YOU HAVE CANCER !
Over the years and down through history, our English language has produced many words that have sent shivers up and down the spines of our human race. In early Bible times, Crucifixion, a little later in history, the Black plague, Gun powder, the 3rd Riche and Communism, Atomic bombs - Nuclear bombs, terrorist, but none more frightening than the words,
“YOU HAVE CANCER.”
Our families have been very fortunate to have avoided this killer, the big “C”, However, recently we have become victimized.
It started with Joan (my wife) having treatable Basil and Squamish skin Cancers removed by a burning or cutting methods and then a Melanoma on her right shoulder. This was not to be ignored and following two attempts by a second-rate Plastic surgeon who was much more interested in the big money of breast implants, Joan had a nasty scar but rid herself of this Cancer. Be warned, choose your doctors with care, ask around with friends and patients. There are some second-rate people out there that are to be avoided if possible.
Happy Thanksgiving, October 8th, 2018
Turkey Dinner –
114ml Pineapple juice
Cream of tomato soup (no cream)
Pumpkin mousse Tea Milkette salt pepper White sugar
Milk 125ml 1%
The above is a sample of what I had for Thanksgiving Dinner Oct 8th and it was just a foretaste of what was to follow for a very long time.
Tues. Oct. 9th. 2018
We are now into our 5th day and my diet since Friday has been “0”, no fluids, no solids, Sunday I had 2 small ice cubes. Fluids only started Monday. However, back to 0 everything until after my procedure. I am hoping it will be early because I have a busy day planned and a sip of water would be very nice.
I am writing this report starting from my bedside in the Emergency room at the new St. Catherine’s hospital. I have been lounging here for the long week-end as we seem to always pick a holiday for our health scares. I have settled in to my surroundings with some difficulty.
Health care in Canada leaves a lot to be desired. I have had some experience outside of Canada so can be fairly objective. Mostly in the USA but also in Spain, the Dominican Republic (D/R), and on board many Cruise ships. I have spoken to people that return to different countries in Europe for procedures that they would rather have done there than in Canada. Since 1971 I have spent a lot of time in Florida. I have experienced many visits to Chiropractors, Dentists, GP’s, Plastic surgeons and hospitals. I may have just been lucky but over more than 45 years, I can’t recall a negative experience. This compared to issues in Canada every time we come in contact with our social Health care system. The old adage, “you get what you pay for” can be interpreted in many ways, our services are covered by the welfare system, the problem is that they are grossly underfunded and poorly managed. Perhaps a combination of government funding blended with free enterprise management would work better. Something must change.
About two weeks ago, my bowels started to cause me concern. My stool was very black and resembled Tar. My next appointment with my doctor was in two months. It is important to schedule appointments with your GP doctor well in advance. Our situation dealing with a large medical group gives us the ability to see a doctor or practising nurse with very little notice. If you need to see your doctor quickly there is one hour set aside in the morning on a first come first served plan. Unless you are prompt within the first couple of minutes at 8:30 AM to book that day, you wait. On this occasion Joan just called hoping to make a regular appointment, probably in a couple of months but was lucky and caught a cancelation for the next day, as she explained my (Tarry stool), this may have hit a nerve of concern prompting an early appointment.
Blood tests one week apart would reveal the severity of the situation.
On Friday, the day before the long week-end, I was instructed to go to our local Welland hospital for examination. I would need an Endoscopy and would have to wait until Tues. with no beds available except in the Emergency. However, the St. Catherine’s hospital was much larger and could do it the next day (Sat). Neither hospital had any beds so I opted to stay in Welland and be transported at 8:00 AM Sat. In Welland I was lucky and got a gurney in a small room that boasted a bathroom but little more. I was up at 5:00 AM after very little sleep and had over three hours to wait for my transfer. I was admitted very quickly and waited for two hours for the beginning of my procedure. This is where an exploring tube is inserted down your throat and into the stomach looking for bleeding. They found the problem in my esophagus, a tumour that was probably Cancer.
I phoned Joan and told her the bad news. When Joan and Michael and Richard and my four grandsons arrived with such sad and upset looks on their faces, I felt that I had failed them by causing them so much grief. I became very emotional and was so embarrassed.
Almost four hours went by with my family becoming very anxious. We were still in the room where I had the procedure. We flagged down a young man by the name of Eric, we were immediately ushered, the whole family in tow to a small room in the emergency ward. I was expecting a Hospital room, I was informed that was not going to happen for at least three days. I objected and demanded to see someone with authority to fix this, now! After all, this hospital was well aware in advance of my condition and needs. I was able to get some satisfaction from a lovely and caring girl who called for a regular hospital bed to replace the hard and narrow Gurney. This was a start but not what I was hoping for. Government run establishments rarely provide satisfaction to the public by providing a real problem solver. Private enterprise feels an obligation to please, Government does not. Workers, though very good people, they have explicit guidelines and fear for their job promotions if they go beyond their status. I was running out of steam and beginning to realise that I was not in control and would have to be satisfied with a real bed which I appreciated more the longer I was in this part of the system. I had one more hope, there was one more person invited into this situation but after finding out she was a volunteer, I gave up. She asked some difficult questions that we face in our society from time to time. “Do you think it is fair to jump the line?” I sure didn’t want to get into that argument, not here and not now and to what purpose? Perhaps God has put me here for a reason. I am comfortable in a proper bed; my care givers are great. I did ask for a room change as I found it hard to sleep with a night light shining in my eyes. At midnight, the room next to me became vacant and so now I could settle in without much to complain about. No mirror or toilet, no where to put any toiletries or clothes, just two hang up hooks. Bathroom information was scant and I had to ask for a urinal. But I had my treasured bed.
