My Journey

13

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  • The Cincinnati Kid
    The Cincinnati Kid Member Posts: 63 Member
    edited January 2021 #42
    1/22. 4th Rad day and 1st

    1/22. 4th Rad day and 1st chemo day. Still no side effects / issues to report. Rad 1st thing in the morning, arrive at chemo office (same hospital complex, different building) at 9:00 am. Hooked up to the IV around 10am. I'm there until 3pm. Most of which is drugs / hydration other than the chemo...cistplastin I think, apologies for spelling. For me, no port as only 3 treatments. My only advice here is, take something to do...its a boring 5 hrs! If what you take to do (computer game on laptop for me) favors your right hand...ie yer right handed and you use a mouse....get the IV in your left arm. Best time to use the restroom is when they change IV bags so you wont have to lug the IV pole around with you.

    4 day booty ban.....feel bad for Mrs Kid.Cool

    Also, oddly, "flush your toilet twice"....especially if you have a dog or cat that uses it as a watering hole....note in the oncology restroom.

  • Remington25
    Remington25 Member Posts: 93 Member
    edited January 2021 #43
    When I sat for chemo I would

    When I sat for chemo I would find myself getting tired. I actually brought a blanket and watch a show on my iPad and would nap for an hour each time. I actually looked forward to the rest time.  Hang in there. I'm only 2 weeks out of treatment today and it's been a roller coaster of feeling better, worse, better, extreme fatigue and a lot of weakness.  This board has been a lifesaver just to hear others experiences to know what to expect because there are times I feel absolutely defeated and then I'm reminded it's only been 2 weeks.  Man I can't wait to eat and taste! I pray it happens soon!

  • The Cincinnati Kid
    The Cincinnati Kid Member Posts: 63 Member
    edited January 2021 #44
    OK, so today is Sunday, my

    OK, so today is Sunday, my 1st chemo was Fri and I dont feel like eating. Nor did I Sat afternoon / evening either. I had thought everyones comments about trouble eating would be due to the sore mouth but I dont have that yet. I feel OK-ish....not sick, no pain, a bit lethargic.

    Just much harder than I thought it would be with the food. Protein shakes and other liquids are no problem.

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    edited January 2021 #45
    Just Do Your Best

    I believe you are pretty early in your treatments so just try and push yourself a little and eat what you can besides the protein shakes. Hang in there we are pulling for you-Take care-God Bless-Russ

  • The Cincinnati Kid
    The Cincinnati Kid Member Posts: 63 Member
    edited January 2021 #46
    8th rad day today. Side

    8th rad day today. Side effects so far are not too bad. A little dry mouth, very mild tinitus in the left ear. Today is Thurs and the chemo 6 days ago pretty much floored me the last 4 days though I seem over the worst of it now. Food wasn't happening and felt completly unmotivated to do anything. Survived on liquid protein shakes. Back on the solids now but its a struggle.

    Almost 1/4 the way through though. Have to say things tougher than I thought and probably worse to come. Good support system with wife and friends though. 

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited January 2021 #47
    TCK,

    I'm sorry to hear it's gotten challenging so early. Communicate freely with your Oncologist. They may be able to adjust your anti-nausea meds, to help.

    If you can still eat solid food, that would be a plus - and certainly keep ingesting food (even drink form) by mouth as much as you are able!

    Give yourself a break on the energy level. Healing takes a lot more out of a person than they realize. Get yourself plenty of rest!

    Hang tough, dude. It will surprise you how soon you will be finished up, and heading back to a normal state of affairs...

    mg

  • The Cincinnati Kid
    The Cincinnati Kid Member Posts: 63 Member
    edited February 2021 #48
    Good day all. Rad treatment

    Good day all. Rad treatment 11 of 33 done today so that puts me 1/3 way through treatment. Every day is different. Yesterday, I had some get up and go, did OK eating. Today not bothering to drag myself out of bed! Wife brought home a Vitamix machine so we tested that out this morning as eating anything solid was highly unappealing today. Tossed in a mixed bag of frozen fruit, some ice and some coconut milk...a purple frozen goo was the result but entirely acceptable for consumption. Now, back to bed with football on TV and the cat hanging out.

    Couple of recommendations working for me.

    Aquaphor...good moisturizer for the sore bits on your neck....make sure your not using it in the hours before treatment though.

