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#35408 07-29-2007 08:00 AM
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I have stage 1 cancer in my chhek and top of mouth. Im not sure the exact medical terms for these kinds of oral cancer.
Tomorrow morning I am going into surgery to have the PEG tube and port placements done. Tuesday I am having 3 teeth removed. Wednesday is my hearing test and I pick up my flouride trays. Friday I meet w/ my chemo doctor and next Monday, Aug 6th the real fun begins. Chemo 3 doses w/ radiation starting on the 9th for 7 weeks.
I have found this forum to be very helpful with info and what I can expect. It has given me the emotional support I despertly need.
I am a single mom of 2 teenagers who depend on me. Now suddenly I must depend on them, which is hard for all of us. They know Im sick, but I dont think they realize how bad its going to get, even though I have tried to prepare them. I honestly dont know how Im going to get thru this. Im not at all giving up, I just feel very much alone. I will fight this with all I have and cant wait til next year so I can have a real summer vacation instead of the limitless docotr visits. I really have no one I can talk to about my fears. I do have a 27 year old neice, I cant talk to her because when I try all she does is cry and she tells me she is scared Im going to die. I cant be around the negativity, I must stay focused on beating this disease. Im scared to death that my life now depends on my children who cant ever put their own wants and needs aside. Im going to talk to the hospital support therapist one day next week. I must rely on my son for the 7 weeks to take me back and forth to the hospital. There arent any volunteers in my area to help with transportation.
As far as my job goes, I get 13 weeks paid disability. After that it goes to 1/2 pay which means I cant pay my bills. My plan is to try to get in there one day this week, that will give me another week at the end to recover. If Im able to go in after getting my first chemo does, then that will buy me another week.
This whole situation really really stinks!!!!! Anyone have any suggestions?


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
#35409 07-29-2007 09:27 AM
Joined: Jul 2007
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Christine...my heart goes out to you...what a horrible situation to find yourself in...I'm so lucky to have a husband, friends and family to help me through this...a couple of years ago I would have been all alone, even no kids, as you are...I don't know what to tell you...I was just given my diagnosis last Thurs and I know how scared you are...it all seems so unfair at times...I will keep you in my thoughts...maybe your kids will turn out to be tougher than you think...maybe you should see if the hospital therapist can do a family get together...or, one on one with each of them...are they both boys?...I know this sounds kind of funny, but is there a senior center in your town?..most of them have those little shuttle type vans to haul the blue hairs around in...they just might be willing to help out a desperate mom who needs a helping hand...what about the churches in your area?...we're not religious, but it seems as though they are always eager to help folks in need...I sure would let them know...don't turn down any help out of pride...not saying that's who you are, I just know how independent I am!...I have always had the attitude that I can take care of my own business, thank you very much...;-) even with the support I'm getting from everyone, I still feel very alone at times, too...that's why these websites are so helpful...you're connecting with people just like you...don't give up, Christine...there are hundreds of us out there pulling for you...if you feel like crying, go for it girl...don't hold it in cause you'll just make yourself sicker...your kids will get over themselves if they see you crying...they are made of china!...I'll be thinking about you all day tomorrow and sending positive thoughts your way...let us know as soon as your able how everything went...here is a smile from me to you...:-) Katie

#35410 07-29-2007 09:28 AM
Joined: Jul 2007
Posts: 211
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Hi, Christine,

I am so sorry that you have to go through this treatment which requires so much of you physically and emotionally and then do all of the planning/logistics as well. My husband is going through treatment right now (just beginning the 4th week of what will be a total of 13 weeks). We have one child who is beginning graduate school in a few weeks and no other family members in the area. However, we have lots of friends who kept asking what they could do to help so our daughter sent a group email about my husband's diagnosis and projected treatment. In this email she mentioned that many had asked how they could help. She then specifically told them HOW they could help- e.g., driving him once or twice to the hospital for treatment(in your case, driving you, picking up your kids, taking them someplace or taking them overnight), bringing a meal of soft food such as soups, pasta that people going through this treatment can eat (even if it's just 2 bites and remember that your kids need to eat as well), running an errand, keeping my husband company for a short time, etc. She framed the email in terms of mainly providing information about his treatment but left it open for those who wanted to help to find some way to help that would satisfy their wish to help and provide us with some much needed help. We occasionally send out email "updates." Basically, I cannot imagine going through this without emotional and logistical support. It is simply too much. It is very difficult for me to ask for help but this is one time where even if you had a partner or family member who pretty much was there for you full-time, you would still need company, additional help with something, or your caregiver would need relief. I have found that many people really want to do something to help- so we tried to make it simple by being specific about our needs and our appreciation for any help we received. So, if someone wants to do just one thing to help, that is one less thing that I need to try to do. Your kids might really come through for you if you are clear that all of you are going to go through this together and that you will need their love and support.

