Hi I have been reading this message board since my mom came down with Oral cancer for a few years now.
You have educated me and for that I'm very grateful.
Mom is 83 now and has been our miracle surviving Lymphoma stage4 25 years ago.
Now she has Oral cancer since 11/2008. She has had chem/Radiation
and then a tumor showed up in March 2012 where they took it out. Well another tumor has appeared and they can no longer do any treatments she has had her limit. And they have opted out of having the Jaw removed and are going to let her go now.
My question: What is she going to be going through until the end? How long will it be? I don't want her in any pain and I don't feel my family is totally aware of what to expect and I needed some straight answers so I can help them prepare.
I love my mom she has dementia from all the treatments but I don't want to see her suffer what can I do?
Gerri,
I'm so sorry to hear about your mother. Oral cancer and its treatments are brutal. I just lost my 84 year old mother to Alzheimer�s disease (dementia), which is even worse that OC in many ways. She suffered from dementia for a few years and really went downhill really quick this year. She also lost her ability to swallow as part of her decline and at that point we honored her final wishes and got hospice involved. If you haven�t done so already, I would highly recommend contacting a local hospice organization. It was very painful to watch someone die like that, but in my mother�s case she had no quality of life and as many have put it �it was a blessing�. Hospice can help her and you get through this part of her life and will try to keep her as comfortable as possible. My mother did die peacefully in her sleep and was not in any pain.
I wish you the best.
Gerri, I'm so sorry to read this about your mother. Please let us know how we can help. I've never personally dealt with hospice but I know that it's a wonderful resource.
Thoughts with you.
Currently my dad is her caretaker but since we don't know what's to come next were not sure when Hospice should be called.
We don't even know how fast this is going to grow she is at the point now where all she wants to do is sleep and Dad said that he see's her holding her cheeks a lot and they appear pinkish.
They see her Dr's Thursday but I don't know if they will tell him these things or if he will ask. I feel there is a little denial going on with my Dad.
So any guidance is appreciated. And thank you very much for your kind words it's just a difficult time and I want to help.
Gerri
Hi Gerri,
First let me say how sorry I am to hear about your mom. I just lost mine in April to this disease and I can tell you, it was really hard. Hospice is a godsend, they do everything in their power to make the patient comfortable as well as helping the family. The cover every aspect of care, including pain management, comfort, spiritual, and are available 24 hours a day. They will teach you and your family how to best care for her when they are not there, but will be there as soon as you need them to be.
Every patient is different, there is no way to predict how long it will take, even my mom's doctors said she had a matter of months and she was gone in 3 weeks. The most important thing is you spend as much time with her as possible and you get hospice started as soon as possible to allow her as much enjoyment of the life she has left. While I can not say any of my mom's last weeks were "enjoyable", she was very alert regardless of the morphine because hospice focuses on managing the pain, not doping them up. We had countless hours with my mom where we could have very meaningful and heartfelt conversations, though not always lucid conversations, she wasn't sedated like we had initially worried about.
You will find the right balance, with their help, and you will be able to give her the care she deserves. I have no doubt about that. Please feel free to ask as many questions about this process as you need, I don't want to ramble on for hours about my experience because it may be totally different from yours. But it was just a few months ago, and very fresh in my mind, so I could easily share more with you.
Hang in there, it's not an easy road to travel, but you will be ok.
Amy
Hi Gerri. So sorry to hear about your mom. I lost my 76 year old mom almost 5 years ago to pancreatic cancer. My mom died at home under Hospice care. We were told that Hospice is to be called in when someone has a terminal illness and will no longer be undergoing treatments. Your mom's doctor is the person who can write the "orders" for hospice. Contact him and get things started. Just be aware that hospice is a wonderful resource but they are not there round the clock. Best wishes. Wanda
I'm sorry about your mom... And the path all this has taken. The advice given to you is invaluable. No one can tell you - not even the drs. How much time it will take, or what your mother's journey will be, but definitely get a hospice involved to make it easier for her and you. I understand your father's denial they've been together a long time and the prospect of losing your mom must be devastating. Enjoy whatever time you can with your more, and father. (it will help him to have you there) hugs and blessings to you all.
