in the dark

nupshal
nupshal Member Posts: 9
edited June 2013 in Head and Neck Cancer #1

Hi,

Thank you to everyone here for sharing your experiences.  I've been reading posts and have learned much about head and neck cancers, and feel better for the knowledge.  This doesn't help me understand why a friend from work told me in early April he has Stage IV throat cancer, and won't let me support him.  Maybe my version of support is different from what he needs, and maybe he needs space.  I don't know.

We talked a few times after about his diagnosis, and I offered each time to help, specific offers, and no reply.  I feel frustrated that he told me and then nothing.  The news hit me hard.  I've been calling every week and sending email and cards, telling him it's OK not to reply or answer the phone, getting more worried as the weeks pass.  He's probably done with rads and chemo, and the most difficult part for me is not knowing how he's doing, although reading here gives me a good idea.

You have no idea how much your posts are helping me.

He doesn't know I cried during his six or seven weeks of rads and have been asking God to keep him safe.  He knows I care about him and doesn't want me to visit (he lives near me, and I respect his wishes, won't come by unannounced or before asking again), yet everything I read tells me to be supportive, offer specifics, be there to listen, hold a hand, give a hug, let the person know you're there.

Have you pushed people away during treatment?  My mom is a bilateral mastectomy survivor (1969 and 1975), and she told me she took chemo alone, and didn't want anyone around.  I wrote to a few members here and didn't use my name since I felt odd talking about my friend behind his back, and worried he might read it.  Forgive me for doing that, please.

Comments

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #2
    Everyone takes their own path

    Just by getting to this discussion board and participating, people here are indicating that they wish to share their experience as patient or care-giver with others.  While we all agree that the best approach, others wish to go it alone, for their own reasons that we may or may not understand.  When I was first diagnosed my wife and I sat down to discuss how we were going to handle this serious challenge.  We formed "Team Mike" and actively invited friends, family, and others to be members of the team. My motto was, "There is no 'I' in cancer".  It really worked well for us, and I wish I could say it's the best approach for everyone--but everyone has to figure out how they are going to approach this thing and take their own path back to health.

    From the distance you are gving him the best support he is allowing--by learning what he might be going through and understanding this the best way you can.  Keep doing that, so if one day he needs you on his team in person, you'll be ready.

    Mike

     

  • CherieLW
    CherieLW Member Posts: 472
    #3
    Nupshal, 
    You are doing what

    Nupshal, 

    You are doing what is right by offering your help and support.  I'm getting ready to watch my dad go through this.  He starts his first treatment chemo tomorrow. I've been a hot mess and this site has helped me a lot as well. Maybe he just doesn't want you to worry or maybe he just needs to relax.  Whatever reason I hope he comes around soon and I'm sure he will appreciate all you have offered. 

  • Hard12Find
    Hard12Find Member Posts: 218 Member
    #4
    Nupshal,

    I am sure your friend appriciates the offer, other than my primary caregiver, I didn't want or have the energy or strength to deal with anyone else, even family. I needed 100% of my focus to survive treatments. I also went through depression fairly severely during treatment.  I lived in what I called my cocoon (recliner in my bedroom). I am just now getting back to being myself 6 months post treatment......

    Let them know you are there for them, and check in once in a while, it's about all you can do

    Jim

  • jim and i
    jim and i Member Posts: 1,788 Member
    #5
    everyone is different

    We always tell new people that everyone handles treatment and recovery different. My husband only wanted me around. He loved our children, family and friends but as stated before, his whole focus was on getting through the hell. Everyone seemed to understand and always communicated through me via e-mail as they were never sure when the time was available for me to talk. The one thing that my husband appreciated the most was all the cards people sent. Any time he needed an uplift or hope he read those cards. He even uses them today when he feels like we are alone in this. So I guess my advice is, send caeds. You do not need to know how he is doing, he is in God's hands. By praying for him and respecting his wishes you are doing the best thing for him.

