In 2014, 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 was going on inside their heads and bodies.

Visible Illness can have awareness benefits

Conversely in 2018, I was absolutely humbled when I met a Parkinson’s disease patient. I had ‘noticed’ Matt prior to meeting him, mainly because he had difficulty walking. He approached me and said he saw me looking at him.  When he was talking to me, I had to really concentrate because his head, arms and legs were constantly going into spasms. His speech was also affected. Despite his very clear VISIBLE illness, I found him to be a fantastic advocate for Parkinson’s. He told us that he has no issues with people staring or looking at him as he makes his way around and that is his key marketing point – himself. He uses the fact that people notice/look/stare as opportunities to get talking to them and he is a living breathing advert for Parkinson’s. I had no idea Parkinson’s had these effects, I thought it was just the shaking hand thing that you often see on TV programmes.

So, things are sometimes not what they seem with VISIBLE illnesses just as they are with INVISIBLE.

NETs can be invisible before and after diagnosis

I know from reading and participating in NET forums that many patients with my own condition frequently encounter people who clearly do not understand much about the effects of NETs on someone’s body (and mind) and day-to-day living which for many can be described as a struggle.  I read a 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 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“ (sorry, not sorry).

Most NET patients are not subjected to the rigours of chemotherapy and I for one am thankful for that from a personal point of view.  I always felt out of place on the chemo ward when I first attended hospital for my early shots of Lanreotide. However, many NET patients have had some ‘bad ass’ surgeries and many will be treated for the remainder of their life with large anti-tumour and hormone inhibiting injections; and for some perhaps other ‘side effect inducing’ therapy such as PRRT or Everolimus/Sunitinib.  

There is no 5 year or indeed any remission for incurable NET 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 patient who looks well may not be well inside – body and mind!  Nor am I asking for pity – I am, however, asking for understanding.

Below always happens, right?  

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 know are due to the consequences of my cancer treatment rather than 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 since around 2015.  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, downtown, or anywhere where toilets are not in abundance.

I try not to let this problem stop me from 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) but for long drives and trips into 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 have ready in case of opposition (never been challenged yet).

Are you nodding your head at these issues?   I also suspect quite a few of you will therefore enjoy reading an article that 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 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 with credit to Sam Cleasby (So Bad Ass):  CLICK HERE TO READ