I just don't know what to do

[tarnold40]

My father became very ill the end of February and on 3/2/04 he was dx with cancer. It took over a month to find out the type and staging because of one thing or another. (Mostly miscommunication). Dad running high fevers (103.6), take to emergency room, hydrate him/send him home, this went on for two weeks. Fever 104.6, got smart called 911. Ambulance takes to hospital, temp 104.6, bp 60/38!! immediate admission to ICU! Go figure. IV's everywhere - dx - cancer - duh!! 4 days in ICU, 3 days in private room, finally trip to Onc. Mr. **** you have nsclc stage 4 and this is what we can do but we cannot cure it! It can make you sick, don't think we want quantity of life, quality is better. Arrange for hospice, that's what dad wanted. Now I'm confused, talks with girlfriend, talks with his sister and now he doesn't even know anything about the cancer!!! I am so frustrated by everyone's view on what is going on and they haven't even talked with the doctors. I have been in constant contact and know what is going on but he doesn't want to listen to what I have to say (I deal with the reality of it) he wants to hear what everyone else thinks - help me to understand this. Now we have an appointment with the Onc. just to talk!!

[Jerrye]

Run, run, run to another oncologist! Get another opinion. What was the fever from? Is he better now? Other than the recent episode, is he in pretty good health? I would have a real problem with my doctor playing God and making a decision for me of quality over quantity. Who is he to say what is quality? Is he refusing to treat your Dad? Sure, the chemo and radiation treatments are rough, but they aren't THAT bad. My main complaint has been fatigue. It gets old, but I would rather be fatigued for the next 10 years and be alive waiting for a cure. I'll put up with a lot to have that chance.

I apologize for my rant. I know your are worried and confused about what to do next. The dr could be correct in his assessment, but you will never know unless you seek another opinion or 2 or 3, if only to put your mind at ease.

You and your father are in my prayers.

Jerrye

[tarnold40]

It's not the doctor - it's the girlfriend, sister that are causing the problem. When he was in the hospital, I refused to let anyone come up there because they were skirting the issues!! The onc. has given us hope but because the sister's husband died from cancer after going throught he radiation/chemo she doesn't think that my dad should put himself through that. No my father is not in the best of health but the onc. said that his hemo count could be down and would need a transfusion. I am already scheduled to give blood as a directive if this be the case. I want to do whatever is possible to keep my father here longer but I want him to be happy and make the choices for himself without all the influences he is getting.

[Jerrye]

I feel better that it is not the onc that is the problem.

I do not have any experience with negativity from family members. I will have to defer to others on this board that have had more experience with this sort of situation. Hopefully they can give you suggestions.

Take care,

Jerrye

[TheresaKB]

Hello,

I am sorry that you have to be here. It might be hard to change the way of thinking of your family but maybe pointing them to this site will help. They will get to meet real people who have survived and continue to survive this disease, who do not consider themselves as statistics but as human beings. Hopefully they will be inspired by the stories here. But ultimately it is still your Dad's decision to have treatment or not. Whatever his decision is let him know that there is a whole community here of all kinds of people who have gone through whatever he might be going through. It might help him to know that he is not alone.

Praying for your Dad.

Theresa

[Don Wood]

Hang in there, because you are on the right track, and your dad needs that. Don

[kimblanchard]

If your Dad has hospice, maybe they could talk with the family members or even give you advice for dealing with the reactions of others. If not hospice, maybe the talk with you, your Dad, and the doctor is the best you can do, at least your Dad will understand.

Our family, nobody has challenged the reality, and they are very hands off, whatever we tell them, whatever we think we should do, they support it. I guess we are lucky that way. If or when things get worse, I hope they will still trust our judgement.

Keep in touch, I'd like to know how you are doing.

[tarnold40]

I had a long talk with my therapist on Friday and I'm going to take her advice. I told my dad about this website and when he has the energy to sit in front of the computer for awhile, he is going to check it out. I do so much appreciate all the kind words and I know that I will be ok with whatever decision my father makes. He and I talked yesterday and we both understand what is going on and accept the outcome, whether it be remission or death. We will be side by side. He has to have another transfusion done and I told him that I was going to give my blood because I want him to fight with everything he has, just as I have always done. We are going to the oncologist on Monday to see if chemo is an option. I really don't think he can handle it because he has gone from 175 to about 110 lbs in just 2 months.