    Debbie

    PS Hope I didn't offend

  • nupshal
    nupshal Member Posts: 9
    #6
    thank you :)

    Thank you, Mike, Cherie, Jim and Debbie, for your insights.  I'm Janie, and sorry I didn't say that earlier, and appreciate your input more than you know.  In January my aunt died from leukemia, and one of my favorite cousins died from lung cancer two years ago.  Both asked me not to visit, and to remember them for the love in our family and the times we shared.  Thus, I'm probably transferring some of this anger to my friend, who told me something and then left me hanging with it.  Selfish of me to say this, it's how I feel.

    However, your replies tell me it's the way it is now.  I'm not taking it personally, and no worries, Debbie, nothing said was offensive, all helpful.  I've lit Luminaria for him at our local Relay For Life (couldn's walk this year due to an injured knee), and am encouraged that each time I ask if I'm overdoing the contact, I get no reply so I'm winging it for sure.  

    The caregiver in me wants to do, and maybe not doing is best now.  Best of luck to your dad, Cherie.  Thank you again everyone for being here.

    Janie

  • CherieLW
    CherieLW Member Posts: 472
    #7
    nupshal said:

    thank you :)

    Thank you, Mike, Cherie, Jim and Debbie, for your insights.  I'm Janie, and sorry I didn't say that earlier, and appreciate your input more than you know.  In January my aunt died from leukemia, and one of my favorite cousins died from lung cancer two years ago.  Both asked me not to visit, and to remember them for the love in our family and the times we shared.  Thus, I'm probably transferring some of this anger to my friend, who told me something and then left me hanging with it.  Selfish of me to say this, it's how I feel.

    However, your replies tell me it's the way it is now.  I'm not taking it personally, and no worries, Debbie, nothing said was offensive, all helpful.  I've lit Luminaria for him at our local Relay For Life (couldn's walk this year due to an injured knee), and am encouraged that each time I ask if I'm overdoing the contact, I get no reply so I'm winging it for sure.  

    The caregiver in me wants to do, and maybe not doing is best now.  Best of luck to your dad, Cherie.  Thank you again everyone for being here.

    Janie

    No problem,  I'm always here

    No problem,  I'm always here for anyone who needs to talk.  I understand the scared and worried feelings.  Thanks for wishing my dad luck.  I hope you are able to find some peace sooner than later knowing your friend is working through this.   Hope all is back to normal for all as soon as possible.  

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
    Different Strokes...

    Personally...you have offered, and apparently several times. I wouldn't push the issue more than you have or it might just cause future and obviously current distancing between you.

    You have done all that you can for now, in my opinion....

    Everyone has to come to terms in their own way.

    I had a good fishing buddy that basically cut me loose when he knew I had cancer. I couldn't understand it, and still don't really... But in a later conversation from someone else... He just distanced himself because me having cancer reminded him of his father that he lost a few years ago to cancer.

    Weird to me as you'd think he'd be supportive versus cutting me loose...

    I knew a co-worked also like you that was Dx with cancer... I offered to be there if needed, go to chemo, etc... with him, or just talk, He never called me one time, unfortunately he lost the battle.

    Anywayz, my point..., you can't force someone to accept help.

    Best,

    John

  • nupshal
    nupshal Member Posts: 9
    #9
    understood

    Thanks Cherie, appreciate your support, and John, you're right.  A weekly card is OK to keep lines open, and I definitely don't want to become a nudge.  Thanks for helping me see this.  

    Best,

    Janie

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #10
    No Energy For Friends At Frist

    When I was going through treatment I had 0 energy for visitors and friends.  I wanted to have them around and to gain their support, but I just could not do that.  It was all I could do to go through the treatment, especially after the 3rd week.  When I got feeling better I was very much into contacting my friends and family.  Now I have backed off a little because the side effects make me a little, well more than a little sometimes, grumpy.  Also sometimes friends want to help in their own way, not in a way that is really helpful.  All said I could not make it without the support of my friends and family, but it is not a straight road and has a lot of bumps and turns.

    My suggestion is to just let him know you are around if needed and see what happens.  Its great that you care so much and are so willing to help, many do turn away and you did not do that, good for you!

  • nupshal
    nupshal Member Posts: 9
    #11
    thanks again

    I appreciate all your comments and suggestions, and thank you for helping me see past myself.  There's treatment, and there's after treatment, and I keep forgetting so I keep coming here to read.  I'm in New York, by the way.

