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The trouble with the ‘NET’ (Part 1) – internet dangers


true-pr-quotes-from-us-presidents-and-one-thats-fake-by-prdotco-4-638Of course, it’s impossible that Abraham Lincoln said this but I got the graphic from the Internet and that’s the point of this blog!

The rise of the NET has allowed people to use ‘social technology’ to help shape the world’s events and culture. Additionally, the NET has increased the speed of how relationships develop, the way information is shared and (whether you like it or not) how influence can be leveraged for gain.  Facebook has taught us new ways to communicate and collaborate through features like feeds, profiles and groups. At the same time, smartphones and tablets provide mobile and instantaneous access to information from any location.  Whether you like it or not, we are witnessing the power of social media and its effect on society.

However, the ‘NET’ can also provide ‘misinformation’. Unfortunately ‘misinformation’ also includes ‘alleged’ cures for various ailments including cancer.  I think we’ve all been there, we check twitter, Facebook, Pinterest etc and we find the ubiquitous miracle cures for every illness under the sun.  Easy to find, easy to read and worryingly, easy to share.  Surely these cures must be true, after all…..it’s on the ‘NET’.

When I was diagnosed with metastatic Neuroendocrine Tumours (aka ‘NET’ Cancer) in 2010, I took to the ‘NET’ to find out about my ‘NETs’ 🙂  However, I soon found out the NET is potentially more dangerous than my NET (Cancer).  Put a foot in the wrong place and ‘boom’.  Not only can you get easily lost but you end up with dubious information which looks pretty credible. Moreover, in some cases this can be unnecessarily stressful and upsetting for some.  Fortunately I had worked with information technology for years and combined with my sceptical but inquisitive nature, I was able to overcome this problem. It resulted in me writing a blog ‘Google is not a synonym for research. 

The champion ‘myth busters’ are the world-renowned Cancer Research UK and I always go there when I see something in the media which sounds too good to be true.  There is an excellent blog piece written by Cancer Research UK who debunked various cancer myths that seem to continuously patrol the NET, including on patient forums. Take a look at ‘Don’t believe the hype – 10 cancer myths debunked’.  Whilst you’re there, take a look at their Science blog as they always follow up the most recent headline grabbing newspaper articles claiming to have found the cure for cancer (again).  Cancer Research UK will always provide balanced commentary on these claims.

You may also enjoy:

My Neuroendocrine Cancer myths postclick here

Alternative Therapy risks (or lack of)click here

Miracle Curesclick here

Hope is great, false hope is not.

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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Exercise is Medicine


 

cropped-20140504_090836.jpgI suspect we all know exercise is good for us but it does sometimes take quite a bit of effort to get out there and do some! Apparently the older you get, the harder it becomes (I can confirm this is true!).  I did write about this in 2014 (Exercise – it’s a free prescription).  In fact, my blog  was actually created to document my return to fitness and good health 12 months ago!

I was prompted to write this blog after discovering a piece of advice for NET Cancer patients, specifically those with carcinoid syndrome. The advice is one of those catchy ‘single letter’ lists called the “5 E’s” of things to avoid – one of which is ‘Exercise’.  Clearly ‘Exercise’ needs putting into some context as everybody needs to do some even if it’s only a walk to the shops or some gardening.

There is a lot to be said for cancer patients to do some form of exercise and I know from my own experience, and from some really good on-line evidence, that it does have excellent medicinal value. For example, it can keep your weight in check, makes you stronger and keeps you feeling youthful (mind over matter is also a good thing!). Can exercise can make you a happier person? I think so. Last year, my wife and I committed to an 84 mile trek along Hadrian’s Wall in North England and we spent 3-4 months preparing. I was very thankful to her for continuously dragging my butt out of bed and into the forest close-by.  During this period, we both felt less stressed out, less anxious, we slept better and we were generally happier.  I suspect there is some scientific evidence about why this happens i.e. exercise releases ‘happy chemicals’ into/interacting with your brain, mostly ‘Dopamine’ and ‘Endorphins’.

