Week 5 of 7

RodgerM
RodgerM Member Posts: 63 Member
edited January 2021 in Head and Neck Cancer #1

Week 5 of 7... 

In the middle of week 5, definitely experencing increased symptoms and the need of pain meds. 
swallowing has become more difficult, and i have a mouth sore that is painful when eating or drinking.  The combo of the 2 are making things uncomfortable.  Night time is the worse , due To increased dry mouth.

Today my schedule chemo was canceled due to my CBC numbers sort of tanking. Doc gave me the day off and I got some hydration instead. 
We will see if I get any rebound by next week , or maybe chemo has taken its toll and I am done.  I guess it depends on the numbers.  So I am hoping that maybe my mouth sore will have a chance to heal some, but not counting on it since I still have Radation everyday.  I have bruising like a heroin addict due to all the attempts to get a good vain.   Will start having daily hydrations , due to the severe dehydration even tho I do drink a fair amount of water my body just can't catch up.  i am still
managing to eat solid foods and am starting to work on smoothies , taste has worsened some, but I still have a decent appetit.  I have started  to lose weight I would say about 8 lbs,  but I am still ahead since I gained 10 lbs before we stated.   

Like everyone said, the hardest days are upon me now, and I see why people lose so much weight, the mouth sores just make everthing worse, I've got magic mouthwash but it is still a bit painful I also use muguard to help with eating and dry mouth some.  14 radations to go and the last 10 the field is reduced, but I don't think it will be to helpful since it's the side of my mouth sore pain.    Today was especially difficult due to the numerous pricks and  the mouth sore as well as tanking CBC counts.  I was super emotional and sort of broke down in front of everyone.  It's was one of thoses days.  I've still got some emotions to let go of I can't keep them bottled up forever.  I've just got to try to keep standing back up with theses hits that knock me down. 

Sorry for not sugarcoating it,  everyone is different but in the end It's more the same then not I guess ,  just got to keep up and manage this pain and try to keep up with the nutrition, and take advantage of this chemo down time ..  Tho 14 days still feels long I still look forward to the last day, even tho I know some symptoms will lag at least I'll be done with treatments. Dreaming of a bonfire with a mask burn to liberate me from this journey. Not keeping any souvenirs If you know what I mean.

 


 

Comments

  • PipLily
    PipLily Member Posts: 127 Member
    Towards the end....

    so, just keep on, keeping on. It’s all you can do.  One hour at a time if needed. It will be over soon. My husband had a chemo dose delayed also, due to low counts. He ended up getting several  Neupogen injections to increase his White count. He was really discouraged. But a week later, he was back on track. Take whatever pain meds you need to get through. That’s what they are there for. Use the resources you have.  It’s difficult, but you can do this! 

  • PipLily
    PipLily Member Posts: 127 Member
    edited January 2021 #3
    Also....

    just focus on maximizing your calories with those smoothies. Get AS MANY calories in each one as you can, by adding a quality protein powder, ice cream, fruit, etc. That way you get the most impact in just three or four “meals “. And the Hydration, although a hassle, is very beneficial to get you through to the end. You’ll be having that bonfire before you know it!!!

  • Logan51
    Logan51 Member Posts: 470 Member
    edited January 2021 #4
    home stretch

    You might want to think again about the mask burning, Rodger. Back in the old days (2009) the majority of folks kept theirs to remember what they had been thru. I left mine in the back seat of my car by accident one summer day in 2009 and part of my skull mask melted, but still kept. Did toss it when I moved in 2019, but still have the FT I carried for 17 months.

