For the first few days I was placed in the fabulous new wing of the Trillium hospital because the surgery ward was full. I was actually put in the orthopedic ward because there was no where else for me to go. This was like a spa retreat when compared to the old ward, with nice floor to ceiling windows running the whole length of the room, and a very soothing, calm environment. No noisy nurses' station right outside my room; the new design placed each nurse at their own little alcove in the corridor, where they could do their charting and other admin work in peace and not get sucked into a chinwag. No overhead pages or audible alarms from the patient call buttons; each nurse had a their own cellphone type of thing that was used in place of a PA. The whole design of the place just seemed brighter, lighter and airier and was generally a pleasant place to be. Wow, they have come a long way in hospital design.
On Saturday I had a nice visit with Dale and Maddy; unfortunately we were getting the hang of it. Disgustingly, I had to report all of my bowel movements to the nurse on duty, who had to check them for 'trends'. I was unable to eat or drink anything in case I took a turn for the worse and they changed their mind about doing another surgery.
By Sunday, Father's Day, I had convinced the nurse to contact the on-call physician, who decided that the chance of needing surgery had passed and I could go back on solid food, a little wiser this time and hoping to avoid all that bloating I had had before. But I would stay on some really hard core antibiotics because any feces that escaped my colon into my bloodstream could make me very sick or even kill me. This was serious shit, if you'll pardon the pun. These particular antibiotics were so powerful that they killed off not only unwanted, harmful bacteria in my digestive tract, but basically killed all bacteria, making my resumption of a normal diet that much more, um, unpleasant.
I had gone from being thrilled over little farts to checking to see if the blood I was passing had started to clot. Really having fun now. And if I can tell you one thing dear reader, it's this: Never, ever take your daily normal morning constitutional for granted again. It is a precious gift, and I am most serious.
We had a nice Father's Day party with the family, and later my brother Greg came and spent a few hours watching golf on TV and drinking apple juices with me. In that way of immediate family and especially brothers, we barely spoke the whole time but it was a great comfort to me having him there. Dale and Maddy, and others, would come and fuss over me and make small talk, ask how I was feeling, bring flowers, and all that, which is great of course. Greg and I would just hang, and I needed that. Thanks bro.
Monday marked the first visit from Dr. B, my surgeon, after he returned from vacation and he seemed generally sympathetic that I was back in the hospital. He came and went very quickly but examined me and said that everything was more or less OK but that I would need to remain in the hospital for a few more days at least. Later in the day I would be transferred to the old surgery ward, and into the same room I was in during my first stay. I was not feeling sentimental about this in any way. Monday was also the day I was introduced to my new and life long friend, Metamucil.
On Monday I also made the first mention in my notes of something that would soon overshadow everything else I had experienced up to that point. My diagnosis, the lead up to the surgery and the event itself would seem like a walk in the park by comparison.
I had been feeling quite a few aches and pains all the time since I woke from surgery but I thought these things could be explained by spending so much time in bed. During that second hospital stay I began having really severe pain in my arms and other places on my upper body, along with a loss of sensation in those areas. It was bizarre and frightening, and I mean really painful, like 8 out of 10 pain, where 10 is passing out. Through barely suppressed tears I was pleading with the nurses to get me some pain medication but I wasn't allowed any lest it interfere with my digestion, so it was my old pal Gravol to the rescue again. I tried Advil and a bunch of other non prescription things but nothing helped. The pain would get particularly bad at night when I was laying down, and was so intense that I lack the ability to describe it to you. And the best part? No one could explain why it was happening, or in some cases would not take me seriously. One night nurse, Nurse Smegma, basically ignored my pleas and didn't document my complaints or report them to my doctor.
This experience marked not only a turning point in my recovery, but also in the esteem in which I held the doctors, nurses and the hospital and in a way the current state of our medical system. This will take a fair bit of explaining and is probably best done by compressing the timeline I've been using to tell you my story so far.
I'm going to complain now, but here's what I want you to remember when you read this: I was spared having to undergo chemotherapy and radiation treatment. I didn't even get the worst of it. Right now there are dozens of people going through it or something worse at the hospital near where you live.
After the sixth day, I was again discharged from the hospital, but this time I had no spring in my step or swagger. I didn't want to be in the hospital anymore, but my shining optimism had vanished.
The rest of June, July and most of August is a hazy blur of time, with night not really seeming different from day. The couch, the TV, fitful naps, lack of energy from blood loss, hourly checks of my temperature to check for fever, pills, scrambling to make it to the toilet in time, documenting every little fart and bowel movement, and the pain. The pain that defied explanation and attempts to mask it, and would eventually only be subdued by a giant ice pack.
Only one night stands out, and would be the absolute lowest point of my cancer battle and my life for that matter.
It was Canada Day 2010. Dale and Madeline had left town to spend the weekend at a cottage with some friends, but I wasn't feeling well enough to go. They both needed a break so I told them to go and have a good time, and that I would be fine. I wouldn't.