In my own case, I’m currently non-syndromic since major surgery and monthly injections of Lanreotide. I therefore suspect the risk of exercise causing me problems is pretty low. In any event, I’m unlikely to indulge in anything really strenuous!   I also know many NET patients who exercise frequently.   However, I know from reading on-line forums that many people suffer from varying degrees of carcinoid syndrome and I suspect the advice is directed to those who may be more at risk. That said, I still believe most people would benefit from some exercise and this is something their doctors might advise on.

Exercise safely people.  I’m off for a long walk 🙂

Thanks for reading

Ronny Allan

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Things are not always how they seem


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Things are not always how they seem

Last year, 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.

I know from reading and participating in Neuroendocrine Cancer (NET Cancer) forums that many patients with my own condition frequently encounter people who clearly do not understand much about the effects of NET Cancer on someone’s body (and mind) and day-to-day living which for many can be described as a struggle.  I read one story about a lady who was accused by a co-worker of faking her cancer because she looked so well! How many of my NET Cancer patient readers have been told they look really well?  This is something frequently said to me and I now respond with the customary “Yes, but you should see my insides“.

Not many NET Cancer patients are subjected to the rigours of chemotherapy and I for one am thankful for that. However, many NET cancer patients have had some ‘bad ass’ surgeries and will be treated for the remainder of their life with (at least) large anti tumour and hormone inhibiting injections and perhaps other side effect inducing drugs.  There is no 5 year or indeed any remission for many NET Cancer patients.  What is incurable has to be endured!  Moreover, they will be tested at regular intervals to ensure remnant tumours are ‘at bay’ and that no new ones have appeared. So the potential for a new or re-diagnosis is there at every single meeting with their specialist.  All of that comes with a price in terms of quality of life.

I’m not trying to compete with other cancers or chronic illnesses, I’m just saying that a NET Cancer patient who looks well, may not be well inside – body and mind!  Nor am I asking for pity – I am, however, asking for understanding.

 

You're kidding me!

You’re kidding me!

When I read about some of the issues others deal with, I suspect I’m one of the luckier patients. I’m in reasonable condition and put up with a number of minor irritants which I suspect are due to the consequences of my cancer treatment rather than from Carcinoid Syndrome.  However, one thing that does scare me from time to time is stomach cramps. Hopefully I’m not tempting fate as they seem to be reduced this year.  However, when I suffer these, it does worry me, not just because they can sometimes be very painful and debilitating, but I know that I must go to the toilet ASAP. Handy if I’m in the house, not so handy if I’m on a plane, down town or anywhere where toilets are not in abundance.

npf-toilet-card1_Page_1-300x171I try not to let this problem stop me leading as normal a lifestyle as possible and as I said previously, it doesn’t really happen that frequently.  Long flights are one of the few times I take Loperamide (Imodium) and for long drives and trips down town, I’m simply reliant on toilet availability. Sometimes I find only the disabled toilet is available and when it’s urgent I have no qualms about using it. Some of them are locked and you have to go get a key and again I have no qualms about asking for access despite my outwardly healthy look – nobody has argued yet.  If necessary (sufficiently urgent), I’ll even ask to use the staff toilets in shops etc.  I do have a card in my wallet which I obtained from my friends in the NET Patient Foundation but I’ve not yet had to use it ‘in anger’.

Are you nodding your head at these issues?   I also suspect quite a few of you will therefore enjoy reading an article which has given me the inspiration and motivation to update this blog post.  It’s about a lady who has major abdominal issues through surgery and illness (inflammatory bowel disease (IBD)) and to me this sounds like a worse condition than many NET Cancer patients endure.  She too looks outwardly healthy but this illness is clearly a major disability. I’d like to think this type of incident is not that common but her response to it was magnificent, well written and apparently it went viral. What great publicity that must have been for IBD.

Read the post here, it’s brilliant:  CLICK HERE TO READ
 (p.s. ‘Loo’ is British slang for toilet)

Read a newspaper article on the letter here CLICK HERE TO READ

Thank you for reading

Ronny

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