Breath test with the goal of detecting multiple cancers – ready to start trials

breath_test_patient-hero

While it’s a long way off becoming reality, this is quite an exciting clinical trial. I have no idea if it will pick up Neuroendocrine disease but initially, patients with suspected oesophageal and stomach cancers will be asked to try the test. Later it will be extended to include prostate, kidney, bladder, liver and pancreatic cancers. It’s possible that Neuroendcorine tumours in these locations might be picked up or at least show up some abnormality that triggers further checks.

The fact that Cancer Research UK is involved gives me some confidence as they tend to back the strong horses.

I will keep this article live and track developments.

Read more by clicking here.

Thanks for reading

Ronny

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How to Talk to a Cancer Patient Without Being a Complete Twit

I enjoyed reading “8 rules on how to talk to a cancer patient” because I think much of it is written with ‘tongue in cheek’.  Great title!

In UK we might even spell the word ‘twit’ slightly differently (UK people will get it!). Some of the rules are directed at doctors and I’m sure some doctors will laugh (if you’re a doctor and you didn’t laugh, sorry). I think one or two are a bit harsh and could potentially backfire and at least one I partly disagree with.  Personally I try to balance my reactions to not come over as a ‘pity party’ and something which is genuinely offensive or upsetting to me as a cancer patient.  I appreciate understanding and empathy, perhaps sympathy, but I certainly don’t want pity.

I’ve added rule number 9 which is a true story I picked up in my own community which I found absolutely unacceptable and I certainly did not laugh.  Thanks to ‘Patient A’ for the quote.

Read the 8 rules here:

https://www.mcsweeneys.net/articles/how-to-talk-to-a-cancer-patient-without-being-a-complete-twit

You may also enjoy this article which contains 16 ‘red flags’ that might mean it’s time to find a new doctor.  Easier in some countries than others and I suspect we have all encountered at least one of them.  I don’t think we should be changing doctors too often and we shouldn’t be changing just because of one of these ‘red flags’ (although the example above is pretty offensive).

16 ‘Red Flags’ That Might Mean It’s Time to Find a New Doctor

Another good one is an actor based video which discusses about the things people sometimes say (often clumsily) to patients that often don’t hit the right chord – check out my article “Things not to say to a someone with cancer“.

And of course we all look so well as Neuroendocrine Cancer patients – but you should see our insides.
Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

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My Diagnosis and Treatment History

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

Can NETs be cured?

cure quote

OPINION:

“Cured” – In cancer, this word can evoke a number of emotions. Interestingly, not all these emotions will be as positive as you might think. If you want to spark a heated debate on a Neuroendocrine Cancer patient forum, just mention that you’ve been cured.

I’ve been living with Neuroendocrine Cancer for 8 years so I must be cured, right? Unfortunately not as straightforward as this, and I’m guessing this is the case for many cancers. Doctors clearly need to be careful when saying the word “cured‘ even if there is a small likelihood that a cancer will recur.  There’s plenty of ‘conservative’ and alternative terms that can be used, such as ‘stable’, ‘no evidence of disease (NED)’, ‘in remission’ or ‘complete response’.  However, I don’t see the latter two much in Neuroendocrine disease circles.

So with all these ‘ifs’ and ‘buts’, what exactly is a cure?

Answering this question isn’t a simple case of ‘yes’ or ‘no’, because it depends on the way that the term ‘cancer’ is defined. It should actually be viewed as an umbrella term for a collection of hundreds of different diseases. They all share the fundamental characteristic of rogue cells growing out of control, but each type of cancer, and each person’s individual cancer, is unique and comes with its own set of challenges.

