Hi Leena,

I finished 7 weeks of Radiotherapy on March 15, after a radical neck dissection (SCC Stage III/IV, primary near left tonsil, 41 lymph nodes removed, one positive).

Yes, at the beginning it is tough, even swallowing water, but a couple of soluble Panadols before, and sometimes a couple of Panadeine Forte helped me. I did not have a "peg", but drank heaps of milk based things (thank goodness I am not allergic to milk!), after my pain killers. One week after Radio I managed to eat 2 prawns (took ages!), and my poor jaw and teeth were shocked, they ached for a day!

Three months out I am enjoying the occasional small piece of meat or fish (fish is better, nice and soft), and loads of vegies. Don't despair, there IS light at the end of the tunnel. Tried a piece of pizza the other night - wonderful! Except for the starchy base.

I lost around 13-15 kilos, and that is a bit much for my build, and am hoping to regain some soon.

Don't despair, just keep that water bottle handy (and stuff for thrush, etc).

Good luck,

Tizz

Leena
You did the right thing and you will feel better shortly. The hardest time for me was the 2 weeks after radiation. Pain and eating was the hardest. Then each day got better and violla you can eat and feel better. I still have some irritation and not up to par for all things to eat 3 mos later but I'm doing great and even though my taste is still about 50% it sure beats what I wnent through. Hang in there you'll be getting better shortly.

Leena: Welcome. Just to add my bit, as we had very similar cancers, I lost 50#, 25% of my body weight, during rad/chemo. I had the peg and if it wasn't for that, I would have shunk to nothing. The worst time is the 2-3 weeks after radiation. I worked through rad as an outside salesperson so I could not take pain meds until I got home. However, I could not even swallow what little saliva I had, let alone water or food, so if it wasn't for the peg I would have been a goner. You will begin to feel better soon. I am 3 1/2 months past rad and eat almost everything. Chips, soda, tomato juice, fish, steak, whatever, so hang in there it will pass.

Hi,Kirk, I can

Dearest Leena,

Everyone has been right on target here, the worst part is 2-3 weeks after radiation. If you had chemo with radiation it may take a little longer to recover. It took 6-8 weeks before the spit gets better and 8-10 weeks before the sores went away for me. I hope that your recovery will continue and you'll be eating again in no time. I welcome you to the board and wish that you weren't going through this at all. It sounds cliche but I wouldn't wish this stuff on my worst enemy. It's very hard. Hang in there it does get better. So happy to hear about the smoothie.
How did it taste? I had problems with cold until just recently.

Ed I had a Dr. Pepper the other day over ice and let the carbonation go down a little and it tasted wonderful.

Talk to you soon.
Lynn

Dear Leena,
Welcome! Dan was pretty sick after 8 weeks of chemo/rad and felt a bit worse the next two weeks. He has not worked since his radical neck dissection on Christmas eve. He used his PEG for 6 months and still lost about 30 lbs. He is now working thru eating soups and other things very slowly and it's harder because he really cannot taste anything...just can smell it. He is doing so much better now about 3 1/2 months post treatment, but it is a long, hard process.

Take care,
Debbie

Hi Leena,
and congratulations on completing treatment! The general rule is a month of recovery for every week of radiation and even though I fought that, I found it to be true. I am over 15 months post Tx and I am still regaining my strength. Your post reminded me of the not so distant past and just how hard it was. You're on the downhill side now (although it may not seem like it yet). Your progress will be measured in 3 week intervals -patience is the key. I struggled with nausea on and off for quite a while post Tx. Zofran is only effective for 3-5 days after a chemo Tx then you must shift to other antiemetics. I used compazine suppositories when the going got rough.

I lost over 60 lbs (no PEG tube) and force feeding myself was very challenging for a while. Morphine for breakthrough pain and topical "swish & spit" (with lidocaine and morphine) got me through along with Carnation Instant Breakfast and milkshakes. Eventually the taste buds returned and I was able to phase in real food. Once I was able to wean off of the pain meds, progress got quicker but don't be too hasty to quit them. It's a real balancing act. I remember my tongue being stuck to the roof of my mouth when I would wake up. A humidifier will help that a bit - I still use one to this day. I was also so "froggy" that people couldn't understand me on the telephone. Constipation and thrush were ongoing post Tx issues, along with the dry mouth. You get through it. I have regained about 25 lbs and my diet has changed naturally. I don't like meat all that much anymore or cookees, chips, breads, etc. I eat a lot of salads and fresh fruits these days along with pastas and foods that contain more moisture in general. I find that carbonated beverages help the swallowing and I used to drink a lot of Coke - I have replaced a lot of that with soda water and lemon to give my teeth a break (and make my RO happy). Like Lynn I would poor it over ice to reduce the carbonation a bit - I also always use straws. I can drink Coke right out the the can now if I want to. The sores and blisters on the tongue took the longest time to heal. I also had an ulceration where the tonsil used to be and because of it's location (and thrush) that took the longest time to heal. The good news is it DID heal and I am about 95% now - even singing in a band again. The "braveness and cheerfulness" will come back - I promise.

Welcome Leena,

Sounds like you did fine coming through surgery.
Now the tough part. Measure your progress in weeks not days. Try and eat if possible, The more you use those muscles the sooner you will be able to eat. "Use it or lose it"

I lost 30 lbs in ten days. I gained it all back in 6 weeks. I had a peg tube. All meds and food went through the tube.

The radiation will continue to work for about three weeks. It will than slowly start to get better.

By the way I didn't think you lost it!! We all have some severe mood swings. Your friends
here at the Oral Cancer Foundation are here to offer support, share our experiences and offer our love. It's a pretty tight group of people.

I wish you nothing but the best,

Dan

Thanks, everybody,
I really think the pain is less already, and the sores on my tongue are healing - I was sure they were the cancer spreading when i first felt them, but the doctor said no. I just wish my mouth did not taste so awful, and since nothing tastes good, toothpaste does not help (actually it burns - even the sensitive kind.)
I think my main problem is sitting at home and being too weak to do anything, and worrying about the next check-up.
I will try Dr Pepper tonight - 3 weeks ago it tasted awful, but maybe it's changed.
Leena

Hi Leena,
The first few months after radiation are the toughest, both mentally and physically. I hit a severe depression when I finished treatment and found out that it was pretty normal for that to happen. Our fear seems to stay at bay when we are doing something to fight the cancer. After treatment is done it seems like we spend most of our time looking over our shoulder, wondering when "it" will come back. My words won't make it feel any better for you but they will at least let you know that it's a normal process and it will pass. We stay fearful about the cancer returning but learn how to cope with that and how it makes us feel. I used to look in my mouth at least 100 times a day and would feel my neck twice as many times. Now I don't think about the cancer every minute, even though it's always there at some level.
I just passed the one year date of my surgery and my one year anniversary for end of radiation is July 10th. The difference in how I mentally and physically feel now compared to just 6 months ago is amazing and you will soon get to that point. Keep your chin up and like Gary and Daniel said, measure your progress by weeks rather then months.
Take care,
Minnie