My thoughts will be with you- I am trying to figure out how I can do the caregiving, be a mom (albeit to a young adult), be a daughter to my ailing parents, and work full-time. I cannot even imagine how overwhelmed you must feel being the one who is trying to do all of these things and go through treatment.

Sophie


Sophie T.

CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
#35411 07-29-2007 10:34 AM
Joined: Feb 2005
Posts: 2,019
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Christine, The main thing to realize is this is no time to be proud. Ask anyone and everyone who seems at all willing to help for specific help. Have a list of stuff you think you'll need help with (eg. rides to and fro for treatment, cooking meals for your kids, picking up prescription meds, making calls to long distance friends and relatives to keep them updated when your motuh hurts) and aske people what things they are wiling to do on that list.

If you are a member of a church or other religious group, talk to the minister/rabbi/whoever. Even if you are not a regular member, don't be shy to talk to someone and ask for help. If you aren't a member anywhere but you have a friend who is a churchgoer, ask if she will see if people at her church might be able to pitch in to help. Every church has some kind of care committee for people in your shoes--these are people who want to be there for people in need. You may not know them and I realize that may feel strange but remember in most faiths part of ones spiritual work is kindness to strangers in need.

If you have not done so already, call the American Cancer Society and try to find out what they offer in your area. The hosptial social worker may have other ideas about organizations that can help. Ask her.

Just in case you need more time off, you might see if your workplace would allow other workers to donate sick days to you. My workplace already had this in effect as a formal program, but I've heard of other places coming through for people this way when they are really in need.

And don't be shy to come here to vent or ask for advice. We will help however we can!

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#35412 07-29-2007 10:46 AM
Joined: Apr 2005
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Christine, please do follow the good suggestions above- and here's another thought. I remember that you work in customer service for a phone company. Is there any way you can work from home via a computer link? There will be days when you will feel up to doing some work, but maybe not being dressed and driving in. Have you explored that possibility? We are all 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

:
#35413 07-29-2007 01:01 PM
Joined: Jun 2007
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Thank you Katie, Sophie, Nillie, and Amy all for your kind words and suggestions. I have a daughter who is 16 and has alot of her own medical problems and a 17 year old son. My daughter does not drive so its going to be up to my son. When I was that age I loved to drive, so hopefully it wont be too bad for him. I have already been in contact w/ the American Cancer Society, unfortunately they have no volunteers in my area. They were a huge help w/ covering the co-pays on my medication and will help cover my transportation costs. I live 32 miles from my hospital and w/ the price of gas its going to be costly goign daily back and forth. As far as work from home, I sure would love to do that. I really wish that was an option, but everything there is soooo top secret and confidential that there wouldnt be a way to moniter my calls. Sometimes I feel like I work for the CIA smile . I am going to make a list this week and every single person who asked me what they could do I will give them a job. I work in a large office and only about 20 people so far know that I have cancer. I am determined to make it in there one day during the week. I have several things to accomplish. First I must fax my FMLA forms to get my abscences covered. My next goal will be to give the ones who offered jobs that they can do. I love that idea, I am now in the right frame of mind to take them up on it. Even something like picking up groceries will take a load off me. Thanks for the ideas and making me feel much more hopefull!!!!!


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
#35414 07-29-2007 02:13 PM
Joined: Jun 2007
Posts: 718
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Christine,

I understand all of your fears and concerns, they are all very valid and I am glad you are sharing them instead of bottling them up.

I had a few thoughts I wanted to share with you, I don't know if they will help or not.

-Acknowledge your neice's fear and sadness, and then tell her what you need from her...optimism and help!! Tell her you need a team that is larger than your two kids, and that you need her to be a big part of it.

To be honest, this cancer sucks...I cry all the time...usually away from my husband, occasionally I tear up in front of him. I cry often in front of my kids, my neighbors, when I am alone in my car.

