t grow or spread as long as you are getting appropriate treatment. Sometimes the treatment shrinks the cancer, but the cancer is still there – it doesn’t go away and stay away – it’s not cured.  More people are living with cancer than ever before and the ratio is on the increase thanks to better treatments. For the first 18 months following my diagnosis, I underwent a significant number of treatments and tests.  As I continue living with my cancer, that tempo doesn’t…
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The C Word

General
'The C Word' or 'The Big C' - the subject which must not be discussed.  Or is this now an out of date phrase?  I read a useful article a month ago where the author debated where we might be if, 50 years ago, we were as open about cancer as we are now (there, I said the word).  Nowadays you cannot turn a page in a newspaper without seeing a story of sadness, inspiration or medical science progress. Certainly the latter has played a huge part in reducing cancer mortality rates and sending more people into remission. We now have much better tools to discover and treat cancer. Moreover, because we are increasingly open about cancer, there is more awareness. According to Cancer Research UK, as we all live longer, more than one…
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No Fear

No Fear

Inspiration, Survivorship
It's that time again, every 6 months I need some checks. I've done the specialist blood test (Chromogranin A - CgA) and the 24 hour urine (5HIAA) and am waiting on my CT scan appointment. It's also time for my annual Echocardiogram. I then see my Consultant and he delivers the news.  Happy days :-) I positively look forward to my tests and I cannot wait to get into that scanner! 'Scanxiety' isn't in my dictionary.  Why? Because testing is one thing that's going to keep me alive for as long as possible.  If I don't get regularly tested, then one day I might just 'keel over' because something wasn't spotted early enough.  Even in the event of 'not so good news', I still see that as a positive because it…
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Things are not always how they seem

Things are not always how they seem

Awareness, Living with Neuroendocrine Cancer, Survivorship
[caption id="attachment_2784" align="aligncenter" width="500"] Things are not always how they seem[/caption] In 2014, Chris and I walked 84 miles along Hadrian's Wall on the English/Scottish border.  It was a fantastic experience and we met some really interesting people on our 6 day journey.  On the 4th night, I encountered a lady who was pretty rude. I wanted to say something but I was with Chris and other people were also present, so I kept quiet.  I later discovered this lady was autistic and I was therefore relieved I hadn't responded to her initial rudeness. However, It got me thinking about the number of times I had perhaps been too hasty to judge people in the past without thinking about what's going on inside their heads and bodies. Visible Illness can have awareness benefits Conversely in 2018, I was absolutely…
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Colonoscopy Comedy

Colonoscopy Comedy

Humour, Living with Neuroendocrine Cancer
  [caption id="attachment_2643" align="aligncenter" width="500"] No more prep please![/caption] Last year I wrote a series of blogs on the 'coping' side of cancer, one of which was about still being able to have a laugh. This was my way of saying no matter how tough life is, you need to stay positive and maintain your sense of humour. When I think back to some of the treatments I've had, I sometimes have a little laugh even although I wasn't laughing at the time!  My favourite 'treatment laugh' is the 'suppository story' which occurred in hospital shortly after my first major surgery - it wasn't funny at the time but I smile when I think back to it. On a similar subject, I had a colonoscopy around 21 months prior to my actual NET Cancer…
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Turning a negative into a postive

General
[caption id="attachment_2625" align="alignleft" width="400"] Lung Cancer Breathalyser[/caption] Interesting piece in the news today and there's an amazing story behind it.  The "Lung Cancer Breathalyser" is not a new technology but following the death of his wife from advanced colon cancer, inventor Billy Boyle has produced something good enough to have been accepted on a trial basis by the NHS. If successful, it has the potential to save thousands of lives. Lung Cancer is a big killer and the survival rate at Stage 4 is around 5%. Let's hope this invention works. When I was reading the article, I immediately recognised his wife as a blogger I was following and who died on Christmas day after fighting advanced colon cancer for 2 years.  Her final and penultimate blogs are very inspiring and worth reading. Her…
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The Mother of all Surgeries

The Mother of all Surgeries

Treatment
[caption id="attachment_2338" align="aligncenter" width="500"] Surgery[/caption] My plan for this week's blog was to continue with a surgery theme using the story of a lady who had what was described as the "Mother of all Surgeries" after being late diagnosed with a very rare and advanced type of appendiceal cancer. With NETs, surgery is a topical subject as not everyone will be able to have it and some might not even need it. Check out my blog "to cut or not to cut". I suggested in a previous blog that 'Surgery is a gift that keeps on giving' and that is probably true for many cancer survivors. However, I then added that NETs were one of a small number of tumours for which surgical debulking can provide some survival advantage for those with metastatic and incurable disease. In my own case, I've…
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End of the year but not end of the mission

General
[caption id="attachment_2374" align="aligncenter" width="600"] Ronny & Chris Allan - festive sweaters :-)[/caption] Hope you all had a nice festive break?  Chris and I had 3 separate dinners making sure we made the most of our extended family base.  We decided to join in the Christmas jumper fashion statement which seems to be vogue this year - thus the picture!  At least we got to wear them 3 times! Now that busy period is over, I've had the chance to reflect on the last 8 months of blogging and look forward to my plans for 2015. I created this blog site on 29 Apr 2014 mainly to document an 84 mile charity hike across Hadrian's Wall - a World Heritage site in the North of England near the border with Scotland.  I was just a 'learner'…
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A Commitment to Fight Cancer

General
[caption id="attachment_1992" align="alignnone" width="640"] Steve Davis and the Author[/caption] I was a spectator at the Bournemouth marathon on Sunday 5 Oct 2014.  I was there to shout for my old army friend, Steve Davis, who was running 26.2 miles for PLANETS Charity.  When Steve found out I was living with Neuroendocrine Cancer, he immediately volunteered his services to help raise funds. Steve is a runner but when you are '50 something', running a marathon is no easy feat - not easy on your feet either :-) I had seen excerpts of marathons on television but this was my first time as a spectator at a live event.  One thing that struck me was the sheer number of people who were running for good causes. The usual big names were there (Cancer…
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Living with an incurable cancer – does mind over matter help?

Living with an incurable cancer – does mind over matter help?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
When I started blogging in 2014, it was relatively easy - all I needed to do was to talk about my experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian's Wall for a local Charity.  The blog was only ever intended to be a temporary supporting tool for the walk and its build up; but I was persuaded by good reviews and viewing numbers to keep it going.  That suddenly made it more difficult! In my early blogs, there were several 'no go areas' which were either too complex or potentially controversial.  I didn't really have much time to think them through properly at that point in time. However, I've since dabbled in some of these areas to test the waters.   I'm not a healthcare…
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