Stage IV
Well I may be odd but I am not average!
I feel like my family is suffering more than I am, how do you folks change your negative thoughts into positive ones and help to keep your loved ones spirits up.
Comments
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Stage IV
Sorry to hear that Rayman. I am a 5 year Stage IV living with cancer guy who had to spread to the liver and lungs and lead a fairly normal life. It's devastating at first, but once the dust settles, find yourself a good medical team that you are comfortable with who talks about curing you, not giving you a death time line. yea, many of us w/o treatment probably would not fair well but there is plenty of great treatments out there and Stage IV is not the death sentence it once was.
This is a great board when we stick to cancer and humor. Sometimes it strays but the reality and sanity comes back and we help each other. Attitude is important as well as counseling is. I have benefited by talking to someone about it but there are other ways to deal with it.
Have you had any procedures or chemo done yet?
Hope this helps
-phil
PS: Great shoes!0 -
Treatment
If I understand your post, are you currently receiving treatment or treatments for your cancer and if so, has your Onc Dr mentioned another treatment since it spread to the liver?
I agree with Phil, Stage IV is no longer a death sentence. This will be a hard and difficult fight, but a fight that you can win. Never give up hope, treatments, clinicl trials or doctors. If you are not happy with one, speak with another and another and another until you find a Dr or team YOU feel comfortable with.
Keep your family here posted on your next steps0 -
Hey Rayman, situations like
Hey Rayman, situations like this really put tremendous pressure on relationships. Some don't know how to deal with it and say the wrong things in an attempt to help. Others may disappear completely. I'm not sure if there's much you can do about the reactions of others. I think the best thing to do is concentrate on your own feelings, develop your own positive "I'm going to beat the hell out of this beast" attitude, and prepare yourself for a tough fight. Your family will feed off of that and join you in the fight. As has already been said there are lots of stage IV survivors these days. The statistics that you may hear are always at least 5 years behind so don't take them too seriously. What's true today is totally not like it was 5 years ago. So put on your battledress, take a deep breath, and go for it!
Carl0 -
HELLO IM SORRY TO HERE YOU HAVE PHASE 4 MY WIFE IS JUST GETTING STARTED WITH HERE RECTAL CANCER TREATMENTS WHAT CAN SHE AND I EXPECT FROM THESE
SHE WILL BE GOING ON A PUMP FOR CHEM FOR 5 DAYS THEN OFF TWO WEEKS THEN ON AGAIN FOR A WEEK
THE RAD IS EVERY DAY OR 4 TO 6 WEEKS SHE IS HOPING THIS WILLL DO HER CANCER GOOD AND GET IT TOOKEN CARE OF SHE IS NOT HAPPY WITH LOSING HERE HAIR WHAT CAN SHE DO TO GET THROUGH ALL THIS THANKS0 -
Rayman
I'm sorry to hear your news, I was hoping for better for you. It is going to be ok. I know it won't always seem like it right now - this is the toughest time. Your life has been irrevocably turned upside down. But it gets better, even GREAT if you can believe it. You can't always keep your attitude up. You are human. You'll have good days and bad, but mainly they'll be 'moments'. Here's what I have on my expressions page:
"When I was diagnosed everyone kept telling me it's ok to get angry, scared, sad...well, duh! What no one ever said is that it's ok to have FUN! You are still allowed to smile, laugh, joke. Now I do! I'm the crazy canzer lady sometimes. Who has fun with canzer? Me! I hate canzer. It really sucks. But I refuse to give it so much power that it robs me of joy and happiness. Laughter is life to me. So, FUN it is! "
When I got the news that I was stage IV, I was alone in the car with my then 16 yr old son. I was on the phone and he could clearly hear my end of the conversation. I knew I had a very brief moment to make a life-altering choice for him - how was I going to handle this? So, I was very matter-of-fact with him that my scan wasn't what we had hoped for but we weren't going to let that spoil our day. We cranked the music and opened the sunroof, jamming and singing all the way home. It has set the tone for my entire treatment. My only rule is to have FUN every.single.day. No exceptions.
If you click on member usernames you'll be able to read our expressions pages and blogs. There are some wonder, inspirational stories from this board and others.
