| Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Why not tell them to ask her themselves?
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 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | When I was trying to get back to work my general manager told me " I've always found that the best way to feel normal again is to just get back to work". She sits at a desk. I drive a 13 ton bus full of human beings around the county. If she not feeling 100% and maybe a bit drowsy, nobody dies from it. Also, while I was off the office staff sent a get well card. Our safety manager signed it "Safety first but health is important, too". Had to laugh at that one, it was so dumb.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer. And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer. May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Angelina...don't me started on that person you work with!!! We've talked about that before:)
I also like this one..."Mmmm you're so lucky. Now you have an excuse to eat ice cream and milkshakes" to that I say "It hurts to swallow my spit and to get down a little sip chicken broth I have to take pain meds 30 minutes before and use viscous lidocaine during. Man...I am lucky." I tend to be a little harsh because I hate when people say stupid things. But then again, they don't know what to say. There are VERY FEW people that talk to me about it and it doesn't bother me.
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: Sep 2008 Posts: 130 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2008 Posts: 130 | have you all noticed that the people you want to talk to about it, don't want to talk about it and the ones you don't want to say another word are the very ones that wont shut up? What's with that?
My boss tried to compare his sunburned back to my trimus pain last week.
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side. ND March 2, 2009 reoccurance dx'd Aug 19, 2009
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | As Yogi Berra said: "It's Deja Vu, all over again". Your stories and posts each evoke similar experiences that both my wife and I have undergone. What's great is how we have all kept our sense of humor through these trials & tribulations. The "how are you" thing is difficult. What is vexing is that no answer except some variant of DavidCPA's "Doing Great" is what is truly expected from you. I think everyone wants to be reassured that even if they did cancer, that it's no big deal what with "modern medicine" and all. And in indirect response to AmyK's observation, if you really answer with details about the pain, the frustration, the seemingly endless complications, the fear of recurrence, or any other facet of the "new normal", the good people are shocked and then avoid you, while the a**holes just nod and tell you "it'll get better" and then launch into an explanation of how their stubbed toe or hangnail or sunburn really hurts too. To keep the ball rolling here is another actual comment - this one from my mother-in-law: "Oh, some of the people here have had cancer and they went clogging right after their radiation treatment. Are you doing anything like that?" PS. I am leaving in a few hours to try and drive the four hours to NJ (beach traffic) to go to another eighth grade reunion (Class of 61 turns 62)where surprisingly people who spurned me then have matured and rallied in support with cards and truly compassionate comments at last year's first reunion after 47 years. We had so much fun, we are doing it again. SO NO POSTS UNTIL MONDAY. HAVE A GREAT WEEKEND. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | That is exactly how I felt at the beginning. It is so true. The one's I do not want to talk to about it are the one's that ask me how i am doing and how my tongue is. All I can say is doing well all the while I am trying to firgure out how they knew since I never told them. [quote=AmyK]have you all noticed that the people you want to talk to about it, don't want to talk about it and the ones you don't want to say another word are the very ones that wont shut up? What's with that? My boss tried to compare his sunburned back to my trimus pain last week. [/quote]
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | On a not so funny note, what I really really hate are posters on OCF who post live links to their bogus Mexican clinics like the recidivist who just did it again (by editing his original post I guess) on the adjunctive therapy forum You can see that Gary and Brian were all so nice to this tout who has posted 15 times here drumming up business for his buddies who take desperate people's money. What is worse is that this guy was cured at John Hopkin's with regular treatment but attributes it to mexican magic. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | If links end up back in signatures or posts, the person that insists on breaking the rules of use - that they agreed to when they joined in the discussion forums - will have their ip address banned and not be able to post here at all ever again. The rules are set up for a reason, so in the tone of this thread, what I really don't like are people that try to do an end run around things, to get their way in spite of the rules.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Brian
Glad to see you contributing to this particular thread. I still shake my head in wonder when I read some of the crybaby posts sent your way, bemoaning an imagined rebuke when all you did was point out a rule or else make an honest comment that rightfully has a negative component. I am only beginning to fully realize just how fragile many of the posters are but luckily for me, any "derogatory" comment is just my opinion - not some perceived judgment from the founding father. I really appeciate you and Gary's deleting those mexican clinic and miracle cure links and quick response to my "notifications". It's a sore point with me and I make no apologies for coming down hard on those who would prey upon my OCF family charm
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Apr 2007 Posts: 64 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2007 Posts: 64 | I have not been on the forum for a while, just enjoying being well! 3 yrs and 3 months and I count every single day. I had to post here because this is my biggest issue now, with family and friends, they just don't understand what I live with and what I can and cannot do or eat, and how could they! Not like having a tooth out or another type of surgery that heals with no "New Normal". What can I say, nice to know that I am not alone in this, people here on the forum do get it, thank God for this place to vent. Here is the best one that was slung my way not long ago and I quote "my friend has just been diagnosed with cancer, but not like yours, you know the real kind in her breast" Gotta love that one....I was speechless..
Adele, mucoepidermoid carcinoma of the submandibular gland, 05/06, left neck dissection, gland and tumor removed, intermediate grade, margins negative, 9 lymph nodes negative, no rad, no chemo, 11/07 surgical biopsy of lymph node left neck, no cancer!
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