Hello:
I have been on here a few times, and always get good advice. My husband, Hubert, was diagnosed with Squamous Cell Carcinoma of the tonsil area in April of 2009, but the disease had been working on him for some time. We do not know how long, but probably at least a year. He had radiation, chemo and has a PEG tube since Sept. 09. The doctors said in Feb, that he has had all treatment, that the cancer has spread to his lungs and then he sent us home with Hospice help. Hubert has grown continually weaker, but is still able to care for himself pretty much. He has terrible swelling of the face and neck, pain from the tumors, is getting short of breath and having difficulty with balance. He also coughs up huge hunks of bloody tissue that looks like blood clots. We are wondering just what we can expect as this grows worse, and if anyone has any idea of how long we may have. The doctors said 4 to 6 months, but I am worried that things are progressing very rapidly, and want to be as prepared as I can. No one answers my questions. Do any of you have any ideas for me?
Thank you for any help.
Tammara

Tammara --

How sorry I am that you all find yourselves in this situation.

There are two lengthy threads that may be helpful to you: by Cookey (Liz) and by JAM (Amy, who also lives in Arkansas). Each is very honest in describing the physical and emotional changes in both the patient and the caregiver, and they may provide you with information that could prepare you for the weeks and months ahead.

Other threads in the OCF Cancer Blogs forum cover these issues as well, but these two are particularly detailed and memorable.

Tamara
the facial swelling can be controlled by steroids .Robs face was absolutely enormous but returned to normal within a couple of days of steroid treatment,this also relieves the pressure on the wind pipe.I have to say with what you are describing 4-6 months sounds a little optomistic,but no one can possibly guage the fight these men of ours have in them.Its distressing and hard to cope but if you need any help or advice or just a shoulder to cry on,please get in touch.

Tammara,

Liz (Cookey) is probably the best resource for you on these forums, I would get in touch with her to help with what to expect and for support. She is truely a wonderful person and an inspiration to many here, including me.

My thoughts are with you and your husband

Eric

Liz: Thank you so much for your comments. I have just never been through anything like this. Lost grandparents but they were in their 80s and 90s. This is so hard to watch. I will ask the hospice nurse about the steroids. That is a good idea that I would never have thought of. I am praying that we will have at least until school is out at the end of May. I hate having to go to work every day and leave Hubert here, but someone has to work so the bills can stay paid. It is just so hard watching this once hardworking and active man sleep and in pain all the time, and knowing that I have to leave him here alone every day. I appreciate the shoulder.. Thank you.
Tammara

Tamara it pained me to read that you have to leave Hubert and go to work every day.That is an emotional upheaval that you could do without really although i guess if you still have some months to go it is not so bad as us who only had days from his recurrence.The time you have left is so precious and can lay down the foundation for coping once you are alone.Have you discussed what he wants and how he feels,because you really should be clear in your own mind that when his time comes you have no unresolved issues and you have said everything you ever wanted to each other.If you don't this will come back to haunt you in the months to come,and its something you can't go back and do again.

Does your job have a compassionate leave entitlement?If it has you should try to get some definitive time line from the hospice that will let you know when communication might become difficult so that you can make sure you get these much needed conversations underway.

As for no one answering your questions Tamara,that will never happen here and should not be happening in the hospice.Keep asking until someone tells you what you need to know

love liz

Hi Tammara,
First, I am so sorry you are going through this. There is nothing harder than watching your husbands decline. I agree with Liz that you should look into taking a leave from your job. You will never get this time back. It sounds as if you work for a school system, as I did. Have you asked about FMLA? I stopped working about 3 months before my husband Ron passed away, and I would not change that decision for anything. One thing that needs looking into is the level of Hubert's pain. If you have Hospice involved, his pain should be well under control.
I do hope that you still have 4-6 months, but just be aware that it may not turn out that way. Ron was considered terminal, there was mention made of about 3 months, but he died within a month, very quickly. I thought I would be prepared, but it was literally a half an hour and he was gone. None of our children even had the chance to get home before he was gone. We had not involved Hospice yet--I thought we still had some time to do that. My thoughts and prayers are with you and Hubert. Please come to the boards for the strength to get through this. We are here for you.
Lori

I am so very sorry that your family is having to go through this. I agree you should take time off to be with your husband, as much as is possible. Please take the comfort and advice offered from the wonderful people here - it is priceless. I will be keeping your family in my prayers. Take care.