My tears don't have anything to do with negativity...it's just fatigue, frustration, helplessness. My husband is stage 4 and I believe he will survive this. Cancer and crying...they just seem to go hand in hand at times.

-Realize that you are not down and out of work yet. If your company is flexible, you might have several good weeks of work in you (I think you said in the past that they can give you computer vs. phone work...I know it hurts to talk). Also, Amy's suggestion to check out a work from home option is a good one.

Some people have a really hard time with Cisplatin, some don't. My husband went on short weekend business trip 2 weekends after his first Cisplatin treatment. So, while it's good to prepare for the worst, realize that things might go better than expected.

Radiation side effects usually don't kick in until later in the treatment cycle. Some people are able to work for quite some time. Schedule wise, it is easier to work around the treatment appointments than the endless number of consultations pre-treatment.

BTW, did you get some Ativan for the radiation treatments? When they fit you for the mask and for the first few treatments...even people who aren't claustrophobic can feel claustrophobic. My suggestion is to get Ativan (or whatever your medical team prescribes) and use it prior to your mask fitting. Your RO is probably the best person to talk to about this. Or, in our case, I have a great Radiation NP who writes our our Rxs.

-What everyone is telling you above...do not discount. If people offer to help, accept any and all help. Think through specifics. A difficult thing to deal with is open ended offers of help.

So, be prepared, when someone says, "I'd like to help, let me know what you need."...Be specific with an answer...you need meals for the kids, someone to drop off and pick up RXs, an occasional ride to the hospital to give your son a break, someone to run errands or drive your daughter somewhere.

People will step up to the plate, they just don't know what you need. Sometimes people don't know what to offer...and, sometimes it is difficult to ask for help. But, if you can give people who offer help specific tasks...it will make everyone happier.

And, if anyone offers something specific...accept it. I kept pushing help away at first...and, now I have learned to say yes always. And, life is a lot easier.

I had to have someone sit me down and explain that it makes people feel good to help and that I needed to accept more to help other people who were feeling helpless in dealing with this too.

Have your co-workers offered to help? Do you have any neighbors...or family that is a little farther away but could come and stay for a few days here and there? Do you belong to a church or any groups?

-Stay connected here!! While I wish you lived closer and I could physically help you...I and others want to support you emotionally. Please let us do that.

-As far as getting your kids engaged in helping you (putting some of their wants and needs aside as you mentioned) my suggestion is to start a blog.

I started a blog on blogspot about my husband's fight with this cancer. The intent was to keep my husband's family and friends updated on Dan's progress. But, it quickly turned into a tool to help involve my kids in their dad's care...and, to publicly acknowledge their contributions.

My kids read the blog daily and both kids like it when I include them and feature them with pics. (Digital cameras are really a great thing)

It helps to make them feel important as members of the family and as part of my husband's team...as so much attention is going to my husband instead of them this summer.

If you like, I could help you start a blog...it's pretty easy...perhaps your neice could help you send your blog out to interested people.

I love the suggestion above about someone's daughter listing specific suggestions for help. You could have that on your blog.

Or, perhaps, your daughter could help do upddates for the blog as a project?

I never thought many people would view the blog, it was meant as a private family thing...but, it got forwarded to so many different people. And, as a result, we have had a huge outpouring of support, offers of help and prayers!

Christine, you are not alone, the people here at OCF are with you in spirit and prayer.

I, personally, have you in my thoughts often. Getting through this as a mom and relying on your kids sounds tough.

I hope you will post often during treatments...we'll all want to be here for you!


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
#35415 07-30-2007 02:34 PM
Joined: Apr 2005
Posts: 2,219
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Christine,

So sorry to read about all that you are going through.

I was wondering where in PA you live. Although PA is a big state and the odds are slim that you live nearby, if you do, I would try my best to help you out.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
#35416 07-31-2007 09:08 AM
Joined: Jun 2007
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Im in Lehighton, PA. Im home from my surgeries. Doctors say they went well, but I hurt w/ stomach spasms and generally fell lousy.
Tomorrow will be better.


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
#35417 07-31-2007 09:14 AM
Joined: Jun 2007
Posts: 718
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Posts: 718
Hi Christine, I was thinking about you today. I'm glad your home, sorry you don't feel so good. But, you have the right attitude, tomorrow will be better!


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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