Two week post treatment encouragement

grace2017

I hope this encourages some of you that are just getting diagnosed, started with treatment, or in the midst.  My husband is two weeks post treatment for SCC tonsil, HPV+ Stage IV cancer.  He had a neck dissection and tonsillectomy followed by seven weeks of radiation and seven Cisplatin treatments.  He is in his early forties.  No PEG tube.

He is working part-time at home with his laptop, but starting to think about when he will go back into work for a few hours at a time.

Taking 1-2 naps per day and sleeping 9 hours at night.

Walking 1-2 miles per day if weather is decent.

Drinking Orgain, homemade protein shakes, water, milk, eating homemade soups, very squishy pasta, deviled eggs, applesauce covered pancakes, and pudding.  He keeps trying to add in new foods each day.

Taking Gabapentin (9 per day) and 2 mL of oxycodone 3x/day. 

Gets mouth sores - uses baking soda/salt dry "paste" in mouth over sore for 15 minutes at a time and it seems to help. 

Does jaw/neck/shoulder/swallowing exercises multiple times a day.

Neck is healing well, never had open sores/blisters.  Looks less like a bad sunburn and more like a tan.

Monitors constipation issues (medication-induced) and adjusts as necessary.

Has some ringing in ears and occasional ear fuzziness/pain.

Has a crazy hair/beard pattern going on where he lost hair due to radiation.

Throat gets sore if he talks for more than 5 minutes, particularly if he speaks on phone.

He is thankful, grateful, prayerful, and feels God helped him through this step by step (and continues to, with which I agree!)  His positive attitude and determination is helpful.

He doesn't feel the same each day, sometimes a little better, sometimes worse, but overall, I think he is doing great. God only knows what the future holds as far as short and long term side effects and treatment effectiveness.  We continue to take it one day at a time. I realize not everyone has experienced this kind of recovery, but I know positive news is celebrated around here, and I thought I'd share some good stuff. 

 

 

Jbrooks

Thanks Grace2017...I am in my

Thanks Grace2017...I am in my fifth week of radiation and am encouraged by his progress.  I am so happy for him and what a relief for you!!!  I can feel your joy in your writing. God bless you and will pray for his continued healing.

bebo12249

It’s always helpful to hear

It’s always helpful to hear from others on the same journey. Thanks for sharing your experiences. Bill

Pclark21st

Its great to hear everyones

Its great to hear everyones stories to garner info from them all while you start down this unknown path.  Thank you for sharing your story.

patricke

Congratulations Grace and to your husband, his recovery progress is great news!  As I am want to say, Keep It Mov'in Forwad. 

Patrick

dwp155

How is he now?  An update would be helpful. I am 8 weeks post threapy- 42 radiation, 6 cisplatin in 6 weeks.  Still sleeping 12 - 14 perday pay to play...lol.  Taste progressing, lyphodema, weird skin and no regrouth of beard.  I walk 15 minutes per day yoga 2 times per week.  But between eating, sleeping and maintenance (skin, teeth, diet etc) that's it.

grace2017

Doing okay

This was just a few days ago, so more of the same, although some of his taste is leaving instead of returning.  Hopefully, he won't lose too much more.

Sounds like you are doing pretty well and have been on a very simliar path of treatment.  Sleep is good - it is a healing time for your body without you interferring.  Keep up the exercise, I've heard that is very helpful.  And I've also heard the hair/beard regrowth can take from 3-6 months.  And LOL on the maintenance, that seems to be nearly a full-time job.  We'll have to check in again in a few weeks and compare.   Take it easy!

BTW, are you still on pain meds? 

Nnk

Just starting

Grace - Thank you for the encouraging post.   I pray that husband continues to heal.   

I am just beginning my 7 week radiation coupled with 3  chemo treatments.   This is after a successful TORs surgery Dec 27th which removed left tonsil with clean margins.  I also had a  modified radical neck surgery that removed 23 lymph nodes of which one was positive but which had signs of ECE.    I have a PEG but only used briefly after surgery

My wife and I have 3 children who are 13, 15, 17 and as we get closer she is thinking she will need to stop work at some point.   

I know everyone is different but can one manage on thier own through this process?  Thank you.

