If you could tell them just ONE thing......

BugHunter
BugHunter Member Posts: 152
edited March 2014 in Head and Neck Cancer #1
If you could give a new person just starting thier walk through our little corner of Hell just ONE piece of advise(and one only) what would it be. Also, how far into or past treatment are you, just want to see how the advise changes as we progress through Tx and healing.
Silly question I know, but I am just curious.
My advise would be not to be in a hurry to heal, we all heal at different speeds and each and every one of us thought we should heal back to "normal" much,much faster than we did/are.

BILL (nearing 15 months past 14 weeks chem 33 IMRT)

Comments

  • wboaz
    wboaz Member Posts: 48
    #2
    Wow I don't know if there is just 1 thing. I think I have a checklist! :)

    My biggest mistake was not getting the feeding port put in until I was 3 weeks into the IMRT cycle. Even if you aren't going to use it (you could be stronger than me, or just lose taste and not have everything turn extremely bitter) get it put in before the treatment starts so that if there is a complication you don't go days without nutrition (like I did).

    I'm about 30 months past treatment. 33 IMRT treatments and 6 chemo sessions of Cisplatin. Also tonsillectomy and a left neck dissection to remove lymph nodes. Diagnosis Squamous cell carcinoma of the left tonsil with 2 lymph nodes cancerous. 1-P, 2-L, 0-M
  • lolojldunn
    lolojldunn Member Posts: 37
    #3
    Hi Bill, in response to your question my one piece of advice would be to "NEVER GIVE UP". That's what got me through my treatment and to where I'm at today. I'm ten months post Tx.
    Jim
  • jkinobay
    jkinobay Member Posts: 298 Member
    #4
    I too find it hard to stop at just one......(Lay's potato chips also). I think for me the most important thing I learned in general is that you have to be your own health advocate. Speak up, ask questions, ask for repeated explanations, do your own research, etc. Modern healthcare is amazing but sometimes unfortunately a little too expedited. So look out for yourself.

    Jim (8 months past 35 IMRT, 7 Cisplatin chemo, diagnosis SCC left tonsil and one left lymph node, both removed, 6 mo. PET perfectly clear)
  • Dlwdmb
    Dlwdmb Member Posts: 5
    #5
    My advice would be very much like yours Bill. Don't push yourself and think you should be better by a certain amount of time passed treatment. At my one year post treatment point I was still feeling the effects of radiation. I kept putting pressure on myself that it's been a year and I should feel better by now. Well, it took more time for me to feel better and feel as though I could really move on, my energy level started to increase and something in my body clicked and I knew I had turned a corner.

    Debbie
    I'm about 20 months post treatment. 7 weeks chemo and 62 sessions of IRMT. Diagnosis: Adenoid Cystic Carcinoma of the left maxillary sinus with the tumor wrapped around the carotid artery as well as my left optic nerve. Loss of left eye (eventual removial via surgery) and 4 spots of post radial necrosis.
  • dedesert
    dedesert Member Posts: 17
    #6
    Dlwdmb said:

    My advice would be very much like yours Bill. Don't push yourself and think you should be better by a certain amount of time passed treatment. At my one year post treatment point I was still feeling the effects of radiation. I kept putting pressure on myself that it's been a year and I should feel better by now. Well, it took more time for me to feel better and feel as though I could really move on, my energy level started to increase and something in my body clicked and I knew I had turned a corner.

    Debbie
    I'm about 20 months post treatment. 7 weeks chemo and 62 sessions of IRMT. Diagnosis: Adenoid Cystic Carcinoma of the left maxillary sinus with the tumor wrapped around the carotid artery as well as my left optic nerve. Loss of left eye (eventual removial via surgery) and 4 spots of post radial necrosis.

    Tomorrow may be a better day......
  • 3_Putt
    3_Putt Member Posts: 18
    #7
    Getting the PEG tube is a
    Getting the PEG tube is a good one. It might have been my #1, but I'm going to have to with, GET A PAIN MANAGEMENT DOCTOR!

    Two years post treatment. Stage 4 to the right tonsil with mets to one lymph node. Surgery to remove the tonsils and lymph node (it was the size of a baseball), then 8 weeks of chemo (Erbitux and Cisplatin) with radiation (33 IMRT).

    Oh what fun I had :) Of course I don't remember a lot of it thanks to my pain doctor. Thanks doc!!!

    I can honestly say that two years later it's almost like it never happened.
  • slickwilly
    slickwilly Member Posts: 334 Member
    #8
    3_Putt said:

    Getting the PEG tube is a
    Getting the PEG tube is a good one. It might have been my #1, but I'm going to have to with, GET A PAIN MANAGEMENT DOCTOR!

    Two years post treatment. Stage 4 to the right tonsil with mets to one lymph node. Surgery to remove the tonsils and lymph node (it was the size of a baseball), then 8 weeks of chemo (Erbitux and Cisplatin) with radiation (33 IMRT).

