A real mixup which turned out well...

Tonight was my final clinical examination before starting treatment on Monday.

To summarise: Last Thursday I met Dr. Kanoui for the first time. Up until our meeting each doctor had said to me that I would definitely have to have x-ray therapy but that I would most likely not need chemotherapy. I knew that x-ray therapy was going to be tough. But I was able to console myself with the constant phrase "at least it's not chemo". During our meeting with Dr. Kanoui he explained that I needed to have chemotherapy and x-ray therapy together. He answered a certain number of our questions, reluctantly, and made the appointments for the x-ray therapy preparations. I therefore had an appointment on Tuesday for the x-ray therapy mask fitting, on Wednesday for the x-ray therapy simulation and on Thursday for a clinical exam with him. He called me the following day (Friday) to confirm that the group of doctors agreed, including Dr. Hagege, that chemotherapy was necessary. After I confirmed it with my doctor (Dr. Girard), who suddenly agreed with the oncologists, I agreed. Dr. Kanoui therefore set up the appointment for the operation implanting the "PAC" in my chest to facilitate the chemotherapy. We said we would talk about the rest at our exam on Thursday.

I went through Monday, Tuesday and Wednesday like a good patient. I confirmed with his assistant, who I saw on both Tuesday and Wednesday, my remaining appointments including tonight's clinical exam.

All of this to say: Desney and I arrived on time for my appointment. We were told that my appointment was to start treatment immediately and that Dr. Kanoui was not there. His assistant was not there either. However I had an appointment to start x-ray therapy. I told them that I was not starting treatment until after discussion with Dr. Kanoui and although they had apparently prepared me physically I was not yet prepared psychologically as I had questions which needed answering. After much discussion back and forth they agreed to let me see a different oncologist and to cancel this evening's treatment appointment.

We sat down in the waiting room and I was very upset. I couldn't understand how they could possible have done this to me. How they could possibly have imagined that I would start treatment like this. I asked when I would be scheduled to see Dr. Kanoui again. I was told it would be next Wednesday. That would be my third day of chemotherapy. I was therefore expected to start chemotherapy with no preparation whatsoever and no prescription for the necessary medication.

After a long wait we were ushered in to meet Dr. Mammar. What a shock. He was wonderful! He sat down and gently, calmly and kindly answered all of our questions including some we hadn't even asked yet as we expected we would have been told. We learned quite a lot. It was a true pleasure to talk with him. It turns out he's from Burgundy which we found out during the wine discussion which came in the middle of everything else...

Dr. Mammar first explained about the effects of x-ray therapy both in the short-term, long-term and forever. He is the first doctor to explain that this therapy is going to have a couple of permanent effects on me. At the minimum my neck is going to be harder and I will no longer be able to turn my head past my shoulder. It will have slightly less freedom of movement than before. It will not be debilitating but slightly limiting and it will be permanent. The x-ray therapy is going to severely affect my salivary glands. During the treatment I am going to have great difficulty swallowing and it is most likely that there will be a period during which I will not be able to eat solids. The permanent effect however is that I will have less saliva, and a dry mouth, for the rest of my life. It was at this point that I asked him about whether any of this will have any affect on my ability to taste. He started answering "well if you were a wine master..." and Desney and I both jumped in... "as a matter of fact... I am". We had a discussion about my interest in wine and how important this was to me. He too is a wine "amateur", especially growing up in Burgundy, and knows how important it can be. Unfortunately they do not have any information, yet, as regards the effects on fine-tasting capacities after the treatment. However I shouldn't count on tasting wine properly for at least a year. This was quite a blow. I have said most of my life that if there was ever a time a doctor said to me "you will live... but you'll have to stop drinking wine" I would reply "I'd rather die". I am now put before reality and am having to make another very sad choice. I'm going to have to live without wine for quite some time and just dream that my tasting capacities come back with time...

He explained the immediate effects of the x-ray therapy and he showed us pictures of what areas of my neck, chest and jaw are going to be treated. The treatment is going to be very "toxic", aggressive and quite painful. The chemotherapy is actually going to increase the negative aspects of the x-ray therapy effects. Most of that I knew already... and I also knew there wasn't anything I could do about it. The pain I'm going to have to learn to live with and get through. Easy to say at the moment...

We talked about the chemotherapy itself and he explained how it works. They'll inject it directly in to my "PAC" and I'll sit around for 2 hours while it is slowly injected through my body. I told him how worried I was about the nausea and vomiting and how sensitive my stomach is to stress and worry. I gave him a brief history of how when I get upset my stomach is the first part of my body to get upset. After a bit of discussion he prescribed the anti-nausea drugs and after explaining that I'm nauseous even before the operations/procedures start he prescribed another anti-nausea drug I can take beforehand. This is exactly what I needed. I felt very reassured.

He was also kind enough, eventually, to prescribe the patches often used on children to slightly anesthetise the skin prior to injections.

We had a bit of a talk about the dental situation and he was the first to explain that I will have to use a "goutière" (a mold which fits my teeth and which distributes extra fluoride) in my mouth for about 3 minutes a day FOR THE REST OF MY LIFE. The x-ray therapy is going to weaken my teeth and it mustn't create any infection which could touch the bones themselves...

As this meeting was such a radical change from our experiences with Dr. Kanoui I outright asked him if I could change oncologists and get him to follow me instead. This was obviously politically incorrect and he sidestepped the question. However I will be able to see him again and I will make sure I do so on the days he is at the clinic.

After all of this I agreed to a final session of pre-x-ray therapy verification where they take x-rays of me in the various positions they will use on the days of treatment. It took about 10-15 minutes and everyone was happy afterwards.

I felt much more reassured when I left and even a bit prepared to start the treatment on Monday. We went to the two departments (x-ray therapy and chemotherapy) and got my first appointment dates and times.

Got home late...

Now I have 3 days where the "only" treatment I have is my daily injection and I do not have to go back to the clinic until after the weekend!