In the past 12 months, I’ve read so many stories about the quite natural act of using a toilet (some more repeatable than others), I think if there was a Bachelor of Science degree in Toiletry, I would pass with First Class Honours.
I jest clearly but it’s strange that such a routine activity for most can actually become quite scientific in the world of Neuroendocrine Cancer and other ailments which might be described in some scenarios as invisible illnesses.
I found myself smiling at the fact that flushing is connected with the toilet and a type of red warm feeling in the upper torso – the two main symptoms of the Carcinoid Syndrome associated with the most common type of Neuroendocrine Cancer. “Please flush after use” – erm…yes sure but actually – no thanks 🙂
When I read about some of the issues others deal with, I think I’m one of the luckier Neuroendocrine Cancer patients. I’m in reasonable condition considering the extent of my disease and my subsequent treatment. I put up with a number of irritants but I don’t appear to suffer as much as some. However, one thing that does worry me is the occasional stomach cramp. Hopefully, I’m not tempting fate as they seem to be vastly reduced in the past 6 months. They can sometimes be very painful and debilitating – normally resolved by going to the toilet (and hopefully one is close!). Handy if I’m in the house, not so handy if I’m on a plane, in town or anywhere where toilets are not in abundance. I did write a blog on this subject following a very painful episode on my Hadrian’s Wall adventure – ‘My stomach cramps my style’.
Long flights are one of the few times I take Loperamide (Imodium). For long drives and trips to 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 get a key – again I have no qualms about asking for access despite my outwardly healthy look – nobody has argued yet! If sufficiently urgent, I’m even prepared to ask to use the staff toilets in shops etc. I do have a card in my wallet which I obtained from my friends in the NET Patient Foundation. I’ve not yet had to use it in anger. I also noticed today that Macmillan are now doing something similar – click here.
On the subject of urgent visits to the toilet. I recently wrote a blog about a lady with inflammatory bowel disease (IBD) and I suspect in a worse condition than most Neuroendocrine Cancer patients. 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 and it apparently went viral. Just goes to show that with invisible illnesses ‘Things are not always how they seem‘. The letter is brilliant – READ HERE
For those who are interested, NET Patient Foundation also do a Carcinoid Crisis ‘At Risk’ Emergency Card to keep in your wallet/purse so that doctors can be forwarned of the aversion to anaethestics etc. Mine is in my wallet at all times. Click the link for further information.
Thanks for reading! Please feel free to share.
Thanks for reading
I’m also active on Facebook. Like my page for even more news.