Week Two - Through

Hi everyone, Shirley here reporting for the end of week two. First of all I think I might be a super wimp. It has only been 2 weeks and i am suffering from mouth sores,super dry mouth, my throat feels like it's closing and i can barely breathe. My mucus is like rubber (gross) . I just asked today for the magic mouthwash. I'll try ittomorrow. What makes me so afraid is if this is how I'm feeling after 2 weeks,  how in the heck will i make it through the rest.  I've been reading all your posts who are along treatment with me. So far that's what is keeping me going. Thanks.

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    edited July 2016 #2
    Hi Shirley

     

    Everyone of us are different in how we respond to treatment, there has been others just like you who had the same problems early during treatment. Talk to your doctor and nurses and let them know how you are doing and what you are feeling. If you are having problems swallowing you may need a PEG tube. Also find something that you can focus on that is positive and keep your eyes set on reaching it, it will help make the others weeks go by faster. We are all wimps and you are just another one of us. I like to pray and if you don’t mind I will keep you in prayer.

     

    Tim

     

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited July 2016 #3
    stay in the game

    Gypsy28,

    Super Shirley, I like better.

    It is tough, but you can do better.  Just take your meds, get your nutrition, drink water, cough, hack & spit, whatever you have to do.  I once had to throw my hands up and stop rads so I could get up, hack, spit, cough, get a drink of water, rub my arms and face and get back in the zone.

    For me magic mouth wash was wonderful, it takes  a bit to get use to it, but I ended up going through 6 bottles and I swished and swallowed every drop.  I would even take a hit in the parking lot of rads.

    I never liked rads, but came to find it interesting.  I also took 1 Lorazepam 30 minutes before zap time.

    You can do it, this treatment plan works pretty good and you will feel better.

    Take a deep breath and relax.  You will make it!

    Matt

  • Barbaraek
    Barbaraek Member Posts: 626
    edited July 2016 #4
    Hang in there Shirley

    We are with you gir! The mucositis hit my husband hard early also. And he had thrush by week two. Keep in touch with your team and let them help you over some rough spots with strategies and medications when indicated. No one's journey is the same so don't feel like a wimp. You're going to keep putting one foot in front of the other and knock off week 3, then week 4, etc. and you'll be amazed at what you managed to do. Prayers for strength for you!

    Barbara

  • Gypsy28
    Gypsy28 Member Posts: 69
    Thanks

    Thank you all for your words. I hope I can come out the other side of treatment and help others as you do.

  • RottiesMom
    RottiesMom Member Posts: 167
    You are not a whimp!

    Shirley...you are not a whimp!!  I just started week 2!  My mouth and throat are dry and at times I have trouble swallowing, feel a couple of dry patches on my gums, my voice is horse, the necrotic lymph node that I can see is getting bigger and the right side of my neck is starting to hurt!  You are not alone.  Hang in there!!

    Joanne

  • Gypsy28
    Gypsy28 Member Posts: 69

    You are not a whimp!

    Shirley...you are not a whimp!!  I just started week 2!  My mouth and throat are dry and at times I have trouble swallowing, feel a couple of dry patches on my gums, my voice is horse, the necrotic lymph node that I can see is getting bigger and the right side of my neck is starting to hurt!  You are not alone.  Hang in there!!

    Joanne

    Thanks JoAnne

    It's good to feel that you're not alone however I wish none of us had to do this. 

  • LiseA
    LiseA Member Posts: 266
    edited July 2016 #8
    I wish you well. Fear will

    I wish you well. Fear will make it worse. I went through some fear wondering how much worse it would get, and that left me miserable, so every day I tried to focus on the here and now. lots of distractions. Every day for treatment I chat with people waiting, or the staff, to the point that we now plan to meet for appts to while the time away. And in that time, I don't even feel most of my symptoms. I am day one of week 6. This is supoosed to be the tough week and the previous one, but the reality is that I'm still standing, and I'm still chugging water, coconut water, soy milk, smoothie, and trying to continue with soft solids.  And I'm holding on to that as a gauge that I'm going to make this standing!!!  Hope this helps. Take care of yourself, and rest a lot. 

  • MrsBD
    MrsBD Member Posts: 617 Member
    You are not a wimp!

