Beating The Unbeaten - Ampullary Cancer by Christina Knudsen
Ampullary cancer (in the family of the pancreatic kind) is a rare form of the disease that is very difficult to treat and with some of the worst survival statistics of any type of cancer. So when I got diagnosed with ampullary cancer four months ago, and my oncologist told me that I may only have two years left, I knew my life as I knew it was over. Forever. The hard part was trying to accept and integrate the new one; a life dictated by an uncontrollable and deathly illness. It was simply too brutal. Now, four months later, I am in a completely different mindset. I have gone through a profound mental and emotional readjustment.
What was strange for me when I realised that I was a cancer victim – something I never in my wildest fantasy had imagined would happen to me – was that it showed no visible or physical manifestations. The only way it had revealed itself was because the tiny cancer tumor had blocked my bile duct and given me jaundice, which disappeared a few days after a stent was put in place with the endoscopy procedure. The problem was the hard-core chemotherapy that made sure I was constantly in and out of hospitals for three months. Now I am on a milder one, one I might be on ‘for life’ according to my oncologist. It’s a predicament I can possibly live with, since I am now no longer confined to a hospital bed and even able to ride my horses.
The unusual aspect of my situation is that I am relatively young, mid-forties, and otherwise very healthy, sporty, have a positive mindset and have no cancer in my DNA. Where the illness originates from is a mystery (I personally believe it is from emotional stress from an unusually challenging childhood) and like many cancers, it seems to have been unprovoked. Unfortunately, we do not yet have a nationwide dataset of patients with ampullary cancer that could be used to cross-reference symptoms and treatments. This would, in my case, be a vital resource. It would not only allow doctors to help pinpoint the cause, but also make an informed decision on my treatment according to what has worked well with other patients who have suffered from the disease and who have similar attributes to me.
That said, the good news is that I have private health insurance, which covers most of my expenses related to the illness and I get to be treated by a top oncologist, Professor Justin Stebbing, who has the best qualifications imaginable. He operates out of a posh Harley Street Clinic, where the chemo sessions seem more bearable I guess. Where I am the real exception to the rule is my ability to independently fund a cutting edge, immunotherapy from the US called Keytruda. This might be the reason why, after four months of intense chemo combined with the immunotherapy, the fiercely aggressive cancer has not progressed. Despite months of looking and feeling terrible, I now look exactly the same as I used to (apart from having lost a little bit of weight). I’ve started jogging again and have just started competing with my horse (I was very surprised to discover that I was able to manage the cross country).
The biggest problem for me on this journey, apart from the pain the illness is causing my family and friends, is the debilitating noise and chaos created by all the supposed alternative therapies one is tempted to believe might be the holy grail of cures. It is very difficult for me to accept that chemo is the only answer, especially with the knowledge that others have had brilliant results with various other treatments. So I am battling with myself daily on the issue of nutrition, for example, though I stick mainly to a diet of no sugar, no dairy, no alcohol and little red meat.
Ultimately, I am getting a feeling that I can turn this into something different. Perhaps I can use the situation in a positive way and be an inspiration to others. There’s no point in just going downhill with it, so I am slowly thinking that I could create a new reality around my predicament. One that would depend on my surviving this as best as possible, and showing the rest of the world that you can go through this and remain strong and positive, perhaps even overcome it. Apparently no one has beaten the particular cancer that I have, so why not try to reverse the statistics and make this into a first?
I have the best possible circumstances around me to conquer this: I have got my oncologist, Justin, behind me. He has found a student who, financed by a very kind friend, is currently studying my particular cancer. This will enable him to understand my case in detail and find more specifically targeted medicines for it. Innovation in cancer medicine is exploding and, with a little luck, better drugs will develop before it is too late. I am still relatively young and fit, and I suppose a survivor in every sense of the word (I went through an eating disorder, then depression and finally psychosis all in my teens). This illness, rather than being a chain and ball around my ankle, is turning my life into a positive quest, one that embraces profound feelings of inspiration, motivation, dedication and ultimately a fierce determination to survive. I have honestly never felt more alive than I do today. One day it would be ideal if everyone else had the same opportunity to feel as lucky in an unlucky situation as I do.