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re: Advice needed on healing

faithheals09
Posts: 19
Joined: Dec 2009

I am 44 years old and was diagnosed with Acinic Cell Carcinoma back in September. I underwent a parotidectomy on September 15th. Because the cancer was aggressive and had traveled into the lympth node within the parotid gland, my doctor said that radiation was necessary. I am happy to say that I finished radiation treatments last Wednesday, December 9th. It was the happiest time in my life, well aside from my beautiful kids. Now I am beginning the healing process and I am one week into it. Because I lost so much weight during the treatments, I had to have a feeding tube put in. Not fun! I lost my taste buds and I am really struggling with that more than I thought I would. I also have tons of mucous, tickle in the throat from time to time that makes me cough uncontrollably. I just wanted to know what others have experienced and how they dealt with the healing process.

Thanks, remaining very hopeful.

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

Glad to hear you finished your treatment and also glad to have you here with us on CSN.

It normally takes anywhere between 2 or 3 months before your taste starts to comeback and up to a year to fully recovery. As for the mucous it too will get better as your body heals, I am not sure if you are using any kind of milk or milk product if so stop using milk as it help to form mucous. Your weight will also start to come back, I was 230lbs when I started my first treatment went down to 162lbs and now back to 185lbs six years later.

The most importance thing right now is for you to stay positive, your post name tells me you are a Christian. Faith and prayer are the most importance things in your life right now. God hears his children when they pray and somehow when talking to God he gives us the strength to make another day no matter how bad it is sometime.

Let us know how you are doing, if you have any problems this is the place to ask a question. We have all been there, and you know what; it makes me happy to be able to help someone else going through the trial Take care God Bless

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

I remember finishing my treatment very well. I too was happier than I had ever been. Had I been a reader of this forum I might well have had a wonderful trip towards being cancer free almost three years later. I lost sixty percent(160) of my body weight (not all cancer related but most of it was) and weakness and depression have lingered to this day. I hover around 200 so I have gained some weight back as my mental health gets better and hopefully remain cancer free as well.

Drink as much water as you can. It will help the mucous in your throat. Use your food peg. I tried hand feeding myself but I got sick from that so I went to the pump to feed me all day long. A little at a time seemed to work for me much better. I hated carrying the food pump so I stayed home and did nothing. Doing nothing got me depressed. Doing nothing got me out of shape. My fatigue is partially due to all the weight loss. But the depression keeps me tired. I should have sought aide sooner for the depression. Please do not do what I did. Your mental health is as important to your recovery as the treatments that you have just completed.

and Pray a lot!! Good luck!!!

faithheals09
Posts: 19
Joined: Dec 2009

I am so happy to hear from you and to know that there is hope for me!! I too am hopeful that my CT Scans that I have scheduled for March 23rd will render GREAT results.

I will definitely take your advice and drink lots of water to help with the mucous. I am not thrilled about the food pump but it is giving me the nourishment and strength I need to get through each day; so for that I am thankful. I do try to incorporate a little bit of food when I can; well what foods I can tolerate.

Like I told Hondo I do plan on going back to work on Monday so that will help occupy my mind and I am looking forward to it. I can't continue to stay home and do nothing, I need to put to use the strength that God has bestowed on me because I feel that will get me closer to being back to not my old self but my "new self". I will never be back to who I use to be after this horrible experience but I see going through this experience has made me a better person.

Hope that you continue to improve and thank you for sharing your experience with me.

God Bless.

faithheals09
Posts: 19
Joined: Dec 2009

Thank you so much for your reply. I am so happy to came across this site. I know now that I am not alone. There are a few things that I can taste just a tiny bit of and that gives me hope that my taste buds will return soon. After reading your email reply I know now that it will; it will just take some time. I do not use any kind of milk or milk products. I guess the mucous problem will in time get better.

Last weekend was the worst for me because after I finished my treatments I had it in my head that I would recover very quickly and when that didn't happen I was an emotional wreck. I let myself down and that was the hardest thing for me to face. I am a Christian and I turned to prayer more than I have ever done before, which I hate to admit. Talking to God has gotten me through each day and each day I am a little bit stronger. I am strong enough now to go back to work and I will go back on Monday. I am so looking forward to seeing all my co-workers again and to have something to occupy my mind throughout the day. I worked up until the last week of my treatment and it will be so great to be back.

I go back on March 23rd for a CT Scan and blood work and to see my doctor on the 24th for my results. I am extremely hopeful that my results will be GREAT!

I will definitely stay in touch and thank you so much for getting back to me so soon.

God Bless!

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

After treatment you will find that there is a new Normal you, no one comes back at 100% but that is OK I don’t mind being me at 80% of what I use to be, God makes up for the missing part.

I am glad to hear you are going back to work; it will take your mind off of a lot of things. I was really blessed going through treatment my Boss would let me come in late and go home early if I needed and did not complain if he went passed my office and found me laying with my head on my desk. He would just close the door some so no one would disturb me.