That’s why it’s very unlikely that there will be one single cure that can wipe out all cancers. That doesn’t mean individual cases of cancer can’t be cured. Many cancers in fact already can be. Scientists aren’t actually on the hunt for a ‘silver bullet’ against all cancers, Quite the opposite. The more scientists get to know each type of cancer inside and out, the greater the chance of finding new ways to tackle these diseases so that more people can survive. Thanks to a much deeper understanding of cell biology and genetics, there exist today a growing number of targeted therapies that have been designed at a molecular level to recognise particular features specific of cancer cells. Along with chemotherapy, surgery and radiotherapy, these treatments—used singly and in combination—have led to a slow, but steady, increase in survival rates. You can definitely count Neuroendocrine Cancer in that category.

Cancer is seen today less as a disease of specific organs, and more as one of molecular mechanisms caused by the mutation of specific genes. The implication of this shift in thinking is that the best treatment for, say, colorectal cancer may turn out to be designed and approved for use against tumors in an entirely different part of the body, such as the breast. We’re certainly seeing that with certain targeted therapies and more recently with Immunotherapy.

Surely a cure is more possible if cancer is diagnosed earlier?

To a certain extent this is true for many types of cancer, not just for NETs.  In fact the same scientists did say ….”We detect those attacks when they’re still early, before the cancers have widely spread, at a time when they can still be cured simply by surgery or perhaps surgery and adjuvant therapy, which always works better on smaller tumors.”.  

What about Neuroendocrine Tumors (NETs)?  Clearly I’m not qualified to make such statements except to say that I am of the opinion that earlier diagnosis is better for any curative scenario.  When you read NET guidelines (ENETS/NANETS etc), the word ‘cure’ and ‘curative’ is mentioned in relation to surgery.  Bearing in mind that our most expert NET specialists are involved in the drafting of these guidelines, perhaps we should pause and think before dismissing these claims.  Having checked ENETS publications, I can see it’s related to certain conditions and factors such as localisation within the organ, tumour size, good resection margins, and a suitable follow-up surveillance.

Clearly with advanced disease, the cancer becomes incurable but treatment for many being palliative to reduce tumor bulk and reduce any symptoms and/or syndrome effects. Despite this, the outlook for metastatic NETs at the lower grades is good. While we’re talking about palliative care, do not confuse this with end of life, that is only one end of the palliative spectrum.  It can and is used at the earliest stage of cancer.

Immunotherapy will eventually cure cancer, right?

Immunotherapy will play a huge part in cancer treatment in the future, that we know.  But to suggest that it’s a cure is probably overstating its current success.  Neuroendocrine Cancer has not been forgotten – you can read more about Neuroendocrine Cancer and Immunotherapy here.

I heard the Oncolytic Virus at Uppsala is a cure for NETs?

There is currently no scientific evidence that the Oncolytic Virus (AdVince) can cure humans with Neuroendocrine Cancer.  So far it has only been proven in destroying neuroendocrine tumours in mice. The Oncolytic Viruses developed in Uppsala are now being evaluated in phase I clinical trials for neuroendocrine cancer.  If you’re not up to speed with this trial, read more here – Oncolytic Virus Uppsala

Isn’t prevention better than a cure?

This old adage is still relevant BUT latest thinking would indicate it is not applicable to all cancers.  Scientists claim that 66% of cancer is  simply a form of ‘bad luck’ and if the claim is accurate, it follows that many cancers are simply inevitable. The thinking suggests that random errors occurring during DNA replication in normal stem cells are a major contributing factor in cancer development confirming that “bad luck” explains a far greater number of cancers than do hereditary and environmental factors. This scientific thinking is a tad controversial so it’s worth remembering that even if, as this study suggests, most individual cancer mutations are due to random chance, the researchers also admit that the cancers they cause may still be preventable. It’s complex!

The newspapers are always talking about breakthroughs and cures for cancer?

Newspapers looking for a good headline will use words such as ‘cure’. Sadly, headlines are generally written by sub-editors who scan the article and look to find a ‘reader-oriented angle’ for the heading. They either can’t or don’t have time to understand what’s actually being said. Unfortunately this then leads to people sharing what is now a misleading article without a thought for the impact on those who are worried about the fact they have cancer and whether it can be cured or not.  There’s also a lot of fake health news out there – check out my article series about the problems with the internet and ‘Miracle Cures’.

