Hello everyone!

The end is in sight! I have 5 more radiation treatments and one more chemo this week. The end is so close but it's been a rough time getting here. I've got sores in my mouth, my throat is sore, my mouth is full of thick mucous that makes me gag at times, taste buds are all gone and I've been exclusively using the feeding tube. I miss food so much! I lost about 10 pounds after the last round of chemo but haven't lost any more.

I'm worried because I hear that the week or two after treatment ends are just as difficult. When will I start feeling well? When will taste come back? How long until I'll be able to eat again and get this dumb tube out?

Doctors say I could certainly be worse off at this point but my spirits are sinking Also, as the end of treatment approaches, I find myself really worried about just going back to the nitty gritty everyday mundane like nothing ever happened. I thought I'd be stronger on the other side of it but I'm even more afraid, especially of waiting to find out if all the treatment was successful. I guess I'm just hoping for a little encouragement to get me through this last week.

Thank you all for your kind words and useful tips. This forum has been wonderful to connect with others who have been in my shoes.

Hi, ALK, you will be feeling much better in a few more weeks. I was lucky and woke up on Day 6 after RT feeling myself again. The mucositis receded quite quickly and so did the skin damage to my neck. And it's so nice not having to go into the treatment centre every day. My taste buds recovered a little after 10 days. It can take a lot longer and there can be an uncomfortable two weeks after treatment ends but the radiation continues to work. At least you can rest at home.

My taste has changed as time has gone on (over 2 years) but just getting some taste back was a relief.

It sounds as if you are doing very well considering you are at the worst stage. Best wishes!!

Ive been wondering how you were making out! You are near the end which is when most patients start to struggle and worry about recovery. When I was near the end, I attempted to quit because of being so weak and sick but my son and nurses refused to allow me to even mention the word quit. That word is NOT in any OCF members vocabulary either!!!

Unfortunately you are correct, the weeks immediately following the end of rads are the hardest. Please dont borrow anxiety by thinking too much about what might happen, it could but maybe it wont too. By focusing on what you have within your control you will get thru this much easier. Focus on your intake. This must be the very most important thing to pay attention to. Every single day for at least the first year post rads you need to take in a bare minimum of 2500 calories and 48-64 oz of water. Every single day you must take a few sips several times throughout the day to keep your swallowing muscles actively working. If you are struggling with water intake, ask your doc to write you a prescription to get extra hydration a few times a week. It will help you to magically feel a little better right after you get a couple bags of fluids. If you can push to take in 3000 or even 3500 calories its not too much and will only help make everything easier. This must be something you do every single day without skimping as you only are hurting yourself and skimping here and there quickly becomes a bad habit turning it into the norm rather than the exception. Im speaking from experience as Ive done this myself and been admitted to the hospital several times for dehydration and malnutrition. Im hoping you avoid the pitfalls I encountered by listening to my advice. Ive nagged many members over the years and found the ones who "know better" end up just like I did... in the hospital feeling terrible.

Try your best to entertain the ideas that are positive and not put too much thinking in what might happen in the future. By making your intake the primary daily goal then you are doing everything in your power to fight the upcoming difficult weeks.

Most patients will notice small taste improvements that come and go about 3-6 weeks after finishing rads. Recovery is a time that can be frustrating with ups and downs plus a few setbacks too. We can never recover quick enough so its common to get depressed at not seeing major improvements. What tastes good one day can taste like burnt cardboard the next and in a couple more days it may be the best thing you've ever tasted. Keep this in mind when grocery shopping, buy small quantities of things. If going out to eat, try buffets where you can try tiny bits of many different foods and will find a couple things that you are able to enjoy. Avoid spices (even salt), anything that takes too long to chew and things that are too thick like peanut butter. If you want peanut butter try putting it in milkshakes to add calories and protein. The following list should help you to find things you can eat like canned peaches or cream soups.

Hang in there! Most of this is already behind you.

