#95556 05-15-2009 05:59 PM | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Did any you feel all alone after your Dx. I know that I am a lucky one to cath it so early, and am very greatful for that. I can not wrap my hands around the idea of having SCC in the first place. Some days are better than others, but I am trying to be strong for my children and not show emotion. When I went back to work on Wednesday for ths first time, I am a teacher, I had some kids making fun of the way i was talking. I was not upset with them because all they know is my voice sounded different. What I did get upset was another colleague made a smart remark about the kids not understanding me. That really upset me. I am very self-contious about my speech anyway. Today I had a kid tell me he couldn't understand me. I was not upset at him, but the fact that I can't talk right any more. How can I teach my students if they do not udnerstands. I love my job and I would not change it for the world. Now, I just want to be left alone. My own children want me to do things with them and I do not want to. I want to in my room and just be in bed. IS this a stage of the process that you go through? Does it get easier? I am really trying to have faith, but when ever I talk to someone about this all they say That is not a good one to get. No cancer is good to get. Anyway, sorry I just needed to vent.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Angelia, little sister is a teacher in Chicago where it;s a rough job,, I bet she can give you some pointers. I psy no sttentio when someone makes fun of me, I had to call a company the other day about a problem, The lady spoke aboue as much good english as an asian bull could. She ehad the nerve to tell me she couldn't understand me, LOL I said lady I have had cancer and can't be understood sometimes, Now what in the hell is the reason I can't undersand you?? I told her to quit her job and go learn some english so customers would understand what she was trying to say, Needless to say she sure did get polite,, BUt I didn't LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Angelia,
All of us have to get adjusted to having cancer. That's just normal. Time and this site will help you a lot in that regard.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Mar 2009 Posts: 54 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2009 Posts: 54 | Angelia, I know how you feel. I was there once myself. I have used crutches, splints, neck braces and now a walker for over 20 years. Several years ago a neck surgery cut the nerve to my Rt Vocal Cord. This had a big impact on my speech. For my physical appearance I've said "I had an accident", "was in a bar fight", "fell down stairs", "arthritis". depending on the person asking. You get the idea. My neck on the Rt has so many scars, from 5 fusions and now 2 cancer surgeries I'm thinking of using, "its my make-up for a "Horror Skit", looks real huh". With little kids I just explain very simply.
My speech could be difficult to understand to some people. My cancer surgery has made it harder yet. Especially over the phone. You didn't say how old the kids are that you teach. I tell all ages that I had an operation and it is difficult to speak. To tell me if they don't understand a word or words. I do try to speak slower and concentrate on pronouncing as clearly as possible. I practice in front of the bathroom mirror. Kids pickup what you're trying to say faster than adults. As a teacher you have a blackboard to go to if all else fails. Have you let the kids know why your speech has changed? This would be a good teaching opportunity. I know it may make you uncomfortable. It's ok to feel down for awhile as long as you are working at making things better. Venting here is good. Good luck.
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I have not even thought about telling them why my speech has changed. I teach special ed students and co-teach in some reguarl classes. I mainly work with 6th grad students. My special ed. students know that I had mouth surgery and are very understanding when I have stop tlaking because it hurts. The classes I co-teach in do not know all the information as to them I am just an aid.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Angelina,
What you are feeling is NORMAL. I had a very hard time too. I work in customer service so I can understand the talking at work problem also. I wish I could give you a hug....you will get through this. You will come to terms with this in your own way, at your own pace and that is ok. I'm sorry the people you work with are not sensitive to what you are going through but people can be rude. Do you have anyone at work that you are close to? I used to walk with my boss every day and she was a huge help to me and still is.
I would like to thank you for what you do. My younger sister is in special education classes and what you do is a wonderful thing.
Please feel free to send me a PM whenever you need to vent. I hope this site is helping you also...there are a lot of wonderful people here.
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | There are a few people at work I can talk to, but this is my first year at this school. Now don't get me wrong most of my colleagues have been very supportive and my boss especially. She has said to take as much as I need to recover. I guess my whole thing is that it all happened so fast.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2007 Posts: 346 | Well, my heart goes out to you - I taught at a Community College many years Our company bought another company and they have moved in with us. One person said they thought I had been in a car crash or something. I just said nothing. I don't want to tell them what happended to me because I don't want their sympathy. I wear turtlenecks and mock turtlenecks all summer. I need to quit that I know. It's hot and it looks stupid I know, but I cannot stand to look at my neck. My speech also varies from day to day. Somedays good - it depends on how I sleep and how much or what I try to eat. I try to speek slowly and that helps, but it is hard to remember. I would think children would be more forgiving.
It is hard, but we have the guts to carry on. Just hold your head high and know how strong you really are.
We are here to listen. Every day is a new one with new changes. I'll be cheering you on from afar. Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO. Had 14 hour operation which included reconstruction of jaw. Reconstruction failed. Some radiation, no chemo. | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Angelina, I can say that I can relate to you in some ways. My speech was more affected by facial paralysis then by my mandiblectomy/fibular free flap. Anyway I managed hotels in my previous life and due to my severe speech impediment, I am no longer able to do what I did before cancer. I get stared at wherever I go due to my scars and disfigurement due to the facial paralysis. I've been called retarded several times and people generally have the "what the hell happened to you" reaction to me and some have even said that to me.
I made my living and got to my station in my field due to my ability to speak, publically and in a sales/customer environment. The way I looked helped me in everything I did, not to sound pompus at all, however I made sure I was meticulously dressed and groomed at all times. Now I look totally different, horribly disfigured and I lost 70lbs so none of my fine clothing fit. I look like hell and that draws a lot of attention.
I have a hard time seeing myself in the mirror or even pictures of me from before cancer and not breakdown. I know that eventually I have to come to grips with my "new" self but I loved the old me and I'm still a little bitter losing that.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Angelina, it does get better you are just barely out of surgery!! I suspect a lot will come back but you must give it some time; it is actually amazing how much you can and will adapt and compensate. (Although YOU may not think so). Then there is this, there is a huge variety how clearly people speak anyway (accents and all that, just look at Arnold.. ok bad example). One way to combat your problem is to increase the visual portion of teaching (use more graphs figures/handouts).... or the ppt lecture from hell! I still have problems with some words too.... just try to say magnetic susceptibility quickly.... same with assassin (although that word I do not use that much in class). Also consider this now and again: we are lucky to be able to have these problems.
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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