The Journey to Cancer Diagnosis

My own diagnosis is my first real experience of cancer. I have previously had an aunt who passed away from cancer and have had a close friend who went through chemotherapy for a relatively benign cancer and was completely cured around twelve years ago. Five weeks ago, at the age of 39, after months of illness that I had incorrectly assumed had come to an end, I was diagnosed with terminal pancreatic cancer. After my initial diagnosis it had been assumed and hoped that an operation called a whipples could have potentially cured me of the cancer (an operation itself with a 10% chance of mortality), though pre-operation exploration led to the discovery that the cancer had already spread to my liver and hence an operation would serve no purpose. The only course of action is palliative chemotherapy, which I began within seven days. It is now hoped that chemotherapy can keep me alive long enough for a new therapy to come along that may be able to prlong my life further than my assumed prognosis. My diagnosis is metastatic adenocarcinoma pancreas. My prognosis is "a couple of years". Unless a cure comes along, the medical professionals under whose excellent care I am believe this cancer will kill me as there is currently no cure for this form of cancer.

I first became ill in early March this year (2015). I had ongoing issues with night time indigestion for the best part of a decade, though it had always manifested itself as burning sensation - never reflux. In February, I had my first experience of reflux, where I woke in the night with my mouth full of fluid (though not vomit) which had come from my stomach. In early March I woke choking in the night having had the same thing happen though as I had not awoken I had inhaled - or aspirated - the fluid, which I could tell from the acidic burning sensation from my lungs. These two incidents were the first sign to me, looking back, of what my body was going through.

Within days I developed a ferocious itch from head to toe with no indication of cause nor any sort of rash beyond sores which developed due to my constant scratching. At the same time I developed stomach cramps, though at this stage they were quite mild and frequent diarrheoa. The main focus for me and my GP was the itching. I was away with business for a week during this early stage so I had the symptoms for three weeks before I was prescribed steroids to attend to the itch to allow it to settle the itching. The steroids had the added effect of also masking the pain in my stomach. I realised this when on two occasions I neglected to take my morning dose and had to return home from work during my lunch break to get my medication due to stomach pain. Early during this time my urine become dark brown and my feces took on a grey clay colour.

My GP saw no link between the symptoms I was having, whereas early in the process my own research led to link between all my symptoms being pancreatic cancer, which was dismissed by everyone to whom I related this information.

After two weeks, I stopped taking the steroids and within days the pain in my abdomen had become unbearable. My GP thought it may be an ulcer and sent me for the test for h-pylori to see if I had any sign of bacterial infection in my stomach. The initial blood test showed positive for h-pylori so he began me on antibiotics to save time rather than going with the required fecal test, which is normal to 100% diagnose h-pylori presence. The pain increased over the coming days and I returned to my GP for further advice of which he had none.

After two further days of pain, my wife insisted I present myself at emergency. When I described my pain and symptoms the ED doctor immediately suggested it may be gall stones and that though I was not yellow of skin or of eye that I was very severly jaundice. The blood tests confirmed this and though no gall stones were visible on the ultrasound I was admitted to a surgical ward where the surgeon also diagnosed pancreatitis as the source of the pain. Having had a friend who previously suffered from necrotising pancreatitis, this made me rather fear for my outlook and health in general.

A gastroscopy was scheduled to review the common shared duct between the gall bladder and pancreas and an ERCP was suggested, which is a procedure where a balloon is inserted into the gall bladder, inflated then retracted in the hopes that any stones, partial stones or sludge (which coagulates to form stones) will be removed in the process. They also decided to place a plastic stent in the duct to ensure it would remain sufficiently open to allow any further stones which formed to pass through.

They conducted the procedure and unfortunately for me did not use sufficient sedative (it was waking sedation rather than full general anaethestic), which meant I was fully awake, aware, lucid and conscious during the procedure, which as a result was traumatic, harrowing, agonising and terrifying.

After almost a week in hospital and having undergone the procedure I was discharged. Over the coming weeks my condition worsened with energy levels dropping, and pain increasing - especially after meals. My bloods were monitored during the next ten days and even though all of the levels which indicated my pancreas and liver were still malfunctioning continued to increase my GP once again said I did not require a trip to hospital unless I became dehydrated. After ten days I readmitted myself to ED and they could not believe given my blood results that my GP had not suggested I admit myself much earlier. Another ERCP was performed, though I insisted I would not allow any procedure to start until I had been sedated to the point where I was unresponsive and therefore would not have a repeat of my previous trauma. Another stent was placed in my pancreatic rather than bile duct.

Once I recovered from this procedure my condition improved dramatically and quickly. I still had occasional stomach pain if I ate certain types of food, though on the whole I felt much better. As a precaution I was scheduled for an operation to remove my gall bladder to ensure I would not have further issues with either gall stones or pancreatitis which everyone felt tended to worsen with each recurance.

By late May after many admissions to hospital I considered myself over the worst of it and waiting for a minor operation to remove my gall bladder. When I met initially with the surgeon who was to perform the operation, he was keen that just to make 100% sure we were dealing with gall stones and nothing else, wanted me to undergo an endoscopic ultrasound (EUS) procedure, for which I needed to travel to another city. This was purely a formaility, though they had to be 100% there was nothing more sinister at play as the second ERCP/gastroscopy had revealed a stricture, meaning my pancreatic duct was inflamed causing it to constrict and hence compress the internal structure of the duct. This was thought to be highly irregular and was concerning everyone.