    I was too sick for Rads in week #5 and started #6 in the Hospital for 4 nights, so you're doing okay. My full dose of Chemo was delivered different than anyone else's, so I don't know about the CBC. All they ever told me was my Magneseum was running low. Think most of us deal with the hydration issue, which might be part of the reason I got so sick- many days I was doing good to get 12 ozs. of Jevity into my FT, and my water intake was mostly the Godsent ice cubes. Only time I got emotional was at start of 2nd week when I could barely talk: on the way back to get Rads I grabbed the arm of the one Rad gal and took her into an empty room, slammed the side of my fist on the counter and demanded she get the Rad Dr. She started talking, so I slammed my fist again and pointed a finger at her and ordered her to, which she did. And the Dr. convinced me that the voice thing was to be expected and temporary, so that was that, and away I went to get zapped again in 20 places. Course, I was only 55 then, and had been thru a lot due to a car accident when I was 13, so I don't let things get to me. Probably a good thing to vent and let your emotions show, though, if it helps you. 

    As we used to say, at your point of tx you should be looking for a trace of light that's at the end of the tx tunnel/experience and be anxiously waiting for that light to get brighter, because the end of the last day of Rads is one very beautiful day. C has only one thing in mind on what it wants to do to you, and you'll have gone thru the very tough fight to get the C knocked-out and carted away. Hope it will be as beautiful a day for you as it was for me.

  • ERomanO
    ERomanO Member Posts: 323 Member
    Hang in there!

    As Logan51 said, look for that light at the end of the tunnel.  In my experience the 5th day post treatment was the worst day/night ever, then the sun came out the next morning and and I could already tell I was on the other side.  At that point even though the side effects were still present, I could tell they were diminishing and that was the best feelong ever.  Just keep focusing on that pinpoint of light.  It too will turn into a bright shiny day.

  • ERomanO
    ERomanO Member Posts: 323 Member
    Oops!  I double posted.

    So I'll edit this one to say that I left my mask at the hospital for them to dispose of, and I threw away the bottle I used as a spitoon whenever in the car.  I wanted nothing to do with those reminders.

  • wbcgaruss
    wbcgaruss Member Posts: 2,474 Member
    edited January 2021 #7
    I'm With ERomanO & Logan 51

    Just hang in there and this will one day be a distant memory. I know it is for me and I am glad. It is a difficult time but you will get through this even though it is rough now take it day by day and hour by hour if need be. So many on here are proof of recovery. As far as the mask I read where one person gave it to their daughter and she decorated it and eventually sold it on eBay for a tidy sum. I don't know how well they sell as I brought mine home and the more I looked at it was a reminder I didn't need and cut it up and put it in the trash. I had a second set of rads in Jan.-Feb. of 2020 and you can be sure I told the girls you can keep the mask here and do what you like with it. Like Mr. Romano I am glad and blessed by the saving treatments and thankful I got through the recovery but reminders of that time I don't need. Best wishes-Take care-God Bless-Russ

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited January 2021 #8
    Rodger,

    Week 5 until a week or two after treatment are the worst, for sure...

    I left my mask, as i pictured it laying in my garage for 10 years, and finally getting thrown out...

    I do recall that my chemo was delayed a week at one point, due to low Blood Count numbers. The doctor gave me some sort of shot, to boost the numbers, and it worked. I was back on chemo track, the following week.

    I'm sure people get tired of me saying it - but a couple weeks out of treatment, you slowly start getting better. In some ways, I'm back to better than normal. I'm 25 pounds lighter, now -than when I started this whole process - and it's been relatively easy to keep the weight off!

    I feel for you, as you're in the middle of the fight - but I know you'll get through it ... and feel normal again.

    Hang in there!!

    mg

  • RodgerM
    RodgerM Member Posts: 63 Member
    PipLily said:

    Towards the end....

    so, just keep on, keeping on. It’s all you can do.  One hour at a time if needed. It will be over soon. My husband had a chemo dose delayed also, due to low counts. He ended up getting several  Neupogen injections to increase his White count. He was really discouraged. But a week later, he was back on track. Take whatever pain meds you need to get through. That’s what they are there for. Use the resources you have.  It’s difficult, but you can do this! 

    Thank you , our Similarity

    Thank you , our Similarity are so close. Yes I have no choice and will take all your advise .  Yesterday was a hard day to say the least, but now I am happy I didn't get chemo .  Doc hasn't mention anything to promote white counts but I'll bring it up! 

    thanks again so helpful you've been.  ??

