Well I'm day 10 post treatment and yes - I have been frustrated - I knew things would get worse- and they did - mostly the mouth situation. My throat had been sore alll along but I would just power drink my ensure and then move on with it. Admittedly the pain did get worse and my casual use of the codeine didn't seem to help much - so they prescribed my oxy this past Monday - very low dose. And that has really helped. I just take one prior to eating chug then nap, because it puts me to sleep (Maine Will suggested the oxy on saturday a neighbor had some and because it was over the weekend i borrowed a few 5ml tabs and when they worked I dropped in to see my RO to get a scrip) the most disturbing and traumatic thing from all of this so far has been drooling - I know I said it before. But
it was so bad I couldn't talk, I would choke on it then cause myself to vomit - it was just all around horrible. Even last night I was feeling super frustrated about it. today my throat feels a lot better and the drooling is still there but a lot less bothersome.. yeah - so maybe that's one step out of the darkness for me. I also found that club soda helped a lot. I know the baking soda mixture is great therapeudically but you can only gargle with it - so this past week i decided to switch to flattened club soda and that really helped... Not only did it clear up some of the secretions, but just hydration too was good. I could drink warm water before all this but only in small amounts, and honestly - it was gross and sometimes painful. But even if the club soda was cool, it would go down with no pain, and be refreshing. so that's wheren i am at - my tongue is still swollen, but that appears to be getting better daily. I know i have a long road ahead of me but that's okay - my MO let me go sayng she hoped to never see me again- my senitments are the same, my RO is scheduled to see me in 5 weeks... (unless anything unusual pops up) and my SO is seeing me in July. I am also due to have my new scans done in 12 weeks. My RO said any sooner and we may end up with a false positive, so for now it's about trying to find my new normal... Whatever that may be. I just hope it involves a lot less drool... I do have to say I am totally craving cherry slushies... I sincerely hope I find my taste buds soon. - not a fan of ensure/ boost/ any of those things actually - I miss my fruit, fresh veggies, and drinks, and a whole bunch of other stuff. i am going to attempt to eat very small pieces of cantaloup today to see how that goes.. It's all about one small step at a time.
Well I just though in would up date my post tx info...

Hi Cheryl - yay - 10 days!!! Every single step is a major accomplishment! I'm thrilled you're done treatment and on the (sometimes rocky) garden path to wellness! You have done so well during treatment - the symptoms you are suffering now will lessen, diminish, give way to new ones - I know you know that! I know what you mean about the cravings - my days were spent trying to dream up what would feel good, taste good and be good for me! It's hit or miss at this point of recovery for you but give the cantaloupe a try - hopefully it's a hit with your tastebuds! Sounds good to me - maybe a cantoloupe smoothie with ice and protein powder? Yum! I found that my ability to taste caramel was about the only taste fully preserved - an iced caramel machiato (with full fat milk) was a nice treat for me and made me feel a little more normal to be able to engage in the societal norm of waiting in line and spending too much money at starbucks!

Take care Cheryl - I wish we had been going through treatment together - you have been an amazing source of support for others and an inspiration to me!

Strong wishes and thoughts of wellness to you today, tomorrow and the day after that!

Hey I'm glad you're doing so well. You have been an inspiration to me as well - everyone here has - it's been a great place to do research and get and give support. None of this has been easy but you do what you have to then hope it's enough. My MO said she thought she'd felt the thickened node (the one on the opposite side that required the rewrite of my radiation treatment) this was three weeks ago before my second chemo, and yesterday she said it wasn't there anymore. So hopefully nuking my entire neck area took care of everything.
It's still scary - you want to brush yourself off and walk away but the steps are faltering...

Take care it sounds like you are doing wonderfully.

Cheryl, Great to hear from you. You a bit of gingerale was suggested to me and it's been helping. They said I might want to let it go flat a bit first but I havn't needed to. The fizzies have actually helped me with the "Ensure slime". Just a thought. Your in my prayers and I have soooo much respect for how much of a trooper you are. Will

Hi Cheryl, Jennifer and Will,

You have LOTS of great suggestions and information contained in your posts both here and in other places around the forum. WOW! you three are remarkable! I'm trying to remember all the great suggestions for J's If/When situation and I don't want to miss anything that might be helpful. Not only did I read about some of the things that helped you physically, but there were important things to remember about psychologically making it through treatment.

Is there a specific topic that compiles these things? I may have missed it or something.

Thanks, again, for sharing your experiences!

Sandy

Hi Cheryld,

Glad to hear you're through the treatments, where did you have them done?
It was a little over a year ago when I had 33 rad treatments and 3 cisplatin's at the Odette Ctr. of Sunnybrook Hsp. in Toronto.
It's a busy place and parking is a nightmare. So from a fellow Canadian;
Congratulations, well done!

Hey art- sunny brook? Wow - glad you are doing so well a year out. I was treated through PMH by dr. Irish - my surgeon, dr. j. Cho my rads guy, and dr. siu my Chemo dr. It's a pain of a commute because I live in Mississauga, but worth it to be treated there - I hope.

They were all very good even though i had a bit of a communication issue with dr. Cho. Yes the parking is always a nightmare, particularly at PMH. I sorted it out after the first week though and ended up not having to sell a limb to support my parking expenses.

Sandy I wish there was somewhere it was all saved- I'm not sure but if you click on my name it will bring you up all my postings!! But you have my email so any questions will be fine! Just contact me there - I hope you don't need the info!!!! Though.

will - I adore you... Will try the ginger ale. The club soda works, but if it's fizzy it still hurts a bit mind you if I have pain meds before hand then it shouldn't be an issue, my only concern is it not taste like turpentine - last time I had pop that's what happened very unpleasant - will give it a go.

I truly think it was allergic to my codeine. I had a bit of a rash under my arm where my bra strap sits - I noticed it a week ago. It wasn't really itchy or anything. But I also noticed another rash where my gj tube hangs down - (I used it three times to give myself the liquid codeine). - well it's been 4 days since I had codeine and both rashes are almost gone... Bizarre.

This whole thing is sooo weird.

Glad you all are doing so well. Hugs and healing vibes to you - and sandy prayers your ex isn't a cancer patient !

Hi Cheryl and Congrats on finishing your TX. That is huge. I am only a few steps ahead of you. Finished TX on 3/31, am 7 weeks into recovery and boy you said it, it is miserable. It is worse than getting my tonsils out, worse than chemo or radiation. I won't belabor you with all the details of my challenges, but they are similar to yours. I have secretions galore, not yet experienced any dry mouth, and sores everywhere in my mouth. And tired... I have never been so tired. Thanks to people on this site who told me that this is all normal. I thought I was dying. But it is part of the deal. I send you healing thoughts. Be patient, that is what people told me. It is hard, but I try to have patience. Also, someone told me to measure my progress in weeks, not days. That was wise, too. Take care of yourself. Let your body heal as it must. It knows what it is doing. -Michelle

Thanks - glad you're so far out - I know the secretions are a challenge - mine are easing though gross they are manageable Im not sure if you're drinking alot or anything but I find it really helps it eases the secretions if you take in lots of fluids. I know it sounds weird but I guess more fluids - the thinner the secretions... Dry mouth would be a blessing in some way. My mouth has healed somewhat - my throat is stil sore but getting better. I can definitely identify with the fatigue - it's very frustrating but you have to give your body what it needs - time to heal.

My peg is coming out next week! I have been dying to get it out.

Hope you continue to do well, We all have the same challenges some a little worse than others - butbanyone who gets through this is a hero in my eyes.

Hugs and healing to you!