Hello,
My husband was diagnosed March of 07. He has had two surgeries and two rounds with chemo/radiation. We recently were told his cancer has returned and there is nothing they can do. I've posted questions on this site regarding 2nd opinions but that is not what I would like to ask in this post. My mind is running wild with just how bad this situation is going to get. He currently has a new tumor growing under the floor of his mouth (under the flap they built with part of his leg tissue in last surgery) towards the chin area. I know this is an awful question to ask but I want to know what to expect. How does a person die from this? The Dr. sort of said the tumors sort of use up all the persons nutrients, energy, etc... until they get weaker and thinner. Then possibly phnemonia sets in. I'm picturing a huge tumor breaking through his face and him crying in pain, etc...etc.. I have two small children and I want to plan ahead for how bad this situation can get. I realize everyone is different but I am concerned. If someone would prefer to e-mail me privately and not post on this that is fine. He is also getting a trache put in next Thursday to assist in his breathing.
I'm so scared to watch my husband suffer. He is such a good hearted person who so doesn't deserve the hand he's been dealt.
Thank you for your help.
Sincerely,
Tamara(wife to husband Kyle)
Kyle - 44 years old. Non smoker, casual drinker.
03/07-Tumor removed in tongue, chemo/rad
06/08-Tumor removed in base of mouth, left jaw removed, part of skin on neck - followed w/chemo/rad.
10/08-New tumor already growing.
Tamara,
I am very sorry and saddened that you and Kyle have to go through this.
The hospice people will manage his pain and give him all of the dignity and normalcy that they can. They will train you and the other secondary caregivers on what to do and expect. He may also get some palliative treatment to reduce the tumors (and the pain) as well.
Since everyone responds differently to this disease it is difficult to tell you exactly what to expect.
Cachexia is a common form of cancer death. It is also known as "wasting" disease. Essentially the patient simply loses interest in eating and slowly the organs shut down. The pain center also shut down so the patient is usually not in terrible pain at the end. This is what happened to my father who died from Non-Hodgkins Lymphoma. Oddly, even though it is basically starvation he had no sensation of being hungry.
There are other scenarios as well and liz may wish to share her experience, or you can read her blog(s) at:
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=63591#Post63591and also
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=63463#Post63463
Tamara,
I am so sorry that you have to go through this. It's so very true that Kyle doesn't deserve it, and neither do you or the children.
Though I haven't been in your position, I did lose my Mom last year. I can tell you that Hospice was absolutely wonderful in every way. They were with her 24 hours a day, taking care of her every need and making sure that she was comfortable and not in pain. They also helped my brother and I and the rest of our family immensely with kindness, understanding, compassion, and anything else we may have needed. In fact they still write and call me from time to time just to make sure I'm alright.
I write this hoping that there is still hope through getting that second opinion, and I pray that there is. My heart goes out to Kyle, you, and the children.
Lani
Hi Tamara...I too would like to send you my thoughts and well wishes. I have not had the experiences you are going through but I do know it feels good to have support and caring from people in any form. I just wanted to let you know you are not alone and never have to be as long as this site is going there is always someone around to help. My best to your husband, your children and you. May you find the peace you deserve and need.
Tamara,
I'm sorry that your situation is so dire. I have nothing to offer you except my thoughts and prayers for peacefulness and comfort in this very difficult time for your family.
Tim
Tamara
the second link Gary posted is the one about Robins dying,and how it progressed.
i am here and happy to help if i can.My e-mail address is in my profile
liz
I had EXACTLY the same question when my dear friend, Andy, finally got on hospice care. I helped take care of him for the last year of his life as he battled glioma and was there for his last breaths at home. I cornered the nurses, and privately pressed them to tell me EXACTLY what I could expect in his last times. Many evaded the question, until finally, in tears I begged. One wonderful nurse talked me through the three possibilities, all the way through. He let me know what were the general signs and symptoms of each step. There ARE things you can know and I found it soothing to know them. It was still intense without all that fear. I am now a hospice volunteer and I would recommend you talk directly to your hospice staff. Be straight up with them and ask allllll your questions until you feel clear. I�d be happy to give you the straight scoop, from my understanding and learning. Just send me a private e-mail with your questions and I�ll be as straight with you as I can.
with deep respect for truth,
Thalia
Tamara,
I add my prayers to the others. I trust that you will find the answers to your questions. Hugs to the little ones, may they be a source of comfort and strength to you.
