I'll try to be brief, but lately it seems that once I start talking it all just pours out.. I apologize in advance if I get long winded!
My mom has been battling cancer of the trachea for the past 6 months. Small lump in Nov was the size of a golf ball by the first week of January, twice it cut off her breathing (once during the first round of Erbitux) resulting in hospitalizations. She underwent 33 rounds of radiation and things looked real good when she finished in March, docs were amazed. In April another blister looking bubble appeared on the trach area - yep it was back. She started having pain in her back and stomach.. then more and more difficulty with walking, complaining of hip pains. The neck tumor is now large enough to be interfering with breathing again, just had a 4AM trip to the ER on wednesday. While there I got a call from her oncologist, the pet she had done on Monday shows mets to the liver/pancreas/brain/bones - basically everywhere and I was told there's nothing more that can be done. They said the hospital she had been admitted to would make hospice arrangements before she went home. WRONG! They released her friday with discharge instructions that read specifically if she has breathing difficulty again - don't come back to them...seek treatment at another hospital 1 hour away (rather than the 10 minutes). They didn't inform her of the pet results so she's still unaware of why she's in so much pain. I can't seem to find the nerve to tell her <sigh> but watching her suffer is just tearing me apart. I'm a widow..mom of 5.. an only child of a divorced only child - in other words I'm handling this completely on my own, no support system whatsoever. I'd really appreciate ANY advice - and if others have been here tell me what to expect.. her GP and oncologist just hand me the same information, make her comfortable.
And I guess I should mention my mom is VERY stubborn/determined - apparently she must have gone to some medical school I am unaware of because so far she seems to think she knows best and does the opposite of whatever the docs tell her. She's down to 86 pounds - barely eating or sleeping.. just seems to be in constant pain, but unwilling to take some of the pain meds prescribed because she doesn't want to be viewed as weak, or complains they make her loopy.
I just don't know how to handle all of this
Thanks for listening - feels good to talk (or type) to someone other than my cats (and they haven't been very helpful)!
I look forward to any suggestions you all might have - the help would be appreciated because I can't continue to do this alone.
Thanks again
Kris

Kris. I cant explain how sorry I am to read of your mothers suffering. You are also in so much pain seeing her go thru this. Please seek out some help for yourself as well. This is such a stressful time. You already had enough on your plate trying to raise children by yourself. Caregivers need a break too.

Do you have many close friends? Has anyone offered their assistance? If anyone has offered to help write down their name and number. If nobody has stepped forward and offered you may need to seek out help thru your church, neighbors, business aquaintences or even other parents from your childrens friends. Now is not the time to be too proud to take help. Even if someone takes your kids out for ice cream or picks up a prescription for you. its a help. If your dont find support where I suggested, ask at the doctors office for any groups that might help. Call the American Cancer Society, they have lots of people who volunteer.

Try to get your mom on here. She could benefit from reading about pain meds. Nobody should have to hurt, it does not help. Her pain needs to be under control. Seek out the local hospice. They will help with pain meds and so much more. Its confusing why the hospital sent her home instead of helping with hospice. It also makes no sense why they dont want her to return. There has to be alot more to that story.

Wish I was of more help. Best of luck to you.

Hi Kris. I'm so sorry you are going through this and dealing with it all yourself. I lost my mom to pancreatic cancer two years ago and it was so difficult to watch her suffer so much so I do know what you are going through. My mom also hated to take prescription pain killers because they made her feel so out of it. My mom's oncologist helped us to arrange hospice for her. My mom died at home under hospice care. Her only wish was to die at home. PLEASE reach out to any and all friends, neighbors, church family etc. You need to take care of yourself or you won't be able to take care of anyone else. Please keep posting, these boards are wonderful for support.

Hello Kris. I'm sorry to hear the news about your mom. My heart goes out to both of you. I, too, am an only child and lost my mother (age 49) to ovarian cancer when I was 19. Now her baby sister (67) just finished rads for tongue cancer.

It is outrageous that they would not inform your mother of her condition and that they would not make the hospice arrangements for you. Personally, I am a believer in knowing the truth, but this may not be the path you choose. Perhaps if she was aware of the graveness of her condition she would be more receptive to the pain meds. Are you going to contact Hospice on your own?

Dodie

I wanted to stop in and thank you for your kind words. Wish I had been able to spend more time here, but as most of you know there is barely enough time on a good day to sit, and on bad days even eating meals is out of the question, and unfortunately not soon after I posted things took a turn for the worse here. Mom was told of her diagnosis on Jun 18th when her breathing had became severely impaired again due to the size of the neck tumor. She was hospitalized that night and an emergency surgery performed saturday the 19th to excise some of the tumor obstructing the airway. She came home on the 22nd with hospice in place. They were to visit us once a week for about an hour - we had a visit on the 24th, and another on July 2nd. They began to talk of perhaps a pain patch since the tumor had eaten to the esophagus making swallowing oral medications (or anything else) almost impossible..she told them she'd consider it. My mother passed away at home on July 7th. The last 3 days were the hardest I've ever had to face. It was 100 degrees here, she was semi conscious, very agitated and I couldn't even get her to sip water without causing her to choke. Pain meds had the same result. I won't go into the other details, it's not fair to the rest of the care givers out there, but those of you who have been thru it understand the exhaustion and frustration that kick in those last few days... I wouldn't wish this on anyone.
I will offer this advice - TAKE CARE OF YOURSELVES too! Make sure you have support system around you, take breaks, ask for help if needed (even if it's just here venting). I learned the hard way.
Thank you all again -
Kris

cancer is such an awful awful thing. im so sorry you had to lose your mom in this way.
i really dont know what to say..ive been scared im going to lose my mom in the same manner. i just wanted to say im deeply sorry for your loss and hope you have lots of support and love around you

I'm so sorry about your mom. I lost my husband to this disease and witnessed the horror first hand also. Be comforted knowing she is at peace and her pain is over.