#34938 01-31-2007 11:01 AM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Jan 2007 Posts: 735 | Well I am having my surgery feb 9th ..fastly approaching , specially since i just found out jan22nd. The Dr I am seeing used to work at Sloan -kettering and I do have confidence in him , He spent alot of time answering 8 million questions as if there we no other Pts .and I have also spoke to on the phone a few times. I am going to lose atleast 1/4 of my tongue and have a selective neck dissection on the left side, I was a T1 but after further pathology info they are saying Closer to a T2. I have a CT of neck and Chest on MOn Feb 5th m, hopefully all clear so I dont have to go through the right side of neck too. I have been scared , nervous, frusttrated, But my kids dont see that, not much anyways, actaully I have let no one see it. Only cried in front of someone when I was diagnosed. I have 5 kids ranging in age from 6-13 . I want them to know it serious, I dont want them to be scared, but the arguing over nothing and that stuff I will and I think I do need a break from. Any ideas ? I just am being strong giving everyone the medical info I have like dr would ( not as good though LOL) and everyone is like OMG you are handling this so well and i cant believe you have researched so much and asked so many questions My response is I HAVE TO. I do think at some point I am going to crack the Closer the 9th comes , Maybe my not breaking and taking the medical info approach is my denial, but I think reality is going to hit and I dont want it to hit in front of my kids and I just need help or ideas in how to do this.
Sharlee 35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#34939 01-31-2007 01:38 PM | 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 | sharlee,
We all deal with these things differently to hopfully achieve the same results. I wrote a letter to all my clients. I cried writing it and my Office Mgr cried when she typed it. After that I found it easier to talk to everyone.
Once people found out I found that all the petty stuff went away on it's own but I didn't have kids to deal with. Even my employees laid off their normal stunts. I did have and still do have 8 cats and even they seemed to sense something and appeared to give me a break from their normal mischief for a while that is. Their back in full force now and so are the employees.
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.
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#34940 01-31-2007 02:01 PM | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Sharlee; Telling your kids is tough, but sitting them down and explaining everything in an open, honest manner is what I think is the best approach. My kids are older and understood what was going on, but it was still the toughest conversation we have ever had as a family. They need to know, and deserve to know. I think once you share everything with them the older ones will be a huge help to you. By the way, we all cried that evening. I wasn't going to, but when they started I couldn't hold it back. It's OK to be scared and they may surprise you and have a great insight into your feelings. Everyone has their own way of dealing with something like this so best wishes and good luck with however you approach it.
Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
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#34941 01-31-2007 07:27 PM | Joined: Dec 2006 Posts: 77 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Dec 2006 Posts: 77 | Sharlee,
While my kids are smaller than yours, ranging in age from 2-5, a couple of things came to mind when I read your post. I think one mistake we made was trying to prepare them too much for the fact that I was going to look a little beat up after the surgery. My husband took one look at how swollen I was and decided that he'd better make sure the kids were prepared. But what happened was that they were afraid to even look at me when I first came home. They actually ran and hid. And then when they finally warmed up, they said that I didn't look nearly as "freaky" as they were expecting. I should note that the two year old didn't hide. He welcomed me and didn't seem to notice or care that I looked crappy.
And one thing that I think we did right was to keep the kids' schedules as normal as possible. They knew that Mom was sick, but we tried not to let it throw them off too much.
And my hubby has been a godsend in running interference. He can tell when the noise is getting too much for me and kindly engaged them in an activity in another area of the house. This was good even before my surgery when I'd be feeling down and just needed some time to myself.
I'll be praying for you on the 9th.
Amy
Dx 11/30/2006 Stage I SCC of gum/surgery 01/12/07 resection of the right posterior mandible with a right buccal transpositional flap 3 teeth removed/reconstruction to come in 9-12 months
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#34942 02-01-2007 02:58 AM | Joined: Oct 2006 Posts: 248 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2006 Posts: 248 | Quite honestly I think kids handle this stuff better than adults do. Don't lie to them and let them know it is not permanent and you are going to get better.They don't need to be told everything.I know my oldest daughter knew the severity of this disease so I made a deal with her that people never know if they are going to beat cancer but Dr. know when the disease is incurable and I promised her that I would tell her if my cancer ever reached that point. They are afraid but they always rally around you. I wish adults could handle things as well as kids do sometimes. My kids were the best thing for me, helping me refocus my priorities.
