Very confused by a post written by Gypsy1959

Robyn64
Robyn64 Member Posts: 124
edited December 2014 in Head and Neck Cancer #1

Hi there,

Wasnt going to write , but its really getting to me. Am really confused by a recent post called " scared" by Gypsy1959. I am pretty sure I did not say anything wrong and if I did , I am sorry. But I really honestly cannot see it ?? I am sooo confused and actually a little upset. Tried contacting Gypsy1959 but seems she has left the site . I have absolutely no idea what prompted her last post at all, sooooo confused by it.

I am just totally lost. I had to write to get it off my chest. I have no idea if her last post was actually aimed at my post or not but seems so ?

If she thought me saying it takes 4 weeks before treatment starts kicking in , being hard ? I have absolutely no idea how this was being negative , it is the truth and was trying to help. Nobody can tell after just 7 days of radiation how they will fare by 4/5 weeks.

if she is out there, sorry for trying to help you. But I have no idea what I did ??????

 

Robyn

Comments

  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
    Robyn

    i read all your posts and you were very blunt with your symptoms but encouraging with your hopes that she wouldn't have your experience.  Your experience was what it was...as you said, every one is different.  I would just know that your heart was in the right place and she couldn't deal with what could be her reality in the days ahead.  Maybe she'll come back and explain.  just my opinion.

  • miccmill
    miccmill Member Posts: 248

    Robyn

    i read all your posts and you were very blunt with your symptoms but encouraging with your hopes that she wouldn't have your experience.  Your experience was what it was...as you said, every one is different.  I would just know that your heart was in the right place and she couldn't deal with what could be her reality in the days ahead.  Maybe she'll come back and explain.  just my opinion.

    Robyn

    I was watching the thread started by Gypsy1959. 

     

    I will tell you that I received many responses to my fears and questions when my husband was first diagnosed.  I am so very thankful for all of them.  I heard from those who had the worst of it and those who had a little easier time of it.  Never once did I consider any of those responses "negative". 

    From my point of view, it would've been a nasty surprise to have had a lot of white-washed overly encouraging responses.  What I got out of it was that this was an extremely rough treatment but everyone got through it. 

    By the way, your experience mirrored my husbands almost exactly.  He's 4.5 years out, had a PEG tube which he used exclusively for about 8 weeks, began eating and today eats anything he wants.

    Many people gave me the gift of their experiences and also gave us encouragement.  Although the doctors and nurses are encouraging and really interested in getting you through the treatment, hearing from people who've lived it is truly invaluable.

    Thanks for being there Robyn.

     

  • Katie10485
    Katie10485 Member Posts: 41
    it's ok

    I saw your posts and I don't think you said anything inappropriate or wrong.  You were looking out for her and offering advice and your experience.  I would not worry about it as I don't think anyone else here perceived your posts negatively.  

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    I see nothing wrong

    AT ALL with what you posted.  Cancer does different things to each of us and you said just that.  Hopefully she will come back around. 

  • katenorwood
    katenorwood Member Posts: 1,912
    Hey Robyn !

    I'm sorry you got upset over this first of all.  Reading into another's thoughts and feelings while their dealing with this beast is impossible.  So please try to put it out of your thoughts.  We all have different way's of coping, and also because we are each indivduals we also have different reactions to tx's.  None of us are experts on how another will react to them.  We can only relate how we traveled the trip, and what helped us through.  Please continue to share, and I hope Gypsy1959 finds a safe path to get through this crappy trip.  Hugs !  Katie 

  • Robyn64
    Robyn64 Member Posts: 124
    Thank you

    Thank you for your comments. I did get very upset, I am a very sensitive. And to think that I may have upset somebody, I would be devastated, especially in here. I tried to locate her but comes up as error.

    I really did try to help, she said she was fine 7 days into treatment. I really wanted her to be prepared , because by week 4 or 5 it does get harder and I really wanted her to know that. Wasnt trying to be hurtful , negative or nasty. Was really blown away by her last post.

    I would really go out of my way to make sure that those following in our footsteps got as much info as possible. I know how damn scarey it was for me and a blubbering mess at times. I wanted others to know what to expect if it happened to them.

    I dont like knowing there are people out there going this alone and not knowing whats in front of them. I hope she comes back.

    Thank you,

    Robyn

  • Robyn64
    Robyn64 Member Posts: 124
    miccmill said:

    Robyn

    I was watching the thread started by Gypsy1959. 

     

    I will tell you that I received many responses to my fears and questions when my husband was first diagnosed.  I am so very thankful for all of them.  I heard from those who had the worst of it and those who had a little easier time of it.  Never once did I consider any of those responses "negative". 

    From my point of view, it would've been a nasty surprise to have had a lot of white-washed overly encouraging responses.  What I got out of it was that this was an extremely rough treatment but everyone got through it. 

    By the way, your experience mirrored my husbands almost exactly.  He's 4.5 years out, had a PEG tube which he used exclusively for about 8 weeks, began eating and today eats anything he wants.