It was much better accommodations than for the local population in San Paulo D/R. Forty hours in that hospital for me was an eye full. People stacked 3 and 4 deep on wooden beds with hardly any hint of a mattress. As many as 30 in a room. When there I was so thankful that provisions were made for the wealthy and the tourist trade. My patient and I were put up in a large room with a proper bathroom and colour TV. Our choice of stations was CNN (yuck). Sleep came hard that night as I spoke no Spanish and our doctor spoke no English. Our future looked rather bleak and uncertain. The good old USA would not abandon one of its own and my patient was a citizen even though she was born in Canada. On our departure, I was complimented by Dr. Jose that my Span-English was superb. A scant knowledge of sign language helped greatly. We are parents of two deaf boys.
My doctors here have been very good and explained the procedures and a bit of what to look forward to. After Dr. Dan Segal presented me with the bad news directly after the procedure, he explained that I would be here for a few days and that I was being scheduled for a Cat Scan and then on Tuesday another probe of my throat to determine the kind and size of my growth. This will determine also what treatment and when. The Cat Scan was completed this morning and explained to me this afternoon. I was in great anticipation because this procedure will show if there are more Cancers showing. From neck to waist a thorough picture is portrayed for the doctors to examine. It was explained that the blood in my stool was from this evil growth and that leaking blood made its way into the stomach and through the bowels. The fear is, did it leave any evil to grow somewhere else? For now, the answer is no, but they are never sure. Joan and Michael, Matthew and Alex were there for the report from Dr. Raut. I was afraid that the boys and especially Michael would not take bad news well. This was a test that did not have to be made. All the reports were positive. The growth was caught early which is good for me. The lesson here is, do not delay or have delayed by the system, any abnormalities in your body functions.
Back 8 years ago my wife had a family doctor that favoured her staff over the welfare of her patients and she had cardiac arrest in the hospital due to not having her heart examined in reasonable time. She has survived a quadruple by-pass but no thanks to her doctor. We fired her and her husband and survived for a year before finding a new replacement, this due to the shortage of doctors in more rural areas like Orillia where we lived at the time. Doctors are for the most part, wonderful, and can and do save many lives during their careers, but if they let down their vigilance, lives can be compromised. My advice for what it’s worth is, this is your body and you are the only one in there, treat it with respect because it is not replaceable. Some parts are, but, you get my point. Listen to it and respond when things don’t feel right. Ask questions from the professionals, they sometimes expect you to understand what they think is normal language. Do not let a word go by that you do not understand.
Monday, Thanksgiving Day, has been a good one. I woke up rested after three sleepless nights. Sleep is so important. I feel that I have brought a little sunshine into a few lives. I feel good about my prospects. Anxious for a good day to-morrow and look forward to the other side of this interruption of my normal retirement life. Dr. Raut paid me a compliment that I will pass on, not for my glory but to emphasis the affect that the patient’s response also has on the doctors and staff. I got bad news yesterday, I have Cancer, I tried to be my normal self but could not. I was depressed, sad and frightened. It took me overnight to get my own thoughts under control. His compliment was how my being positive and cheerful in the midst of what seems to be the end of the world also had a positive affect on himself and the staff. How difficult it must be to be the bearer of such bad news.
My concerns were also for my wife of 60 years. Joan has had a number of Nocturnal seizures. She was content to be left alone and I would have nothing to do with that decision. I would worry myself into a rage. Michael and the boys stayed with her and our dear neighbours are taking her in to-night. Norma, Joan’s sister will drive from Sarnia to be with her for a few days. What a commitment. This is the time for family unity and I am so grateful for all the emails and phone calls giving us support.
To-day after a great sleep disturbed only 4 or 5 times by my IV alarm or those cruel blood suckers, and another talk with my God, asking for help, and with the good news from my Cat scan, I was back to being positive and happy to be alive. This attitude was brought about also by a visit from our friends and neighbours Ron and Alice. Ron is a retired business executive. Having felt the love of our Lord, he became a Born Again Christian and worked for the Salvation Army until retiring.
Dr. Raut, my internist commented on how pleasant it was to talk to someone that was so positive after hearing such bad news. He encouraged me to write this report so that others facing similar hardships might be helped. He commented that most patients find it hard to accept being hit with this scary evil, the big C. and they are bitter and cross. For a caring doctor, it has to be very difficult. He said how easy this conversation went. This made my day.
Tuesday, Oct. 9th. 2018 -
This was to be a good day, I was hoping to be in a regular hospital room. It is 7:40 pm and I am still in a room with few amenities in the Emergency room at the St. Catherine’s hospital. I am getting feed back from all the employees that this is a very poorly thought out building. It is impressive from the standpoint of the layman and when it was opened there was a great sigh of relief from the public that finally we have a hospital that will meet the needs of our community for many years into the future. For any one visiting, you would think just by the size it is more than adequate to fill our needs. It is NOT! Rambling halls and an entrance that is spacious and impressive makes you feel good. Go behind the scenes and you will find dozens of rooms and open space not utilized. Room after room lying empty. The hospital rooms are beautiful and could be considered opulent, they stand ready for action but the government only allows a few open at a time due to financial and budget restraints. While down where all the real action is, The EMERGENCY, we find a warehouse of patients crying out, “Let me out, take me home, I want to get out.” Bed after bed surrounding the nurses station with patients slumped over drooling and panting for a decent comfortable bed. The lucky ones are in a cubical in the same crappy gurneys with a pull curtain drawn across for some privacy. Most leave the curtain open if they are at all claustrophobic. There is not a window in the whole ward and that is bearable for short stays, but not for more than 1 night. The rooms that are for admitted patients such as mine, I must use a cardboard urinal. After the fact, I was informed that they are to be used only once. Consequently, I was told to pour the waste down the sink drain. I am told that far worse stuff is put down there. These sinks should be for washing and brushing your teeth. Repulsive!!!