Malka
Tamara:
You have my prayers too. Im sorry your family is in such a terrible situation. Please lean on us for your support, we are here to help.
Tamara,
It's just a tragedy. We all wish we could make it go away but sometimes all the knowledge and experience in the world can't help. Let's hope and pray for a miracle.
Hello Tamara,
Reading your post made my heart ache for you and everyone who is going through this with you, Kyle and your children. I will continue to keep you in my prayers. I can't imagine the depth of fear and heartache you certainly must be feeling. We lost Eddie's dad this past spring to small cell lung cancer, the hospice team that came in were wonderful as they took care of him and made him as pain free as possible. I recall that they wouldn't answer his children's questions as to what to expect exactly, I think because everyone is different that is a tough question to answer. I believe your "family" here at the OCF will answer you honestly through all of their own experiences. I think I read above someone saying that here at the OCF you are never alone, I found that to be very true last year going through my mom's tx's.
I hope that you find some of the answers you are seeking. I think, well, I know I would be very much like you. I would need to know what to expect. Don't be afraid to share with the team Kyle has answers/suggestions you will find in reading posts from here. They are very valuable, anything that gives us hope is worth a try. I hope you find peace.
Much love,
Donna
Hello,
My husband woke up Saturday night and could not breath. He ended up at our local hospital with a traech (he was scheduled for one at UCLA but did not make it to the appt. date). The hospital here is convinced he has an infection too and have him on iv antibiotics. My husband has had yucky fistula's breaking through his skin on the outside and last week one broke inside just above his voicebox. This fluid makes him sick. I'm upset because I do not think anyone will be able to do anything about this drainage. I do not want my husband to be nauseated for the next few months and then the cancer starts to hurt. He feels good now except for this tummy problems. This just does not seem fair. I'm trying to reach our UCLA Dr. and have letters and medical records ready to go off to two other hospitals. I'm feeling like I can't do things quick enough and it's upsetting. Thanks for your comments.
I'm sorry for you and your family enduring this pain. I had to deal with Hospice three or four times and I cannot say enough good things about them. They can and will help. I'm sorry...I don't know what else to say....
Dear Tamara,
Please take advantage of the support offered here. If only for the hugs and strength we can send you. I, too, will talk to you any time by private message or phone. You have to be really strong now - be aggressive with the Docs and Hospice about pain control-- that's you job -- and be with him every step of the way. One caveat-- YOU must find time to rest. Amy in the Ozarks
Thank you all for your posts and the private messages. I know this was not an easy question to write an answer too. My husband felt pretty good once we got him home. I'm not sure if it's the fact he's off the antibiotics now (and the infection is still here) or just the tumor, but he keeps feeling nauseated. He's on meds for that but I worry the cycle of being sick will come again. Thank you all for everything. This site is a great help.
Sincerely,
Tamara
Hello Tamara,
I am new to this site so have just read these posts. I am like you in that I want to know the things that may happen so I will be better prepared.
I agree with others that Hospice is just wonderful. It must be especially hard dealing with these issues and being there for you children as well as your husband. It is so important that you find time to get proper rest and also time to just get out by yourself. Some may feel that is selfish but in reality you will be a far better caregiver when you take time for yourself. If you don't have a close family support system (I am blessed that way) take advantage of those Hospice volenteers.
My grandson, 11 yr is very close to his PA. I highly recommend two books by Maria Sheriver: What is Heaven? and What's the matter with Grandpa. The 2nd book was more to have him understand the alzheimer's that he has in addtion to the cancer. Please let me know how things are going with your family.
Emma
Ladies-please remember to take time for yourselves. I find this to be difficult and then I get overwhelmed and lose it. I don't mean that you have to go out but just sit and breathe or take a hot bath. I sometimes will try to go to my mom's just to chat if I know one of our teenagers will be home. This site is great to come to just to read and connect with others in the same situation. It reenforces the fact that others have been where we are now and they've come through. Sending out strength and hope to you.
