mrhodes

Quitting is the toughest thing for a smoker to do. It took me a good 120 days before I even felt normal. My husband's lung cancer pushed me out of the closet as a smoker and into non-smoking status. Has your husband visited quitnet.com? It's a GREAT website with people who celebrate every single little anniversary with you and who congratulate you constantly for the daily struggle to stay smoke-free. Tell him to check it out. That might help. In the meantime, I hope you find lots of time for yourself so that you can assist and spend time with your loved one with cancer. Melinda

Hi, there. The rash is actually good news. That's indication that the Tarceva may be doing what it should be doing. My husband did not break out in a rash, and the docs were disappointed. So love that look! Melinda

Hi, Mike. I also wanted to express my sympathy. I'm sure your mother was blessed to have you and your wife assisting and caring for her. Melinda

Hi, Kim. Wow. That must have been amazing to hear. I think removal of the port is a literal and symbolic evidence of success in the battle. Congratulations. Melinda

My husband tried to do administer his own medication but definitely cannot at this stage. I think an outside party encouraging assistance is important. He could also "participate" at med time. Still, I think a reminder of how good he feels when the medication is correct is worthwhile. Melinda

This sounds like a great research program. Of course, I'm a big fan of the research programs, having had two very good experiences (one in which my husband had the "new" treatment and one in which he had the standard of care treatment). Best to you as you move into this next phase. I have heard very, very good things about Tarceva and women.

It took me forever to quite, even after my husband's diagnosis and even after wanting to quit for over a decade. I honestly believe this is the hardest fight I've ever experienced -- staying "smober." I joined Quitnet.com and scheduled a vacation with family around whom I have never smoked to get me through the hell and heck weeks (first two). Now I'm at 298 days, almost 300. And each day, especially those stressfull ones, I feel like driving to the convenience store, picking up a pack and having at it. You cannot beat yourself up, and it makes it worse when you play the guilt game with yourself. The time will come when you want to return to your smokefree status. At the Q, we have a board for cancer survivors and family still fighting the non-smoking fight. Maybe you want to join us there?

I never had anxiety at chemo time -- just all the time. I'm a firm believer in accepting the assistance of anti-anxiety medication. I didn't for over a year and feel, in retrospect, that I might have been able to cope much better. Melinda

Also hear to wish you well this morning and hoping for the best results. Melinda

Whenever I see you picture, I know the post will contain wisdom or caring. So many people have mentioned that in this thread, but I wanted you to hear it from someone who does a little more lurking than posting. You are in my thoughts, I thank you for your ability to keep us all positive and I wish the best for you in the upcoming weeks. Please enjoy that wonderful graduation. Melinda

I also wanted to echo everything said already. There are days when I wonder how or why I should get out of bed. The exhaustion is so severe and the strain almost unbearable. It is time for you to heal. Melinda

Hi, there. Just wanted to chime in because the stabbing pains and tingling you mention (as well as neck and back pain) were all "symptoms" I had been experiencing for over a year after my husband's diagnosis. I went to the doctor last February (making sure to let him know I thought I had cancer and was dying), and he did a chest x-ray and an MRI on my back. Nothing wrong. The situation continued, so he finally perscribed an anti-anxiety medication (Xanax). Since then, no back pain, no chest pain and very little numbness/tingling. I feel "normal" to a certain degree. I agree with everyone to ease your mind and be sure to let the doc know how much you have had to deal with. Melinda

Another place you might want to check out is quitnet.com. It's a great support site, and I'm a member of a club there for cancer survivors and their families. I agree with the advice given above as well. Never beat yourself up. It's self-defeating. The guilt alone makes you feel worse. You will make the move when you feel it's time, and since you posted about it, it's close to time. Melinda

Great advice from everyone. If you do experience symptoms, don't hesitate to mention them and evaluate some of the different drug options for assisting with nausea, etc. There are so many that do assist. But I agree with everyone: drink a lot and eat well. Melinda

There is so much wonderful advice and information being offered. So I would just like to add my welcome. Your mother and your family are so fortunate to have one another during this time. I found the journey with cancer has also been a journey of faith, one I am privileged to make. Melinda

I agree with so many of those posting here. It is important to know as much as possible and have your own information at your fingertips. That helps when it comes to ensuring the physicians and nurses and other personnel take you seriously. My husband has had two experiences with chemo -- one that absolutely took him out, the second that he endured very well and felt he could do even more of. Use the medication available to you for symptom control, and don't hesitate to ask for other options. Melinda

