HELP TREATMENTS START APRIL 30

caregiver wife said:

Help to get through treatment

Charmit, Yes - most here have been through treatment, are in treatment, or are a caregiver.  Best advice, one day at a time.  The experience is different for everyone as the cancers are different, location, size, etc.  Treatment can be rough, but it is doable.  As you have questions along the way, come here.  Someone has already done it.  As for the mask, husband took lorazapam thirty minutes before.  Googling will always give you worst possible scenario.  No one experiences the worst of everything.  Elderly husband, in poor health, stayed mostly active throughout.

Many will be here for you,  Wishing you and your daughter the very best.  Crystal

Thank you Crystal your right one day at a time. However lately I’m going minute to minute with all these emotions. I’m so glad to hear your husband is well and made it through treatment. I guess right now the fear if the unknown. 

God Bless and thank you

Charlene

nancytc said:

Hi Charmit

I can help you through this. I had a similar diagnosis...rt tonsil (took a tors robot surgery removing 4 tonsils and resecting the base of my tongue to find the unknown primary), and had three lymph nodes involved ( had one lymph node excised, three involved. SCC Stage 4a).

Fear is your worst friend right now. My doc prescribed me Lorazepam, and the radiation treatments with the mask were the least of my worries. I am hoping that you have a care giver lined up. My daughter and son took turns giving me 24 hour care, and by week 4 of Chemo/Radiation it was a huge blessing. There are a bunch of potential side effects from the treatment, but be aware but dont buy into them until they happen. We all do not get every side effect. I have some great tips and work arounds if you need them along the way. I would be happy to stay in touch with some form of instant message. I had a good friend who was a survivor (9years) and he was at my beck and call and really helped me pull through this. Dont want to sugar coat it. It is pretty horrible for most of us, but HPV+ cancer is CURABLE. Round up  your supporters, ask for help, prepare. Ask lots of questions especially in this group. We have all been through it. I am 1 year out and now live a relatively normalish existence. Not the same, but very good considering. Stay in a mental state of gratefulness if possible. Stay HYDRATED!!! Most important of all by far! Nutrition second most important. If your doc recommends a Peg Tube, I say GET IT! I could go on and on. Well talk girlfriend! I am praying for you!!!

Your friend,

Nancy

 

Hi Nancy

PLEASE give me tips tips and more tips!!!! Fear is surely my enemy right now and the fear of the 35 days ahead of me. So if you have words of wisdom to get me through I’m all ears for sure and appreciate the help more then you can know!!! Truly feeling blessed to have found this site and all it encompasses. I do have a great care team I’m here in CT and I’m going to Smilow Cancer Center at Yale they have a unit just for head and neck cancer. The feeding tube won’t be put in until they deem its needed. And thankfully treatment will be just on the left side, so I am blessed for that. As for that mask day one I pray I make it through with no melt down!!!  Looking froward to hearing from you!!!

God Bless and thank you

Charlene

Dean54 said:

Welcome Charmit

Your diagnosis sounds alike like mine and I can't hardly believe they didn't take out both tonsils at the same time while they were in there.

I went thru 33 rad. and 3 chemos and made it thru without using the PEG tube, had very little mouth discomfort,and practially no skin issues. I did get somewhat nauseated from the chemo but if you get on the right meds that will work for you, it's not that bad.

I'd say I lost a little bit of hearing and have some tinnitus from it, not bad over all. It did leave me with reduced saliva and very little taste so it's makes eating rather difficult. No food is enjoyable so it definitely changes your outlook to "eat to live" not the other way around.

5 months out, I feel completely back to normal except for the eating part, some excessive mucous, and dry mouth. I also have to be careful swallowing as it wants to go down the wrong pipe.

Looking ahead, it does seem like a pretty daunting task to get thru but you can do it and it goes by pretty fast. We will be here for you with any questions you might have.

Hi Dean

Oh the removal of both tonsils at different times was a huge thing for me and my family we all asked when my ENT was to take the left one why not take the right. His reply he doesn’t think the right was affected and he was correct, but PET scan right tonsil lite it so month later out it came. And recovery at 48 for tonsillectomy is horrid now times two. Needless to say long two month with 3 surgeries behind me.