List of Easy to Eat Foods


PS....
Here is a recipe for something I used to make and drink when I went thru treatments. The shake has anywhere from 1200-2000 calories depending on how you make it. The list of foods might help too, they mostly have a smoother texture and arent spicy which should be easier to tolerate.


(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder (check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.

Yay, almost done!

I wish I had a crystal ball, but I don't, so I won't guess when you'll feel better. From reading what everyone here has to say, I'd say it varies considerably. In my case, it only took another week or so until I could start eating again. I never fully lost my sense of taste, but the ability to detect sweetness left me for a few months. It returned after awhile.

When I was off of work, recovering from surgery & dealing with radiation, all I wanted was to just get better & return to normal. Thankfully, where I work, we have a short term disability program that allowed me to continue being paid while I sat around the house on my butt, watching Star Trek reruns and pigging out on 2500 calorie milkshakes. But that drive to get back to work, eat all of the things I enjoyed before this dark chapter began, get back on the water with my dragonboat and outrigger canoe teams & basically return to life as I previously knew it, motivated me to shorten my time off as much as I possibly could.

It's more than two years post surgery and about 21 months post radiation for me, and I wish I could say it's as if nothing ever happened. Every time I look down at my wrist, I see the flap. Every time I speak I'll have some difficulty pronouncing a word & may have to repeat myself to be understood. Once in awhile I'll have some difficulty swallowing a chunk of food I wasn't careful enough to cut into a smaller piece, or I bit off more than I can chew & it'll remind my that not all of my tongue is actually a tongue any longer. But then I'm also back on the water several times per week with my competitive teams, working in the office again with more appreciation of what I am capable of, have a new appreciation for all of the friends & family that care about me & my wellbeing, and just generally realizing that I could have had it much worse.

Chin up, the hard part is over.

Hi ALK. I suppose for me the hardest time was just after treatments ended, as everyone said it would probably get worse for 2 weeks and it turned out they were right. That is incredibly frustrating, and you begin to wonder if it will ever end.

Two things kept me from getting down. The first was just taking one day at a time and celebrating any improvement. And the second was setting a goal for myself - after checking with the RO that it was reasonable - of taking a fishing trip about 2 months after treatment ended. That meant getting the PEG out at least 2 weeks ahead of that. It gave me something to shoot for. Not that it was easy -- not even on that fishing trip. But it felt like a return to some kind of normalcy. And it was still just a day at a time. Turns out that after a while you progress without thinking or worrying about it.

Now that I'm coming up on the one-year anniversary of starting rads/chemo I'm feeling stronger all the time, putting weight back on since 2016 started, getting on with things. There are days when I don't even think about cancer. So that's out there for you. Just gotta' grit your teeth and muscle on through. We'll be celebrating your recovery with you here before you know it.

Hang in there. Almost to the finish line. Do expect some time after to feel better but at least you know the treatments are done and doing their job of killing the cancer.

ALK - you're down to the wire now. Congratulations. And while it's true that the first few weeks or month after the end of treatment can be just as hard, remember that all of us are different. You may find it easier. At any event you won't have to trudge over every day to The Ride, as I called it.

The mucositis will go away in time. How dry your mouth will become - well that again is specific to each of us. I did not have a feeding tube, but I well recall the mouth sores and heavy mucus. The sores will heal once they're not being bombarded every day.

Christine has the best advice so please take time to re-read her post. I mainly became a complete couch potato for a good 3 months afterward so don't rush anything. Let your body recuperate and try and get as much food - in whatever form - and plenty of water in. It may not seem possible now but before long it will all be a distant memory.

We're here for whatever you need. Courage!

Hi there! I read your post in hopes that I may gain some insight as to what I will be going through soon. I start radiation in 2 weeks! I just had my consultation and I'm overwhelmed by all the side effects. I have a feeding tube in already so they said that was good. I'm not looking forward to it but I'm looking forward to being cured! We are both young so I'm looking forward to your next post! I want to know how well you are doing! It gives me motivation! I hope you are well!