I would use one of the three bathrooms provided for our section and was appalled by the state and filth that I found them in. We were sharing the washrooms with hundreds of Emergency people waiting to be looked after. I took a walk into this den to find children mixed with convicts wearing hand cuffs, drunks and drug addicts. I made the visit to see for myself what a hospital emergency was like at it’s worst. I had just missed witnessing an altercation with a woman and two men just recently arrested and brawling on the floor in handcuffs. The Police Dept. would like to bypass admissions and take drug, alcohol and mental related detainees direct to where they are usually treated. This is not possible due to red tape and the need for every patient to be admitted through admissions. A simple form filled out by the hospital staff and the officer done on arrival would be quicker.
Every day in here, makes you feel more and more like a convict. However, convicts have a toilet and sink, my room -just a sink – convicts have TV-my room in fact the whole ward was void of a single TV. Convicts have internet service and email– not in my warehouse. Patients share bathrooms with the public and they are often unfit to use. These bathrooms are 1 sink and 1 toilet. No showers were available. Staff will go to the staff washrooms rather than share with we patients and the public. Patients are warned that our stay could be 3 to 5 days in this hell hole before a room might come available. If the health department were to be brought in, I am sure this part of the hospital would be condemned and closed. I have one of the best rooms in a semi quiet corner far away from where the real dirty action is. Drunks, convicts in hand cuffs, baby’s crying, irate men and women screaming at staff, crowded and disgustingly helpless citizens just trying to find an answer for their health care. People at their wits end yelling obscenities. I guess I am pretty naïve thinking that Hospital security would be a cushy part time job. I have seen these men and women in action and they don’t just give out parking tickets and check ID’s.
The waiting game continues as I wait for my call for another scope of my throat and cancer. When your life is flying through your mind and you are wondering just what do you have in your future, or if you are going to have a future, waiting is very hard to do. It is harder when you are in the “unknown zone.” I am still here because I have not had a decision made as to what area I should be in, while others that came into the system much later than I are in their rooms and settled, I still languish in this virtual Hell hole. I am concerned about my ailing wife at home. My age should be taken into consideration but it was not. By the way, I am 82 years old. That must be in the records some where and should be considered.
I am not for one minute slamming the hospital staff or the doctors or anyone. They are all very courteous and kind. It is the system that can’t be dealt with because it is like a mist that vaporises when confronted.
Finally, a fine young man assisting my surgeon who I will see some time to-morrow, came for a visit and explained a bit more about my case. Nothing really can be determined until we see the surgeon who will be assessing my last tests. All I know is it is a 90% diagnosis that this is cancer, it is still seeping fluids, it is in a bad location and hard to operate on, treatment would be radiation and chemo therapy or medication. Another test could be called for, called a Pet scan, this will help determine if there are any more smaller cancers, if there are, what is the next move? Am I destined to remain in this Hell Hole for another 5 or 6 days? I am taking steps to see the hospital administrator Suzanne Johnston to-morrow to see if I can get a proper hospital room, she is the only person that can “Jump the line” perhaps a room with a mirror and a toilet and a place to put my belongings. I have none of these basics here. I have had to use the public washroom almost 50 times since last Sat. afternoon. It is not a pleasant experience. Before turning in for the night, one last pee. I note this here to emphasise how important bowel and peeing is when in the hospital. Our culture puts a great deal of emphasis on cleanliness but that is a luxury where I am.
My stint was changed to my left arm with some difficulty, I have been poked for blood so much that they are running out of veins, my arms are in bad shape with purple bruises. A specialist was called in to find a place to stick me. He got one and so I am now getting my IV fluids again.
I didn’t want to make the long hall trip to the washroom so decided to use the cardboard urinal. My manpower has taken a trip south for some reason and that with the fact that I shake, and the feeding tube is now in a foreign place, crossing the opening of the container and for no reason at all the power went out on our floor. It was pitch black for a few seconds. I could not find the urinal hole; the pressure was up and the flow missed its target and was released. On the plus side, the stain on the floor was removed along with the clean up. My nurse was not flustered at all and found some towels and stated that this was not the first time for her.
Wednesday, October 10th, 2018
This morning I woke up with a better attitude after a good 7-hour sleep. I had asked Joan to send an email to the Hospital administrator Mrs. Suzanne Johnston. I was sceptical after speaking to some of the staff, but I was getting to the point of desperation. The staff were all great but after my accident, I had to act. If I was ignored I would have taken my best friend (the IV pole) and make my way through the lobby to her office. Thankfully, I was stripped of that disgusting action. Martin Ruaux head of nursing was at my curtain mid morning. I was impressed at the re-action to my short letter. We had a very amiable meeting and Martin seemed very interested in the report in the form of a letter to be put on my web site. He explained that he was there representing his boss Suzanne and she would be in to see me after 1:00pm that same day. Wow! I must say that I was impressed.
