| Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | My husband and I spent the weekend with family in another state. Most had not seen us for over 2 years. I wanted to be sure that no one would react in a negative way to Clark's changed appearance. To prepare them for that, I emailed everyone and described what he looks like, ie, weight loss, facial disfigurement, etc. I asked them to approach him with their best smiles, give him their warmest hugs, tell him how good he looked, ask him questions regarding his upcoming procedure, and feel free to give him some good natured ribbing (as is usual).
They were all glad I clued them in beforehand as they were not shocked when the saw him at last. It was especially effective with the littlest family members who commented that even though he looked different, he was the same person and they still loved him.
It took the pressure off everyone and we had a great time.
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Anita, you are one brilliant woman!!!!! You made the holiday a special one for all by making sure there were no surprises waiting for Clark. Im sure it lifted his spirits tremendously seeing everyone and not feel like he is being scrutinized. Good job 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: Sep 2009 Posts: 63 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2009 Posts: 63 | Anita, I got all choked up reading that! It gives me hope! I think we all think the worst is going to meet us; I don't want my family to see me like this. Pat C
Pat - 62 yr. old -DX 8/29/09 SCC stage III floor of mouth Lower teeth& bone removed Port& Peg Cisplatin x3; Rad 35 - ended 12/21/09 Fox Chase 2nd opinion-mandibulectomy; tracheotomy; left neck dissection; jaw reconstruction 5/13/10; flap failed;new flap 7/13/10; lipo January 2011
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Christine,
Thanks for calling me brilliant! You made my day. I didn't want anyone to shrink away from Clark and have him see their shock. I am so glad I did it that way.
Pat,
To get support from your family regarding your changing appearance, why not print this out and let some family members read it. Sometimes people don't know what to do, say, or act.
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Sep 2009 Posts: 63 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2009 Posts: 63 | Good advice! I've been thinking about doing That!
Pat - 62 yr. old -DX 8/29/09 SCC stage III floor of mouth Lower teeth& bone removed Port& Peg Cisplatin x3; Rad 35 - ended 12/21/09 Fox Chase 2nd opinion-mandibulectomy; tracheotomy; left neck dissection; jaw reconstruction 5/13/10; flap failed;new flap 7/13/10; lipo January 2011
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Way to go Anita!!!
Physiologically for Clark that would have given him such a boost to his confidence. Glad you had such a wonderful weekend
Karen
Last edited by Karen Rose; 04-05-2010 07:13 PM. Reason: typo
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | 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 | For the over 2 year reunion you not only make it easy for Clark but the whole family as well. Glad to see you all had a great time. I agree with Christine "brilliant woman!"
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: Aug 2008 Posts: 238 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2008 Posts: 238 | Anita, that was the perfect thing to do! No surprises... only warm welcomes and love. That was great to hear. My mom always worries but she comes to the family functions when she's up to it. She worries most about small children being afraid of her because she saw that happen in our church years ago. Pat, sending these posts to your family is a great idea. You should not be afraid to join your family and let them share their love with you - you deserve it!
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11. | | | | Joined: Nov 2009 Posts: 76 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2009 Posts: 76 | we are moving ahead with our wedding date of 9/17 and my future father in law is nervous about seeing family members there. i will show his wife this post for inspiration. thanks!
*KATIE* future FIL dx with s4 SCC in jaw11/09 15 hour surg/trach/PEG in. 7 weeks of cisplatin/rads. 6/10- cancerous lung nodule- 1 wk of radiation. 8/13 pneumonia. 8/24 pulmonary embolism, on ventillator. 9/3/10 died peacefully w/o pain with family. 9/17/10 my wedding
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