Hi All,

I just wanted to vent a little and see if anyone has any advice! I have returned to work recently, and have really been feeling down about my speech. I have been through a lot, and I am very grateful to be alive, but I am so self-conscious about my speech and just don't know what to do. I am in a client-service industry, so I am speaking to and meeting different people all the time. I know when I am talking, even if people are understanding me, they are sitting there wondering what is wrong with my speech. I don't mind at all telling people that I had cancer, but it is always awkward to bring up and I haven't quite mastered that. I usually say something along the lines of "sorry if you have any trouble understanding me, I had oral surgery recently", but then people usually always ask what happened and I have to go into the whole story. I had slightly over half of my tongue removed and reconstructed, and I was just wondering if others with my surgery also feel like this, and if it ever gets better. I went to speech therapy for about 3 months after radiation, but I really feel like I hit a plateau and there was not much more that could be done. It has been 7 months since surgery, and I am just wondering if this is as good as it will get? Assuming the cancer doesn't come back, am I going to have to be explaining to everyone I meet for the next 60 years why I speak like this?

I will be meeting with my plastic surgeon in a few weeks, and I am hoping to see if there is anything else he can do to help me improve. Don't get my wrong, I am usually pretty understandable, but if I am in a loud place, or there is background noise, or I have words that I can't pronounce (typically ones that have a lot of "L's" or "Th's"), people have difficulty understanding me and the anxiety sets in.

Any advice would be greatly appreciated!

Thanks,
Emily

Emily,
I still have some issues with my speech and I am nearly three years out. My speech is very good some days, and others not so much. I have the most problems talking on the phone. My family and friends say that they don't have trouble understanding me, but I am self-conscious about it. It's almost if I have a lisp. I notice that when I am tired and have been talking more than usual it is worse. Before I retired I was the Director of a small public library system, and my position required me to speak to groups from time to time. We also had a library levy on the ballot and that required me to talk to a lot of groups as well. I find that drinking a lot of water does help. You are not too far out of treatment, so it will get better with time.

Agreed - I find my speech can be affected by certain foods and the way I sleep as well. Though most days it's pretty good. Hugs you'll get better once your old tongue builds up some muscles...

A speech therapist can help you with this. Ive seen many people go to one of them and it has helped them tremendously.

As far as explanations, you dont own anybody anything. Im sure you are being self conscious and your speech is alot better than you think. You dont need to disclose your medical history to anyone, especially at your job. I wouldnt say a word if it were me. Speaking used to be what I did for a living but I wasnt able to do my old job anymore after my 3rd round of OC. This was mainly due to my mind not being quick enough to keep up with everything, my speech was secondary to why I left my job.

If you must say something, make it very brief and then drop it by talking about another topic. If anyone questions you then just politely say you prefer not to discuss the details. Some insensitive people still may question you then just say "its not anything to do with _____ , which is more important right now"(whatever your topic of discussion was). What you said was perfect about having oral surgery recently and then just move on to whatever you needed to talk about.

Emily

I feel for you. I was extremely articulate before the surgery, so much so that "normal" people seemed to me to be slow and plodding in their speech. Three months of speech therapy was a good start, but are you still doing the speech exercises and word lists at home? A few refresher sessions with a good speech therapist really works wonders.
Still, there are limits on what a butchered tongue can do. My surgeon & my prosthodontist both tell me that there will be zero "muscle growth" on my tongue since the wrist flap skin transplant had no muscle and they had to cut out the muscular base of tongue to get rid of my cancer. But with practice my speech has gotten better for person to person. I am still very very hard to understand on the phone and cannot get any voice recognition prompts on automated systems to work.

Because I am so self conscious that I sound like I had a brain damaging stroke or else was born "special", I do make it a point to say upfront: [quote]They cut out part of my tongue and made me a new one: but it does not work as well as the Original Manufacturer's Equipment. [/quote] That usually elicts a laugh but no further questions due to the ick factor of the mental image in the listener's mind of a tongue being cut out plus the indirect reference to God balancing it out.
I found it helps people then listen to the content of what I am saying rather than get distracted by how I am saying it.