In a former life, my mother-in-law had Alzheimer's Disease, and we did what we could to ease the load on my father-in-law. He finally got into a support group, found he wasn't alone and learned a lot.
One MUST take time for oneself in these situations; caregiving is sometimes like holding your breath, where the longer you do it the worse it gets...
Thank you all. It's hard to find time for myself between the little ones and my husband. He tends to like me helping him the best but understands when I need a little break. His brother is coming down tonight to stay for 2 weeks so I'm very happy about that. He keeps going up and down on his nausea. We just can't seem to figure out what is causing it and what helps it. I feel at this point that I know as much as the Dr's do. My husband gets upset because they all just want to throw new drugs at him and no one wants to discover the problem. Now, the local Oncologist is referring us to an "infectious disease Dr" to help answer the question. Does he or does he not have an infection still and maybe they will have an idea about the cause of the nausea. There are just so many Dr's involved now. They are going to try and get us in if they get a cancellation.
I better get back upstairs. Thank you all for your advice. The book sounds good. My daughter has asked about Heaven before when my mom passed away from cancer. I do not look forward to those conversations. I'm trying to just go day to day. I'm sorry everyone on this board has experienced this cancer in some way. It's such a nightmare.
Love, Tammy
Little kids are surprisingly pragmatic about this stuf because they don't really understand except maybe how it will affect them personally -- Don't sweat talking to your daughter; instead, view it as an opportunity for a heart-to-heart and an opportunity to educate her.
Tammy,
I'm not sure how old your children are, but my grandson was 3 when my dad passed away (he just turned 4 last week). We explained to him that his Papa was sick and he needed to be easy with him. Towards the end Jaden would ask when his Papa was going to get better. We told him that he wasn't going to get better but that he would be going to heaven and in heaven you are well again. Jaden doesn't understand the full concept that once you go there you don't come back. This past weekend Jaden saw a picture of Dad here and he picked it up, looked at it and said....I miss my Papa. When is he coming back? My explanations are simple. We took him to the funeral home. He did ask why Papa wouldn't open is eyes and why he wasn't talking. I guessed what amazed me the most is that my dad didn't look anything like himself but Jaden didn't seem to notice the physical difference and he still knew that was his Papa. But let me put a tiny bag of M&M's on the counter out of eyesight and he spots them right after he walks through the door.
I'm sure there are books out there that will give advice on how to explain these things to children. Maybe your pediatrician could recommend some. If your kids are school age, maybe the counsellor at school could help out? I'm sure at the very least they could point you to resources that would be available to you.
I beleive your kids will surprise you through all this and I believe you will find your stregnth in them. Hang in there and use this as a time to get closer to them. You all need each other right now. We are here for you too.
Joy
Ted Menten publishes a couple of good books for kids (and adults) that deal with death and dying. One that really helped me with my Dad's passing with melanoma was "Gentle Closings: How to Say Goodbye to Someone You Love". His other book " After Goodbye: How to Begin Again After the Death of Someone You Love" is a good one for... later. Check your inter-library loan for copies. Half.com has them for .75 used.
If anyone is purchasing books, please access Amazon through the button on the main OCF page. It gives OCF a small donation when you purchase items this way, this is especially important this year with the troubled economy. Donations are what keeps OCF here to help and guide so many, please dont forget to use the Amazon.com link.
http://www.oralcancerfoundation.org/products/books.htm
I have saved the page that comes up after clicking on the OCF/Amazon button as a favorite (bookmark, for Safari and Firefox users). That way I don't have to remember to come to OCF first when I make purchases from Amazon, and OCF gets the credit.
My mother was one that never had the chance to finish school. She raised 8 of us, 6 males and 2 fems. But she explained death to us and I think everyone of us remembered and passed it on to our kids and grandkids.What a smart lady she was. The whole neighborhood loved that lady. Don't know why , but I was her pick of the litter but she loved all 8.