I finished treatment 3 weeks ago and I thought the hardest part was over. Physically, yes, it is but emotionally, I have never felt more alone and depressed.
I am extremely upset at my inability to taste things normally/eat. I have to use the stupid tube. It's incredibly lonely and frustrating and annoying. I keep trying things to see if I can taste them and then I get upset because I can't. It's alienating.
I know that everyone recovers differently but does anyone have any suggestions on foods to eat? Nothing tastes good and nothing tastes right. But I don't want to rely on the tube. I am completely capable of eating but I just don't and I want this stupid tube out of me.

Congrats on finishing your treatments!!! Since you are 3 weeks post rads, the worst really is behind you.

Recovery as you are finding out, is incredibly frustrating for many OC patients. Its full of ups and downs plus a bunch of set backs from time to time too. After seeing their medical team daily for rads, when it ends the patient often feels like they are completely abandoned. Many also struggle with the mental aspect of their situation. Depression is very common in OC patients (caregivers too). Try seeking out someone to talk things over with. Maybe talking with a therapist who counsels cancer patients would be helpful. Many members have taken anxiety meds to get them thru the rough parts. Its just another tool to get you thru this.

Heres a list of foods that are easier to eat. What tastes good one day might be lousy the next so when buying food only buy small quantities of things as this will be an ongoing see-saw.

List of Easy to Eat Foods


You are not alone with this! Stop back often and post, read or just vent. We understand exactly what you are going thru. Many patients struggle with their recovery, they can not get well fast enough. Its terribly frustrating having ups and downs with some setbacks here and there. After OC treatments, it takes a full 2 years to be completely recovered. This cant be rushed but with proper intake it can be easier. Most patients dont understand that their body has been broken so far down it needs extra fuel to rebuild itself and this cant happen overnight or even in 2 or 3 months. Hang in there, as time goes by you will be able to overcome many of your current issues. One thing Ive learned about recovery is that patients can expect to have at least one month of recovery for every week of rads. We all understand where you are coming from and how frustrating recovery can be.

On the positive side, most patients begin to notice improvements in their sense of taste around 4-6 weeks post rads. This will slowly improve thru the first 4-6 months post rads until its almost back to how things tasted before your OC treatments. You still may see small advances here and there until about the 2 year post rads mark.

Hang in there!!

Hi,

The good news is you are a month past treatment. That is HUGE! There are side effects to deal with without doubt. Loss of taste is certainly one of them. Along with that goes the joy and pleasure of eating. It is now a job you just have to do to get better.

Since you can eat orally, keep trying various things. Head off to a buffet and sample things that you can chew and swallow and hopefully get some taste buds firing.

If you have trouble swallowing, keep blending or grinding food so it is easier to swallow. Taste and swallow will return - just no specific date on the calendar. Good luck.

I SO understand your frustration. I'm going on five weeks post treatment and today for the first time in about two months, I have a terrific appetite. Went to buy a few things I thought I could eat and sounded really palatable. Zero. Awful tasting. So, back to Boost and Ensure and I'll try again later in the week. I do not have a G-tube, have lost 35 lbs. and was of course admonished to get more calories in me. I have manageable pain, can swallow fine but I think I'm just expecting my taste buds to come back faster than is reasonable. Some dark days to be sure but I try to keep my spirits up by reminding myself how fortunate I am and to have opportunities such as this forum to find support, empathy and a willingness to share invaluable info. Thank you all.

Voiceguy, welcome to OCF! Your recovery will get easier. Being 5 weeks out, you still unfortunately have a long way to go. Your sense of taste will get better, it just takes time. I know how frustrating it is to go thru everything tasting awful, even favorite foods. Keep trying to eat different things. Places like buffets offer lots of options. Avoid salty and/or spicy foods.

Hang in there!!!

ALK -

I'm five weeks post radiation, just starting to eat soft foods like baked potatoes, scrambled eggs, salmon, and cheesecake. All easy to chew and swallow. Also have to rely on Carnation Instant Breakfast for morning protein shakes.

Is has been very frustrating going through this process; thankfully, I have a great support group of friends and family or would not have gotten this far. Please reach out to your cancer coordinator or counselor to talk about your situation.

It does get better; one day at a time.


Nancy

The first weeks after treatment are the worst. It took me a year to really feel better, better. Even then at the two year point I noticed a significant improvement.

The emotional struggle for me was unexpected. Every once I still struggle a bit. I keep myself busy. Exercise, work, a little travel.

I changed jobs about 6 months ago. I was wondering how common work changes are after treatment. I'm having a hard time with the routine.

ALK and Voiceguy, Christine (And others here) summed it up very well. We all respond differently, it takes time and patience, and experiment, experiment, experiment! When frustration sets in, relax, pause, and think about where you were and where you are now (And where you're headed)! When we think about that it can square things up in a jiffy! All my best.

Hello, ALK. I know how you feel. Losing the ability to eat or enjoy food separates us from other people.

I didn't have a tube but before I got my taste back I existed on Fortisip (it's like Ensure). It has a bland taste - it doesn't taste foul like normal foods do when the taste buds are damaged. I blended the powdered Fortisip with ice cream and tinned peaches. I remembered that I was meant to have so much Fortisip a day and tried to keep to that. I went through a few cheap blenders in those early days.

Eventually, my taste came back. It was quite sudden with no warning.

The sadness is classic after treatment ends. This is when your mind starts to process what has happened to you. You need help! A health psychologist can help you develop strategies to make you feel better. Writing down how you feel or telling your story can help. Any sort of peer support you can find is useful - like this site. There should be other young oral cancer patients like you out there as well.

This site has a blog function. Over the years I've found it useful to write about my feelings. I think quite a lot of us do.

So, if you can force down some tasteless Ensure, maybe you won't need to use the tube?

Best wishes.

Amanda
Hang in there
It's going to get better
I promise
I'm 9 mos out from treatment t1n2b
I taste almost everything, eating is no longer a full time job
Stay connected - talk about it
I tasted eggs first with a little salt and orange juice
Then green beans and asparagus with a ton of butter
It will happen for you too
Side effects will come and go some faster than others
Keep your eye on the prize and try to be grateful everyday
Xo
Michael

Gulf Coast -

Interesting question. I'm sure it varies from patient to patient and probably has a great deal to do with what type of work, age, and abilities after completing treatment.

Personally, my first time through, 1997, I was back to work within six weeks of completing treatments. Within a year of my diagnosis, I was back to my original weight, working out in the gym and my wife was expecting our first child all while working 50 plus hours a week. (Civil Engineer. The physical aspect of my job is minimal.) The second time, 2014, the impact was much greater and I did consider changing jobs to better accommodate my "new" physical constraints. But now, 2 1/2 years out, I'm finally feeling mostly like myself again. If my career was that of a laborer or some other activity that required extended / excessive energy and strength, or was based in clear effective verbal communication, lawyer, I would be out of luck.

I can understand your comment about the emotional struggle. I've been dealing with cancer and cancer related issues for almost 20 years. I like to say that its gets easier, but that's not exactly true. I have learned to enjoy life rather than running through it. Keeping focused on something is the best way to get through the rough parts.

If the changes in your routine due to the new job are causing problems, I would consider looking for something that is better suited for you at this point in your life.

There are no easy answers.

Good Luck