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5th Week of Daily Radiation/2nd Chemo/back to Square One?

5th Week of Daily Radiation/2nd Chemo/back to Square One?

Posted by Tiggrrrz on Nov 8, 2019 6:34 am

Well, things were going fairly well for me last week.....week 4 of daily trips to Hamilton for radiation. Food was going down more easily, I was able to eat a full meal, my appetite was back & the Thrush & canker sores from the chemo was subsiding. Things were looking good!
Then, week 5 of radiation & a 2nd round of chemo brought it all crashing down.
I can no longer swallow (yet again) without extreme pain so, I’m relying on my feeding tube almost exclusively. I have an infection in my throat which is causing extreme phlegm and coughing (excruciating) and I believe that’s what’s waking me up constantly. My weight gain seems to have plateaued at 112 lbs and things are again tasting horrid so, my appetite definitely is impaired and my nausea seems to be making the rounds too. I’m getting maybe 2 hrs sleep a night because of the steroids from the chemo & from the throat infection from the radiation. My diabetes is heavily impacted by the steroids as well giving me high glucose counts. Trying to maintain that alone seems like a full time job. I feel like I’m in a boxing ring half the time being pummelled from all sides. No Sugar Ray me!
I also now have radiation burns on my throat & chest which constantly need attention. I laugh at this.....sunburn but, without the benefit of the clime......no tropical beach for me!
As well, the tinnitus in my ears continues and I’ve noticed extreme weakness in my legs....another side effect of the CarboPlatin Chemo drug they switched me to. I was almost stranded when I crouched down in a gift shop.....I could not for the life of me stand up. Being a fairly active & healthy person before all this started it through me for a loop.
I know my sleeplessness is causing me to view all this with helplessness and despair so, I guess this is me whining. I needed to get this out. Out d*** spot, out!
I have to keep my eye on the prize. Next week, 3 days of radiation left AND THEN I’M DONE! All I’ll have left is my chemo for the next 3 months & to me, that seems like a cakewalk. Not sure exactly what a cakewalk looks like but,when it happens I’m going to cakewalk!
So, having said all this, I feel somewhat better. Getting it all out in a post is much better than burdening my friends and family as I always try to present a positive attitude.
Thanks for listening friends.
TïGž
 

Re: 5th Week of Daily Radiation/2nd Chemo/back to Square One?

Posted by Brighty on Nov 8, 2019 7:06 am

Tiggrrrz‍  thank yoy so much for updating us.    You are never a burden.   My fiance  wet through  the exact same thing as you at week 5.   Make sure to tell your oncologist  everything that is goig on with you.   There are procedures that can be done to open up your throat so that food can pass again.   The oncologist  can refer you to a thoratic surgeon who maybe able to help.  My fiance went  through a few different  procedures.  there are options.   I'm sure your family doesn't think you are burdening them.    They  would want to help you .   We are here for you too.    

Re: 5th Week of Daily Radiation/2nd Chemo/back to Square One?

Posted by Treepeo on Nov 8, 2019 7:39 pm

Hi Tiggrrrz‍,

Thank you for sharing your situation with us.  It must be horrible not being able to swallow without extreme pain.  And just when things seemed to be getting better.  Grrrr, it's so disheartening and frustrating.

I can't believe how much radiation you have already had.  No wonder you can't wait for it to be over.  It sounds tortuous.  You are very brave, and strong too.  You go ahead and post as often as you want to.  I am rooting for you.  Hugs.

Re: 5th Week of Daily Radiation/2nd Chemo/back to Square One?

Posted by Kims1961 on Nov 8, 2019 10:39 pm

Tiggrrrz‍ Thank you for the update.  So sorry you are having some difficulties again.  When i felt like i was moving back to square one, a doctor told me to think of a  helix - it moves back and forth - not like a pendulm though - always improving slightly....he was a doctor so his reference was medical but i got his point😉 So even when we feel we are back to the beginning...or worse...we are actually still moving ahead - we now have experience and some knowledge that we didn't have before.

8634c7c94105ce9bb49a4be4907b9fba-huge-la

Cake walk!  I always wondered where that phrase came from...found this!

https://www.npr.org/sections/codeswitch/2013/12/23/256566647/the-extraordinary-story-of-why-a-cakewalk-wasnt-always-easy


Hope your night is going better.

Kim

Re: 5th Week of Daily Radiation/2nd Chemo/back to Square One?

Posted by Tiggrrrz on Nov 8, 2019 11:18 pm

Hey Kims1961‍ .
Not doing much better BUT loved your reply.....gave me incentive to keep at it!
With regards the “cakewalk”......maybe I’ll just do The Sprinkler....lol!
Thanks again for the encouragement.....you guys rock!
TïGž

Re: 5th Week of Daily Radiation/2nd Chemo/back to Square One?

Posted by Cynthia Mac on Nov 9, 2019 9:42 am

Tiggrrrz‍ , I was thinking about your over the last few days, because we hadn’t heard from you, so I’m glad you checked in, even though your update isn’t as positive as I’d hoped.

Still, I see more than a glimmer of determination toward the end, and that is so encouraging.

Cheering you on, and wishing you well!

Re: 5th Week of Daily Radiation/2nd Chemo/back to Square One?

Posted by Tiggrrrz on Nov 11, 2019 9:07 pm

Update at the end of 5 weeks.
Gradually feeling better. Still have the sore throat so I can’t eat regularly but have been taking in additional nutrition through my feeding tube. Realize it’s important to keep gaining weight. Unfortunately I’ve lost a couple of pounds but not worried yet.
The burn on my chest & throat area continues to be extremely sore & tender. It concerns me because I’m not sure it can handle another 3 treatments. Will be talking to my radiology team tomorrow about this.
My pain & discomfort has been greatly relieved with T3’s. Broke down & took some....glad I did as it helped me to sleep better which is what I’ve been missing for about 2 weeks now.
Definitely looking forward to the end of my radiation. Although it was a long haul, filled with many, many ups and downs, it truly showed me what I’m made of. Not tooting my own horn but, the human spirit which, when pressed, can soar to heights otherwise never achieved.
Looking forward to taking my radiation cast home with me. It will serve in a place of honour in my house somewhere, somehow and perhaps, be a useful prop for next Halloween...lol.
And that bell.....will be rung with great joy on my last session!
All in all....the journey has been rough but I know I couldn’t have done it without this website and, more importantly, all the people here providing unequivocal encouragement and life lessons they shared from past experiences. It supported me when I was down....it sailed me past the rough patches where I came out the other side unscathed and put my head on straight when I thought I was at an end. You gave me the courage to say to myself I CAN DO THIS!
So, although not yet at the very end of my therapy, I know next week is going to be hard and I’m prepared for it because if you guys! And I wanted to make sure I said THANK YOU now.
Special thanks to Brighty‍ and Cynthia Mac‍ but also, to everyone else who provided antidotes and shared personal experiences.
Will keep you in the loop. Just wanted to make sure I made this post now.
TïGž

Re: 5th Week of Daily Radiation/2nd Chemo/back to Square One?

Posted by Cynthia Mac on Nov 11, 2019 11:01 pm

Sending the ❤ 💛 💙 💜 💚 right back atcha!

Be fierce! You’re on the home stretch!