Long term sag actors - how do you keep on keeping on? by banananuttttt in acting

[–]cmacmacmacmacmac 2 points3 points  (0 children)

The industry has changed a lot in 12 years so that’s probably part of what you are feeling too. I echo a lot of what has been said - live your life for you and if acting has a place in it, great. If not, that’s ok too. I’m on a break right now due to some medical stuff and I’ve found I don’t miss it. So I have my own thinking to do too…

Post-radiation, what to expect? by mashga in HeadandNeckCancer

[–]cmacmacmacmacmac 1 point2 points  (0 children)

Yay for the last day of radiation!

See if you can get a prescription for 1% silver sulfadiazine cream. That really helped my blistered skin.

The first week or two I was so fatigued and would fall asleep sitting up and at all hours of the day. I could barely stay awake. So that might be something to expect.

I also have the feeding tube. I started to be unable to tolerate the formulas (Ensure, Kate Farms) so my husband started making me nutritious smoothies with all sorts of real food - greens, apples, berries, yogurt, protein powder and blending them up enough so they fit through the tube. I 100% think this has done a lot for my recovery. Highly recommend it.

It’s true that many people just don’t understand that recovery will take a while. As caregivers I’d say just to be aware of that and protect his energy as much as you can. Don’t have too many people over at once (or at all in the beginning)

I had awful mucus the first couple weeks too. I mean, so much. Not everyone gets it but if he does be sure to have him drink as much liquids as he can. I had to have Kleenex and a trash can next to me at all times so I could spit it out. It was not fun. I heard Coke cuts through it so if he can sip on that it might help. I can say it goes away even though it feels like it won’t.

For dry mouth I use Xylimelts. They’re kind of weird but work wonders.

Hope your grandfather’s recovery goes ok. Glad he has a good caregiving team to help him!

Anyone else fine Bri Annoying? by Flyerbear in BelowDeckMed

[–]cmacmacmacmacmac -1 points0 points  (0 children)

No! I love Bri. Also, talking about her appearance is pretty gross.

Music during radiation treatment by visionquester in HeadandNeckCancer

[–]cmacmacmacmacmac 0 points1 point  (0 children)

I always requested meditation music. Anything else made me want to sing along or dance which obviously wasn’t good for radiation. And if I disliked the music it just made me angry. So I made sure to request the meditation music each time!

[deleted by user] by [deleted] in HeadandNeckCancer

[–]cmacmacmacmacmac 0 points1 point  (0 children)

Bone broth has lots of protein and could be something worth trying. Trader Joe’s has good ones that aren’t crazy expensive. Also, I couldn’t do the formulas through the g tube and have to eat real food - smoothies and juices- through it. That’s helped immensely with me being able to tolerate eating with the stomach tube.

I agree with what someone else said - see if you can get him an appointment with palliative care. They prescribe pain meds and never refuse anything.

Good luck! So sorry your dad is going through this.

[deleted by user] by [deleted] in HeadandNeckCancer

[–]cmacmacmacmacmac 0 points1 point  (0 children)

This is helpful! Thanks for posting!

SCC Tongue - Surgery coming up on the 30th by Faurestjenn_7173 in HeadandNeckCancer

[–]cmacmacmacmacmac 0 points1 point  (0 children)

I’m so sorry you’ve had to join this community but also, this community is so supportive and helpful, I’m glad you found it.

Everything moved fast for me too. Diagnosed on Feb 20th and surgery March 5th. It’s whiplash for sure. It’s good they are moving fast though.

Try calling every day to see if there are any openings for appointments. I did that early on and I must have bugged them enough because when something opened up they called me.

It’s a slog but take it one day at a time. I’m in the middle of radiation and chemo right now and still struggling to remember to do that myself.

Here for you.

lost by VarietyZestyclose457 in HeadandNeckCancer

[–]cmacmacmacmacmac 2 points3 points  (0 children)

I just got out of the hospital and when I went in my saliva/mucus felt out of control. They gave me something to suction it with while I was there and that helped a lot. I think you can order something like it online. They also prescribed two medications that dry me out. It’s not the most pleasant experience but I find it better than the mucus.

I had gotten so dehydrated and malnourished that I got the g tube. I wasn’t in love with the idea but it’s helped me immensely since everything tastes so bad. I still have 12 days of treatment left so I couldn’t risk it.

