| Joined: Jun 2019 Posts: 244 Likes: 2 "OCF across the pond" Gold Member (200+ posts) | "OCF across the pond" Gold Member (200+ posts) Joined: Jun 2019 Posts: 244 Likes: 2 | Hi Thankful Girl,
I'll ask if I can bring a CD in, that would be fantastic distraction.
Why did you use a nasal inhaler before each treatment? What did that help/prevent?
I'm already on an anti-anxiety tablet as it's also a pain relief med too. So hopefully that'll be enough, if not I'll speak to my Doctor.
Great shout about the cushion under the knees, I'll ask the team tomorrow (when they fit me for the mask).
I cannot wait for it to be over as it should finish on the week of my 40th birthday, which means a double celebration. I think I too would sink to my knees after the last session. It sounds so intense. I might even need chemo added to the sessions once a week. If I do then I do.
Have a great day.
F 39 x-smoker no alcohol 05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide Pembro pre & post surgery RIG Glossectomy ND RFFR 08/13/19 RT x33 2x cispltin So far, no evidence of disease Now an author of a recipe book for mouth cancer patients
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Hi Barry,
I saw in one of the posts below yours that someone brings a CD into radiation. That’s a really good idea and the radiation technician will allow you to do that.
Please do make sure that you have cream (Lubriderm is fine) to put on your neck you when you come out of radiation, but NOT BEFORE. If you think of a fried egg in hot oil, you’ll see what will happen to your skin if you put cream on your neck before radiation. It is, however, very very helpful that you put cream on your skin when you come out of radiation. It keeps the skin moist and there’s less chance of sores developing. Do pay particular attention to the folds in the skin, don’t miss those spots.
We also did saline soaks several times a day. It’s simple to do. Put saline (store bought) on a j-cloth and put it on the areas which are red after radiation for maybe 5-10 minutes. Then dab the area dry, put Lubriderm on and cover the area with a non-stick dressing. The non-stick dressing is available from the pharmacy at the hospital. If not, you can try Shoppers Home Health (I noticed the other day that the one near my house is now re-named Wellness, same thing).
Do keep on doing your swallowing exercises. You want to work your swallowing muscles as much as you can. Our RO suggests even dry swallows will be helpful.
I’m here to help, so if you have any questions, please ask or you can send me a pm.
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. | | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | Hey there! Just now responding to your first post because, well, it took me back to how I first felt when I first learned I had cancer. (The first time.) We didn't even know it was a possibility, actually. I had a sore that wouldn't heal; several doctors did their thing and it still didn't heal, and so the ENT said, "You know, some sores just don't heal till you cut them out and give them a fresh start." As this was several months in, we figured it was worth a try, and agreed. Came out of that surgery (which I guess we could rename a really big biopsy) with a diagnosis of cancer. Except he got enough of it that it was also the cancer removal surgery (I had a lot less tongue after that!) and he'd worked super-hard to get clear margins. I think he must have suspected, but didn't want to scare us until he had to. The scary stuff came after ... talking to all the specialist. We were sent to speak to a medical oncologist (the chemo guy) who gave us all the worst-case-scenario terrors from his perspective, and I think even a radiation oncologist who scared us with all his stuff. And back to the ENT who wanted to to a neck dissection on that side to check lymph nodes, even though the scans were showing clear ... just to make sure they'd really gotten it all. This took place over several months, because he really DID do a thorough surgery ... my worries got me to a doctor first in February of that year, the surgery was May, and the neck dissection didn't even happen till August. NONE of the other treatments the other doctors tried to terrify me with happened at all. They were telling me what MIGHT happen, not what WOULD happen for my treatment plan. That round, I got lucky. (Though I still rather regretted the neck dissection.) However, by December I had a recurrence. So all that scary information turned out to be useful. It also helped weed out which doctors I wanted to see. The ones who said "It has to be this way, and this way only" and had no compassion at all ... I struck them off my list right away. I didn't care what other folks thought their success rates were (unless they had firsthand experience, not just gossip), because I have fairly complex medical issues as it is, and I require a doctor who will listen. We'd already winnowed out several of those that wouldn't! And you know what? That stuff you think you couldn't possibly bear to go through, the first time you learn about it? It's amazing how your mind can change when this stuff comes BACK to scare you. Yes, it totally stinks to have to go through it at all. It's horrid, and there's not a nice word in the dictionary to describe it, except for at the end when you can say it's "over!". But you're HERE to go through it, and you've got lots of folks who will help cheer you on, tell you when you are allowed to fuss more (yes, it's okay to ask for more pain meds if you need them, stuff like that!), remind you to ask for help and second opinions, and all those other things that we need reminding it's okay to do. And like someone else said ... The Cancer WILL kill you, eventually (and it will hurt way worse than the treatments). The treatments feel like they're trying their darnedest, but they are also trying to save your life. You're the one who has to decide if that life is worth saving. Me, I had two young kids (now two teenagers). Being there for them seemed the right choice. I'm not the mom they would have had without cancer, and we all grieve that ... but it's better than no mom at all. Yes, you're allowed to grieve the changes you go through. But YOU are still worth it.
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
| | | | Joined: Aug 2019 Posts: 21 Likes: 2 Member | Member Joined: Aug 2019 Posts: 21 Likes: 2 | Hey There Dizz, After many radiation treatments my sinuses were getting clogged and the nasal spray helped open them up so I could breath easier with that mask on. Not being able to breath is bad enough, but add the mask and, for me anyway, it was a recipe for a full blown panic attack. Another thing that helped, which is probably done for all patients, but they gave me a foam ring to hang onto with both hands over my stomach during treatment. It made laying on that steel slab much more comfortable along with a warm hospital blanket. Every little thing helps. I hope they'll let you bring in your own music. Most treatments last about 3 to 4 songs, depending on which ones I listened to. Lynyrd Skynyrd has some good long ones. Oh, and one of my favorite artists is Diana Krall. I've never really been in to Jazz, but her music is fantastic. She has a song called "Peel me a grape" that lasts almost the whole treatment. Believe it or not, I found myself wishing the treatment wasn't over a couple of times just so I could finish listening to the song that was playing. LOL!!! That was when I knew I had accepted the reality of this, in my mind, barbaric treatment. As I said earlier, one thing that truly helped me besides the music was just believing every time they locked the mask down that it was a good thing and any cancer that may've been left after surgery was being zapped away forever. I had two rounds of chemo. Fortunately the anti nausea meds really worked. Besides lethargy, I hardly had any side effects. Oh yeah, one more thing. When they fitted me for my mask, they also fitted me for a mouth guard, but they did not do a very good job of molding the guard to my teeth. Be sure the guard is as comfortable as possible for your bite. You'll do great! It awesome that you'll have two things to celebrate when this is over. Take Care ~ Thankful Girl | | |
Forums23 Topics18,209 Posts197,040 Members13,222 | Most Online614 Jul 29th, 2024 | | | |