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Trying to move on after treatment

survivor31's picture
survivor31
Posts: 72
Joined: Apr 2010

Hi all im new here in october 09 I was diagnosed with nasopharyngeal carcinoma im 31 years old with three children still four and a half months after treatment im still trying to cope I thank God im still alive but it is very hard to deal with what the cancer has left behind my quality of taste is not that good im still on my feeding tube my family keeps saying it is time to move on and not think about all I have been through and trying to force me to eat foods I cant taste I have a little taste at the tip of my tounge and a little on the sides but the back of my mouth where it is really really dry is where the taste ends it is mute my oncologist says it will get better but about all the post ive read its people thats years out of treatment and still cant enjoy food because of taste I had a total of five tumors two in my throat two on my neck and one im my nose I had thirty five radiation treatments and four months of chemo cisplatin , and my last chemo was march 30 I had and mri that showed no evidence of diesease im gratefull to god for this but this whole thing has been tramatic and is very deppressing for me I have very little side effects from treatment a little bit of numbness and tingling in my toes and dry mouth but im in no pain I was wondering if there are any nasopharyngeal survivors who have made it through this trying time and was able to move on : (

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

3 words jump out at me in your post: first your name "Survivor" and then "truamatic" and "depressing". I am a partner of someone who has just finished the surgical phase of treatment and has the chemo and radiation to go. So I cannot comment based on experience of the NPC process; but I can comment on trauma, depression, and surviving. As I look at Mark and see what he goes through it cannot be described as anything less than traumatic. Our lives do not prepare us for this physical assult oun our bodies that ironically results in a cure. But an assult it is. Mark's surgery was like being in a dreadful accicent between his head and neck and a moving vehicle. He has not begun the chemo and radiaiton but I already liken it to warfare between cancer and chemicals and his body is the terraine on which this war will be fought. No one would say war does not create trauma. So your feelings of trauma seem right on. A normal side effect of trauma is depression. While it is normal that does not mean it should be ignored. Depression can run its course without treatment, but the rule of thumb is if depressive symptoms last for 2 consecutive weeks you should seek professional support/evaluation. Will your team of doctors evaluate you for depression? There is a social worker available to us as we need her. This is a part of recovery; and like treatment you do not have to go through it alone. And remember: you, by your own definition, are a survivor. Push through this like you pushed through all the physical stuff. Take care of yourself and let others take care of you. When people say "time to move on" that is like saying "suck it up"; it minimizes what you are feeling. What you are feeling is real and makes sense. Just like you could not make 35 radition treatments go faster, you cannot make your post treatment feeling process go faster or go away. Accept these feelings you have, grieve the losses you have experienced, reach out for professional support, and accept this as part of the process of reclaiming life. You are a survivor.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

My last rad was 4/09. All my Nutrition was gotten thru the tube for 7-weeks during treatment, and then used a little while after- gradually weening myself off by going on an Ensure diet; followed by Pancakes and Ensure, with a daily Multi-vitamin. The cold of Ensure was okay, right away. Never did put any down my tube, and never bought any more Formula after treatment. It's a gradual thing, with trials and errors to find the foods that are okay. By 6-months after the last rad I was eating chef-style salads, bigtime. Funny thing is, there's some of us that have found the Hotter foodstuffs, like peppers, are actually all right by us. Our taste buds have taken a hit, and some of the hot stuff actually registers as rather nice to the taste. Funny thing is what made me realize I could eat again: at a Company golf outing, I tried a Brat in the clubhouse with mustard and pickle relish- and was shocked that it tasted pretty good! The rest is history with me.

Would advise you to get into the taste-testing mode, this long after treatment, to find what is all right by your new taste buds. Can be unpleasant, at times, but it's not like you haven't experienced a whole lotta unpleasanter things of recent, you know. Could be about time you get this done. And let us know how it goes.

As for the depression- YES. For me, I think it was mostly the post-trauma thing, with the greater part of the battle over with. Would advise talking to your Dr. about- even the Onco should understand, and be able to refer you to someone. Many others have expressed the Downer times- seems to be a common post-treatment thing with most of us.

kcass

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

HI S31,
You sound like you are going through the 'barren wasteland' phase post treatment. 1. Don't stress, its normal. 2. it will get better.

I went into a bad depression straight after treatment and they gave me some meds which helped me sleep and overcome the horrible feelings and emotional trauma I was in. See your doctor about this and don't take NO for an answer. It's treatable.