I know nothing about the complex running of a large hospital and after speaking to staff and head managers I feel that they are doing the best they can with what they have. Some say this beautiful building is too big, most others that are better informed will tell you that it is far too small for the influx of new residents in our area. Suzanne managed a hospital in BC and said that Ontario should pattern our health care on their plan, put in place about 15 years ago. It is starting to pay off now with much of their health care done in the home. It must start sometime for big benefits in the future. Government can have a major influence by providing the funds to explain to our population that they must get involved. Volunteers from all walks of life and especially those already in the civil services such as Police and Fire Fighters and teachers are perfect candidates to begin the program. This group are vetted and have many more weeks per year that are not work related. These are only some of the government workers that are making good wages and wonderful retirement plans, and should be giving back to help us get out of this terrible dilemma. I am told that for many volunteer positions, to be accepted you are put through such a rigorous set of questions and requirements that it is not worth the effort. The public service unions and the teacher’s union to start should be more than happy to take a leading role in this sort of endeavor to save our health care. Am I being naïve?
I had a conversation with two hospital patients to find that one “Paul” had been in the system for eight months. “Shannon” for 22 months. From my observation, live in home care would be far more practical for the system and certainly for the ailing patient. The savings would be enormous. There are thousands of Philippino nurses that would be far better choices for entry into our country than the refugees we are bringing in who are from a totally different culture and a burden on our resources. We are bringing them here to our detriment, just to look good on the world scene. Paul and Shannon are living in subsidised apartments and at the same time occupying much needed hospital beds. Both these people indicated they would much rather live at home with home care companions.
Thurs. October 11th, 2018
I am in my new digs and what a difference. A window without a view but I do look onto a courtyard. I have a bathroom-sink, shower, toilet, mirror and a urinal with a cover. My room has 3 chairs and 2 storage units. It is clean and quiet. Peace at last.
Last night was spent with another catheter punched into the place they just removed one a few hours earlier. This time to give me a couple of units of blood. I figured since I have given these people blood over the last 6 days, I was deserving of some back. The girls got it started at 10:50 pm and the transfusion was completed at 7:10 am. An almost sleepless night. I had a great day with calls from our bubby’s in British Columbia and Judy H. and George. Visits from Jack, Henny and Asger, Ann Bell, Martin from the Hospital, Ron and Alice, my doctors Segal, Raut, Yashit and Blewett, Terry, Brian and Aaron came at night while I had to be away for an Ultra Sound. Very tired so ready to retire. 11:00 pm.
Friday October 12th, 2018
7:15am. My first visitor is my water girl. I had slept 8 hours straight through. I haven’t done that since I was a child.
Today I am to have a bone scan and this will determine if there are any other cancers in my body. It detects very small ones as my cancer could have spread. 10:30 was my appointment so the nurses wanted to check my port as I only have one now, to be sure it was clear and found that it was not. A new port needs to be put in and it is getting harder and harder to find a spot. Three nurses on this floor have tried unsuccessfully including the head nurse and now they are waiting for me downstairs and they have said they will put the port in when I get there. Now a 4th try with the nurse at the bone scan and she has been unsuccessful as well. Without hesitation, she opened a box – removed a syringe with a vial no larger than my little finger – gave me a shot and said she was finished. As we were still in the hallway my porter was sitting waiting and observed this and asked what was the purpose of the port when she could just give me the needle? Answer – the port makes it easier for us but if someone just comes in off the street we don’t really need a port we just give them the needle. Four nurses poked and prodded me with needles unsuccessfully for something that really wasn’t necessary. Time and talent of 4 professionals taken up plus the pain and suffering of the patient. My nurses on the floor including the head nurse were not aware of the fact that a port wasn’t essential. The only reason it is used, I am told by my resident doctor (Yashit) is that in rare cases a patient has a reaction to the dye, and the port is there if it is needed.
Arriving at the bone scan department I was immediately wheeled into a large room with an intimidating machine, it was obvious that I was going to be pushed through lying on my back – arms tied to my side. The technician was not at all verbal and neglected to remove my glasses, watch, ring and dental plate, which I inquired about. There was no instruction -verbal, written or visual as to what I should expect. I was not even instructed to lie still, it was just assumed I would know and do so. I would have expected some information as to the length of the procedure and what to expect when various parts of the machine are moving about over my face – tickling my hand etc. but the greatest concern is the total silence in a room void of anyone. The only break in the more than 45-minute procedure was when I was asked my full name. I am not sure whether this was to wake me up or to give me some assurance that there was someone in the building. I mentioned my concerns to the technician and he was quite receptive to discussing it with his superiors. Even a premade recording with relaxing music in the background and some indication as to what was happening would have been comforting. While waiting a video loop could be showing the procedure.
My results from the bone scan and the test to see if I have any blood clots were all negative. I m getting closer and closer to the door at the front of the building, one last hurdle to jump. Has my hemoglobin increased enough to see me out the door? Yes, before starting on this journey it was 130, it got down to 87 and my number that got me out was 96.
My good neighbour Ron was at the front door as we arrived just after 8:00 pm. Home at last.
I am quite aware that this is only the beginning of what could be a long and tough fight.
There is no argument that our Health care in Ontario is broken. When you are admitted and your complaint has been determined, you should be admitted to a hospital room for further care, not warehoused on a gurney in the Emergency ward. The difference in cost between a hospital bed and one in Emergency can’t be that great. Each department is allocated how many beds will get financed each week and when that floor has reached the government limit, it matters not how many more patients are waiting for the remaining beds that are empty but not financed, they must wait in the deplorable conditions of the Emergency.
