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...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

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

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

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

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 . 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,

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!

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

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.

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!

Christine...I've thought about you so much over the last few days...I'm sorry you're feeling bad...we are having a gorgeous sunny day in the WNC mountains...I so wish I could bottle this up and send it to you!...I'm sure it's hard to keep your spirits up right now, but the old saying, one day at a time, just covers it all...the reality is sinking in faster and faster for me...soon I'll be where you are and hoping to hear from you with good news about your rapid recovery...give me a light at the end of the tunnel like so many are trying to do for you...hang in there, girl and show us your stuff!...many hugs, Katie

Today was better than yesterday and tomorrow will be even better. PEG tube and port werent quite as easy as I expected, I ended up staying overnight in the hospital cuz of the stomach spasms and pain. Was given hourly morphine shots which helped tremedously. I was released on Tues. morning, my doctor wouldnt let me have the teeth removed due to worrying about infection going into the new port with is reight by my heart. He gave me a special very potent antibiotic to take right befor teeth got pulled. That was today, Had my hearing test, picked up flourdie trays and had 3 teeth removed. One thing I hadnt thought of is a visiting nurse. My insurance covers 30 days of having a visiting nurse come to check on me and help me with the PEG tube. Today she came and for right now it will be once a week. She said I can always get it extended past the 30 days if we both thing its necessary. Tomorrow is Thursday and I cant wait, because I have nothing at all to do, no doctor appointments, phone calls or paperwork. I can rest all I want or even go outside to check out my garden, see how the squash and tomotoes are doing. Katie---you can do this, its life or death, it will be done and must be done. My idea of this whole thing is I cant be sick, I refuse to be sick Im only 44 and have teenagers to raise thats my purpose in life. I know Im going to go thru a few bad months and at times feels so low cuz Im very very scared of having to depend on children, this site helps me tremendously, especially Margaret, she is an angel sent to help everyone while she helps her husband fight his battle. Amy also is a big help she is very knowledgable and to the point. She will tell you what to expect. Everyone on here is here to help when they can. My light is thinking about trying to eat Thanksgiving Dinner. If that isnt possible, the it will be Christmas dinner or Easter dinner. (and Im not cooking this time either )

Chrisitine, Attitude is 1/2 the battle!! WE are all here for you. Keep posting and we will be praying for you. Its a tough battle but you will get through it. LJ

Hi, Christine, why don't you cook a "pre Thanksgiving" dinner before you start radiation- lots of soft mashed potatoes, moist stuffing and gravey. The dark meat from the turkey sould be fairly easy to swallow.Cranberry jelly to help it all go down. You are on your way to recovery! Amy in the Ozarks

Christine,

Seems like you are moving along at a quick pace now and that's important.

I'm in Bucks County and although that's not just right around the corner, it's not that far. If there is anything you can think of that I can do to help, I will try my best to get up there.

Jerry

Christine,

Seems like you are moving along at a quick pace now and that's important.

I'm in Bucks County and although that's not just right around the corner, it's not that far. If there is anything you can think of that I can do to help, I will try my best to get up there.

Jerry

Christine,

What great news on the Visiting Nurse front. That will be a big help, especially since you are so remote.

It sounds like you are in good shape to start on Monday. And, I'm glad you have time tomorrow to relax and enjoy the day.

You are going to be happy you got the port in. The past two weeks of chemo, my husband's usually cooperative veins were not very cooperative.

Amidst all of your medical procedures, are you keeping up with getting in loads of calories? Ice cream shakes, mashed potatoes and gravy, really creamy macaroni and cheese...and, all those other things they tell you not to eat in diet magazines? Those are all GREEN LIGHTS now and for as long as you can tolerate them!!!

How did your kids fare while you were in the hospital?

