This has been some of the most challenging times that I have been through. Some days I wanted to give up and pull the plug, if I was connected to one. However, now that I have been through the operation and am healing I feel that now I can complete the radiation and chemotherapy treatments and hopefully move on to a healthy life and kick this pancreatic cancer.
It was a depressing feeling when I first had a sense from the doctors that it might be a cancerous tumour. This was after a MRI in Gaborone, Botswana, Africa. The medical staff told me the MRI doctor will tell me her findings, but when she said I should make an appointment with my GP doctor to hear the results, I knew that something was up. There was previously some casual talk of a tumour, based on an ultrasound, but the MRI needed to confirm this. I remember sitting outside the MRI office waiting for my taxi that took an extra long to arrive. It was very hot out and sitting in some shade I had a lot of time to think. Perceiving that something was not right and was most likely cancer, I wondered what would happen, what the treatment be and, feeling vulnerable, if it would hurt. I also worried about how it would affect my relationship with my wife, how this would unfold and where the future would lay.
At this time the blockage was causing me considerable pain and heavy lethargy, which at this point had been for the last two months (mid Sept to mid Oct). I was very jaundice and did not have the energy for any simple activity. Due to the blockage neither the bile or digestive enzymes could flow and these were being dangerously absorbed into the bloodstream, which my GP was worried could put me into a coma. After seeing my GP, who confirmed there was a tumour, she referred me to a gastro-ontologist (a stomach specialist), to investigate the type of tumour, which was still not confirmed as cancer. I was hoping that the Specialist could tell me that it was benign, but after seeing the MRI images he suspected it was a cancerous tumour and advised not to waste anymore time and fly to Johannesburg, South Africa immediately in order to have an procedure to put in a stent. The stent was needed to open up the blockage that the tumour was causing at the junction of the bile and pancreatic duct in the digestive system. I remember him telling me as we walked out of his office that he hoped that I would not need a 'Whipples' operation, which would be very hard on my system.
This all started out with sever stomach cramps in late September of 2010. Although I was not vomiting I thought I had a mild case of food poisoning, but my GP suggested that it was salmonella and it would take a week to work its way out of my system. Two weeks later I was still not feeling any better and then Gayle, my wife, noticed that I was yellow, which a colleague commented on too. My urine had also turned very dark so I knew I had to go see the GP again. After seeing her, she adjusted her diagnosis to Hepatitis and had me do some blood work to confirm which hepatitis I had. However, the doctor assured me that with rest and proper eating I would get better in a few weeks.
However, by late November I was feeling much worse and had turned a more vibrant yellow. I was also concerned as the numerous blood work I had done for hepatitis had all came back as negative. It seemed to my doctor that I had a rare form of gastro hepatitis. She recommended an ultrasound and MRI, to see if there were any blockages and then go to the gastro-ontologist. I remember mentioning to her that if this might be caused by cancer. Usually I am not that pessimistic but I had an instinct that it might be so. She discounted this theory based on that the pain came right away and was not a slow build up, usually associated with cancer.
The pain and weakness prevented me from doing my volunteer work since September. I came to Botswana to work with Uniterra/World University Service of Canada to do video production. I was creating supportive video projects for HIV and AIDS organizations that the Canadians are involved in. HIV and AIDS is still a major and devastatingly problem here and 1 in 4 people are infected with the virus. My wife came to Botswana a few months earlier to work for the Southern African Development Community on gender equality and women's empowerment programming. She did not want to take a year contract without me being with her so we agreed to go into this adventure together. I wrapped up my Canadian video projects and was happy to make my way to Africa. This was very fulfilling work. Uniterra in Botswana had never had a video production person in their support team so I had cart-blanch with the video direction. I learned so much about HIV and AIDS issues and was able to create some informative videos. It is ironic that I came to Africa to work on health issues and then I became a major health liability.
After a few months of pain and extreme loss of body weight I was very relieved to go to Johannesburg to get a diagnosis, treatment and have the tumour removed. Still not knowing if it was cancer or not I put my trust in the doctors to deal with me and correctly diagnose the issue. When I arrived at the Donald Gordon Medical Clinic (a private hospital), the recommended physician, Dr. C. Joseph immediately put me at ease with his intelligence and kind demeanour. I felt safe and believed everything would work out fine. I had a very nice room, with some lovely sisters (nurses) providing attentive care.
