Countdown

I'm preparing for my treatments.  They begin Wednesday for the next seven weeks.  Radiation and weekly cisplatan.  

So far I have:

Anti-nausea med Prochlorper (?)

Comfy loose clothes

Lorazepam for comfortable mask time

Spray bottle (Thanks Estelle!)

Cases of Ensure Complete

Sign on kitchen wall stating "EAT TO LIVE"

Eucalyptus leaves for the shower

A helper to wash sheets/towels and clothes plus hold the sign in front of me that states "EAT TO LIVE"

So I am worried about showering and sleeping.  How painful is the shower going to be on my burnt skin?  Maybe I'll bathe instead in tub.  How will I sleep with burnt skin?  Is there a special wrap I should use on my neck?  Will I sleep sitting up?  And my arms are fragile, they bruise terribly when I'm poked.  Lot's of pokes coming up, there will be no port for chemo so will ice on my veins prior to this help?  

Aaahhhh, yes I'm type A.....need it all planned out.  lol

As usual, I value all of you opinions!

Michelle

Not sure why my new pic is sideways....?

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Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    got a recliner and some rad music?

    Shell,

    H&N 101, be prepared!

    Usually the first 3 weeks are easier that the last 4 weeks.  First off take anti-nausea meds for chemo  before you feel sick and start drinking water and swallowing often.

    Not everyone gets neck burn (I did).  There are things to do if it happens.  It usually happens around week 6 or 7.

    Matt

  • Shell_7801
    Shell_7801 Member Posts: 71
    CivilMatt said:

    got a recliner and some rad music?

    Shell,

    H&N 101, be prepared!

    Usually the first 3 weeks are easier that the last 4 weeks.  First off take anti-nausea meds for chemo  before you feel sick and start drinking water and swallowing often.

    Not everyone gets neck burn (I did).  There are things to do if it happens.  It usually happens around week 6 or 7.

    Matt

    Recliner: check

    Music: check

    I'm glad to hear the worst may not occur until a few weeks in.  That new grandbaby is coming any day so I have things to do!!

     

    Thanks Matt

  • Laralyn
    Laralyn Member Posts: 532

    Recliner: check

    Music: check

    I'm glad to hear the worst may not occur until a few weeks in.  That new grandbaby is coming any day so I have things to do!!

     

    Thanks Matt

    I used the cream they gave me

    I used the cream they gave me at the hospital (Medline) every day after radiation without fail, and I had minimal burning despite having super fair skin. You can also use pure aloe gel (just make sure it doesn't have alcohol). 

    I had trouble sleeping during the time I was being treated. I think it was mostly from anxiety, I suspect. I found earplugs help and I also found relaxation tapes a big help (although not at the same time, obviously). The Andrew Johnson ones were especially great. They taught me to relax at will, which helped during radiation and also when trying to sleep. 

    Hope it helps!

  • wmc
    wmc Member Posts: 1,804
    Something you forgot.............

    I bet no one even sugested this....Ready?

    A one million watt STUNGUN for the first person that Pisses you off. Hay just a thought...LOL

    You will do great.

    Bill

     

  • Shell_7801
    Shell_7801 Member Posts: 71
    wmc said:

    Something you forgot.............

    I bet no one even sugested this....Ready?

    A one million watt STUNGUN for the first person that Pisses you off. Hay just a thought...LOL

    You will do great.

    Bill

     

    Too Funny

    Oh Bill you crack me up!

    You know I sometimes put challenging posts up on facebook because I love a good debate.  Since my diagnosis everyone tip toes around me now.  It sucks!!  It's like I can say anything and nobody disagree's or gets upset if I'm schnarcky.....Maybe the stungun will help with that!

    Michelle

    Relaxation tapes (like the ones at a spa)...check

    Stool softner, almost forgot....check

  • phrannie51
    phrannie51 Member Posts: 4,716
    Sounds to me like you're

    pretty darn prepared.....just remember that you don't start treatment one day, and have all the side effects the next.  It's very gradual, especially the first 2 1/2 to 3 weeks....so you only deal with something a little new every couple of days.  I remember the day my taste buds kicked out....water tasted fine when I got up....by 11:00 am, things were tasting salty.  Within two days I was used to it...weird how fast we can adjust. 