Another problem is that many patients could be ready to be discharged late on a Friday but can’t because their doctor wants to sign off first and does not come in on the week-end. These beds could be filled by needy patients and the patient ready for discharge could be home with their families. This problem is easily remedied by having the doctor file the minimum conditions the patient must attain for easy discharge. This is what my Doctor, Dr. Raut did before he left on Friday evening.
I felt like the secret shopper while I was in the hospital for 8 days. How much more do these poor souls on the front line have to put up with? I looked into the eyes of so many and their compassion was all they could offer.
We spoke earlier about jumping the line, normally I would be against such a thing and realise that we are all made equal and all should be treated the same. HOWEVER, should I, a citizen all my life, a contributor to society by paying taxes and employing dozens of people, never being a burden to society, not have some preference over a drug user that returns over and over again due to his habit, or a refugee that has come here illegally and made himself the responsibility of the government (the paying taxpayer). I personally feel that if a citizen that has contributed all his life to our system and been successful wants to pay for his services, he should have that option. Jump the line? In some circumstances “YES”.
Chapter 2 .
Oct. 13,14,15,16 Home
Tues. 16th Oct. waiting for my assessment with the Oncologist and starting to relax a bit as my stool while still black has become less runny and gross. A phone call from the Cancer clinic in Hamilton has caused us some concern and apprehension as they are booking me for the next day, Wed. 17th for a Brachytherapy. This is where a tube is inserted into the cancer mass and a radiation seed is released and exploded. This shot is many times stronger than the normal doses spread over many weeks. Three are administered to stop the bleeding and after this first shot my surgeon met with me to reverse the former thinking expressed to me by the St.Catherines experts-which was “my first line of defence would be Chemo, radiation and meds., and surgery was the last option and to be avoided at all costs”. Now I am hearing a completely new scenario and I am scared to death and wonder where to turn. It is like the Hamilton Cancer team are trying to steal me away from the St. Catherine’s team and I am the football. (Go Tiger Cats)
Monday Oct. 22nd, 2108
I came home a week ago last Fri. Michael and the two boys were with us that week-end and trips back to Hamilton and Sr.Catherines and my family doctor have kept my mind off the future. Brenda and Henny and Ron and Allice have been a wonderful support in driving when I have been sedated and can’t drive myself. 24 hours are required before you are legally able to drive. Otherwise you could be charged with “under the influence”. Joan is waiting for Cataract surgery and not able to drive on the highways.
On Thursday, I had my first of three Brachytherapy procedures in Hamilton where a large dose of radiation is shot into the tumour with seeds of radiation ten time the regular dose. This is primarily to stop the tumour from bleeding. The first has had no effect that I can see.
We attended our new church at the St. Catherine’s citadel of the “Salvation Army” on Sunday to be greeted by so many people that welcomed us back with their best wishes. Many have been praying for me and I am grateful for their concerns.
I woke up after a good sleep under the influence of Gravol to be concerned that if I were to be given a pill to put me to sleep permanently, would our large insurance policy be rendered null and void? After a long visit over the phone with Rhonda, we were assured that it would not be affected. Meagan, her daughter is going through a terrible cancer of the breast and is far from being out of the woods yet. Our prayers have been sent out for months now for this lovely and talented young woman.
Wed. 24th. October 2018
My dear niece Brenda saw that we were in a bad way and stayed over. Brian and Donna came for lunch and left late in the afternoon. Dr. D, my new friend in our community called and gave me a frank and realistic overview of our future. I was so pleased to receive his call but not his message.
Thurs. 25th October, 2018.
In Hamilton at 8:45. St. Joseph Hospital for Endoscopy by Dr. Shargall (surgeon) then at 1:45 at the Jarvinsky Cancer clinic for my 3rd. Brachytherepy. I had to cancel my MRI for my left knee in Niagara Falls at 8:45 PM. I was just too tired.
Fri. 26th. October 2018.
Back to St .Catherines for the long-awaited consultation with Dr. Y (Oncologist) at the Walker Clinic. She was very late. The wait was long and stressful. Brian and Terry, and Brenda accompanied us on this appointment as we needed younger ears to take in all the information that she had gathered for her assessment. As I have two more important tests to complete, Pet scan and an Echo gram, an accurate assessment is still to come. My blood count has dropped to 77 from my count when I was released from the hospital a week earlier at 89, I was obliged to spend the rest of the day for a single unit blood transfusion. Another is set up for Mon. AM. My Oncologist while well meaning is not all she should be in my opinion. She speaks with an accent and far too fast and is not complete with instructions. She was almost an hour late and was running out the door to another engagement before I was satisfied with our meeting. Brian asked for a prognosis and we were told I had about 6 months to live. At this point our last words with her were “I won’t need to see you further, good luck”, This seemed to be difficult for her and she was gone without any more help for my needs.
To be clear, this attitude on her part was because I was told by many of my team members in St.Catherines that surgery was very difficult and not pleasant and it would be a last resort. My surgeon (before the series of tests) had given me a 20 % survival. I had already put chemo and radiation on the back burner as being as detrimental as the cancer. My Oncologist should have taken the time and waited for all the test results before dropping me from her files, a feeling of abandonment came over me.
Our week-end was set aside for ‘R and R’. I did accomplish a normal Bowel movement with no blood. Small accomplishments do give one a lift under these circumstances. My email to the boys bringing them up to date still has not been acknowledged. We called the two families to have a talk tonight. Stressed the importance of them making a quick check of their emails every day.
