My Story Part 4

Head and Neck Cancer Survivor -My Story Part 4

I can not give the name of the clinic or doctors where I had the low dose radiation and hyperthermia treatments. I will tell you that they told me I should get down there right away, that week. They told me that I would be there  6-8 weeks and could rent an apartment from them across the street.

So, I got the OK from the insurance company and drove the 16 hours to get there. I met the radiology oncologist and told me that I would be there for 3-5 months. I felt that I had been misled but what could I do. What I should have done is get back in my car and headed home but they played on my concerns about the side effects of conventional treatment. They told me that the side effects from their treatment would be temporary and that they could definitely cure me. So I stayed. Silly me.

The apartment was a three bedroom to be shared with other patients all paying $1000 a month each. The whole operation seemed very unprofessional, but I was committed now and started treatments five days a week. Whenever there was a holiday or the equipment had broken down everyone groaned.
I got to know other patients in the waiting room who had been there for over a year. It could get discouraging.

About two weeks into the process I started having terrible mouth sores and because of the steroids they gave I couldn't sleep. I was miserable. My digestive tract was a mess also. I couldn't eat anything solid so I ordered a Vitamix and what a blessing that has been. My meals were liquid, but I still had constipation badly. I was losing weight and strength.

I took a week off to recuperate and meet my family for a much needed vacation. Things leveled out somewhat during that week. I still had the mouth sores and thrush, but not quite as intense. So, the long sad trip back to the clinic and what I hoped was a only eight more weeks of treatment.

As my mouth healed I was able to eat some solid foods again but they had to be soft, baked potatoes and the like. I could not put anything in my mouth that was spicy or minty or too hot. The thrush magnified it but the problem was primarily from the radiation.

My wife, in speaking with the dentist back home told him about what I was going through and the dentist asked if I had gone through any pretreatment dental evaluation? Well, nobody had said anything about seeing a dentist, certainly not the clinic I was getting treated in. Besides my treatment, there was no communication at all about  nutrition or about what to expect or what to do when something happened. As I went along and spoke with other patients I started learning things to ask. My wonderful wife is a great questioner, but as for me; not so much. Do not trust these people, ask lots and lots of questions. Go home, study, write down questions. The internet has a lot of helpful information from others who have been through it. Ask, ask, ask, then ask some more. Doctors are busy and they can make that very evident but it's your life we're messing with here.