| Joined: Oct 2006 Posts: 209 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2006 Posts: 209 | I'm guilty of being the type who tries to say something positive.
The hardest lesson for me to learn is: Be there, shut up and just listen.
ginny
Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
| | | | 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 | thank god for people like you Ginny, otherwise who would there be to listen to loudmouths like me 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: 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 | When you waited 7 excruciating days to get the results of your first post Tx scan and there's a SPOT and your trusted doctor calmly says "It's probably nothing, let's wait another 3 months and take another look." Yeah I'll sleep better now!!
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: Sep 2008 Posts: 130 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2008 Posts: 130 | "But you didn't loose your hair?" (and I wonder if I'm the only one that wishes sometimes that I had lost all my hair.)
And my dear friends it is not that I do not WANT to eat it is because I CAN NOT eat. It doesn't matter how good of an idea you think it is, anything thicker than water is going to get stuck in the back of my throat and not move. SO QUIT ASKING WHAT I'M EATING!!! And if I've tried (whatever) Believe me, I have.
Amy
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: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | My husband's "passion" is cooking. He is always watching the cooking channel even through all his treatments and loves trying new recipes. Yes I do know how to cook but I don't really like to and since he does, he has ALWAYS cooked our meals. When John became unable to eat by mouth which lasted for about 4 months I did manage somehow to cook and keep myself alive. John has lost 30 lbs even with the PEG which was removed in July. He is now eating again but it is a struggle. He has no appetite and food that he used to love doesn't taste the same and worse yet is the texture of foods. More than one person has said to me "you just need to learn how to cook John some good meals and fatten him up". So evidently John's lack of taste, appetite and desire to eat and gain weight is due to my inability to cook. I don't know how I kept my 2 kids alive for 7 years while I was a single parent.
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Amy, to eat food they can have my hair too. Just one burger, one steak, tosat and bacon with eggs, geez, there are are many things that I haven't tasted for many moons.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I do have to add this, I am alive if the opportunity presents itself.
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Here are some things people have said to me that really made me want to cut their tongues off. "Are you sure the students will understand you", I said "Do you understand me?" By the same person, "I know I upset you about my comment the other day, but you have to admit you do sound funny."
Another one was, "You sound worse today then you did yesterday." That really made feel like I was getting better.
I had several people as ask me, "Could I see it?" My response, "You won't see anything, it was all cut out."
4 months out and I am getting sick of people asking me how I am doing. I just want to move on and quit being reminded of what I went through from other people. You know?
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: 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,
Not to break this funny thread but I am 3 years out and they still ask me "So how are you doing?". I just say "great, couldn't be better, how about you?"
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: Aug 2008 Posts: 100 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2008 Posts: 100 | OK, I will be a little two faced here.
First, I will also admit to asking "How are you doing" but I think it comes from not knowing what to say or how to offer to listen if there is something the person wants to get off their chest. For those better with words, is there a better way to convey concern, compassion, etc.? I also know that I had no idea what cancer meant just over a year ago. Although, I knew some people that had the dang thing, did not know what life was like day in and out and outside of spending a couple of weeks with them, don't think I could have known what they were going through.
I know I hate that, "how is Pam doing?" or "doing today". I would like to answer with go read her CaringBridge website and get back to me but constantly end up with trying to decide what to share with the person. Is there any good answer for people with good intentions without going into a 10 minute conversation or the "doing well"?
Tom-CG to wife, Pam 46@dx Stage IV Tongue Cancer T2N2C Dx 6/08, Surgery 7/08, 3 nodes positive 9/08 33IMRT/7Carbo/Taxol 4/09 node biopsy positive, mets to lungs/stomach 5/09 Cisplatin or Cis/Alimta study 6/09 Cis/Taxotere 9/09 Taxotere 1/10 Xeloda 3/10 Cetuximab weekly 6/29/10 lost battle
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