Mon. 29th Oct.
Arrived at the St.Catherines hospital at 8:58am and had a unit of blood. Out by 1:00 pm and home for lunch. Good day.
The Lord works in mysterious ways;
I asked my God to give me a sign, something that would show that he was still in my corner, not a bolt of lightening or anything so obvious, just a gentle hint that he was still there and gently showing me some direction. He came through to-night with the answer I have been looking for. A good friend called from out of the blue to give me David Jewel’s phone number as David would like to re-new our old friendship. Neither knew my dilemma and my health problems but have had first hand contact with my horrible cancer and after a great deal of research, recommend that I consider very seriously going forward with any Chemo or radiation as at the other end I would be no closer to a cure but would have endured a great deal of trauma. Quality of life is so much better than quantity, being perhaps a few weeks or months of poor health.
I decided to get out and turn my thoughts to something other than my cancer. Wed. AM coffee is a highlight of my week so what better than to mix with my friends in our community. Apparently, I look pretty good still so it was not as difficult as I had envisioned. I also won the 50/50 which was $40.00. That will pay for parking for one day at my Hospital visit in Hamilton. My retired doctor friend wanted to give me a bit of advice when going forward with my decisions for future cancer care. He reminded me that when taking blood thinners for Afib, taking me off for future procedures could cause stroke or failure. Also, when on Iron pills my stool is dark and then what warning would I get that I was bleeding internally again. He spoke of Palliative care when the last few days or weeks are upon me. I have been made aware of the three ways of dying that are most likely going to be in my case and they are –
! Bleeding (cancer eroding into a major blood vessel)
2 Obstruction in throat.
3 More cancer cells than normal cells
For unbelievable care I have been informed that St.Catherines offers Palliative care and then Hospice (10 beds) constant care with facilities for spouse. This special facility has to be recommended by my Health care team. My transfusions when required need to be Packed cells not whole blood.
Ultrasound in Welland at noon.
Bob Baker dropped in with soup and home-made bread. He is a good listener and retired from the Canadian Airforce as a Chaplin. I am grateful for such caring friends.
Fri. Nov 2nd.
My second to last procedure will be done in Hamilton at St.Joseph’s Hospital. It is called a PET scan. Two large cups of vile liquid with traces of Iodine are drunk and then a mix of radio active something is injected into a port which is becoming almost impossible to give me as my veins are collapsing due to the number of blood samples I have given over the last 3 weeks. Total rest with only sleep if possible for 40 min. while the radiation is attracted to any cancers, then a donut shaped machine surrounds you for almost 1 hour and you are photographed from head to toe looking for any other cancer in your organs or body. We had an early supper at the Lakehouse on the way home. My body is getting tired.
At 12:00 noon to-day I was in the Welland Hospital for an Echo gram to see if my heart will stand up to surgery if I were to go that route. Euchre to-night to get my mind off this terrible ordeal.
A visit to my family doctor gave me little comfort but I can’t expect much comfort facing my future. We have arranged a blood test every month to check my hemoglobin. It took three tries before we were able to draw blood. My veins are closing down in my arms and hands from all the stents and needles.
Up at 5:30 am. to have Joan at Welland hospital for her eye surgery at 6:00am.
1st. signs of my throat closing up after my breakfast of bacon and eggs, toast and juice. Had to turn down hot cereal. I just could not get it down with comfort.
Fri. Nov. 9th.
My Oncologist has given me pretty much all the options open to me. My decision has to include the fact that I have a heart problem, Afib. Any Chemo or Radiation could have a detrimental effect on my heart. Surgery is out as far as I am concerned, far too risky. I am choosing to do nothing and if required closer to the end, I may opt for radiation when in palliative care. She was OK with my decision where in hind site she should have insisted I see the surgeons before my final decision.
Thurs. Nov. 15th.
On the 13th I saw Dr. Sur my radiologist in Hamilton. I came out of that meeting with not much more to hang my hat on except that he convinced me to continue seeing the surgeons and complete hearing all my options. I am very glad I did. Dr. Sur is a kind and helpful man that gave me the advice that I should have been given by my oncologist.
Thurs. Nov 17th
Dr. Shargall saw me with Joan and Brenda in attendance. He explained that he was aware of my concerns of chemo and radiation prior to surgery and put my mind at ease. You are cancer free except for your Esophagus and it has been caught early. Your other tests show you are a healthy 82-year-old and are a pretty good candidate for this surgery. You’re A fib is a concern but we can by pass the heart somehow and would bring your % down to about a 60% success rate. This was tremendous news. I now have something to fight for where as before I had only the prospect of a lengthy struggle and a nasty death. Dr. Shargall is a pleasant man that puts no pressure on the patient but explained that he does not fool around with cancer and could schedule my surgery within 10 days to two weeks. I was back to his office the next day, Friday, to advise that I was now ready for surgery.
To-day is Monday Nov. 19th at about 3:15 pm. Michelle has called to give me my pre-op date Nov 28th. and my surgery is on
Mon. Dec 3rd.
It has been a long and interesting journey to come full circle from my initial decision of no surgery to opting for surgery ASAP.
This is the only way as difficult as it is to be. It gives me a fighting chance and that is what frustrated me all through this ordeal, not to have a chance to fight back. I am excited now and wait with mixed feelings, I feel good that I am given a chance as bad as the odds are. On the other hand, I am frightened that when I am wheeled into the O-R, I may not survive. Over the past 82 years we have made many friends and few enemy’s. All I ask is for a fighting chance which I have been given, and the support of all my friends and relatives with their prayers and good wishes.
