how to survive the mental game

mccry423
mccry423 Member Posts: 2
edited March 2014 in Skin Cancer #1
Hi there. My name is Brian and I have stageIV metastatic mealnoma. Looking for friends in the same boat. Dont feel bad, but the mind game is totally draining. I wanna quit my job and run away,...not from the experience of living, but from the toxic medicines and death. I have the hardest time turning my body over to the gross side effects of the next recurrence when I feel so well. What would happen if I just ignored it? I have had 4 surgeries already, a year of interferon, and chemical changes in my brain due to all the mood medication I was on. The junk brought out latent bi-polar issues in me or something. I am sooooo grateful to find this group and see that some of us have lived,..I was feeling alone and all I could hear was the bomb ticking in my head,...waiting for that lethal spread. What do you you guys do OTHER than take medicine to fight this?

Comments

  • MaryanSteve
    MaryanSteve Member Posts: 3
    #2
    Brian, I'm Maryan caregiver for my husband who was just diagnosed with Metastatic Malignant Melanoma to his Liver.
    At first my husband seemed numb to it all, but recently I've encouraged him to release his emotions. We have the right to feel mad, sad and scared all at the same time - sometimes we cry and sometimes we get mad. You sound like you are having normal feelings.
    We are just starting our battle with this cancer and we are very scared. The Chemo is horrible and then they talk about Interfuron 2. So, correct me if I'm wrong, first they destroy your immune system with Chemo then use the immune system to battle the cancer - It just doesn't make sense.
    Reading your message gave me insight to how Steve is and will be feeling. My best guess is to discuss these feelings with those around you because my guess is they are feeling some of the same things.
    We both work in heavy highway construction so I work mostly with men and I know sharing feelings and feeling weak doesn't come easily, but try.
    Maryan
  • vettelover
    vettelover Member Posts: 7
    #3
    Hi Brian. My name is Bruce and I have lived with recurrent melanoma for 4 years this month. This message is to you and to others who either have melanoma or are care-givers to those of us that do have the disease (including Maryan and Steve who responded to your original message). No question that the mental issues we face daily are difficult. There are many times that I wonder why I was chosen to live with this disease. Since October 2000 I have had 8 melanomas removed, the most recent surgeries on Sept. 3rd and Sept. 30th. So far they are recurring only on my back, but like you I feel this time bomb ticking when I expect melanoma to invade a vital organ. I completed 8 months of Interferon Alfa-2b when my cancer returned. It is the most toxic medication I have ever taken (I'm 59), but I was determined to see it through. That is no longer an option, so I am now 2 weeks into a 4 week radiation treatment program which I hope will show positive results and prevent further recurrences.

    I have tried and continue to try to focus on helping other people, looking outward rather than inward. I help my son who is 31 and diagnosed with Multiple Sclerosis, now on disability. I help my wife who suffers from Crohn's Disease. And finally I help my next door neighbor and her two young daughters who lost their father on Flight 11 out of Boston on September 11, 2001. So you see there are many people who need your help too, I am sure, if you look around you. Maybe its a family member or a neighbor that needs a helping hand or just someone to talk to.

    Don't quit your job. Find one or two people at work that you can confide in and tell them about your disease. You will be amazed how people will take an interest in you and see that you're spirits are raised when you have a down day.

    Two other suggestions...learn all you can about melanoma. The internet is rich with information on web sites where you can read about the latest clinical trials available in your area, for instance. If you or others need pointers where to go, send me an email and I'll send you a list of web sites for starters (bruced@adelphia.net). Second, if you feel you are not getting the care and results from your Oncologist, get a second opinion. I did and it helped me in my decision process to start radiation treatments to be followed by a clinical trial using the drug GM-CSF. I am not excited about going on another drug so soon after the last one failed, but my research showed that some success can be achieved in about 15-20% of people that take the new drugs. Only time will tell.

    Lastly, if you don't have a pet, find one soon. My wife and I rise early every morning and take our 2 Cocker Spaniels for a walk along the pond here in southern NH where the autumn foliage is just spectacular. Then you will see that you have everything to live for and to fight for. Good luck and keep smiling :)

    Bruce
  • Squeaker
    Squeaker Member Posts: 3
    #4
    Brian,
    I too have stage IV melanoma and I seem to be struggling with the same issues you are. I don't know if I have any answers, but I do know that sometimes it just helps to have someone to talk to that has been in the same place you are. I don't really "feel" sick either (yet) but the PET scans and such just tell me I am. I have known since August that I have melanoma and have gone through 1 round of IL-2 treatment. When I was going through that I kept thinking of ways to run away from these treatments that made me feel so bad. I was expecting to start them again this week and I kept telling my husband to take me to Mexico where they couldn't find me. After saying all that, I felt really guilty when the scans came back last week saying the treatment wasn't working and the doctor recommended I not do IL-2 anymore. Now I am more scared of my mortality than I am of those terrible drugs. I feel too young for this (I am 22).
    I totally agree with Bruce that you should learn all you can. Seeing some of the hard facts is really difficult, but it may also give you a sense of control over the choices you make. I am having a hard time with the mental side of this, but (if you are a man of faith) I can say praying hard when the depression hits has helped me a lot.
  • RHONDA71355
    RHONDA71355 Member Posts: 2
    #5
    vettelover said:

    Hi Brian. My name is Bruce and I have lived with recurrent melanoma for 4 years this month. This message is to you and to others who either have melanoma or are care-givers to those of us that do have the disease (including Maryan and Steve who responded to your original message). No question that the mental issues we face daily are difficult. There are many times that I wonder why I was chosen to live with this disease. Since October 2000 I have had 8 melanomas removed, the most recent surgeries on Sept. 3rd and Sept. 30th. So far they are recurring only on my back, but like you I feel this time bomb ticking when I expect melanoma to invade a vital organ. I completed 8 months of Interferon Alfa-2b when my cancer returned. It is the most toxic medication I have ever taken (I'm 59), but I was determined to see it through. That is no longer an option, so I am now 2 weeks into a 4 week radiation treatment program which I hope will show positive results and prevent further recurrences.