Have you gotten another opinion from a CCC? Many here have been reradiated.
I want to thank you all for your help and support with this time concerning my mom. The common comment here was Hospice and I agree. What problem I run into at this point is that my Dad (A proud loyal man) feels that he can take care of her himself and honestly I don't think he has any idea as to what to expect in the near future.
They live in Montana and I live in California so I am not able to run up there and help out or even ask questions to the doctor. I do try and feed my dad questions to ask and he does try but I'm worried that this will have it's toll on him too if he doesn't get help.
Mom has a wonderful oncologist who has been at her side since lymphoma 30 years ago, he treated her 3 years ago and said that this may only give us added time with her. In March 2012 he said that her body can no longer take anymore chemo/rad treatment (she had a very difficult time during her treatments) So I'm grateful for that.
I just don't know what or how to lead my father to the correct path for her comfort.
How do I go about finding a good Hospice group?
What are the requirements that I need the doctor to submit for us to get this going?
They were thinking of driving down to California for one last visit with all of us but with the speed of this cancer would she be ok driving for two to three days? she has no pain right now.
She is on a feeding tube and has been for 3 years. The tumor is in the back of the side of her check.
I'm feeling not so alone in all this, thank you all so much.
Gerri, I am so sorry to read about your mother. It must be a terrible time for your family right now. I would suggest you speak to her doctor to see if she is able to make the trip to visit. Her doc should be able to tell if she could handle traveling.
Im not sure how to go about finding a good hospice in your area. If it were me, I would reach out to all of the doctors who were treating your mother. They may have contacts. I believe a prescription needs to be written for a patient to receive hospice services.
Gerri,
Your moms oncologist should be able to start hospice for her. There is often a hospice service affiliated with the hospital he or she is associated with. When my mom's oncologist called in the order for hospice they called us the very same day.
Your father will most definitely need help caring for her. Hospice will not be there 24 hours a day so that may help him to feel like he is doing the lion share of the caregiving. Do you have any other family that are nearby your parents that could help out?
My father is being a very head strong man and feels he can take care of her and please trust me he has done a wonderful job.
I have taken your advice and sent him an email requesting that he address the Hospice assistance now so it will help prepare for the further path ahead of them.
No other family lives near them and it drives me nuts when I suggest he needs help with her and his pride gets in the way. However I am writing him so that he will think about it and perhaps see that these needs should be addressed.
If the doctor feels she can't travel I am prepared to fly up there and work virtual for a week at least just to check on her myself and try to work with him in understanding the grand picture.
Thank you all for your sound advise and strong shoulders for me to lean on. Tomorrow I shall know more.
Gerri
Gerri,
You are a wonderful and caring daughter and doing all that you can. I had mentioned previously that my mother just passed away from Alzheimer�s (June 2012), but a few years earlier she was the caregiver to my father who also had Alzheimer�s (he was 5 years older than her and he died in 2006 also at 84 years old). She took care of him for about 4 years before he died and that did have an adverse effect on her health. He was in and out of the hospital, nursing home and then back home again. After my father died that is when my mother started to go down hill and showing signs of Alzheimer's.
My parents had other family members in the area (their brothers and sisters) that offered support, but I lived 50 miles away. Being a full time caregiver is a very stressful job. You should also keep an eye on your father to see how he is doing. Hopefully he will be able to get out even if to go for a walk or visit with some friends. Men can be stubborn and headstrong � good luck and keep us posted.
Susan, I'm sorry you have lost both your parents it must be very heart wrenching. I know it's going to be hard that is why I'm trying to grasp the truth and deal with it now so I can help my dad more. We do have family so I'm thinking of getting them on board after tomorrows doctor appointment.
