Unsupportive family and friends!

If it is as successful as they believe it to be, my husband's doctor said they will push it through. Meanwhile, there are many other options.

On Apr 13, 2012 2:56 PM BALampe wrote:

I'm broke from very high deductibles and out of pocket expenses. If something else happens with the ccRCC, I won't be able to afford to do much about it. I checked the price on some of the chemotherapeutics for it, and I saw some that were $20,000/month! Is that true? I know the insurance company can negotiate that down, but even if they cut it in half, I still couldn't afford it. I'm quite frightened at the prospect of finding out my ccRCC has spread, because I simply won't be able to afford to do anything about it. I work at the family business, and if I were to be gone longer than a month, the whole thing would collapse, and I'd no longer have insurance (which costs, just for me $800, and it's group insurance). I'm absolutely scared stiff over it.

Be sure to search the internet should you need medication, to see if the drug manufacturer has a patient assistance program. Quite often the pharmaceutical companies have programs for those who cannot afford the high costs of treatments and you do not have to be at poverty level to qualify... last two years of tax forms to prove income and any inurance if you have it to see if they will pick up the co-pay.

Wow Renee!

I can't say that I'm surprised you got that type of reaction. My father is only 58 and has RCC - And we had some people react the SAME way.. like "It's only Kidney cancer, He's having it removed and he has another Kidney, it's not that serious" .. Umm.. yes it is. RCC is resitant to chemo and radiation, which is why it's RARELY (if ever) given. I explain that to people ALL the time and suddenly when they know it doesn't work against RCC, it becomes more "serious" in their eyes. I feel the need to say it to anyone who asks and not only that.. but my father had his entire left kidney removed and then 3 years later he has mets to his femur bone and both lungs. He never had chemo or radiation to "keep it away". - And even though surgery has taken the tumors out.. It's NOW in his liver. So there is really no 'cure" for this cancer.

Unless you have one of the more common type of cancers or serious sounding like brain, breast, lung.. bone.. then people think it's no biggie. Also, some people don't understand when you say "It's in his liver now" and they go "oh my god, he has liver cancer" .. NO, he has RCC but it spread to his liver".. ugh.

It's terrible that people would not think it's serious! especially people who supposedly love and care about you. How selfish.. You should be given all the support in the world from them, not feel like it's not as 'important'. I can understand how you would distant yourself from them.

I've noticed 2 different people on my facebook page say.. "I'm cancer free" and I will ask what type of cancer they had and they said "oh no, a test came back abnormal but everything is ok" .. It's like WHY say you are cancer free then??? I think some people do say it for the attention.. who the hell wants this kind of attention when it's not even legit? I don't know!

 

sorry to ramble, I hope things are going better for you and you're weeding out the supportive and... not so supportive people in your life.

 

Take care.

Hi all,

I agree how can anyone who has cancer, say they are cancer -free, it is a cross to carry for the rest of their life.... perhaps it is dillusionary, perhaps to draw attention to one's self. I understand tumours reside in everyone's body, it is what triggers them to become malignant.. that is the question no one can answer fully...  as far as supportive friends and family, the cancer patient and caregiver quickly learn who wants to walk with them and who dismisses the seriousness of the disease and chooses to ignore.

You will know who your friends are with having cancer...Keep your chin up, you may have to climb the mountain alone...

 

On Apr 19, 2012 5:41 PM Jinxie wrote:

Wow Renee!

I can't say that I'm surprised you got that type of reaction. My father is only 58 and has RCC - And we had some people react the SAME way.. like "It's only Kidney cancer, He's having it removed and he has another Kidney, it's not that serious" .. Umm.. yes it is. RCC is resitant to chemo and radiation, which is why it's RARELY (if ever) given. I explain that to people ALL the time and suddenly when they know it doesn't work against RCC, it becomes more "serious" in their eyes. I feel the need to say it to anyone who asks and not only that.. but my father had his entire left kidney removed and then 3 years later he has mets to his femur bone and both lungs. He never had chemo or radiation to "keep it away". - And even though surgery has taken the tumors out.. It's NOW in his liver. So there is really no 'cure" for this cancer.

Unless you have one of the more common type of cancers or serious sounding like brain, breast, lung.. bone.. then people think it's no biggie. Also, some people don't understand when you say "It's in his liver now" and they go "oh my god, he has liver cancer" .. NO, he has RCC but it spread to his liver".. ugh.

It's terrible that people would not think it's serious! especially people who supposedly love and care about you. How selfish.. You should be given all the support in the world from them, not feel like it's not as 'important'. I can understand how you would distant yourself from them.

I've noticed 2 different people on my facebook page say.. "I'm cancer free" and I will ask what type of cancer they had and they said "oh no, a test came back abnormal but everything is ok" .. It's like WHY say you are cancer free then??? I think some people do say it for the attention.. who the hell wants this kind of attention when it's not even legit? I don't know!

 

sorry to ramble, I hope things are going better for you and you're weeding out the supportive and... not so supportive people in your life.

 

Take care.

Hi Jinxie,

I am sorry your Dad has had so many RCC problems.

I was diagnosed in 2007 with Stage IV, RCC with mets to the lungs.  I was told it was incurable and inoperative.  I was put on 'Oral Chemo' and a short time later told to get my affairs in order.

I took the chemo for two and a half years, God intervened in my case by the Oncologist I was using being let go from the Cancer Center I was going to.

I got a new Oncologist, had surgery to remove my kidney.