    I have tried and continue to try to focus on helping other people, looking outward rather than inward. I help my son who is 31 and diagnosed with Multiple Sclerosis, now on disability. I help my wife who suffers from Crohn's Disease. And finally I help my next door neighbor and her two young daughters who lost their father on Flight 11 out of Boston on September 11, 2001. So you see there are many people who need your help too, I am sure, if you look around you. Maybe its a family member or a neighbor that needs a helping hand or just someone to talk to.

    Don't quit your job. Find one or two people at work that you can confide in and tell them about your disease. You will be amazed how people will take an interest in you and see that you're spirits are raised when you have a down day.

    Two other suggestions...learn all you can about melanoma. The internet is rich with information on web sites where you can read about the latest clinical trials available in your area, for instance. If you or others need pointers where to go, send me an email and I'll send you a list of web sites for starters (bruced@adelphia.net). Second, if you feel you are not getting the care and results from your Oncologist, get a second opinion. I did and it helped me in my decision process to start radiation treatments to be followed by a clinical trial using the drug GM-CSF. I am not excited about going on another drug so soon after the last one failed, but my research showed that some success can be achieved in about 15-20% of people that take the new drugs. Only time will tell.

    Lastly, if you don't have a pet, find one soon. My wife and I rise early every morning and take our 2 Cocker Spaniels for a walk along the pond here in southern NH where the autumn foliage is just spectacular. Then you will see that you have everything to live for and to fight for. Good luck and keep smiling :)

    Bruce

    HI MR. BRUCE,
    MY NAME IS RHONDA.THIS IS MY 1ST TIME ON THIS BOARD.MY 39 YEAR OLD BROTHER RANDY HAS MEALNOMA STAGE 4 AND BONE CANCER.NOV 22 04 HE WAS DIAGNOSED. I HAD TO TELL MY PARENTS.
    MY BROTHER WAS DOING FINE THEN HE STARTED RADATION. NOW HE'S SICK ALL THE TIME CAN'T KEEP ANYTHING IN HIS STOMACH.IS THIS NORMAL??
    THE CANER IS ALL OVER HIS BODY BUT THE KIDNEYS AND BRAIN.
    WHAT IS THE DIFFERENCE BETWEEN CHEMO AND RADATION?THE DR. IS ALSO GIVING HIM A STERIOD SHOT??
    I'M GLAD I CAME TO THIS SITE.IT'S SUCH AN EMOTIONAL TIME FOR OUR FAMILY RIGHT NOW.
    JUST WANTING SOMEONE TO TALK TO.
    HAVE A BLESSED DAY,RHONDA
  • Zombiezen
    Zombiezen Member Posts: 1
    #6
    I can really realte to all of this as i was just diagnosed with metastatic melenoma in my bones and lung. I am very afraid and they want to start me on a treatment of chemo and then interferon, inteluekin, and GM-csf all at the same time. Im afraid my body wont be able to handle all this. can anyone let me know how they did or any suggestions?
  • vettelover
    vettelover Member Posts: 7
    #7
    Zombiezen said:

    I can really realte to all of this as i was just diagnosed with metastatic melenoma in my bones and lung. I am very afraid and they want to start me on a treatment of chemo and then interferon, inteluekin, and GM-csf all at the same time. Im afraid my body wont be able to handle all this. can anyone let me know how they did or any suggestions?

    Zombiezen, sorry to hear of your diagnosis with melanoma. I would be happy to exchange emails with you and discuss my experience with Interferon and GM-CSF. My email address is bruced@adelphia.net. Bruce.
  • Unknown
    Unknown
    #8
    This comment has been removed by the Moderator
  • yalleh
    yalleh Member Posts: 36
    #9
    Zombiezen said:

    I can really realte to all of this as i was just diagnosed with metastatic melenoma in my bones and lung. I am very afraid and they want to start me on a treatment of chemo and then interferon, inteluekin, and GM-csf all at the same time. Im afraid my body wont be able to handle all this. can anyone let me know how they did or any suggestions?

    old reply
    I did something similar. They kept me pretty doped up so I was fine. I had to be careful between treatments though (couldnt go to work.. eventually had to go on short term disability). I realize this is an old email just hoping Zomiezen is still out there and will reply!!!
  • yalleh
    yalleh Member Posts: 36
    #10
    similar
    Sounds all to similar to my case!!!

    Again this is an old thread but hopefully this helps!

    What I do is wake up in the morning and when the sun comes I realize that I just got one more in. Then I take my dog for a walk and I do agree that pets are great... she taught me that whatever happened in the past happened in the past theres nothing I can do about it, so I just live in the moment.... like I said I enjoy the sunrises and sunsets. I enjoy talking to friends ad family and I dont let things get to me

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