THE ESSENTIAL TREATMENT KIT FOR HNC PATIENTS.

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sweetblood22
sweetblood22 Member Posts: 3,228
in Head and Neck Cancer #1
This was an idea and thread started by adventurebob last year some time. These are all items we compiled as things we found we really needed to help us get through treatment. Obviously, no one needs everything, but I know I used a lot of stuff off this list. So perhaps if you are just starting treatment, or know some one who is, maybe you may want to get some of these things or give the person a gift basket filled with some of these items. I don't think I ever linked this to the super thread like I wanted to, so I want to check that again. I didn't see it, but it might be because I've had a headache since Wednesday.

Please feel free to add additional items that you found were essential during your treatment time.


I am reviving this thread since it is a great resource as to what would be great for a new person starting treatment.   We have a few here that are new, so maybe this will be helpful.  I have also gone down the whole thread and tried to just pick out the items that are useful.  I tried to get everything, there's a lot!  

1. Lotion for skin
2. Green tea Or herbal tea
3. Biotene dental products
4. Aquaphor 
5. Baking soda / salt  and peroxide.  Recipe / instructions or rinse
6. Journal / log book
7. Thermometer 
8.  Immodium
9. Ensure or Boost
10. Bottled water and or a good water bottle 
11. Cotton hankie
12. Fleece hat
13. Hard candy
14. Blanket
15. L-Glutamine Powder
16. Home blood pressure monitor kit
17. Slippers / house shoes
18. Caloric intake book or website like my pyramid tracker to make sure you're getting in enough calories
19. Coupons for frosty's or shakes
20. Tissues
21. Ace bandage chip clip or netting for holding peg tube 
22.  Solo 16 oz cups and napkins for mucus spitting
23. Call SPOHNC or see superthread for link for the free book. We Have Walked In Your Shoes. A Guide to Oral Head And Neck Cancer. 
24. American Cancer Society. They will send you a packet of info and free stuff as well.  Will also reimburse you for mileage to hospital during treatment.  
25.  Lip balm. (I love CO BIGELOW from bath and body
26. Stoppers 4 
27. Calendula cream for neck burns.
28. Books like, Creating A Cancer Fighting Kitchen
29. Magic Mineral Broth or recipe for broth. Or give them a good home made rich stock with no salt.
30. Soft bristle tooth brush
31. Sponge/foam brushes for tooth brushing when mouth is too sore for soft bristles 
32. Paper tape
33. Water proof tape
34.  Drain sponges or 2x2 gauze bandages for peg tube
35. Baby wipes
36. Pill crusher splitter
37. Pill organizers 
38. Straws 
39. Package of note cards or thank you notes
4o. Ear plugs  
41. QTips
42. Small rubber coated baby spoon. Some people say they like them even better than plastic cutlery.
43. Toothette mouth moisturizer. (sometimes this comes in a kit with a rinse and sponges on a stick)
44. Protein powder
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Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
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    iPad2 Power
    Here come the power of the iPad...Sweetblood Unleashed, LOL....

    Just teasing awesome listing Dawn.

    JG
  • KTeacher
    KTeacher Member Posts: 1,103
    #3
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    Small pillow
    After the neck dissection this summer a small travel pillow or 2 or 3 came in handy. I was very uncomfortable riding in the car, needed a pillow to rest arm on, a pillow to rest the other arm on, a pillow for my neck (Dr. Mary mentioned orthodics for the neck in another post!). I was the queen of pillows in the hospital, kept asking for more.

    I think that I need to take out stock in Aquaphor, it is the only thing that is helping my lips, I need to reapply while eating.

    Thank you for bumping up the post, many new people are on board and every little thing can be helpful.
  • nwasen
    nwasen Member Posts: 235 Member
    #4
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    essentials
    For women (unless you give up shaving!) and electric razor. I bought a Lady Gillette. I still have it but now am able to use a regular razor.
    I also invested in a bathtub/shower mat that has the suction cups as I live alone and had a fear of falling. When I lost all the weight I got alittle unsteady on my feet.
    Nancy
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #5
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    nwasen said:

    essentials
    For women (unless you give up shaving!) and electric razor. I bought a Lady Gillette. I still have it but now am able to use a regular razor.
    I also invested in a bathtub/shower mat that has the suction cups as I live alone and had a fear of falling. When I lost all the weight I got alittle unsteady on my feet.
    Nancy

    Nancy
    How come you couldn't use a regular razor? I think I am missing something. :)
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #6
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    sweetblood22 said:

    Nancy
    How come you couldn't use a regular razor? I think I am missing something. :)

    I was told
    I was told not to use any sharp object, if we who have been radiated cut ourselves in the radiated area it is hard to stop bleeding and more importantly it takes a very long time to heal. Also for those who have had a neck direction they have removed so much and one area exposes the carotid and you do not want to cut that.

