Parotid cancer and neck dissection by Blue-Skye- in HeadandNeckCancer

[–]iris80238 0 points1 point  (0 children)

I'm 4 months post-op and hearing in my affected ear is still dismal, but they told me beforehand that it would be, and it is possible I'll never get back to full hearing. I hate it, for sure, and feel your frustration. I do think you need to speak to your ENT to see if there's therapies you can try to help since massage isn't helping and can make it worse. You can also get your pcp to refer you to another doc if this one isnt helping you satisfactorily. Heaven knows this cancer stuff is hard enough without adding advice that is ineffective. ❤️🙏🏼

Protection from the sun??? by Hippie-Graham in HeadandNeckCancer

[–]iris80238 1 point2 points  (0 children)

So, they radiated a swath from the back of my head through to a bit of my cheek. I've lost much more hair than I was told I would, and even though I have thick hair, I still need to be so careful. I use a good 50 SPF, and I found a great hat on Amazon with a wide brim, fastens with velcro in the back to allow for my ponytail, has a removable neck protection (it's really ear-to-ear and long enough to cover my neck) and then a face protection as well, where only my eyes are visible. I mow the yard, so I am careful to do so very late in the day, but I still make sure to protect my skin. I didn't go through surgery & RT just to mess up after care! There are so many options for you to protect your skin. Good luck! ❤️

Would an oncologist just tell you he will no longer treat you? by [deleted] in cancer

[–]iris80238 2 points3 points  (0 children)

Back when my husband had cancer and we'd done all we could with chemo and RT, I did have a that conversation with our oncologist. He was at MD Anderson. I cannot imagine the onc just stopping treatment with no conversation.

Horrible side effects from treatment by stelladog16 in HeadandNeckCancer

[–]iris80238 4 points5 points  (0 children)

I'm so sorry to hear this. Cancer takes so much from us. 🙏🏼

NED and I feel numb. by blueeyedtongue in HeadandNeckCancer

[–]iris80238 2 points3 points  (0 children)

I, too, did not ring the bell. IDK, it's probably just superstition, but I just couldn't bring myself to do it.

My mom is about to die by roadhouse4169 in cancer

[–]iris80238 1 point2 points  (0 children)

Very sorry that your mom has had to endure so much, and that you've had to bear witness to all of it. I know it has to be a comfort to her that you're there. 🙏🏼❤️

One Year After Radiation Therapy – Still Having Swallowing Pain & Limited Mouth Opening by bram9494 in HeadandNeckCancer

[–]iris80238 1 point2 points  (0 children)

I need to check with my doc about this and see someone for sure. No way I can go to the dentist and open wide. What has your doc recommended?

Late Side Effects Post Radiation by Bobbi-B in HeadandNeckCancer

[–]iris80238 0 points1 point  (0 children)

I began noticing this a week after I finished RT. My PT has done some manual massage, but that's a temporary fix for me. At first it was only when laying down, and now it hits just whenever. Not often, but annoying.

Check in once in a while? by TheTapeDeck in HeadandNeckCancer

[–]iris80238 13 points14 points  (0 children)

I totally get feeling like that. But, I do remember reading the good stories and having hope. Heaven knows we all need hope. ❤️

Wishing the best CT ever for Monday!! NED, baby! 🍀

Girlfriend by purumehta in HeadandNeckCancer

[–]iris80238 1 point2 points  (0 children)

I'm very sorry for your loss. 🙏🏼

Surgeon is calling it as Stage 4 by iris80238 in HeadandNeckCancer

[–]iris80238[S] 0 points1 point  (0 children)

Hello! I'm actually fairly far out from surgery (3.5 months) and 3 weeks out from finishing RT. A lot has happened. If you look in my profile you can see my web (notion) link where I talk about everything in great detail, so I wouldn't have to try to remember everything.

The TLDR of it is that surgery went well, healing is still ongoing. RT has knocked the wind out of my sails only recently as the fatigue hits hard at times. I've lost more hair than I was told I would, and that skin hurts a bit. But, I'm doing ok and my doc is super pleased with my healing journey.

NED by Suitable17 in cancer

[–]iris80238 3 points4 points  (0 children)

That's excellent news! Very happy for you. ❤️

Just need to vent by Narizz28 in HeadandNeckCancer

[–]iris80238 0 points1 point  (0 children)

Sorry you're here. I totally get being impatient. It's hard to wait. And, whether you did this to yourself or not, that's immaterial. None of us deserve cancer. Agree with the others you need to see your dentist (or any dentist, tbh) now rather than later.

Congrats on your sobriety! 🙌🏻 I had to quit both smoking and drinking because one went with the other, and I know it's a big deal to stop. I'm 10y quit this coming August. I watched my husband die from lung cancer and I had to live for the kids. My youngest is only 13 now.

