After receiving the devastating diagnosis while at Princess Margaret hospital in Toronto we headed home. I cried all the way home from Toronto and my husband just kept holding my hand reassuring me that I’d be ok. That I’d be okay … Not him. He was so calm, so loving and so supportive. I asked him .. What do you want to do? Is there anything we can do now that you have always wished to do? He just smiled that lopsided smile of his at me and said we have always done whatever we wanted to do … He was quite happy just to spend time with me.
We got home and the family doctor called saying he received the orders from Princess Margaret that a stent needed to be inserted as soon as possible. He told us the specialist would contact us the next day and it would likely be done on the Friday. We waited.
On Friday morning I contact the specialist’s office since we had not heard from them. The nurse said the specialist was aware of the orders but wanted to see us the following Wednesday and he would decide when the stent would be insterted. I called Princess Margaret and they told us to go to the hospital’s emergency ward and tell them to call Princess Margaret directly for orders. We went in at 10:30 and sat there until 5 pm. At that time a doctor came in and told us he was unable to get the operating room to do the procedure due to budget cuts. We had to return on Monday at 6 am but he’d do it then.
We went back on Monday and sat there. At 11 am the Doctor came out and told us he had been bumped by that specialist and that we were to return the next day. At this point John was turning yellow.
Please remember the clock is counting down and these were our “quality of life” days.
We returned at 6 am on Tuesday morning and the specialist himself announced he’d be doing the procedure. He failed. He told us that they would try again in the afternoon going in through John’s back. That failed. Apparently the tumour had grown and was squeezing the gall bladder making it difficult to insert the stent.
They had to admit John that day into the hospital. Neither of us were happy about this as it was taking time away from us being together. Plus it was tax season. John desperately wanted to have one last tax season. He loved his clients and wanted to be able to see all of them during this time.
Wednesday the specialist tried again and failed. He reassured me it would be done the next day because he had “slashed” at the tumour loosening its grip on the organs. John was getting yellower by the moment (I told him he started to look like a Simpson’s character) and he was tired.
On Thursday the doctor we saw in emergency originally successfully inserted the stent. If only he had been allowed to do the procedure a week earlier!
The specialist released John from the hospital on the Friday morning saying everything was good.
John was feeling good and talked to several clients on the Friday. His only complaint was he felt a tightness across his belly. Other than that he was his old self.
The next day we worked in our basement office together on tax returns. In the afternoon the Blue Jays were playing so he went upstairs to watch the game while I continued to work. About an hour later I heard a thud. I thought he was trying to get my attention so that I’d come upstairs to see a particular play between the teams. When I got upstairs he was on the floor, feverish and unconscious. I yelled for my son and called 911.
The ambulance came and within minutes the paramedic announced John was in septic shock. They rushed him to the hospital and his temperature was over 105 degrees. When we got there they put us in a little room and left us there. They gave me a cloth and a bucket of water to keep him cool with (there was an ice machine just outside the room) and then basically ignored us for 24 hours while they grew the culture from his blood.
John was so ill. He was burning to touch and his sugar levels were out of control. I had to go out every four hours to ask them to check his blood. I didn’t want to leave him for a minute since I was afraid he’d fall or something. My son would come to relieve me so I could get some food for us or just to let me stretch my legs. I was exhausted but refused to leave John.
At one point John opened his eyes and looked at me and asked why I was there. I replied because he was ill. He said, “go home, there are tax returns to do.” I said no because I wanted to be with him. He became quite stern, looking at me and saying, “honey, this is what we do … Now go do it … We serve our clients”. So I packed up, went over to the hospital cafeteria and got a tea and came back. When I walked back in the room I told him I’d just returned from working on the tax returns and was finished. He believed me.
Finally a doctor came in and gave us the results. Apparently … Big announcement here … John was in SEPTIC SHOCK. Really? Everyone knew that by the point. Then the doctor starts mumbling and was quite uneasy as he asked questions like, well .. “If we found you on the floor .. What would you like us to do?”, “if your heart stops, what should we do?” We were so confused and said this is just an infection, please treat it and he ran out saying he’d get another doctor to talk to us. He kept mumbling asking us for our yellow file. We had no idea what the yellow file was all about.
The doctor he sent in was from the infectious control unit. He first apologized for the infection saying we should never have been sent home without antibiotics. He stated the hospital tries to stay clean but it is a hotbed of germs and disease and they can’t stay on top of it. He told us over and over again that John should never have been sent home after gut surgery without antibiotics. He explained to us that for the rest of John’s expected life he would need to be hooked up to an IV with antibiotics in it. So much for quality of life.
At this point it was Sunday night and they admitted John to the cancer wing until they could get the infection under control. He got settled into the room and they were bombarding him with antibiotics so I went home to work on tax returns.
For the next four days John fought the infection. The ass-monkey of a specialist had the nerve to come to the room on Monday and tell John that he was fine and was to be released Tuesday. I flipped out when I heard this as John was not well and I knew I couldn’t handle him at home yet. He was confused and weak. I went to see John’s nurse and he explained to me that specialist had no standing on that floor (since it was dedicated to cancer patients only) and that John would not be released for several days.
By this time the word was out about John’s illness. There was a constant stream of visitors during the daytime and phone calls at the house inquiring about him. Clients showed up at the house sobbing, telling me how John saved them in one way or another. John was a quiet man, his clients would talk and talk and he would just listen and then at the end he would offer some sage advice. John would find a way out of the mess for the client and all would end up ok.
I was exhausted. I was at the hospital as much as possible and then working on the tax returns during the rest of the time. In the evening I would go to the hospital and say “shove a bum chum” and John would move over and hold me while I cried or napped. He would just look at me and tell me everything would be ok. He said I was strong, said I’d be alright and said he would always be with me.
John was not a religious man. He believed in a higher place but not in organized religion. We were both raised Roman Catholics but the church didn’t accept us as we were both married previously. As a result churches were not part of our lives. But he did believe there was something after death. He accepted his death. He felt no anger towards the doctors who misdiagnosed him, felt no anger towards the hospital and never once had the “why me” time. He just accepted the illness like he did everything else in his life.
One day while I was recovering in the hospital from the septic shock my daughter Amanda and I were sitting in his hospital room talking to him. He kept looking just past us and I asked him what he was looking at. He smiled at us and said “your dad is here” and he just kept talking to us. Amanda started to cry but John just kept talking like nothing was out of the ordinary. Then suddenly he said, “oh your dad is leaving for now .. He is going down that lane”. I knew then John was not afraid to die.
On Friday, April 22nd the hospital released John and we drove home. He was quiet in the car. I asked him what he was thinking and he said he knew it was the last time he’d be in the car. He wanted to take it all in. I squeezed his hand and through my tears drove the rest of the way home.