You should start to improve slowly on your eating and taste, but it is slow so focus on the brighter patches of your days as they will slowly overtake the darker patches. Measure your improvement by the weeks- not by the day. You may experience some ups and downs still. Again that is normal.

Not sure if you are working ?? Keep some nice routines in your day. I used to go out every day for a few hours, and read in a cafe and have a thickshake (not good for me but I was regaining weight). I also took a bunch of supplements to help restore my body which I think helped. (See me Expressions page for more details). Getting some light exercise is important. Nice walks are good and build up slowly from there.

It is a tough road still and eating will be a chore for a while yet but it will improve. Study up on diet - as nutrition will help you along. Diet is very important.

I am 7 months out now and feel great. I went on a 35km bike ride on the weekend (~21 miles) and did fine. Everything is pretty much normal, though I have a dry mouth and some taste issues but it's fine. Just know you have better days ahead. Post here for any issues as there are a great bunch here to help with some answers as you get better.

Stay well.
Scambuster

debbiejeanne's picture
debbiejeanne
Posts: 2357
Joined: Jan 2010

Survivor, Kimba said it RIGHT, your feelings are legitamate and part of your recovery. Who wouldn't be depressed after what we've go thru to live??!!!! NOBODY has a right to tell us to move on and not think about what we've gone thru, NOBODY! How can we not only think about it but be scared to death that it could possibly come back?!! My last treatment was 10/22/2009 and my taste buds are still off. They have gotten much better but they are still a long way from what they were before the radiation. I, like most here, went into a deep depression after my treatment and still suffer with it to some degree today. I also still worry about it coming back. Not as much as I used to, it doesn't overwhelm me every minute of the day, but I still think about it at least 1- 2 times a day. Everything you are feeling is normal and as much as your family loves you, they cannot begin to understand what you have gone thru fighting cancer. Only another person who has traveled that same road can truly relate to your feelings. I had my feeding tube for many months, only had it removed the middle of April. When I eat, the food still gets stuck in my throat sometimes and it may take me 20 minutes to get it down my throat. I can breath the whole time but it is a hassel. Don't have your tube removed until you are comfortable having it removed. My family did try to push me but I just told them they didn't understand and I would have it out when I felt I was ready. You will find lots of support here from people just like you. You will also find that everyone here will be here to support you and help you get back to your "new" normal. The friends I've made here have definitely helped me get this far and I hope I've helped other "newbies" by sharing my experience and info. I hope you will continue to post and let us know how you are doing and also, read to find all the info you are looking for.
You will be in my prayers. Recovery will take a lot longer that the treatments did, so please, be patient with yourself and your body. It does get better.
God Bless,
Debbie

Fire34
Posts: 351
Joined: Feb 2010

I finished my reatment 11/30/09 and my taste is still gone except for just a few things. I also have trouble sometimes swallowing, but what little trouble I have it could be worse if not for the exercise they made me do. It seems like an eternity just to eat one meal etc. But I use mind over matter at this point. I know I used to like this, so I eat it regardless what the new taste is. I got my tube removed approx. 3 months post after I passed a swalow test. As Kimba said you are a survivor, and I use an attitude similar, even if my saliva and taste never come back I am ALIVE!!! So please keep a positive attitude and seek someone to talk too about how you are feeling. Best Wishes & Prayers
Dave

