The WordPress.com people prepared a 2014 annual report for this blog.
Here’s an excerpt:
The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 13,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 5 sold-out performances for that many people to see it.
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’ then but I wanted to publicise 2 things:
Neuroendocrine Cancer awareness
give something back by fundraising for the medical team who treated me and then set up PLANETS Charity
The blog was a temporary mechanism for both and I never had any plans to extend it much beyond a summary of the challenge once it was complete. However, I received so much positive feedback that I decided to maintain the blog for a while longer. Eight months later, I continue to put my thoughts and ideas to ‘e-paper’ and it’s now my mission to raise awareness of Neuroendocrine Cancer (a.k.a. NET Cancer) and related issues for the foreseeable future.
My hope is that it will at least provide useful backup to the major NET Cancer organisations and help with their own awareness campaigns. I also hope it will be of some use to newly diagnosed patients as a summary of my personal experience with some signposts to credible advice and content – mainly the key NET Cancer organisations and support groups. I remember my first couple of months after diagnosis – the internet can be a minefield for the uninformed!
2015 looks like being an even more successful year for NET Cancer awareness than 2014 and I’m looking forward to doing my bit. I’m already working on new blog posts and ideas, some of them perhaps a tad controversial ….. so stay tuned! I’d like to thank every single person who has viewed at least one of my posts, liked my posts, rated my posts and contributed with comments. The experience has exceeded all my expectations. Moreover, it has given me the motivation and determination to continue delivering.
I have some plans to enhance my awareness campaign including:
Updating my blog site to make it look more like a web site with links/signposts to the most credible information and help for people who have found my site through searches. I also intend to publish ‘guest blogs’. It would be great if more people could ‘Follow’ my blog site so that I can attract other bloggers (NET and non NET). This will definitely help with spreading awareness.
A Facebook site in the form of a single page initially which I might then expand later once I assess its utility. I would be grateful if you could ‘Like’ my page in order that I can establish a viable presence and then exploit it with credible information and links. This page is not intended to compete with any forum site or closed Facebook group, this is just an expansion of my own NET awareness campaign plan for 2015 and is also aimed at non NET Cancer readers. I will remain an active member of forums and closed Facebook groups as this is what gives me a lot of my inspiration, motivation and knowledge to blog! I will, however, be posting useful information from credible NET Cancer organisations and other bloggers. You can ‘Like’ this page here: https://www.facebook.com/pages/NET-Cancer-Blog/476922399112723
On Twitter, I aim to burst through the 1000 follower total in the first quarter of the year. Twitter is a phenomenal outlet and in many ways, it potentially has a greater and more varied reach than other social media tools. I want to complement the two media outlets above with twitter coverage ensuring maximum awareness opportunities. You can ‘Follow’ me here: https://twitter.com/RonnyAllan1
I hope you all have a wonderful and very happy new year and I wish you all the best for 2015!
p.s. A summary of all my blog posts is below in order of the most viewed (although the newer posts still have developing view counts). My home page understandably has the largest view total accounting for nearly a sixth of all blog hits. If you are attracted by any of the titles below, feel free to have a look by clicking on the relevant post. Spare a thought for the lesser viewed posts – I was still learning and had a smaller ‘fanbase’ 🙂
As we approach NET Cancer Day, my thoughts return to 9 Nov 2010. I had been diagnosed with metastatic Neuroendocrine Cancer a few months before and told it was incurable. However, with ‘debulking’ surgery, my Oncologist said my prognosis could be significantly improved. I now know from my own research that Neuroendocrine Tumours are one of a small number of cancers for which surgical debulking confers some survival advantage. Another term used at the time was ‘cytoreductive’ surgery which means ‘to control symptoms and improve survival by removing or destroying disseminated tumour metastases’. Less neuroendocrine tumours should result in lower secretions of specific hormones which in turn should decrease the effects of Carcinoid Syndrome from which I was suffering at presentation. I’m still alive and kicking and don’t feel too bad at all!
The 9 hour operation was planned to debulk what was described as “extensive intra-abdominal neuroendocrine disease” and was first of a number of visits to an operating theatre. The surgeon removed 3 feet of small intestine at the terminal ilium plus a right hemicolectomy, a mesenteric root dissection taking out the nodes on the superior mesenteric artery and a mesenteric vein reconstruction. With the assistance of a vascular surgeon, my NET surgeon also dissected out a dense fibrotic retro-peritoneal reaction which had encircled my aorta and cava (almost occluding the latter). This was a risky procedure but 270º clearance was achieved. Although it was known I also had liver metastases and some distant ‘hotspots’, those were to be tackled at a later stage.