And now facing the treatment, I’m so glad your treatment went pretty well for you and glad your doing well today. I’m scared of the radiation and all it entails from mask which scares the hell out of me to the side affects. The list is long and I know not all get all or just some. I’m hoping that seeing treatment is just being done on the left side it will help with all the side affects. When the 30th comes they may need to knock me out to get me on that table no lie I will be shaking like a leaf!! 

‘Any advice, word of wisdom you can offer please share and I thank you in advance for sure. 

‘God Bless and thank you

Charlene

Billie67 said:

I hear ya

We will be here the whole time for any questions you might have! I remember my son was playing football and was on the homecoming court. It was the homecoming game and he needed me to be his escort onto the field. I wasn’t going to miss it for anything and I didn’t! I was tired, weak, underweig and super cold but I was there! This was shortly after treatment for me too. You can and will do what you need to do. It’s what we moms do!!! 

Not sure what area you live, but it will be super helpful to have people near by who can take you to your appointments. I’ve often thought about becoming a “friend” to those going thru treatment and just offering to drive people to their appointments. 

Yes we moms sure do rally for our children. She came to me and asked if I would be tbere and I said absolutely I would be!! Don’t want her worrying, and I have so many family members and friends who offered rides. It’s about a 45 min ride but I know my mom would be taking me daily cause again that’s what moms do. And my husband is able to misss work to take me the days she can’t. I am sure you mentioned it but how long ago was your treatment? What was the worst part of it and I did you cope??

SuzJ said:

First off

Stop, breathe, just, breathe.

Stop consulting Dr Google, its the scariest Dr on the planet.

 

Basics - YOU can do this, you have an 18 yr old daughter who will amaze you. She wiill be your rock, as my son was mine. You have to be strong, and you have to have a great attitude going in, because, you CAN do this.

Mask, after a time or 2, it wont bother you, just shut your eyes, think of something else, somewhere else, count the clicks, count sheep, dont think about the mask.

You will lose some hair, usually from ears down around the back - and it will thin a bit - make sure to wear a sunhat and sunblock

Chemo - make sure you take the anti nausea meds before and after, and if you dont want a PEG (as I didnt) stock up on a drink you can deal with, ensure smelt awful to me - strawberry boost was my go to. (still is) stock up on soup that'll slide down easy - stay away from anything citrus.

You can and will do this, stop panicing, do it one day at a time. Buy a little daily date book (I used it as well as my calendar on my phone) _ found one in Offce something? I didnt want a religious, or serious one, the front of mine is silvered, kinda reflective, and says, "Hello Gorgeous" - its what you need when you feel like death warmed over

 

As others said, I don't get why they only took one tonsil? thats dumb. Think of all the kids that routinely get their tonsils removed? (I was 23, omg it hurt)

Ask away, we have the answers.

Crazy question in the scheme of things and I feel stupid asking but the loosing of the hair does it grow back?? I am not a vain person but we all love our hair!! Is it better if we pull it back and away from the line of treatment? I have the notebook already but my isn’t has cool as hello gorgeous Lol I think I need a new one lol 

My husband brought me the Nurti Bullet so hoping to find some good recipes for drinks. I don’t want the PEG so going to do my best to avoid but in the end if I need it I will suck it up and get. 

‘The tonsil thing was a mess a think my ENT dropped the ball on that one but he is a great doctor and I can’t fault him. Just sucks I had to endure that two times after having my neck dissected. I went from no surgeries to having three in less then two months.

The mask I contacted my doctor and asked if I can take two Ativan that day but haven’t heard back seeing it’s the weekend. Or maybe they can prescribe something stronger. My fear is laying in that room with the dreadful mask on all alone. I’m a hold hands type person when I’m scared. But maybe they can play me some country music loudly lol 

My questions now are simple how does one get through this, even if it’s one side for me I wonder if the side affects will be not as strong....time will only tell.....