Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | 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.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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