    Biotine...pretty good oral mouth rinse and a spray to moisturize the mouth too.

    I'll let you know how the vitamix works out but so far, so good.

  • The Cincinnati Kid
    The Cincinnati Kid Member Posts: 63 Member
    edited February 2021 #49
    Good day all.

    Good day all.

    Today was rad treatment # 19 of 33 and chemo # 2 of 3. getting there!

    Eating is really dificult but there are still a few things that are edible in small portions. 1/3rd of the difficulty is sore throat / dry mouth. 2/3rds of the difficulty eating is the gawdawful taste of most food. Still, I'm managing to maintain weight (after losing 10lbs) by finding some things that are edible still and making good use of protein shakes and high calorie vitamix inventions.

    Foods that are, for no good reason, still edible are: A poached egg with 1 bit of really crisped bacon, ritz crackers with cream cheese and ground beef tacos without the taco....eat just the filling with extra sour cream. Also, ice cream is just about still doable and popsicles too.

    I'm a big fan of red wine but that tastes either awful or sometimes, just bad. Thought I'd try a very small shot of brandy last nite.....that was a mistake! Tasted like paint thinner over ice.

    Been offered as much hydration as I want by the chemo office. (you go in and they hook you up to a drip bag of saline solution) I've been taking advantage of this once a week. Seems to help.

     

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    edited February 2021 #50
    Congrats Kid

    You are progressing and handling this quite well. You are managing to find things you can eat and adding calories where you can. Other people on here have said acholic beverages taste bad anymore and don't like them. There is a fellow in my local support group that makes wine but now gives it all away as it tastes terrible to him. I had gotten the extra hydration at times not sure if it helped or not but it was good to make sure I got enough hydration anyway. Keep at it kid you are doing great and we are here to help if we can-Take Care-God Bless-Russ

  • The Cincinnati Kid
    The Cincinnati Kid Member Posts: 63 Member
    edited February 2021 #51
    closing in on the end of

    closing in on the end of treatment. 6 radiations and 1 chemo left. I'd say its been a much more difficult path than I thought, even with the research I'd done and the advice / experience garnered from here. I have lost 10% of body weight, which, considering I was a skinny guy to start with , is a fair amount. But, It looks like I'll avoid the feeding tube at this late stage. 

    A good friend has lent me his cabin in the Smokies for a few days so after the last treatment and a few days to get over the worst of it, a little R & R in the TN hottub sounds good. Hopefully I wont have any bears to fight off as I sure am a tad weak.

    On the food side, poached eggs and hot dogs (no bun) have remained edible in very small portions. Keep up with the protein shakes and make sure you check the calories....some have a much higher calorie count and thats what you need.  

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited February 2021 #52
    TCK,

    Wow - you're SO CLOSE!!

    I think it's a good idea ... a little cabin time. It will give you some time to take it easy, and reflect...

    It is a little tough for a while. A person in treatment just wants to be DONE - and back to normal. But, it will take you a few weeks.

    Be easy on yourself. Get rest when you need it. It takes a lot out of a person.

    I've read through your previous posts on here. You've been amazing, in that you've shared advice and help to others through the whole process!

    In a little while, you'll be on here telling us how great you feel again!

    Hang in there buddy - not much time before you'll be "ringing the bell" (or whatever your treatment center does to celebrate)!...

    mg

  • The Cincinnati Kid
    The Cincinnati Kid Member Posts: 63 Member
    #53
    Almost done. 3 rads and 1

    Almost done. 3 rads and 1 chemo on Friday left. Today was the first time I had to ask for painkillers as the peppery mouth turned firey. So I got a good liquid morphine waiting for me at the pharmacy. Food intake still very poor but I did find a Nestle Boost protein drink with 530 cals which is keeping me alive for now. I have these occasional cravings for food which I try but they usually turn out to be awful to eat. Today its a baked potato with cheese and sour cream so well see how that rolls. 

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #54
    The Cincinnati Kid said:

    Almost done. 3 rads and 1

    Almost done. 3 rads and 1 chemo on Friday left. Today was the first time I had to ask for painkillers as the peppery mouth turned firey. So I got a good liquid morphine waiting for me at the pharmacy. Food intake still very poor but I did find a Nestle Boost protein drink with 530 cals which is keeping me alive for now. I have these occasional cravings for food which I try but they usually turn out to be awful to eat. Today its a baked potato with cheese and sour cream so well see how that rolls. 