[stand4hope]

I'm sorry that you are having to deal with all of this. It's hard enough to have your dad suffering so much without having to deal with these other issues. Your dad deserves to know the good side and bad side of both choices (fighting it or not fighting it) so he can make an educated decision. I'm also sorry that he is in such a frail state. If chemo is not an option right now, perhaps there are nutrients and other things they can give him to boost him up to be better able to fight, if that's what he chooses do to.

God loves you, and we all love and admire you for your devotion to your father.

God bless you,

Peggy

[Guest KellyB]

I am sorry you have been thrust into this nightmare so suddenly. Your father's condition is serious but not hopeless. Doctors are clinical people and some have more comapssion than others. This is all very new and it is a process of learning, overcoming, hoping, praying and doing your best. Do not ask me how but God does provide strength in many ways. Do not let the negativity of others (family or not) get into this battle.

Be there for your Dad, he has not even been told his options, if you feel uncomfortable with his Onc, get 2nd even 3rd opinions. This website is loaded with info in the archived section as well. The people here are like angels, all support ,all the time. No matter what time of day, I can guarantee someone will be there to reply to you.

Please keep us updated and do not hesitate to call on us, we know what it feels like to think that no-one else really understands.

Take Care...God Bless Kelly

[tarnold40]

Went to the onc. this morning and everything looks good to go for the radiation. In two weeks my father has lost aobut 20 lbs and that's the only thing that concerns me. He was 175 lbs a year ago and is now 126 lbs (I'm a little envious because I have started gaining weight). Had book work drawn and will need a pint so I am going to donate a week before the radiation and will continue to donate as often as they will let me. Right now the doc is unsure of chemo because of his frail state but he wants to live long enough to see his house built on the lake.

His girlfriend stayed with us for a little over a week and I asked her if she would like to go to the doctor this morning and she said no. We got back and she wanted to know what was said and I just kind of scanned over what the doc said. I feel that if she is that interested she would have gone. My father was very hurt by her actions. We took a nap because we had to get up so early and when we woke up she was gone. She called her daughter while we were gone to come get her. She says that she loves my dad but I don't need or want this type of relationship for him right now when he is fighting for some kind of a life.

I am the only one that will make sure my dad has what he needs and gets where he needs to get. No one helps me...I have a very understanding supervisor and that's all that matters.

Sorry for the ranting but I am so fed up with what other people are doing but now I have my house back to my immediate family and the INN Is closed to all others. My dad needs his rest and we don't need the negativity.

Thanks for listening and your words of kindness. It really means a lot.

[Don Wood]

I think your dad needs to lose that "girlfriend". She has sure shown her true colors. Don

[mhutch1366]

It sounds like you have a plan, and things are starting to come under control. Blood is usually only good for 48 hours or so, don't know if you can donate a week ahead -- it would be nice if you could.

The biggest factor in going into the radiation and chemo, I was told when I had mine, was nutritional status. I hope your dad is able to eat, and eat well. Pack the most calories (good calories) per bite that you can. Baked potato? Sour cream and butter and cheese and bacon, if that 's what you like. I remember eating a LOT of steak for lunch. Green vegetables called to me from the produce aisles. Cold milk disappeared pretty quickly too, as did ice cream. None of it diet food... lol.

If your dad can stay strong and optimistic, he may be able to have the chemo, and that may very well enable him to be here a little longer if the chemo works. Doesn't hurt to keep trying. Ultimately, it's your dad's choice. I admire your devotion to your dad.

You are both in my prayers,

XOXOX

MaryAnn

[Carleen]

I too am sorry that you have to be going through this. Added to all the normal stress and anxiety of this diagnosis, you also have to deal with negativity and misinformed but well intentioned family members.

I lost an uncle to LC about 9 years ago, and an aunt 6 years ago. Now my husband is battling this monster. All three were very different and I would NEVER presume to make decisions based off of someone else's experiences. When my uncle and aunt were undergoing treatment, there was virtually no anti nausea drugs available. I remember how sick they were, days and days of vomiting nausea and pain. I was so frightened my Keith would suffer like that, but new medications and kinder treatments have surfaced in just the past couple of years. My husband has undergone many chemo combinations, radiation, and radiation on top of chemo.

The biggest side effect has been fatigue, and that hasn't been too bad until recently. He still works full time and maintains a pretty high quality of life. Following chemo, he has days of nausea, but it is controlled with medication and he is still active; absolutely no vomiting (knock on wood).

