Suzi,
Anne-Marie is right, everyone does react differently.
I wish that they would tell us just how difficult and frustrating the post tx's can be. I can tell you from my experience, there are good days and bad ones. What we are going through now are good hours and not so good. I use a lot of positive thinking, I try to fins apositive spin in everything. It's not easy sometimes. Then....when I get alone and jump on here I cry and vent, or like my last one, I celebrate.
My mom has a very strong sense of being. I know if it's up to her, she'll get through all this.
Give here my best. You are all in my thoughts.
Donna

Suzi,
Anne-Marie is right, everyone does react differently.
I wish that they would tell us just how difficult and frustrating the post tx's can be. I can tell you from my experience, there are good days and bad ones. What we are going through now are good hours and not so good. I use a lot of positive thinking, I try to fins apositive spin in everything. It's not easy sometimes. Then....when I get alone and jump on here I cry and vent, or like my last one, I celebrate.
My mom has a very strong sense of being. I know if it's up to her, she'll get through all this.
Give here my best. You are all in my thoughts.
Donna

No, they never found the cause of swelling or infection. Steriods helped only briefly. She saw the ENT(who originally diagonsed the cancer) today for a follow-up. He feels "something" on her tongue -- thinks its the tumor growing again but not sure. She will have CT scan Thursday to check lungs and neck to see if it has spread. She's at peace. She's ready to die, but fears a painful death.

Sorry, Anne-Marie, I added a signature, but failed to make it the default. Hopefully it will appear on this one.

Suzi - your signature info looks just fine! It helps everyone to better respond to your comments or questions. You mentioned your Mom refused surgery. What kind of surgery did the doctors recommend and was it because of the results of a biopsy? I'm so sorry she is having to go thru this and I know it must be really hard on you, too. Hope everything goes well on Thursday with the CT scan.

When my mom first found the sore on her tongue, neither she nor the oral surgeon thought it serious. (She had something similar 10 years ago, it was removed in the doc's office, end of story.) She waited a month or so to have this one biopsied because of my niece's wedding -- just in case there was more to this one than before. As soon as she had the biopsy, she started having a lot of pain, was unable to wear dentures, eat, etc. Pathology came back saying it was malignant, but oral surgeon still said, "No problem, we just need to take a little more tissue." Within a few weeks she had unbearable pain, was sent to the ENT who knew it was serious and sent her to MUSC (Charleston) to meet with a surgeon. The surgeon wanted to remove large portion of tongue, section of jaw, and some lymph nodes plus reconstruction. This was really the only course of treatment he offered. After hearing about the recovery time, she decided against it because of her age (76), a pre-existing heart condition, etc. She thought death would be easier. A few weeks later as the pain intensified, she saw an oncologist to see if there were other options. This led to the rad/chemo. The oncologist never gave good odds of the rad/chemo being successful, but felt it was worth a try. She's not sorry she refused surgery. She doesn't think she (or my dad) could have made it through that ordeal.

I'm with your mom on that one Suzi!
When it was thought my jaw was the only tumour, the extensive surgery they suggested, plus rad and chemo, had me horrified, although I'm only 58!
If it had meant survival I THINK I would have gone for it, but am not absolutely certain.
For me the 'Quality of Life' issue was a big one and I've had a brilliant time, including a trip to California, these last few months --- in-between blood transfusions and pain and fatigue of course.
I think if I'd had the surgery in June, I would still be in a much darker place right now, with still no guarantees.
And my kids and partner understand and stand by my decisions.

Brenda