Mark D. Stage 3 Nasopharynx dx10/99 T2N3M0 40xrad 2x Cisplatin 5FU. acute leuk 1998.
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#34943 02-01-2007 03:15 PM | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | One thing to keep in mind with any sort of tragedy around small children is that they are very self-centered and are very likely to blame themselves for somehow causing something to happen (like a divorce) -- It's important to explain it so they are very clear that it wasn't their doing and then to watch for signs that they still are blaming themselves.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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#34944 02-01-2007 05:01 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Hi, Sharlee,Since you know your kids' personalities best, I would suggest the following:#1. Tell them all that when you come home after surgery, you will need to have plenty of rest time. Remind them what they feel like when they have had the flu, bad cold, etc. Develop a signal- like raising your hand or a short sentance that means "O.K., it's Mom's quiet time now-goodbye for a little while. #2. Talk to your most responsible kids and ask them what household chore they could take over for you while you get well. #3. Establish a buddy system, starting at the oldest and assign each child some responsibility for a younger one's welfare. They could see this as a fun challange "taking care of my little bro or sis. When my husband was first diagnosed, our 14 yr. old grandson was living with us [and still is] and his question to me was "Is this life threatening?" [which rocked me a bit]. I told him that cancer is a very serious illness, but John's Docs would do everything they could to cure him and they had told us they thought a cure was possible. I also told him that John's impending surgery and further treatment would change our daily routine for some period of time and I was counting on his help. He stepped into handling the things he could, lawn mowing, weedeating, yard cleanup, getting the carts out on trash day, feeding the dogs, etc. I've also taught him how to do laundry & iron [mostly his stuff] and he is learning to cook. [When he gets married, his wife is gonna love me] Before Alex saw John [after 1st surgery] we told him about the staples in John's neck, the peg tube and the facial swelling. He handled John's appearence MUCH better than John's son did! [who was 36 at the time] I also hope you have other family members and friends to whom you can give meaningful assignments for the duration of your treatment. You really deserve to have the best chance at getting well and that means not having to worry about anyone but you, once you get started. I know that someone with 5 children is pretty much zoned into taking care of everybody else--but for a while now-- you really have got to take care of yourself. We are pulling for you. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#34945 02-02-2007 04:03 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Having cancer is difficult enough. Having it while your children are small is simply not fair. BUT, it's doable and I'm proof of that.
My children, I have 7, were ages 9,11,12,17,18,20,22 when I was diagnosed and my two grandaughters, who we see daily, were 3 and 4.
The best piece of advice I can give you is to take the cues from your kids, don't second guess everything, they will give you all the clues you need.
Second, this is a fantastic opportunity for your husband to become a better father by being a "mother" for a few months. My husband will tell you that he's much closer to his children because of this cancer and the hands on role it put him in temporarily. Lean on your husband.
Third, their fears are huge, in particular the older ones. Don't fool yourself on that. But, YOUR fears FOR them are bigger and it is those fears that will eat at you. The thought of leaving our children puts our minds in a fragile place. You will be more fearful then they will.
Fourth, maintain as much a normal life as possible. If they play on a team, keep that going. Lessons, keep them up. Don't let life shut down around you, the normalcy is like air to them.
Fifth, Be honest and don't make any false promises to them. My 12 year old asking me if I was going to die was rough, but I didn't lie to her about it. Told her I might but I was going to do everything I could to stay here with her. That was enough for her.
Last but not least, keep in mind that even WITHOUT cancer, life with a house full of young kids is CRAZY, CRAZY, CRAZY.........don't let the cancer rule you nor define you.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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