    Showering felt good to my neck.....showering felt good period :).  My neck didn't get crusty till about the 5th week, and the rad machine broke down....I ended up with 5 days off of radiation, and my neck healed up enough to keep on going.  My skin didn't get all that bad really, at all.  Used no wraps, and tho I bought 2 huge things of Aquafor, I ended up using Calendula cream (per Rad doc), and Aloe 99 together after radiation everyday.  I did spend some nights in my recliner, but that was after rads were over, and I was getting adjuvant chemo.....I could lean on my fist to keep my mouth closed when I breathed. 

    Ice may help your veins after you've been poked....but the days you have chemo, get warm and stay warm....warm veins stand up better (I watched the Oncology nurses use hot packs on people to get those veins up where they could see them).  Those nurses in Oncology are champions at finding veins and doing little damage.  This is a place where practice obviously led to perfect! LOL. 

    Eat, eat, eat!!!  Especially now while food still tastes good.....drink drink drink....and triple that on chemo days to flush it out of your system. 

    We're always here....

  • Guzzle
    Guzzle Member Posts: 710

    Sounds to me like you're

    pretty darn prepared.....just remember that you don't start treatment one day, and have all the side effects the next.  It's very gradual, especially the first 2 1/2 to 3 weeks....so you only deal with something a little new every couple of days.  I remember the day my taste buds kicked out....water tasted fine when I got up....by 11:00 am, things were tasting salty.  Within two days I was used to it...weird how fast we can adjust. 

    Showering felt good to my neck.....showering felt good period :).  My neck didn't get crusty till about the 5th week, and the rad machine broke down....I ended up with 5 days off of radiation, and my neck healed up enough to keep on going.  My skin didn't get all that bad really, at all.  Used no wraps, and tho I bought 2 huge things of Aquafor, I ended up using Calendula cream (per Rad doc), and Aloe 99 together after radiation everyday.  I did spend some nights in my recliner, but that was after rads were over, and I was getting adjuvant chemo.....I could lean on my fist to keep my mouth closed when I breathed. 

    Ice may help your veins after you've been poked....but the days you have chemo, get warm and stay warm....warm veins stand up better (I watched the Oncology nurses use hot packs on people to get those veins up where they could see them).  Those nurses in Oncology are champions at finding veins and doing little damage.  This is a place where practice obviously led to perfect! LOL. 

    Eat, eat, eat!!!  Especially now while food still tastes good.....drink drink drink....and triple that on chemo days to flush it out of your system. 

    We're always here....

    Shell, reading/music/videos etc. Transport.Be careful using own meds and how they match with those you are given.Good Luck mate.

  • Shell_7801
    Shell_7801 Member Posts: 71

    Sounds to me like you're

    pretty darn prepared.....just remember that you don't start treatment one day, and have all the side effects the next.  It's very gradual, especially the first 2 1/2 to 3 weeks....so you only deal with something a little new every couple of days.  I remember the day my taste buds kicked out....water tasted fine when I got up....by 11:00 am, things were tasting salty.  Within two days I was used to it...weird how fast we can adjust. 

    Showering felt good to my neck.....showering felt good period :).  My neck didn't get crusty till about the 5th week, and the rad machine broke down....I ended up with 5 days off of radiation, and my neck healed up enough to keep on going.  My skin didn't get all that bad really, at all.  Used no wraps, and tho I bought 2 huge things of Aquafor, I ended up using Calendula cream (per Rad doc), and Aloe 99 together after radiation everyday.  I did spend some nights in my recliner, but that was after rads were over, and I was getting adjuvant chemo.....I could lean on my fist to keep my mouth closed when I breathed. 

    Ice may help your veins after you've been poked....but the days you have chemo, get warm and stay warm....warm veins stand up better (I watched the Oncology nurses use hot packs on people to get those veins up where they could see them).  Those nurses in Oncology are champions at finding veins and doing little damage.  This is a place where practice obviously led to perfect! LOL. 

    Eat, eat, eat!!!  Especially now while food still tastes good.....drink drink drink....and triple that on chemo days to flush it out of your system. 

