Hi Dee
Don't count on them finding the primary. I had lumps in my neck went through all the waste of time tests like xrays ultra sounds, ct scans etc.......I don't know why they didn't just do a biopsy from the start, after all, you could see it and feel it, didn't need scans to tell them it was there. All these tests lead to.......a biopsy......none of the scans can tell you what it is 100% for sure. Anyway, biopsies determined it was squamous cell carcinoma which had spread to the lymph glands in my neck. One of the lumps was 32 mm, plus a few much small ones. Went down to almost my collar bone with the big lump under my jaw back towards my ear. They never found the primary even after general anesthetic and taking tissue samples from all the suspect places. So they just decided to hit me with radiation from about my ear lobes down to my collar bones......all the way around.....through mouth, throat, everything. I had a feeding tube fitted in my stomach because they said I wont be able to eat after a while. I also had 7 rounds of cisplatin at same time. I heard what nightmare it was going to be. Frankly, I cruised it. Eating all the way up to six weeks......and then still able to drink......so I just drank the formula that was meant for my feeding tube, by the bucket load. Tasted crap, but everything I put in my mouth tasted like either shit, or cardboard. About ten days after radiation stopped, I was back to eating. They gave my oral morphine to use at home....and pain killer patches. I didnt use much of either.....but I did use bucket load of the mouth numbing oral solution to numb my mouth to the burning feeling........it worked but only because I used it differently then recommended. I just took tiny sips and let it sit in my mouth and wooshed it around and let it trickle down my throat.....couple of little sips an hour like this and was able to stay basically pain free. 3 months after treatment, pet scan showed all clear. Since then all my post treatment tests have been cancelled and turned into phone consultations due to covidphobia. I have a examination next month. I feel good. So far I've avoided most side affects of radiation, even my saliva production is pretty good. I had 35 rad treatments at pretty high doses, and came out the other side smelling like a rose.
I'm like you, live alone, and not much family. My only son had been getting more and more distant for a couple of years before this. Upon hearing I had cancer, he starting staying in touch more, but then went silent. My txts when unanswered, and so did my calls. I got pretty pissed off about it......and sent him a txt telling him so. He just hit the roof.....started a big argument which ended in him telling me to piss of and he wants nothing to do with me anymore. I haven't heard from him since. My bro is really the only close family member I have left who lives in the same state. A lot of my friends, most in fact....demonstrated that they are in fact.....not really friends after I got sick. Anyway, boring stories. We are all there to maybe chat to people who understand our situation, and how we feel......the loneliness, anxiety, fear, etc. Your journey looks like it's starting out just as mine did.......and I went through the treatment and they hit me hard......and so far.......I'm looking good. You can do it too. Stu