 

soonermom

Working

I had to keep working enough to maintain our insurance, so I did, on a reduced schedule.  During the final weeks of treatment and the beginnning of recovery, we did ask our children to come in shifts to be with him when I had to work.  There were certainly days when I would not have been comfortable leaving him at home alone, plus for us he had periods where he could not drive for various reasons.  As you said, it is impossible to predict how you will respond to treatment.  All I can tell you is to have a plan in place, before you get to a point where plannning is hard, to use your support system to do what is best for your family.  If your wife can quit work, if needed, that might be the best plan.  If she can't stop work, tap your support system.  You likely will have people say they want to help.  You may need to take them up on that offer in ways that will work for your family.  I went to every treatment with my husband as we had a 2 hour plus drive to the Cancer Center, but used our support system in other ways.  I did not want to ask for help but there was no choice.  It ended up being a bonding experience for our family and friends.  Have a flexible plan, as you can't predict exactly how things will go for you.  You will get through.  Courage and strength to you.

Nnk

Thank you Soonermom

Thank you.   That is very helpful and good advice on my first post after finding this website.    Your experiene is inspirational.   We are definitely planning.   Thank you again. 

grace2017

Nnk

Zoinks, just typed out a long reply and lost it!  I'll try to remember what I wrote...

My husband's treatment sounds very similar to what you have experienced so far.  We also have teens at home.  It was a little different for us, however, since the cancer center where my husband was treated is about three hours away from our home.  He was able to stay there and work on his laptop and needed to have a caregiver with him at all times, not because it was necessary for him physically, but it was a requirement for the place we were staying.  I was with him about 75% of the time and his mom and sister provided coverage as well while I was at home with our kids.  It was definitely a team effort and logistics that only held together with much prayer.  If you are at home and going daily to treatment, your experience will be much different and you should be good for the first few weeks of treatment with your wife continuing to work.  Friends and family are probably offering to help.  This is when they can help in very concrete ways such as driving you back and forth to radiation, driving your kids somewhere, picking up a bag of groceries, dropping off a meal, or arranging a mealtrain type of thing online.  The meals, even if you may not be eating them, will make life much easier for your wife and kids.  It is also nice to have the companionship with you in the radiation waiting room and especially at chemo.  Support is very important and people definitely want to help, so you have to allow them to receive the blessing sometimes.  Older people, especially those retired, have flexible schedules and many love to serve others in their free time.  We were so blessed by some older folks.  They often can deal with the issues surrounding treatment better since either they themselves or others they know have been through it.  Also, your kids will be able to help you more than you may expect and they might need small jobs to know what to do to get through this.  It is hard for kids to see their dad (or any close family member) go through a hard time.  One of our kids became chief protein drink/jello/pudding maker and the other helped with my husband's daily exercises and massaged his shoulders from time to time.  They also played video games together occasionally, which was a good distraction.  They felt helpless, but these small things helped us get through as a team.

I guess it really depends on your wife's hours and line of work, flexibility, commute, etc.  I would probably suggest that she take off the week or two following your treatment to support you during that tricky time, if you are trying to plan ahead.  I'll be thinking of you and praying for you as you get started.  You'll be counting down the days and ringing the bell before you know it! Feel free to ask any questions and I'll try my best to answer them.

Nnk

Thanks again

Thank you again, for the advice and prayers.   I am sure that I will take you up on your offer as I am one week in and feeling impact of Cisplatin on Day 5 as well as radiation on appetite and taste.  I had a negative reaction to steroids but doctor allowed me to stop taking which helped. We are looking into leave for my wife and targeting/preparing for those last weeks as well as taking up offers on meals. 

This week I was able to go for some long walks and fortunately we had a break in the weather that allowed for some activity.   This seemed to help mentally and physically as I am usually very active.  I am hopeful to continue this in some fashion.

I really like the idea of kids helping in little ways to help my wife and also to be involved.  Thank you again.    

grace2017

You're so welcome

The countdown has begun, you can do this!  Getting exercise by walking and getting into nature helps, I know it helps me a lot as well as my husband.  You have to remember all the great things you are fighting for. Nature can have such a peaceful, calming effect as opposed to large radiation machines and dragging an iv pole around!  It is a good time of year to get this done, by summer it will be behind you and you'll be here helping others through.  Hang in there, the prayers will continue.