I have been off of all chemo since the month before my surgery; a little over two years now.  I will be going next month for my lab work and scans; I do hope tests will come back clean, as they have done since surgery.

The 'oral chemo' has really been a blessing to people with Renal Cell Cancer!

Best of luck to your Dad!

Prayers and blessings,

B

On Apr 19, 2012 5:41 PM Jinxie wrote:

Wow Renee!

I can't say that I'm surprised you got that type of reaction. My father is only 58 and has RCC - And we had some people react the SAME way.. like "It's only Kidney cancer, He's having it removed and he has another Kidney, it's not that serious" .. Umm.. yes it is. RCC is resitant to chemo and radiation, which is why it's RARELY (if ever) given. I explain that to people ALL the time and suddenly when they know it doesn't work against RCC, it becomes more "serious" in their eyes. I feel the need to say it to anyone who asks and not only that.. but my father had his entire left kidney removed and then 3 years later he has mets to his femur bone and both lungs. He never had chemo or radiation to "keep it away". - And even though surgery has taken the tumors out.. It's NOW in his liver. So there is really no 'cure" for this cancer.

Unless you have one of the more common type of cancers or serious sounding like brain, breast, lung.. bone.. then people think it's no biggie. Also, some people don't understand when you say "It's in his liver now" and they go "oh my god, he has liver cancer" .. NO, he has RCC but it spread to his liver".. ugh.

It's terrible that people would not think it's serious! especially people who supposedly love and care about you. How selfish.. You should be given all the support in the world from them, not feel like it's not as 'important'. I can understand how you would distant yourself from them.

I've noticed 2 different people on my facebook page say.. "I'm cancer free" and I will ask what type of cancer they had and they said "oh no, a test came back abnormal but everything is ok" .. It's like WHY say you are cancer free then??? I think some people do say it for the attention.. who the hell wants this kind of attention when it's not even legit? I don't know!

 

sorry to ramble, I hope things are going better for you and you're weeding out the supportive and... not so supportive people in your life.

 

Take care.

Thank you for your response. You know exactly what I'm talking about.I've distant myself from allot of people just because the way they acted made me realize what kind of people I was surrounding myself with. I do have some supportive people in my life and allot of the support came from people I never expected it from. So I've learned allot from this experience. What stage was your father when he first diagnosed?

 

Renee

On Apr 19, 2012 6:51 PM eternalife wrote:

Hi all,

I agree how can anyone who has cancer, say they are cancer -free, it is a cross to carry for the rest of their life.... perhaps it is dillusionary, perhaps to draw attention to one's self. I understand tumours reside in everyone's body, it is what triggers them to become malignant.. that is the question no one can answer fully...  as far as supportive friends and family, the cancer patient and caregiver quickly learn who wants to walk with them and who dismisses the seriousness of the disease and chooses to ignore.

You will know who your friends are with having cancer...Keep your chin up, you may have to climb the mountain alone...

 

I've learned allot from this experience with cancer.  I know who my true friends are and who my true family members are. I will not let the fakes ever get to me again. I don't need them in my life. I just want true genuine people in my life thats it.

 

Renee

On Apr 20, 2012 12:00 AM rnayriv wrote:

On Apr 19, 2012 6:51 PM eternalife wrote:

Hi all,

I agree how can anyone who has cancer, say they are cancer -free, it is a cross to carry for the rest of their life.... perhaps it is dillusionary, perhaps to draw attention to one's self. I understand tumours reside in everyone's body, it is what triggers them to become malignant.. that is the question no one can answer fully...  as far as supportive friends and family, the cancer patient and caregiver quickly learn who wants to walk with them and who dismisses the seriousness of the disease and chooses to ignore.

You will know who your friends are with having cancer...Keep your chin up, you may have to climb the mountain alone...

 

I've learned allot from this experience with cancer.  I know who my true friends are and who my true family members are. I will not let the fakes ever get to me again. I don't need them in my life. I just want true genuine people in my life thats it.

 

Renee

Reading this site hit the nail on the head with my family and me. I have kidney cancer and had da Vinci robotic surgery appro. A month ago. I did fantastic with this surgery and like the words of being cancer free. It always in your mind is it coming back. I try to be positive and have a fantastic husband. I've had to avoid some of my family members because I have waited on them hand and foot and listened to all there problems. After having cancer I am in disbelief that they wanted to still complain about their problems and ask me to help them do things after having surgery. I'm learning to say NO and trying to take care of #1. ME. I love life and want to live it good.

Hi Maryooo and all those who stand tall ,

You may find this site more supportive than family or friends, the people here have walked the walk and talk the talk... there are some valuable lessons to be learned from others who cannot face the music...

I have a husband with EC and we now know who are our genuine supporters, neighbours, strangers and clergymen... they lend us their ears...we can be who we need to be... family can pretend or are too afraid to deal with this awful disease...

It all makes us stronger... Keep your chin up and keep driving on... we will survive... 

thank you so much for posting this. I am going through the same thing. I was diagnosed last week with carcinoid of the small intestine. It's golf ball size and by all rights should have spread. BUT because it hasn't my family can't understand why I am not ecstatic. I STILL have to go through having part of my small intestine removed, get the surrounding lymph nodes check for spreading and heal from that. They are withdrawing from me and i don't hear from them anymore. I don't know what in the hell to say. I don't want to tell them I'm still scared to death, that my entire world collapsed around me a week ago. They didn't leave my side until I found out it had not metastasized. I, too, have to live with the uncertainly, raising two kids on my own. It's really scary.