    Shirley, Joanne, and Lisa- It's been 21 months since my treatment ended and I just want you to know you have support here. You can make it! I kept a journal starting on the day the biopsy was done when they said it was cancer. Last week, I looked at those early entries again. The first days were filled with fear and hopelessness. Stage 4! Was it even survivable? As the days ticked by, between the mouth sores and raw throat after two weeks of radiation, and the lovely, itchy Erbitux rash,  I felt quite miserable. Today it is hard to remember those days and I'm happily back to teaching again. We will be here with advice and prayers, celebrate your last day of treatment with you and help you stay patient as your body heals afterward. You have a whole life ahead!

  • Gypsy28
    Gypsy28 Member Posts: 69
    LiseA said:

    I wish you well. Fear will

    I wish you well. Fear will make it worse. I went through some fear wondering how much worse it would get, and that left me miserable, so every day I tried to focus on the here and now. lots of distractions. Every day for treatment I chat with people waiting, or the staff, to the point that we now plan to meet for appts to while the time away. And in that time, I don't even feel most of my symptoms. I am day one of week 6. This is supoosed to be the tough week and the previous one, but the reality is that I'm still standing, and I'm still chugging water, coconut water, soy milk, smoothie, and trying to continue with soft solids.  And I'm holding on to that as a gauge that I'm going to make this standing!!!  Hope this helps. Take care of yourself, and rest a lot. 

    It does help

    Thanks Lisa, I think you're very brave. Thanks for your encouragement. 

  • Gypsy28
    Gypsy28 Member Posts: 69
    edited July 2016 #11
    Thank you

    Thank you for your support. I really appreciate you all and this site.

     

  • RottiesMom
    RottiesMom Member Posts: 167
    MrsBD said:

    You are not a wimp!

    Shirley, Joanne, and Lisa- It's been 21 months since my treatment ended and I just want you to know you have support here. You can make it! I kept a journal starting on the day the biopsy was done when they said it was cancer. Last week, I looked at those early entries again. The first days were filled with fear and hopelessness. Stage 4! Was it even survivable? As the days ticked by, between the mouth sores and raw throat after two weeks of radiation, and the lovely, itchy Erbitux rash,  I felt quite miserable. Today it is hard to remember those days and I'm happily back to teaching again. We will be here with advice and prayers, celebrate your last day of treatment with you and help you stay patient as your body heals afterward. You have a whole life ahead!

    Thank you...

    Thank you for the encouragement!

    Joanne

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited July 2016 #13
    There is no such thing as a wimp here...

    ...my Oncologist told me that the only cancer he treats that is harder on a patient than HNC is bone marrow cancer.  Just stay in today, and don't worry about tomorrow or next week.  Never feel that you can't ask your Drs. for something specific....if you want Magic Mouthwash...tell them....If you need something for mouth sores, tell them.  

  • SusanUES
    SusanUES Member Posts: 125
    Who's a wimp...not YOU!!

    No such thing...just being in the ring with the Cancer Demon qualifies you as Rocky Balboa. Tell your team everything you are feeling...that's why they are in your corner. Come here and yell. And you may well be some one who does better mid or even late treatment than early on. I'm giving you a virtual toweling off and a big bear hug !

  • Josephwc
    Josephwc Member Posts: 69
    edited July 2016 #15
    By the end of week two I was a super wimp

    I am a teacher so talking all day long is pretty much a given. I remember the end of week two and it wasn't pleasant. The pain was too much and I felt like crap. I read some of the posts and felt everyone was doing so much better than me. Im sure I wasn't so cheerful to be around but I did it. MY weekends were definitely enjoyed and Mondays were frowned on but it did eventually ease up after the treatments were over. 

     

    I hate to share but as I neared those last few days things did turn worse for me. The most important thing for you is to drink drink drink room temperature or chilled water. Also eat as much and often as you can. You will get through this! I'm sure it feels so depressing but things do work out. 

     

    I am cheering for you and I know we will be reading more positive experiences soon. 

     

    Everything changes as you move through this. Old pains are replaced with new problems and we learn to deal with it. The mucosis gets bad but that too passes.  It is all a process that can seem to creep along at times but it does move. This is week five post radiation and I'm still dealing with pains and frustration but it's nothing compared to what it was. 

     

    I do wish I could help more. Eat, drink, take your meds and sleep on an incline. 

    Good luck and heal fast! 

  • Fritz
    Fritz Member Posts: 106
    Hang in there!!

