Let’s talk about living with NETs

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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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Cancer doesn’t take holidays (but I do)

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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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Shrek and Princess Fiona

Shrek and Fiona
Shrek and Princess Fiona

I was looking through some old photographs and came across this one I thought you guys might like.  It’s pre-diagnosis, 2008 I think. As you can see, despite being an ogre, Shrek is actually quite a handsome chap 🙂 However, more to the point, Princess Fiona is as you would expect, beautiful and radiant. There’s a bit of a story behind this picture as Chris was in fact not very well at the time.

This picture was taken in Anaheim (LA) in Disneyland California in 2008. We were there with Chris’s brother Gerry (a mad ex paratrooper) and his lovely wife Babs.  Poor Chris developed a mild pneumonia on day 1 when we were in San Francisco having been a bit peaky on the plane. Despite a $600 antibiotic ‘shot’ in the ‘jacksie’, she spent the first couple of days in bed and was still not right when we drove from there to Yosemite; and then onto Death Valley and Vegas. She was actually starting to perk up by the time we got to LA but still looked weak and pale. Fortunately the photographer was able to put some colour in her cheeks and as you can also see, was able to put some flesh onto mine 🙂 Joking aside, looking at some of the other pictures from that period, I was certainly a bit ‘chubbier’ in the face than I am now (yes that is me on the left).

We’ve been back to USA 3 times since my diagnosis – can’t let cancer think it’s winning! 

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!

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