My name is Linda, 55 yrs young and my partner of 24 yrs, Carol, is 55 yrs young and was informed on 12/22/09 she has oral cancer. We weren't told type or stage of cancer.

If I may give a little background about Carol. She had a radical mastoidectomy of her right ear when she was about 10 years old. Always in and out of hospitals growing up. She has a tube in her right ear for drainage. She also has sinus problems. Smoker and beer drinker. Always worked hard, doesn't believe in asking for help, always helping others. Doesn't know those 2 letters - N O - (No) .

In July 2009 she got a pain in her left ear that as quickly went away and dismissed it. A few days later while walking into work she stumbled, a co-worker accused her of being drunk and had her sent home. Carol understandably got upset about the accusation but thought that her equilibrium was way off. (Not too many people know or should know about her ear as far as she's concerned.) October her mouth got sore, went to a walk-in clinic, dx with a bacterial infection, given pills. Went back three days later, was given liquid Rx and the Doctor recommended she get Kefir, a probiotic liquid. By Thanksgiving she was having difficulty chewing solid foods and getting sharp pains in her left ear.
I managed to scrape money together and saw an ENT on December 8. He examined her, didn't like what he saw and did a biopsy, taken from back of her throat. He said treatment can be done with radiation and/or chemo and surgery. He also told Carol not to quit. (I guess he saw the look in Carol's face, that she KNEW it was cancer.) The Doc didn't charge for the visit or biopsy. To our surprise Carol received a phone call from another Doctor's office the next day telling her she had an appointment on December 11 at one of the local hospitals. On December 11 the Doctor examined her, told her about treatment options, and to come back December 22 for the Combined Tumor Board. And she was to have a CT scan before the 22nd. The results of the biopsy were not in yet. The Doc Rx Tylox which she is still taking (new Rx on Dec 22). On December 22 we met the Combined Tumor Board, the decision of treatment could not be made because the work order for the CT scan had not been submitted. However, the decision is leaning towards radiation and surgery. Carol was told that it is Oral Cancer on this day, but was not told type or stage. Could this be because the CT scan had not been done? The CT scan was done on December 23 and Carol is scheduled on January 5, 2010 for the Combined Tumor Board unfortunately due to the holidays. Carol can not eat solid foods, can't eat anything soft either, she forces herself. Can't have cold food or drinks. She does sip water. She's in and out of bed, can't sleep. I'm afraid waiting until next year for any treatment will make her chances for survival less. I'm getting to the point of taking her to ER, and she just wants the pain to "just go away".

The hospital has a contract with the city for indigent people and Carol was lucky enough to be awarded a full contract (minus $10 co-pay for ER). Another story and red tape. If it wasn't for this contract we wouldn't know what to do. We can't have second opinion because of finances.

I've started the process for SSI and Disability (SSDI), Medicaid is next and then any other source I can find to help Carol. But it is very frustrating because of abuse of the system by some people, the current economy and our relationship. (Please don't take offense to the latter).

I found this site googling and it is very insightful. This is my first forum posting. I am open to any and all suggestions, feedback, etc.

Sorry. The angry smiley wasn't meant to be. Is there a way to change it?

Linda,

The relationship you have with Carol is what we term "Care Giver" that is all that matters to us here on this site.

As far as waiting until the 5th for the tumor board, that amount of time is not out of the ordinary. If you need pain meds until then, any local doctor or clinic should help you out given the diagnosis. Pain meds will be a part of you life for the next few months at the least and don't feel uncomfortable about asking for what Carol needs. This is a painful process your doctor should understand.

Hot and cold liquids are not going to be a good idea for a while but you can get liquid diet supplements at wal-mart or your local grocery store. Try Ensure, or Boost or carnation instant breakfast. Try and have Carol get these calories down every day with lots of water.

Others on this site will add a bunch of additional information for you.

Sorry you have to join us but you will find this to ba a very special place with very special people that care.

Kelly

Linda
Welcome to OCF. You will find the guidance and support you are looking for. I will try to give you some help. Regardless if she was a smoker or drinker, it would not change the treatment. The biggest thing is to get rid of the cancer.

The one thing that stuck out in your post was when you wrote the biopsy results were not in yet. Maybe I missed this but, a biopsy is the only way to tell for sure that its cancer. Your partner Carol cant KNOW its cancer. From what you wrote she seems to have taken all the tests and doctors visits very seriously. Do you think she could be depressed? Im concerned about how she went downhill so quickly before all the tests confirmed it was oral cancer. From your post, it seems the doctors are telling her she has oral cancer without any biopsy results. It makes no sense how they would develop treatment plans without this info.