ratface's picture
ratface
Posts: 1234
Joined: Aug 2009

"Take it one day at a time" is bunch of crap. We have to look ahead into the future and believe we will be part of it. Hence the concept of time arises again as only the passing of time will get us to those confidence levels. Yet to get farther down the road we have no recourse than to take it one day at a time and that is just to damn slow when your waiting for a scan result over the weekend and your doctor just canceled your next appointment. You and I have been forced to live in the moment, a fleeting thought of what if this cancer is not gone or what if it;s comming back, thats our destiny and perhaps our greatest gift. I'm only nine months post treatment radiation, chemo, and surgery. I have bad moments and good moments, small increments in time where I switch back and forth. My car wouldn't start for two days and I have had an almost two complete bad days back to back. That day a letter arrived from my oncologist telling me I have hypothyroidism and will be on more medication for the rest of my life. What I am learning is that all the normal crap that happens to people in their lives still happens to us and is actually accentuated because of our emotional state. It's up to you to handle it different. I take anti depressents. I exercise daily. I take control of as much of my life as I can. I choose to not drink, smoke, eat salads and be more tolerant of people. I'm still depressed everyday but not to the point that you are now. It took two psychologists at one point, actually I wasn;t that messed up but was moving from a work appointed paychologist to a private one and the appointments overlapped. I go to cancer group once a month. I come here and read , learn. and provide whatever insight I can. Your depression is normal and will get better. The old timers here can attest to that. I'm not there yet but we are on the same road and it leads out of depression. The feeding tube will go a long way to making you psychologically let go of this disease. Try and eat more and more by mouth and as soon as your doctors agree to take it out get rid of it. It's liberating in a very large sense. The neurapathy of the hands and feet is a side effect of the chemo and your new normal. Most of your taste will come back. Some of your saliva will and some will not. Your smell and touch will get much better. Imrovement is slowwwwwwwww and sometimes you can't see it on a daily or monthly basis but it is happening. I know for sure you are mentally getting better just by posting the question. Thank-you for allowing me to have one of those good moments. Now it's your turn, promise me you will spend sixty seconds in bliss even if you have to tickle yourself for the full sixty!

D Lewis's picture
D Lewis
Posts: 1523
Joined: Jan 2010

Everyone;

Thank you ALL for your wise and inspirational responses. I am now almost two weeks (woot!) out from my last treatment on May 12th. Your responses give me hope that I will continue to get better and better.

Still pretty much a post-traumatic-stress-laden basket case, but there is a little spark of optimism burning inside. Still completely dependent on the PEG, and my oncologist said to give it another week or so before attempting any solid foods, but he did give me a go ahead to try liquids. Have tried small amounts of Ensure Plus (yech too thick), Carnation Instant Breakfast (I can ALMOST taste it!), yougurt (needs a water chaser), jello, soft scrambled eggs (still scratchy) and diced peaches. I figure every day I'll try something else, even if it is only a nibble. Subsisting on those teeny little 8-oz cans of Jevity makes it hard to eat large amounts of anything, just yet.

Loved the story about the brat with mustard and relish. Yummmmm!

Deb

survivor31's picture
survivor31
Posts: 72
Joined: Apr 2010

thank you so much for the response's it was really helpfull you've helped in more ways than you will ever know you guys on this site are awesome it is really hard finding a site with other people that have nasopharyngeal or any hnc cancer can relate or understand what the recovery process is thank you so much and I promise I will smile ratface even if I have to tickle myself : )

debbiejeanne's picture
debbiejeanne
Posts: 2357
Joined: Jan 2010

You may have to tickle yourself a few times thru all this...lol. Take care.
God Bless,
Debbie

rozaroo
Posts: 667
Joined: Apr 2010

I am almost 3 month's post treatment & I totally hear what you are saying. Now I tend to block out the negative conversation's. Untill someone has lived through this nightmare then I shall listen. I am slowly trying to get off of the peg. I am getting the sweet taste bud's back,so cut my Peg feeding down to 3 can's a day. The rest I drink ensure or make a shake with icecream, fruit & carnation instant breakfast. I have to get brave enough to try other thing's. Anything mild or bland seems to go down okay. Hang in there & don't let anyone get you down.

Hondo's picture
Hondo
Posts: 5717
Joined: Apr 2009

I too am NPC 5 years passed last treatment. We are all different and will heal at different stages, from what I read of your post your taste is just stating to come back. For me taste started at the tip of my tongue and worked it way back took a few months but as each week goes by more and more of your taste will start to come back.

For your dry mouth try using biotene Moisturizing Mouth Spray you can get it at Walgreens or the one I prefer is Stoppers 4 Dry Mouth Spray I get on line at www.drugstore.com this will also help with sleeping at night.

All the best to you, welcome to CSN I hope you plan to stay and be part of our family, My God bless you and keep you in his care.

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

Guys, One food to try is fresh Papaya. If you can eat it straight, great, if not you can blend with water or Soy milk and take as a smoothie (Even in your PEG).

Papaya has something like 400% more vitamin 'C' than oranges - so it's a great healing fruit. It may burn a little if you are fresh out of treatment.

Another starter food is cooked rice with lots of water still in so take it like a soup (plain Congee). It won't burn and you don't need to chew much so it goes down well and gives you some carbs. Brown rice is better but that can start when you a feeling more robust. if you can stuff that is really good for you (heathy) and that you like and can eat, get stuck into that. The eating will improve.

Scam

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