Good luck and hugs,
Kimby0 -
Stage IV
Hey Rayman and Jodi's Angel!
Welcome to the board... it's too bad you have a reason to find us, but now that you have, feel free to settle in and make yourself comfy. When you are first diagnosed with cancer, it's a real kick to the gut... when you are then told you are Stage IV, whether rectal or colon cancers, it's a double kick to the gut. But you have found a great place here online to get your bearings and life back into some sort of balance.
It's one thing to talk to doctors and hear all the medical jargon, statistics, treatment plans, etc. because the brain can only absorb so much. After a few minutes of talking with them all you hear is blah, blah, blah, death, blah, blah, blah, not good, blah, blah, blah, 1 year max, blah, blah, blah.
It's the blah, blah's that you miss out on that those of us who have been there, got kicked in the gut and are still here to talk about it can translate for you.
Like the others have said... statistics and averages are just that... numbers and, well, numbers
But they mean nothing to individuals since none of us are a number, statistic or average. The fact we are all still alive and kicking mean we haven't even made it into the statistics yet. Survival rates seem to always be based on who has died, not who has lived.
There are sooooo many things to take into consideration before your "number" is up. Age, health, attitude, and a biggie... treatments! Are you willing to take treatment? Do you have insurance or whatever is needed to continue on with treatments? Are you over 90 and have other health problems? The list goes on and on... because these things can affect the outcome.
When you hear the outdated statistics that research has shown that only 10% survive 5 years once they have been diagnosed as Stage IV, they don't give you all the particulars like, a lot of these folk didn't go to a doctor until too late because they didn't have insurance. A lot of these people were old and didn't survive the 5 years because they were old and weren't going to live that long anyways. A lot of people were offered treatments and for whatever reasons, turned them down because they didn't want to go through them. So, it doesn't matter what the statistics "say"... if you start eliminating these various factors, the numbers who don't make it are considerably less. Sure, there's no doubt some are not going to make it... let's not sugar coat a serious illness... but more people DO make it than the statistics lead you to believe. Unfortunately, doctors don't know the answers and rather than give you hope for something they can't guarantee, they play the safe card and give you the worst news. That way, if they are proved wrong, then this is a good thing and no one is upset... but if they are proved correct, then no one can say they weren't told.
Once you get over the shock of having been diagnosed, then it's time to make sure you are comfortable and feel good about your medical team. They are going to be with you for a long time, so make sure you trust that they are working with you and have your best interests in mind. Tell them up front that you really don't care what the statistics say, you are going to put in the energy to fight this with cure being the goal and if cure is not possible, then putting the cancer in a stable mode so that you are "living with cancer" not "dying from cancer".
Let your family know up front that you are NOT in denial. You know you have cancer and you know you have a heck of a fight ahead of you... with trips back and forth to doctors, to treatments and for surgeries when needed, but that if anyone can beat it, you can. Let your family know that if they want to help in the battle then what you would like from them is to know that they believe you are going to give it your all and even when there are days that you feel yucky, you know that it's all part of the battle and you don't want them worrying. Tell them that if they worry, then you have to stop the battle momentarily while you focus your energies on making sure they are going to be ok and explaining to them that you are still fighting. You'd just as soon not keep stopping the battle to make sure they are ok, but rather, if they can show that they believe in you, then this will give you the ammunition you need to battle on.
Jodi's Angel... same thing for your wife. Let her know you are behind her 100% and that you understand there are going to be days where she just feels the pits... but the next day she may be up and back to her old self. Don't fuss over the wrong things... fuss and pamper her and let her know you are there for her, but don't fuss over how worried you are or in any way make her feel she has to stop her battle to look after your feelings.
We are all in this together... those with cancer and those angels who are our caregivers. To tell you the truth, I don't know who gets the short end of the stick... those with cancer or those who look after someone with cancer. It can suck no matter who you are... on the other hand, there are some fabulous things that come out of it. Talk about waking up and realizing just how wonderful your loved ones and friends are... that in itself is going to keep you going.
