Suzie Q

We struggled with the catheter issue, too. My mom just got to be too weak to get to the bathroom, even with help, and I KNOW she never would have gone in a Depends. She ended upbeing so obsessed with the catheter and insistent on getting up to go to the bathroom that I wish we had just removed it. So much of our last conversations were about toileting! However, maybe you can talk to her about the numbness and the fact that she probably won't feel it anyway. If she at least gives it a try, it may work to her advantage, and if not, it can easily be removed. If she still declines the cath, ask hospice to get you some barrier cream to put on her tushie to protect the skin from the wetness. I can't remember the name of the stuff we used for my dad's g-tube skin, but it didn't rub in and was really good stuff. A wound care clinic should be able to get it for you if Hospice cannot. Boy, I feel for you. This part is so difficult and never quite what we expect. Take care of yourself, too. Glad the Xanax is doing its job. ~Karen

Sorry, Kim. That must really hurt. One can only hope this is a good match and that he will find joy and happiness. ~Karen

Consider it done.

Congratulations, Don, and welcome to the world, Avery! Enjoy every minute with her.

Can they send the lymph node slides out for another opinion? We had to send my dad's out to mayo and then to Baylor because the recurrence of melanoma had some characteristics of melanoma and sarcoma, and while it did take a while, it necessary as treatment was different for each, as was prognosis. I can't say I know who is the leading pathologist in lucg cancer. Maybe someone else here can help you.

So sorry to read this news. You have my deepest sympathies.

My mom was not ready to accept Hospice, either. However, she was at a point physically where she had to be in my home, and with a 2 story house with bedrooms upstairs, it made financial sense to get Hospice in and have all the durable medical equipment taken care of by Medicare. But most importantly, WE needed their help. So my siblings and I decided to call hospice for an appointment. The social worker and nurse came to my home knowing she was in denial and they did a wonderful job in their appeal to her. They placed emphasis on how helpful it would be for me, as her primary caregiver, to have them on board. She still didn't like it, despite all of us emphasizing that. So the social worker asked her to give Hospice 2 weeks. If she didn't like having them come in, she could tell them to pack up & leave. (I'm sure they knew how close to the end she really was.) In the end, she consented. She passed away 9 days later, peacefully, and happy to not be in a facility. I know she would have rather been in her own home, but it wasn't possible. We are all so glad they handled things as they did, and convinced her to accept their help. Of course, your mom may not be so easily swayed. But she has to be told that the alternative is a home, because you and her man-friend cannot continue like this. She needs a commode, bed, etc, and all this is coordinated by Hospice. I guess if she totally refuses, you could go with private nurse aide or LPN help to get her bathed and give you relief for part of the day, but that would all be out of pocket expense, and you would have to do the legwork yourself getting all the equipment ordered & delivered. That way she would still get some level of care and you would get assistance, but the "H" word would be out of the conversation, and perhaps she would be less resistant about her status . Maybe even accept that she is at this point and death is nearing. I completely relate to what you are going through. Even with Hospice care, you will still be doing most of the caretaking, but you will have resources available to you, and just a phone call away. Still, it's so hard to do this! Best wishes, ~Karen

Hospice might be able to accept some of those items. Maybe a nursing home??? Meds and anything unsealed (like a box of bulk gauze pads) usually won't be accepted. Health concerns and liability, ya know. The ACS or Gilda's Club would probably be able to take the wigs. They both have programs to help out patients, or at least I think they both do. Mom got her first wig from Gilda's Club for free or a nominal cost. Ask around at your church. Someone may be able to use something you have. Bless your heart, Lori, for thinking of others at his time! ~Karen

Is your dad lying in one position for long periods of time? Are the purple spots on the surface of his body that lies against the bed? If so, these could be the beginnings of bedsores. My dad got this on his scalp at the back of his head, because he was most comfortable with his head in that position. Don't feel he's been neglected. Bedsores can develop despite the best of care. But Hospice should be able to get some Tegaderm patches. These are applied to the skin and protect it from the pressure sores a bit. I don't know where the herbalist gets the idea that bloody stools and vomiting will start soon. Have these been a problem recently? Also, if he is contracted for Hospice care, he probably has agreed not to go to the ER. He should be allowed visitors as he and your mother wish. I'll keep you in my thoughts and prayers. ~Karen

She really should consider at least radiation to relieve the pain of bone mets. Most of the people here have had a great deal of relief from the pain with relatively few side effects. Just keep supporting her and your dad, regardless of their decision. Best wishes, Karen

Doggone it! Hope you find some strength in your reserve tank. Yo've had a rough ride. Keeping you in my thoughts and prayers. ~Karen

I did not have to wrestle with this issue, since my dad passed just 3 months before my mom, but I tend to agree with Beth, that many men do get back to "living again" sooner than women. Some men are just geared to need that female companionship. I am certain that my dad would have dated soon after mom's death, had it worked out that way, but my mom would not have done so. But your feelings are normal. I hope that deep down you can feel good that he has some peace about your mom's life with him and her death, but he is not disrespecting her memory by seeing someone now. People are not replaceable, yet a person can marry again; however, you only get one mom and one dad. so your wounds and grief are very different from his. I expect your relationship with him will change - how could it not? But without your mom there to bind you together, you may evolve toward more of a friendship with your stepfather. I hope that you can maintain some sort of good relationship with him. Just give it time. It is very, very hard to lose your last parent. I feel adrift right now, though I do have siblings and my in-laws to rely on for guidance. But they are not my parents, and are not able to give that special "thing" that only a parent can give. I feel for you. PM me or e-mail me any time. I lost my mom on April 24 of this year. It's still all so fresh and painful, but I can try to help or just commiserate with you! ~Karen

