It’s amazing to think that one minute I’m back from a holiday in the Caribbean and the next minute I’m being told the inside of my body is a ‘train crash’. Just how does that work? In July 2010, I said to the Gastroenterologist investigating my low hemoglobin “I’m not even feeling ill”. He sent me to an Oncologist who then told me that without treatment, the prognosis wasn’t good (i.e. I would eventually die). I also told him I wasn’t feeling ill ….as if my protest was somehow going to reverse the situation!
The term ‘silent cancer’ was apt in my case…….. or was it my stiff upper lip?
- 20 months prior I had a colonoscopy after a short-term change of stool colour. Nothing found.
- I also had some very infrequent bouts of diarrhea – I don’t normally get diarrhea so it must be something I’d eaten……… I carried on.
- I started experiencing ‘flushing’ sensations (hot but dry) some 6-9 months prior to diagnosis – Despite this being very strange, I kept this to myself and ……..I carried on.
- I was exhausted – I blamed it on my appetite for work……..I carried on.
Boy, am I now in tune with my body! If you think something is wrong and it just isn’t normal, follow your gut instinct, see someone, see that someone again and then see someone else if necessary. Keep a detailed diary of your symptoms, do your homework and let the medical practitioner know everything. This is the least you can do. This is also extremely relevant after diagnosis.
Doctors don’t have a cure for your “stiff upper lip”, there is no prescription. Only YOU can take action. Now go see that doctor or at least talk to someone.
Procrastination, aided and abetted by your ‘stiff upper lip’ – it’s a killer.
You may also enjoy my blog Poker Face or Cancer Card
Thanks for reading
Ronny Allan
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You really touched on a hot topic with me. 12 years ago, diagnosed with ‘stress’, having what I called ‘stomach attacks’, Today, I know they were actually bowel blockages. Was told by close friends back then to change doctors. I didn’t. Became very good at handling the blockages myself, going through a night of intense pain.. and then so weak and physically worn out the next day. And this went on…….You know the rest of the story…..thank you Ronny Allan. I so enjoy your posts and I continue to learn from you. This is really a complicated disease.
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Living in the UK I find that I have to chase up virtually every appointment for scans etc. Test results go missing, injections not been ordered. Don’t know if I’m just unlucky and i know the NHS is struggling but I am getting fed up of it. I have been waiting for nearly 3 months now to see a thyroid specialist after an inconclusive biopsy. My oncologist is great but not a specialist in NET and relies on advice himself.
sorry to hear, I suspect you have two main choices, 1. Move to a NET specialist centre and I understand for some this is an additional set of logistics that might prove difficult. 2. You need to advocate for yourself in a more robust way. If 2 doesn’t work, then you have to reconsider 1. I’m lucky that I come under a NET centre and I deal with a specialist Nurse who lets us know to pass any of these problems to him and he fixes.
Ronny, for the first time I find myself a tad confused by one of your posts. I assume you are referring back to when you were first diagnosed and that the story you tell here was not a recent occurrence? Correct? That’s what it sounds like but I just want to be sure there is no new cause for concern.
Yes Nancy, this is a story about my the period leading up to my diagnosis. However, I maintain this is equally good advice for anyone living with cancer.
Thanks for chipping in, I’ll review words to ensure that is more clear.
Understood, and I agree about the advice. I was just a bit worried about you there for a moment!
I am glad to hear it was not new bad news!
I too kick myself for procrastinating; for not pushing harder for reasons for my symptoms, for making excuses like my diarrhea must be caused by stress or anxiety. Your advice is right on, Ronny!
Totally agree!
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Totally agree! If you don’t get help or satisfaction, SOON, from your doctor, move on!!! For 2 1/2 years I complained of – weird pain…(basic conversation between my doc and I). “you have fibromyalgia”. TAKE A PILL – My lower back and hips hurt, my joints hurt, – “you’re older now, you have arthritis”. TAKE A PILL! – I have these hot flashes that make me feel like I am going to self combust! – “You’re menopausal”. – “IVE BEEN OVER THAT FOR 6 YEARS!!!” – TAKE A PILL. – I’m very depressed, moody, irrational, I feel like I’m going crazy! “You’re a women, going through the change”. TAKE A PILL! All I was, was an old arthritic, menopausal women to this man. I went to a Female doc finally (DONT PROCRASTINATE). Immediately she found, a tumor in my L3, uncountable tumors in my liver, small intestine, and peritoneum. And 2 questionable lesions on the pancreas. That was 3-3-2014. She said I had 6 months….. Well, I’m doing fine! Seek out a specialist and eat healthy to build your immune system! PLEASE DONT PROCRASTINATE!!
Particularly for women between the ages of 40-60, if you have flushing (hot but dry), it can be mistaken for a hot flash (hot but wet). If you think it is flushing, mention it to your doctor. A lot of women get misdiagnosed because they think their flushing is menopausal.
Cheers Beth, flushing is indeed a CARDINAL sign.
Dear Ronny,
How true! I had a right hemicolectomy and liver resection for a midgut carcinoid 5 years ago. All scans clear since. About 3 months ago, diarrhoea started getting slightly worse and I suspected I had some very mild flushing. A 24 hour urine test was only slightly raised but still had annual CT scan brought forward. Revealed a new tumour in the liver. Bad news but hopefully caught early enough to enable another operation. Keep up the good work.
Good luck Mike!