    john
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #7
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    fisrpotpe said:

    I was told
    I was told not to use any sharp object, if we who have been radiated cut ourselves in the radiated area it is hard to stop bleeding and more importantly it takes a very long time to heal. Also for those who have had a neck direction they have removed so much and one area exposes the carotid and you do not want to cut that.

    john

    I can understand that for
    I can understand that for men, but I'm still trying to figure out why for women? I shave legs, pits and bikini area, none of which were radiated or had surgery. I am still missing something. Lol
  • KTeacher
    KTeacher Member Posts: 1,103
    #8
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    sweetblood22 said:

    I can understand that for
    I can understand that for men, but I'm still trying to figure out why for women? I shave legs, pits and bikini area, none of which were radiated or had surgery. I am still missing something. Lol

    Dawn
    I would rather call you Sweet! My sister had double knee replacement and she was not supposed to shave I believe 1 week before and weeks after (I will need to check with her about number of weeks). On the day in 2010 that I had my lip surgery, she had a hip replacement, we were the hip, lip sisters (can't help myself, I teach Kinder!) again no shaving. I was never told not to, just didn't feel like it (I know, yuck!) I finally broke down and got my brows waxed weeks after radiation ended. My sister was told not to shave for risk of infection, not just skin but getting into blood.
    She did the replacements and I did cancer, we are finished with both!!!!!
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #9
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    KTeacher said:

    Dawn
    I would rather call you Sweet! My sister had double knee replacement and she was not supposed to shave I believe 1 week before and weeks after (I will need to check with her about number of weeks). On the day in 2010 that I had my lip surgery, she had a hip replacement, we were the hip, lip sisters (can't help myself, I teach Kinder!) again no shaving. I was never told not to, just didn't feel like it (I know, yuck!) I finally broke down and got my brows waxed weeks after radiation ended. My sister was told not to shave for risk of infection, not just skin but getting into blood.
    She did the replacements and I did cancer, we are finished with both!!!!!

    Lol. You can call me Sweet if you like.
    With all the poking and prodding I have had, no one has ever told me not to shave. Huh
  • Wrex
    Wrex Member Posts: 3
    #10
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    sweetblood22 said:

    Lol. You can call me Sweet if you like.
    With all the poking and prodding I have had, no one has ever told me not to shave. Huh

    1st post
    I went through chemo/rad for cancer on both tonsils, base of tongue in May thru late June 2011, no surgeries! recovering just fine.
    Still dealing with some of the side effects most people deal with, the similar thing that I went through.
    I have some nerve/strength issues from rad treatments and chemo side effects with my hands & feet, but I'm getting better & stronger all the time.
    The thing about the electric shaver might be if you've acquired really shaky hands due to side effects, shaving w/a razor can be difficult,
    It was for me.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
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    Shaving and Cuts
    Dawn I was given similar instruction about shaving, sharp objects and cuts. But it was actually warned inconjunction with chemo more than the rads.

    Due to the lower blood counts and ability to fight off infection and lowered clotting ability.

    JG
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #12
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    Skiffin16 said:

    Shaving and Cuts
    Dawn I was given similar instruction about shaving, sharp objects and cuts. But it was actually warned inconjunction with chemo more than the rads.

    Due to the lower blood counts and ability to fight off infection and lowered clotting ability.

    JG

    Makes sense.
    Makes sense, with my Fanconi Anemia blood disorder you would have thought someone might have mentioned it.

    Ok, movin' on. Anyone got any more stuff that they found essential?
  • Wrex
    Wrex Member Posts: 3
    #13
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    sweetblood22 said:

    Makes sense.
    Makes sense, with my Fanconi Anemia blood disorder you would have thought someone might have mentioned it.

    Ok, movin' on. Anyone got any more stuff that they found essential?

    Netflix,
    The Internet,
    My
    Netflix,
    The Internet,
    My iPad! ;)
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #14
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    Wrex said:

    1st post
    I went through chemo/rad for cancer on both tonsils, base of tongue in May thru late June 2011, no surgeries! recovering just fine.
    Still dealing with some of the side effects most people deal with, the similar thing that I went through.
    I have some nerve/strength issues from rad treatments and chemo side effects with my hands & feet, but I'm getting better & stronger all the time.
    The thing about the electric shaver might be if you've acquired really shaky hands due to side effects, shaving w/a razor can be difficult,
    It was for me.

    WREX..
    Welcome to the forum Wrex...

    I had STGIII Tonsil Cancer SCC HPV+ also (plus a lymphnode), tonsils out, and sixteen weeks of chemo and seven of those were with concurrent chemo/rads...