There are a few basic things to remember to keep strength up during treatment.

-Always drink plenty of fluids (dehydration can be nasty and very very damaging to the body)

-Eat whatever and as much as possible that your father can tolerate and enjoys. My husband found he tolerates pizza well and ice cream I think we eat pizza 5-8 times a week and go through a half gallon of ice cream a week. (Great for him, but bad for my waist line)

-Get plenty of rest. Listen to your father's body. If it's saying he's tired, rest.

-Make sure to regularly monitor tempurature. While undergoing treatment, immune system is compromised and weakened. It is much easier to fight an infection at the first onset (usually it shows up first as a low grade fever). We were told anything over 100.5 Go to ER immediately and they can nip an infection in the bud. Too many of our friends here have passed not because of the cancer, but because of infection and pneumonia that has gone too far. And if you want to be extra cautious, have your father wear a surgical mask in crowded settings after treatments (they say roughly 10 days following chemo is when the immune system is at it's lowest).

-Finally, and most important, get support! Research info on treatments (this site is great for that) but more necessary is mental and emotional support. You need to stay strong for your father. You father needs to stay positive and you both need to know that there is still HOPE. THERE IS!!! Your father can still beat this, it is a hard battle, but there is no one out there that can say for sure that he will fail - unless he never tries.

Sorry for the long lecturing post, but just know that we are here for you, and we truly care. I will be praying for you and your family.

Carleen

[Remembering Dave]

I think that the girlfriend has got to go. When Dave was first diagnosed the oncologist told us that he HAD to have a positive attitude, a will to live, and a strong support system around him. At the very least, the girlfriend is not a strong support system. She may even drag him down, which is not good.

Also, it sounds like his sister is influencing him negativily with a bad experience from her husband, did I get that correctly? Well, everyone is different, every circumstance is different, and even chemo has improved so much just in the last few years. So everything she knows about it probably isn't even relative.

Your Dad needs to have some time by himself or just with you around, do some reading and research, look over everyone's experiences on this board, and then make his decision.

When Dave was in the hospital and the biopsy confirmed that it was lung cancer, he got very angry, and said he didn't want to see anyone but me for 24 hours (and docs and nurses, of course). He did alot of thinking and put himself in the mind frame to fight.

Hang in there, and be strong for your Dad. and don't let those women push you around.

God Bless,

Karen C. (David C's wife)

[Leslie1961]

I sure understand what you are going through. My mom was diagnosed in September and lost her battle in March. I had trouble getting the Dr. to be totally honest/frank with me, and it was frustrating. Mom and I wanted to know a little more definetly how much time we were really looking at. He would always say 3-6 months.

I was moms caregiver while she was at home. We managed to keep her home up until 3 days before she passed. Of everything I learned from my experience, please make sure you take care of yourself too. You will be of no use to him if you are too tired/weak to care for him. I kept hearing that from everybody, and I kind of shined them on, saying to myself yeah yeah yeah... 10 days after she died, I found myself in the hospital with a concussion and pulmonary hypotension. All because I didn't take care of myself.

You will find that your dad will lose a lot of weight. Try to feed him foods you know he likes, but bear in mind that his stomach capacity is shrinking, so he won't eat like he used to. It broke my heart to give my mom a spoonful of this and a spoonful of that and about three bites of meat. She often didn't even finish that. At the end what she really enjoyed was of all things, orange sherbert! It is disheartening to see them dwindle away, but remember his spirit is still all there. Spend time remembering things together, it is good for you both. Try to get him out of the house as much as possible if you can, a change of scenery never hurts, even if its just a trip to the grocery store.

Hospice can be helpful, and you can remain at home with hospice help. They should have volunteers available to come sit with him for a few hours for you to get away and release some of the stress. I felt guilty about leaving mom so I never took advantage of the service, but looking back, I think I wouldn't have ended up in the hospital myself if I had had a volunteer come in for me.

When the nausea sets in, ask about getting Phenegren Gel.... it comes in a needleless syringe and you rub it into the tummy. It really helped mom with her nausea. Your oncologist or Hospice should be able to help you get some. You keep it in the fridge by the way.

Feel free to private message me if you want to ask any questions or more explanations. Like I said in the beginning I do know what you are going through.

I will pray for you and your dad, and hope that things go the way you want.

Leslie