More of the best to you from us as well. Melinda

Hello, all. I haven't posted here in quite a long time except to respond periodically. As you know, we have been in hospice for a little while now. All seemed to be the same with a very slow deterioration in energy levels (which weren't good to begin with) and mental abilities (which, again, were quite limited). Two weeks ago Sunday morning about 3 a.m., my husband said something was wrong, and he wanted to go to the hospital (not prohibited by our insurance). His breathing was more difficult, etc., and raspy. I tried to give him as much pain and anti-anxiety meds as I could, but an hour and a half later, he was still as distressed. We all hauled ourselves to the ER where they gave him some IV steroid and let him sit until what I had given him kicked in. Chest x-ray showed lower right lobe of lung had collapsed due to infiltration of the cancer and an enlarged heart. Once he was calm, we came home. He had been sleeping a lot, eating a little and was very disoriented. I told the hospice nurse what disappointed me most is that I had nothing in an arsenal so to speak that would help me calm him down (he was pulling at the oxygen tubing, etc.). The week that followed was filled with a lot of anxiety and watching. There was a LOT of pain, and we took my husband up to almost the maximum possible with the oxycotin/oxycodone. I did end up being able get some faster acting oral anti-anxiety medication, which my local pharmacy insisted my insurance wouldn't cover. Since it was only $100, I told them to fill it anyway, and I'd fight with insurance. The pharmacy must have expected I wouldn't call on it (which I don't understand since I have always called when refused and always found a solution when refused). Turns out, the pharmacy was contracted with BCBS, but the pharmacist told my insurance representative they weren't making any money on this one. (Not my problem if they need to renegotiate a contract; I say make a not of it for the next round.) So I'm a little ticked off about the business ethics of my local pharmacy. I thought about asking for a spreadsheet of profit they've made thus far from the family. But that's all an aside. Then, wouldn't you know it? All of a sudden he's better than he has been in months. Mentally, he can carry on a conversation. His shuffling and balance have improved, and he wanted to get out of the house. So he's been over to his sister's store to visit, and yesterday we all went to the mall about an hour away, bought him a few long-sleeve shirts and ate lunch out. Then off to his mother's to visit. I'm amazed (and also very much aware that these turns do take place and don't last very long), but the family needed the time to "be normal" for just a little while. We had turned into quite the dysfunctional group and still are, but, again, at least it was a rest. He was even able to watch my daughter play a few games at Chuck-E-Cheese, which was quite a feat. (Normally any dinging and ringing will drive hime nuts.) And he and my daughter didn't spend the whole day bickering with each other (him overcorrecting her; her making note of each injustice quite loudly). So I just felt like posting our update and letting all of you know. Sometimes there are small moments of grace. Melinda

While I don't post here often, I find the people and stories to be just what I need, so I check in almost every day. I know what you mean about what comes from being here. I am so sorry for your loss and wish you much peace and healing. Melinda

I wish you and your family much peace and healing as time passes. The journey is a difficult one, and I only wish there were more than words to offer, but I will put those words into a prayer for you. Melinda

Hi, Gracie. I will be thinking of you, and I just wanted to let you know I'm a couple of hours away in Missouri. Where are you going for treatments? My husband and I spent a lot of time at St. Luke's. They are wonderful, as are many other institutions in the KC area. Melinda

One of the best sources of information I received came from a hospice volunteer manual that I received as part of a story I was doing on hospice care. I'm not sure if those are available to you, but they are so helpful. A friend also gave me a copy of "On Death and Dying," the classic by E. Kubler-Ross. Being in hospice care now, I understand that often people don't say much because they really don't know. I have made it as clear as possible that I want information to feel competent. Maybe that will help with your caregivers?

Our hospice nurse left several numbers. In case of emergency, we're to call the main desk and INSIST on speaking to the hospice nurse on call, she said. She also told us if there isn't a response in five minutes to call back and INSIST again (just in case we get a volunteer who isn't sure about what to do). Everything we've been through so far tells me that hospice is 24/7 with little or no "requirements." I hope you are able to communicate with administration and let them know what's happening. It's unacceptable to experience that kind of discomfort. Melinda

I want to echo the posts about hospice. My husband entered the program in January, and I feel we are receiving the type of care we definitely need. The social worker, nurses, etc., have helped open up some points of communication and, of course, the pain treatment and twice weekly checks on his condition have done much to ease our minds. Melinda

My husband's voice changes periodically from a semi-whisper to a whisper. The better he's feeling generally, the louder the voice. I would reassure him that you are listening and allow him to take his time. (That was a tough one for me. I'd always want to rush him or tell him to speak up, even when I know it's not something he can control.) Writing also seems like a good option. Melinda