    TCK,

    You're done on FRIDAY!!

    I can still remember how good it felt, to finally be DONE with treatment!

    The radiation continues working on you for a week, after finishing. But after that, it's a process of improvement, just about every day.

    I think it took about 3 months, for me to get taste back. But, looking back - it doesn't seem that long.

    I ate eggs / over easy - DOZENS of them - LOL!

    I'm very happy for you, being this close!!

    mg

  • The Cincinnati Kid
    The Cincinnati Kid Member Posts: 63 Member
    edited March 2021 #55
    thanks mg.....when I'm better

    thanks mg.....when I'm better and eating I'm not sure I'll ever eat a damn poached egg again. Feels like prison food.

  • ERomanO
    ERomanO Member Posts: 323 Member
    edited March 2021 #56
    Cincy Kid, I think you'll eat

    Cincy Kid, I think you'll eat eggs again, but maybe you'll steer clear of protein drinks.  WHo knows?  The manin thing is that in one week (or so) after you finish you'll begin the recovery process and little by little your old self will reemerge... and man will you be thankful!  But even with recovery, be patient.  It may take longer for you than it did for others.  You might experince lymphedema or neuropathy, etc.  But you'll adust to whatever comes your way and get on with life.

  • The Cincinnati Kid
    The Cincinnati Kid Member Posts: 63 Member
    #57
    Well, done but not quite done

    Well, done but not quite done. Yesterday was my last rad treatment and today was the last of 3 chemos but there were complications. Due to the effects of a sore mouth I'm not eating or drinking as I should be. This resulted in weight loss and a low white cell count so chemo guy wasn't too happy. Anyhow, treatment did procede but I have to return Mon AND Tues to get a shot and to be hydrated.  

  • Logan51
    Logan51 Member Posts: 467 Member
    #58
    Congrats

    are in order. I had a FT installed before tx because the Rad&Onco Dr.s knew what their tx would do to my mouth and throat, but especially the mouth. Better days are ahead.

  • The Cincinnati Kid
    The Cincinnati Kid Member Posts: 63 Member
    #59
    Logan51 said:

    Congrats

    are in order. I had a FT installed before tx because the Rad&Onco Dr.s knew what their tx would do to my mouth and throat, but especially the mouth. Better days are ahead.

    Yeah, I had the option on the

    Yeah, I had the option on the FT  but took the recomendation not to as recovery should be quicker without. second guessing myself now. 1 week done with treatments. Very little solid food, living on high cal protein drinks and chocolate milk. Not so easy looking on the positive side each day but thankful for some good friends and family keeping an eye on me. Support very important.

  • The Cincinnati Kid
    The Cincinnati Kid Member Posts: 63 Member
    edited March 2021 #60
    So, about 12 days after my

    So, about 12 days after my final treatment now and I think finally, the corner has been turned.

    Firstly, I feel OK although week mostly due to lack of food.

    The bad burns on the neck are mostly healed and at least no longer painful

    Throat still sore but not as awful as it has been.

    Mouth still very dry, most food still tastes awful BUT there have been some tiny improvements over the last 2-3 days.

    Surviving on a Boost high cal shake, 530 cals, which I divide into 3 and add to a glass of whole chocolate milk. Takes me all day to drink the 3 but it adds up to over 1100 cals of my minimum needed 1500 cals (got this number from the radiation doc)

    In addition to this, a serving of jello has kept me going.

    Finally been able to add small items of food. Havarti cheese, 2 slices a day. Had some leftover beef stew. Trying lots of stuff....usually, its still awful but some things, such a s the cheese, I've been able to eat 4-5 small forkfuls. I know that sounds like nothing but after 5 weeks of zero, I consider it a victory and a start of recovery.

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    edited March 2021 #61
    Great News Kid

    The treatment is wearing off and little bits of recovery can be seen and felt. So glad for you that now these little improvements are showing you the light at the end of the tunnel. It will get better and better. I know eating 4-5 small forkfuls of something sounds like nothing to people outside of cancer recovery but I have been there and many others where we are just thankful we can eat again whatever it is. Wishing you continued best recovery-Take Care-God Bless-Russ

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