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Re: radiation and nausea issues [Re: ConnieT] #197053
08-28-2018 06:36 PM
08-28-2018 06:36 PM
Joined: Jun 2013
Posts: 270
alabama
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KristenS Offline
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KristenS  Offline
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Joined: Jun 2013
Posts: 270
alabama
Dittoing Christine! My job was already (fortunately) homeschooling, and Scout leadership and other youth work. That was / is volunteer work, but still needed doing. Luckily my co-leaders stepped up and filled in the gaps with both my girls and my guys so I could just go as I felt able, in the beginning. (There was a humorous meeting where I went just to help out one night and the project ended up being about writing haiku, and it turned out I was the only adult who'd done any ... and I'd just had the surgery and could barely talk ... gah! Try pantomiming haiku! LOL. But we did have a blast.) After a time, though, I had to let it go no matter how much fun I was having, because all those people meant all those germs ... and it wasn't something I could risk. And then there wasn't the energy. It taught my scouts a lot about being supportive of folks who need help (and continues to do so), but it was frustrating to adapt to ... and I kind of expected it.

I had some sweet caregivers from church who helped get my children to some of their special activities when I couldn't ... they arranged it between them, and I didn't always know who was doing what (it was a small group, and all women I trusted, but I didn't know who was driving which days) ... and even today, my memory is fuzzy enough, I don't recall who all helped .... I wish I did. I'd thank them more. I thanked them at the time, but I'd thank them again now, because it really helped us all. Caregivers are a big help, in more ways than they realize. So, because I can't thank all of them, I'll pay it forward and thank you instead. smile Thank you for being a caregiver!


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: radiation and nausea issues [Re: ConnieT] #197054
08-29-2018 08:19 AM
08-29-2018 08:19 AM
Joined: Aug 2018
Posts: 169
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ConnieT Online OP
Senior Member (100+ posts)
ConnieT  Online OP
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Joined: Aug 2018
Posts: 169
((((((Hugs))))))) to you Christine and Kristen. You have been rocks for me in this. I've told people that it's interesting that survivors are helping carry me along in this journey but then, it shouldn't surprise me as you know every step that is ahead in many ways.

Today, i posted on my husbands private fb page a picture I took. There are puzzles set up at the cancer center. I love building puzzles...it helps me relax in stressful times. Well, there had been this hard huge puzzle sitting there for over 6 months according to other patients and no one would build it. It was horrible and I'm really good at puzzles. Since husband had to get that IV the other day, I had 4 hours to sit and finish that darn thing. Now we have 2 easier puzzles of just 300 pieces sitting out! I names myself puzzle director! I came in today and someone was so happily sitting down and building a puzzle while he waited for his appointment. It made my heart sing. I will be bringing some cat puzzles in next week!. I posted on the private fb group the things i have seen that ill patients and their caregivers can appreciate.

Someone donated some LuLarue pants for patients/caregivers. I've heard they feel like butter on the body. How thoughtful!

The cancer center has a healing garden. They grow a lot of herbs/vegetables and the nurses go out daily to pick the stuff ready to harvest, bag it up in serving sizes and label it. There is also a long table of fruit that a local grocery store donates. I"m quite impressed with the Mercy Hospital system and trying to teach people better how they can help.

Next...my friend convinced me to meet with husband's co-worker to set up a schedule for driving 2 days a week. After my meltdown, I realized we are just getting started in this and I will burn out despite how strong I am. I told him to drive himself Thursday and Friday. He is capable. Next week is chemo #2 and he will be hospitalized. I will drive the rest of next week but starting week 5, I'm enlisting help. I don't want anyone to have to deal with someone throwing up on the 2 hour drive....they probably will never offer again!