    Dx in January 2009, completed Tx in Jun2009...

    All has been good and I was pretty lucky having minimal side effects.

    Just wanted to say that it gets much better over a long time... Almost 2 1/2 years out now,I have all taste back and 95% or so of my saliva has returned.

    Best,
    John
  • Wrex
    Wrex Member Posts: 3
    #15
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    Skiffin16 said:

    WREX..
    Welcome to the forum Wrex...

    I had STGIII Tonsil Cancer SCC HPV+ also (plus a lymphnode), tonsils out, and sixteen weeks of chemo and seven of those were with concurrent chemo/rads...

    Dx in January 2009, completed Tx in Jun2009...

    All has been good and I was pretty lucky having minimal side effects.

    Just wanted to say that it gets much better over a long time... Almost 2 1/2 years out now,I have all taste back and 95% or so of my saliva has returned.

    Best,
    John

    Thanks Skiffin!
    I was stage 3 scc also, my doc said it was on the verge of hitting lymphs, so I guess I was super lucky!
    I was diagnosed late April, finished rad/chemo end of June. Was sick and outta work for almost 4 months
    But I'm back at work now full time, starting to eat more normal foods, playing music with both of my bands again,
    Things are good, can't wait to see what it's like a year out! I'm glad I'm not sick anymore, it does get better!
    Steve aka "wrexican"
  • Hondo
    Hondo Member Posts: 6,636 Member
    #16
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    Wrex said:

    Thanks Skiffin!
    I was stage 3 scc also, my doc said it was on the verge of hitting lymphs, so I guess I was super lucky!
    I was diagnosed late April, finished rad/chemo end of June. Was sick and outta work for almost 4 months
    But I'm back at work now full time, starting to eat more normal foods, playing music with both of my bands again,
    Things are good, can't wait to see what it's like a year out! I'm glad I'm not sick anymore, it does get better!
    Steve aka "wrexican"

    Hi Wrex
    I also like to Welcome you to our little faimly here on CSN, sorry you have this stuff but glad you found the right place to be.

    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member
    #17
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    Skiffin16 said:

    Shaving and Cuts
    Dawn I was given similar instruction about shaving, sharp objects and cuts. But it was actually warned inconjunction with chemo more than the rads.

    Due to the lower blood counts and ability to fight off infection and lowered clotting ability.

    JG

    JC
    During Chemo I had no problem shaving as I have nothing to shave off, it all fell out. lol
    Funny thing I lost my Beard and Moustache but not the hair on my head, some of it fell out but not a lot.

    Hondo
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #18
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    sweetblood22 said:

    Makes sense.
    Makes sense, with my Fanconi Anemia blood disorder you would have thought someone might have mentioned it.

    Ok, movin' on. Anyone got any more stuff that they found essential?

    maybe i missed it
    For anyone getting rads, I would strongly recommend an anti-burn agent. You mention aquaphor, and maybe aloe, but there is also biafene and probably others on the market; I would simply list it in a generalized way rather than specifying a particular brand, but that's just me.

    Take care,

    Joe
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #19
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    soccerfreaks said:

    maybe i missed it
    For anyone getting rads, I would strongly recommend an anti-burn agent. You mention aquaphor, and maybe aloe, but there is also biafene and probably others on the market; I would simply list it in a generalized way rather than specifying a particular brand, but that's just me.

    Take care,

    Joe

    Well, the first one listed
    Well, the first one listed was "lotion for skin", I don't know if that is what Bob meant. But, ya, good call, Joe. Should be 'burn cream' listed too.

    I had Radiaplex, and I know is a Silvadine cream too, or something like that.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #20
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    sweetblood22 said:

    Well, the first one listed
    Well, the first one listed was "lotion for skin", I don't know if that is what Bob meant. But, ya, good call, Joe. Should be 'burn cream' listed too.

    I had Radiaplex, and I know is a Silvadine cream too, or something like that.

    Silvadine
    I believe that's for severe weaping burns...prescribed also...good stuff.

    So ummmm....how's the Dawn Dish Soap, LOL.... :)~

    JG
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #21
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    Skiffin16 said:

    Silvadine
    I believe that's for severe weaping burns...prescribed also...good stuff.

    So ummmm....how's the Dawn Dish Soap, LOL.... :)~

    JG

    before and after
    Silvadine, as you point out, John, is for burn treatment (specifically for the 2nd and 3rd degree variety), while Dawn and I are talking about a preventive ointment, something to apply immediately after rads every day to try to reduce or eliminate burning, at least on the surface.

    So I am not sure I would include Silvadine in a 'survivor's kit', hoping to avoid it, instead, while I would include a non-petroleum-based anti-burn cream for prevention.

    Take care,

    Joe

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