I was diagnosed with oral cancer 2 weeks after I went on a 25 mile mountain bike ride. I was feeling the best I had in years. I KNEW it wasnt cancer this time, guess what...I had cancer. Only the biopsy could confirm this. How I wish it was wrong.

If Carol is in pain, she needs to speak up and ask the doctors for medicine. If she is unable to eat and drink she will feel awful. Lack of nutrition and hydration will have her end up in the hospital. This is something that must be taken very seriously. Pay close attention to her intake. If she does have cancer as the doctors suspect, she will need a minimum of 2500 calories and minimum 48 oz water per day. If she is unable to sustain herself she most probably will have a feeding tube placed. Its nothing to be scared of it will help her. My diet consists of eating smooth yogurt and chocolate pudding. Maybe drinking ensure or carnation instant breakfast will get her calories up. I have a feeding tube and use it to keep my nutrition where it should be. I have a list of easy foods that I posted a while back.

Here is the link....
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=106312&page=1

You could also try making this for her....
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=109148#Post109148

I know it seems like next year is forever, but it sounds like things are progressing at a good pace. Its not going to change anything by waiting. Worrying will not change the results. Please try to make the best of every day.

Another thing that caught my eye was if she is in that bad of shape, then she should be in the hospital. While this site can help you with info, we are not doctors only patients and caregivers. We try to help thru our own experiences. Please keep posting any updates you have. Best of luck to you both and try to have a happy holiday

Listen to everything Christine said.
You have come to the right place and am sorry you had to join us. I will be the first ones to tell you that she needs to get that nutrition in her system. I began to get lightheaded and knew I was in trouble and had to force myself to get in the nutrition. Please make sure she is getting in enough fluids and nutrition. If you have to take her to the ER and let them evaluate her to see if she needs hospitalized.

Kelly211, ChristineB, walknlite, thank you all for the information. I'll get to the store first thing this am and pick up some Ensure and/or the other items. And thanks for the links ChristineB. I've been reading the forums here but hadn't come across those links yet.

As for the biopsy results I guess the Dr won't tell her until he gets the results of the CT scan. She will find out at the Board on Jan 5th. The nurses said once a dx was made everything happens real fast.

Carol's trying to keep upbeat and the holiday routine hasn't changed too much. She's a tough cookie.

I will definitely be posting on this site. It sounds like there's a lot of caring people.

Merry Christmas and Happy Hew Year to all.

ElCee,
welcome to the forum. u found the right place. this site is Godsent!

Carol has a long road ahead, but u too, as her caregiver have a long road ahead. this is tough on caregivers. please feel free to rant, rave, scream, and cry here.

ask alot of questions...u are going to have them. one thing i like about this site is the fact that they do KNOW how u are feeling since they have been there.

we welcome u with open arms! keep us posted on Carols progress.

The bio should be all they need to tell you the type of cancer and it's most likely squamous cell judging by your post.

Re the liquid drinks, the Carnation Instant Breakfast VHC which has a whopping 560 nutritionally balanced calories in the same 8 oz can must be ordered through a pharmacy dept at a drug store like Walgreens or CVS or online and you don't need a prescription. Shop for the cheapest and it only comes in Vanilla but just make sure it's the VHC and has 560 calories. Getting the most calories per effort is important when her throat hurts so only having to swallow 4 cans of the VHC vs 6 of the others makes a big difference, at least it did to me.

@ homershoney. pleasure to meet you. I've been reading the forums here and googling for info. just needing to get a jump on what Carol might go through based on what the Doctor has already told her.

@ davidcpa . thanks for the info on the nutrition drinks. After reading ChristineB's links I bought Ensure, Boost and the Carnation Instant Breakfast from the grocery aisle. Carol is able to drink them, but with difficulty. I will check out the carnation VHC.

At Carol's second Tumor Board on the 5th of Jan I'll make sure Carol gets all the details on the dx and tx. She's in too much pain to ask questions, doesn't know what questions to ask and she's scared even though she won't admit it. She was just told oral cancer and the treatment options such as radiation and/or surgery. They took the biopsy from her left tonsil area and said her left bottom middle part of her jaw would need to be removed. All the details will come out on the 5th. The Doctor was upset because the CT scan had not been done prior to the tumor board on Dec 22.

Thanks to everyone's input. I'll be posting more after the 5th.

Linda,
If you can, go with Carol to her meeting with the tumor board in January. Another set of ears is always helpful and you can ask the questions she is afraid to ask. Getting this diagnosis is usually such a shock, our brains cease working and all this new stuff is difficult to digest. Keep us psoted on what you learn and then update your signature line.

Take care,
Eileen