I left the hospital some 19 days later and was delicate for some weeks after that. I don’t recall what the plans were for Christmas Day that year but everything was changed so that it could be hosted at home organised by my ‘right-hand’ woman – Chris. It was a good plan, as I just wouldn’t have been able to go elsewhere and it was the best gift I could hope for that year. My 3 grandsons (I have 4 now !) were under strict orders not to jump on me – I had a 12 inch north to south wound still healing! However, I suspect the youngest who was not yet 2 years old at the time, didn’t really understand 🙂 I do have priceless grandchildren!
Not long after the present exchanging and the meal, I was so exhausted that I laid down and fell asleep immediately as a hint that I should be left alone for a bit! I thoroughly enjoyed the day and it functioned as a medicine along with the many others I was taking at the time. The whole day reminded me that I have a lot to live for, so I’m thankful for the surgery.
I’ve always had a ‘sweet tooth’ and the softer the sweet the better – toffee, marshmallows, chocolate, jelly babies, jelly beans, fruit pastilles, fudge, liquorice allsorts and macaroon are all on my list of favourites. In terms of desserts, I love those too – ice cream, cheese cake, meringue, cake, sponge with custard, the list is endless. And of course a hot drink isn’t complete without a biscuit (or three….). Don’t get me wrong, I’m not stuffing my face with sweet stuff 24/7, however I do need my sugar ‘fix’ now and then. I’m not a large person, I’m small ‘framed’ and although I was starting to look a bit ‘chubby’ early 2010, my Neuroendocrine Cancer diagnosis and subsequent treatment took care of that.
Coping with cancer is hard and it can lead to certain lifestyle changes including diet. This is also hard! Coping with the amount of available and contradictory dietary information on cancer is challenging too! There is also significant ‘chatter’ suggesting that sugar ‘fuels’ cancer cells. Apparently there are more than one million websites capitalising on this fear but virtually none offering any science. However, if you check reputable websites such as the main US and UK research agencies, you will see this link has not been scientifically proven and this claim is debunked on many reputable cancer websites in their lists of ‘cancer myths’. Of course the situation is not helped by the wide circulation of these myths by the misinformed via social media – we’ve all seen these haven’t we?
I’m not saying that sugar is a good thing but like many other facets of modern lifestyle, too much of a good thing won’t be good for long. The last thing any cancer patient wants is (yet) another debilitating or long-term chronic illness, something always in the back of my mind. I now watch what I eat although I try to keep a balance so that I can still enjoy some of my favourite foods – my food diary helps identify the ‘culprits’. I had actually cut down on sugar before I was diagnosed, it’s addictive so it can be hard work!
So are sweets dangerous for a Neuroendocrine cancer patient? Like a lot of other things, in moderation they probably don’t do any harm but that’s based on my own experience. The amount of specific amines in foods can be a useful guide to how much you eat. Please note not everyone has bad reactions and foods high in these amines do not fuel tumour growth! Moreover, the only time you should really avoid these high amine foods is just prior to a 5HIAA test (unless you have a consistently bad reaction to them of course). Chocolate is said to be “moderately high” in tyramine, dopamine, xanthenes and theobromine. One size doesn’t fit all though and NET nutrition guides emphasise the amount will often matter more than the food itself. I will therefore continue to eat small amounts 😃 If you want to learn more about NET nutrition – read here.
I think sweeet stuff is more dangerous for those at risk of diabetes more than any potential syndrome effect. Read more about Diabetes and NETs by clicking here.
Let me complete the blog with a recent personal incident regarding chocolate indicating there is a dark side to it (no pun intended!). I cracked a tooth whilst eating a piece of chocolate in 2014. I never found the broken piece so I assumed I’d swallowed it. I kept a lookout for a few days but no sign and I presumed I just missed it. However, 32 days later, my regular surveillance CT scan revealed an “ingested foreign body or ‘entrolith’ within a loop of the small bowel”. A bit of a worry given the amount of surgery I’ve had. My Consultant said it would eventually work its way out of the body naturally and it did. Phew!
Apologies to anyone unable to eat any chocolate without an adverse reaction 😡
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 being diagnosed with Neuroendocrine Cancer (NET Cancer). Like many other NET Cancer patients, I feel I need to know a lot more than the average cancer patient. For me, this can be attributed to a number of reasons including (but not limited to):
This type of cancer is uncommon and even some medical staff struggle to understand it. I want to be able to articulately explain my condition when this happens.
When speaking to those who do understand it, I want to understand what they are telling me. Moreover, I want to challenge them when I don’t understand (or don’t agree with) what they are telling me.
My condition and its treatment comes with side effects and I want to understand what these are and how they might impact on my quality of life so I can manage that and/or seek assistance.
……. I suspect I’m still a control freak!
I’ve gained my recent medical knowledge by carefully studying well-respected websites and publications but I’m always very selective about which sites to trust – see blog Google is not a synonym for research. Through this process, you also learn who the specialists are and seek out their articles and publications. That’s not to say I fully understand everything I read or interpret in the right context! However, if you want to become your own ‘advocate’ or be a ‘proactive patient’, then knowledge is one of the things that can empower you.
