i have a question...my boyfriend has cancer on his tognue and some nodes in the neck seem to be affected and the dr wants to do a very extensive surgery.. what i want to know is if he doesnt go for the surgery and treatments how bad is he gonna be affected and sick from this?? he says hes 71 years old and and would rather have quality of life and be able to do things to the end not be an invalid..hes in a lot of pain on the left side of his face.. it is affecting the ear, neck, tongue, and pretty much everything on the left side of his head..he reads alot on this site and i wonder just what goes thru his mind when he reads this stuff... i know me, it scares the heck out of me some of the stuff i read..but i guess we both gotta face it...i just dont know what i can do for him.. and then when i leave the house i worry about him and feel guilty for not being at home for him...what am i supposed to do??

Barb,
That's the ONLY thing that worries me about this site---the Hell people describe! And also, I can assure you you'll get lots of posts telling him it's ugly/painful/messy/no quality of life to not TRY to fight it!--'Better to be alive after a fight than not here and what is quality'???

What you can do is take a deep breath and don't try to be God--you're a loving supportive partner, but this beast is here and don't go away without a fight of some sort, but you can't be fighting fit--whether for trying for 'quality' or going down the aggresive route--unless you are focussed and calm!

Worry won't solve anything, so don't even bother wasting time on that! Some meds for you, at whatever point, may help you to cope!

So what helps?? Everyone's different--for me:

My partner LISTENS to me, talks if I want/need to, carries on 'as normal' if that's what I'm doing at the time---so he goes to work 2 days as usual, lets me do the laundry when I want--but carries the bag for me if I can't. Asks me if I want something to eat, doesn't hassle me if I don't.

He teases me the way he always did, sends funny emails from his computer to mine--encourages me to go with him shopping---but accepts if I can't--carries his cell-phone always (hey, that IS a first!) in case I need him, and generally 'takes the cue from me' And just cuddles me and tells me he loves me---but not in a despairing, suffocating way.

Sometimes he goes "OI, you, you're tired, get your ass off to bed"---other times he finds something on TV or DVD that he thinks I'll like.

He looks on the 'bright side' as that's what I want to do---but has listened and will respect my decision when I and the docs decide 'nothing more to be done' I also have 'quality of life' issues--for me, stopping working and stopping to smell the flowers is great!
And the biopsy was huge and invasive---but 2 weeks after it---turned out enough crap had been removed for a lot of my pain and swelling to go down to manageable proportions!

He listens to the docs and care nurses--then looks at me---and nods or shakes. Occasionally he can't help it and his face registers horror---then I have a re-think for his sake! Oh, and for my kids of course!

I'm 'only' 58, but have brought up 2 kids to be independent, happy and successful, cared for both my parents as they got sick (Dad only died 2 years ago at 85, I'd been his sole carer for 3 years) and I've had a worthwhile job which may have made a difference to some lives.
I've made a lot of mistakes along the way, but basically, I don't have too many regrets, and my kids and partner all know that when I decide 'No more treatment, just bring on the pain-relief'--I really mean it and they respect my wishes.

No-one can tell you what to do love, for the best---ask your other half what HE wants and listen!
I have you both in my thoughts,
brenda

thanks brenda..sure sounds like you got a good partner that cares for you..hope all goes well for you..i guess i do need to just listen to what he wants.. i try but i sometimes think my trying isnt good enough..i do have a question...will chemo help any if he doesnt have any surgery??...i dont understand alot of this and i read alot on here to help me understand..

Barb,

There is SO much I have yet to learn about oral cancer. But, there are two things that seem to be pretty consistent...

1) Radiation kills this cancer, chemo helps the radiation be more effective...but, as of now, chemo alone can't cut it.

2) Make sure you are at a comprehensive cancer center where you have an RO, MO and Surgical ENT all working together with you and your partner to determine the course of treatment.

We almost made the mistake of listening to our ENT...his advice was to cut first and then we would have had to find someplace else to go for radiation and chemo.

Fortunately, our family doctor helped us find a place where there was a team of oral cancer specialists...who were able to quickly get the ball rolling. In my husband's case, they spared him the surgery because his source cancer was very contained.

