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Re: Permanent PEG? [Re: r0se] #199512
11-24-2019 11:06 AM
11-24-2019 11:06 AM
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Posts: 135
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Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
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I still have a swollen face in some areas, but it is going away. I massage my face twice a day to help it all drain away. Last week I wore make up as I realised I was starting to look like myself, and so I felt in the mood to have a play around.

Yep the drooling, the excess mucus/saliva. It is awful but I promise you it will get better, but well after you've finished rads. Mine is much better now, although I still have some, it is far less than what I had during rads.

I had sores in my throat and at the entrance to my throat. They are slowly going and I have now managed to drink some ensure and eat a yoghurt after a few weeks of not being able to drink/eat anything except tepid water. I also put a finger in my mouth to feel where some sores are. I was really surprised at how many I have in my mouth as some aren't visible.

Keeping your mouth clean will help the ulcers heal once rads is finished.

If you're managing 20,000 steps a day still then I'm well impressed. You doing maginificantly well anyway, but the additional steps are awesome. Don't beat yourself up if you need a break or rest day(or 2). You are awesome.


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 glossectomy neck dissection RFFR
33 doses RT 17th Sept '19
2x cispltin
Re: Permanent PEG? [Re: Dizz_zzey] #199530
11-28-2019 11:14 AM
11-28-2019 11:14 AM
Joined: Oct 2019
Posts: 31
Boston, MA
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r0se Offline OP
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r0se  Offline OP
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Joined: Oct 2019
Posts: 31
Boston, MA
Hi Dizz_zey and OCF crew,

Thank you so, so much for reaching out again. It is definitely a comfort to hear from you all and know what is coming. I'm surprised to hear that you can have sores in your throat/mouth that you didn't even know about! Alarming, haha. I will definitely watch out for that. I just finished my fourth week of radiation - definitely at the tepid water only stage. I still keep trying to cheat and find other liquids to drink. I tried to drink room temperature coffee yesterday and promptly "sputtered coughed". (As Diss_zey says). I'm going to keep trying the coffee because I'm not really sleeping at night. (Unless black, lukewarm coffee can go through the PEG?) I'm also keeping my head slightly elevated by using two pillows in a 45 degree angle configuration - it didn't help with the coughing or mucus that keeps me up, but I'm told that it should. I am also avoiding people as much as possible - I can't speak well and I'm still cough vomiting mucus. And I'm massaging my face twice a day to reduce the swelling. And doing jaw/cheek/mouth/swallowing exercises three times a day. Definitely willing to do anything that will help my body heal fast. Although, I know I won't heal that fast...still got 11 more sessions of rad and then weeks of healing...

R0se

PS DEFINITELY taking your advice and keeping my mouth very, very clean.

Re: Permanent PEG? [Re: r0se] #199532
11-28-2019 11:45 AM
11-28-2019 11:45 AM
Joined: Jun 2019
Posts: 135
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Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
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Joined: Jun 2019
Posts: 135
You're doing so well. 11 more to go then it's done.
As for lukewarm black coffee, I did, I've also put herbal teas and black tea through mine, I just made sure I flushed the tube through with some warm water to prevent staining.
With my sleep I found the sofa gave me the best position and support for my head. I still get much sleep at night, so daily naps helped me through.


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 glossectomy neck dissection RFFR
33 doses RT 17th Sept '19
2x cispltin
Re: Permanent PEG? [Re: Dizz_zzey] #199572
12-05-2019 09:20 PM
12-05-2019 09:20 PM
Joined: Oct 2019
Posts: 31
Boston, MA
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r0se Offline OP
Contributing Member (25+ posts)
r0se  Offline OP
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Joined: Oct 2019
Posts: 31
Boston, MA
Hi all,

SIX MORE RADIATION TREATMENTS TO GO! And then I am done. With treatment - not speech therapy, recovery, etc. My medical team says that I am doing a great job. I do have a new sore (?!) as of today - even though I've been doing an insane amount of saltwater rinses. And I am unable to swallow anything - it just feels impossible to even get water down. I do have a PEG, so my weight is stable. I'm not in any pain. My skin is red, but not that bad. I am not tired and still walking/running/biking. Still coughing/ spewing random mucus/unable to speak well, so I am staying away from humans as much as I can. I'm going to ask my speech therapist tomorrow if I should keep trying to at least swallow some water anyway, or let my body give up for awhile. Definitely looking forward to finishing treatment, but aware that there are some weeks to go before I begin to see marked improvements in mucus, coughing, etc.

Re: Permanent PEG? [Re: r0se] #199574
12-06-2019 02:36 AM
12-06-2019 02:36 AM
Joined: Jun 2019
Posts: 135
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Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Senior Member (100+ posts)
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Joined: Jun 2019
Posts: 135
You are doing so well. Those last 6 will fly by. If you can't swallow water, try to do some dry swallows to keep your swallow strong. If you can sip even just a teaspoon of water then that'll be amazing.
I'm so impressed that you're still running. That's so good smile
Do you have some cream fir your neck? Aftersun or something with aloe vera? I kept mine in the fridge as it was so soothing when I put it on after rads.

