Stephany,
I'm sorry I didn't reply last night. I'm really having trouble deciding how to answer your questions. I'm tempted to take the chicken's way out and just decline to comment. It's really hard to know how to answer something like that and I know sometimes I upset people by being so frank. And for some reason, Heather has been on my mind a lot lately and I just don't know that I am in a good frame of mind to comment reasonably. But I will try.

As far as the issue of pain, the worst of Heather's pain came from the tumor in her spine. The pain in her mouth and throat was pretty well controlled by morphine. Once the spinal column is compromised, I don't know if there is any pain reliever that will work well, but morphine and other heavy duty narcotics work very well on controlling most other pain. Your mom should probably be on an IV drip of morphine, so she can have round-the-clock, controlled pain relief. IF morphine doesn't work or she has a reaction to it, there are many others that can be tried, but the key thing is to have the controlled release through an IV. We had a portable IV pump at home to administer the morphine. I did learn to change the bags myself, but generally the home health nurses do that and there is no need for you or your family to have to worry with it. You asked if the pain would get worse. It might not, but many times it does. It depends on where the tumor(s) are, how big they grow, whether they press on any nerves, etc. That is why it is important to get your mom some good consistent pain relief now, before it gets worse.

If the doctors have definitely said there will be no more treatment, you should also start to think about calling a hospice care group. They are experts in pain management and they can help with a multitude of things, including administration of all your mom's meds. They usually have volunteers that can come in to help with personal care issues if needed and also just to give the family a break from caregiving.

As to how long your mom might have, I don't think I can touch that question with a 10' pole. There are just too many variables. If your mom gets some good nutrition, that may give her the strength to fight longer. It didn't really help Heather, but her problems with the PEG tube started in Dec. For 6 months, we fought with the PEG and with the doctors until they finally got wise and put in a PEG that actually worked. (Altogether, she had 4 PEGs.) Unfortunately, her digestive system had been under too much stress for too long a time and she ended up having to go on IV feedings. I suspect the lack of proper nutrition for such a long time contributed to her quick decline. Had she had good nutrition all along and if the tumor had not started to destroy her spine, I think she would have had several more months.

Even though I do see some similarities between your mom's case and Heather's, I also see many differences and for that reason, I really can't comment on how much time your mom might have left. Even most doctors won't narrow it down much. 'Less than a year' could end up being 2 weeks, 2 months or 2 years. I know that's no help to you, but I wouldn't feel comfortable even hazarding a guess. I will say that when Heather's recurrence was diagnosed, the surgeon said she had 'less than a year' and Heather lived about 6 1/2 months. And again, I think she would have lived longer if she had not had spinal column involvement. Just my personal, non-medical opinion.

I'm sorry for being so windy. I don't think I'm capable of a succinct reply. I always write a book! I just wish I had something to say that would be of real value to you. Hopefully, some of this will help a little.

Rosie

Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.