My dad works if you can believe that, he is turning 80 this November and is the county Judge (small town part time job).. He has a lot of stress and keeps saying he is going to retire but I feel it's his outlet which is good... The bad part is... should mom be left alone for 4 hours at a time? I'm not feeling good about that and need to somehow get that through his head without making him feel that we don't appreciate him.
Letting me get all this out sure helps me figure out what I need to do. Not too many people understand the depth and hardship this cancer has on families and I'm very glad you are all here. This board has taught me more than just reading medical internet sites. SO KUDOS TO YOU ALL!
I will let you know what happens tomorrow.
Thanks again... Gerri
Everyone's situation is different but my husband could not be left alone at all for about the last three months. Frequent falls, just out of it so needed help with everything...pain med admin, etc. My insurance would cover some respite care, that might be something to check into. Take care!
Gerri, my heart & prayers go out to you, your mom & dad. Nothing about cancer is easy or painless. I've been typing responses for past half an hour and keep erasing everything. Best wishes and take care of yourself.
I am just so frustrated perhaps because I want to know the facts and plan life.
My dad called my Brother after the doctor appointment but couldn't discuss much because mom was sitting next
to him in the car. ( Ok my mom is pretty much deaf at this point but nice that he was thinking of her... )
The Dr said that the cancer doesn't appear to be too fast acting of a tumor (Please note that her cheek is now becoming read and swollen after two weeks of finding out that it was cancerous).
Doctor said that he could give her a little chemo to perhaps extend the growing a bit slow things down.
Ok sounds good but my problem is: she didn't handle it well 3 years ago and was pretty sick, And wasn't that what triggered the dementia.
So is this going to move her faster into Alztimers. I'm very confused and will hear the whole story from Dad in the morning. Dr said that she can travel and to come on down.
I just don't want her to suffer with the chemo if it's just going to make her suffer in another way.
I know this is a no win situation and I truly want to be excited that we will have more time but is the Doctor doing the right thing? I have no clue.
Thanks for my venting session... your all so wonderful.
Gerri
What is
induction chemotherapy followed by definitive chemoradiation?
Gerri, I am so sorry for everything you are facing. It must be so difficult for you not being right there with your mother during this.
Your mother's doctor has her best interests in mind when he makes recommendations. He has her full medical history and years of training. Here on OCF, we are not doctors but patients and caregivers who have lived thru oral cancer. We do have more extensive knowledge than the average patient. But, we cant second guess your mother's doctor when it comes to the chemo helping her more than doing her harming. I wish I could help you with your question but it would only be a good guess. The hardest decisions are the ones you and your family will have to sit down and discuss. We are here for you no matter what the treatment decision is.
I think induction chemo is where the patient has a pump and gets chemo for a few weeks to shrink the tumors. Chemoradiation is when a patient gets chemo along with doing the radiation treatments. It could be 3 large doses or 6 smaller ones over the 6 weeks of radiation treatments. There are only a few here who have had the induction chemo.
Make the most of your mothers visit!!! Best wishes!!!!
induction chemotherapy followed by definitive chemoradiation= in my husband's case was 4 - 8 hour IV chemo treatments every 3 weeks, followed by 35 daily radiation treatments with 1 hour chemo IVs every Friday. they said because he was so young they were going to throw everything at him but the kitchen sink. ...and they did! Hang in there and hang on to each other!
Well I wasn't upset with the Doctor he has been amazing with my mom for all these years I think my issue was that I couldn't understand what my brother was passing down to me.
Today dad wrote the email explaining everything and I have more peace. The doctor feels that this tumor doesn't appear to be too fast acting which buys us time. They spoke of a chemo treatment that isn't covered by there insurance and dad said is very expensive. The Dr. did give her morphine in case pain starts up which it hasn't. They will be here Sept 3 so we can talk more a decision doesn't need to be made until the go back to the dr. on the 21st.
ChristineB I know you all aren't Doctors but you have been there dealing on the home front, suffering, searching and reaching out for each other giving each other the support that is needed. I came to the board looking for answers knowing full well I can't get them here but just wanted guidance on where to look. This board and the links that are associated with it has helped.
