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. 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 can say he is 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 many 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
You may also enjoy these similar and related articles:
Things not to say to a cancer patient – click here
Shame on you! – click here
I look well but you should see my insides – click here
Things are not always how they seem – click here
Not every illness is visible – click here
Not the stereotypical picture of sick – click here
An Ode to Invisible Illness – click here
Poker Face or Cancer Card – click here
I don’t look sick, sorry not sorry – click here
Dear Doctors – there’s no such thing as a good cancer – click here
You must be doing OK; you’ve not had chemotherapy – click here
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10 thoughts on “Things are not always how they seem”
Hi Ronny, once again your words are echoing in my head, as you always seem to express in words how I am feeling. I am in Australia so am not sure where or even if there is NET Patient Foundation card available to me.
On another matter, I was diagnosed in October 2008 and over the years I have been as positive about my situation as I possibly can be. I have never once said ‘why me”, and have accepted my situation as just being human, these things happen. However, as this disease is incurable and it is a lifetime struggle, I am starting to feel the collywobbles. Try as I might, unhappiness is starting to infiltrate me, my coping skills seem to be depleting. I guess by writing this, I am seeking your thoughts on how to continue dealing with everything that is involved in being a NETS patient and asking if there is anyone else out there who is feeling the same. Is it the Sandostatin Lar?. In my case some family members have turned their backs, as I am sure they are also feeling somewhat stressed and confused about my condition.
I sure hope I don’t sound as if I am having a grizzle just seeking support. Merry Christmas to you Ronny and just to let you know ‘WE APPRECIATE YOU! Sue from OZ.
Dear Sue, I think in the first two sentences of your second paragraph, you probably summed up a huge chunk of the NET patient population. However, I think we all go through periods of ‘instability’. These periods can be scary but they tend to subside. That said, it does help talking about it with someone. I can’t help you with the family members except to say that close ones can often be forgotten and may also need someone to talk to. I don’t think the most popular forums are the immediate answer for everyone as some people probably need a professional. Some forums might even make things worse. Here’s a couple of things I often think about when feeling down: I think of all the good things I have and enjoy particularly watching my own family progress grandsons growing up etc; and upcoming holidays. I also often think of how lucky I am not to have had an aggressive cancer as I might not be here at all. These things tend to function as a ‘kick up the arse’ and I soldier on with a smile.😁
Thank you for your kind words and you have a great Christmas too!
[…] Things are not always how they seem March 6, 2015 […]
That’s one of my concerns in the UK, access to loo’s. Do we get assistance where that is concerned, can we get a disabled loo key?
Mostly open Kat but where locked, the key holder isn’t normally far away:mrgreen:
I’ll try get you a NET Patient Foundation card
What an amazingly direct post. Thank you for your willingness to be so forthright to talk about the things that are so embarrassing to some of us. More people need to become aware. You do that by telling it like it is. Thank you,
not me Coral 🙂 – this is a lady who has inflammatory bowel disease (IBD) but I thought it was relevant to NET Cancer (invisible illness).
It is appropriate for many of us…
Reblogged this on Patrícia e Susana.