Yesterday I checked my mouth and throat and noticed that there were white patches all over the inside of my cheeks and throat. Mucositis or Thrush, I don't know which. I also have had more phlegm in my throat and on my tongue. I gargle with salt and baking soda but it is hard to spit out as it sticks to my tongue. I have to swipe a napkin over my tongue to pull the mucus out. Some patients have used a suction machine to help with this.
Called the Haydel Clinic this morning and asked to see Dr. Scott. They squeezed me in for an appointment at 2:00. I told him everything I had been through with the nausea and the Oncologist denying that Radiation causes nausea. I asked what else could be causing the nausea and he had no answer but to say that my last blood work showed no problems. I think he believes it is the radiation too.
He gave me a script for the thrush and also a mouth rinse that will deaden the pain in my mouth so I can eat. It is called Magic Mouth Wash and contains Lidocaine, Benadryl, and Maalox. Another ingredient can be added called Nystatin to help as an anti fungal for the white patches. I asked for an order for a suction machine and he said he could not do that. It would have to come from the Oncologist.
Then I went in for my treatment at the center. My friend Evelyn came with me. When it was time to see the doctor she came in the room with me. I wanted her to be a witness in case he started with that nonsense about the radiation. However, he was on his best behavior. He even conceded that there is a small percent of patients who do experience nausea with radiation to the head and neck. So I finally got validation.
I informed him that I had just seen my family doctor and he prescribed something for the thrush and mouth pain. I asked if he was going to look at my mouth and he said yes of course I will. Well, this was the first time he actually sat in front of me with a light and a tongue depressor and looked at the condition of my mouth. So it looks like he is being cautious with me and doing what he is supposed to do.
I left the clinic and came home to nap. Later I called a couple of pharmacies to see if they would compound the Magic Mouth Wash as it does not come mixed in a bottle. I was informed that Dr. Scott would have to specify exactly what ingredients he wanted in the Wash which he did not do on the written prescription. So tomorrow I'll call him and request that he inform the pharmacy.
My mouth is getting worse. It is inflamed and food feels like sandpaper on my tongue and when I swallow. Now I have a sore spot on the right side of my tongue that hurts when I talk and eat. Both doctors looked at it today and I was encouraged by Dr. Scott to see my ENT doctor soon so he can take a look at it. I'll make an appointment tomorrow.
I can drink the protein drinks with ease. The Dietician told me to drink 3 a day and I am able to do that. However, I still have to eat some solid food. It is too soon to use the PEG tube.
The meds for the nausea do work for me but there is a chance that I will have some constipation so I'm taking a stool softener every day with the meds. I spent 16 days with nausea before I was given something to combat it. That should never have happened.
I guess I will have to fight every step of the way through my treatment to get what I need to make me as pain free as possible. I have the strength now to do that but the worse is yet to come. Twelve treatments out of 35 and I almost had to be hospitalized for dehydration. - all because of nausea going untreated. What will it be like in week 5,6, and 7? Scares the hell out of me.