Thank you all for letting me reach out and take hold of the comfort you give each other and if there is anything I can do to help you please let me know. I would love to share with others more about this type of oral cancer it seems not too many are aware of it.
Gerri
Gerri, if your mothers insurance wont cover her necessary treatments call the hospital's business office. Many hospitals have charity programs they dont openly tell people about. They may have your parents fill out a form and then make a determination. Some facilities base it strictly on income no matter what a persons expenses are while others take into consideration a person's other obligations. Cant hurt to ask. Ive seen patients given a break with their medical costs just by speaking up and asking for help.
We are here to help you with info and moral support. Thats the greatest thing about the OCF forum, we all understand what you are going thru. Glad you got more info and have a better understanding of your moms doctor visit.
Hang in there!
[quote=Gerri222]Hi I have been reading this message board since my mom came down with Oral cancer for a few years now.
You have educated me and for that I'm very grateful.
Mom is 83 now and has been our miracle surviving Lymphoma stage4 25 years ago.
Now she has Oral cancer since 11/2008. She has had chem/Radiation
and then a tumor showed up in March 2012 where they took it out. Well another tumor has appeared and they can no longer do any treatments she has had her limit. And they have opted out of having the Jaw removed and are going to let her go now.
My question: What is she going to be going through until the end? How long will it be? I don't want her in any pain and I don't feel my family is totally aware of what to expect and I needed some straight answers so I can help them prepare.
I love my mom she has dementia from all the treatments but I don't want to see her suffer what can I do? [/quote]
I can now answer my own question. Mom didn't suffer the doctors were wonderful about the medication and my dad tried so hard to care for her. I was up there last week in hopes for a hug and I got it and she knew who I was. A memory I will forever cherish. We noticed that things were going fast and they day I flew home Dad took her to the hospital then to Hospice. They treated her so wonderfully. My cousin was there and sang my mom's favorite hyms, and each of us kids called her and dad put the phone to her ear and we were able to say we love you but its time for you to go now. Today My dad was holding her hand and said "You are so beautiful you are my sweetheart forever, go see Jesus" and she passed away.
Thank you all for being such a wonderful group and keep passing the information you gain to others. The world just doesn't seem to see all of this but we do and we can do our best to pass the information on.
Thank you again for letting me share.
Gerri
Gerri - I am so touched by your latest post about your Mom. She sounds like a truly beautiful soul and I'm so glad she had you and your Dad and the rest of your family with her as she passed into her next life. It must be so heartwarming to know how well she was treated by the doctors and Hospice. I hope that you and your family will be comforted in the days ahead by the closeness you all share and that the happy moments you were able to have with your Mom will help ease the sadness of her passing.
Hi Gerri,
Your post brought tears to my eyes. My 87 year old Mom lives with us and I just pray that at the end she will be able to pass peacefully. She does not have cancer at this point but has had lung and breast cancer 25 years ago.
Anyway, thank you so much for sharing and I'm glad she knew you at your last visit. What a gift!!
Blessings to you and your family,
Kathy
Gerri, thank you for coming back with your sad news. I know how hard this has been for you. Its never easy seeing a loved one hurting, it makes us feel so helpless. Im so glad you had a good visit with your mother and she was alert. That memory will stay with you forever. Try to allow the memories of happier, healthier times help to ease your sorrows. May your mother now rest in peace. My deepest condolences to you and your family.
I am so very sorry for your loss Gerri. My condolences to all of your family and her friends. I hope that, in time, your happy memories of all your good times together will ease your pain.
Donna
Gerri,
Thank you for sharing such beautiful news. I am so sorry for your loss but you were truly blessed in many ways as is evident in your memories and stories. I pray for comfort and peace for you and your entire family. May His grace be sufficient now and forever.
Ed
Gerri,
I�m so sorry about the loss of your beloved mother. I�m glad she died peacefully in her sleep and that your family was able to say good-bye to her. May your mother now rest in peace and may you take comfort in knowing what a wonderful daughter you have been. My deepest condolences to you and your family.