And again, not to make light of a serious illness... I think I'm not too far off base when I say our imaginations are our worst enemy. Yes, chemo and radiation has it's ups and downs... some days are just fine, other days, not so good. But our imaginations can take us down dark paths that we really don't need to go down. Just deal with one day at a time. A day of feeling yucky is not nearly as bad as wondering what if all 6 months of treatment are yucky... and then finding out it doesn't work that way. A total waste of imagination... worrying over something that never happened
Huggggggs,
Cheryl0 -
Hi Ray and Jody's Angel!CherylHutch said:Stage IV
Hey Rayman and Jodi's Angel!
Welcome to the board... it's too bad you have a reason to find us, but now that you have, feel free to settle in and make yourself comfy. When you are first diagnosed with cancer, it's a real kick to the gut... when you are then told you are Stage IV, whether rectal or colon cancers, it's a double kick to the gut. But you have found a great place here online to get your bearings and life back into some sort of balance.
It's one thing to talk to doctors and hear all the medical jargon, statistics, treatment plans, etc. because the brain can only absorb so much. After a few minutes of talking with them all you hear is blah, blah, blah, death, blah, blah, blah, not good, blah, blah, blah, 1 year max, blah, blah, blah.
It's the blah, blah's that you miss out on that those of us who have been there, got kicked in the gut and are still here to talk about it can translate for you.
Like the others have said... statistics and averages are just that... numbers and, well, numbers But they mean nothing to individuals since none of us are a number, statistic or average. The fact we are all still alive and kicking mean we haven't even made it into the statistics yet. Survival rates seem to always be based on who has died, not who has lived.
There are sooooo many things to take into consideration before your "number" is up. Age, health, attitude, and a biggie... treatments! Are you willing to take treatment? Do you have insurance or whatever is needed to continue on with treatments? Are you over 90 and have other health problems? The list goes on and on... because these things can affect the outcome.
When you hear the outdated statistics that research has shown that only 10% survive 5 years once they have been diagnosed as Stage IV, they don't give you all the particulars like, a lot of these folk didn't go to a doctor until too late because they didn't have insurance. A lot of these people were old and didn't survive the 5 years because they were old and weren't going to live that long anyways. A lot of people were offered treatments and for whatever reasons, turned them down because they didn't want to go through them. So, it doesn't matter what the statistics "say"... if you start eliminating these various factors, the numbers who don't make it are considerably less. Sure, there's no doubt some are not going to make it... let's not sugar coat a serious illness... but more people DO make it than the statistics lead you to believe. Unfortunately, doctors don't know the answers and rather than give you hope for something they can't guarantee, they play the safe card and give you the worst news. That way, if they are proved wrong, then this is a good thing and no one is upset... but if they are proved correct, then no one can say they weren't told.
Once you get over the shock of having been diagnosed, then it's time to make sure you are comfortable and feel good about your medical team. They are going to be with you for a long time, so make sure you trust that they are working with you and have your best interests in mind. Tell them up front that you really don't care what the statistics say, you are going to put in the energy to fight this with cure being the goal and if cure is not possible, then putting the cancer in a stable mode so that you are "living with cancer" not "dying from cancer".
Let your family know up front that you are NOT in denial. You know you have cancer and you know you have a heck of a fight ahead of you... with trips back and forth to doctors, to treatments and for surgeries when needed, but that if anyone can beat it, you can. Let your family know that if they want to help in the battle then what you would like from them is to know that they believe you are going to give it your all and even when there are days that you feel yucky, you know that it's all part of the battle and you don't want them worrying. Tell them that if they worry, then you have to stop the battle momentarily while you focus your energies on making sure they are going to be ok and explaining to them that you are still fighting. You'd just as soon not keep stopping the battle to make sure they are ok, but rather, if they can show that they believe in you, then this will give you the ammunition you need to battle on.
Jodi's Angel... same thing for your wife. Let her know you are behind her 100% and that you understand there are going to be days where she just feels the pits... but the next day she may be up and back to her old self. Don't fuss over the wrong things... fuss and pamper her and let her know you are there for her, but don't fuss over how worried you are or in any way make her feel she has to stop her battle to look after your feelings.