To cure, they must know the cause?  

To a certain extent, that’s very accurate.  Have you ever wondered what caused your NETs?  I did ponder this question in an article here.  The only known cause of NETs is currently the proportion of patients with heredity syndromes – see my article of Genetics and Neuroendocrine Cancer.  Interestingly, the NET Research Foundation recently awarded funding to look at the causes of Small Intestine (SI) NETs (one of the most common types).  A scientific collaboration between UCL, Dana-Farber Cancer Institute, UCSF Medical Centre and the UCL Cancer Institute / Royal Free Hospital London. The team’s approach has the potential to identify inherited, somatic (non-inherited) genetic, epigenetic and infectious causes of SI-NETs.  The research is questioning whether SI-NETs are caused by DNA changes in later life or by aberrant genes inherited at birth; environmental influences or infectious agents – or is it a combination of all these factors?  Very exciting. Read more here.

What would a cure mean to those living with NETs?

This is something that has crossed my mind, even though I don’t believe it will happen in my lifetime.  I guess it would be good to get rid of the known remnant tumors left behind from my treatment (and any micrometastases currently not detectable).  However, many NET patients are living with the consequences of cancer and its treatment, including surgery, chemotherapy, biological therapy, somatostatin analogues, radionuclide therapy, liver directed therapy, and others.  Many of these effects would remain – let’s face it, a cure is not going to give me back bits of my small and large intestine, liver and an army of lymph nodes. So support for those living with NETs would need to remain despite a cure.

Summary

The emotional aspect of the word ‘cured’ seems to be an issue across many cancers and it’s certainly very controversial in NET circles.  The world has still not cured the many cancers that exist. But over the next five to ten years the era of personalised medicine could see enormous progress in making cancer survivable.  I think both doctors and patients need to take a pragmatic view on the ‘cured’ word and to end this article I wanted to share an interesting quote I found whilst researching.

cure quote

The trouble with the NET (Part 3) – Miracle Cures


Since I started blogging, I’ve had to become quite savvy at forming headlines for my posts as the wording can be a factor in whether someone reads it or not. A post picture can also influence.  There’s a third factor and that is credibility – I’d like to think I’ve worked hard to earn that level of trust in my ‘product’. I use the NET to talk about NETs!  I’m a genuine guy with a genuine purpose and I don’t want to sell you anything – my ‘product’ is free.

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, annoying shared by our friends.  Easy to find, easy to read and worryingly, easy to share.  Surely these cures must be true, after all…..it’s on the ‘NET’.

I was, therefore, delighted to see that the U.S. Food and Drug Administration (FDA) recently posted warning letters addressed to 14 U.S.-based companies illegally selling more than 65 products that fraudulently claim to prevent, diagnose, treat or cure cancer. The products are marketed and sold without FDA approval, most commonly on websites and social media platforms.  Clearly, this is not just a USA problem, I suspect you all could tell me similar stories from your own countries? I just read a story from my own local area only last week. This is only the tip of the iceberg though!

Most of these claims are from obscure unheard of websites (clue 1) and yet they claim to have the cure for all sorts of illness including cancer (clue 2). They normally have a product to sell (clue 3). Clue 4 and onwards can be found by digging into their claims to see if there is any scientific evidence – normally there’s none; or it looks believable but the authors are also the owners of the company selling the product.

Here are some of the tactics they use plus a commentary from the US FDA:

  • One product does it all. Be suspicious of products that claim to cure a wide range of diseases. A New York firm claimed its products marketed as dietary supplements could treat or cure senile dementia, brain atrophy, atherosclerosis, kidney dysfunction, gangrene, depression, osteoarthritis, dysuria, and lung, cervical and prostate cancer. In October 2012, at FDA’s request, U.S. marshals seized these products.