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: radiation and nausea issues [Re: ConnieT] #197055
08-29-2018 11:08 AM
08-29-2018 11:08 AM
Joined: Jun 2007
Posts: 10,196
PA
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ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

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Joined: Jun 2007
Posts: 10,196
PA
If you havent already contacted the American Cancer Society (ACS) about their volunteer driver program call them ASAP! They're available 24/7/365 so you dont have to worry about what time you are calling, someone there can and will help. I think I may have mentioned it to you, if not Im sorry I havent done so yet. Theres so many things to relay to newer patients/caregivers that more minor things can get easily missed. There really are people who will happily volunteer to drive your husband to and from treatments..... even far distances, even if he is nauseous, even if he is grumpy!!! They attend a class on how to manage those things ------ even if the patient pukes. They always carry a puke kit with them! My suggestion would be to get each of your helpers to pick a day they can commit to driving your husband and then you will know which day/s you must be his driver. I think it would do him a world of good having someone drive him who is a cancer survivor. He could talk freely to them and they understand what he's going thru... well kind of... OC patients tend to have it worse than most other types of cancer patients with treatments affecting their ability to eat, talk, etc. Plus if you have alternate drivers it will give your husband time to reflect and see just how much you do for him on a daily basis, hopefully he will appreciate what you do. I had volunteer drivers (total strangers) spend 3 hours a day in the car to get me back and forth to my treatments. I was so impressed at their kindness that I became a volunteer driver too although I rarely have the time anymore.

Your husbands co-workers are a great resource!!! Use them!!! Anyone who volunteers to help are asking because they care and really do want to help. In the next couple weeks your husband will probably begin feeling the effects of treatments even more. Im sure you could use a hand with some things around the house. Even if it is just a neighbor put in charge of taking your garbage and recycling out to the curb and returning the cans every week, its a help. Some weeks I sure wish I had someone to do that for me! I suggest you can start by making a list of all the things you have to do without your husband doing them and build it from there. Take advantage of friends, relatives, and co-workers offers and give them "jobs". Cancer can bring out the best in some people, dont be surprised if people you barely know offer their assistance.... take it! Some people show their worst side when someone close gets a cancer diagnosis. Some will freak out and run for the hills like its contagious then come slinking back once the patients recovers. I was very surprised at some co-workers I hadnt known that well really stood up and tried to help me while a few very close people couldnt be bothered even returning a text or phone call. As the caregiver you have soooo much on your shoulders that a hand here and there will be a huge help to you.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: radiation and nausea issues [Re: ConnieT] #197059
08-29-2018 07:39 PM
08-29-2018 07:39 PM
Joined: Aug 2018
Posts: 169
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ConnieT Online OP
Senior Member (100+ posts)
ConnieT  Online OP
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Joined: Aug 2018
Posts: 169
I am blessed to have found this group.

I looked and there isn't any American Cancer services in my area at all unfortunately. I am enlisting his co-workers to help me twice a week after next week. I asked the gal who is coordinating drivers to meet me for lunch next week just so we can meet. I do not know her but I so appreciate all the support a total stranger has given me. You are correct about the people who come out of the woodwork to help and the ones who seem to disappear. I have a feeling I will be a better helper to someone else in the future from all I'm learning.

Another friend texted and asked to go out tonight to take care of me. I'm an extrovert so being around people gives me energy. I needed that after my meltdown the past few days. I also took a long nap this afternoon to refresh my body. Even took a long walk.

I noticed no one else in radiation treatment is having someone drive them every day. I told him that I'm taking a 2 day break and he can drive himself. I know that driving will not be possible after this week but I'm taking a break as I still have to drive for hours for my business most days....I am taking care of me first so that I can take care of him when he really needs it.

thanks for all the support and wonderful information!



Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: radiation and nausea issues [Re: ConnieT] #197060
08-30-2018 05:10 PM
08-30-2018 05:10 PM
Joined: Apr 2018
Posts: 48
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DeniseG Offline
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I probably could have driven myself through a lot of my treatment, the last 2 weeks, no. Luckily my husband and I are both retired so he drove me most days then would take me to Jamba Juice for a smoothie.He even got a round of applause from the staff when I rang the bell at the end of my treatment. It meant a lot to me and hopefully your husband can appreciate what you are doing for him. Use every bit of help you can get, things are going to get worse for him, and you, from now on. If you haven't yet, get some emesis bags from Amazon and keep them on hand for the vomiting, life saver! You will get through this! I encourage you to cultivate relationships with people who you can confide in about your struggle through this. Even at the facility your husband is being treated at, they surely have counselors or psychologists that can help the caregivers too, maybe look into that.


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 - 5/18
Clear PET scan 10/18
Non smoker, occasional alcohol use
Re: radiation and nausea issues [Re: ConnieT] #197061
08-30-2018 05:28 PM
08-30-2018 05:28 PM
Joined: Aug 2018
Posts: 169
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ConnieT Online OP
Senior Member (100+ posts)
ConnieT  Online OP
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Joined: Aug 2018
Posts: 169
thank you Denise! I will check into those bags.

