Don't know what to do...

ChelseaMay
ChelseaMay Member Posts: 5
in Emotional Support #1
Wow, I really don't even know how to start this, so I guess I'll just jump in and try. I am 20-years-old, and I have Hodgkin's Lymphoma. I am having a stem cell transplant, and I am so very scared. There are so many things that can go wrong, and I just don't like living in the world of "what if?". My biggest problem right now, besides the cancer, is my boyfriend. He is so amazing and wonderful and supportive of me, but he refuses to discuss the possibilities of me having short-term and long-term complications from having the transplant. And if I even mention the fact that I may die, he just shuts down completely. He means so much to me and I am so in love with him. He's my soul mate...it is kinda crazy how we met and fell in love...it was like a Hollywood movie. We are separated by space right now...he is in New Jersey and I am in Houston. I guess what I really need is advice to prepare him for what may come. I am scared to tell him everything I want to tell him because he thinks I am so strong and brave when really I'm just a coward trying to deal with this disease. All I want is for him to be happy, and I feel like I'm taking that happiness away piece-by-piece by him going through this with me. I'm so sad....sad and scared.

Also, I am new on here, so if anyone wants to add me as a friend, please do. I am kinda great at giving advice to other people, but not so great at taking my own.

Chels

Comments

  • mmt366
    mmt366 Member Posts: 41
    #2
    know what to do..
    Chels,
    As the saying goes(I think?) " faith needs a doubt" the same goes with courage. You can't be courageous without being scared. Being scared is the trigger for stepping up and doing what needs to get done and that is exactly what you are doing. My wife is battling stage 4 NSCLC and she has been at it for over 17 months, She is the bravest person I have ever met but she too feels that she is preventing me from being happy, but I've got to tell you that it's the complete opposite. Now don't get me wrong, I'm not happy she is sick, I'm happy that we have each other and i can be there for her. I'm happy when I see the look in her eyes when I get home from work, I'm happy that she will ask whoever is sitting with her " is that mark?" is he home from work. I'm happy that we have never lost that soul-mate feeling, even after 22 years married and 29 together. I'm happy we found each other.
    Your boyfriend may be scared but he will come around, You are a remarkable young lady and anything but a coward!
    All the best to you, will keep you in my thoughts and prayers.

    mmt
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #3
    Welcome
    Hello Chels and welcome to our family. First let me say that your profile pic of you is beautiful! You are young, that is a positive. Hodgekins Lymphnoma is one of the curable cancers. I know a guy 29, who was just dx, had treatment, and is doing very well now. I would suggest that you and your boyfriend get together and talk to your drs. I am sure there is a support group at the hospital. Ask many questions. Get the answers. Communication is very important. I was a caregiver for my dad. He passed last March from esophageal cancer with mets to his liver. At his dx I decided that we start writing in a journal. My dad was not too good at communicating his feelings verbally. We also had my mom write in it. This journal proved to be a wonderful thing. And now, mom and I treasure this. Hope this helps. Keep in touch. You can also find info on the hodgekins lymphnoma discussion board, and the chat room.
    Tina in Va
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #4
    journal
    I like Tina's idea of a journal: what if it was a joint journal? You would have the freedom to express your fears, thoughts, ideas and plans, exchange it with your boyfriend (via UPS or FedEx or postal), he could do the same and send it back to you. Sometimes it is hard to verbalize our feelings but writing them down is just as valid.

    Planning for the future is important, Chels. I think your boyfriend (and you) are so young to have to deal with this he may realize he doesn't have a good concept of mortality and may be afraid he is going to say or do something wrong (most people fear that when they deal with cancer patients, no matter their age).

    Just keep talking, Chels, whether the journal idea works or not. Communication is important to any relationship and yours is no different.

    And you are not taking away his happiness: this is a life's journey we are all on and everyone with whom we share something important adds to the richness of our lives. You are a sweet part of his life.

    Come back and let us know how things are going.

    Hugs!
  • ellamenno
    ellamenno Member Posts: 142 Member
    #5
    Hi Chels
    My daughter's name is Chelsea too! I know you are scared. I know you want to be "strong and brave" for your boyfriend, but honey, this is a big deal and you need to be able to share your courage AND your fear with those who love you.

    In 2000 I was diagnosed with stage ivb Hodgkins Lymphoma. I was so frightened and just like you I hopped on the internet and found all the scary stories. Not good. I am here to tell you that Hodgkin's (even late stage) is totally curable. I'm confident that 10 years from now you will come across a young person in your same situation and be able to offer them YOUR words of wisdom. Be who you are dear girl and don't be afraid to come here day or night as someone will be here for you.

    Please keep us posted on your progress. You can PM me if you'd like.

    Peace, Laurie
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #6
    Courage
    You have a great deal of courage. Being scared just proves that. Your boyfriend is probably scared, too. He may think that considering the negative will somehow affect the positive. So often peole will say that you have to stay positive if you want beat this disease. Staying positive doesn't mean that you can't be aware of the dangers involved in treatment. I suspect that your boyfriend is just trying to support you the best way he knows how Being an educated consumer can help you be your own advocate, and will make your outcomes more positive.

    Know that you are not alone. Come here whenever you need to vent or just express your fears. You might also want to put your concerns in a letter to your boyfriend. Sometimes writing can be easier than talking. Tace care, Fay
  • ChelseaMay
    ChelseaMay Member Posts: 5
    #7
    grandmafay said:

    Courage
    You have a great deal of courage. Being scared just proves that. Your boyfriend is probably scared, too. He may think that considering the negative will somehow affect the positive. So often peole will say that you have to stay positive if you want beat this disease. Staying positive doesn't mean that you can't be aware of the dangers involved in treatment. I suspect that your boyfriend is just trying to support you the best way he knows how Being an educated consumer can help you be your own advocate, and will make your outcomes more positive.

    Know that you are not alone. Come here whenever you need to vent or just express your fears. You might also want to put your concerns in a letter to your boyfriend. Sometimes writing can be easier than talking. Tace care, Fay

    Thank You
    I just wanted to thank all of you for your wonderful words of kindness and support. Sometimes it is easier to reach out to strangers...well, a sort of family of strangers in a way I guess. It is unfortunate we all have this disease in common, but the hope and strength of beating this disease brings us all together. Thank you again. You have no idea how your words helped.

    Chels

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