Previous Thread
Next Thread
Print Thread
Joined: Sep 2009
Posts: 701
Likes: 1
"Above & Beyond" Member (500+ posts)
OP Offline
"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)
Offline
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 smile


Christine
SCC 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 smile
Joined: Sep 2009
Posts: 63
Supporting Member (50+ posts)
Offline
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 Offline
"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)
Offline
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)
Offline
"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)
Offline
"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)
Offline
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)
Offline
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

Moderated by  Eva Grayzel 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,167
Posts196,922
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5