Tammara -
I'm so sorry you have to go through this, but you know here is the right place to find answers and support at this difficult time. You're in my thoughts and prayers.

Marlene

Hello:
I so appreciate all of the kind words. I am still working. My job is at a school system, but I teach over a television, and work on a college concurrent credit system. That means we teach on a college semester calendar. My kids are seniors and juniors in high school all over the state of Arkansas. I have four more weeks to go. I can take FMLA, but that is UNPAID leave. In the financial situation that I am in right now, I just cannot afford to take unpaid leave. We will lose everything that my husband has worked so hard for. I just cannot see that. So, we are coping. I am just afraid that we will not have much time together when school is finished. Hubert gets weaker every day. He sleeps a lot during the day, but still is up and around taking care of himself, the dogs, cats, and bringing me coffee every morning. He is a strong man. I tell him I can do that, but he says he needs to be useful, so I let him do what he wants to do. I am just terrified that something will happen to him while I am working. His nieces and sister have been coming to the house pretty regularly to check on him and our daughter comes twice a week to stay with him for a few hours as well. He likes the company, and does better on days that there are visits. He has a CNA for a few hours every day too, so that is a blessing. He takes his shower while she is there so that if he needs help, someone will be there. We will get through this... God will take care of us.. Thanks for all the support.. Tammara

Hi Tammara, not sure if this helps or not. Last April we found out that my wife was terminal and as I pressed for a timeline was told typically a person with her diagnosis would have about a year and in her case hopefully longer with receiving treatment. Without treatment, would anticipate four to six months. She has been receiving chemo atleast every three weeks, gone through numerous chemo drugs but has just past the year mark and as I again pressed for where we are at, were told that six months of "good" health would be reasonable. My estimate is that she sleeps around fourteen hours a day and generally doesn't have a lot of energy but that still leaves us seven or eight hours a day of time together once I come home from work. Our schedule may be very strange where she will often sleep until one or two in the afternoon, catching a short nap while using the feeding pump and then staying up until one or two in the morning when her nightime feeding ends. I guess just trying to say that even if you do need to keep working, try to optomize the time you have together.

Don't know what type of support system you have but something that helped us immensely was that family, friends and coworkers held a garage sale, bake sale etc. that raised some money for us that allowed me to take some time off work. For us this was at the early part of diagnosis and treatment but think that if your friend knew your situation, would love to come up with ways to help. If that is not an option (or even if it is) try contacting the American Cancer Society to see if you can receive some help with the medical bills and try to come up with a way to take some time off unpaid while his health is still holding up.

So sorry that you are having to deal with this, will keep you, your husband and family in our prayers.

Tammara-I just read your post as I do not come here as often as I should. I also did not get a timeline-even when my husband was admitted to a Hospice facility. They truly cannot tell until the end is very close. I too wanted specifics but wasn't given any. if you have any time try to read "Final Gifts" by Maggie Callanan. I read this after my husband passed but wish I had known about it before. It helps you relax and pay attention to what the person is saying. I tried too hard to pay attention to the physical issues instead of the spiritual ones. Maybe that was all I could handle at the time. Please let me know if you need to talk to someone-I'm available and have been where you are. Peace and strength, Sue

I am sorry for you and your family Cookey is the best one to talk to about this. Your family is in our thoughts and prayers!! Semper-Fi Bob

I admire Hubert very much for his gumption and you for doing your best to help while you still have a job to do. You are both special people in the scheme of life as we know it with OC. I hope the cancer Society can help you out or have an idea who can. Got you both in my prayers.

Cookey:
Your posts here make me feel so much better. I know that you have been through this same thing, and have seen how devastating it can be first hand. I have taken Family Medical Leave from my job and am at home now full time with my husband, Hubert. It is unpaid leave, and we will struggle financially for the next couple of months, but it is nothing that I cannot handle. Hubert continues to be in pain regardless of the amount or type of pain meds they have him taking. His eye is swollen nearly shut. He cannot hear or see from the right side at all. He is sleepy all the time from the meds, and is still taking his tube feedings. We are though, enjoying our time together. I am happy that I can be the one to help care for him at this time. I don't know how much longer we will have, but for whatever it is, I will be thankful. Smiles... Tammara

Tammara, my thoughts are with you.
David

I'm so glad you're able to be at home with your husband - I'm sure you will never regret that decision. I know it has to be so hard for both of you but know that you will truly cherish your time together. Enjoy it. I will be keeping you and Hubert in my prayers. Take care.

Nancy T