  • Personal testimonials. Success stories, such as, “It cured my diabetes” or “My tumors are gone,” are easy to make up and are not a substitute for scientific evidence.

  • Quick fixes. Few diseases or conditions can be treated quickly, even with legitimate products. Beware of language such as, “Lose 30 pounds in 30 days” or “eliminates skin cancer in days.”

  • “All natural.” Some plants found in nature (such as poisonous mushrooms) can kill when consumed. Moreover, FDA has found numerous products promoted as “all natural” but that contain hidden and dangerously high doses of prescription drug ingredients or even untested active artificial ingredients.

  • “Miracle cure.” Alarms should go off when you see this claim or others like it such as, “new discovery,” “scientific breakthrough” or “secret ingredient.” If a real cure for a serious disease were discovered, it would be widely reported through the media and prescribed by health professionals—not buried in print ads, TV infomercials or on Internet sites.

  • Conspiracy theories. Claims like “The pharmaceutical industry and the government are working together to hide information about a miracle cure” are always untrue and unfounded. These statements are used to distract consumers from the obvious, common-sense questions about the so-called miracle cure.

The rise of the internet means that we need to be very careful what we believe, particularly when the term ‘fake news’ is abundant.  The people who work in this ‘dark’ industry are very clever, playing on the mind and fears of those who suffer from cancer and other illnesses which they claim they can cure. Many of them are easy to spot or at least attract your suspicion as you can see above.  I’m concerned that some of them make their way onto patient forums unchallenged by the administrators (leave those groups, they are a danger to your health).  Here’s something you’re probably not aware of….. I am targeted weekly by people and organisations who want me to advertise their ‘product’ to you guys, some of them are very dubious indeed.  I have a “no selling” rule on my site so it’s easy for me to reject anyone approaching me in this way – the very dubious are blocked immediately.

See an article where this post was featured ……  Click Here

I will never share this sort of thing on my site and I even check official looking mainstream media articles for the background scientific data before I would share here.  For me, regardless of the headline or post picture, this is where credibility comes in.  Often (whilst everyone else is sharing), I wait on informed comment from credible organisations such as Cancer Research UK who very frequently have to dampen down the excitement caused by mainstream media ‘headlines’ by providing a more balanced and evidence based view.  I’ve blogged before about Cancer Research UK in the post The trouble with the NET (Part 1), The trouble with the NET (Part 2) (with mention of Steve Jobs and Neuroendocrine Cancer).  I particularly like their blog 10 persistent cancer myths debunked.

Sharon said …… “This is SO important. As an RN and a NET patient, I am appalled by some of the things I see on Facebook. People facing chronic or terminal illnesses are so vulnerable. Thank you, Ronny Allan”

Be careful out there – it’s dangerous!

Thanks for reading

Let’s talk about living with NETs

being_there_front
Graphic courtesy of Ellie McDowell

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 to dabble in death – it’s just quite difficult to talk about it in a blog which is part designed to be positive and offer hope. So why am I talking about death inside this positive blog? Well, apart from thinking the thread mentioned above might scare readers who are already frightened by their diagnosis, perhaps quite recent, and do not want the answer to this question, I also think it might be perceived as a bit ‘glass half empty’. Both of these things are not good, thus why I believe the question should be between the person wanting to know and a specialist.

I also believe the “how will I die of Neuroendocrine Cancer” question is a really big assumption about the cause of death. Why? There’s an increasing chance a person with cancer today will die of something else. For example, in UK today, more than one in three (35%) of those people who die having had a cancer diagnosis will now die from other causes. This is up from one in five (21%) 20 years ago. By 2020 this will improve further to almost four in 10 people (38%). This means the number of people who get cancer but die from another cause has doubled over the past 20 years. The cancer story is changing and a quick bit of research confirms it’s changing on a worldwide basis.