    Many people gave me the gift of their experiences and also gave us encouragement.  Although the doctors and nurses are encouraging and really interested in getting you through the treatment, hearing from people who've lived it is truly invaluable.

    Thanks for being there Robyn.

     

    thank you

    Thank you so much for your message. Im glad to hear that my experience was similar to your husband s and that he is doing well. I wait for the day that I can eat everything or almost everything. 

    I would like to say that I cant wait to eat spicey food again , but it may never happen. I really miss spicey food, chilli on my burger and indian curries. I take a good whiff every time I pass a curry place but it seems thats al lI will be able to do now :-(

    But have started to eat much more, still getting used to having water to help get some things down, but it seems to be improving slowly.

    Thank you so much :-)

    Robyn

  • Robyn64
    Robyn64 Member Posts: 124

    it's ok

    I saw your posts and I don't think you said anything inappropriate or wrong.  You were looking out for her and offering advice and your experience.  I would not worry about it as I don't think anyone else here perceived your posts negatively.  

    thank you

    Thank you so much Katie :-)

  • Robyn64
    Robyn64 Member Posts: 124

    I see nothing wrong

    AT ALL with what you posted.  Cancer does different things to each of us and you said just that.  Hopefully she will come back around. 

    thank you

    Thank you Tracylynn72,

     

    Yes, I agree cancer can make people do weird things. I hope she does come back. Was just trying to help. I hope she gets through her treatment ok.

  • Robyn64
    Robyn64 Member Posts: 124

    Hey Robyn !

    I'm sorry you got upset over this first of all.  Reading into another's thoughts and feelings while their dealing with this beast is impossible.  So please try to put it out of your thoughts.  We all have different way's of coping, and also because we are each indivduals we also have different reactions to tx's.  None of us are experts on how another will react to them.  We can only relate how we traveled the trip, and what helped us through.  Please continue to share, and I hope Gypsy1959 finds a safe path to get through this crappy trip.  Hugs !  Katie 

    Thank you Katie

    You are so right calling it a crappy trip, I do hope she is going to be ok. I hope she comes back for support. 

    Thank you :-)

  • Robyn64
    Robyn64 Member Posts: 124

    Robyn

    i read all your posts and you were very blunt with your symptoms but encouraging with your hopes that she wouldn't have your experience.  Your experience was what it was...as you said, every one is different.  I would just know that your heart was in the right place and she couldn't deal with what could be her reality in the days ahead.  Maybe she'll come back and explain.  just my opinion.

    thank you

    Thank you ,

    I do have a bad habit of not leaving things out, whether good or bad. Was just hoping that she knew it gets a bit harder in the weeks to follow. I was sharing what happened to me and I know of others who experienced similar. Week 4/5 was when it got hard. Was eating well before that. I just hope she will be ok. 

    Robyn :-)

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    Robyn64 said:

    Thank you

    Thank you for your comments. I did get very upset, I am a very sensitive. And to think that I may have upset somebody, I would be devastated, especially in here. I tried to locate her but comes up as error.

    I really did try to help, she said she was fine 7 days into treatment. I really wanted her to be prepared , because by week 4 or 5 it does get harder and I really wanted her to know that. Wasnt trying to be hurtful , negative or nasty. Was really blown away by her last post.

    I would really go out of my way to make sure that those following in our footsteps got as much info as possible. I know how damn scarey it was for me and a blubbering mess at times. I wanted others to know what to expect if it happened to them.

    I dont like knowing there are people out there going this alone and not knowing whats in front of them. I hope she comes back.

    Thank you,

    Robyn

    I hate that

    it has upset you.  I thought your comments were completely fine.  I hated reading certain things when I first got on here, but I knew that everyone was just being honest and telling me more than the doctors would say.  I'm sure it was hard for her to read, but no one here has ever been mean or hateful in the way they have said things...simply honest.  That honesty is what has kept me around because I know that all of us on here mean well and have such good hearts.  ((HUGS)) to you.  I wish the absolute best for this entire family on here.

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    it is in our Heads (and necks)

    Robyn,

    You are experiencing the side effects of writing about side effects.

    By the way, I drank smoothies for 7 months (happily).

    Participate on.

    Matt

  • Guzzle
    Guzzle Member Posts: 710
    CivilMatt said:

    it is in our Heads (and necks)

    Robyn,

    You are experiencing the side effects of writing about side effects.

    By the way, I drank smoothies for 7 months (happily).

    Participate on.

    Matt

    spices

    Robyn, after 6 months I can do spices!

  • Robyn64
    Robyn64 Member Posts: 124
    Guzzle said:

    spices

    Robyn, after 6 months I can do spices!

    I like to hear that !!!!

