Hey, very lonely

I was diagnosed with Stage I melanoma when I was 17 and now I'm 22. Since my initial diagnosis 5 years ago, I had a recurrence and had a major surgery in February to remove it from my ankle. During the surgery they found metastasis to one of my lymph nodes putting me at Stage III. After surgery I developed new tumors, one right next to the skin graft and one on my shin. there also some smaller spots. I've been on immunotherapy for 3-4 months now and although my PET scans show that I'm not in Stage IV territory, the immunotherapy doesn't appear to be shrinking my tumors. I feel so sad. I'm having to pay $350 a month to pay for a surgery that didn't cure me. I have to pay for immunotherapy once my deductible is reset for the coming year which is sure to drain me of so much more of my income alongside the $350 towards a debt I won't be able to pay entirely until May 2018. Whenever I talk to people my age about it they never know what to say. How do you cope with full time college, a full time job and cancer treatment simultaneously? How do you deal with financial stress? I'm honestly very on edge a lot of the time. I really want someone I can doing mutual venting with that has similar stressors in their life.

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  • I have stage 4 melanoma, I was first diagnosed at 23 years old as stage 3 but they were able to surgicallly remove it all. A few years later it came back in my lungs and now at 30 I am still alive but have mets spread various places. Currently participating in a trial with nivolumab (opdivo), Nelfinavir, and stereotactic radiation... this is my seventh different treatment to try, some have helped some but ultimately failed. Financially I have been fairly lucky, for many years I had two health insurance policies and just transitioned to Medicare with a supplementary policy. I can't work at the moment but am getting disability pay on top of social security, the place I worked helps with insurance payments and my parents help too. I also have a housemate now to help with rent. With that said I just got a $2000+ bill for a recent brain surgery to remove a met that I am not looking forward to paying! Basically I make too much to qualify for financial aid but not enough to pay my bills.

    Sorry you are having a tough time, there are many new treatments for melanoma being developed I hope they find something that works for you!
  • I have stage 4 melanoma, I was first diagnosed at 23 years old as stage 3 but they were able to surgicallly remove it all. A few years later it came back in my lungs and now at 30 I am still alive but have mets spread various places. Currently participating in a trial with nivolumab (opdivo), Nelfinavir, and stereotactic radiation... this is my seventh different treatment to try, some have helped some but ultimately failed. Financially I have been fairly lucky, for many years I had two health insurance policies and just transitioned to Medicare with a supplementary policy. I can't work at the moment but am getting disability pay on top of social security, the place I worked helps with insurance payments and my parents help too. I also have a housemate now to help with rent. With that said I just got a $2000+ bill for a recent brain surgery to remove a met that I am not looking forward to paying! Basically I make too much to qualify for financial aid but not enough to pay my bills.

    Sorry you are having a tough time, there are many new treatments for melanoma being developed I hope they find something that works for you!
  • I have stage 4 melanoma, I was first diagnosed at 23 years old as stage 3 but they were able to surgicallly remove it all. A few years later it came back in my lungs and now at 30 I am still alive but have mets spread various places. Currently participating in a trial with nivolumab (opdivo), Nelfinavir, and stereotactic radiation... this is my seventh different treatment to try, some have helped some but ultimately failed. Financially I have been fairly lucky, for many years I had two health insurance policies and just transitioned to Medicare with a supplementary policy. I can't work at the moment but am getting disability pay on top of social security, the place I worked helps with insurance payments and my parents help too. I also have a housemate now to help with rent. With that said I just got a $2000+ bill for a recent brain surgery to remove a met that I am not looking forward to paying! Basically I make too much to qualify for financial aid but not enough to pay my bills.

    Sorry you are having a tough time, there are many new treatments for melanoma being developed I hope they find something that works for you!
  • juls4juls4 Community Member
    Hi warreri. I'm in a different place cancer-wise with recent remission of breast cancer, but I struggle daily with coping with everything I lost, feeling like a different person, and figuring out how to move forward while living with so much uncertainty. I would suggest trying to find cancer support groups in your area because people in those groups, regardless of age, will understand the financial burdens you're dealing with and may have great suggestions for how to manage or ways to save money. I would also make sure you've exhausted your financial resources at your hospital/doctor's offices to make sure that if there are any grants, loans, discounts available you get them. It's extra work to deal with the bureaucracy, which in itself is frustrating, but it may ease some of your stress in the longrun if it reduces costs.

    When you mention mutual venting, I think of the times when I vented about breast cancer to people who had never had cancer, but they were able to relate because they or a close friend/family member had dealt with a serious health condition. You may be able to find students your age who are coping with different serious health issues/disabilities, but are having the same financial struggles and frustrations with doctors/procedures. There maybe even be a way to connect with these people through resources at your college.

    Sometimes you have to guide others in how to help you because they want to help, but have no idea how. Instead of venting about how crappy BC is, which most people can't relate to, I say things like "ugh this doctor was such a jerk..have you ever had a doctor like that?" or make jokes and comments about not having money because most people CAN relate to financial challenges, feeling let down by others, feeling hopeless, wanting an escape, etc. I think everyone by age 18 has felt like their world is caving in on them at some point. If I break it down into emotions, I can ask people how they deal with situations that make them sad/angry/hopeless and it doesn't matter if they're talking about how sad they are that their fish died because if they can share a coping mechanism, that helps me! If not, maybe we can go do something fun together to distract ourselves. Sooo many people deal with anxiety, depression, major insecurities, family problems, and are desperate to connect with someone. At the end of the day we're all feeling a lot of the same things, just for different reasons.

    My last suggestion is that when everything gets overwhelming and all you can see is a future of paying bills and neverending medical appointments, I know it helps me to focus on what I HAVE to do TODAY. I do those things, and then if the stress is too much to continue being productive, I cut myself some slack and think "good for you, you were productive, you've done enough, you're moving forward". Then I focus on doing something relaxing or fun. Easier said than done, I know but make sure you take time to recognize how completely amazing you are for being able to work, go to school AND be treated for cancer without a clear end date to look forward to. I honestly can't do at 35 what you do at 22 and I'm so impressed. Hang in there and don't be afraid to let other support you in whatever small ways they can. 100 people helping you a tiny bit can be as good as 1 person helping you in a major way.

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