    We're always here....

    P

    You said "I could lean on my fist to keep my mouth closed when I breathed"......what do you mean?  I know since my surgery I wake up at 3am with my mouth covered in "crusties" so thick I can peel them in chunks because I'm so dry but I think my mouth stays closed.

    I still cannot taste very well since neck dissection.  I can swallow better.  I'm afraid that may be a sense that takes a long time to return, if ever.  I'm okay with that.  I'm okay with the scar.  My arm still won't raise above my shoulder and hurts, I'm okay with that.  Funny how much we are okay with to stay alive.  

    Again, you are all such life savers for me.  I really don't think I'd be prepared at all for any of this if it were not for each of you.   

    Michelle

  • granmudder
    granmudder Member Posts: 41 Member
    good luck!!

    As most have mentioned it usually takes time before the skin gets to bad .. Tony used Aveeno was and moistuizer as reccomended by doc. when skin did get a little nasty they prescribed flamazine .. he only need to use that for a week or so they also reccomended salt water wraps ( these did not work for him dried out more)... He is a redhead and skin is quite sensitive but by being dliigent with the Aveeno  i think it helped immensly now 7 weeks after treatment and his skin is normal :) As for anti nausia meds the drs prescribed all of those.

    reccomendation on the ensure make sure its ice cold  ( my hubby didnt like it at all ) i had to create his own high protein High fat shakes....

    Ask questions ... try keeping a diary if you have someone who is going to be going through this with you you might ask them to keep a diary of questions to ask and thoughts.. I did this and it helped tons:)

    Chemo was the tough one for my hubby he had 3 cysplaitons stayed over night for those I stayed with him.. the first one the dosage was obviously too high he had a rough time for 7-8 days after.. they adjusted the 2nd and 3rd ... .. everyone is different though...

    He also had vein issues they put warm towels around his arm for half hour before giving him IV

    hydrate... hydrate hydrate !!!!!! as much as possible carry a water bottle with you everywhere!! i couldnt get him to do this and it caused issues..he hydrates now though!!

    stay strong ! Keep smiling.. you got those grandbabies to keep you going I know ours was a blessing when we were able to see her:)

    one day at a time..xo

  • donfoo
    donfoo Member Posts: 1,771 Member
    A for effort

    Micelle,

    As most commented side effects during rads show up after a couple weeks and accumulate onward; the first two weeks is generally a free pass. Then hit "the wall" when side effects show up. Remember, we are all on a unique journey with unique experiences and side effects. Some are common but vary in effect, some we never get, some get different combinations, and so on. You are well informed and prepared, have CSN as a great resource and companion, and are aware of what to expect. 

    The weekly chemo is much more tolerable and in my case there was zero side effects I could identify. The rad treatment is very quick, much less time than getting the mask made. 

    You're ready to go so relax as much as you can and not overthink and plan for things you can not know.

    Good luck

  • Guzzle
    Guzzle Member Posts: 710
    donfoo said:

    A for effort

    Micelle,

    As most commented side effects during rads show up after a couple weeks and accumulate onward; the first two weeks is generally a free pass. Then hit "the wall" when side effects show up. Remember, we are all on a unique journey with unique experiences and side effects. Some are common but vary in effect, some we never get, some get different combinations, and so on. You are well informed and prepared, have CSN as a great resource and companion, and are aware of what to expect. 

    The weekly chemo is much more tolerable and in my case there was zero side effects I could identify. The rad treatment is very quick, much less time than getting the mask made. 

    You're ready to go so relax as much as you can and not overthink and plan for things you can not know.

    Good luck

    physiotherapy

    Start fizz (pt in American English?) on that shoulder NOW!

  • jackflash22
    jackflash22 Member Posts: 524 Member
    Neck

    I had 30 radiations on my neck both sides but had very little burning, it didn't bother me too much. I did use cream between each radiation but not on the day of the radiation until I got home. I was given by the doc some soothing cream for the small burns I got but it was no worse than sunburn. I don't think everyone gets bad burns. I put bio oil on my neck once the burns had healed and my skin Is soft to touch on my neck. I have got issues with side effects later with scar tissue inside my throat and now have a throat blockage but that's quite rare most people regain their   eating abilities after. 