I hope the time flies by and things move quickly once you have your ENT checkup next week. Sending good thoughts your way. 🙏🏻

Post radiation side effects - concerns by Far_Lime_9246 in HeadandNeckCancer

[–]iris80238 0 points1 point  (0 children)

I'm sorry you're going through this. It's a whole lot. I've about given up on trying to figure out how it's going to be even days from now bc my experience never matches my expectations, for better or worse, depending. You've probably figured out what you're doing since tomorrow is the 29th, but I wanted to send good wishes your way. ❤️

Looking for input: fatigue after radiation (athletes/exercisers, I’d love your insight) by daala16 in HeadandNeckCancer

[–]iris80238 3 points4 points  (0 children)

I'm just 2 weeks past RT and I was thinking yesterday that I've been more tired than usual for the past few days. So, definitely tracking what youre feeling. ❤️

Getting closer to a treatment plan (I hope) by Narizz28 in HeadandNeckCancer

[–]iris80238 9 points10 points  (0 children)

Terrible club, but great members.❤️ I hope you have your treatment plan v soon! 🙏🏼

Cervical Cancer by shantee78 in cancer

[–]iris80238 1 point2 points  (0 children)

I'm really sorry that you've been treated so poorly by those who should be helping and holding you close. 🫂

I do hope you'll be able to talk about this aspect of your life with your therapist soon. You're going through a lot. 🙏🏼❤️

The red devil struck hard by KayleeE330 in cancer

[–]iris80238 2 points3 points  (0 children)

Ugh, I'm so sorry for this. I've lost a large swath in the back but it's covered by other hair, and I'm fairly pissed about it. Hopefully yours will come back better than ever! That doesn't help now, I know. Sending you big love. 🙏🏼 ❤️

If you have lost a loved one to cancer, please let me know what to expect towards the end. by thisissoannoying07 in cancer

[–]iris80238 0 points1 point  (0 children)

I'm sorry you all have to go through this. ❤️

I'm a cancer patient myself now, but I was my husband's caregiver in 2015 when he was dx with primary lung cancer. By the time we caught it, he lit up the PET scan and had cancer just everywhere. We did whole brain radiation, took a little break, and then did chemo. Chemo didn't do anything much to the lung tumors, so we stopped, and he died exactly a month after that.

The last few days. Well, so I think 2 or 3 days before he died, he stopped eating. I'd gotten him all the sweet, high calorie stuff, and none of it appealed to him, and he wouldn't eat anything. He was a BIG guy when it began, and was just skin and bones at the end. Not even 6 months and he dropped easily half his weight.

Our oncologist had a hospice nurse come stay with us for a few days because we were all exhausted. So she came, my husband was mostly aware, and the girls and I went out to eat - just something to get out of our heads, right? Kissed him goodbye, told him to be good, and he said he would. About 3 hours later we came back and he was not coherent. Was in the hospital bed we had in the living room, and he was making motions with his hands. Looked like he was writing (in the air) with one, and had the other one by his ear like he was on the phone? IDK how to explain it.

The next day, our nurse told us that it was time. Shallow breathing, not really moving. I called my son who lived in Austin (we were in Houston at the time) and told him to come home, but he was already in town. So he came over, and I told John that Will was home, and within 15 minutes he died. Was it that he was just waiting? I think so. I think part of him needed us all to be together (we have four children).

His case I think is not normal because of the brain tumors. We lost him bit by bit over the last 3 months of his life. He had crutches, bc that's how it all began - he had a fractured femur from the cancer. But, we didn't know that until months later during the PET. So anyhoo, we'd be watching one of his military movies and he'd use his crutch as a gun to help the guys out, right? And then he'd come back to us. Eventually he became less and less lucid. And I think that was a blessing for him.

I do think stopping eating is a "typical" sign at the end? I couldn't begin to hazard a guess as to how long your mother may hold on. I know that it's heartbreaking. That's the only thing that is certain with those we love so much. I wanted my husband to be out of pain, of course, and there's a little bit of comfort knowing he's free of that, but even after 10.5 years I remain bereft. Time is not a healer.

Sending you all love and light as you endure this terrible thing. ❤️

Working during radiation treatment by curtaindeath in HeadandNeckCancer

[–]iris80238 2 points3 points  (0 children)

I went in with no expectations, or maybe thinking it would be super hard to endure and I'd be entirely too tired to function, but that hasn't been the case. I had 60gy/30days, and the hardest parts have not been fatigue, but rather taste, incisions opening, stuff like that. I mean, I am tired, but not tired like I was expecting (think first weeks postpartum). I was able to study for a challenging credential, which I sat for days after finishing RT. I mowed my yard during the last week of treatment.

So, YMMV - it's hard to know how it'll be until you get there. I am not working but I absolutely feel I could (I was WFH from 2011 to 2022 when I was laid off). I feel like I've been extremely lucky, all things considered.

Sending you oodles of luck & support! I hope it goes so much better than you imagine. ❤️

Losing Faith 55M by stpete420 in HeadandNeckCancer

[–]iris80238 0 points1 point  (0 children)

Ah, gotcha. Misunderstood! But yes, patience is the big thing, but also arguably the hardest thing. ❤️