But, like you, I'd have done or flown just about anywhere to spare him the radiation...but, that seems to be a necessary evil, especially when it is in the lymph system.

I'm sure you are doing great as his partner and support system. Brenda sure had some great insights.

The only part that I do not like is how hard I have to push my husband to eat or drink...when he'd much rather be sleeping. My husband wasn't in pain prior to the treatments, although he started feeling a great deal of pain mid-way through.

He just started the Fentynl patch and that has been a huge help. Are they giving your partner some good pain meds while he is figuring out his course of action?

Brenda, wow, you are an amazing woman. And, your husband and family sound pretty wonderful too. As a caregiver it was very helpful to read your reply to Barb.

Best to all of you,

It is a personal choice as far as quality vs Living . I can tell you from everything I hae read that it seems to be an painful and agonizing way to go. I had 25 % of my tongue removed and all the lymph nodes out of my left neck. I didnt have rad or chemo. I was nervous and didnt know if I wanted to do it ..I have 5 kids and I never felt sick before the surgery .

But it was my only way . I chose to go through with it . It was uncomfortable But I got througha nd I have a few issues but better then the alternative. So again I feel it is a personal choice and it is hard to watch the ones with love suffer. All you can do is be there for him and respect him and honestlt learn all tou can about this and all the options !!!


Just know that you have come to the right place for info and support !

Shar

It is a personal choice as far as quality vs Living . I can tell you from everything I hae read that it seems to be an painful and agonizing way to go. I had 25 % of my tongue removed and all the lymph nodes out of my left neck. I didnt have rad or chemo. I was nervous and didnt know if I wanted to do it ..I have 5 kids and I never felt sick before the surgery .

But it was my only way . I chose to go through with it . It was uncomfortable But I got througha nd I have a few issues but better then the alternative. So again I feel it is a personal choice and it is hard to watch the ones with love suffer. All you can do is be there for him and respect him and honestlt learn all tou can about this and all the options !!!


Just know that you have come to the right place for info and support !

Shar

It is a personal choice as far as quality vs Living . I can tell you from everything I hae read that it seems to be an painful and agonizing way to go. I had 25 % of my tongue removed and all the lymph nodes out of my left neck. I didnt have rad or chemo. I was nervous and didnt know if I wanted to do it ..I have 5 kids and I never felt sick before the surgery .

But it was my only way . I chose to go through with it . It was uncomfortable But I got througha nd I have a few issues but better then the alternative. So again I feel it is a personal choice and it is hard to watch the ones with love suffer. All you can do is be there for him and respect him and honestlt learn all tou can about this and all the options !!!


Just know that you have come to the right place for info and support !

Shar

Barb, my chemo is 'palliative'--have been told 'good result' will be to stop tumours growing, bonus would be to shrink them, miracle would be to cure them.
The chemo is, so far, bearable--little hair loss or nausea--the nausea was the thing I was dreading.
X-ray in 3 weeks will show if any effect on the lung primary
brenda

Brenda.. what is palliative chemo?? can chemo alone help or does he need radiation too? wish i know about this kinda stuff

Hi Barb

---basically, anything 'palliative' is to keep a person comfortable and symptoms under control for as long as possible--in my case, to stop the tumours growing for as long as possible so I can GET some quality of life--and keep it as long as possible.
My cancer is NOT curable (short of a miracle, and St. Bernadette got one of those, so am not ruling it out!) which is why Radiation and Surgery have not been ofered as options for cure.
Other options to come (also palliative) are small doses of radiation for pain in jaw tumour, pain control with drugs, and Hospice care.

You really need to talk to your care team about all options/chances and I'm sure you will hear the word 'palliative' if your man decides NOT to go for the surgery.

Keep asking questions--on here, and of your care team---and ask the same ones of the professionals as many times as you need to--take a notebook, write down answers and yell WHOA! if you don't understand!

This cancer crap is a whole new world, believe me--I can't believe how many questions I've asked already and how many new ones keep cropping up!

Take a deep breath and look after yourself
Brenda