One of my most recent ‘educational discoveries’ was a 12-year-old (but still relevant) paper found on the Carcinoid Cancer Foundation’s website. It comprises the text of a presentation by Dr Gene Woltering entitled “Introduction to the Basic Science of Carcinoid”. Dr Woltering is a well-known NET Cancer ‘guru’ from USA. As an Endocrine expert, he certainly knows about hormones. I found his paper fascinating even without the accompanying slides. What Dr Woltering has been able to do is to bring the science of carcinoid (I think he meant Neuroendocrine Tumours in general) to the level where it could be understood by patients – he certainly had the motivation as it was directed at 200 carcinoid patients who can be very inquisitive types 🙂
Dr Woltering is ‘direct and to the point’ which I really appreciate from medical staff. Not only is this paper informative to the point of being extremely useful to inquisitive patients, but there is some really interesting history in it too. For example the first use of Octreotide in USA and its first use in the treatment of ‘Carcinoid Crisis’. The ‘plain language’ description of the role of ‘somatostatin’ and ‘somatostatin analogues’ (a man-made version) is more understandable than other versions of these processes I have read previously. I strongly recommend this paper (CLICK HERE) to NET Cancer patients with a thirst for a deeper understanding of their disease.
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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 cancers including the larynx (voice box), oesophagus (gullet), mouth and pharynx (throat), bladder, pancreas, kidney, liver, stomach, bowel, cervix, ovary, nose and sinus, and some types of leukaemia. There is also some evidence that smoking could increase the risk of breast cancer. The anatomy is pretty well covered by the risk of smoking.
I haven’t seen any evidence that smoking increases the risk of Neuroendocrine Tumours (NETs) in the relevant parts of the anatomy listed above but I wouldn’t be surprised if there was a connection or at least an increased risk with certain types and/or locations of NETs. Although years of research have proven that smoking causes cancer, this doesn’t mean that all smokers will definitely get cancer or that all non-smokers won’t. It means that smoking greatly increases the risk of this disease. Smokers are, on average, much more likely to get cancer than non-smokers.
One of my other activities outside of NET Cancer awareness and support work, is my role as a Cancer Research UK Campaigns Ambassador for New Forest West (a UK Parliament constituency in West Hampshire on the border with Dorset). Through this task, which I support in my own time for free, I’ve been helping Cancer Research UK with their various campaigns, in particular, the one to introduce standard tobacco packaging into the UK. Evidence shows that removing all branding and design from tobacco packs makes it less attractive for both adults and children. This is a controversial measure opposed by the tobacco industry and their sponsors. However, it was voted through by the UK Parliament early this year and is currently in a consultation phase. The general election may delay its introduction as law but hopefully this will become a reality in 2015. Clearly the tobacco industry is involved in rearguard actions ‘as we speak’.
When I was given the campaign material to read in Dec 2013, I was totally shocked by some of the statistics provided:
Since tobacco advertising became illegal in the UK in 2002, tobacco companies have invested a fortune in branded packaging to attract new smokers, particularly younger people;
Around 207,000 children aged 11-15 start smoking in the UK every year (6,900 classrooms worth). This means that nearly 570 children are lighting up and becoming smokers for the first time every day. Addiction keeps them smoking into adulthood, where it then kills one in two long-term users;
Two thirds of new smokers start before they are 18 and the vast majority while still teenagers;
Smoking-related diseases kill over 100,000 people in the UK every year. Worldwide the figure is 6,000,000 and projected to rise to 8,000,000 by 2030.
Tobacco use caused 100 million deaths worldwide during the 20th century, and if current trends continue it will kill 1 billion people in the 21st century.
Standardised tobacco packaging (sometimes known as plain packaging), is not a UK initiative. Australia was the first country in the world to introduce standardised packaging for tobacco products in December 2012 and have since reported the biggest fall in smoking for 2 decades. In addition to the UK, New Zealand and Ireland are working on similar legislation. Other countries are considering or have committed to some action including France, EU, Norway, Canada, India and Turkey. Countries said to be opposing such measures include USA, Italy, Bulgaria, the Czech Republic, Greece, Poland, Portugal, Romania, Slovakia and Spain.
You can read more about standardised tobacco packaging at this link here: http://www.cancerresearchuk.org/support-us/campaign-for-us/setting-the-standard-for-plain-cigarette-packaging/evidence-and
For UK nationals, you can help keep the pressure on the government to introduce the legislation quicker by emailing your Member of Parliament – see button labelled ‘Email your MP’ within the above link.
For other readers, you will probably find similar campaigns in your own national organisations and I recommend you read what they have to say.
Thank you for reading! I would love to hear your feedback on this issue so fire away!
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