We're all rooting for you!!


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 glossectomy neck dissection RFFR
33 doses RT 17th Sept '19
2x cispltin
Re: Permanent PEG? [Re: r0se] #199576
12-06-2019 09:17 AM
12-06-2019 09:17 AM
Joined: Jun 2007
Posts: 10,454
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,454
PA
Sounds like you have been doing very well!!! Pay close attention to your swallowing!!! Its amazing how quickly the body will forget how to function properly when not used as it had been before. A few days of not swallowing anything can make those muscles forget how they work together. Even taking small sips here and there every day will keep those muscles working. Its a good idea to discuss swallowing sips of water every day with your medical team.

This last week is usually the worst week of rads for most patients. The first few after finishing arent much different but its all part of the process to becoming cancer free. Focus on whats within your control, especially your intake. The better you do with daily calories and water, the easier everything will be.

Best wishes with your continued recovery!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: Permanent PEG? [Re: ChristineB] #199616
12-19-2019 01:36 PM
12-19-2019 01:36 PM
Joined: Oct 2019
Posts: 31
Boston, MA
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r0se Offline OP
Contributing Member (25+ posts)
r0se  Offline OP
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Joined: Oct 2019
Posts: 31
Boston, MA
Hi all,

Just posting an update. I finished my treatments on Monday. I am feeling really, really tired. I have alot of mucus and choked on it Tuesday. I have alot of sores. I have a feeding tube, so my weight is stable. I know that I won't feel better for a month or so. That said, I don't even know what better will be. I don't have a tongue now. I lost my job. I have alot of fear and anxiety for the future. I don't want to live the rest of my life with a feeding tube. And have people judge me for my inability to speak clearly because I don't have a tongue.

R0se

Re: Permanent PEG? [Re: r0se] #199617
12-19-2019 02:15 PM
12-19-2019 02:15 PM
Joined: Jun 2007
Posts: 10,454
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Joined: Jun 2007
Posts: 10,454
PA
Rose, congrats on completing your treatments!!! Not at all easy!!!

Right now is the hardest time for almost everyone who has been thru rads. Its cumulative where the further you get into your treatments, the harder everything becomes. This can put a tremendous amount of stress on patients and caregivers alike, especially when they are not progressing as quickly as they think they should. Im sure you arent feeling very well at this time and unfortunately, to be completely honest... a full recovery for almost everyone who's been thru rads is much more than one month! In fact, many doctors have said its one month of recovery for every week of rads. The best thing I can tell you is sleep when you are tired. Rads can wipe you out!!! Even though rads ended, its still actively working which is why you are so tired. You've been thru ALOT!!!

Its best to focus only on what is within your control... your intake and pain management. For at least the first year after finishing rads, you need to continue taking in 2500 calories and 48-64 oz of water... every single day!!! Dont fret!!! Your body is working OT trying to rebuild itself after the rads caused damage. You have a long way to go but very soon you will get up one morning and feel almost ok again... its going to be a surprise around 2-3 weeks post rads. Thats what we call around here as .... crawling out of the tunnel. . Its the tipping point where you can actually notice an improvement instead of feeling horrible 24/7. A complete recovery from everything you have been thru is 2 years. Yes, it really does take 2 years to get back to the best health thats closest to how you were before OC, treatments and recovery. But.. that wayyyy down the road, nothing you should concern yourself with right now. Focus on the positive and in time you will feel a little better. I know its not easy and wondering what the future holds can bring on unneeded stress and worry. No one ever has worried themselves out of any situation or had a test result changed from it. All worrying does right now is to make everything so much harder. All the negative issues we all tend to think about when we are down and out does not do anything at all to help any of us. If you havent already done so, I suggest asking about a therapist from your doctor or treatment facility so you can talk to a professional who understands what cancer patients go thru. It cant hurt, many patients also need anxiety meds on a temporary basis to help them get thru the whole ordeal that can be overwhelming to many.