I agree with everyone that just tincture of time and continual speaking will improve your speech.
Keep the Faith
Charm

Emily -

[quote]Assuming the cancer doesn't come back, am I going to have to be explaining to everyone I meet for the next 60 years why I speak like this?
[/quote]

Well, maybe, but when you're eighty-four you may have a cane to smack rude people with, so it can do the talking for you. I think that Charm's approach is probably pretty effective - a brief description of the problem that does not invite additional inquiry. You might add a statement that thanks the client in advance for their understanding (but don't apologize !!!).

If you think about it, there are lots of people walking around who wouldn't (as we horse people say) pass a vet check. I have a limp from my auto-immune crap that emerges when I am tired or have walked on uneven ground (catching my horse). I also feel badly when people call me on it. Since I am not as nice a person as you, I threaten to show them my hip xray, and say that if they see it they would be impressed I can walk at all.

My very best wishes to you, and {hugs} for all the times when it gets you down. When you are a feisty old lady in a purple hat, you will look back with pride with your bravery and perservence in handling the hard times in your youth!

Hi Emily!


Honey you are in the right place for advice and support on this topic! Our speech is generally one of the prices we pay for survival my dear so I no longer get frustrated when conveying the "why" my speech is affected now.

I grew up with a massive speech impediment, so bad that my older brother had to interpret for me Kindergarten through 2nd grade. I was in intensive speech therapy for six years before I got to a place where I could speak clearly and the incessant ridicule eased up a bit. I can still hear kids running around mocking me yelling "No deew oah wabbits pathing by!" (no deer or rabbits passing by)the infamous line from my third grade school play.

I conquered my speech and insecurity issues after that and went on to use my speaking prowess to become successful in my careers in corporate America in both the hospitality industry and commercial technology sales to enterprise size businesses. You can imagine my mental and emotional state after treatment and surgeries becoming disfigured due to the right side of my face being paralyzed (as well as half of my tongue) when my career was built on how I looked and sounded as much as my expertise.

Today part of my duties volunteering for OCF involves public speaking at the Awareness Walks, addressing hundreds of people, building partnerships with other organizations and even presenting at Universities. Coincidentally fellow OCF'r JenSLP (a speech and language pathologist) and myself just presented to the University of Washington's Speech and Language Pathology graduate students this last Friday concerning working with the new younger demographic of Oral Cancer patients.

The fact that myself and Jen could present to that class and be clearly understood is a testament to how hard we've both worked and how closely we've worked with our speech pathologists, they truly are an important part of our recovery in both the eating and speech department. I would also share that I'm very upfront with people when speaking with them about being a stageIV oral cancer survivor. That information has always given me an "edge" in talking with people, it generally makes people more patient and understanding of my speech issues and usually gives me an advantage in getting what I want

Long story short Emily, keep working, vent when you need to and draw strength from the other survivors on these forums my dear.

Hope that helps,

Eric

Thanks for all of the advice! I started telling my clients right off the bat yesterday at work, and it made me feel much less self-conscious when talking after that. One person even had a father who died of throat cancer, which made it much easier to talk about! Hugs to you all, hopefully it continues to get easier!

Emily,
With each surgery to remove another recurrence, I loose a little more of my ability to speak and eat. I work in the biomedical industry and speaking and teaching are an intregal part of my job. I know that after my last surgery this may where another piece of the right base of my oral tongue was removed, my speech it thicker and it's harder to form the words that came easily just months before. I do worry about my return to work not only because of the speech difficulty but also for the fact that I can only speak for a moderat period of time before my mouth gets tired and I start slurring anyways. I think I will try some more speech therapy but this is starting to dwelt like a lack of tissue problem, not a motor
Problem now.

Hi Erik,
I am sorry to hear you are having speech issues also - it is definitely frustrating! I know I am so fortunate that I am suffering from so few side effects at this point, but the speech issue is still a constant cause of anxiety every day. I am traveling for work every week for the next few months, so I am on a hiatus from speech therapy. I also feel like my problem is more of a lack of tissue problem, but we will see.
By the way, how old were you when you were first diagnosed? I am not going to lie, your signature scares me a bit as it seems you had similar treatment to me your first go-around.
I hope both of our speeches improve soon and you can return to work!

