Scared- please read

and  your dad!  It's terrifying.  My cancer was also treatable, removable and after rads they said I was free to live my life.  THAT is a huge blessing.  But, did it make the word cancer any less terrifying?  Absolutely not.  I read the phrase somewhere "Cancer.  It's a word, not a sentence."    

 The good thing is your dad was told it's highly treatable and they are getting started right away.  THAT is a positive.  Once I found out that is what I had, I wanted to get on with it and get the ball rolling quickly.  My family was very upset.  My husband and older son took the news harder.  My younger son was positive and used it as a learning experience and now has decided he wants to go into nursing.  Prayer and my faith in God is truly what has brought me so far.  I'm on prayer lists literally around the US!  I totally believe in the power of prayer and I give God ALL of the glory for my healing. 

 Cancer can be absolutely the scariest thing to hear, but keep things upbeat and positive as best you can.  My doctors, nurses, techs, everyone has said to me that I've had the best attitude.  Well, I can cry my eyes out in the shower and let all that emotion out and then get ready to fight again.  I'm stubborn, so that helps me too  It sounds like your dad is a fighter and has the right attitude about things.  That will be very helpful.  Treatment can get tough.  There are days that just stink and you want to crawl in bed and stay there....you can't.  You have to dig deep and get it done!  He's strong and you'll find out that so are you.  You have a strength in you that will come out because you love your dad so much.

 I haven't had to have a feeding tube, but there are many on this site who have and can give you advice on that if the time comes.  This site is amazing and you will learn so much, get so much support, and feel encouraged.  I find myself on here several times a day! 

 Hang in there!  You can help your dad by just being there and continuing to love him.  He can do this!  There are times that are bad, but the good far outweighs that.  

Cherie,

You are not out of line at all, we welcome caregivers and anyone needing advice.

Let me start with the good news, Most head and neck cancers respond really well to treatment, but the bad news is the treatments and side effects can be pretty brutal. I was diagnosed last August with stage 4A Squamous cell carcinoma with a primary tumor on my right tonsil, and lymph nodes affected on each side of my neck. Since your Dad is starting treatment soon I will give you my two cents worth of what is important right now....

1. Eat everything he can, high fat content, ice cream, protiens, he will likely lose over 30 pounds during treatment, food doesnt taste good once the taste buds are radiated, then there may be mouth sores, and swallowing difficulties. He needs to swallow as much as possible through out treatment even if it is just water, soft diet stuff like eggs, malt o meal, and smoothies.

2. Ask apout having a feeding tube installed while his immunities are still good, mine saved my life.....

3. Consider having a med port installed as chemo can be hard on the veins.....

4.  For you and the family.... Read the super thread at the top of this forum, Take a couple deep breaths and embrace the fact this cancer is very beatable. My treatments ended in November, and my first post treatment PET scan, showed no evidence of disease. On a side note an older sister was diagnosed almost exact same thing about 1 month after me and she too is now cancer free.

5. If his chemo drug is cisplaitan, maybe consider a hearing test, I lost about 40 % of my hearing during treatment..

I still have a comprimised swallow, and have to be pretty careful about what I try to eat, had horrible fatigue and depression after tratment, but about a month ago, I started to get some energy back, working on stamina now.

We will be here when ever you need us and I am sure many will chime in.

Jim

CherieLW,

Welcome to you and your Dad to the H&N forum.

You are scared, your Dad is scared, the family is scared and I am scared with you.  It was only a year ago I walked in your Dad’s shoes, heard the same “you have cancer” and came up with a plan to treat it.  If it wasn’t for a swollen lymph node I would probably be toast as I did not feel a thing on my tongue.

The positive aspects are they found it, you’ve got a good plan to treat it and it is curable.  That means Dad will be around for years to come.

There could be pain, but how much is anybody’s guess.  There are lots of medicines for all kinds of pain; it just depends on how your Dad’s body reacts to treatments.

Broken leg or not, you can be there for him, even as a sounding board or his connection to the H&N forum where you can gather info to pass along.  We all can predict pretty close what will happen and when, all you have to do is ask.

You need to read some of our posts and get acquainted with what is coming your way.  There are many here who are currently starting treatments and many who have just finished.  The more you know, hopefully the less anxious you will be.  Don’t let the cancer consume you, you need to help your Dad in any way you can.

There will be tough times ahead, but somewhere around July 24^th he will be finished and much of this will be in the past.

Be strong,

Matt

I hate to see anyone new come on this forum, but am happy they found it.   I am a caretaker also, my husband is going through his tx at this time. We are half way through rads.... and its scary and hard to watch.  However, as many have said already, it is a curable cancer and attitude is a huge part of recovery.   Although i don't post often, i go here almost everyday because the others give me comfort.   I hope you will get that from all of us too.   Come here often!