That night I was set upon by pain I could never have imagined before, and I literally spent the entire night in agony rolling around on the floor of my living room (this was before the big ice pack breakthrough). I think I slept for twenty minutes. With regret, in the morning I waited as long as I could and called Dale to come home and rescue me, which she did of course. And wouldn't you know it, that night I slept for ten hours, a feat I have not accomplished since. They came home for nothing.
I got in to see Dr. A early the next week and she was at a loss to explain the pain. At one point she described the pain as 'unpleasant', then put a gentle hand on my arm and asked me if it all wasn't psychosomatic, you know, in my mind? Count to ten Paul. I was barely able to contain myself and images of Tasering her flashed through my mind. Instead I hit her with a blast of ThunderVision and told her no, the pain was real. She referred me to Dr. C, a neurologist with a 7 week waiting list.
In the meantime I was going out of my mind at home, dealing not only with all this pain but the normal recovery from the surgery, and the complication I had with the bleeding, which had continued unabated. Did I mention I wasn't having any fun at all? You know those stories you hear about people suffering from serious illnesses that are always positive and smiling and all that? I wasn't one of them.
Movies were my best friend during this period, and I watched them all day long on cable. Around this time a film called My Sister's Keeper came on The Movie Network. It tells the story of a teenage girl with cancer, and her younger sister, who was conceived by their parents in the hope of providing donor material for the ill sister. The young one then sues the parents for 'medical emancipation', while the sick one declines and dies. Watching this was not a good idea for me at this time, as you can imagine, and I was bawling like a pre-teen girl at a Justin Beiber concert. I stuck to comedies and action flicks after that.
I wasn't getting anywhere with the doctors in terms of dealing with the pain in my upper body, and so I started to do my own sleuthing. I was going over every single detail of the experience since I was first diagnosed, and when reviewing the info sheets from the pharmacy that I got with some oral meds I was taking, I stumbled across this little gem regarding one of the antibiotics (Cirprofloxacin) I was on (the italics are mine):
Ciprofloxacin may rarely cause serious nerve problems that may be reversible if identified and treated early. Seek immediate medical attention if you develop any of the following symptoms: pain/numbness/tingling/weakness in any part of the body, changes in how you sense touch/pain/temperature/body position/vibration.
But that's what I did! I sought immediate medical attention, but not one of the six nurses, four doctors or the hospital pharmacist asked themselves if I might be having a side effect reaction to the medication I was on.
Dr. C saw me much sooner than 7 weeks after all and arranged an MRI on my neck. His theory was that I got some nerve damage in my neck during the surgery when I was intubated. If you don't know, whenever you have a general anasthetic they tilt your head way back and put a tube down your throat in order to keep you airways open. The MRI did show some degenerative disc disease and herniation of some discs, and it was possible that the intubation had aggravated these areas. He also mentioned that he didn't think that any of it was related to 'toxicity' (i.e. my medications) or other cancers. Hmm. As it turns out these pain and numbness problems are also common symptoms of spinal cancer. What in the name of little green apples? Can you believe it never occurred to me that it could be another cancer?
So maybe it was medication. There is quite a lot of evidence suggesting that, while rare, adverse reaction to fluoroquinolone antibiotics (of which Ciprofloxacin is one) are prevalent and well known. Or maybe it was a preexisting condition in my neck that was aggravated by the surgery that caused some nerve damage.
But here's the problem: None of the timelines add up.
If intubation on June 8 aggravated my neck problems, why did I not have any severe symptoms of the pain in my arms until about ten days later (except for the numbness in my right leg immediately after surgery)? Did I further aggravate the problem when spending nine hours on an ER stretcher? Did I have weeks of severe pain, loss of function in my right arm and a year of physiotherapy for want of a pillow?
It also seems like it couldn't have been the Ciprofloxacin, although I remain skeptical. As it turned out, I had only taken the Cipro orally after I was discharged from the hospital for the second time, but the pain symptoms began during my second hospital stay. However, I was on a series of very powerful antibiotics while in hospital that also list similar possible side effects. It's my belief that no one can know how this cocktail of drugs could react on any one person, and when things go wrong, no one knows what to do. Later, you'll see a separate post detailing all the medication I was given during this period, and it is frankly staggering. Was I poisoned by a combination of medicines, with no one person being aware of everything I was being given?
So where did that leave me? With a bunch of maybes, no one taking responsibility, and probably no one learning anything. No doubt, the hospitals and doctors will go on prescribing huge quantities of medication based on 'protocols' and no one will look at the patient as a person. My calls to Health Canada to report my possible severe reaction to these medications went unreturned.
After a few weeks, I don't even know when exactly, the pain dissipated, and a full year of physio restored the full range of motion and strength to my right arm and shoulder. However the numbness remains in my right leg, right forearm, left thumb and elbow and parts of my ribcage. As of September 2011, Dr. C says it might improve a little more but probably not. It's my new normal.
It's very frustrating and some anger and bitterness remain with me to this day.