We are all in this together... those with cancer and those angels who are our caregivers. To tell you the truth, I don't know who gets the short end of the stick... those with cancer or those who look after someone with cancer. It can suck no matter who you are... on the other hand, there are some fabulous things that come out of it. Talk about waking up and realizing just how wonderful your loved ones and friends are... that in itself is going to keep you going.
And again, not to make light of a serious illness... I think I'm not too far off base when I say our imaginations are our worst enemy. Yes, chemo and radiation has it's ups and downs... some days are just fine, other days, not so good. But our imaginations can take us down dark paths that we really don't need to go down. Just deal with one day at a time. A day of feeling yucky is not nearly as bad as wondering what if all 6 months of treatment are yucky... and then finding out it doesn't work that way. A total waste of imagination... worrying over something that never happened
Huggggggs,
Cheryl
Nice to hear from you both! I was newly diagnosed in Jan with Stage 4 colon cancer with a tumor in the liver as well, and my onc never said I had a year to live without treatments, in fact, she refuses to give a sentence or prognosis, as she said she has sent people up for liver surgery, who she thought was never going to be able to have it, she doesn't like doing that, and told me people are just living longer now with treatments. I am on Folfiri with Avastin, and had a colostomy last month, and just saw my onc on Monday, since we stopped chemo until I healed, a month ago, but she said avastin is so good for the diseased livers, and she is going to keep me on it, she has patients who have had liver cancer for years, I find it wrong that a doctor tells you, that you only have a year to live?
My father-in-law has a friend who has been living with liver cancer for 9 years now, so never give up hope that this is it! Doctors don't know, no one does, just remain upbeat with a positive attitude, like I told my onc, "I want to beat this cancers a$$!!!!" amd she then told me, "Now that's what I want to hear!"
There is so much they can do these days with cancer, the technology is amazing, and I met people who have been living with what we have for years, so don't lose hope, and keep the faith!
Hugsss to you!
~Donna0 -
Stage IV
Rayman:
Know you are not alone. I too have stage IV rectal cancer with mets to the liver. I have recently undergone surgery to remove the rectal tumor. Next is more chemo and then liver surgery. There is hope still for a cure and we can do no more than fight the good fight.
Best of luck, my prayers are with you and your family.
Mike0 -
tough news to hear
I'm sorry you've had such tough news, Rayman. I'm sure it must be awfully hard to hear. As far as your family goes, I think once they have had time to adjust to the new status, they'll more able to cope with it. Every day that they see you able to go about your life should help them that much more.
On the other side of it, I always think it's a good idea to cry if you need to. It's cleansing and helps you pick yourself up and move on.
*hugs*
Gail0 -
dealing with stage 4tootsie1 said:tough news to hear
I'm sorry you've had such tough news, Rayman. I'm sure it must be awfully hard to hear. As far as your family goes, I think once they have had time to adjust to the new status, they'll more able to cope with it. Every day that they see you able to go about your life should help them that much more.
On the other side of it, I always think it's a good idea to cry if you need to. It's cleansing and helps you pick yourself up and move on.
*hugs*
Gail
I treat my cancer like I would any daily chore or task. When I need to address it, I do. When I'm not addressing it I don't think about it. If someone brings it up I talk about it like I would talk about any mind numbing task. I go days now without thinking about my cancer. It is a good feeling0 -
Thanks so much for your encouragementsnommintj said:dealing with stage 4
I treat my cancer like I would any daily chore or task. When I need to address it, I do. When I'm not addressing it I don't think about it. If someone brings it up I talk about it like I would talk about any mind numbing task. I go days now without thinking about my cancer. It is a good feeling
Yesterday I was foutunate enough to meet an intervential radioligist.
His first words to me were, the bad news is you have cancer...the good news is I can help! he reasured me that I was a young man and had a lot to live for and a long time to live. If I am willing to fight he said he was there for me.
What a relief, I could see the life come back into my wifes face!
I have read posts here that explained the need for a good doc that was supportive and ready to fight with you, but I never truely understood that untill yesteray.
He is going to treat me with chemo beads to my liver and radio fequency treatment to kill the tumors then a follow up with my onc with chemo.Also he said to stay positve have faith and and think of cancer as a chronic diease and not a death sentance.
