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Packing list help please

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

I could really use some advice. My husband starts radiation and chemo next week, the following week, we were fortunate to be referred to a Hope Lodge during his treatment. We will be at the lodge for 6 or 7 weeks, and I'd like to go as prepared as possible. Part of the agreement to stay is that I am always with him. So I'd prefer to minimize having to call others who are not so close by to make special deliveries. I can't imagine my husband will be really excited to be going for any extra car rides, and I'd like to think if I am smart about it I can save him some energy.

Since we haven't been down this road, I am not sure what might comfort him in the coming weeks. I plan to take his humidifier, glycerna, his liquid Advil, the blender, and cases of water.. I bought basis soap, and special tooth paste, biotene mouth wash, very soft brushes, his triangle support pillow to raise his head. Are there things that any of you or your loved one found comforting? that you wish you'd known sooner about?

Not quite sure what helps.. But hoping amazon can deliver whatever I miss!

Thanks, Kari

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

on my neck. A lot of the things like that are going to be things you'll try and either they work or they don't....(I have a cupboard full of stuff that was either used sparingly or not at all). Amazon was my friend all thru treatment...nearly anything I needed I could find there (including my Boost), or I could find at Drugstore.com.

If you're staying on the east coast, pack him some warm things to wear inside, for sure. Tolerance to cold seems to disappear with chemo....

I'll bet others will think of things...my memory is so awful anymore...LOL.

p

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I'm sure most of us will chime in.

Short, silly videos - half hour to hour funny shows
MUSIC
Socks, lightweight winter hat, sweaters (I was often cold during treatment)
Reminders of things that are important (pictures of loved ones, special blanket, shirt, etc.)
button up shirts, if he has a PICC or feeding tube
LOTIONS - skin may get dry or flakey or irritated - I was glad I had "spa socks" and cotton gloves - moisturizing and covering hands and feed helped a lot
laptop - I found comfort in getting info in black and white - spreadsheets for meds, tracking water and calorie intake, etc.
ice pack - at times, sooting on neck
reading materials - a couple of books and a few magazines. I found that things requiring only short periods of concentration worked best for me.

Tons of other stuff, but I'm tired and not on the ball

It helped me a lot that I bought a few of those storage units on wheels that are plastic - anywhere from about a foot to a three feet tall - clear-ish plastic, drawers - I ended up with LOTS of odds-n-ends, meds, etc.

water pic (used only on the lowest setting)to augment my brushing with Biotene and ultra soft brushes

Depending on chemo, he may HAVE to use an electric razor - no disposables

Can't recall his chemo - if he'll lose his hair, I'd recommend different types of hats and bandanas or doo-rags. Light weight knit hats served me well indoors (surprising how much body heat you lose when you're bald).

CivilMatt's picture
CivilMatt
Posts: 2920
Joined: May 2012

Hi Kari,

The Superthread (first thread top of the opening page off H&N forum) has a list of often used items, it is pretty thorough. Items needed change as one moves through various stages of treatment. The first 3 weeks is mostly nausea and some pain , followed by spitting , gagging, coughing, sore throat and mouth sores. Throw in complications with more pain, dehydration and nutritional issues, finish off with neck burn, sleeplessness and you have the picture.

Some people breeze through and others are fighting the battle all the way. Mainly you want to head-off nausea, be ready for pain, drink lots of water (hydration and swallowing) and get nutrition, by mouth or PEG. Remember to tell the doctors and nurses what you are feeling, they will more than likely have something. Don’t try and tough it out, you will have more important things to worry about.

Good Luck!

Best,
Matt

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

The first couple of weeks of radiation are "easy". All the problems start appearing after between 7 to 15 treatments. And they come on slowly. So you will have the opportunity take your husband with you on some errands. If fact, he might like to get out. But you should have your supplies laid in before the final couple of weeks. They are not any fun at all. Moreover, the first couple of weeks post treatment are also no fun. Rick.

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Hi Kari,

As Matt mentioned...

There is a list on the SuperThread that has been added to and compiled by many...

Essential Items For Head And Neck Cancer Patients

Of course there is some redundancy, and many thng that you won't need.

But hopefully this will give you some ideas for a good start or basic list.

Best,
John

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

I thought I had investigated every link on that page -- yet not the one I really needed!

Thanks for pointing it out!

Now we have a much better list... And great to learn about Mugard tonight, my husband is asking for it on day#1

~Kari

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Hey....

How did you get your dog to use that electric tooth brush?

I have the hardest time getting my two choclate lab sisters (Kali & Jazzy) to use their tooth brushes afte eating...

Best,
John

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

John,

The key is the chicken flavored toothpaste! Consistency every day helps.. Our vet and groomer are amazed at his bright whites.

Kari

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

LOL, I was teasing about the after meal brushing...

But Kali and Jazzy do get their teeth brushed with a finger prush and peanut butter flavored toothpaste.

Kids..., LOL, you gotta love them.

JG

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

during rads...I started using it within the first few days, and had no mouth sores for the duration. It's good stuff.

p

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Phrannie,

That is great to hear! Dan doesn't want a PEG, but I know how he is if he bites his tongue, he'll stop eating! And more than anything I want to see him succeed fighting this his way -- I am calling the doctor this morning for a prescription.

Thank you, Kari

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

but you can get it from Drugstore.com....I'm a big believer in having things on hand...what works for one, might not work for another...and vice versa. I know I'd have tried the Ulcer Ease if I'd known about it.

p

laura1970
Posts: 1
Joined: Dec 2012

My husband really likes Ulcer Ease. You can call your pharmacist and ask them to do a wholesale order from their supplier. It is really the only way you can get it. He liked Ulcer Ease more than the Magic Mouthwash for pain in the mouth from radiation.

AJW1966
Posts: 69
Joined: Nov 2012

I just finished 30 rads and am now day 4 post rad.
I have to push this product because of how well it worked.....Calendula Cream! Get at least two tubes and apply to entire radiated area as often as you want and liberally.
My neck looks really well according to the doc's and nurses. The nurses heard about it from breast cancer women who loved it because of how well they're skin turned out after rads.
So i tried it and i love it!
I've read that silver sulfadiazine cream is great for post rad treatment if it's needed.
I used MuGard and worked very well for me.
Other than that, the list of items provided in this post are pretty spot on.

All the best, God Bless

Alan

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

My son is out looking for calendula cream, amazon is delivering the ulcer ease and more calendula cream, I am awaiting the call from mugard folks (gave then insurance info this morning!), the dentist is getting Xylitol candy (suppose to help with encouraging saliva production) and order some kind of mouth spray, only thing left on the list is the drink powder that helps with energy and I think I will be able to open my own pharmacy! I tend to order 6 of everything... Since we won't be staying at home, I thought the less we have to find in a city new to me the better.

I have the foods, prescriptions, pillow wedges, lemon glycerine swabs, tooth pastes, mouth wash, sponges on sticks, liquid Advil, ... And for Dan's Oncologists.. I am making them a list... Since they didn't have one.. Maybe we can help the next new patient.

Thanks everyone for taking the time to respond... Dans first Rad is tomorrow... It is very comforting to have so much experience along on our bus ride.

My prayers for you all,

Kari

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