• Does anyone's caregiver not want them reading on cancer sites?

    Asked by TonjaRN on Saturday, May 3, 2014

    Does anyone's caregiver not want them reading on cancer sites?

    I was just wondering if this was just my husband or if others caregivers don't like them reading or researching either? I guess when I compare myself, he takes it as me not being positive about my outcomes. Especially when others have bad outcomes from PC.
    I mean I have stage four, spread to my liver....my outcomes not going to be great. I feel like attitude is a big part of fighting cancer though, and sometimes reading about it makes me sad. I know I could die in a car wreck today, though just as easily.
    Sometimes when I think about the surgery I may have ( md says I'm not a candidate at this point) or the various chemo or radiation I could be faced with, it's scary! I'm comfortable on the abaxane and Gemzar and doses I'm on right not. I know I won't be on this forever though....it's been almost six months since I started this therapy. Pet scan did show a decrease however, so do they stay on it until pet scan stops showing decreases in size?
    I'm sorry I'm rambling.
    Tonja

    16 Answers from the Community

    16 answers
    • alivenwell's Avatar
      alivenwell

      I honestly think knowledge is power. You might read about a break through that adds hope to your future.
      Everybody has a little cancer. It's just not detected.
      As long as they are researching new treatments, diets or healthy lifestyles, there is hope.

      about 7 years ago
    • Lsaginar's Avatar
      Lsaginar

      In the beginning my husband did not want to read nor did he want me as his caregiver to read as he to felt that was a negative. However, here we are 10 months later (Pancreatic cancer stage 4 and he has a different aspect from my being knowledgable. As time went on and I began to ask questions as well as talk to the doctor's about alternative therapies, wholistic treatments etc, he became more confident and aware of his situation and allows me to update him on treatments etc. it took time but we are on this journey together 100 percent.

      about 7 years ago
    • Marichela's Avatar
      Marichela

      All depends what material are you reading in sites.If you read about survival statistics, forget about it!! I'm in 2 years now with your same symptoms, 3 surgeries, I got radiation & I'm in my 3rd round of chemo which yesterday I got my last dose before my CT scan to see how it goes.There were times that I faced the worst but I beat it.So don't feel bad for that, just show your good attitude, you're the captain in this war and your batallion must fight with you and see that you fighting the good fight. Kick out the negative stuff. Thank God I have a lot of good soldiers that says that instead support me I support them. So go for it, you can beat this in a good way. Blessings! ! *--(^_^)--*

      about 7 years ago
    • SamTed's Avatar
      SamTed

      I have that problem too. I read all the time about what is happening to people. All is different. My wife thinks I am nuts. I had Whipple surgery, which did not work out since had spread some to liver. I have had three kinds of chemo, now on pills also, Tarceva, which is very expensive.

      Keeping up with statistics of survival is very important, so you have some idea what to expect. But stay in tune with how you fee. I am at 9 months after diagnosis, and getting by fine. I exercise at a health club several times a week, which helps my general condition.

      But knowing the time is important. It helps one to prepare for eventual departure, a luxury which few have. I love life, so I enjoy each day. Keep in touch with your God, and with your friends.

      Sam

      about 7 years ago
    • Lsaginar's Avatar
      Lsaginar

      Everything I read is based on factual data by doctor's etc. lustgarten foundation, cancer center of Americas, pancreatic doctor groups etc. my husband also has two survivors he speaks with that have had his type of cancer and have great insight on some of the side affects and treatments he has had, they are stage 4 survivors one 11 years and another eight years. This is very important to be able to speak to someone who actually knows what he is going through not just saying " I know what your going through"

      about 7 years ago
    • barryboomer's Avatar
      barryboomer

      I also believe Knowledge is Powerful. Also networking and sharing stories is helpful to ME.
      In the Mainstream Cancer Industry Sometimes they fudge their statistics to get better outcomes.
      Everything is not always on the up and up.
      SO.....I like to read every different perspective on cancer and make up my own mind. I DO Find that some people get really ANGRY at me for NOT going mainstream. They think I'm crazy and being really stupid...."what do you know you're not a Doctor". Well the Docs learn from Books AND Big Pharma that is selling the Drugs. It's a mess and they don't always tell you All the Facts. It's hard to put lipstick on a pig and sell it as being pretty BUT Big Pharma is pretty good at it.

