Worst day of my life

Mek32
Mek32 Member Posts: 3

Hello all. So glad I found this site. My mom was diagnosed with adenoid cystic carcinoma 2 weeks ago Which has been misdiagnosed for months as bad sinus/allergies. Every since I received that phone call, I feel as if the air has been taken away from me. I can't rest, eat, or function properly. I stay strong while in the presence of my mother but I fall apart when I'm home. I am a nurse so everyone expects me to be strong and march on but it's difficult when you are sitting on the other side of the table in the patient seat hearing bad news from a physician. Nothing can properly prepare you for this news. I constantly find myself praying asking God for strength during this process and to become strong for my mother. What amazes me is the fact that my mother hasn't shed a tear. She's a woman of strong Faith and she constantly say to her 3 kids that life goes on and we need to stop focusing on her diagnosis and focus on our Faith. She constantly say 'God has the final say'... I find myself doing the big no's and that's spending hours on the Internet doing research that only stresses me out even more. I hope I can find comfort in connecting with others on this site as well as keeping my Faith in God.

Comments

  • KTeacher
    KTeacher Member Posts: 1,103
    Welcome

    Welcome to the club that no one wants to join.  First, stay off of Dr. Google.  I don't know if you live close to you mom, it is goo to have another set of ears at the appointments.  There are others with the same cancer as your mom and I know that they will post.  I have squamous cell.  Even though different cancer, treatment is much the same.  Read the Superthread, at the top of the topics, it will give you an idea of what will happen pre, during and post treatment.  So glad to hear mom is a believer, I found radiation treatment was a good time to pray.  This is a very encouraging, supportive site.  Stay in touch, as Bill says, we are open 24/7, usually someone here to respond.

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N Group

    Yep, watch out on Dr Google as you can get so much wrong information. It is good to research but keep with the medical only and remember the numbers are so generalized, don't use them. I sounds like your Mother is strong, but has accepted it as well. Just take one day at a time. It will be a very rough road she will be going down, but she can do it. As the lovedone and caregiver you need time for yourself and get rest yourself. When she goes to the doctor, write down your/her questions and leave a place for answers, and just hand it to the doctor. Mine wrote the answers in for me as he answered each question. We will keep you all in my thoughts and prayers.

    P.S. This is a great place to come and vent when you have a bad day. We do understand, and have been there.

    Bill

  • avisemi
    avisemi Member Posts: 172
    sorry you are going through

    sorry you are going through this. We went through the same.  For almost 5 months the ENT kept saying it was a sinus infection. We only found out it was scc once my husband's sinus surgery was stopped by the anestesiologist who said there was something wrong. Our entire ordeal started in August last year and treatment ended in February. Dima spend almos 2 months in the hospital, we had tons of ER visits, ended up in ICU a couple of times, etc, etc, etc. So we had a horrible ride. Though, we still consider the week we found out the diagnosis the worse week of the entire experience. I hope it makes you feel better to know that you are going through the hardest part of all of this. It gets better. Yes, treatment is hard but we found that the hardest part was the waiting and waiting and waiting for doctors to come in a give us the bad news. Every doctor that we saw that week just kept piling up the bad stuff. I could not eat, sleep, function that week. So all I did was PRAY and that helped a lot. Once we knew how bad it was and had a plan, it was easier because we could actually do something.

    Thank God everyday for your mom. What an amazing witness. God honors our faith. In Psalms it says "He shows Himself faithful to those who are faithful"  He will honor your mom's faith. I prayed a lot saying God, inspite of all that I see and hear in the natural, I choose to believe. I will remain faithful and trust that you will save Dima. I know you will show your self faithful and honor this. AND HE DID. AND HE CAN DO THE SAME FOR YOUR MOM. Trust, belief, and know that we are here to support you.

  • MrsBD
    MrsBD Member Posts: 615 Member
    Worst Day

    Welcome to to the CSN group. As others have said, the time between diagnosis and starting treatment is terribly difficult. Your faith will never be as important to you as it will be while going through the cancer experience. It will help you find the blessings during an otherwise trying time. As a nurse, you are probably more aware of the complications, etc., but remember that much of the information on the Internet is old. The rate of discoveries for treating cancer has been astounding. My cancer was misdiagnosed for two years and ended up being Stage 4, but nine months after treatment,  I'm cancer free and back to normal. Keep checking in with us for advice and support. I'll keep praying for your family.

  • katenorwood
    katenorwood Member Posts: 1,912
    hello Mek32

    I am a 4 yr. survivor of adenoid cystic carcinoma.  Mine was dx'd in 2011. (submandiblar gland w/perineural invasion)  I'm going to give you a site to investigate, they have the most accurate information for your Mother's dx.  (also treatment options to share w/her onc's)

    www.accoi.org and their sister site www.accrf.org  Don't feel alone ever.  There are quite a few of us on this site with ACC.  I'm so sorry you all have to endure this walk.  But there is hope out here !  Yes, most tx's and surgeries are similar to any H/N dx's, but as you will find out chemo has little to no effect on ACC.  (as of this date)  But this usually is a slow moving cancer.  If you have any questions I can help you with or if I can help direct your family to any and all resources please let me know.  Our site here is awesome, the people who have walked down this road will help you all through the rough times.  Sending my best to your Mother.  She sounds like a strong, loving woman.  Katie

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    welcome

    Mek32,

    Welcome to the H&N forum, where most of us had a “wind knocked out of you” moment, but it will pass and you will feel better. 