On a similar subject, for those looking online for NETs prognostic data, I offer the following advice:

  1. Be careful surfing the internet, some sites have NETs prognostic data from the ark.
  2. Even if you find the very latest data, interpretation is difficult due to the heterogeneity of NETs, different stages and grades, comorbidities, age and no doubt many other factors. Please also note the ‘very latest’ data is probably a few years old.
  3. It’s a difficult question even for a specialist.
  4. I’ve lost count of the number of people who have told their story about being told a period of time from their specialist (including use of the word ‘terminal’) and they are still here a significant period after, in some cases 10 x what their specialist said.
  5. AND DEFINITELY Check out the comments on this Facebook post – here (over 400 people like this post so far – so press that button!)

Here’s a much better question people should be asking ……How do I live with NETs?”

Fear won’t stop you dying but it might just stop you living.

Thanks for reading

Ronny – 8 years and still a newbie

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Neuroendocrine Cancer – the devil is in the detail

Nick Robinson BBC
Nick Robinson BBC

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 go until he got an answer – or at the very least he would paint them into an embarrassing corner. It’s a tough job as most politicians are extremely wily characters, masters of ‘double speak‘ and expert in answering a question without getting into the detail the questioner wants.  As we all know, the devil is in the detail.

Although the article introduces some new facts about his cancer experience, I was really looking for more detail.  That said, even without the ‘devil’, the latest article is inspiring for most (….man goes back to work after a tough fight with Cancer).

So why am I so interested in the detail of Nick’s Cancer? Simple – because he does not have Lung Cancer as frequently and widely reported in the media. Lung Cancer is the ‘politician’s answer‘ or the ‘double speak answer’ to avoid going into complicated detail. The correct answer is he has Neuroendocrine Cancer with a Lung Primary.

I’d really like to turn the tables and interview Nick, we seem to have so much in common. We are both self-confessed workaholics, we both went to an annual Asthma clinic, we both told our Asthma nurses we had lost weight and we both were sent for a scan as a result. Following our scans, we were both diagnosed with Neuroendocrine Cancer.  Like Nick, I also have an interest in politics but wouldn’t make a good one due to my love of detail and hate of ‘double speak‘.

This is not a new problem for Neuroendocrine Cancer.  The most famous of patients is the Apple founder and now deceased Steve Jobs.  He is frequently (even to this day) reported to have had Pancreatic Cancer rather than Neuroendocrine Cancer of the Pancreas (an Insulinoma to be precise).  Although not as famous as Jobs, UK musician Wilko Johnson (of Dr Feelgood fame) is a similar story. I touched on this dilemma in my article The Human Anatomy of Neuroendocrine Cancer.

Nick – good luck with the new job.  By the way, it’s really OK to say you have Neuroendocrine Cancer!

 

You can read the full article here if you have a Times subscription.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

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

Let’s attack Cancer metaphors

Let’s attack Cancer Metaphors

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 in any ‘violent’ way……….  Dear trendy writers,  please stop misinterpreting what language people use for your own trendy populist purposes. 

One of the arguments used by these ‘trendy’ writers and newspaper authors against the use of what they perceive to be ‘military’ or ‘violence’ metaphors, is that people die of Cancer and therefore they are seen to have ‘lost’ their battle or fight. Clearly, it’s sad when anyone dies of any illness.

We all die at some point, ‘life’ eventually kills us. Yet, few people are reported to have lost their fight with life. So why focus this “fight” debate on cancer?

I have access to ‘reinforcements’ and ‘allies’; and their ‘weapons’ in my battle with cancer.  There are many options including surgical strikes with invasive and minimally invasive forays. The use of WMTD (weapons of mass tumour destruction) is authorised if applicable, i. e. I have chemical and nuclear options. Using these ‘weapons’ and deploying them both strategically and tactically, I can put up the best fight possible and by adjusting the disposition of my ‘forces’ when required, I can delay the advance of the ‘enemy’, protect my flanks and force it to change its course or retreat.

