What is the connection, if any, between playing high-level sport and ending up with pancreatic cancer? What is the link, if any, between pancreatic cancer and red wine, or pancreatic cancer and stress, or pancreatic cancer and...
I have many questions (still) about pancreatic cancer. As do we all.
This story will hopefully resonate with anyone whose circumstances resemble mine two-and-a-half years ago when I was diagnosed. Maybe as you read this, you will be prompted to think of a relative or a friend whose circumstances sound similar. An early diagnosis saved my life: it may well save others, too.
Like the other pancreatic cancer survivors whose stories are told here, I am lucky and I know it. But I am also a writer and a public speaker, so I feel an enormous duty of care to spread the word about how you *can* get pancreatic cancer and live, how you *can* get back not just to your former health but perhaps even beyond it to a fitter, stronger state. That, anyway, has been true in my case.
I was diagnosed in one country, operated on in another, and received adjuvant chemotherapy in no fewer than three different countries...so if anyone should have run into complications, it should have been me. But that didn't happen, and throughout the process the Pancreatic Cancer Action Network was tremendously helpful – simply because its unwavering positivism and professionalism made me feel much stronger right from the get-go. Knowledge is power, and I knew from the moment a doctor in an ER in Bosnia suggested that my jaundice was being caused by a growth at the head of my pancreas, thanks to meticulous scanning of resources at www.pancan.org, exactly what the odds were, exactly what would be happening to me next, exactly what Whipple surgery entailed, exactly how important testing of surrounding nodes was, and last but not least, exactly what kind of recovery time I would need. I have been fortunate to escape hospitals for most of my longish life – I was 54 when diagnosed – so, the sense of having ready access to an information flow was invaluable. I could follow everything step-by-step and compare my situation with others.
Clearly I was one of the lucky ones. My tumor made me turn yellow, which meant that a Whipple surgery could be carried out when it was less than 5mm in size. I hadn't understood that I would be required to undergo chemotherapy, irrespective of there being no malignancy whatsoever in a single surrounding node. But hey, "belt and suspenders" made perfect sense, when dealing with the most deadly of all the cancers - right? On the other hand, I could not find then, and still do not see now, too much discussion or information about chemotherapy, about its side-effects and after-effects nor information about post-Whipple nutrition. I did not enjoy chemotherapy – who would? – but since I was receiving only one chemotherapy drug I truly ought to have been one of the less complicated patients to help through the process.
But no one ever asked me how things were going with my digestion. Though not rendered diabetic by the Whipple, I was now without enough of a pancreas left to deliver the much-needed enzymes that oil the wheels of the entire digestive process. The result was that so many things were now totally indigestible that I more or less ate bread-and-cheese and drank beer...for 2 years. Only after two years of dietary misery, and consequent lack of vitality, did my original surgeon happen to see me, listen to my observations about my digestion, and immediately prescribe me enzyme supplements for life. It would have been nice not to have "lost" those two years, now that I know I could instead have been swallowing enzyme pills. It would have aided my resilience during the seven months of chemotherapy, it would have helped keep me strong and vital during the period after chemotherapy ended, which was a distinct low point of the worst sort (physically). It would have helped me continue running, instead of abandoning it because I felt, basically, below par, not myself at all. And all because I was not getting any sort of real nourishment because, without enzymes, even the few foodstuffs I *did* intake were basically just passing through me without leaving any kind of useful impact.
But of course this focus on the absence of any discussion or information around nutrition issues must seem like a massive luxury to anyone who, having been diagnosed with stage IV, is now dealing with life versus death, not trifling problems like not being able to eat certain foods. It's a fair point. But I didn't succumb to pancreatic cancer in the first place, so I certainly am not going to be cowed by "Survivor Guilt" in the second! To the people diagnosed with pancreatic cancer who qualify for Whipple surgery, the whole question of diet might for all I know be THE issue that dictates the speed and trajectory of post-Whipple recovery. The faster you get from Whipple to chemotherapy to normality, the better. But how "normal" can anyone's life be when the variety of what they eat descends to nil, and the quality of what they eat likewise? So I stick to my guns: this is a huge area of concern, so far as I am concerned.
So, what is my message? It is this: early diagnosis saved my life. Developing early detection tests for pancreatic cancer is the only way to spot this early, except for the very lucky few of us whose tumor was at the very head of the pancreas blocking the bile duct, causing jaundice and thereby enabling successful early discovery.
Unlike many of the other survivors, I did not really have any other symptoms. I had back pain, but as an old racket-sports player at a relatively high level, I'd had back pain on and off for decades by then, and so thought very little of it. I had no abdominal pain whatsoever, and was completely puzzled when my doctor asked me to lie on my back while carrying out an ultrasound examination...I'd been expecting to lie on my stomach, to allow access to my back. My gallbladder had swollen to three or four times its normal size and she refused to let me leave the clinic unless I promised to proceed immediately to the nearest ER before it burst.
Which I did. One hour, and one emergency CT scan later, I was being told that – regrettably – it looked as if I'd a classic case of pancreatic cancer, the only imponderable being whether it was going to turn out to be neuroendocrine tumor or the more common pancreatic adenocarcinoma (it was the latter). Given that I am alive and well two-and-a-half years later while alas many of those who have been diagnosed since have, as we all know, not been as fortunate, I feel a strong duty of care toward those other Jeremy Geelans who might turn out to be as lucky as me if only we can make sure that they too, like I was, are diagnosed while the tumor is still at stage 1A.
[diagnosed 14 Feb 2011]