New Caretaker

georgiasurfer Member Posts: 63 Member

Greetings everyone,

I haven't posted earlier but I sure have been reading this forum for a couple of months.  My husband had a small "dysplasia" on inside his cheek that his ENT decided needed to come out and was certain it was nothing to worry about.  Imagine my surprise, make that nightmare, when he came out after surgery and told me not only was it cancer, it was Stage IVa and he had to remove part of his jaw bone and two teeth.  We have no idea what caused this mess, he's never had nicotine in his body and it was not HPV.  But here we are, he had #13 of 30 radiation treatments today. 

I'd been so encouraged by reading all your stories and hoped he would land on the easy side of the nasty symptoms, but was not to be.  He has terrible trismus (basically lock jaw) with a seriously limited mouth opening, has an obturator because he can't eat, drink or speak without it, sore throat, mouth sores, dry mouth, no appetite, altered taste buds and nausea......Already and I know it's going to get much worse before it gets better.  He was sure he could get thru without a feeding tube but has asked for one.  He's a healthy man with no other health issues and it's sure not easy seeing him in this condition.

Thank you all for telling your stories.  I can't tell you how much I depend on it.  Everytime something new comes up I check and see if it's "normal".  I thought it was time to chime in and let y'all know I've been lurking and reading about you all, almost daily.  Laughing


  • swopoe
    swopoe Member Posts: 492
    edited August 2016 #2
    Sorry you have to be here,

    Sorry you have to be here, but I understand. My husband had a spot on his tongue last October. He went in to have it removed, and we were not worried. He is young, only 41, and not a smoker or drinker. We were totally shocked to find out it was cancer. It felt so unfair and like a kick in the stomach. But we are on the other side now, and you guys will get here too. I am glad you decided to post. We are here whenever you need us. Hugs and best wishes.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited August 2016 #3
    i lurk no more


    I have imagined your surprise myself, or nightmare as it be, when I found out who was living in my tongue and neck.  It is truly rare that we can pin down the culprit.  One thing for sure, our immune systems got caught sleeping or almost.  After all my lymph nodes did give a heads up.

    Hopefully, he doesn’t get much worse and you can deal successfully with what he has.

    It means a lot to the H&N forum to know that they helped someone,


  • wmc
    wmc Member Posts: 1,804
    edited August 2016 #4
    Welcome to H&N group

    Welcome and sorry you need to be here. However, you did find the best for answers and support.

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    edited August 2016 #5
    Sorry about your Husband

    Sorry to hear about your husband.  It is hard to be a caregiver just as it is hard to be the one with cancer and as a caregiver you must take care of yourself too.  I was my husband's caregiver for 5 years as he fought his battle first laryngeal and then what the doctor said was a second primary at the cervical of his esophagus and then a spread to his lungs.  And yes he was a smoker, pipe only and a beer drinker (which he stopped 10 years before he was diagnosed) and the doctors said that was the cause of his cancer.  He lived on a feeding tube basically from day one and the damage done by the radiation pretty much kept him on a feeding tube until he passed.  Personally, I don't think they really know what causes cancer.  We all have the genes but something activates it.  Our youngest son at 41 had his kidney removed due to cancer and he isn't a smoker or drinker (so far he is a survivor of 7 years).  My youngest sister is a 14 year survivor of triple negative breast cancer (the first in our family) and she is not a smoker or drinker.

    I spoke with many people while sitting with my husband while he underwent treatment and many of them said they didn't smoke or drink but yet they had all types of cancer.  If you think back years ago didn't really hear much about cancer.  My in-laws lived to be 82 and 93, one died from a stroke and one from old age.  They were farmers and grew their own food, no preservatives.  My own mother lived to be 85 and passed from a bad heart, while her youngest sister passed from esophageal cancer at 73 and she didn't smoke or drink and was healthy.  So go explain it.

    Remember too during your journey that everyone reacts differently to treatment, everyone seems to have a different opinion of what to eat, what to take, etc.  Just be sure that you check with your doctors about what types of over the counter herbs, even vitamins your husband can take.  And don't get hung up on life expectancy with what you read and much of what is on the internet is not up to date with current information.  My husband far exceeded the tables I would see about his stage and type of cancer.   You can get too caught up with what you read on the internet.

    Wishing you and your family the best

  • janich
    janich Member Posts: 12
    Thanks for sharing your story

    Thanks for sharing your story. So sorry to hear about your husband's journey because mine has been similar. Check out my story on My CSN Space, Jane's cancer journey. I had a feeding tube for 19 months, and my husband and I did the feeding together: me holding the tube, opening and closing the clasp, while he put the feeding formula in. It kept me nourished and full - I wasn't hungry. I got the tube put in before I started treatment because that was what the doctor advised, but I'm sure your husband can get it during treatment. Having a feeding tube demands alot of time and effort but it's worth it. i was able to have the tube removed in Jan. 2016 and am now on a soft diet. I also have an obturator. Best wishes, and let me know how I can pray for you.