Dr. Joseph explained that it would be a two part procedure; first, to insert a stent to unblock the growth and secondly, to remove the tumour. After the operation to insert the stent in the blockage, in order to open up the duct, I woke up feeling great relief for the first time in months (albeit with a sore throat since they do the operation via a tube through the mouth). However, the day after I was back to misery. Dr. Joseph was stunned, he said that usually once the stent is inserted I should return to feeling healthy. The stent creates an opening and allows the bile, which was causing high bilirubin levels and extreme jaundice, to drop. Dangerously high levels of bilirubin can work its way to the brain and cause a coma. The normal level is 20 – 30. Throughout my one month stay in the hospital my bilirubin levels were very high, at the highest point it was 500, the highest the doctor has ever seen. Dr. Joesph could not remove the tumour until I was able to gain some weight and have the bilirubin levels at a controllable level.
My weight loss was partly due to not eating. Food in general was causing me great irritation. The mere sight and smell of almost anything edible was very upsetting. The hospital called in dieticians and even the hospital cooking staff to see if there was anything that they could make that I was able to eat. Even with their help and special meals, still not much was going down and I had to rely on nutritional protein drinks for most of my stay in the hospital.
After a few more days there was no improvement with the stent and Dr. Joseph performed another operation to put in a larger stent. Unfortunately, this second stent did not work either. The bilirubin levels were getting even higher and my weight loss continued. I started to feel very itchy and could not help scratching. I was so uncomfortable and sweating profusely. The doctors were worried this might happen. The bilirubin was now working its way into the brain. The itching was a symptom of this. During the worst time of itchiness, which lasted up to almost two weeks, I felt like I just wanted to jump out of a window. It was an uncontrollable itch, it was hard to ignore. It was hard to go sleep. When there was no visual stimulation (TV) to take my mind off of things, the itch would intensify. The only thing that helped was the doctor's explanation that it is purely psychological and that there was nothing on my skin that was causing the itch. I would tell myself that “no matter how much I scratched there would be no relief so don't even start.”
It became a daily routine to have blood work done to see if the bilirubin levels were coming down. I felt like a pin cushion with all the needles, plus anti-coagulation needles directly in the stomach, which felt like bee stings. Sadly, the bilirubin levels were still high. The doctors were dumbfounded. They did another internal scope and saw that the second larger stent had become blocked. They discovered that the tumour was soft and had collapsed around the stent, which created a block. So I needed to have a third operation. They put me under again and added a second stent, one inside the other. This finally seemed to allow the bile to properly flow, but with continued weight loss and the bilirubin levels still too high, they could not yet operate to remove the tumour. It was a waiting game.
During the initial operations Dr. Joseph did some 'scrapings' around the tumour while inserting the stent. The biopsy still could not confirm if the tumour was malignant or not, but it did conclude that I would have to do the 'Whipples' operation. This is a very invasive procedure that lasts seven hours. The 'Whipples' is an old procedure from the 1940's. It is well established, tried and true, but very hard on the body. The surgeon removes part of the stomach and pancreas, completely removes the gallbladder and duodenum, plus any of the lymph nodes in the abdomen area. They tighten up the digestive track, food then 'dumps' directly into the stomach. There is now no controlled release of the digestive enzymes, and all food must be combined with some proteins, even drinks, to aid in food absorption and digestion.
A couple of days after the third operation I started to cough up blood. It lasted for four days and really was an incredibly scary experience. After three weeks in the hospital, three operations (two unsuccessful) and feeling tired, itchy and weak, all I wanted was to feel good and see some improvements. Coughing up blood really took a physical and emotional toll. Plus, the first night of coughing up blood had me transferred to a very uncomfortable night in the 'High Care' unit (half jokingly I renamed it 'Hell Care'), which I felt set me back in recovery. I mentioned this to my doctor and he understood when I said you felt more like a statistic than a patient there but this is what they are good at, monitoring your vital signs and not listening to your moaning and groaning. Coughing also led to more x-rays and tests but no clear explanation. The doctor thought maybe, based on the symptoms, it was tuberculosis, since I was around TB patients doing a video for Uniterra. He said this would explain the continued weight loss, sweating and coughing up blood. He told me that he never wished TB on anyone but was hoping that this could be it, since he could then have a solid diagnosis and start treating it, as TB is curable. If it was not, he was worried that the possible cancer was complicating things. At the time it was actually a disappointment to get back all negative TB test results; we all felt at a loss. However, thankfully the coughing up blood had stopped.