      about 7 years ago
    • glam's Avatar
      glam

      In my case I was my husband caregiver and a cancer patient at same time...my husband completed refused to read about his own cancer on internet and I was the one who did all research and found doctors, facilities, treatment etc for him....with regarding to my own cancer he also didn't want me to keep reading on internet or reading books about cancer because he thought I could be poisoned by statistics and unfavorable news......but when he was by himself he used to perform a great research on my case, treatments, successful stories, and used to filter them to me considering what he though would add any value to me.....the reality is that on internet you find everything....if you can understand statistics exactly as they are, only statistics, ...... and if you can separate what is good without being too much affected by negative news, the reality is that internet is a great and powerful tool in your favor.....you can setup google alerts with the key words more meaningful to you, you can learn about healthy foods, meditation, faithful, find sites such as the whatnext, share, learn and teach from your story, give back, learn about physical activities, yoga, and many other powerful allies to help you to go through and to win your battle against cancer.....but remember to separate and to get apart from what may put you down....and what you need and garbage what you don't .....wishing you and your husband all the best...God bless you both and continue blessing all of us

      about 7 years ago
    • Blazin's Avatar
      Blazin

      I have had CLL for about six years I'm an avid reader on my cancer. Some people told me I was reading to much but I feel if I didnt read and research I would have just sat back and let my doc make all the decisions. Ive found new drugs that are being tested that could help me as I have a rsre gene that stoos regular chemo from helping. I read then filter what I think is important then bring it up with my doc. It helps when your doc is always open to your questions and gives you explainations you understand, I have a great doc and he welcomes all my questions because he nows I'm involved. Ive brought up drugs to him before he has to me. So research is good just filter out all things you think are irrelevant to you. It can get overwhelming so find the right sites that will help your cause. All the best.

      about 7 years ago
    • marcinh's Avatar
      marcinh

      As my husband's advocate it was good for me to read, to learn. He was happy to listen if I found information that we could question on our oncologist visits. He didn't have the desire to read or research on his own but I have to agree, knowledge is power but every thing you read on the internet is not fact...you have to glean the wheat from the chaff...

      about 7 years ago
    • barryboomer's Avatar
      barryboomer

      There was a time when we thought that the Earth was the center of the Universe. ALSO thought the world was flat. New Info is important as it helps push us ahead as a Planet. Flat Earth Society People are those that dismiss out of hand any new ideas or truths as fiction. There have always been people like that. Many people thought Columbus was crazy and he was going to sail right off the end of the Earth. We can see things with an Electron Microscope that we never knew was there. We can watch our Killer T Cells Kill and destroy cancer cells. We discovered AMAZING DNA and what's up with that...lol
      SO....new information is important but must be tested. They use to think Blood Letting was going to help sick people....lol
      Common Sense sometimes NEEDS to prevail also because JUST BECAUSE an AD Agency has a Slick AD and Jingle touting the latest Junk Food doesn't make it good for out health.
      Isn't it AMAZING that is a Sophisticated Country like America these creative Companies can put lipstick on a pig to the point of convincing Moms to give their kids a food labeled as JUNK. I looked up JUNK in the dictionary...

      RUBBISH, TRASH, THROW AWAY OR DISCARD

      How is it possible to convince people to eat something like that?
      We need to use our common sense sometimes even if the prevailing point of view says something like that.
      WHAT PART OF JUNK DON'T THEY UNDERSTAND?

      about 7 years ago
    • Lsaginar's Avatar
      Lsaginar

      It is with great sadness and heartfelt feelings that I report that me soul mate, best friend and love of 35 years past yesterday after fighting an 11 month journey with Stage 4 pancreatic cancer. He died peacefully knowing that he and his family, friends and supporters did all that we could to insure that his life had been lived to its fullest.. I wish all of you long and peaceful years and I ask for all both caregivers and sick

      about 7 years ago
    • TonjaRN's Avatar
      TonjaRN

      Lsaginar, I am so very sorry for your loss. I'm glad he died peacefully and I know you will miss him.
      Big hugs,
      Tonja

      about 7 years ago
    • barryboomer's Avatar
      barryboomer

      Lsaginer....SOOOOOOOOOOOO sorry for your loss.
      He is now with our Lord and in Safe Hands.
      Barry

      about 7 years ago
    • SamTed's Avatar
      SamTed

      Lsaginar,

      It sounds to me like you and his other friends and family made it good for him. I am likely headed the same way, not sure how soon, since it has been nine months for me. I feel that I am also being supported and looked after, and that is very reassuring. It is best, I believe, to never give up, but to always keep reality in mind.

      Sam

      about 7 years ago
    • Marichela's Avatar
      Marichela

      SamTed & Lsaginar:

      I know is tough,I'm in 2 years now and three times faced the death. But I'm here,fighting for the lost ones & for the ones like me are fighting the good fight. My prayers for you and don't give up!! Blessings!!

      about 7 years ago
    • Lsaginar's Avatar
      Lsaginar

      Thank you all for your heartfelt wishes.

      about 7 years ago

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