Letter from America

Letter from America

Awareness, Inspiration, Living with Neuroendocrine Cancer
I've always been one to keep an eye out for the postman (the postie as we say here). Even as a heavy user of computers, I still get excited about receiving 'paper' mail.  Other than birthday cards, I personally don't tend to see many handwritten letters nowadays. In today's internet connected world, handwritten letters are always exciting, always special. However, the one I received in the first week of February 2019 was extra special, it was postmarked from North Carolina USA. Now ….. for those around the same age as me, you might have been attracted by the article header and have remembered the famous radio show entitled "Letter from America".  This was a weekly fifteen minute speech radio series broadcast on BBC Radio 4 and across the world through…
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Neuroendocrine Cancer – is normally slow growing BUT …..

Neuroendocrine Cancer – is normally slow growing BUT …..

Awareness, Living with Neuroendocrine Cancer, Survivorship
I have a lot of be thankful for - I'm still here for starters! BUT ......… here's a list of 10 things I'm NOT thankful to Neuroendocrine Cancer for! Thanks for growing inside me for years before making your vague announcement Sorry too late, I'm metastatic and around 50% of patients will be at diagnosis (so I'm not alone!). It's very SNEAKY! No thanks for making a right mess inside my body! I mean, I look really good, I look really well, but you should see my INSIDES No thanks for generating fibrosis throughout my mesentery and retroperitoneum! I really didn’t know what to make of this issue at diagnosis, although I did know the aorta was pretty important!  Fortunately I had a surgeon who had operated on many NET…
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NET Cancer Blog – Top 6 posts of 2017

NET Cancer Blog – Top 6 posts of 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
These are my top performing posts for 2017 - comprising one eighth of my entire hits for the year.  My blog hits for 2017 almost reached a quarter of a million, double that of 2016 which was double that of 2015.  A chunk of these figures can be attributed to most of these articles.  Please share to maintain the momentum. Top 6 posts for 2017 (Click on each article title to read) Short Description Hits in 2017 The Human Anatomy of Neuroendocrine Cancer Making the point that Neuroendocrine Cancer is not confined to a particular part of the body 9,906 Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis All about syndromes 7,546 Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) The very latest information (particularly about…
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At home with Lanreotide

At home with Lanreotide

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment
  [caption id="attachment_10310" align="aligncenter" width="600"] The Somatuline 'reservoir' forming in the deep subcutaneous tissue[/caption] I think after 105 injections (as at 26th November 2018), I think it's safe to say I'm now 'at home' with Lanreotide (Somatuline Autogel - Somatuline Depot elsewhere). I was fortunate enough to actually have the injection 'at home' via an insurance policy for the first 4 of the years of my treatment.  That was really handy because it was informal, chatty, and I had excellent 'continuity of service' with the same nurse administering 80-85% of those 54 injections.  I only had 3 other nurses over that period covering my local nurse's holiday etc. When I retired from work, I then had to travel to my local hospital and take my turn amongst the 'great unwashed'. …
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Living with Neuroendocrine Cancer – 8 tips for conquering fear

Living with Neuroendocrine Cancer – 8 tips for conquering fear

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
  Opinion: Before I was diagnosed with cancer, my health was in reasonable condition. I had minor irritants that seemed to come back now and then, nothing that was going to kill me. So I just put up with most of it and time was frequently a good healer. Occasionally, I would use medicine to speed up the healing or ask a doctor for advice. Even leading up to my diagnosis, this was my strategy despite some strange things going on.  Luckily for me, the 'system' picked up something suspicious and I am where I am today. It's amazing to think a cancer can grow inside you for years causing a lot of damage but without a grand announcement. Stabilised Following diagnosis, I got quite a lot of attention in…
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Happy Thanksgiving

Happy Thanksgiving

Diet and Nutrition, Living with Neuroendocrine Cancer, Technical NETs
Just a note to say Happy Thanksgiving to my friends in USA or who may be celebrating it elsewhere.  I am so thankful for the support I get from the US who make up the biggest proportion of subscribers to my blog and associated Facebook page.  So I'm thinking of y'all today! Now ........ I hate to stereotype but I guess a lot of you might be eating turkey today?  No Thanksgiving is complete without a turkey at the table (... so I'm told!).  And also a nap right after it’s eaten..... right? As you know I like to analyse such things ...... Apparently, the meat has a bad reputation for making eaters sleepy, but is there really science to back that up?   My google alerts feed increases around this time of…
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Living with NETs – a patients included award winning site

