• Quit?

    Asked by Jalemans on Friday, September 12, 2014

    Quit?

    Has anyone ever felt like it is all just too much? I am thinking...

    24 Answers from the Community

    24 answers
    • BoiseB's Avatar
      BoiseB

      Jalemans I noticed that you are in Minnesota. Are are you anywhere near the Mayo Clinic can you contact them about their cancer care? I know you love your onc. but she is on the mommy track for now and I don't think she would mind if you went elsewhere.

      almost 7 years ago
    • Blondedeedee's Avatar
      Blondedeedee

      Jalemans, I am sorry you feel so despondent. I agree with many of these other posts, be proactive, take charge of your care, its your body. I wish you lived near me in Lancaster, PA. Our Anne Barshinger cancer center is cutting edge, and I never felt alone. I had a total emotional breakdown one day in my radiologists office when he asked a simple question, "how are you?" I just cried and cried, and he said, " I am going to get you some help right now." He called in the social worker, and while we were waiting for her, he just sat with me, and let me cry. She was an enormous help, and then I began seeing a counsellor there. She helped me to figure things out, be proactive, and compartmentalize my concerns. She also helped me to stop imagining scenarios, because she said "scenarios don't come true." They are just our imagination running wild. I am much calmer, and ready to deal with my new normal. I wish you the best, and can only say, please don't give up.

      almost 7 years ago
    • lilymadeline's Avatar
      lilymadeline

      Hi Jalemans,
      I had clear cell sarcoma also stage 1 grade 3, and if you have a rare cancer I know how hard it is getting help for one! This isn’t much of a comparison but I have a rare autoimmune disease as well and getting even diagnosed for that was a nightmare- they had no idea what was wrong with me and it was so frustrating! Even after having a seizures they didn’t know what was causing them. It was very frightening to me at the time ,but eventually I did get a proper diagnosis and treatment but if I hadn’t pushed so hard and kept seeing different doctors I never would have gotten even diagnosed. Can you imagine having seizures without any warning, and no idea what was causing them? That was hard for me at the time.
      And I agree with BoseB that it sounds like your oncologist is on the mommy track for now and probably very distracted from work. Unfortunately sometimes doctors do let their personal life get in the way, they’re human and it can happen.
      But please someone find your way to a big cancer center, that is what you need with any rare cancer! It is very important! And I also agree that you need a social worker to help you at this time, you will probably need transportation and housing. The American Cancer Society has housing available in some cities so ask Greg for help and check about that, and there is medical transportation available for air travel sometimes as well, this is going to take work so I would get the help of a social worker but I recently posted information about Angel Flight West, that is an organization out here in the Western states where pilots donate for free their time and aircraft to fly cancer patients and others to hospitals for evaluation and treatment, but their service has to be requested by either a doctor or social worker. Just their policy. They would be a good place to start to find out about getting transportation in your area because they might be able to refer you to someone that goes to your city. ( those organizations all seem to know about each other ) Obviously it might take some detective work, but it certainly is worth it. Contact MD Anderson, Mayo Clinic, all the heavy hitters. If anyone is familiar and working with your type of cancer it will be at one of those places. My mother had a rare cancer herself and she had to go from her community hospital to UCLA to get treatment because her community hospital didn’t know what to do with her, in fact they weren’t going to treat her at all. I’m just thinking and rambling on and trying to help somehow......
      And so sorry about your family and friends! UGH! But that is why you need a social worker, and do reach out to people you know and ask for help, somebody might just surprise you and reach back! Your swollen lymph nodes could something completely unrelated to cancer, even an infection. Have them look into it but hopefully it will be alright. You sound like such a nice lady I want to help you somehow myself! Hugs! You might even try City of Hope in the Southern California area, they have housing sometimes available and deal with many rare cancers. It is really a wonderful place, I’ve had friends in treatment there and I have gone there a few times for consultations. I’m at a cancer center closer to my home, but only because they actually have a specialist there for my type of breast cancer. Let me know if I can help somehow. Love and God bless! Hugs!!!

      almost 7 years ago

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