Ready for the Fight?

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  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #42
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    LeoS2323 said:

    Waiting for the fight
    Hi ditto - glad the good people on here seem to have inspired you and prepared you for your personal fight. I like you have been very recently diagnosed, MEC with at least one lymph node involved and an operation to remove them all on one side of my neck soon.

    I'm absolutely ready for the fight - this one life we have is so precious we have to do everything to hold onto it. Personally I have a one and a three year old, the treatments and operations don't scare me, the thought of missing out on them growing up and being a Dad to them is what scares me.

    If anything this waiting period is the hardest of all. I was misdiagnosed as having a branchial cyst for 6 months before what ultimately proved to be a met to a lymph node was removed. My operation to remove it was cancelled 3 times for different reasons (none mine) which cost me 3-4 months. Then it took 3 weeks for lab results including second opinion. Even after being diagnosed I have to wait 2 weeks for a scan and my surgeon is on leave so it will be another month from diagnosis to my operation. It's so hard having this in me and nobody doing anything to fix it.

    I am desperate to start the fight but feel like time is wasting and it could be costing me, making my picture and outlook different. I can fight MEC, and I can steel myself for the treatments and operations but instead I'm just waiting and feeling helpless.

    So ready for the fight? Absolutely - but the medical people here in the UK won't let me start it. They seem determined to give my cancer all the chance it wants to get a head start on me and it's driving me mad! I feel like I'm being held back by my doctors while cancer repeatedly punches me in the face. I don't know what's going on inside but every little ache and pain feels like it making progress. Until I'm fighting I won't feel like I'm on the road to recovery. I feel really positive about this battle but the thing that is killing me is not being able to start it!

    Sorry to hear about your wait
    My post-dx experience was just the opposite. While I was meeting with the ENT to hear the diagnosis, his staff was already arranging for me to see the lead oncologist and radiation oncologist! I was able to see my whole team of docs within 24 hours, and the preparations for chemo and radiation started immediately. They took about a week to agree on my treatments, get me fitted for the mask, etc., and then it all started.

    Mike
  • LeoS2323
    LeoS2323 Member Posts: 160
    #43
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    Mikemetz said:

    Sorry to hear about your wait
    My post-dx experience was just the opposite. While I was meeting with the ENT to hear the diagnosis, his staff was already arranging for me to see the lead oncologist and radiation oncologist! I was able to see my whole team of docs within 24 hours, and the preparations for chemo and radiation started immediately. They took about a week to agree on my treatments, get me fitted for the mask, etc., and then it all started.

    Mike

    National Health Service
    Cheers Mike

    I keep telling myself the lack of speed is due to me having a good prognosis and a seemingly slow grower, but it's still incredibly frustrating!

    My oncologist is a professor with a personal chair for exceptional achievement in head and neck surgery. So I have been dealt some good fortune here! He is one of the best guys in the UK apparently and wanted to do my surgery himself, not feeling the extra time would make a difference; so there is a silver lining! He wants to try to avoid treatment if he can but i think that would be incredibly fortunate. I guess I am just really impatient to get on with it.

    And the timescales are what we get for our tax in the UK for a national health system. So if anyone suggests it in the US say no!

    All the best

    Leo
  • ditto1
    ditto1 Member Posts: 660
    #44
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    LeoS2323 said:

    National Health Service
    Cheers Mike

    I keep telling myself the lack of speed is due to me having a good prognosis and a seemingly slow grower, but it's still incredibly frustrating!

    My oncologist is a professor with a personal chair for exceptional achievement in head and neck surgery. So I have been dealt some good fortune here! He is one of the best guys in the UK apparently and wanted to do my surgery himself, not feeling the extra time would make a difference; so there is a silver lining! He wants to try to avoid treatment if he can but i think that would be incredibly fortunate. I guess I am just really impatient to get on with it.

    And the timescales are what we get for our tax in the UK for a national health system. So if anyone suggests it in the US say no!

    All the best

    Leo

    HURRY UP AND WAIT
    Good to meet you Leo, first I agree with your reason for wanting to fight, and yes although my wait should be shorter, Im still waiting. Funny story if I may share (I guess its funny if not ironic) My primary doctor reviewed the lump in my neck after I went in complaining about an ear ache, he said your right, lets get a sonogram. Week later sonogram confirmed tumors, next day my Doctor calls at 7 am, wanted to know if I had an ENT Doc, referenced a name of one that worked in the same system as my Doctor and he agreed he was a good ENT, so I made an appt. Problem was he could not get me in for 10 days so I found an ENT just a few blocks from my home that could see me in 2 days, he even came on the phone and spoke to me after seeing my sonogram, never met the man and he gets on the phone, Im sure now I have the right doc. to make a long story short he sent me for a Cat Scan, reviewed the CD and advised me of the throat cancer. Since he was not affiliated with the Hospital I would use for treatment he arranged for me to see another ENT, to my surprise its the same ENT I originally cancelled. So now approx. 3 weeks will have gone by and Im right back to where I started. So I to feel in a Limbo/both want to know and I cannot lie, don't want to know, but will. So for now Im just sitting in the Waiting Room Of Life, with all these great people who have come to sit with me.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #45
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    LeoS2323 said:

    National Health Service
    Cheers Mike

    I keep telling myself the lack of speed is due to me having a good prognosis and a seemingly slow grower, but it's still incredibly frustrating!