We are so ready to get started.( next Thursday is the day!)
Thank you all so much for your encouragement0 -
The way I've come to look at it is...
I just have to try harder than other people to survive. I have to watch what I eat and make sure I eat plenty of healthy natural stuff, my supplements and vitamins everyday. Really, for having a liver met, two abdominal mets and now possible sacral mets (all that are shrinking...Yay!) my quality of life has not really changed much.
I feel more like a warrior now than I ever have in my life, but other than that, things are pretty good.
We're all odd in our own way, but you're right - YOU'RE NOT AVERAGE. We are, each one of us, EXTRAORDINARY. My advice to you is live by example. If your family sees that you're not down and ready to fight like hell, that will tell them volumes about how you plan to fight and win. There are so many here that have lived well beyond they're "expiration" dates. The simple fact is your doctor doesn't really know what will happen so don't take that as gospel truth.
Good luck and never ever ever give up!
Elizabeth0 -
Kimby...lizbiz said:The way I've come to look at it is...
I just have to try harder than other people to survive. I have to watch what I eat and make sure I eat plenty of healthy natural stuff, my supplements and vitamins everyday. Really, for having a liver met, two abdominal mets and now possible sacral mets (all that are shrinking...Yay!) my quality of life has not really changed much.
I feel more like a warrior now than I ever have in my life, but other than that, things are pretty good.
We're all odd in our own way, but you're right - YOU'RE NOT AVERAGE. We are, each one of us, EXTRAORDINARY. My advice to you is live by example. If your family sees that you're not down and ready to fight like hell, that will tell them volumes about how you plan to fight and win. There are so many here that have lived well beyond they're "expiration" dates. The simple fact is your doctor doesn't really know what will happen so don't take that as gospel truth.
Good luck and never ever ever give up!
Elizabeth
I also wanted to add that you ROCK!! You're such an inspiration to me. And I feel (hope you don't mind) that we're mutation sisters - you being K-Ras positive me being B-Raf positive.
I know...I'm weird!
Hugs and prayers,
Elizabeth0 -
Yipppppeeee!!Rayman said:Thanks so much for your encouragement
Yesterday I was foutunate enough to meet an intervential radioligist.
His first words to me were, the bad news is you have cancer...the good news is I can help! he reasured me that I was a young man and had a lot to live for and a long time to live. If I am willing to fight he said he was there for me.
What a relief, I could see the life come back into my wifes face!
I have read posts here that explained the need for a good doc that was supportive and ready to fight with you, but I never truely understood that untill yesteray.
He is going to treat me with chemo beads to my liver and radio fequency treatment to kill the tumors then a follow up with my onc with chemo.Also he said to stay positve have faith and and think of cancer as a chronic diease and not a death sentance.
We are so ready to get started.( next Thursday is the day!)
Thank you all so much for your encouragement
Now THAT'S the kind of posting I like to see!! I have heaps and heaps of empathy for anyone who feels down about this disease and I want to smack anyone's doctors' who say "The prognosis is not good... get your affairs in order". Yes, I REALIZE why the doctors have to do that and part of their job is to make sure their patients realize how serious their illness is ... on the other hand, I wish they'd stop and think just what this "reality" does to a patient's psyche. Give them the bad news, point out the seriousness and then point out that there is a big old fight ahead of them that might take some time, but all energy and attitude must be focused on keeping the monster in control, if not outright killing the beast.
Yayayaya for your interventional radiologist, Rayman!! He probably has no idea just how much he has injected a new fighting attitude in you and your family The interventional radiologist who did my Lung RFA did NOT have the best bedside manner, but gol'darn it, he was brilliant at his job of blasting away one of my lung tumours with the radio frequency waves. RFA for the liver has actually been around longer than it has for the lung (they've only been doing lung RFAs since, I believe it was 2003)... but the technology (to me) is mind-boggling and awesome. I am not exaggerating one little bit when I say the day of my RFA I went to the hospital in the morning, was put under general anesthesia at 10am, was awake by 1pm and ready to walk out of the hospital shortly after that. I did have to wait because they wanted to take a lung xray 4 hours after I had woken up, but once the xray was done, I was given the go ahead to get dressed and leave... with the only warning not to drive myself until the next day because of the anesthesia. There's no doubt in my mind I COULD have driven, but dem is de rulz so I followed them and stayed at a friend's house close to the hospital.