I forgot to tell you on the Mucous don’t let it bother you too much, most people understand what you went through. In Church I am the head Elder so I preach once a month, some how God would give me the strength to do what I love to do in his name. One of the problems was the mucous while preaching, I had a little cup up there with me and I would politely step off to the side when needed spit into the cup and go back and start preaching again. The congregation could not see what I was doing but they all knew and somehow everyone understood.

I still preach even though the new normal me don’t allow me to sing like I use to do. But you will find life after Cancer is just as good. We will all be praying for you and waiting for your report in March on the CT scan.

You will also find that everyone here on CSN has something to share, that is what make us strong

Take care and my God Bless you

faithheals09
Posts: 19
Joined: Dec 2009

Tanks Hondo! I'm a paralegal for a law firm and have been with them for 22 years and given that they are just like family to me and I to them. They were completely understanding and gave me all the time I needed to get me through those hard times. They actually don't want me to come back until after the new year but I am so ready now and I really need that right now. So given that I know I have been blessed to have them all in my life.

The mucous does get a little annoying throughout the day but I am not going to let it get me down, I know it will get better.

I truly believe that God works through people to help those that really need someone to lean on through rough times and Hondo he is working through you because you have and are helping me in a huge way! I know that you have touched others as well.

Thanks for lending an ear and being there to help me through this rough time in my life. I am truly blessed to have come across this site and to have been blessed with so many that care.

God Bless you always.

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

What you wrote is shared by many of us, and not uncommon. Still have the feeding tube I got in January, though I haven't used since April. Got all my nutrition thru it for some two months during treatment w/4.0 formula, and it all went okay.

As for how one emerges from this experience- yes, many of us come out of it as far better for the experience, myself included. Time actually slowed-down for me, and is still that way, which is a good thing. And, at the end of my nightly Lord's Prayer, if candid truth be known, I thank the Lord for another day of life, and then tell him it is still good to be alive, and then thank the Lord again. Everytime I do this, yes, a genuine smile does form on my lips. Life, itself, has become a hardfought accomplishment for us to achieve; and, you know, life itself is due cause to give the Lord a heartfelt smile.

As for Hondo's advice- trust it.

Believe.

kcass

faithheals09
Posts: 19
Joined: Dec 2009

Thanks Kent for your message. I give thanks every day for been given a second chance at life. This ordeal has changed me for the better and I will never be the person I was before. I smile a lot more for I am thankful for this life!

A believer!

God Bless You!

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

You're a Vet, now, faithheals: you are a post-treatment Survivor. And you believe. This is real. Anything comes your way, and you got questions/problems with it- ask about. You're only 44 (I'm 55), and you got a lotta life ahead of you. You've got something that all of us have- the experience of head and neck, which is an on-going experience for all of us. Please stay active on this forum. As others have welcomed me, I welcome you.

Believe.

kcass

And, Hondo- God bless you.

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

Thanks for the kind words

Yall are starting to make me cry now, I love this place because of the help everyone gives each other, it is the only way we can all make it passed cancer together.

Kent you are 55, I will make 54 in March, I guess I will need to call you big brother…

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

Me, only 4-5 months older, being your big brother, Hondo- I take that as a great compliment. You are the one with the far-greater experience, so don't for a minute think "the younger=the wiser" is not fact. Believe it.

Yes, believe.

kcass

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

I'm joining in on the '50's club too! lol! I'll be 55 on Sept.14. It's a beautifull age!!

cindy

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

I am just so glad to be able to say yes I am 53 2/3rd and yes I do use AARP

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

HI FH,

I have posted this a few times but I found Glutamine powder very helpful in the healing of the 'mucosa'. That is all the internal area from your mouth all the way to the end of your digestive tract ! You have mainly been affected in the top end. Do a 'Google' search and you will read 100's of similar comments on the stuff (commonly used by body builders to prevent muscle loss). It is a common amino acid, is tasteless and dissolves in water.

At your stage , I couldn't even drink water because it hurt - but if I added the Glutamine, I could drink it. When you are testing new foods and find they burn, the GLutamine water should relieve (neutralize) that pain immediately. It is sold in most Health food stores or online. I am 10 weeks out and still take about 2 teaspoons day. Any burning sensations from food will subside over time and you can expand what you can eat. It is still tough BUT it does get better.

On your recovery, you should be almost be through the 'nasty' two weeks post treatment. That was the worst for me and a place you need to check for signs of depression (Even after that time) and of you find you are suffering depression still, seek professional help as it may contribute to you healing faster.

Hope it's all going well. Hang in there.

Regds
Scambuster.

