Hi everyone,

My sister (70 yrs. old, 4 surgeries and 2 series of radiation for SCC on her tongue) is about 80% convinced that her quality of life would be worse with the currently proposed glossectomy. We've talked to hospice, but she wants to know if anyone is willing to share their experience of what it was like during the last few months. The surgeon is painting a gruesome picture if she doesn't have surgery, and she just wants to hear from someone else's perspective if possible.

As for me, my heart is breaking, but I'd probably make the same choice if it were me. Any personal experience is much appreciated. Bless you all....
DenverSis

DenverSis,

I can not tell you or your sister about the final stages of life would be like. I can tell you as a caregiver for a terminally ill mother was like.

My mother was given a few weeks to live with ovarian cancer spreading throughout her body, her bowels closed from obstructive tumors, her brain riddle with mets. She was given a small chance to gain extra days with brain radiation and she took the plunge. She then was given the opportunity to take on some more chemo to minimize the pain and it ultimately gave her 8 more months. She never really walked much or got out of bed much the last 7 months, after the radiation.

In some cases, treatment to minimize pain and help with other symptoms is allowed in hospice. The care she received was outstanding. She had a person come by twice a week (it could have been more) and give her a bath, massage her feet and rub oil and lotion all over her to keep her skin from drying out. She had a nurse that checked in every week, more often if we requested it. She had access to a social worker, a chaplain and a pain management doctor.

As I said, the care was outstanding and everybody involved went out of their way to make the "rest of her life the best of her life". We adopted this slogan early on and this became our focus for all decisions. If the answered did this, it was acceptable.

My mother never spoke of pain, seldom complained and we just took each day as it came. She finally stopped all treatment because the chemo was making her so ill and she would barely regain her strength in time for the next round.

I hope this helps.

Ed

Denver

I only have my fathers emperience to go by he was
told 6months to a year. Dr offered chemo and rad. to help him. He had bladder cancer and was told it would be very painful. So he took the chemo and rad. he was about two weeks into treatment when he got really sick. We contacted Hospice they were great. He lived only about 4wks. after being told 6months, but he actually told us he wouldn't change anything. My only regret is I made him go to the hospital, when the only thing he wanted was to stay at home, and let hospice care for him. But the end was very peaceful, it was not all the pain that the Dr. had told him about. Everyone is different, my dad was a very strong man. This is just a very hard thing to deal with, hang in there and let your sister know you are there for her what ever she needs. Take good care of yourself!!!

DenverSis,

I can't tell you too much because we only had hospice in for the last few days of Heather's life. I can tell you that I will be forever grateful that a hospice nurse was there the day Heather died. If not for her being there and recognizing the symptoms that portended the end, I never would have experienced the final communication that I had with my daughter.

Heather had been heavily sedated for days because it was the only way to keep the pain at bay. (A tumor had destroyed her vertebrae which left her totally paralyzed, but gave her excruciating pain that even massive doses of morphine couldn't control.) When the nurse realized that the end was near, she spoke firmly and loudly to Heather to wake her. The nurse said many people try to hold onto life longer because they don't want to upset their loved ones. She wanted to assure Heather that it was okay for her to let go. She assured her that we, her family, were okay with her decision and that we would take good care of her daughter Cati for her. I had the chance to say goodbye and tell her how much I loved her and she was able to squeeze my hand in a final farewell. That alone was amazing because she had been unable to move anything but her eyes for the last few days. But she somehow found the strength to squeeze my hand.

I would never have had that final, amazing experience if not for the hospice nurse being there. The nurse also recognized symptoms that were missed by the other nurse. The other nurse was wonderful, but hospice nurses are trained specifically in end-of-life issues. I think they are more aware of the subtle changes that often signal the end.

I am so sorry that you and your sister have to go through this, but I hope this has helped a little.

Rainbows & hugs,
Rosie

I had a similar experience to Joan. My dad was Dx'd with non-hodgkins lymphoma and given 6 months also and survived about a month (actually you have to have 6 months or less to live or they can't write the order for hospice care until then). I think in many cases the doctors wait too long to order hospice care. Sometimes you have to press them (as I did). Because the body starts to shut down in the end phases the pain centers shut down as well mitigating the pain issues. My dad also wanted to be at home in his own bed which we were able to honor. Although given whatever pain meds he wanted, his preference was plain old tylenol. He wanted a clear head throughout everything and was quite lucid right up until the end. It wasn't a pretty death -he basically died of cachexia (wasting). He simply just was not able to eat much in the end. He was about 80 lbs at his death. It was hard to watch -at times in many ways it was like leaving a flashlight on and watching the bulb dim until it flickers out. There are many markers along the way to indicate and predict status and the hospice people will educate all of the caregivers about that.

The hospice people were terrific. They took the mystery out of it, provided training and counseling, visiting nurses, bathers, assist devices, nutritional aids, pain management, etc. They were only a phone call away at all times. I would trust them if I, personally, were in that situation.

Like Ed's mom, my dad never complained and told me the day before he died that he was "going to beat it" - and he did in his own way. We had time to express to each other how we felt and it was a profoundly spiritual experience.

Hi DenverSis:

Warm thoughts as you walk beside your sister while she makes a heartwrenching decision.As a nurse, I have had lots of opportunities to work with hospice nurses and oncology patients who value their services. By far, the most stunningly good thing about hospice care is that the client and family are in charge and the client's wishes for a pain-free dignified death (however the client sees that going) are honored. Further,the client's family is integral to the decision makig ever step of the way. Hospice care is about relationship with the client and caregivers (including MD's., nurses, and clergy if you want them) as a collaborative team.

Please keep us posted.

Kim

Hello everyone,

My father died one year ago today at 51 from oral cancer of tongue and throat, after almost 2 years of fighting a losing battle Hospice was called a week before he died and he did stay at home and I never left his side for 6 days. It was absolutly the worst time in my life and has been ever since but today I am not going to dwell but remember all the good times

Kelly, Sorry for such a bad anniversary. Your father was a lucky man to have someone to be with him during his last troubles. Remembering the good times is all any of us really has with each other. It is better to dwell in the silver lining than in the stormy part of the cloud, and every cloud has both. You can choose to live in the stormy part or the silver lining part. Silver lining is better. Keep dwelling in the good times, I'm sure your father would prefer that. I will pray for your relief from the worst time in your life.