Pegi Posted July 22, 2017 Posted July 22, 2017 This hit Lee like an atom bomb! Stage IV lung cancer metastasized into liver on June 12th 2017. They gave him 6 weeks w/o treatment. They tell you there is no cure. Only hope to shrink and kill cells. Get all your ducks in a row. They are not pulling any punches. This started with a round of bronchitis, weight loss and weakness. I am in the learning process. This is a hard process to watch and be able to absorb. This was not in our game plan. Round 2 of Chemo under our belt. Thank God the side effects for him have been minimal compared to other people. They push exercise and eating and hydration. What do they do when the weakness takes over and even a shower wipes him out for the entire day? How do you handle watching him crawl up stairs to go to bed @ night? I know he feels like he has to be tough guy. Trip to DR yesterday scared the hell out of me. He needs a walker because walking is becoming hazardous to his health. I feel like I am forcing food on him constantly. I told him just tell me shut up and go lay down if it becomes too much. As caregivers how do you react to all of this? At first I was a raving lunatic with some family members. They are not comprehending how serious this is. His own brother showed up @ door with a concoction of hydrogen peroxide & water. Told his brother it was a cure all. I told him NO not in my house. Made the mistake of leaving them alone. His brother fixed him a drink. I was so mad I was shaking. Needless to say he has not been back. There is no offer to help just have to visit constantly and be forced out the door for staying to long. It just gets OLD! It just seems like it is a fight to get the care needed or help along the way. Any suggestions/ Quote
Tom Galli Posted July 22, 2017 Posted July 22, 2017 Pegi, Welcome here! I was the patient while my wife was the caretaker. So I watched her deal with everything you are taking on and now realize that her's was a vastly more difficult challenge. But, I understand I could not have gone through all my treatments without her care and intervention. Energy level during treatment will continue to be a challenge. Martha did find a way of forcing food that was mutually agreeable -- her concoction of chocolate mint Oreo cookie ice cream. She made a batch almost every other day during my first, third and fourth line treatment. It was about the only thing I wanted to eat and given my distain for almost every other kind of food, it was needed nutrition. Funny, I don't relish chocolate mint ice cream now but chemo does something to one's taste buds. So try store bought ice cream (some of the unusual flavor pairings) and if he likes them, tailor make the flavor combination he likes. Well intended family and close friends were most helpful but there was a small population that was too helpful. I was bombarded with internet "sure cure" remedies that gave me false hope and took up my medical oncologist's precious time explaining their questionable value. Almost always a part of this explanation was a simple statement -- if this cure is so effective, why hasn't it been formally tested? So I was gyrating between hope and depression in addition to the burden of treatment. We started researching these ideas on the internet together before investing in their effectiveness. I still do that today on this forum for someone often attempts to sell a "miracle cure". I even wrote a blog about it the effectiveness of miracle cures here. Your husband is involved in serious treatment and your role is invaluable. Suggestions? Remember, this is a marathon, not a sprint and you'll need some "me time". Take that time. Also remember that treatment often extends life and take the time to enjoy the extension. Do something you enjoy together. We found we enjoyed cruising and took a best week cruise during each of my three chemotherapy cycles. My oncologist wrote a note to the ships physician and I carried on a drug store's worth of medication. Moreover, I purchased a comprehensive travel insurance package that covered not only medical care on the ship but emergence evacuation back to the states. But a cruse ship was a perfect vacation venue for us during treatment. We still cruise at least once a year. But find something you enjoy and do it together. We understand what you and your husband are going through -- completely. You'll have questions and don't hesitate to ask. Stay the course. Tom LaurenH 1 Quote
LaurenH Posted July 28, 2017 Posted July 28, 2017 Hi, Pegi, Welcome to LCSC. You'll find many other caregivers in this community, as well as survivors like Tom, who can share the patient's perspective. This is a great place to make connections and ask questions of others navigating a similar diagnosis. If you would like to learn more about LUNGevity's resources and programs for caregivers, I'm happy to share more information with you. If you're on Twitter, we host a monthly chat for caregivers. Our next chat is coming up next Wednesday, August 2, at 8PM EDT. Topics change from month to month. Next week, we'll be discussing legal issues for caregivers. Our host Danielle, is a LUNGevity volunteer, and caregiver to her parents (one has lc, one has a chronic health issue). She is extremely knowledgeable and is an active voice in our community, especially on social media. We are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Quote
vinnpal Posted July 28, 2017 Posted July 28, 2017 Lauren, I've been trying to find a way to introduce myself and join some of the discussions, but unable....I sign in and there's no where to type anything....could you help Quote
vinnpal Posted July 28, 2017 Posted July 28, 2017 1 minute ago, vinnpal said: Lauren, I've been trying to find a way to introduce myself and join some of the discussions, but unable....I sign in and there's no where to type anything....could you help I guess I'm in now????? Pegi 1 Quote
Pegi Posted July 28, 2017 Author Posted July 28, 2017 Vinnpal, You are in now. Welcome. Peg LaurenH 1 Quote
vinnpal Posted July 28, 2017 Posted July 28, 2017 I feel like an illiterate, how do I introduce myself Quote
LexieCat Posted July 28, 2017 Posted July 28, 2017 Just click here: http://forums.lungevity.org/index.php?/forum/3-introduce-yourself/ Then click the link on the right (it's orange on my browser) that says "start new topic"--that should do it! Teri LaurenH 1 Quote
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