| Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Sorry about your padre in law...  but happy your hubby is back to work and enjoying life!  you both deserve all the best! Praying things go well for his surgery! And he's back to feeling gret in no time! Hugs!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Thanks everyone for your beautiful words and thoughts. I'm here to say that all went well today. It was an incredibly long day for both of us but it's over, finally. Nearly 2 years of waiting on this surgery and finally it's done. It wasn't as major as first expected and no metal plate was put in so thank you to HBO for making this day a lot easier. Steve's happy it's over, currently still numb but happily they let him come home. Could have been the fact that he pretty much sat up in recovery and said I'm ready to go that swung that his way lol. You can't keep him down for long. But right now he's snoozing away so that's good.
Anyway to all of you, thanks so much for your never ending support. I'm saddened to say I won't be posting anymore, even if it's not currently very often. Seems my happy stories of Steve returning to work and being well and happy have upset a certain OCF member. Sadly this person thinks that the fact that I'm incredibly proud is actually my not so subtle way of saying her husband should be better than he actually is. This is something I have never intended, I did not think there were any kind of comparisons to Steve or anyone. Cancer is cancer and it sucks. We all heal differently and at our own pace. My posting here and on facebook about how well Steve is doing is done not only because I'm incredibly proud of this beautiful man I married but also to hopefully show people who are going through this horror that there is life afterwards, a good life. So I will be taking a break from OCF for a bit. I wish you all well as always, you have been the best support I could ever have wished for. Love you all very much xx
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started. 17/03/22 lost the battle. Missed dearly
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Wendy, I am so glad to hear Steve is doing so well. I have been following along but usually dont post. It was a very long road for you both. I think it is very inspirational when members stick with OCF and post encouraging updates and anniversaries. It shows others that there is an end of the misery and life can return to almost normal again. Sure we all have our own after effects to deal with, some more than others. Its something we all need to adjust to and learn to live with, thats our new normal.
I hope you know that if someone is upset by Steve's successes then it is not anything to do with you or Steve. It is sad that their spouse has not recovered better, hopefully they will still get better. I really hope we have not seen the last of you and Steve!!! OCF is for everyone. Sometimes messages are misinterpreted when reading it written instead of hearing someone voice speaking the words. Im not aware of any admin being notified about anything disturbing in any of your posts. I have never seen anything even questionable about any posts you have written. The only thing I see disturbing in your posts is the very last one saying you wont be on OCF anymore. Hope you change your mind!
Last edited by ChristineB; 12-12-2011 10:05 AM.
ChristineSCC 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 | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Oh Wendy - Please do stay with us! It is so encouraging to hear how well someone is doing and so inspiring and so important to recovery not just for the patient but for us caregivers, too. We all learn from each others' experiences and this helps us in turn to be encouraging for someone else. Sometimes, even though we try to choose just the right words, it can happen that the message sent is not always the message received - since we don't have the benefit of personal contact and body language to help us share or interpret our feelings. I'm so glad that Steve is doing so well. If you do need a break, I'm hoping it is a short one and that we see you back to let us know how you are both doing.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | HI Wendy
Can I put my selfish viewpoint about you posting please? What about this OCF member who searches the forums every week for your posts and shares Steve's progress with Alex, to maintain his hope for the future?
I recognise that posting is sometimes stressful, and if it is for your own sanity that you need to leave, then I accept your decision, but please know you saved my sanity 12 months ago and really help when I need a "third party" to tell Alex that his experiences today will get better tomorrow. Yes, other stories do it too, but yours was the first one close to home. Even Alex occasionally asks how "My Steve" is going.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Hi, Wendy This is not the easiest site to frequent due to its subject. I had to take some time off from OCF to get my head wrapped around my lupus diagnosis. It's harder to deal with someone on a forum being unkind, and I think that taking some time off will help. My best wishes for you and Steve, and hope to hear fabulous news from you again.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Wendy
I'm guessing you got a disturbing private message? I can empathize, having been on the receiving end of very hostile PMs. Even someone like myself (who made their living dealing with unreasonable people by showing them just what unreasonable really is) does not like them. Exuberance and/or adjectival hyperbole gets misunderstood as somehow putting down others who did it differently. Why let yourself be driven off OCF? You can just delete PMs without reading them if the sender upsets you. Charm
Last edited by Charm2017; 12-12-2011 01:15 PM. Reason: toned it down
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Wendy - Karen makes such a good point. When my son was in the throes of Rad Tx, every day I would check on Davidcpa's progress because he was 4 months ahead of my son's progress and just knowing what was happening with him gave us so much hope that we too, could have the same good news to look forward to! Charm - I love all your posts, toned down or not. I am charmed, also by your "edit reasons". 
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Fantastic news Wendy that the surgery went so well and was not major and also that the HBO is doing its job. As for the other please don�t let anyone Rain on your Parade! Hoping not to sound sexist but it occurs to me that there are so many men here on OCF whose caregiver female partners, wife, mother, sister do such a wonderful job. They have to because the patient in many cases prefers not to know too much and leave it to their caregiver to do the research and liaising with the professionals while they are spoon fed information on a need to know basis. You and Steve have come so far in this struggle and anyone who does not wish you well is not deserving of your support. Congratulations on being an inspiration to all here who love to read this blog and follow your progress. It goes to show that there is a bright shining light at the end of that long dark tunnel. Love to you both and I will look out for your next post 
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | Oh Wendy, how sad this is! You have every right to be happy about how things are going with Steve. I'm disappointed that you've been criticized for sharing that joy. We can't control how things turn out--good or bad. All we can do is work with whatever we're given.
Our situation was something I was reluctant to share here. But, the generosity of people on the OCF forum--people who have suffered tremendously at the hands of the beast--helped me to enjoy our good (and at times, dubious) fortune. That these people could be happy for us was humbling and deeply touched my heart.
I have always thought that it is good for the soul to be happy when the fates are particularly kind to someone. I am truly happy for you and Steve.
You have given so much of yourself here. I appreciate your compassion and kindness. You helped talk me off of a mental ledge on more than one occasion! I hope you don't stay away. You have a great deal of knowledge to share. And, you give people hope.
Love you, my friend! Sandy xoxox
Last edited by Sandy177; 12-13-2011 02:04 AM.
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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