Dr. Joseph wanted to get other professional opinions on my condition so he organized another scope to view the tumour. This was a video scope that could view with great clarity. I was brought down to the theatre and was greeted by five doctors. I did not know at the time that they were all there for me. After the viewing Doctor Joseph said they all agreed that the tumour did look cancerous but was still not hundred percent sure what type or how aggressive it was. At least I knew for sure what I was dreading, this actually brought some relief but now brought other variables to the table.
Another part of this journey was seeing myself in the mirror. With losing almost a third of my body weight I was very skinny and weak. I started to look and feel very old and resemble my parents during their vulnerable period just before they both died. This freighted me a lot. Seeing my Dad in me when he was so fragile brought me back to those sad times as well made me think that maybe I was also close to dying. The skinny arms and legs with loose skin, the sunken cheeks, the frail stature, and even certain body gestures were similar to my Father. I would see his face in my reflection and it was hard to escape these mournful memories. My Mother died of liver cancer just before my Dad died and her symptoms also had similarities to mine. I could not run away from the painful loss of my parents even far away in Africa.
Next, we just had to wait to see if the bilirubin levels would come down. After a third week in the hospital, the levels were starting to slowly fall and this brought great relief. The itching subsided. I was still so yellow, almost a fluorescent yellow, glowing. But with the bilirubin levels slowly dropping there was not much more the hospital could do for me until I gained strength and weight. So I was released, after a month in the ward, so I could go back to Gaborone, Botswana during the Christmas holidays to monitor the bilirubin levels, hope for its continued decrease, and put on some holiday pounds.
The next three weeks out of the hospital, and being back at home, were wonderful times. The hospital did everything to make my stay and healing comfortable and possible, but 'real' improvement I feel takes place outside of those institutions. Food started to agree with me and I turned into an eating machine. I started reading cookbooks like novels, every morning I would wake up and start to look up recipes and plan the meals or just imagine the tastes that those culinary texts would suggest. I was so fixated on eating that I put on quite a few, much needed, pounds. I was able to get some exercise too, doing some gardening in December and January. Christmas was fun too in a hot climate, swimming outside with an inflatable Christmas tree floating in the pool was a surreal and enchanting experience for a Canadian. But I missed my family and friends back in Canada, wishing to receive their comfort. I also started to romanticize the Canadian winters.
We returned to Johannesburg for the Whipples operation on January 17th. Laying down on the hospital bed I looked at my stomach and saw it for the last time not scarred. Gayle and I even took a picture of if pre-operation while waiting for the doctors to come in and administer the first of the drugs to put me under. The doctors came and explained the pros and cons of certain anaesthesiology drugs and procedures. I was a little confused and just did not want to feel pain. They reassured me that I would feel nothing during the procedure but it would not be pleasant afterwards. Being informed that usually in a hospital theatre is one of the safest places in the world, but with this operation it was safer to be in a car, was a little unsettling. It was going to be a long (7 hours of cutting) and very hard on the body. I was in a solemn mood and squeezed Gayle's hand before they wheeled me away from her.
I had to sit up straight to get the epidermal and as they pushed the needle in my back I felt the pain they told me about, sharp pains in my legs and lower back. I sat there unemotional while they readied the room, putting out the tools that were wrapped in green cloth and stainless steel containers. Looking around I could see all the monitoring and life support equipment, knowing that I will be the focus in that room and wondered how did I get to this point, it all seemed so strange but very real.
I felt the coolness of the drug, that knocks you out, go into my left arm's vein. It took only seconds for the effect to work. I consciously studied the time from the first moments of its administration to every second that I was aware of time, then, the next cognisant instant was being in the intensive care unit with the doctors all around me. They told me everything went well and was now the time to rest and recover. I slowly moved my eyes and then my head to look around and saw the business of the ward, the blinking lights, the tubes and wires running from my body to machines, the other beds with patients, and the hovering staff. It was also very noisy, with bells and beeps constantly going off, and even the laughter from the sisters as they provided the care. But I could not ignore the pain in my body. Every movement seemed to pull on a stomach muscle, every moment demanded a lot of strength, which I did not yet have. All I could do was quietly call out for a sip of water to wet my dry mouth.