Not happy with infiltrating your body, Cancer also wants to take advantage of your fragile state by playing with your mind. It does this by creating the illusion of an uncertain future, makes you worry about your family and makes your family and friends worry about you. I’ve therefore also deployed a psychological warfare capability to counter this threat. It’s a weapon known as ‘a positive mindset’.

If it finally gets me, I know I’ll have tried my best and I will go down fighting hoping to be mentioned in despatches. I certainly do not see this as a defeat and anyone who knows me will not think that either.  I know that others will carry on the ‘fight’ in my absence until Cancer is defeated (and it will be defeated).

Just my approach, please don’t take offence as none is intended.

I believe people quite naturally ‘fight’ in their own way and there are even parts of the human anatomy whose job it is to fight illness and infection without us even realising they are doing it. So whether we like it or not, our bodies are fighting illnesses and we cannot stop them doing it. It’s natural.

In fact, to ‘fight’ has many contexts and not just the contrived ones used to argue against use of these metaphors. If you check the Oxford/Cambridge dictionaries (the Supreme Headquarters of the English language), you will see that ‘fight’ has numerous meanings including “to struggle to overcome, eliminate or prevent” or “to strive to achieve or do something”. What that means is that some people will use the word fight to describe the ability to get out of bed in the morning, to walk to the local shops, to go to a restaurant for a meal. Fighting to see a doctor who understands their cancer, fighting for access to the best treatment, fighting when you think someone isn’t listening. I fight cancer by writing a blog. The context is really important.

As for me, I have no intention of ceasing the use of words such as ‘fight’ and ‘battle’ in my war of words with Cancer.  It’s my way of coping.

I’m loving this article – Cancer Ninja

Read this post to know why – WHY I FIGHT

 

Thanks for reading

Ronny

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Cancer doesn’t take holidays (but I do)

20150402_121150
Mt Jacinto near Palm Springs

After diagnosis in July 2010, holidays were put on the back burner, there were too many problems and too many risks – not least of which was the lack of overseas insurance cover for my condition (well, I’m sure they’d quote me but could I afford it?). After 2 years of treatment including several surgeries, I was feeling more confident and my body had become stronger, holidays were put back on the agenda, but nothing too strenuous, nothing too far away.

However, 2 more years down the road, Chris and I are just back from a 12,000 mile round trip (21 hours on an aeroplane), around 1200 miles/20 hours of driving from beaches to deserts and mountains and back again, 8 different hotels and some great sights and adventures including 200 miles of driving in the Californian ‘wilderness’ picking up some sections of Route 66.  The picture in the blog needed a ‘white knuckle’ cable car ride up to 8500 feet followed by a 2 hour hike in noticeably thinner air.  Worth it!

Did I have issues? Yes. Were they inhibiting? Not really. Was I exhausted on return?  Yes (….I still am!). Did my travel insurance cover me for NET Cancer treatment? No. Was it worth it? Absolutely, I was extremely confident I wouldn’t have a NET Cancer problem and was therefore happy to take the risk (everyone needs to take their own decisions). My travel insurance at the time covered me for all other medical emergencies worldwide and within the European Union (EU) countries I’m covered for medical treatment using the E111 system – however, the latest trip was to California where medical treatment can be very expensive for the uninsured.  Note – in 2016, I’m now covered for NET treatment worldwide.

Holidays now have to be planned around treatment, mainly monthly injections – not too much of a drama.  I have to take my daily blood thinning injections with me on the plane. I have a letter from a Doctor to explain but I’ve always been waved through without question. When required, I will change a monthly injection date by up to a week each side – no issues to date.  That said, I’m impressed by the logistical talent of my friend Hilary, she’s gone to Australia for a month and has arranged an Octreotide injection whilst she’s there!