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    edited August 2016 #7

    You have found one of the best sites anywhere.  I so wish I would have found it sooner In My Journey.  There are so, so, many fantastic people here ready to help anyway they can.  Info, questions, venting, stop shopping right here.  They have been a lifeline for me.  So lurk no more, we are all here to help anyway we can.

    I am so sorry this horrific beast entered your life.   The beginning of this year, finally went to see an ENT for my nasty sinus/allergy problems.  He helped me but to our dismay a small spot on my left tonsil area turned out to be cancer. I went in for sinus/allergies came out with cancer.  Sure you question why. I found the best way to deal with this diagnosis is for whatever reason, I think it is a crap shoot.  You can be the healthiest or not, many dodge the bullet, we unfortunately took one to the heart.  So I really have taken it Day By Day, do the best I can that day and start again tomorrow.  It's hell,  but you have each other.  And, you have Us here for help and encouragement.  

  • Fritz
    Fritz Member Posts: 106
    edited August 2016 #8
    Hello and Welcome!

    So sorry you have to be on this site, but as many have said before me, this is a wonderful place to gather helpful information to make it through your journey.

    I believe none of us understand why we were the "chosen" ones. I am 54 years young, perfect health (hadn't even had a sniffle in over 7 years), gym rat, ate well, and on and on. Then one day I have a slight irritation in my throat. 3 1/2 months later I am told I have Stage IVA Tonsil cancer with spread into tongue, soft palate and neary lymph node.  Go figure.

    The one thing that has been a blessing is this site.  So many helpful people that have wonderful suggestions to help us all through our individual journeys through this hell. I am just about 6 weeks post treatment and still in healing mode. So the journey for you has many testy weeks ahead but please post concerns and questions to this site to gather as much help as you can with your specific issues.

    Good luck as you fight this fight!


  • georgiasurfer
    georgiasurfer Member Posts: 63 Member
    edited August 2016 #9

    Thanks to all of you.  We are taking it one day at a time.  With a dose of magic mouthwash this morning he was able to choke down a couple of eggs and even grits.  He's had trouble with oatmeal or cream of wheat but we may try that again now that he has the mouthwash.  We see a surgeon on Monday to discuss the feeding tube.  His rad oncologist is not even sure they can intubate him for surgery due to his mouth opening at this point. 

    Freddie, were you able to continue to work out during treatment?   My husband was still going to his gym thru last week but hasn't had the energy to go this week, which is very upsetting to him.  Hoping he can make it for a little workout today.  He's 58 and very fit and active, or at least was until June 20th.

    Thanks again, it really does help knowing there are others who've fought this battle and come out on the other side, new normal and all.

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited August 2016 #10
    A crapshoot....

    Perfectly said Daisy....One thing I've noticed after 4 years on this board is that there have been very few otherwise unhealthy people.  Most of us have one thing wrong with us, and it happens to be a biggie!  I didn't call in sick for 25 years....and then bingo, I missed six months in a row :).  There will be exercises to help with the Trismus....and they've had good luck using Trental + 400 ui's of Vit E after treatment is over to losen fibrosis.  I'm glad he asked for a feeing many don't want it no matter the cost to their health.  That tells me he's a fighter, and is willing to do what's necessary to get through this and put it behind him. 

    I'm glad you decided to talk to us....this site saved my bacon when I was diagnosed....SO MANY knowledgable, smart....and funny people.  It's good to laugh once in a while....the more often the better.


  • Fritz
    Fritz Member Posts: 106
    Workout fizzles

    Nope on the workout.  I had surgery to remove both tonsils, some of my tongue base, some soft palate and a neck dissection to remove 24 lymph nodes on April 20. After about 4 weeks I was just starting to get back to my gym work, then I had to have my chemo port inserted which then limited what I could do in the gym again. 2 weeks later I started my radiation and chemo on June 1. At that point, I did some workouts for about 2 1/2 weeks then hit a road block.  I was very frustrated as well but realized I needed to let my body heal. So you can see that during the treatments, you will get zapped. I did not have a feeding tube so my primary goal was calorie intake as I started at 175 lbs. By the end of week 3, I was liquid only as the radiation/chemo made eating solids impossible. Protein shakes and commercial supplements kept my calories in check and I finished treatments on July 15 at 172 lbs. I am now just about 6 weeks out and started back to some light workouts last week. 

    As everyone will tell you on this site, we are all different in how our bodies recover from these horrific treatments. I feel lucky in many ways but also understand that my initial physical shape had to help in many ways. So hopefully, you guys will make it through as well.  Just stay determined. There will be many days you just have to "grin and bear" it. But remember it will end and you can start on your path to your new normal.

    Good luck!!