    Oh what fun I had :) Of course I don't remember a lot of it thanks to my pain doctor. Thanks doc!!!

    I can honestly say that two years later it's almost like it never happened.

    a friend
    I was told that I was going to die. Then my diagonsis was changed and I had a 50% chance. I was in severe pain even on the strongest drugs and dying looked like a pretty good option. My family was in shock. In stepped a young female friend who would listen to me and kick me in the butt when I needed it. She reminded me that my life was not just about me. She kept me fighting when I wanted to give up. She is now a nurse and I am so proud of her. 5 years out from my cancer I give her a huge amount of credit for each day I am alive. I was blessed with a friend that had a huge heart and was always there for me. I would wish everyone had a friend like that!
  • sassyque
    sassyque Member Posts: 44
    #9
    If I Could tell you One Thing
    If I could tell you one thing it would be to never lose faith in the Lord.My diagnosis was very grave.By that I mean,They had no hope for me at all.Fight with everything you have and when the going gets really rough,don't be afraid to ask for more support.Prayer is what saved me and I will continue to praise the Lord for what he did.It has been 5 years for me
  • Christmas
    Christmas Member Posts: 100
    #10
    sassyque said:

    If I Could tell you One Thing
    If I could tell you one thing it would be to never lose faith in the Lord.My diagnosis was very grave.By that I mean,They had no hope for me at all.Fight with everything you have and when the going gets really rough,don't be afraid to ask for more support.Prayer is what saved me and I will continue to praise the Lord for what he did.It has been 5 years for me

    My advice is to stay
    My advice is to stay positive and count your blessings. Most times, it's easier said than done. But that was the only way that I got through the months of treatment. I think back on the good times I've had and try not to focus on the future. It's taking things one day at a time.
  • geezer
    geezer Member Posts: 9
    #11
    find out what you can do to
    find out what you can do to protect saliva glands and tongue (taste buds). 16 months out from 48 rads and 6 chemo treatments for tonsilar sqaumous cell carcinoma. Very little taste and constant dry/pasty mouth.
  • judyloo
    judyloo Member Posts: 40
    #12
    One thing (well maybe three)
    A friend going through ovarian ca met me at a conference one day and when I told her about my husbands diagnosis of Esophageal CA she said every one diagnosed with Ca needed 3 things right away - pain meds, antidepressants and a stool softener (this gal always had a crazy sense of humor, BTW). At the time I was amused and confused by her direct advice but as soon as my husband started treatment (RT/CHEMO) guess what he needed!!! Yup (LOL) all three. Obviously since the beginning of tx (we are now 4 months out from an esophagectomy) the needs we have have become more profound and change with each stage of recovery; humour (black humor or not - directed at the EC) helped us cope enormously, and support from family, friends, coworkers or strangers was sooo important. We got alot of support up front but since the surgery most folks seem to have said well they made it through that so they must be ok and the support has dwindled. Yet every day we deal with the reality of the cancer, the effects of the treatments and the possibility of recurrence. Every single day just as you all do. So we manage by living in the present one day at a time - hopefully one day we will look at the future as we used to with endless possibilities. Until then "one day at a time".
  • sassyque
    sassyque Member Posts: 44
    #13
    judyloo said:

    One thing (well maybe three)
    A friend going through ovarian ca met me at a conference one day and when I told her about my husbands diagnosis of Esophageal CA she said every one diagnosed with Ca needed 3 things right away - pain meds, antidepressants and a stool softener (this gal always had a crazy sense of humor, BTW). At the time I was amused and confused by her direct advice but as soon as my husband started treatment (RT/CHEMO) guess what he needed!!! Yup (LOL) all three. Obviously since the beginning of tx (we are now 4 months out from an esophagectomy) the needs we have have become more profound and change with each stage of recovery; humour (black humor or not - directed at the EC) helped us cope enormously, and support from family, friends, coworkers or strangers was sooo important. We got alot of support up front but since the surgery most folks seem to have said well they made it through that so they must be ok and the support has dwindled. Yet every day we deal with the reality of the cancer, the effects of the treatments and the possibility of recurrence. Every single day just as you all do. So we manage by living in the present one day at a time - hopefully one day we will look at the future as we used to with endless possibilities. Until then "one day at a time".

    Hi Judyloo.God Bless you and
    Hi Judyloo.God Bless you and your husband.It is a rough road and when you stop and think about it.whether someone has cancer or not none of us were promised tomorrow,so well or ill we should all live one day at a time.. Good luck and don't lose faith.Someone bigger than us has everything under control.
  • dedesert
    dedesert Member Posts: 17
    #14
    sassyque said:

    Hi Judyloo.God Bless you and
    Hi Judyloo.God Bless you and your husband.It is a rough road and when you stop and think about it.whether someone has cancer or not none of us were promised tomorrow,so well or ill we should all live one day at a time.. Good luck and don't lose faith.Someone bigger than us has everything under control.

