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

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

Clinical Trials
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 I’m also active on Facebook. Like my page for even more news. I’m also…
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How to Talk to a Cancer Patient Without Being a Complete Twit

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

General, Humour, Living with Neuroendocrine Cancer, Patient Advocacy
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.…
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Neuroendocrine Neoplasms – Can they be cured?

Neuroendocrine Neoplasms – Can they be cured?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
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'm not taking any sides by using this statement, just stating what actually happens and the deeply held views that persist in community held groups. One important factor in some of this thinking is that many people still remember the days where most diagnoses were late and many followed years of misdiagnoses for other conditions. But the latest statistics (which are now quite old) indicate things are changing. The massive increase in incidence rates indicates earlier diagnoses and it's true for many cancers, including…
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The trouble with the NET (Part 3) – Miracle Cures

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

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
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…
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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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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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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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Cancer doesn’t take holidays (but I do)

Cancer doesn’t take holidays (but I do)

Inspiration, Living with Neuroendocrine Cancer
[caption id="attachment_2911" align="alignleft" width="300"] Mt Jacinto near Palm Springs[/caption] After diagnosis in July 2010, with the exception of a planned holiday to Turkey prior to my 'big surgery', 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. 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. We stuck to Europe over the period 2012-2014. However, in 2015, I was getting more confident and managed to get back to one of my all time favourite places - California.  A total round trip of 21…
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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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Disobedient Objects

General
[caption id="attachment_2510" align="alignleft" width="300"] Disobedient Object[/caption] 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…
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