I have a strong network of friends who are stepping up to give me an outlet from the stress.

I hope my husband will realize all I do but right now, I'm totally invisible and he gives our daughter who has done 2 things for him all the credit of taking care of him. He's been emotionally/verbally abusive to me for years. This is going to be a hard journey for him. I have raised my kids and gotten along without him for 25 yrs now, he needs me. I don't need him. But I look at him as one of God's children and I will take care of him for this reason. Maybe...he will change. I'm not holding out for it but I will stand back and see what this horrible journey brings.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: radiation and nausea issues [Re: ConnieT] #197062
08-30-2018 06:58 PM
08-30-2018 06:58 PM
Joined: Jun 2013
Posts: 270
alabama
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KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
Gold Member (200+ posts)
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Joined: Jun 2013
Posts: 270
alabama
If you can't get special bags, my personal illness kit was always a stack of grocery store bags (the recyclable kind), a roll of toilet paper (for wiping my mouth, etc), and a bottle or two of water (for getting rid of the taste). I had bad panic attacks prior to cancer (not so bad now), and got pretty sick on a regular basis, so I carried a kit like this in my car and stuff in my tote bag all the time. Usually had a place to dispose of stuff, so it wasn't going round trip with me ... I suppose some sort of scent-dampening bag would help ... but it helped a lot just to know I had stuff handy. Back then I'd say a mint for afterwards would help, but with OC, mints burn once radiation kicks in, so definitely not that ... maybe a Vitamin C drop or other hard candy to suck on, if he wants flavor and can handle something in his mouth.

That's my instant nausea kit, anyway. smile Hope you don't need one, but if you do, it's a quick and cheap way to make one.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: radiation and nausea issues [Re: ConnieT] #197063
08-30-2018 07:52 PM
08-30-2018 07:52 PM
Joined: Aug 2018
Posts: 169
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ConnieT Online OP
Senior Member (100+ posts)
ConnieT  Online OP
Senior Member (100+ posts)
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Joined: Aug 2018
Posts: 169
I'm learning to be prepared for the unexpected! one of the nurses got irritated with me for not having a back up driver when he had to stay for an IV and I was having to give up some of my notary business and rearrange my schedule. I wasn't complaining, just trying to get things taken care of. I wanted to say...hey, this cancer stuff might be a daily routine for you but it's not for me. I'm still learning.

I did go get him a small trash can, water and towels the other day on our way to treatment as he was nauseated. He didn't end up needing them but at least I have some supplies in the car now.

thanks ladies...you are all jewels smile


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: radiation and nausea issues [Re: ConnieT] #197074
09-03-2018 04:35 PM
09-03-2018 04:35 PM
Joined: Aug 2018
Posts: 169
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ConnieT Online OP
Senior Member (100+ posts)
ConnieT  Online OP
Senior Member (100+ posts)
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Joined: Aug 2018
Posts: 169
question. husband gets 2nd chemo treatment tomorrow and 16 th radiation treatment. he is going to be hospitalized. He said the Ensure didn't stay down so well. I said, well, aren't you taking your anti nausea meds since you are going to be needing them anyway? No. they give me a drip before the chemo to help with nausea. ok. common sense tells me to take those nausea meds regularly since the nausea has never gone away this whole time. Fill me in please as I really do not know if he's still trying to be in control or if he is correct to stop taking the nausea meds while still struggling with nausea.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: radiation and nausea issues [Re: ConnieT] #197076
09-03-2018 05:07 PM
09-03-2018 05:07 PM
Joined: Oct 2012
Posts: 1,044
Toronto, Canada
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gmcraft Offline

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gmcraft  Offline

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Joined: Oct 2012
Posts: 1,044
Toronto, Canada
Connie,

The patients are given anti-nausea meds as well as antihistamine prior to being given their chemo meds. I guess that’s why the first day of chemo is usually an okay day for patients. It’s when these meds wear off on the second day that the nausea and chills set in. Your husband should try to stay ahead of the curve using his anti-emetics. Once the vomiting starts, it’s much harder to control. I have been told that by every single nurse John had.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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