Interesingly, the next day I ended up seeing a completely different surgeon for an appointment that had been setup way back when my illness started in March. This was with a view to seeing if I needed an endoscopy to view my stomach and potentialy hunt for ulcers. I attended the meeting anyway and his take was that gall stones would not cause itching and he believed something more sinister was at play.

From that moment on I was convinced that I had cancer, though having done no research (I do not believe the Internet is your friend when researching these things - though it and I had been right about my own diagnosis months before anyone else) I obviously had no idea how serious pancreatic cancer could be. I joked that I was in the Copenhagan interpretation of quamtum mechanical superposition of both having and not having cancer until the results of the EUS came through.

After waking form the EUS, the surgeoun told me that he had found a mass and had taken a needle biopsy of the mass. He said that regardless of whether it was cancer or not, the mass needed to be removed and I would more than likely require a whipples and/or chemotherapy. In shock I had the horrible experience of having to ask the surgeon to relay this information to my wife while I heard her become more and more upset on the phone. It was horrible. Even then, I had not grasped the gravity of my situation.

From then, we were in limbo. I returned to my home town that day after the procedure (a Friday). That afternoon I had severe abdominal pain. The next morning I had to admit myself to ED once more. It is a bad sign when the receptionist in the Emergency Department greets you by name on your arrival. The pancreatitis had returned as a result of the EUS procedure I had undergone days before. I required continuous intravenous morphine to stem the pain. I was discharged on Monday evening then returned to work the following day (Tuesday). After my lunch on Wednesday I was once again in so much pain that I was readmitted to hospital and immediately put back on morphine. While the nurses were putting a canula in my arm I missed a call on my phone. It was from my surgeon so I knew the news wasn't good. I was panicked and so upset that I was unable to hear his mobile number on the voice mail and had an agonising hour waiting for the nursing staff in the hospital to find it. When I rang him he told me that the biospy had confirmed cancer. He was on his way to see me.

My wife had arrived by the time the surgeon came and he told me that it was pancreatic cancer and that I would need a whipples. It did not register with me but my wife told me he had said that this type of cancer had a five year life expectancy of 30%. I still do not know if this is after a successful whipples. He told me that he planned to rush me in for a whipples the following Wednesday. Prior to that I needed a laporoscopy to ensure there would be no complications and that surgery was possible.

After a few false starts, I had my laporoscopy on the Saturday. They told me there had been a couple of spots on my liver and though these had been no concern though they had taken a biopsy. There were a few days of limbo while I kept on at people to set meetings to ensure my operation would happen. A meeting was scheduled with my surgeon for the Tuesday afternoon to discuss the operation. At this stage having been initially terrified at the thought of the whipples had fully psyched myself up for it and was no longer even nervous. It was a cure. I wanted the cancer out.

Something in the look on my surgeon's face as he walked us to his office that day let me know the news was not good. Surgery was not possible. The spots on my liver were secondaries of my pancreatitic cancer. Now I had a choice between three options:

1. Do nothing and allow the cancer to kill me.
2. Wait until the cancer made me sick and begin chemo.
3. Begin chemo now, while I was (finally) well in the hopes that I would be stronger for the fight.

I chose the third option. I saw no other genuine choice. I am a husband and father of a two year old son. I have to fight now with everything I have.

I was shocked. My wife was inconsolable. I was numb. Cancer. Incurable. Terminal. Chemo only buys me time. How much time? I did not want to know. Not yet. During a very long discussion between my surgeon, a cancer nurse coordinator and my oncologist I took in very little. I may have asked "am I dying?" to which the answer may have been "not yet". During the discussion the surgeon said, I will prescribe you some antibiotics because you currently have a plastic stent from the EUS / ERCP procesure (which removed the first two and replaced them with another) which as a foreign body may cause infection. He said, look out for rigors, which was overly violent shivering without necessarily developing a temperature. He said to take an antibiotic and rush to ED.

We left. We were numb. We lived close the hospital so we walked home. We thought we needed some time alone to process this so we asked a friend to pick our son up from day care and stay over with her (his first time ever spending a night away from home). As soon as we got him packed off we came back in to the house to light a fire and heat up some dinner. Within ten minutes I was shivering. We thought it was shock. It was rigors. I had to rush to ED. My wife is a nurse and told me I had an epic temperature and heart rate and got a "code 2 in the waiting room" announcement once they took my vitals. I spent the evening and night after this diagnosis drifting in and out of consciousness while my wife sat by my bed. I was admitted to a ward and remained in hospital for two nights before I was given leave to return home for a night.

More than 48 hours after the diagnosis my wife and I finally had time alone together. We made a decision right then. Time is short. We are not going to allow this take over our life. This is going to be just another part of our life. All that is important is family and enjoying the time we have left and creating memories for everyone to carry with them after I die. I was not going to take this lying down but I was also not going to let it beat or consume me. Time is short and I was going to embrace the time I had left.

Oddly, despite the diagnosis and prognosis, I was in a very happy place before this all began and everything that was there to make me happy is all still there now so I am still happy. The first few weeks were very hard. Any thoughts of my son not having his father through all the important and unimportant events in his life were devastating to me. The thought of my wife not having me to love hold, talk to, lean on, rely on and be there for was crushing. It still is. That will never change. However, I am here now. We are all here now. Each day is a new day and another day I am here to be with my family and friends and enjoy life. Despite having terminal cancer, I still feel incredibly lucky that I do not have a cancer that affects my brain, my thoughts, my mobility, (currently) my strength, or my lung capacity. I can still sing at the top of my lungs. I can still play guitar. I can still laugh. I can still eat. I can still throw my boy up on my shoulders. Life is presently incredibly happy for me. The present is all that matters to me now.