AMY you are the best! Thank you for the Thanksgiving Dinner idea, I love it! Im going to have one at my house on Sunday, I will get one last shot to eat what I can. Anyone is invited from this site who would like to attend, and its very casual. I would love to see the people who are in my area, Nellie, DonnaRose, and Jerry. If anyone elso would like to travel you are also welcome. Mashed potatoes and ham are my specialties. This is exactly what I needed, something to look forward to. THANK YOU EVERYONE!!!!! Let me know if anyone can attend Back to serious matters, Margaret, my children were remarkably fine without me for the night. You only have 2 more treatments to go, its almost over. Then let the recovery begin!!! I loved your website . My daughter stepped up and was responsible and helpful for me. My son has missed work all week transporting me to my appointments, tomorrow he goes back. They are going to do much better than I thought with this. Especially w/ having a nurse come once a week to start, it can be changed up to 5 days a week. The hospital will even send home health aides and therapists for family and personal counseling, all come right to my house all thru my insurance. Now I know w/ this type of support I will be fine to fight this battle and I will succeed. This is exactly what I needed to beat this.

Christine

Christine,

I too have read your stories , and I am sorry for all that you go through . And I myself am a mom of 5 kids under the age of 14 and yes it is hard, while I am not alone ..somtimes my husband isnt the best at dealing with all of this.

Kids are remarkable and they will see you through it in more ways the one !! Websites and Blogs are a great source of venting as well as this site. we are all hear in your corner pulling for you and even more holding you in our hearts. I dont know how far away you are from me in Ny ..how close to you to Binghamton ? I can try to do my best to do what you need. Right now I am working on a Thing for our local fair to raise awareness for this NASTY disease !! ANd trying to plan a reunion for everyone here as they so quickly become a family to us. Please know that we are always here !


Shar

Hi Christine,
I am a single mother too I had cancer of the tongue and lymphnod. I have a 14 year old son. I was lucky the cancer center was only 5 minutes away from me so I drove to my appts. My mom came for my chemo. I had my parents help with getting food and my son I had to go in for a neck disection in march and my friend came and watched my son for 4 days. Now I wish my son could drive because he could of took me to my throat dilations. My treatments ended last october but I am still on the peg tube and slowly recovering I lost 50pds. I know being a single parent is hard. Did you start treatment yet? I will be praying for you I trust in the lord to bring me through this. My son is a big help. Try to keep eating and swallowing as much as you can through treatment because radiation screws up your throat and your jaw muscles
god bless you
katrina

Hi christine, again
I am only 45 and I am too young to get this If you are in stage one I am surprised you have to go through chemo. I was going to suggest a pic line instead of a port it is a fancy iv in your arm it takes only 15min to put in at the hospital they said i could get that or the port i did not want to go in for surgery so i got the pic line. I had a nurse come in for 2 months thats what my insurance paid for. Are you doing the chemo with a pump you wear for 4 days so you can go home? I went to the hospital after my two chemos because i was dehydrated.
god bless
katrina

Katrina:

Im about the same age as you. Im, 44 soon I will be 45 in Oct. Im sorry to hear the hard times you have been thru. It good you have some help, with friends and your parents. At least your son is old enough to be a help to you. My left cheek is really bad and the top of my mouth both have cancer, at this point its spread to almost connect the 2 spots thats why I needed to have 3 teeth removed. I havent been able to smile for a few months, and I cant even laugh anymore or my cheek will split. Yesterday when I had the teeth removed, it was instant relief. I didnt realize thats what most of my pain had been coming from. I did have the PEG tube and port both put in on Monday. Why this is done usually on outpatient is beyond me. I got the port to save my veins, I wasnt offered the pic line. The port is right above my heart, so in cars I must ride with a big bed pillow and pray to god we dont get in an accident and the air bag goes off. My chauffer is my 17 year old son who thinks my little neon is a dragster. Im still sore and have a little bleeding around the PEG tube. Monday is when all the real fun begins. I start my 7 weeks of radiation and chemo 3 times. I get it once every couple weeks, so its a bigger dose of cisplatin. I already had my hearing test and know what Im in for. I know this can cause alot of problems also with hand tremors and dizziness, Ive done alot of research, I also know its what kills this type of cancer the best. I dont wnat to go thru this, but I will and I will win and be better than before because now I can say I have fought the toughest battle and won. You can stand tall and say you are a role model for anyone who has doubts they can succeed. Be proud, I cant wait to be where you are....on the road back !!!!

Hi christine,
Write to me on my e-mail. I used cisplatin and 5-fu twice. the radiation and chemo will make you tired. Have you been fitted for a mask?

GOD BLESS YOU