    Assuming you have a good team (now) the next step is your mom’s plan.   Once treatment begins you can stop in here for advice on dealing with  side effects.  For me, easily the best advice I received was to drink lots of water and swallow, swallow, swallow.  It’s funny, you wonder, how could I ever forget how to swallow I’ve been swallowing my whole life, but you can and some do.

    I will be praying for your mom’s success, she sounds like a wise person.

    Matt

  • cmai
    cmai Member Posts: 21
    my Husband has ACC`

    Hi,

     

    My husband was diagnosed with ACC may 2015. He's currently going through treatment, has 4 weeks left.

     

    I completely understand how you felt... grieving is normal.  My husband is 42 yo, we have 2 young children 10 and 6 yo.  So my world was upside down, inside out when we got the diagnose.  I'm also in medical field, a physiican assistant in family practice.  We have some commonality.

     

    Most important step you need to do at this time is get as much opinion as you can.  We saw 3 different groups, local INOVA, Hopkins, and UVA.  We ended up at SLOAN per recommendation of both rad onc at Hopkins & UVA to get proton therapy treatment. 

     

    If you have any question, please donot hesitate to ask.  I also find great support at this site.

     

    Kathy

  • Mek32
    Mek32 Member Posts: 3
    KTeacher said:

    Welcome

    Welcome to the club that no one wants to join.  First, stay off of Dr. Google.  I don't know if you live close to you mom, it is goo to have another set of ears at the appointments.  There are others with the same cancer as your mom and I know that they will post.  I have squamous cell.  Even though different cancer, treatment is much the same.  Read the Superthread, at the top of the topics, it will give you an idea of what will happen pre, during and post treatment.  So glad to hear mom is a believer, I found radiation treatment was a good time to pray.  This is a very encouraging, supportive site.  Stay in touch, as Bill says, we are open 24/7, usually someone here to respond.

    Thanks for the support.

    Thanks for the support. Joining this site has helped alot

  • Mek32
    Mek32 Member Posts: 3
    wmc said:

    Welcome to the H&N Group

    Yep, watch out on Dr Google as you can get so much wrong information. It is good to research but keep with the medical only and remember the numbers are so generalized, don't use them. I sounds like your Mother is strong, but has accepted it as well. Just take one day at a time. It will be a very rough road she will be going down, but she can do it. As the lovedone and caregiver you need time for yourself and get rest yourself. When she goes to the doctor, write down your/her questions and leave a place for answers, and just hand it to the doctor. Mine wrote the answers in for me as he answered each question. We will keep you all in my thoughts and prayers.

    P.S. This is a great place to come and vent when you have a bad day. We do understand, and have been there.

    Bill

    Thanks Bill. I do keep my

    Thanks Bill. I do keep my notebook and pens handy when we go to appointments. Its the only way I can make sure I don't forget to ask about certain things

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Mek32

     

    Welcome to the family

    Your mother is right, worrying will not help it will only make you sick, faith is walking ahead with both eyes closed knowing that if you fall God will help you get back up. We have very good doctors but they don’t have the finial word, they can help us to get better when we are sick but only God can extend life. I am 9 years passed the time my doctors gave me to live, they don’t know why or how I am still going, but I know. I will keep both you and your Mom in my prayers.

     

    God Bless

    Tim

  • hwt
    hwt Member Posts: 2,328 Member
    Hondo said:

    Hi Mek32

     

    Welcome to the family

    Your mother is right, worrying will not help it will only make you sick, faith is walking ahead with both eyes closed knowing that if you fall God will help you get back up. We have very good doctors but they don’t have the finial word, they can help us to get better when we are sick but only God can extend life. I am 9 years passed the time my doctors gave me to live, they don’t know why or how I am still going, but I know. I will keep both you and your Mom in my prayers.

     

    God Bless

    Tim

    Welcome

    Sorry your family has to make this journey. You have found a good spot for comfort and support.  You didn't mention your Mom's age.  She already has the perfect mindset by putting this in the Lord's hands.  You maybe familiar with the poem "Footprints in the Sand". if not, I encourage you to read it. I sometimes feel the journey is harder on the family and caregivers than the patient. You have to take care of yourself to be there for your Mom. Try to avoid Google. That can be time better spent with your Mom.

    God Bless,

    Candi

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Mek, i completely understand

    Mek, i completely understand how you feel as it is just how i felt when my mother was dx 37 yrs ago with breast cancer, I had just turned 22.  Doctors didn't know as much back then so i lost her 6 months after her dx.  Great things have happened since then and you should try to see the good.  Treatment as well as knowledge has improved immensely over the years.  I'm glad you're able to be strong when you're with your mom, that is very hard to do.  You should keep your faith also as your mom has a very real and very good chance of beating this cancer.  we will be here for you to help you through this.  i will keep you in my thoughts and prayers.

    God bless you and your family,

    dj