Rochelle, No matter how well-prepared you think you are, you will NEVER be ready to say goodbye. I swear we need our mothers in perpetuity! While you are bracing yourself for the worst, expect and hope for the best. Don't borrow worries, just deal with what's at hand. Your mom is exploring her options with a second opinion. Trust in that, and get a third, or fourth opinion, if necessary! If your mom still has the will to fight, help her get an onc who will do just that. And many blessings to you. You are wise beyond your years, and have a good and giving heart. ~Karen

Melissa, What I would do is continue to ask what you can do to help, even if it is housework, getting the car washed and vacuumed, etc. Let him know that you realize he is fully capable and doing a great job (he needs to hear this!), but you will continue to ask what chores you can take, or if just a visit would be what's needed most. Or maybe you could take your mom out to get her nails done, or to a movie so he can have some time for himself. But he needs to know that you also have a need to assist in some way. Ask if you could go with them to the next appointment for test results. It doesn't matter who drives, but having an extra set of ears is extremely useful, as everyone hears and interprets things differently, and usually soneone will remember a question the patient forgot to ask or discuss an issue that may be forgotten in the appointment time frame. But you do have to respect their privacy. Try not to be hurt if they want to get results, etc privately before they share them with you. It is important to not give up on asking; sooner or later he will need it and may not ask for help. ~Karen

Wow! What a load you've had to bear! Your frustration is understandable. I know at times it seems like the medical providers are twiddling thumbs, but it can be very, very hard to pin down the source of a fever. And in the end, they may rule out everything and chalk it up to a virus or to the tumor itself (tumors can do that, I was told). But they cannot continue treatment if she's weakened by fever and jaundice. Her liver will not be able to tolerate it. My dad had both a fever of unknown origin and jaundice. A cause for either was not found, and both resolved on their own. But it was a frustrating process. Your mom may be clinically depressed. And who wouldn't be? But her seeming inability to fight may have a lot to do with that. Help her focus on how proud of her you are, that she battled addiction and came out on top. She is a warrior! But perhaps an evaluation for depression is in order. Medication (non-addicting) can do wonders. So glad you feel comfortable sharing and venting with us! This group truly understands what you are going through. And please keep us updated on how both of you are doing. ~Karen

Kasey, Any chance your "fun friends" are waiting to take their cue from you regarding talking about cancer? Maybe they believe that you prefer the escapism of the time away without mention of rechecks and apppointments and scans. Or, maybe they are really uncomfortable talking about this stuff, in which case, you gotta find some new friends who ARE ok with it. But it is hard for some people to express what they want to say or to let YOU say, and in the end, no one says anything. I am so happy for you for your 2 years of survivorship! Huge milestone in my book, and I think it calls for Cindy to open the pub! So, What'll you have? ~Karen

Eric, Much sympathy to you and your family.

Oxycontin is a very powerful drug, and it can have some undesireable side effects for the first week or so until the body adjusts to it, but it has to be taken consistently. My mom felt very jittery and got panicked after the first dose, and the pharmacist explained the above to me. She chose to discontinue it. Is there another painkiller he can take? Ask his oncologist, if you can. If your dad continues to refuse to sleep, he may start to hallucinate, and I'm sure he dosen't want that, either. Better for him to be well-rested and keep the pain level down. Don is right...you have to maintain the pain meds consistently to stay on top of the pain, otherwise it'a too hard to control when it reaches a peak. Would it be ok for your dad to talk about death and dying with you, out of his wife's presence? Maybe if he could express his wishes and fears, etc, he would be more at ease. I do wish you well. This is all hard enough, and to deal with it from a distance adds to the difficulty and helplessness. ~Karen

I cannot imagine their grief. I will keep them in my prayers. ~Karen

I am saddened beyond words at Jimben's passing. He had such a level headedness about him, along with a fighting spirit! His story gave me so much hope as my mom went through her cancer treatments, as he tried nine (I think) lines of chemo and was still workin' and fishin'! I will miss him. Heartfelt condolences to his family. ~Karen

Oh, Don, I am so depply sorry for your loss. It has been a long journey, and while she no longer suffers, I hurt for the loss of your other half. I can only offer my condolences to you and your family; I wish it were more. ~Karen

Lori, I am so saddened to read this news. Please accept my deepest sympathies as you journey through this rough, painful time. As a fellow motherless daughter, I know how consuming the emptiness is. may you find comfort in the days ahead. Warmly, Karen

So sorry for your loss.

Any chance the spots are bigger because the cyberknife is causing them to swell as they die off? Praying for things to improve. ~Karen

Don, So sorry Lucy has been so sick. My thoughts and prayers are with you! ~Karen