Dear Stephany,

You live in my neck of the woods, which hospital is your Mom at?? That is so scary!! I have been reading your posts and feel so bad for all you are going through with your Mom. My heart goes out to you. I was very close with my Mom too (she died 5 years ago) so I can totally relate to all you are feeling. You have been the BEST daughter, and I know your Mom appreciates it. I will pray everything turns out for the best and you can get her home soon. You take care of yourself OK and keep us posted....

Hugs,

Shelley

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

Rosie,

Personally, I like you windy. :-)

You explain yourself well and you are always on target and the fact that you are so willing to share what must be the hardest thing you have ever been forced to deal with just makes me more in awe.

Sometimes when I think about the possibility of my husband not surviving I often wonder how I will move on. I think that you and I have discussed this subject before and you were very frank, which I appreciated greatly. You help to remind me that even if the worst happens, I will get up the next day and I will find a way to make it.

The fact that you continue to talk to people here is something that impresses me most.

I think that the question of how long for any of us is always lurking somewhere in our gray matter, but it has become more forefront since we all have had to face this "life robbing" disease.

It has changed everything and it is a permanent change. I think that I have struggled most with the grief of losing the life we had. I know that we can have a new and better life after this and I am striving for that everyday, but in the beginning, it was the loss of the life we had that was hard.

I sometimes wake in the night because I was dreaming that he was gone and I have to look across the bed to see he is still here. I have trouble sleeping at night because I get more time with him just in case. I want to make the clock stop and I want things to be different and coming to grips with these realities has been emotionally expensive.

One of the things that helps me the most is coming here to this website. I can never thank Dan enough for pointing me this way. If I didn't have you all to talk to about this stuff I would have already had a breakdown I am sure.

I have friends and family but, as I am sure you will agree, misery loves company and there is nothing better than knowing that you are talking to someone who truly understands. It is one of the reasons that my therapist and I get along so well. She lost her mother and her younger sister to cancer so I know when I talk to her that she understands what I mean and how I feel. Just like here.

Keep being windy. I love to read your messages and I gain strength from knowing that it is possible to continue if the worst does happen. I have to hold onto that so I can make it through each day.

So Thanks Rosie!!!

Cindy

Stephanie,
I'm so sorry I have been not been in touch for such a long time....My heart truly goes out to you and your family. I've seen your posts the past few times that I logged on and I have been praying so hard that it is not a recurrance. I will be keeping your mom in my prayers and you hang in there. If you need anything at all please send me a private message or call anytime you need to.

Love and hugs,
Dani

Rosie,

I agree with Cindy 100% Your posts are so helpful and I am amazed at your strength...I have sent you messages before about how much I appreciate your thought and care that you show in this forum to me and others here. Especially with all you have been through!!

I just came home from the hospital and it is almost midnight...and my mom is going to get hospice care. Thank you Rosie....

I have another question....My mom had excrutiating pain tonight because mucus had dried up in her mouth and she cant swallow. She is on major pain meds, the feeding tube, and oxygen. She is basically miserable and wants to die at this point. She wrote me a note tonight to "let go". That was very hard to read...She knows how much I love her..She is my best friend and I am losing her..This is awful...But, I have realized that it is better for her not to suffer. That is why I asked you that Rosie. I just cant bear the thought of months of suffering for my mom. She has had enough of the fight and pain. I am distraught.

Thanks for your support once again....I will write more later..Too choked up at this point to continue typing.

Lots of Thanks
Stephany

Question...

Oops I forgot the q. The q is what can help her in taking out the dried mucus because the pain is so awful for her to even moist her mouth with the sponge and water to get the mucus out. Please let me know as I am going to the hospital again in the morning..Thanks to anyone who can help me with this.
Stephany

Hang in there Stephany,

I want to say something to try to help and yet I have no words of wisdom. I have no words at all. I have been thinking about you all day. I would give you a hug but my arms aren't quite long enough to reach from Texas to California. So maybe you can take this virtual hug.

Sometimes we really need them. I went last night to a meeting, that under normal circumstance I would attend as the member I am, but I couldn't stay long. I just had a drink and said hi to my friends and then I had to go pick up the kids.

I don't really know why I went. But I got a lot of hugs and they were good and sincere and maybe just what I needed. So I am sending some to you too.

Stay strong, we are here whenever you need us.

Cindy

Cindy,

Thanks for the hug..Sending you a big one back....Thanks so much...I have been sick inside...wondering how long my mom has..Is today the day??? Is tomorrow the day?? This is so hard Cindy.....I just wish there was something I could do for her, but there is not...IT is killing me....I have to leave for work and it is 6:30 am..Just a few hours since I went to sleep and I am sooo tired and emotionally drained....I am only working a few hours and then back to the hospital....

I am so glad you saw your friends even if for a minute..I had plans last night (standing plans every week) But canceled because of my mom...I think it is important to go and have that support...I will try to keep my appts even if brief from now on...

Time to hit Malibu Canyon in this rain mess :-(

See you later

Love
Stephany

Stephany,

Sorry I didn't catch your post last night. The only thing that worked well for Heather in getting the mucous out was a suction machine. Heather had a Devilbis (sp?) There is also one made by Yankueur (sp?). They are all similar to the suction machines used by dentists. Heather's mucous was not very dry, though. I'm not sure if it would work well with dry stuff, but if your mom could get enough water in her mouth to get it moist, it should work very well.

It should not be painful for her because the suction tube can draw the mucous out with only a light touch. The hospital Heather was in had units on the wall in many of the rooms, but we found most of them didn't work very well. They just weren't strong enough, esp. the ones on the higher floors. I think they may have been too far from the power source. Anyway, we took the portable one with us and used it the entire 11 weeks Heather that Heather was in the hospital. It was noisy, but it worked. Ours had a power cord to plug in and also a battery backup.

If her hospital room doesn't have a suction unit, maybe she can be moved to a room that does. Or better yet, ask your mom's doc to order a portable one for her. Then it can go home with her when she leaves the hospital.

I am so sorry your mom is in such pain. Have you asked the docs or nurses why they can't get it under control? I would demand some answers. I'll try to check the forum tonight and see if I can catch you online. There is probably more I should say, but I will wait to see how your mom did today.

Rosie

Hello Rosie,

My mom is home now in a hospital bed with hospice care only coming a couple days a week. I am worried my dad cant handle it because it is so much to do, so we are looking into getting a nurse. Does insurance or medicare usually cover a nurse? I know hospice is covered. She is not doing well at all. A lot of pain and discomfort. I am not going to work tomorrow and am spending time with her so I will look into getting the portable suction for her...You are right about getting it moist fo rthe suction to work..But....She is dry and when we try to moisten her mouth, that is when she gets in excrutiating pain...Thanks Rosie again!
Love
Stephany