Ronny was diagnosed with Metastatic Neuroendocrine Cancer in July 2010 after presenting with weight loss, iron deficiency anaemia and facial flushing (Carcinoid Syndrome).
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 my own type of Cancer - Neuroendocrine Tumours. I suspect the same for other cancers and 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 symptons 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 Cancer patients. I'm in reasonable condition considering the extent of my disease and my subequent 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, down town or anywhere where toilets are not in abundance. Read more about my own experience in the Macmillan blog area.
Long flights are one of the few times I take Loperamide (Imodium). For long drives and trips down 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 also noticed today that Macmillan have now produced a Toilet card which might be handy and one is now on order! click here for further detail.
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 many Cancer patients. 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'. Read a newspaper article containing the letter here CLICK HERE TO READ
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Oh the toilet! The grand old throne, where I have spent many an unhappy hour!! Following radiation treatment to the pelvic area, your bowels are never quite the same again. I have come out better than some who after pelvic RT suffer terrible bowel issues. Some unable to even leave their house. I lead a very outdoorsey life, so am thankful that with careful meal and eating planning times, generally everything is ok :-) But as you say, the problem is 'invisible' and when I am suffering colon pain and cramps, no one really knows. They think it is just a bit of trapped wind! I wish!! Just before my diagnosis we had a new bathroom and downstairs cloakroom put in. This was fortunate as during the following months I spent an unhealthy amount of time in both of them. At least the freshly decorated rooms gave me something nice to look at :-))
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