Just a quick update - I am doing well! Last day of rads was Jul 20th, 3rd chemo was cancelled. Starting a few days after rads was the worst 2 weeks of all. There were about 5 days that I barely spoke due to pain in my mouth. My RO doubled my pain meds and that made it bearable. I think that was the only 5 days where I used just my feeding tube. Other than those days I ate a bit of pudding or ice cream or yogurt every day during treatment. Drinking liquids was more of a challenge as every single liquid tasted unbelievably gross. That has unfortunately continued, the only thing I can drink right now is Apple juice, although at least I can now dilute it and I'm up to about 3/4 water. I'm still using my mouthwash every day. I still have significant numbness in my neck and the side of my face, and my thumb/hand/lower forearm. I'm going to make appts again with Physio and speech pathology to work on my hand mobility, and speech. I don't have much pain on swallowing anymore, although I do have very effortful swallows. I've eaten only real food for 5 or 6 days now, and am just using my feeding tube for hydration now. The foods I can eat are very limited, soft foods only, and it's difficult to swallow a lot of it, but I'm getting enough nutrition. I've lost 35 pounds overall since the dentist found the lesion in my mouth at the beginning of January, half before surgery due to pain, 8 lbs in the hospital, and the rest during and after treatment. I see my RO and my MO at the end of the month. I will probably go back to work (desk job) at the end of Sept, probably half time for a couple weeks to start. From my Apr 10th surgery date that would put me off work 5 1/2 or 6 mos. The biggest issue for me right now is fatigue - I feel pretty good if I don't do anything! But I've been getting out for a 30 minute walk with our dog most days for about a week now. I got absolutely no exercise at all for about a month, so I'm glad to be able to do something active.
I have had a bit of a coughing issue for a couple weeks. It struck me one night that that could be a symptom of lung mets. I'm not actually worried about that, if I'm worried about anything I'm worried about a local recurrence, but my RO is sending me for a chest X-ray this week just to see so she has those results when I see her end of the month.
So - things get better! I think I've done really well overall, although it sure didn't feel like it on many days. My RO also says I've done much better than she expected. Even for thinking I've done really well though I know I have a long way to go yet, but I'm happy to be here on this side of treatment and on the way up.
