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#115318 04-11-2010 08:46 AM
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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

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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.


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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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.


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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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


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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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

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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


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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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


Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
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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.


CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
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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


Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
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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

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