  • Shell_7801
    Shell_7801 Member Posts: 71
    Guzzle said:

    physiotherapy

    Start fizz (pt in American English?) on that shoulder NOW!

    PT

    I've already been to physical therapy for my shoulder/arm.  It gradually worsened.  It's "frozen up" they say.  Probably not good.  My surgery was hard on me and I'm no where near healed from it (swallowing still difficult), half of my tongue is parylized too......but we can't wait any longer for the treatments.  

    Michelle

  • phrannie51
    phrannie51 Member Posts: 4,716

    P

    You said "I could lean on my fist to keep my mouth closed when I breathed"......what do you mean?  I know since my surgery I wake up at 3am with my mouth covered in "crusties" so thick I can peel them in chunks because I'm so dry but I think my mouth stays closed.

    I still cannot taste very well since neck dissection.  I can swallow better.  I'm afraid that may be a sense that takes a long time to return, if ever.  I'm okay with that.  I'm okay with the scar.  My arm still won't raise above my shoulder and hurts, I'm okay with that.  Funny how much we are okay with to stay alive.  

    Again, you are all such life savers for me.  I really don't think I'd be prepared at all for any of this if it were not for each of you.   

    Michelle

    I got 3 extra chemo

    treatments after radiation was done.....it was Cisplatin and then a 4 day fanny pack of 5FU - the 5FU tore my mouth and lips up bad.  If I managed to sleep with my mouth closed (slathering my lips with Aquafor), my lips wouldn't crack and bleed when I woke up in the morning.  I'd kind of prop myself up in my recliner, put my elbow on the arm, and lean my chin in to the cradle of my hand....and sleep that way.  The "after rad/adjuvant chemo" was the worst part of treatment for me....I had NPC, and adjuvant chemo seems to be pretty standard for that.  You won't have to deal with 5FU (the FU part of it's name stands for exactly what it does to those who have it...Laughing).

  • Goyca
    Goyca Member Posts: 220
    Good luck Shell :) don't

    Good luck Shell :) don't forget to lsn to some music during the session, it helps a lot.

    can feel the positive attitude :) stay like this.

     

    hugs,

    Goyca

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Shell

    Sounds like you are ready, on the Eucalyptus I use the oil but don’t doing it while in treatment. Something else I use is Aloe Vera; I have it growing in my back yard and would just cut what I needed. I use it when taking a bath just rub it all over my skin. Will be thinking about you come Wednesday,

    Tim Hondo  

  • lornal
    lornal Member Posts: 428
    Metal Taste

    Get plastic forks and spoons.  You'll want to avoid using metal utensils. 

    Don't eat food out of a can.  I had my husband search for "canned" fruit in a jar - it was harder to find 7 years ago - but now I see it everywhere.

    I ate lots of peaches - they just kind of slide down.

    For meat, I went to the butcher shop, and asked them about what I could eat when my throat hurts.  He sliced rib-eye steak paper thin. I sauteed it in butter, and it was easy to eat.

    Soup is good - but usually from a can - start making and freezing some now if you are up to it.  People from my church made soup and brought it over.  That was so helpful.

    Best of luck!

     

    Lorna 2007 & 2014

     

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    I think...

    everyone has already said what I was thinking :)   I love your attitude and that will go far!!  I never had skin issues too much...I used Noxema face scrub everyday since I am 42 and still get acne breakouts.  They think that an ingredient in that wash helped my skin!  It's not the regular Noxema, but a face wash made by them for adult skin. 

     

    Be prepared to take naps.  I'm not a real "sit still kinda gal", but learned very fast that when my body told me to rest....I did.  Best of luck to you through treatments.  We are all here cheering you on!!

  • Charles77066
    Charles77066 Member Posts: 14
    Get some old tee shirts and

    Get some old tee shirts and cut them around the neck so they won't rub the burns.

  • Sonja.K
    Sonja.K Member Posts: 79 Member
    We Got This!

    Cool

    I started my thirty radiation today, one down, twenty nine to go!  Piece of cake Michelle, in and out.   I think this six weeks is going to go fast.  We got this.