  • RodgerM
    RodgerM Member Posts: 63 Member
    edited January 2021 #10
    PipLily said:

    Also....

    just focus on maximizing your calories with those smoothies. Get AS MANY calories in each one as you can, by adding a quality protein powder, ice cream, fruit, etc. That way you get the most impact in just three or four “meals “. And the Hydration, although a hassle, is very beneficial to get you through to the end. You’ll be having that bonfire before you know it!!!

    Doing it! Hydration is

    Doing it! Hydration is helping , I feel a little better tonight , afraid to think ? it ..  managing the meds better too.

    thanks again

  • RodgerM
    RodgerM Member Posts: 63 Member
    edited January 2021 #11
    Logan51 said:

    home stretch

    You might want to think again about the mask burning, Rodger. Back in the old days (2009) the majority of folks kept theirs to remember what they had been thru. I left mine in the back seat of my car by accident one summer day in 2009 and part of my skull mask melted, but still kept. Did toss it when I moved in 2019, but still have the FT I carried for 17 months.

    I was too sick for Rads in week #5 and started #6 in the Hospital for 4 nights, so you're doing okay. My full dose of Chemo was delivered different than anyone else's, so I don't know about the CBC. All they ever told me was my Magneseum was running low. Think most of us deal with the hydration issue, which might be part of the reason I got so sick- many days I was doing good to get 12 ozs. of Jevity into my FT, and my water intake was mostly the Godsent ice cubes. Only time I got emotional was at start of 2nd week when I could barely talk: on the way back to get Rads I grabbed the arm of the one Rad gal and took her into an empty room, slammed the side of my fist on the counter and demanded she get the Rad Dr. She started talking, so I slammed my fist again and pointed a finger at her and ordered her to, which she did. And the Dr. convinced me that the voice thing was to be expected and temporary, so that was that, and away I went to get zapped again in 20 places. Course, I was only 55 then, and had been thru a lot due to a car accident when I was 13, so I don't let things get to me. Probably a good thing to vent and let your emotions show, though, if it helps you. 

    As we used to say, at your point of tx you should be looking for a trace of light that's at the end of the tx tunnel/experience and be anxiously waiting for that light to get brighter, because the end of the last day of Rads is one very beautiful day. C has only one thing in mind on what it wants to do to you, and you'll have gone thru the very tough fight to get the C knocked-out and carted away. Hope it will be as beautiful a day for you as it was for me.

    Oh it's burning my brother.  

    Oh it's burning my brother.   I will see fire ? coming out of all thoses holes, I want no part of this memory , other then the personal growth Ive had from it. i will tick it far away in that space in my head that protects me from bad memories.   It's how I survive ,  you know the saying sweep it under the carpet .  Thanks for the encouragement and I sort of comforted that chemo take it toll on all of us . It was one tough day , I couldn't get a hold of things , I could see the end , I was stuck in the moment of petty.  But like you all keep telling me the show My go on.  I am slightly encouraged that it will be Friday and then only 2 weeks to go.  
    tho there are the hardest I am all in !

    thanks again! 

     

  • RodgerM
    RodgerM Member Posts: 63 Member
    ERomanO said:

    Hang in there!

    As Logan51 said, look for that light at the end of the tunnel.  In my experience the 5th day post treatment was the worst day/night ever, then the sun came out the next morning and and I could already tell I was on the other side.  At that point even though the side effects were still present, I could tell they were diminishing and that was the best feelong ever.  Just keep focusing on that pinpoint of light.  It too will turn into a bright shiny day.

    I am tying too.. ??  Thanks

    I am tying too.. ??  Thanks again! 

  • RodgerM
    RodgerM Member Posts: 63 Member
    edited January 2021 #13
    ERomanO said:

    Oops!  I double posted.

    So I'll edit this one to say that I left my mask at the hospital for them to dispose of, and I threw away the bottle I used as a spitoon whenever in the car.  I wanted nothing to do with those reminders.