I had numerous tubes coming out of my body; two from my stomach, two down my nose, one in my arm, one in the neck, one in the back, one in my hand, catheter, oxygen tubes, blood pressure cuffs (that automatically inflates every half hour or so, and felt very irritating) and many wires hooked up to vital statistic monitors. These all controlled my bodily functions and pain management. All I had to do was sit there. No need to eat or visit the washroom. The sisters were there for me, twenty-four hours a day. If I was in pain they would up the dose, if I was tired but could not sleep, they could give me something for that. If I needed ice to help keep the mouth moist, they would bring it. They responded to all inquirers. Sometimes I felt guilty asking them for support but they were always willing to accommodate my needs. They would bath me, which was a very odd feeling since it felt like I was a baby again. It took them at least a half an hour for them to untangle tubes and undo wires and cap off the IV when I needed to sit in a nearby chair. The doctors highly recommend sitting up and not staying lying in bed since this could cause a clasped lung, which leads to pneumonia. But not having the strength and feeling very sore, even with all the pain killers, it was so very hard moving from the bed to the chair. I would with the assistance of the sisters attempt one way to get up and have to give up. I would catch my breath and try another method. Finally, after withstanding the pain, I would be on my feet but would have to plop down on the chair full of pillows. It did feel good to be in another position but after awhile that position was uncomfortable. Then I would ask the sisters to help me move back to the bed, which took another half an hour.
I had daily tasks to help me get stronger. The ICU doctors asked me to blow into a device to help exercise the lungs and prevent them from collapsing. I could not even cough let alone blow. The muscle strength was not there, but I tried. There was also a physiotherapist who came immediately when I was sitting in the chair to move my legs and arms. It was like learning how to do everything again. Mentally and physically it was hard to keep focused and positive. The pain and weakness seemed to take over all my thoughts.
A day after the operation, towards evening, I started to feel unwell. I complained about stomach pains. They increased my morphine which helped but soon the pain was back. I complained again and got another shot. Before long I felt nauseous, they gave me something for that. It subsided then my mouth was salivating profusely again and they gave me more stuff for nausea. The medications did not seem like they were taking affect anymore and the pain was mounting. Again I complained. I asked to see the Head ICU Doctor. It took some time for him to come after doing his rounds. I remember calling out 'help' before he came. It was really agonizing. When he did see me, he read my vital statistics, and saw that something major was going on. My blood pressure was very low, my heart rate was high and I was extremely pale. He said we would have to open me up again and do some emergency surgery. I did not feel any relief from this news. All I could think of was how painful it all was. The doctor said he would call Dr. Joseph to come in and do the operation. I asked how long it would take since I could not take much more pain. He said he should be there within ten minutes. This was around eleven p.m. and when Dr. Joseph arrived he told me that the operating theatre was getting prepped but we would need the Anaesthesiologist and he would take twenty minutes to arrive. I begged him if there was someone else we could use and he assured me there was not. I looked into Dr. Joseph eyes and got him to promise to help me. Every minute the pain was getting stronger. I could not imagine that I could wait another twenty minutes. Tears were in my eyes, I felt like I could pass out from the pain. The sisters were all undoing the wires and tubes preparing me for the theatre. There was lots of attention around my bed but none of it seemed to help the pain.
I was being wheeled into the theatre when Dr. Gordon, the Anaesthesiologist, arrived. He had to tell me what he was going to do but all I could say to him was to put me under as soon as he can. Then the moment came when I woke up in the ICU ward two and half hours later. Dr. Gordon and Dr. Joseph were there telling me that a blood vessel had detached in my stomach area and was bleeding internally. It was hard to comprehend, I was still drowsy and worn out from the evening, but I felt calm now, and just wanted to rest. The sister that was looking after me took over and started to clean me up. There was still blood all over my body. She spent another three hours cleaning me up and then she put fresh linen on the bed. I was a bit nervous of being moved onto my side since it usually caused great pain, but she said not to worry with all the pain medication put in me. When her shift ended another sister took over and noticed that I still had some blood by my eyes, I can not imagine what it was like to operate on a detached blood vessel.
