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RussellSR
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#199606 12/16/2019 9:24 PM
by Drew Skinner
Drew Skinner
Hi;

I haven't posted in a while. I've now finished chemo (did two high-dose Cisplatin and one dose of Carboplatin). They switched me to carboplatin due to aggressive tinnitus following the Cisplatin. Radiation is also finished.

So, after the surgery, chemo, radiation, I'm thankful to be recovering at home. I've become a bit emaciated and am having trouble with ensure. I managed one bottle yesterday, but nothing else. I'm really getting a bit worried about my food intake. I have stocked freezers, etc, here; so having the food is not an issue. My biggest problem for the last week (after the end of treatment) has been a total lack of appetite. I've a lot of saliva (5 out of six glands are fine), but it's really thick. I can no longer spit (following the surgery), so if I try to get rid of it, its a ten minute (semi-spitting, mucousy blob, that I have to coax out). Swallowing stuff like ensure through that is awful.

I think I slept for two days when treatment came to an end and am slowly waking up now. They did not give me a peg or g-tube, so I have to ingest through the mouth. How long for appetitie and desire to eat to return?

I think otherwise I'm healing - my voice is returning to normal (ish) (considering), I will not be able to get my teeth replaced until February/March at the earliest. At my final checkout they were quite certain that the cancer was gone, but I need to get back the 30 or so pounds I've lost. Energy levels are also really low.



Drew.
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#199629 Dec 24th a 10:58 AM
by ChristineB
ChristineB
Thanks for the update, Drew! It’s great to see you posting. Sounds like you’ve done pretty good with everything. It’s definitely not an easy road for anyone.

What you posted you’re struggling with is exactly what every person who goes thru rads/chemo deals with. The biggest warning sign of having major issues in the near future are losing weight during treatments. It’s all one big viscous circle.... no appetite so not eating as much as necessary but that causes more weight loss, fatigue, delaying healing and even worse losing more weight which also means you are losing muscle making you weaker and weaker. I’ve dealt with this exact problem myself for over 12 years. For me it’s nausea that is so severe I can’t go a day without taking I’m now weighing in at an all time low weight which has a gigantic affect on my day to day life. I’ve nagged hundreds of patients to focus on what’s within their control... their intake!!! It’s what you MUST do to get well. Understanding a complete recovery takes 2 years for every OC patient helps make it seem more doable. No it’s definitely not easy but I have faith you can turn yourself around and get back on track. Go for full fat everything and the higher the calories the better... one of my favorites is chocolate milk which has 400 calories a pint!

I’m happy you understand how serious your situation is and posted. It’s all about getting the most calories per bite. To turn your recovery around and start to make better progress requires dedication to your intake. Since you lost 30 pounds already, it needs to be put back on... even if u began your cancer journey tipping the scales at 500 pounds! I guarantee if you follow my advice within only a couple days you will finally begin to feel much better.

From today forward set a goal of taking in 4000 calories every single day no matter what!!! Normally I’d say 2500 to 3/3500 should be enough but your situation is different as without any major changes you will only drag out this frustrating recovery phase longer. No skimping either!!!! By skimping, you are only fooling and hurting yourself. Skimping puts you right on track with the playing “catch up” you will fall right back into that same viscous circle again. Saying to yourself I’ll do better tomorrow NEVER works as tomorrow comes and again you are struggling just to hit the bare minimum of 4000 calories.

Don’t forget water too!!! Every single day 48-64 is of water is the daily minimum. That is necessary to help you thin out the thick gunky globs of phlegm. You can also ask your doc for a prescription to get a portable suction machine to get all the think gunk out of your mouth and throat. The nurse can use the suction machine to clear your mouth and throat of the gunk every doctors visit.... unfortunately most patients must ask specifically for this at their appointment or they won’t get it done. I’m not sure how far you are out from rads but the thick gunk phase usually doesn’t last more than 4-6 weeks post rads. One day you will notlce there’s not very much gunk ... you have officially moved beyond the gunk and right into the dry mouth phase. Taking small sips all day/night helps with the dry mouth plus some over the counter things containing xylitol helps too.

Within a week of pushing yourself and adhering to your daily minimums of 4000 calories and 48-64 oz you will feel so much better 😁. Your body is working OT to rebuild itself after everything you’ve been thru. All those calories will help to give you strength and stamina. I know all too well how difficult it is to eat when you have no appetite but somehow you must overcome and/or ignore it so you can get yourself back on track. Every bite counts!!! Maybe the one more trick I used on my kids when they were little. When you feel you are full and finished eating, tell yourself... “just 2 more bites”. After those 2 bites... “just 2 more bites “ again and again. Breaking it down to bites will help keep you on track with upping your daily calories.

The worst is finally behind you 😁. Once you can get back on track with meeting your daily minimums you will notice all the other minor side effects lessen more and more. Just remember... we all can never get well as quickly as what we think we should be doing. It’s a marathon, not a sprint has been used to describe what going thru OC is like. Take it day by day and soon you will be a year, then 2 post rads and completely recovered, maybe not exactly to the way you were before cancer but I know you will be doing so much better and Han you are today.

Best wishes with everything!!!! Happy Holidays!!!
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