New member, father diagnosed with NSCLC Stage IV, 3/03g

[Guest gwamakawen]

Hi all,

I'm glad to have found this forum in order to say the things that have been going thru my head for a long time, and afraid to say them to anyone close. I may spill it all in this one message and never come back, but it might make me feel better. I've been reading some of the other messages, so this isn't so far off the wall.

When my Dad was diagnosed in March, I lost my high-salary, executive level job the same week. It was not a amicable separation and there's still a lot of bad feeling over that! The day after I lost my job, I got on a plane and went to FL where Dad is. I spent three weeks with him at that time. He was making decisions about what sort of treatment, if any, he was going to take. He was scared and so was I. I have two siblings who both live in FL, a brother who is in the same town as Dad, and a sister who lives in Miami. Neither of them has a very good relationship with Dad...I'm the eldest of 4 surviving kids. Dad decided to undergo the tx his oncologist recommended...which was six weeks of radiation and chemo...radiation 5xweek, plus chemo once a week for 6 weeks. The oncologist (who used to be his internist, switched specialties), didn't really tell him what to expect, didn't involve any "team" approach to Dads tx. Just set him up to come to the clinic every Tues. morning for chemo, and told him to go to the hospital to set up his radiation tx.

This Dr. knows that Dad lives alone, but never in all this time has he asked how he's getting on at home, never bothered to inquire about his nutrition, never asked about his pain levels, forgets all about his other medical issues...only seems to be interested in filling him with poison and sending him home. His first round of tx went fairly well, except that the radiation burned his esophagus so badly he could hardly eat anything. He was told, by the rad. onc. to start drinking Boost, and gave him a script to drink while he was trying to eat...to numb his food pipe. Of course, he couldn't taste anything, so he hardly ate. Lost weight. Got weak, wbc counts went down (?) and was hospitalized for 3 days to bring that back up. (Does that make sense?) Dad was determined to get through all of it in the hopes that it was doing some good.

After that first round, he, too, had to wait for about amonth before getting his scans done. He was told that they waited in order to get the radiation out of his system, in order to get clearer films.

When the results came back, they did show some progress, it appeared that some nodules were smaller, and there was less activity. The onc. said he should give it four more tx., w/o the radiation this time. Dad thought that would be better, cause the rad. caused so much pain the last time around. The Dr. never told him that this course was going to be more concentrated (Taxol/Cisplation), but it was, over 12 weeks time. This time he started developing peripheral neuropathy in his feet, legs and fingers.

Still, the onc. never talked to him about the rest of his body/health/life. While I was there, we managed to see his pulmonologist, and his cardiologist..no, his pulmonologist didn't even know he was being treated for LC and they're in the same clinic! We talked to the pulm. about the neuropathy. We got him to prescribe O2 for home use, he reassured ME that as long as Dad continued to see HIM, that he would make sure that Dad was getting all the ancillary care that he should.

I've tried to talk to Dad about his onc. - but he refuses to listen to anything about finding someone else. I feel that part of his denial to look at other possibilities is because he is by himself, and is afraid of trying to get around by himself. He's very proud, and will NOT ask for help from anyone. There are times when he should not be driving, but will NOT ask someone else to do that for him. There are services in his county to pickup/deliver him for appointments, but NO.

In the meantime, I'm debating about finding a job or NOT.. I've been back to FL three times this summer, and every time, I see how much worse he is. He is forgetting things, he makes "decisions" about taking his meds differently than ordered, and then complains because "nothing works". He gets grumpy when he doesn't feel good, which I understand, but sometimes it seems like he saves all the bad things to tell me.

I know he depends on me, and I know that I'm really the only one he trusts enough to take care of him, but GEEEEZ...this does get hard for the people who live those who are sick. My hubby and I are now in the process of packing our house and moving back to FL in order to be nearer to Dad. I never really aggressively looked for a job here, because I felt eventually Dad was going to get sicker and I would need to be there. (Is that too fatalistic on my part?)

I don't know what my point is in all of this...I guess I just needed to vent. I think his Dr. sucks, too! , and I want my Dad to feel better and I want him to listen to me when I tell him something that is only for his own good, and I want him to remember when we have conversations, and I want him to not be so argumentative with me ('cause he is lately), and I want him to accept offers of help from friends and other relatives and not be so damn stubborn. And I want him to get over whatever his issues are with my brother (and that goes both ways, too), and I want him to feel better, and I don't want him to get sicker and die from this horrible disease....is that asking too much?

[Don Wood]

First of all, I agree with you that your dad needs a new onc. But he also needs an advocate and that seems to fall on you. I am glad you are planning to move near him because, if he is living alone, he needs someone near to watch out for him -- appointments, questions, medications, etc. I am my wife's advocate, nurse, pharmacists, etc. The patient with LC is often too sick, too tired, too doped up to fight the battles that need to be fought to get him the best care. I hope you will be able to do this for him. I am glad you expressed your frustrations here -- you need to do that for yourself. Please continue -- there are much support and much info here. One of the hardest jobs in the world is the caregiver to a cancer patient, but it is sorely needed. Hope you will stay in touch here, and I wish you well in helping your dad. Don

[karen335]

Gwamakawen,

I too had the same treatment that your father has had. I am a stage III, and the treatments worked for me. Tumor shrunk. I put my treatments in the hand of the Lord. I had another broncoscopy on 10-16 and my docs could not find tumor and biopsy came back negative. oh, by the way the tumor was originally 17cm. My suggestion is, make sure your dad is eating and keeping his strength up. Has he had a PET scan to make sure cancer has not spread. If he is not in pain, don't take pain meds. Makes one delusional and out of control of self being. If I have pain I take tylonol for arithiritis. (Leg pains from procrit & chemo) I hope this helps you. I will be praying for you, your dad and brother. It is good that you are moving closer to your dad, he needs you there as a caregiver and to oversee that the docs are treating him correctly.