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

I know exactley how you are feeling. I had a feeding tube for almost 3 months. It saved my life as I couldn't swallow anything but water basically. I didn't gain weight with it, but it kept me alive:)

I just had it taken out last Tues. and what a relief! To me it was another sign of healing. I can now eat just about anything. And I am very fortunate because everything tastes great!! The only problem I do have is there was scar tissue left from the radiation. My Oncologist told me to get used to it. It is now my new anatomy. So I have to swallow everyting to little pieces in order for it to get down. Or I will choke. Not very ladylike when taken out to a nice dinner. lol!!!! "EXcuse me", I think I'm getting a bit of a cough" lol!! Ya right!!

Another thing I do and have done from the start is add a good quality of protien powder in with your Ensure. I still add it to my Ensure drinks,

Get well soon,
Cindy

faithheals09
Posts: 19
Joined: Dec 2009

I am pretty sure I will probably have to keep the tube for a while because I am really not eating enough to have it taken out yet. I can't wait for my taste buds to come back so that I can start eating again!! I do tend to have a very small hint of taste on somethings so that makes me hopeful that I will regain my taste real soon. I've read that zinc supplements help enhance the taste buds, did you ever take them? If so, did it help? I know it will just take time but I am so anxious because I don't want to keep the feeding tube for long.

Thanks for posting your comment it has made me very hopeful!

Hope you and your family have a great Christmas.

God Bless.

Sandy

faithheals09
Posts: 19
Joined: Dec 2009

Hi Scambuster.....thank you so much for your advice on how to deal with the healing of "mucosa"! :) I have read that Glutamine powder does help with that and I will go and get some today. I'll keep you posted on how it works for me. Today makes 2 weeks that I have been done with radiation. I am able to drink water by mouth and I have incorporated to some teas and so far so good. I do tend to have a sore throat throughout the day but I take Tylenol and that tends to help. I even went back to work this week and it felt great!!

Thanks again for your advice and I hope you and your family have a great Christmas.

God Bless

FaithHeals09

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Sandy,

Sounds like you are doing really well. Don't be too hard on yourself. I was readmitted 2 weeks out of treatment while you are going back to work !!! Amazing.

Don't be in a hurry to remove your tube though your enthusiasm to recover is good. Just don't freak out that you aren't improving at the speed you want. It is up to your body. Measure your improvement by the week not the day.

You will know when you are ready to have the tube out but remember it is better to keep it a while longer than needed than the other way around. Once you can manage enough food and are able to maintain your weight, you can then look at getting the tube out.

You mentioned Zinc earlier which is also very good for healing among a host of other supplements. A good High Potency Multi-Vitamin is alway good and there are bunch of other things like Selenium, Shitake, Reishi, Omega 3, Vitamin B Complex, and Vitamin C, and Cordyceps are all very good to help you recover along with the Glutamine Powder. I see a Naturopath (and have one in the family) so I am being advised on what and how much to take.

Take it easy. Have a great Christmas and New Year and remember you have taken a beating and will need some time to recover. Sometime the recovery can be like a Stockmarket graph and you can seem to get worse at times but these rough patches will pass and you will improve. Hopefully your recovery is fast.

Regards
Scambuster in OZ

faithheals09
Posts: 19
Joined: Dec 2009

Hi Scambuster:

Thanks for the advice. I have purchased some Glutamine Powder and that does seem to work. Developed a sinus infection so dealt with that over the holiday and also a severe ear infection in the ear where I had the radiation done. On antibiotics and feeling much better now.

Eating by mount has been a little better every day. One thing I can taste really well has been broiled fish, shrimp and lobster. It really tastes great!!! I was completely amazed how much taste it actually had. However, there are still a lot of things I still can't taste but I'm being patient. I know in time it will get better.

Hope you had a great Christmas and may you and your family have had a great start to a new year!

Take care.

Sandy

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Sandy,

Glad to get positive feedback on the Glutamine Powder. You are doing exceptionally well re your eating and taste. I find fish to be great too also and I can taste sweet things which I usually tend to avoid. My taste is varied and some favorites like Pastas unfortunately are like eating soggy cardboard. I am envious of your success in eating shrimp and lobster. I get the initial taste but it goes very quickly.

Fresh salads are my thing now and also a healthy option re the diet. I am trying scoff as many Avocados (Hondo's advice) which are also a good source of healthy fat.

I had a build up of fluid in my Eustachian Tubes (inner ears) about 6-7 weeks post treatment and started going deaf. I saw my ENT man and he made me 'equalize' and the fluid drained and my hearing came back almost immediately. It seems the rads effect all these areas and you may be prone to some symptoms, hopefully most of them pass.

Thanks for your good wishes and I return all of them and hope we all have a healthier 2010.

Regds
Scambuster

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

I am glad to hear you are doing well and going back to work, take care and may God watch and keep you in his work shop until he has made the finial repairs to your new normal you.
Mary Christmas and a happy new 2010 year

faithheals09
Posts: 19
Joined: Dec 2009

Thanks Hondo!! Hope you had a great Christmas and may the new year bring you an abundance of blessings.

Take care my new friend!

Sandy

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