CivilMatt said:

PEG me PEG you

CherieLW,

Need tube, no tube,

No tube, eat food

Eat food, no taste, can’t swallow, must haste

Need tube, one tube, two tube, PEG tube, feed tube,

Use tube all is well, drip, drip, feel well,

Feel well all is better, pop the PEG now it’s over.

 

I did it twice, 2 PEGS (one for dessert).  After I finished I think I could have gone PEG free.

PEGless (now) in Oregon,

Matt

Awesome post Civil "Dr Suess" Matt  

"T"

CherieLW said:

Trying to keep that positive vibe!

Phrannie,

I read some about your treatments on here before I made my post.  I was very glad to see you replied to my msg since you had about the same amount of chemo and radiation.  Can you tell me what the feeding tube experience was like for you? I hate that you had to go through this (anyone who has been through it) and I hate even more asking that question...but I just hope it may ease my mind a little.  I'm 30, my dad is 64, but very healthy otherwise...

I talked to dad about a moving company (he could afford it), but he is just stubborn!   He thinks we will have enough help with family and friends. I've tried to collaborate with my sister to pay for one, but dad will not allow it. 

It is a relief to see all the survivors on here and inspirational to read all of your stories.  You are all strong ladies and men.  I know dad will make it through it, I just have to stay on that positive thought trail...

By the way, is your cancer in remission? I really hope so.  I wish the best for you all.

 gone....hasn't been seen since last July or so ....I'm due for my 3 month Onc check next week....where I'm sure they'll set me up for my 9 month scan (I finished rads last June, but had 3 more chemo's after they were done, so didn't finish all treatment until the end of August). 

The tube is no biggie....honest.  I did have some pretty decent cramping the first 3 days or so, then it all subsided, and I just wore it like another appendage.  I actually never used it during radiation....but needed it exclusively after rads ended, and the new chemo began.  It is truly considered minor surgery....basically a large piercing....I too had mine installed before I started treatments and was glad I did, as getting one in the middle just kind of adds misery upon misery.  Glad to hear he's getting a port, it makes getting chemo....as well as extra hydration or transfusions (if needed) a snap....finding a vein during treatment can sometimes be a pain in the patootie. 

Trust me, you will find your place in the "helping" aspect....you might not be able to do the moving/cleaning part....but you're here, and you're learning from people who have gone thru this....the knowledge found here is invaluable.  You'll be the idea-person....the one who can say, "try this", "give this a whirl".....

Hard12find gave you some great advice for this part of the journey....he might as well start eating everything he wants to.  Added weight will soon be gone.  I only lost 16 lbs during treatment, but started out at 97, so tho my weight loss was minimal, I still came out pretty skinny.  Knowing I was going to lose my taste buddies, and my saliva.....I mentally started working on myself to quit eating for pleasure, and start seeing it as a job early on....started eating by the clock instead of only eating when hungry. 

The folks here will fill you in on nifty tricks and tips for getting thru this treatment....practical things that make it more doable.  They're brilliant....plus it's kind of like putting the heads of many Dr.'s and patients from across the country together, so if one idea doesn't work, there's another waiting in the wings.

Another great part of this board, you never have to wait long for an answer....there always seems to be someone here.

p

PS....your dad and I are just about the same age....I was 61 when I started treatment....you said other than having cancer he's in good health.....that's a real plus!! 

CherieLW said:

thanks

Tracy,

Thanks so much for the positive words.  It seems I am much stronger when I'm around my dad bc I have to be...but dealing with the first treatments coming up has been a challenge.  I can tell this is a wonderful site.  Before I posted my post, I was able to read what a lot of people are going through and how they are coming along.  So many people on here really have a good thought process while going through all of this.  I am glad that you have been able to keep your head up through all you have had to face, I'm sure it is not always easy to stay that upbeat when you are feeling down.  Do you know if there is anything that I could do that would help my dad through his radiation or chemo treatments?  I don't know how long they normally last and since I'm down with a broken leg I feel that I am not much help   Thanks again, it is wonderful to interact with people on this site.  Very supportive. 

You are very welcome!  I'm still a newbie here and am learning SO much from these wonderful people.  They have all had great words of wisdom for you  Tell him to eat, eat, eat and enjoy it right now.  I had NO idea about the mouth sores or loss of taste.  I wasn't warned that could happen.  I would have packed on a few pounds before treatment as I had no idea the weight loss that would happen.  I'm down 20lbs since my surgeries in March.  

Keep reading and posting.  Knowledge is power!