Hi Donna, Jack is doing well. He's been tired lately but that turned out to be a thyroid problem - very common after radiation. He's been put on medication for that and it should improve. A couple of suggestions on the pain management, especially when radiation starts, is the fentanyl patch (starts at a dose of 25 and goes up as needed); using the existing pain medication on an exact schedule - not waiting until she is pain, that doesn't offer good control; or "layering" medication, using the prescription one followed 2 hours later by an extra strength tylenol to boost the effect and provide breakthrough control.

Jack hates taking medication, it was a new experience for him. So naturally the pills didn't work because he didn't take them often enough. For him the patch was great, it's a constant level released over time and you only change it every 3 days. He wasn't zonked out on it like he was with the others but everyone has different experiences.

I know that feeling of not understanding what is happening. I think you need to give yourself a break on that one. I'm a nurse who works in hospice and trust me I was not prepared to be a caregiver to my husband. The same is true for patients. There is no one on this forum who felt prepared for this. It's not a natural skill set, it's just a situation that we are all thrown into, and we do the best we can.

I'm not going to tell you not to worry when your Mom gets something that could be a symptom, just try to not get ahead of the information you have at any point in time. Get it all checked out by the medical team because that's the only way to know for sure if it's a problem. As far as understanding our adult relationships with our parents - good luck with that one. If you figure it out you must tell the rest of us. It's one of those mysteries of life things.

I'm doing well - now. You should have seen me a year ago. Of course I still worry that the cancer is going to come back, but not at the same raw pain level as last year. It will always be a fear, but it no longer dominates our every waking moment. Remember that we are not our diseases, we're just people dealing with something extraordinary that we did not chose. For what it's worth Jack and I can now have entire conversations that have nothing to do with cancer. You'll get there too but it takes time, and it's not now at the beginning of treatment. You're doing great. Your Mom is lucky to have you.

Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.