Cancer doesn’t take holidays, but I do.  Sometimes, you just have to get on with it 🙂

Ronny

Thanks for listening

Ronny

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Turning a negative into a postive

Lung Cancer Breathalyser
Lung Cancer Breathalyser

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 final post was written by her mother (excuse the swear word on the blog graphic) and the penultimate was published in the Times and went fairly viral on twitter. Her blog site is here (click)

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Thank you for reading

Ronny

Disobedient Objects

Disobedient Object - home made gas mask
Disobedient Object

My wife and I were in London recently and we took the opportunity to visit the world-famous Victoria and Albert (V&A) Museum in South Kensington.  A particular display caught my eye entitled “Disobedient Objects” and I immediately thought it had a scientific sound to it.  Imagining a set of everyday objects which somehow didn’t behave as you would expect, it sounded great fun so I wandered in.  How wrong I was, it was actually an exhibition examining the powerful role of objects in movements for social change.  The term ‘disobedient’ was used as these objects were designed by grassroots social movements mostly for use in street protests.  These ranged from bike locks for chaining your head to a fence to makeshift tear gas masks; to large inflatable cobblestones designed to act as a barricade between protestors and charging police without causing damage.

Disobedient Object

However, I found myself becoming interested in the story behind the display which focussed on protests by people who had taken to the streets because they felt they had no other option to make their point known; or simply to show mass support for a cause they believed needed a much louder voice – their mission was to effect change. My interest increased when the exhibit video explained that the expansion of the internet and social media had brought new ‘online’ ways of  ‘protesting’ or ‘campaigning’ to ‘effect change’ and some of these are now particularly powerful in many democratic societies.  They are also much easier and safer to do than taking to the streets! For example in the UK, e-petitions which have reached 100,000 signatories can result in the petition subject being brought before a House of Parliament committee for further action.  Social media is also very powerful if you can get a high-profile supporter to post or tweet your ‘campaign message’ and make it go ‘viral’.  Some of these online ‘protests/campaigns’ will make it into the national newspapers and national TV news – particularly powerful for the third sector if the campaign is associated with signatures for e-petitions and/or charitable donations (viz a viz ice bucket challenge etc).

Campaign by blogging
A modern ‘Disobedient Object’

Whilst I was in this exhibition, it suddenly occurred to me that these people had the same type of mission as I do except that I use a modern (and safer) version of ‘disobedient objects’ in the form of this blog and it’s associated Facebook page.  I’m also a regular signer of e-petitions for causes I believe need my support.  I’m certainly not alone and it’s a sign of how the internet has changed the way we live, the way we think of ourselves and how we interact with each other and our governments. My blog and its associated Facebook site is designed to spread awareness of Neuroendocrine Cancer and offer support to people affected or interested in the disease.  However, it is also there to help ‘effect change’ alongside and in support of the mainstream Neuroendocrine Cancer organisations across the world. You will therefore be pleased to hear that I’m not inviting you to take to the streets in protest about the lack of attention paid to Neuroendocrine Cancer.  There is no need to chain yourselves to railings, face tear gas or throw large inflatable objects at the police 🙂 So, go on……. be ‘disobedient’ and help me ‘effect change’ by raising awareness of Neuroendocrine Cancer and the issues faced by patients who are living with the disease.   What do I need you to do?

-Please ‘Follow’ this blog (you will find the ‘Follow’ button above or below the post depending on the machine you are using)

-Please ‘Like’ my Facebook page: https://www.facebook.com/NETCancerBlog/    (please ensure you like the page rather than a single post on the page)

-Are you on twitter? ‘Follow’ me here: https://twitter.com/RonnyAllan1

-Please also considering sharing my blog posts, Facebook posts and tweets as widely as possible.  Sharing is caring 🙂

Thanks for reading and hope you had a wonderful time being disobedient!

Ronny

 

If you want to learn more about the ‘Disobedient Object’ exhibition, see here: http://www.vam.ac.uk/content/exhibitions/disobedient-objects/