You ARE a young man, with plenty to live for!! So let the living start... as of today!!
Hugggggggs,
Cheryl
"A trying time is no time to quit trying!" - Billy Ray Cyrus0 -
I'm so pleasedRayman said:Thanks so much for your encouragement
Yesterday I was foutunate enough to meet an intervential radioligist.
His first words to me were, the bad news is you have cancer...the good news is I can help! he reasured me that I was a young man and had a lot to live for and a long time to live. If I am willing to fight he said he was there for me.
What a relief, I could see the life come back into my wifes face!
I have read posts here that explained the need for a good doc that was supportive and ready to fight with you, but I never truely understood that untill yesteray.
He is going to treat me with chemo beads to my liver and radio fequency treatment to kill the tumors then a follow up with my onc with chemo.Also he said to stay positve have faith and and think of cancer as a chronic diease and not a death sentance.
We are so ready to get started.( next Thursday is the day!)
Thank you all so much for your encouragement
Rayman,
I'm so pleased to hear that you got "one of the good ones" with your doctor! He sounds very encouraging and upbeat. As you've discovered, this can make all the difference in the world in how well we feel ready to conquer and fight this beast. It also makes such a difference in the hope our family members can have or not. Sadly, there have been several people who have posted that their experience with doctors has not been such as yours has been.
I wish doctors had more accountability for their demeanor and bedside manner with their patients. Don't they realize that their attitude majorly directly affects their patients' attitudes?!
Well, again, I'm glad you ended up with one of the good ones! Best wishes to you as you begin your treatments!
Blessings,
Lisa0 -
Mutation Sisters!lizbiz said:Kimby...
I also wanted to add that you ROCK!! You're such an inspiration to me. And I feel (hope you don't mind) that we're mutation sisters - you being K-Ras positive me being B-Raf positive.
I know...I'm weird!
Hugs and prayers,
Elizabeth
Elizabeth,
I LOVE IT! Mutations sisters....I'm honored! I'm in very good company.
Hugs,
Kimby0 -
chronic disease model
I really embrace the chronic disease model. I was diagnosed 6+ years ago with Stage II rectal cancer. I have three recurrences (to the lung). But, I'm alive! I'm currently NED. And I'm planning to outrun this thing.
Positive attitude is important to me. But so is sometimes allowing myself and my family members to be sad and frightened. My husband and kids have taken their cues from me -- I try to be open and positive, and they do too.
Advances are happening so fast in cancer treatment and management -- both in traditional 'Western" medicine and in alternative/complementary approaches.
Good luck to you.
Tara0 -
my experienceJODISANGEL said:HELLO IM SORRY TO HERE YOU HAVE PHASE 4 MY WIFE IS JUST GETTING STARTED WITH HERE RECTAL CANCER TREATMENTS WHAT CAN SHE AND I EXPECT FROM THESE
SHE WILL BE GOING ON A PUMP FOR CHEM FOR 5 DAYS THEN OFF TWO WEEKS THEN ON AGAIN FOR A WEEK
THE RAD IS EVERY DAY OR 4 TO 6 WEEKS SHE IS HOPING THIS WILLL DO HER CANCER GOOD AND GET IT TOOKEN CARE OF SHE IS NOT HAPPY WITH LOSING HERE HAIR WHAT CAN SHE DO TO GET THROUGH ALL THIS THANKS
I am sorry to hear about your wife.
In my experience with chemo and radiation, I never lost my hair. I had some hair-thinning, but not noticeable to most people (except my hairdresser and me!).
What can she expect? In my experience: tiredness, maybe nauseas from the chemo, maybe diarrhea from the radiation (which can be very uncomfortable if she gets some 'burning' from the radiation around her bottom -- do ask the nurses/radiologist/doctors for advice on creams etc for this).
And, in general, she should feel free to ask her medical team about ANYTHING -- and let them know if her side effects are really a problem.
Good luck to her and to you and feel free to ask questions anytime.
Best wishes
Tara0
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