You're almost at the point where you will be able to see your improvements and feel more positive about your situation. I do understand everything you're dealing with and I know its NOT easy at all with so many major changes happening in such a short time. We can never fully prepare ourselves for a serious illness or an unexpected job loss... but we can change how much we dwell on it and limit the amount of time spent on negative "what if" ways of thinking. You never know what the future holds, it really could be something spectacular!!! You cant predict what other changes may happen. Everything is never 100% good or bad... theres always a little of each but it all depends on how you view it. For me, I was devastated when I realized my health was not within my control and my idealistic retirement I planned for my entire life would never happen all from getting OC. I lost my 13 year career, pension, and a huge amount of "stuff" and faced (still am a work in progress 12+ years later) what I considered a gigantic uphill battle only to never succeed at another job or any other thing I previously would have excelled at anything I attempted. BUT!!! As unbelievable as it sounds, my after OC life is dramatically different and even with all my limitations, its actually a better life, more satisfying to help others instead of just writing a charity a check. When I meet people who didnt know I was disfigured (its right there on my face for the world to see), they're usually very surprised by my happy disposition and how positive I am. When OC took something away that can never be replaced... my looks, which I never knew carried so much weight until I didnt have it any longer. The world is so fickle and everything/everyone is constantly being judged by how they look. But, when looking at me they see someone who is disfigured but the personality does NOT match the looks. During my 2 month hospitalization, when I didnt recognize myself in the mirror I allowed myself one day to process the shock of losing my looks seemingly overnight. I went into the hospital to removed 1/2 of my lower jaw but with my complications it failed and when I woke up 3 weeks later I was someone else. Please try to think of your new voice being different, where only if you decide to speak will anyone ever hear your vocal challenges. Im not as lucky as you are, for me they can clearly see I have some serious health issues and I dont even need to say a single word, its right there on my face so its unavoidable. See... it all depends on your viewpoint smile Im pretty sure you hadnt considered only when you speak would anyone know about your health issues. Its a glass half full way of thinking about your situation. Ive had many close friends over the years who were unable to speak. Try an app called SpeakIt to be your voice by simply typing what you want to say. My friend used it all the time and it was!!! We are always our own worst critics!! Next time you see your doc, ask about the availability of a speech therapist. They've worked wonders on many who felt just like you with being very self conscious of their speech. In time, everything will improve. Unfortunately recovery never will happen as quickly as how we think it should go.

Hang in there and best wishes with everything!!!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: Permanent PEG? [Re: r0se] #199618
12-20-2019 11:34 AM
12-20-2019 11:34 AM
Joined: Jun 2019
Posts: 135
D
Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Senior Member (100+ posts)
D

Joined: Jun 2019
Posts: 135
Hey Rose,

Trust us all when we say the mucus will eventually go. I'm just 7 weeks post rads and the mucus has reduced drastically. I get moments of dry mouth, so carry around a bottle of water everywhere I go.

Even without a tongue, you will learn to eat. I am currently learning. I'm like a child when my husband has dinner as I want to try things. It's brilliant. You will get there. As Christine said, when your body wants to sleep, get some sleep. It really helps. Week 3 post rads is the week when you feel different, a little bit better. There are times when you will take a step back in recovery, this is normal as your body adjusts. It won't last for long.

With your speech, you will find there are certain letters and words you will never be able to pronounce. For example I can't say DOG as I can't say pronounce 'D' or 'G', but I'm having fun finding replacement words. Dog is now 'woofer' or 'woof woof', people understand me then. Also speaking slower than you would normally speak helps with your prounciation. Practise your alphabet or saying words out loud, even to singing to your favourite songs will help.

You've got through surgery and radiotherapy, neither of which are small feats, they are huge! You are amazing to have done that. Having no tongue isn't the end, it's a new chapter of your life and you will come through this dark patch because you are a fighter.


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 glossectomy neck dissection RFFR
33 doses RT 17th Sept '19
2x cispltin
Re: Permanent PEG? [Re: Dizz_zzey] #199646
12-30-2019 10:46 AM
12-30-2019 10:46 AM
Joined: Oct 2019
Posts: 31
Boston, MA
R
r0se Offline OP
Contributing Member (25+ posts)
r0se  Offline OP
Contributing Member (25+ posts)
R

Joined: Oct 2019
Posts: 31
Boston, MA
Hi all,

Thank you for your kind words of encouragement. Today is two weeks post rad. My mouth sores are almost all gone and the swelling in my face has really improved. I am feeling less tired, but I am still waking up one or two times in the night to give myself more guaifenesin and robotussin with codeine to suppress the cough and mucus. I'm still sleeping on the couch. I walk everyday, but I don't do much else because of the mucus. Yoga and mucus/running and mucus don't mix.

I keep trying to swallow, but nothing is going down. I was able to swallow the middle of a ravioli a few days ago, but yesterday I failed to get any cream of mushroom soup down. I'm going to try coffee or lukewarm hot chocolate later today. I can speak a bit, but it's very strained and gargled. It hurts to talk and swallow, honestly. I try to eat as much as I can through my PEG, but my stomach physically can't take more than 4 or 5 cans. I've been feeling queasy even with that amount.

I'm feeling pressure from my caregiver to get better (ie be more active and leave the house more), and I want to be better, but I know that I'm not going to immediately heal. I feel like it is my fault, but I can't control how my body reacts or heals. I'm also afraid to be in public, which I think frustrates my caregiver. However, I can't talk and I'm so full of mucus - so I feel really uncomfortable in public. It's not that I don't want to heal, but like I said, I can't control the pace of my healing or where I feel most comfortable at different stages of the process.

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