Living with NETs – a patients included award winning site

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
It's no secret that I and other patients (see picture below) have been helping Ipsen Group and their website consultants (Kanga Health) with a new site designed to support and help all Neuroendocrine Tumour patients.  It was subsequently launched on NET Cancer Day 2016 and is very aptly named 'Living with NETs'.  Very pleased to see all this hard work recognised at the 2018 Eye for Pharma awards for the Most Valuable Patient Initiative.  And, this is great awareness for Neuroendocrine Cancer at a major pharma event. I'm also delighted to be speaking alongside Ipsen as the EyeforPharma Patients Summit event in London on Oct 16th 2018. I'm quite excited about this new initiative from Ipsen Group (the manufacturers of Somatuline (Lanreotide)) and not only because I feature on the site…
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“Not the Stereotypical picture of sick”

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
I've never really understood why people get upset or annoyed when someone tells them they look well. Maybe I just think differently than others?  I like to look for the positive things these well-meaning messages can convey.  Most people are just trying to be nice, even if it comes over clumsy. Personally, I love it when people tell me I look well, I mean who wants to look unwell?  If I'm feeling mischievous, I sometimes say "yes..... but you should see my insides".  Most of the time, it dispels any awkwardness and they follow my laughter. Yesterday, I listened to a few video clips of a very inspiring young lady who eloquently delivered her view of what it is like to have an invisible disease and still look the 'perfect picture of health'.  She…
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Neuroendocrine Cancer – not average, just mean

Neuroendocrine Cancer – not average, just mean

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
  [caption id="attachment_9913" align="alignnone" width="506"] incidence rising faster than all other malignant neoplasms[/caption] Most people have perceptions of cancer in their heads, fairly fixed perceptions too.  They think about all the stuff they see daily on TV, in the main press, and people they know.  The big cancers set the scene. Most doctors know about the big cancers.  They also know how to treat them, many of them have a fairly fixed regime of surgery/chemotherapy/radiotherapy.  Many survivors will have side effects of their treatments, e.g.perhaps temporarily losing their hair.  More people are now surviving these cancers and many will be declared disease-free or placed into some sort of remission status (no evidence of disease is a common term I see). Most NETs are not like that!  Whilst it has a reputation…
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Not every illness is visible

Not every illness is visible

Awareness, Living with Neuroendocrine Cancer, Survivorship
I personally don't see myself as 'disabled' but I do have an invisible illness. I'm fit, can walk for miles, I even look quite healthy.  However, I live with the consequences of Neuroendocrine Cancer. These consequences differ from person to person but I know that some people with this disease have even met the criteria to be officially classed as 'disabled' through government schemes.  Judging by what I read, I have less debilitating issues than others, so I feel quite fortunate. That's not to say I don't have any issues at all - because I do! [caption id="attachment_13469" align="aligncenter" width="720"] Situation normal, right? [/caption] I was therefore delighted to see news of an initiative supporting invisible illnesses by Asda (for those outside UK, Asda is a major UK wide supermarket chain).  Asda have now recognised that many conditions can be classed as ‘invisible disabilities’ and…
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Ignore this post about Neuroendocrine Cancer

Ignore this post about Neuroendocrine Cancer

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Technical NETs
When I was diagnosed, I wasn't feeling ill. In hindsight, I now know some of the signs were there, I just put up with them. Neuroendocrine Cancer had laid a trap for me and I fell right into it. You see, Neuroendocrine Cancer can be very quiet and unobtrusive. It also plays the 'long game' and will sometimes take years before it's finally discovered.  It is very very very sneaky. Not satisfied with loitering in your small intestine, appendix, lungs, stomach, pancreas and a host of other places, it wants to reach out to your liver, your lymph nodes, your bones, bung you up with fibrosis, and get into your heart where it can cause the most damage. It will also try to get into your head, metaphorically speaking - however, it will…
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I’m still here

I’m still here

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
NINE years ago. I was diagnosed with metastatic Neuroendocrine Cancer - 26th July 2010.  Until I arrived at my 5th anniversary, I hadn't thought much about how (or if) I should mark these occasions.  I never thought I would dwell on such things as 'Cancerversaries' but I now totally get why many patients and survivors do. There are various types of 'Cancerversary' that for some, could trigger a mix or range of emotions including gratitude, relief and fear of cancer recurrence or growth. These milestones could be the date of a cancer diagnosis, the end of a particular type of treatment (anniversary of surgery etc) or a period since no signs or symptoms of cancer were reported. Everybody will most likely handle it their own way - and that's perfectly understandable. The…
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