Thurs.Nov.22nd. Blood count taken yesterday 127.
Wed. Nov 28th, Pre-op appointments with Doctors in Hamilton.
Mon. Dec 3rd, Surgery
I have completed the first phase of my journey and now Dec.3rd will take me and my family into a very new life experience.
CANCER OF THE ESOPHAGEUS
Brenda, Joan’s beautiful niece drove us to our destination in Hamilton, the St. Joseph’s Hospital, Juravinski Innovation Tower. We arrived early at about 5:30 AM and had to wait for the front door to be opened for us. I am not sure why I was so anxious for the following procedures to begin except that this was to be the answer to my not having to wait for imminent death. Once I was in the building there was no hesitation and before I knew it, I was on a gurney and in the #1 stall awaiting my operation scheduled for 8:00 AM. Almost 12 hours later I opened my eyes to see three tired but relieved faces of my three beautiful girls, Brenda, Joan and our God daughter Tammy. When asked if I recognised these girls? I immediately answered, Yes, messy, bossy and my beautiful wife, Joan. I have no idea how these words came out except that Tammy is a Sargent on the police force, and I have no idea if Brenda is messy or not. I hope to find out as I am going to have to be a good boy and not have any complications. After the procedure I just endured, complications would surely be a concern for my survival.
After my 5 plus hours + in surgery and a 6 hour hold in recovery because of a problem with pain management, I was returned to what is called Step - Down surgery (recovery) where I was held for 8 days until I could manage a bit on my own. They had me up walking my first day. This was an active place and I was anxious to be out and in a regular hospital room with a private bathroom and a slower pace. My only real pain was when there was a mix-up on my computer forms and my night nurse refused to give me my pain killer on demand and when assisting me out of bed, he pulled the wrong way and sent me into pain that caused me to cry out uncontrollably. My pain management team told me that they wanted me to have no pain as this would help me to heal much faster, I am sure that it worked for me.
Step Down Surgery was a busy and active place. Sleeping was a problem for me and the hospital was having difficulty maintaining a reasonable room temperature. It was far too hot and with no less than 8 tubes connected into my body and mobility very restricted, I was always hot and sweaty. Six o’clock came as a welcome relief as I would normally be awake at 4:00 AM. Like clockwork, at 6:03 two young strong men were wheeling a large portable x-ray machine down the corridor, propping me up and taking a picture of my chest. Early in the morning, all my teams would come for a short visit to check on me personally and to give me instructions as to how to recover more quickly. Meal time meant nothing to me as I was fed exclusively for the first few days by IV. Internal healing was a must. When, after a few days, I was able to view myself in a mirror. I was a bit shocked to see that I was wearing a zipper from my breast bone to my belly button, about 10 inches and another longer incision on my right back. Later I found that there were other points of entry and exits that ended up having to heal before I would be able to have a shower. The healing took much longer than I wanted.
About 10 weeks after my surgery;
I had a bath to-day, not a shower, with 4 inches of water in the tub, I was not going to have a problem with my healing body as all my wounds were above the waist. I anticipated problems removing myself from the tub and I was sooo right. The warm water felt very good and Joan washed my back. That was about all she could do for me, I had to extract myself from the warm confines of my water cocoon and this was done after much effort and arm strength on my part. My bed was my retreat at least for a few minutes prior to breakfast. A few days later I finally covered up a couple of spots on my body and ventured into the deeper water of having a shower. Many weeks of sponge bathing was now behind me.
I feel that I have recovered to the point where I can reflect on my journey.
What a rollercoaster ride it has been.
Thanksgiving week-end 2018, I was told I had six months to live. About four weeks later, I was told perhaps an operation could be performed. Two weeks after that, I was Cancer free, but in a fight to avoid all the conditions that took my percentage of recovery from 95% to about 50%. A recovering patient must be concerned with healthy habits following any surgery and mine was certainly not to be trifled with. Thank God, I was able to come through this ordeal without Chemo and Radiation. Chemo, especially is the killer. My cancer was detected early as I am on blood thinners with Afib. Otherwise I would not have noticed my Tumour until it would have been a phase 3 or 4. At that time in the scenario, my throat would have been seizing up. That is too late for radiation and chemo. Dr. Shargall and his team removed it with all clean sides thus giving me a recovery with no need for chemo or radiation after. I am a very lucky man.
I hope that I have come to the place where I can say that I am on the final road to recovery. I am sleeping better, I have discomfort where my stomach is now but very little pain, my blood pressure is normal now that my pills have been adjusted. I have no idea why I have pain and discomfort in places of my body that were far from any incisions. Michelle, my surgeon’s right hand explained that the 8-9-inch incision in my back had a lot of tissue cut and moved so the stomach could be re-arranged and my body will take a few months to adjust and feel normal. Shoulder pain after this surgery is experienced because the patient is put into such unnatural positions. As my esophagus was removed along with the tumour, my stomach was pulled up into the open space and shaped into a tube that is attached to the throat. In time when the body has adapted to this unnatural situation, I will be able to eat most foods and drink, but in much smaller amounts and chewed a lot more than we are used to. I am presently at the point where I am being tested like a Guiney pig as to what I can and can’t consume. When I over indulge or eat something my body can’t tolerate, it comes up with nothing to stop it, (no sphincter valve to close the tummy from the throat), along with stomach bile. I will remember to avoid that the next time. I also have to sleep in an upright position to avoid stomach acids flowing into my mouth. Not pleasant! One sleeping position for now, on my back.