    Janie

     

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #12
    I'm the odd man out...

    I'm always the weirdo I guess :)

     

    I loved company after my surgeries and I love it now.  I'm having rads now, no chemo, and I don't feel great by any means but I love when people come to visit me.  Trouble is....the company has dwindled out significantly.  Right after my 2nd surgery, I couldn't keep people out of my house, and now that I actually feel up to someone visiting, no one does.  

     

    I have to agree that I LOVED getting cards and letters in the mail.  I kept every single one of them.  Just a little "thinking of you" card would mean a lot to your friend, I'm sure. 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
    nupshal said:

    thanks again

    I appreciate all your comments and suggestions, and thank you for helping me see past myself.  There's treatment, and there's after treatment, and I keep forgetting so I keep coming here to read.  I'm in New York, by the way.

    Janie

     

    New York

    Oh...., so that explains it..., LOL..  Just teasing, tough crowd here at times... susel

    John

  • nupshal
    nupshal Member Posts: 9
    #14
    New York and visiting

    Compulsive and a NYer, I'm so glad I wrote to this group.  Me imploding would be messy, and that's what would have happened.  Thanks for telling me your thoughts, everyone.  He's probably got a pile of cards and an email inbox full right now; I know he loves the ocean and am looking for a relaxation tape.  Overdoing it here.  

    Hugs to you Smile

    Janie

  • nupshal
    nupshal Member Posts: 9
    #15
    nupshal said:

    New York and visiting

    Compulsive and a NYer, I'm so glad I wrote to this group.  Me imploding would be messy, and that's what would have happened.  Thanks for telling me your thoughts, everyone.  He's probably got a pile of cards and an email inbox full right now; I know he loves the ocean and am looking for a relaxation tape.  Overdoing it here.  

    Hugs to you Smile

    Janie

    Follow up

     

    You're a wonderful group, strong, supportive, and I'm grateful you listened to me.  I haven't been on here since my dad's been ill - he has Alzheimer's, and his condition is progressing, and we (mom and I) take it one day at a time.

    Yesterday, I learned my friend who completed treatment for throat cancer has Stage 3 lung cancer.   A bit of history - I saw him in July at a work meeting, and we had a long talk after that.  Aside from the cane he uses to support himself, and his weight loss, I saw no physical change.  He invited me to dinner a few weeks later, and was I thrilled for him that he ate, talked, drank water, etc. and exhibited no outward residual symptoms.  When I heard the news yesterday, I started to cry again (one of his coworkers told me, after I remarked that he'd not replied to my emails about a work project).  My friend told me months ago it had spread to his lungs; he said during dinner he was having a PET scan mid-August.

    This time, I'd like to be less cautious, less afraid, want to see him at home, and ask forgiveness (for doing it) after rather than permission first.  Time is no less precious than it was; I feel an urgency to see him although his needs come first, not mine.

    Thanks for reading.

    Janie

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #16
    nupshal said:

    Follow up

     

    You're a wonderful group, strong, supportive, and I'm grateful you listened to me.  I haven't been on here since my dad's been ill - he has Alzheimer's, and his condition is progressing, and we (mom and I) take it one day at a time.

    Yesterday, I learned my friend who completed treatment for throat cancer has Stage 3 lung cancer.   A bit of history - I saw him in July at a work meeting, and we had a long talk after that.  Aside from the cane he uses to support himself, and his weight loss, I saw no physical change.  He invited me to dinner a few weeks later, and was I thrilled for him that he ate, talked, drank water, etc. and exhibited no outward residual symptoms.  When I heard the news yesterday, I started to cry again (one of his coworkers told me, after I remarked that he'd not replied to my emails about a work project).  My friend told me months ago it had spread to his lungs; he said during dinner he was having a PET scan mid-August.

    This time, I'd like to be less cautious, less afraid, want to see him at home, and ask forgiveness (for doing it) after rather than permission first.  Time is no less precious than it was; I feel an urgency to see him although his needs come first, not mine.

    Thanks for reading.

    Janie

     

    Sorry...

    Sorry to hear about the lungs......

    Unfortunately each of us deal in our own way....

    Thoughts and Prayers,

    John

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