    As all have said above me, this is not a time to fret. It will only make things worse if you fall into the negativity trap. I have only 6 more of 33 total left on my schedule and am nearing the end of this horrific journey. No one volunteered for this but we all are learning to deal with its stages. I too have had a mucous problem from about week 2 on. Mine has been so bad that I cannot get any real solids down and by end of week 3 was liquid only as it was no longer worth the battle for solids. I have pushed along this way and accepted what I could and could not do. At this stage, I still have a net gain in weight of 1 pound without a PEG. Not to say I will still finish with net weight gain with a week still to go, but it can be done even without solids if you keep positivity on your side.

    As you said this site is a tremendous benefit as it has helped me through this journey. Use all you can from here and that is the best advice anyone can give you.

    Hang in there and you too will make it through and being telling us how well you are doing as the end of treatments near.

    Freddie

  • LiseA
    LiseA Member Posts: 266
    O

    You can do it!!  I have 3 treatments to go in two days (monday 11th & Tuesday 12th) and then I am DONE!! I cannot believe it.  Seemed like forever that I was doing this and finally I see the end smack dab in my face. I am eating less portions wise, but still eating solids. It's harder to chew and swallow but I am doing it. 2 scrambled eggs take half an hour to eat, but that's okay. I upped my smoothies to twice a day.  I can't taste much except for cucumbers right now, and i love them. They don't hurt my mouth so much. I also eat tapioca pudding (made at home) so I'm using soy milk to up the protein in it and calls for an egg as well. I'm finding ways to sneak the protein in. I eat lots of avocados. There is no taste but it's soft and has good fats. I don't focus on food taste.

    Right now it's all about highest form of nutrition. I shut down the part of brain that wants food to be normal.

    Ain't nobody got time for that!  It's all about getting your protein and good calories in.  This far, and not boasting, but half my tongue is raw and my gums hurt, and sores everywhere and I refuse to let it stop me from eating.  No feeding tube for me. I said it from day one. I know it's HARD!  It's a mofo of journey to take, but it's temporary.  I'm almost there. I have a host of auto immune diseases as well to contend with and I'm willing this body to handle the big C and come out roaring. We can do this. Day at a time.  We know it's hard. Hugs, prayers and here to help. Celebrate with me next Tuesday :-)

     

  • stevenpepe
    stevenpepe Member Posts: 234
    LiseA said:

    O

    You can do it!!  I have 3 treatments to go in two days (monday 11th & Tuesday 12th) and then I am DONE!! I cannot believe it.  Seemed like forever that I was doing this and finally I see the end smack dab in my face. I am eating less portions wise, but still eating solids. It's harder to chew and swallow but I am doing it. 2 scrambled eggs take half an hour to eat, but that's okay. I upped my smoothies to twice a day.  I can't taste much except for cucumbers right now, and i love them. They don't hurt my mouth so much. I also eat tapioca pudding (made at home) so I'm using soy milk to up the protein in it and calls for an egg as well. I'm finding ways to sneak the protein in. I eat lots of avocados. There is no taste but it's soft and has good fats. I don't focus on food taste.

    Right now it's all about highest form of nutrition. I shut down the part of brain that wants food to be normal.

    Ain't nobody got time for that!  It's all about getting your protein and good calories in.  This far, and not boasting, but half my tongue is raw and my gums hurt, and sores everywhere and I refuse to let it stop me from eating.  No feeding tube for me. I said it from day one. I know it's HARD!  It's a mofo of journey to take, but it's temporary.  I'm almost there. I have a host of auto immune diseases as well to contend with and I'm willing this body to handle the big C and come out roaring. We can do this. Day at a time.  We know it's hard. Hugs, prayers and here to help. Celebrate with me next Tuesday :-)

     

    Wow! Still eating solids? I

    Wow! Still eating solids? I thought I was doing well after 4 weeks. Are you adding protein powder to your shakes? I found eating solids became such a chore, I simply didn't want the struggle. If you get there yourself, you have many options to get your nutrients in liquid form. I'm still maintaining my weight on just 2 large shakes a day. I'm proud of your progress.

  • LiseA
    LiseA Member Posts: 266
    Thanks, Steven. I'm using

    Thanks, Steven. I'm using whey protein isolate for the extra boost.  I'm dealing with ulcerative colitis as well so I've had to be very careful about eating and having enough protein and calories to battle both.