    My oncologist is a professor with a personal chair for exceptional achievement in head and neck surgery. So I have been dealt some good fortune here! He is one of the best guys in the UK apparently and wanted to do my surgery himself, not feeling the extra time would make a difference; so there is a silver lining! He wants to try to avoid treatment if he can but i think that would be incredibly fortunate. I guess I am just really impatient to get on with it.

    And the timescales are what we get for our tax in the UK for a national health system. So if anyone suggests it in the US say no!

    All the best

    Leo

    My treatment has been so slow coming
    I thought we already had Obamacare in place. I had my biopsy on March 5th, and am just today seeing the radiologist. I'd be dead and gone from stress if I had to wait month upon month upon month. I'm sorry you have to go thru this long wait!

    p
  • phrannie51
    phrannie51 Member Posts: 4,716
    #46
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    ditto1 said:

    HURRY UP AND WAIT
    Good to meet you Leo, first I agree with your reason for wanting to fight, and yes although my wait should be shorter, Im still waiting. Funny story if I may share (I guess its funny if not ironic) My primary doctor reviewed the lump in my neck after I went in complaining about an ear ache, he said your right, lets get a sonogram. Week later sonogram confirmed tumors, next day my Doctor calls at 7 am, wanted to know if I had an ENT Doc, referenced a name of one that worked in the same system as my Doctor and he agreed he was a good ENT, so I made an appt. Problem was he could not get me in for 10 days so I found an ENT just a few blocks from my home that could see me in 2 days, he even came on the phone and spoke to me after seeing my sonogram, never met the man and he gets on the phone, Im sure now I have the right doc. to make a long story short he sent me for a Cat Scan, reviewed the CD and advised me of the throat cancer. Since he was not affiliated with the Hospital I would use for treatment he arranged for me to see another ENT, to my surprise its the same ENT I originally cancelled. So now approx. 3 weeks will have gone by and Im right back to where I started. So I to feel in a Limbo/both want to know and I cannot lie, don't want to know, but will. So for now Im just sitting in the Waiting Room Of Life, with all these great people who have come to sit with me.

    I know the feeling ditto....
    of wanting to know precisely what and how bad I have it...and the temptation to cover my ears and sing lalalalalalala as I'm being told. I get the same feeling when I'm watching a scary movie....I can only do it thru the cracks of my fingers, cept...this is real life.

    p
  • donnahamblin
    donnahamblin Member Posts: 47
    #47
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    YES!!! The fight is worth
    YES!!! The fight is worth it. I'm not gonna lie to you it can get tough. My husband just completed all rads and chemo a month and a half ago. He's getting back to normal. I'm still tube feeding him because everything tastes like metal but he is trying to eat. We go for the PET scan on the 20th then to the doctor on the 27th for the results. I just know he will be NED! (No Evidence of Disease) Good luck to you and stay on this site. It's simply the BEST!
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #48
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    donnahamblin said:

    YES!!! The fight is worth
    YES!!! The fight is worth it. I'm not gonna lie to you it can get tough. My husband just completed all rads and chemo a month and a half ago. He's getting back to normal. I'm still tube feeding him because everything tastes like metal but he is trying to eat. We go for the PET scan on the 20th then to the doctor on the 27th for the results. I just know he will be NED! (No Evidence of Disease) Good luck to you and stay on this site. It's simply the BEST!

    Be ready for a false positive
    I'm surprised to hear that your husband's first scan is so soon after finishing treatments. Be aware that the first scan can indicate some "hot spots" left from the radiation and give you a scare that the treatments didn't work. Those spots are more likely to be false positive readings, not residual or new cancer cells. It took two post-treatment scans until my hot spots didn't show and the docs could give me my first 100% NED result. Here's hoping your husband's scan is 100% NED, but don't panic if it isn't.

    Mike
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #49
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    Greend said:

    Happy anniversary last month John
    16+ years...my how time flies when we are having fun. Family and grandchildren would keep me in the fight if for no other reason.

    Denny

    thanks
    look forward to your post down the road for the same 16 +
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #50
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    Greend said:

    Happy anniversary last month John
    16+ years...my how time flies when we are having fun. Family and grandchildren would keep me in the fight if for no other reason.

    Denny

    thanks
    look forward to your post down the road for the same 16 +

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