Hi Emily,
I'm 27 years old dealing with the same issues you are. I was diagnosed with osteosarcoma in my right lower jaw.. I have speech problems also n people always stare. I hate it..I'm so self conscious about it so I know exactly how you feel... What has helped me is my support system...I'm very blessed with friends and family...I know it's hard because it's a major life change especially being so young...but try to be positive and hopefully in the future there's other reconstruction treatment out there...I will be having surgery in two weeks for reconstruction..I am hoping the surgery helps my speech also...
Congrats for beating this evil monster!

Hi Edmar,
Thanks for reaching out, it is always good to hear from other young survivors! I also have a great support system, but I find it hard to talk to friends or family about my problems. I don't want to upset my family so I don't talk about my issues much, and with my friends I just feel like it makes them uncomfortable. That's why I like to come here to vent . I count my blessings every day, but I still can't help the self-consciousness.
Good luck with your reconstructive surgery, let us know how it goes! And congrats to you too!

My speech was somewhat changed after the 1st surgery, HUGELY changed after the 2nd. A couple of things:

1) Speech pathologist is a MUST - practice, practice, practice. That tongue is a lazy beast
2) There will be some words that you will never master and eventually you will learn to replace them - almost pre-thinking your speech - words like paddle are forever lost to me - they are now boat oars. You learn.
3) What I say to people is "I have had some oral surgeries, but it is important to me that you understand me. Please feel free to ask to me rephrase something...I don't mind at all (emphasis). I have found that this works very well, and people never ask what the oral surgeries were, I think because I am putting the emphasis on them understanding me.
4) I have a prosthesis which is part of my upper denture. It allows what bit of tongue I have to touch the roof of my mouth and make some sounds I could not before. You aren't there yet - but keep this in mind.
5) Yes, your life is forever changed.
6) The best practice for your lazy butt tongue is talking and eating - so enjoy!

Hugs

Donna

Erik,

You speak great for a guy that's had OC 3x brotha. The only time I really couldn't understand you was when we were watching 21 Jump Street and I was laughing too hard to hear what you were saying!!

Don't b*tch to Korean Jesus, he's got Korean Sh*t to deal with! Sorry couldn't help it.

Eric

I was 32 and was last diagnosed again at 38 so tha would be 2006 for me. Did you have Erbitux as well? Or just the Chemo with your radiation.

Nope just Cisplatin. It sounds like you have had a pretty rough go at things, I am sorry you have had recurrences. I am only 6 mos out of treatment so I can't count my blessings just yet... just have to pray and hope it doesnt come back.

Emily, depending on how much tongue you've had removed you speech should clear up. I had 1/3 - 1/2 and the muscle of my real tongue - the old side - has slowly strengthened to compensate for the side with the flap. I still have a couple of words that cause me problems and I Still get lispy when I am tired, but for the most part it improves steadily - my husband says he can't tell if there's a problem. I think the surgeon has a lot to do with it as well. Mine did a great job of rebuilding my tongue.:) even my rads dr. Was amazed at my mobility. It acts normal for the most part. Time does heal. Hugs

Hi Emily:

I had half of my tongue replaced and a flap from my forearm as well. That was August last year.

I just finished up speech therapy about a month ago. I highly recommend it. I also had to do mouth and tongue stretching exercises. So the sooner you get started the less stiffness you will have.

She reminded me first that there would only be so much a person can accomplish.

She told me to practice, practice and practice. She gave me many exercises and tongue twisters. I did what she said and my speech is still a bit "lispy" but I am so much more articulate now. I practice talking to the cat every morning before I talk to people,lol.

We recorded my voice in the beginning, then I read the same passage again at the end of the therapy and you CAN actually hear a pretty significant difference. There is also tone, pitch and volume to consider for which the therapist can help you.

Since your tongue is a muscle, keeping it stretched and strong helps with speech and eating.

Wishing you the best!

I took speech therapy for about 4 months after radiation, but since I have started back at work I have been travelling constantly so I have taken a break from therapy. I seemed to hit a plateau in progression, though.
As far as recontruction goes, has anyone ever heard of a surgery where tissue is added to the tip of the tongue? My aunt, coincidentally, is an Otolaryngologist, and she said she has performed this surgery a few times. She asked my surgeons at MD Anderson why this option was not given to me, but apparently MD Anderson doesn't do that particular surgery. I plan to have her examine me next time I am in town to see if that would be a viable option - I was just curious if anyone else has ever heard of that type of surgery.