    Gee Guzzle, I really like your post !!!  I really hope I can enjoy same. I really miss spicy foods. I couldnt handle anything tomato based at all. But in the last 2 weeks have been able to finally eat it with no problems. I am aiming for spicy foods lol. I did try something the other day from the shopping centre, I used to buy it all the time for lunch when out, Thai Chilli Chicken. I thought I would be able to handle it the other day. I wasnt able to , was spluttering like crazy and lucky water was right there, nearly drank the whole bottle lol. Had to bring the whole thing home and watch my son eat it :-(

    But will love the day when I can handle chilli again ( I hope ).

    Thanks Guzzle,

     

    Robyn 

  • Robyn64
    Robyn64 Member Posts: 124
    Thanks everyone

    Thanks everyone, I just hope she comes back when she needs support.

     

    Robyn

  • jtl
    jtl Member Posts: 456
    Feel good site

    I recall when I first started posting on this site that someone had said that this was more of a "feel good" site than some that were more "hard hitting".  I also remember when I was having what I considered the mother of all sore throats I posted that I could only dream of having a nice tasty steak.  Someone replied that they were going to do just that and went into some detail about how they were preparing it and the expectations.  I thought that was unnecessary but it did not offend me. 

    I would much rather know what to expect and prepare for it, in fact I was a little perturbed that my rad onc did not tell me that the rad effects would get worse for a month or two after the last treatment because I was mentally planning for immediate relief and a normal life.  Having said all of that.  I love spicy food and missed it for quite a while.  In fact there was a time where just about everything I tried to eat was like swallowing razor blades.  Well, I am pleased to report that within a couple of months post rads I could start eating mild spicey foods and within 6 months I could eat the hottest of hot.  Someone recently asked me if food tasted the same.  I honestly don't know if it tastes the same as pre rads because I lost if for so long, but it tastes good enough for me.  Fwiw, chocolate was the last sensation to come back.

  • Robyn64
    Robyn64 Member Posts: 124
    jtl said:

    Feel good site

    I recall when I first started posting on this site that someone had said that this was more of a "feel good" site than some that were more "hard hitting".  I also remember when I was having what I considered the mother of all sore throats I posted that I could only dream of having a nice tasty steak.  Someone replied that they were going to do just that and went into some detail about how they were preparing it and the expectations.  I thought that was unnecessary but it did not offend me. 

    I would much rather know what to expect and prepare for it, in fact I was a little perturbed that my rad onc did not tell me that the rad effects would get worse for a month or two after the last treatment because I was mentally planning for immediate relief and a normal life.  Having said all of that.  I love spicy food and missed it for quite a while.  In fact there was a time where just about everything I tried to eat was like swallowing razor blades.  Well, I am pleased to report that within a couple of months post rads I could start eating mild spicey foods and within 6 months I could eat the hottest of hot.  Someone recently asked me if food tasted the same.  I honestly don't know if it tastes the same as pre rads because I lost if for so long, but it tastes good enough for me.  Fwiw, chocolate was the last sensation to come back.

    thanks

    Gee, thank you Jul.  So glad to hear that you too are eating spice.  Still waiting for that day sooo badly. I can now eat tomatoes which I couldn't earlier. I too really believed there would be instant relief after treatment finished. But on the very last day of treatment I dragged myself into the nurses quarters as they I was not well and went for my final assessment of nurses. They called down the Dr who told me t go to emergency and wait for a bed, was being put in hospital. Didn't get to go home on last day of treatment. I had to text my husband. Was in hospital 1 week with my feeding tube, no appetite and during that week given 2 blood transfusions. Was seeing the yummiest foods go by, couldn't touch it, couldn't for a few more months. I really believed once treatment finished I would improve almost straight away. Whilst in hospital it was a different Dr who told me that it will still get a little worse before it gets better. It's been about 4 1/2 months now and I'm almost feeling like the person I once was, except I have to be careful when eating. Seriously nearly choked the other night, frightened the hell out of me.

    looking forward to spicey days I really hope.

    thanks,

    Robyn

  • Sailor123
    Sailor123 Member Posts: 97
    Robyn64 said:

    thanks

    Gee, thank you Jul.  So glad to hear that you too are eating spice.  Still waiting for that day sooo badly. I can now eat tomatoes which I couldn't earlier. I too really believed there would be instant relief after treatment finished. But on the very last day of treatment I dragged myself into the nurses quarters as they I was not well and went for my final assessment of nurses. They called down the Dr who told me t go to emergency and wait for a bed, was being put in hospital. Didn't get to go home on last day of treatment. I had to text my husband. Was in hospital 1 week with my feeding tube, no appetite and during that week given 2 blood transfusions. Was seeing the yummiest foods go by, couldn't touch it, couldn't for a few more months. I really believed once treatment finished I would improve almost straight away. Whilst in hospital it was a different Dr who told me that it will still get a little worse before it gets better. It's been about 4 1/2 months now and I'm almost feeling like the person I once was, except I have to be careful when eating. Seriously nearly choked the other night, frightened the hell out of me.

    looking forward to spicey days I really hope.

    thanks,

    Robyn

    Robin

    Let it go........ Let it go.......