    EXACATLY !  It's burn and it

    EXACATLY !  It's burn and it will be a celabration ill share with my family and friends ..  this is what's driving me at this point since the week after will pribably be the hardest. 

    thank you again! 

  • RodgerM
    RodgerM Member Posts: 63 Member
    edited January 2021 #14
    wbcgaruss said:

    I'm With ERomanO & Logan 51

    Just hang in there and this will one day be a distant memory. I know it is for me and I am glad. It is a difficult time but you will get through this even though it is rough now take it day by day and hour by hour if need be. So many on here are proof of recovery. As far as the mask I read where one person gave it to their daughter and she decorated it and eventually sold it on eBay for a tidy sum. I don't know how well they sell as I brought mine home and the more I looked at it was a reminder I didn't need and cut it up and put it in the trash. I had a second set of rads in Jan.-Feb. of 2020 and you can be sure I told the girls you can keep the mask here and do what you like with it. Like Mr. Romano I am glad and blessed by the saving treatments and thankful I got through the recovery but reminders of that time I don't need. Best wishes-Take care-God Bless-Russ

    one day at a time, I'll get

    one day at a time, I'll get thru this.  Its a comfort to have you guys with me , tho I don't like the sound of a second round of rads..

    Its a bonfire ? mask ? burning .. rhsbks again! ??

  • RodgerM
    RodgerM Member Posts: 63 Member

    Rodger,

    Week 5 until a week or two after treatment are the worst, for sure...

    I left my mask, as i pictured it laying in my garage for 10 years, and finally getting thrown out...

    I do recall that my chemo was delayed a week at one point, due to low Blood Count numbers. The doctor gave me some sort of shot, to boost the numbers, and it worked. I was back on chemo track, the following week.

    I'm sure people get tired of me saying it - but a couple weeks out of treatment, you slowly start getting better. In some ways, I'm back to better than normal. I'm 25 pounds lighter, now -than when I started this whole process - and it's been relatively easy to keep the weight off!

    I feel for you, as you're in the middle of the fight - but I know you'll get through it ... and feel normal again.

    Hang in there!!

    mg

    I'll go into it Friday with

    I'll go into it Friday with some good encourament behind me , thank you. Feels good that I am not alone in this there is no one else that gets it.  I need this encouragement to get me thru.. 

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited January 2021 #16
    RodgerM said:

    I'll go into it Friday with

    I'll go into it Friday with some good encourament behind me , thank you. Feels good that I am not alone in this there is no one else that gets it.  I need this encouragement to get me thru.. 

    Rodger,

    It's easy to get impatient, and want desperately to get back to a normal state.

    Try to take it easy on yourself, ask your Oncologist ALL of the questions you have (especially if you need relief from something), get plenty of rest. I feel most people greatly underestimate how much energy the healing process takes!

    You're right in the middle of the battle, and all of us on this thread are behind you!

    I look forward to hearing stories about you eating pizza (with beer, if that's your beverage of choice). It will be happening sooner than you can believe ... at this point!

    Hang tough,

    mg

  • joe m
    joe m Member Posts: 8
    mouth sore

    Iam starting treatment soon but wanted to say that i agree for a new study for a drug for mouth sores which will help other future cancer patients and i was wondering why they didn't put in a med port for the chemo so they didn't have to stick you with a needle all the time

  • Remington25
    Remington25 Member Posts: 93 Member
    Mouth Sores

    I experienced the mouth sores and it was awful.  My doc prescribed a steriod and antibiotic that really helped with that.  The steroid made me breakout all over my chest and shoulders but it helped with the sores on my tongue and in my mouth so I was ok with that.  Maybe look into that?  Also, during my hardest time, the docs prescribed me a very lose dose fentanyl patch and it also helped.  I still felt the pain, but it seemed to put my mind at ease just a bit....  I never felt loopy but it certainly helped me get over the mental aspect of pain while swallowing.