    to Geezer.....yeah that drymouth is difficult to live with
    Especially waking up in the mornings, Lots of soup wit sammiches...no pretzels or potatao chips any more....life has definatly changed for the drier...
  • dragonfly2
    dragonfly2 Member Posts: 13
    #15
    judyloo said:

    One thing (well maybe three)
    A friend going through ovarian ca met me at a conference one day and when I told her about my husbands diagnosis of Esophageal CA she said every one diagnosed with Ca needed 3 things right away - pain meds, antidepressants and a stool softener (this gal always had a crazy sense of humor, BTW). At the time I was amused and confused by her direct advice but as soon as my husband started treatment (RT/CHEMO) guess what he needed!!! Yup (LOL) all three. Obviously since the beginning of tx (we are now 4 months out from an esophagectomy) the needs we have have become more profound and change with each stage of recovery; humour (black humor or not - directed at the EC) helped us cope enormously, and support from family, friends, coworkers or strangers was sooo important. We got alot of support up front but since the surgery most folks seem to have said well they made it through that so they must be ok and the support has dwindled. Yet every day we deal with the reality of the cancer, the effects of the treatments and the possibility of recurrence. Every single day just as you all do. So we manage by living in the present one day at a time - hopefully one day we will look at the future as we used to with endless possibilities. Until then "one day at a time".

    One thing...maybe three...
    I agree with Judyloo; one day at a time. Humor. Faith and Prayer. I was the care giver, but I was the one that needed the antidepressant! It helped me be more patient, less fearful of losing my husband, and it also helped me keep a clear head (so I think). Everything you said about the support system is so true. When treatment is over the support dwindles. That's when inner strength and faith is crucial. Everyone is different, but I find humor and joy in everyday to help get us through. Afterall, we're in it together.
  • aaz
    aaz Member Posts: 4
    #16
    yes, i agree it is very
    yes, i agree it is very difficult to think of just one thing, i must think longer and get back
  • Unknown
    Unknown
    #17
    This comment has been removed by the Moderator
  • thegirlfriend
    thegirlfriend Member Posts: 142
    #18
    aaz said:

    yes, i agree it is very
    yes, i agree it is very difficult to think of just one thing, i must think longer and get back

    there is life
    after your walk thru the fire, there is a life after cancer.
  • naturenaw
    naturenaw Member Posts: 26
    #19
    Pray to get through the next minute
    I'm like others - hard to pick just one thing... but Prayer is it. I remember praying not to get through to the next day but to get to the next minute. Please dear God just let me get through one more minute and then the minute would flip on the clock and I'd pray to get through the next minute. and so on... I also remember riding in the car with my dad and listening to him say the rosary for me as he drove me in for the radiation treatment(I wasn't a very good conversationalist during those sore days!)So when too tired to pray, let others pray for you!

    How far out am I? It's been 4 and a half years and I had 40 IMRT treatments 6 rounds of chemo (supposed to have 7, couldn't make it thru last round!)

    God is good!
  • cwcad
    cwcad Member Posts: 117
    #20
    naturenaw said:

    Pray to get through the next minute
    I'm like others - hard to pick just one thing... but Prayer is it. I remember praying not to get through to the next day but to get to the next minute. Please dear God just let me get through one more minute and then the minute would flip on the clock and I'd pray to get through the next minute. and so on... I also remember riding in the car with my dad and listening to him say the rosary for me as he drove me in for the radiation treatment(I wasn't a very good conversationalist during those sore days!)So when too tired to pray, let others pray for you!

    How far out am I? It's been 4 and a half years and I had 40 IMRT treatments 6 rounds of chemo (supposed to have 7, couldn't make it thru last round!)

    God is good!

    It goes without saying that
    It goes without saying that prayers need to be around. The one single piece of advice I would give it to have a doctor outside the cancer community. One doctor that looks at all that is being done to you as a person and not( as in my case a tongue cancer patient) as strictly a cancer patient. When you find that advocate doctor you will better understand. For I have no fault with oncology nor do I have fault with the radiation doctors. Those doctors go by the numbers and do not see all of the things that can be happening especially if the numbers do not point to anything that is not normal
  • pk
    pk Member Posts: 192
    #21
    cwcad said:

    It goes without saying that
    It goes without saying that prayers need to be around. The one single piece of advice I would give it to have a doctor outside the cancer community. One doctor that looks at all that is being done to you as a person and not( as in my case a tongue cancer patient) as strictly a cancer patient. When you find that advocate doctor you will better understand. For I have no fault with oncology nor do I have fault with the radiation doctors. Those doctors go by the numbers and do not see all of the things that can be happening especially if the numbers do not point to anything that is not normal

    Advocate Dr.
    Amen!! The oncos and their staff are great, but you definitely need to have your own Dr. My husband's internist was the one who insisted that he follow up with his sore throat with and ENT. My husband is 5 weeks out of treatment, and his internist sees him often just to keep up on his treatment/recovery and monitor his overall well being. It is a refuge when he goes there as this doc knows him as more than just a patient. Good advice!!!
    PK

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