I agree with Don, find another doctor that will give you some answers...

God Bless and Warm and Gentle Hugs

Karen

P.S. Please keep us posted. We do care and want to help as much as we can.

[mhutch1366]

Dear G,

Bless you for taking on the job of looking after your dad when he needs you most and is least likely to admit it. You may find the oncologist will sit up and pay attention now that your dad has a vocal strong advocate. Write everything down in a notebook, and be aggressive about asking questions of the oncologist. dates, procedures, meds, questions, answers, services available in the community, etc. -- write it down.

I am glad the pulmonist seems to be reasonable to deal with.

Please come here frequently for support, to ask questions, to find some answers, and just to vent and share.

We care. We've been there/are there.

Good luck to your dad.

And God bless and keep your family.

MaryAnn

[lilyjohn]

I had to read your message twice to make sure your dad does not live in Washington. His doctor was about the same as you describe your dad's to be. Even had a pulmonologist in the same building. Unfortuanately Johnny never saw him.

I give the same information as everyone else keep records!! I also advise that you get copies of all test results. Remember if they know that you are watching and recording everything they will be less likely to do something not to his advantage. I hate saying that but I have learned the hard way that not all doctors are there to help the patient. There are many who care little for a live or how much they cause a person to suffer either physically or emotionaly and sometimes both.

Stay close to you dad and watch everything that goes on. If you have to switch doctors. If you find his treatment to be too bad file a complaint. Do it with the evidence that you gather (records you keep) and do it while your dad is able to be a witness. I found out the hard way what you see means little when you file a complaint. They just as soon call you a liar as look at you. I am not talking about the doctors either. I mean the medical board! I have already told them that their sole purpose for being there is not to look out for the patients best interest but to cover the asses of the doctors who screw up! Pardon my language but the truth is the truth.

Act now before it is too late. Life is precious. Fight for it with all of your strength and when you think your strength is gone reach down further inside of yourself and find more. My best wishes and prayers are with you and your dad. Lillian

[DeanCarl]

First off a big DITTO to what the other folks here have said. Keep records, ask questions (and KEEP asking until you are satisfied you understand the answers), etc.

A couple of things to add: Being a loved one of someone who is seriously ill can be VERY difficult. I know. My wife almost died twice in the last couple of years. Now we have reversed rolls. So I've seen this from both sides and have learned a couple of things.

First and foremost ... TAKE CARE OF YOURSELF! That means physicaly, menataly and spititualy. Do whatever you have to do to maintain your own balance. The path you and your father are on is a tough one and the destination is unknown. But it CAN be traveled .. and HAS been traveled. Take heart from those who've gone before you.

If at all possible, take a step back mentaly from all this. Make sure you know what your father wants. Try not to argue with him. If you find yourself in an argument, back off and try again later when he seems more receptive. That way you reduce the stress on both of you. And with this disease there is enough stress to go around without adding to it.

Learn ... learn ... learn!!! Learn all you can about your father's illness. The more you know the better you can advocate for him and the more you can reduce you're own fears. I found a TON of information on the National Cancer Institute web site at http://www.cancer.gov

In the meantime I'll be sending good thoughts your way and hoping for the best possible outcome for your father ... and for you!

Dean

[Guest gwamakawen]

I can't begin to tell you how much your kindness has meant to me. Once I realized that I actually got responses, I went back and read what I'd written...WOW, I did dump a lot!

But, I have tears in my eyes now from reading all your letters of support and encouragement. Only two more weeks til we move down there, and one of the first things I will do is tell him about this site. I've already sent him a couple articles, and he's printing them off to take to his pulm. I don't know if he will be comfortable writing his thoughts and/or feelings "into the internet", but I'm gonna try to get him here. He never wanted to go to any support group meetings, cause he didn't want to sit and listen to people just complain about their health issues (his words). I can tell him that there are many different groups here and he can read until he finds the one he is most comfortable with.

Thanks you again, everyone, for all your good thoughts and prayers.

I will keep in touch,

Karen

[Don Wood]

Lucie and I attend a weekly cancer support group (we don't go every week) and we both have found tremendous support there. I hope your dad will reconsider. I also hope he will come here and see. Don

[Tiny]

Karen-

It sounds as if you have negotiated the first nasty, troublesome corner of this lung cancer journey and now have a plan and are on an upward incline. Make no mistake, there will be plenty of slippery slopes ahead, but your dad will have you there with him to help him navigate them.

It would be great if your father would join us on line, but I also understand his reticence. As someone else mentioned in another post, perhaps you could convince him to just "lurk" for a while and then he could jump in sometime if a topic ever beckoned to him. I also relate to his reluctance to join a real-live support group. There is only one in our town, and it serves all types of cancers. There are no other LC people who attend, and the others can't relate to what goes on with LC. This online group has been a Godsend and a blessing, both in the receiving and the GIVING of support. My best to you and your dad.