I spent ten days in the ICU ward and got used to sleeping at a forty-five degree angle and with all the noise and bright lights. There were seven beds in the front area, where I was but more rooms in the back. We as patients could not get up and talk to one another since we were tied to all the machines around the beds. I would look at them and wonder what they were in for and how they were doing. Sometimes you would use hand gestures to ask for the time, if someone could see a clock, or ask if they were feeling good that day. Mainly you were counting down the time for visiting hours, which were really limited in the ICU ward; only three one hour slots a day. This was really hard on Gayle. She would be waiting on the other side of the wall for the appointed hour to only get an hour visit, then wait a few more hours for the next visit. When Gayle left I felt really alone. We would try to make the most of the visit but it would go very fast. She would bring in her laptop and read me some well wishes from emails and facebook messages. This really brought solace to me. When Gayle mentioned someone's name I would picture their face and listen to their words. I was transported to a tranquil place during her visits. Sometimes I would negotiate with the sister if Gayle could stay a bit longer. Some would be ok with this, and some were strict with the rules, “You have two minutes left.”
As the days went by in the ICU, I was starting to become more mobile. I would take a slow walk to the washroom just to sit and escape the noise and action. Closing the door gave me great reprieve. I could breath deeply and put a lot of unsettling feelings out of my mind. Then I would feel guilty about hogging the bathroom and would push my portable IV unit back to my bed, nodding to some of the other patients.
The ICU experience was a bit like reality TV. You saw when the other patients were not doing well and would find out about their condition. Although they would usually pull the curtains closed for privacy I knew when things were good or bad. There was a very nice man beside me. I found out he had the same operation as me. His family was allowed to come in for longer periods and they would pray for him. When I first arrived he was there and was able to get around but day after day he became weaker and finally bedridden. Then came the time they removed him and my doctor privately told me, when I asked, that he was not going to make it. Another very nice man across from me was supposed to have the Whipples operation, and sadly, they were not able to do it. They opened him up and saw that the cancer was in an area that could not be removed. The doctors warned me about this happening to me too. They said don't be surprised if you wake up from the operation and find out that they could not do the operation. This was another hazard with the type of cancer I had. After talking with him he said the doctors told him that he could only do chemotherapy and radiation treatments to try and control it but that the results would not be as positive in the long term.
I was transferred to the regular ward and it seemed like heaven. I was so happy to get out of the ICU ward away from the intensity. I had a TV again and two other roommates who turned out to be such interesting and kind individuals. We each consoled each other and had great conversations about many personal subjects. I even learned how the great confusing sports (to us North Americans) of rugby and cricket are played and a bit of their strategy. This helped out a lot since rugby and cricket were always on TV and now I could follow it and even get excited by the play. I still miss my roommate’s company.
Everyday in the ward I would try to get some exercise by walking but I could not go far. I was not able to stand up straight (and still cannot completely, and still very tired). The pain from the wound was continuous but I felt like I was healing and gaining strength. I could even start to eat solid foods again but this was a lengthy process too. I could introduce certain foods bit-by-bit. Things were slowly improving and my wound was healing but the issue was waiting for the pending biopsy report. The wound did get infected from the midnight emergency operation. Dr. Joseph then had to take out some of the staples to release the pressure from the infection, it was not a pretty sight. Once I saw the wound and the staples, which made me look like Frankenstein's brother, I almost vomited. It was such a large cut, going almost across my whole belly. It was red, raw and with the contrast of the metal staples things did not look right. The skin was not even joined evenly, though the doctors said that the skin is elastic and will be fine. They were right and the wound does not scare me like it used to and is healing well.
I was released from the hospital on January 28th and then spent two weeks at a Bed and Breakfast in Johannesburg with Gayle to make sure the recovery was fine before flying back to Gaborone. Midway through this time I had an appointment with Dr. Joseph and he told me the bad news from the biopsy report. The cancer was a much more aggressive pancreatic cancer than first diagnosed. It had spread to a lymph node so as a precautionary measure he said that I would have to do chemotherapy once a week for six months to resolve the issue. When we met up with the Oncologist the following week, to organize the administering of the chemo treatments, he read the reports then stated that the cancer is most likely still in my system. He said that in South Africa that they usually don't recommend radiation treatment as often as in North America but that in my case he strongly recommended radiation. When I heard this news I just wanted to cry. I have so many images in my mind relating to so many stories I heard about radiation. I was confused of where to get the treatment. I did not want the five week radiation (five times a week) with a very uncomfortable regiment in a lonely place such as in Johannesburg. Gayle and I decided that it would be best to be in a comfortable environment with family and friends, so we made arrangements to come back to Canada for a couple of months.
I am a bit scared but ok with things. The Oncologist stated that with this type of cancer and operation only five percent of people do well and survive. He said that I am a part of that percentage so far, and I should feel very lucky. I do feel lucky and with the support of friends and family the luck is getting stronger.