My journey has been most interesting and educational; however, I would not recommend it. I count myself as being a very lucky man to have survived such an ordeal. Cancer can be beaten and in my case by being detected early and removed asap.
Every one’s story will be different, many would rather not re visit their past experience as I have. Cancer of the esophagus is one of the worst, I am told. All cancer is bad if left to grow in your body. Early detection is the secret to extended life.
The Journey Continues.
Thank You --- to so many that have inspired me, scared me, comforted me, prayed and sent cards and emails and phone calls giving me the strength to continue the fight for survival. I thanked the surgical team following the surgery. They replied “That is what they do”, it was up to me to complete the job by being strong and renewing my new body.
Thanks to Joan, Brenda and Tammy. 12 hours of waiting while I was in the arms of God and the hands of the surgery teams. Dec. 3rd. 2018.
A special thanks to the following.
Dr. L. VanDerwalt - My family doctor, who reacted quickly and following blood samples, no time was wasted getting me into the hospital for an Endoscopy.
Dr. Dan Segal - Dan performed the Endoscopy and had the task of announcing that he was sure but tests would have to confirm that I had cancer.
Dr. Raut - My internist in St. Catherines while I was in Emergency for 5 days. Also confirmed my cancer.
Dr. Blewett - surgeon, St.Catherines hospital, advised me that surgery was not possible in his hospital. He kept track of my progress through his associate, Dr. Shargall.
Dr. Yashit - was Dr. Blewitt’s assistant and associate. She was working with Dr.Blewitt as she was re-entering school to study to be a surgeon. She observed an operation on Esophagus cancer and warned me that it was something to avoid if possible.
Suzanne Johnston RN,PhD President St. Catharines Hospital.
Martin J. Ruaux RN MHM (chief nursing officer) “ “
Derek McNally Exec. VP clinical services “ “
The three above were kind and helped me into a regular room in the hospital after over 100 hours in Emergency.
Dr. Sur - Brachytherepy Radiation, Juravinski clinic Hamilton. Dr. Sur spent time with me and encouraged me to continue with my series of tests through to their conclusion as the surgeons would have more information after the tests that could change my outcome. This should have been done by my Oncologist.
Dr. Yaron Shargall MD. FRCS (C) My consultation was two days after Dr. Sur and he was correct. Because my tests could not find any other cancer in my body and because I was diagnosed early and more radiation and chemo were not necessary, I could go directly into surgery within two weeks. Dr. Shargall gave me a 95% guarantee recovery from the surgery only, other possible complications such as blood clots, infection, heart problems would bring my recovery down by about 40%. I had to jump at my new lease on life. Thank you again Dr. Shargall. I am trying to bring the odds down every day and I think it is working.
Dr. Y - oncologist, the only disappointment in all the human contact I had to deal with in this journey. She dismissed me from her case load prior to all my consultations and wished me luck as she once again confirmed that my life expectancy was about six months.
Quote “If you condone incompetency, you guarantee it’s survival” Peter Turrell.
Joan and I have had a life together for over 60 years. That in itself is quite an accomplishment. We have had a life quite different than most of our friends and relatives. Probably in some part because of my curious nature experiencing many different lifestyles. Also, there is no doubt in my mind being blessed with two profoundly deaf boys would take us down a road less travelled. One thing that all humans experience is the finality of death to this world. At my age of 82, I was told by my doctors that I had cancer and only 6 months to live. At this ripe age I thought at first that was good news, (I have been living day to day) but with a little more reflection the reality kicked in. I will never see another spring or summer. I will never see my grandsons married or great grand children. There are many things I haven’t been able to do these last few years but I still didn’t lose hope that I might swing a golf club again or crew on a sail boat, or walk through a silent and serene forest as I did as a boy. Not many more sunsets would I see or hear the ocean crash onto the beach. I felt so blessed that there was nothing left on my bucket list to do so the wait was going to be silent and lonely and from all that I had been told, death was going to be very harsh and painful.
Joan, my partner for so many years is also failing and we realise how much we depend on one another. How will she make out without me to remind her and bother her about little things that need attention daily? Can she carry on in our lovely home? What if she has a spell and I am not there for her? Will she take care of herself and get her meals on time? Now the wheels are turning and facing a terrible painful death, I was quite resigned to meeting my maker and hopefully seeing all my dearly departed family and friends, and to be with my Lord God in Heaven. There was little time to feel sorry for myself as I was lined up for tests and exams. and procedures in Welland, St.Catherines and Hamilton. My Oncologist made all the arrangements but failed to give me any information on any of the appointments. Thanks to the web sites we were able to have some idea what to expect. My stress wondering how Joan would survive on her own was put to rest as her niece Brenda, offered to move into our lower level and take up residency to be a companion for my dear sweet wife. Brenda was in the throws of looking for a new space and there we were. Two problems solved with little discussion.
It has been 11 weeks since my surgery and I seem to be recovering pretty well. A new bed has arrived with a power lift to keep me in an elevated position while sleeping and it seems to be working well. A power lift to get me up in the bed would be helpful. I have been taken off my feeding tube that was to keep my food intake up so I would not loose any weight. The liquid was sent by a pump into my upper intestines avoiding my much smaller stomach and was formulated to give me adequate nourishment. I must always try to have 6 small meals a day and will always need to be elevated when sleeping. Small sacrifices for a new life.
Paul D. Scott