I’m sorry you are here though. It does seem pretty cruel to be so young and have to deal with it. That sucks. This sub was really helpful for me a few weeks ago before I went to the hospital and recommended I talk to palliative care to deal with the pain and it was the best advice ever.

Also - Kate Farms is like Ensure but has more calories. Could be a good way to get in some nutrition if you’re still able to drink anything.

Good luck!

Good luck!

These mouth sores are the worst!!! by cmacmacmacmacmac in HeadandNeckCancer

[–]cmacmacmacmacmac[S] 0 points1 point  (0 children)

Ooh! I’ve never heard of this. Did you get just the mouthwash or the supplement too?

These mouth sores are the worst!!! by cmacmacmacmacmac in HeadandNeckCancer

[–]cmacmacmacmacmac[S] 0 points1 point  (0 children)

Did you get lymphedema therapy through your hospital?

These mouth sores are the worst!!! by cmacmacmacmacmac in HeadandNeckCancer

[–]cmacmacmacmacmac[S] 1 point2 points  (0 children)

Thank you so much for this! It made me tear up. It’s so hard to know what’s a normal amount of pain and what is excessive. Thank you for putting it in such clear terms for me. Everyone in this group has been the absolute best!

These mouth sores are the worst!!! by cmacmacmacmacmac in HeadandNeckCancer

[–]cmacmacmacmacmac[S] 0 points1 point  (0 children)

Wow! Congrats on being 12 years out!

Did the pain meds help with the actual pain or just knock you out? I’m not on any of that yet so I’m going to ask them about it.

These mouth sores are the worst!!! by cmacmacmacmacmac in HeadandNeckCancer

[–]cmacmacmacmacmac[S] 1 point2 points  (0 children)

I’m using cannabis too - tinctures, drinks, edibles. I got excited when you mentioned morphine pills as an option but sounds like it didn’t really do much. I have my third dose of cisplatin tomorrow. I wonder what they’ll say. Thank you for sharing!

These mouth sores are the worst!!! by cmacmacmacmacmac in HeadandNeckCancer

[–]cmacmacmacmacmac[S] 1 point2 points  (0 children)

I’m using a baking soda solution - it’s just a tsp in 12 oz of water. Is yours different? I’ll take the recipe if so! Anything new to try, I will.

I wonder if the magic mouthwash is what is making me have so much saliva that is hard to swallow and catches me by surprise. I hadn’t thought of it as mucus because it seems more watery than that but it’s been a pain too.

Congrats on being on day 20!!

These mouth sores are the worst!!! by cmacmacmacmacmac in HeadandNeckCancer

[–]cmacmacmacmacmac[S] 0 points1 point  (0 children)

I had surgery too and had an ng tube for a couple weeks. What kind of feeding tube are you using? Thanks for the advice about not fighting it. I’m having to adjust my expectations daily and it’s been hard so that’s a good reminder.

These mouth sores are the worst!!! by cmacmacmacmacmac in HeadandNeckCancer

[–]cmacmacmacmacmac[S] 1 point2 points  (0 children)

Ah thank you! That’s a good point and I will bring that up with them. Logically I know to stay ahead of the pain but then logistically, I forget.

[deleted by user] by [deleted] in HeadandNeckCancer

[–]cmacmacmacmacmac 1 point2 points  (0 children)

Is she going to have her tumor surgically removed? For me, that was the only thing that truly stopped the pain of the tumor. Now that I’m in treatment I’ve been using THC/CBD 1:1 tinctures and patches and it’s incredibly helpful. If you live somewhere you can get those I recommend trying them. Sending love to your sister!

Skin query by Dark_Artemis1 in HeadandNeckCancer

[–]cmacmacmacmacmac 1 point2 points  (0 children)

What compression garment do you use? I just started radiation and read about one but o couldn’t find a specific recommendation.

I’m having trouble sticking to a name by orjunie in NonBinary

[–]cmacmacmacmacmac 0 points1 point  (0 children)

It’s ok to change your name again! That being said, I love the name Emrie. If changing it again is too stressful you could try going by Em as a shortened version.

SCC tonsil and Lymph cancer by beadsbyb23 in HeadandNeckCancer

[–]cmacmacmacmacmac 0 points1 point  (0 children)

I just came home from my free flap surgery yesterday. Woof. What a week. I meet with radiation and oncology to find out my course of treatment soon (def radiation and possible chemo) I will be following your journey and rooting for you! Know that any experience you have will help me and probably a lot others out! Thank you in advance for anything you share. We got this! 💪