I don't know where to start...... But I just feel a complete and utter failure as a caregiver / wife.
I sit here alone while my sick husband & wonderful 10yr old daughter are sleeping, and all I can think about is I don't know if I can do this again...selfish or what! Our 1st battle in 2005 I felt strong and determined, I went to every appointment,fought, pushed, cajoled, encouraged him every step of the way... this time around I feel sad,alone,misrable,scared, and completely defeated. My husband is moody, in pain and tense, and tells everyday he is going to die,and that I should find someone else, that this time the "C" has got him - My reply is always " we will fight this together, and we are going to win, and if you think you are getting rid of me think again!" (pity I cant take my own advice huh). I think deep inside he is giving up. His reoccurance is in a lymph node, that is also full of fluid and looks like half a tennis ball sticking out of the side of his neck, unlike the 1st time, I can SEE the "C" and it tears me apart. (We are 2 weeks into Chemo + Rad)and the throat pain is unbearable he says, the mouthwash he says does not help alot, and the pain meds need to changed So I will talk to the doc 2morow... I cannot understand why I am being so "me, me, I, I" and why a voice keeps shouting in my head, I can't do this again, I can't cope. I used to be strong, now I am scared. Last time around I didn't think for a minute I would lose him to this (probably stupidity) This time I am not so sure. His family live over the pond in the UK, so they are no help, my family are here but they just give me lip service,I once asked a small favor the excuses were real doozies........ I don't ask now. I guess I am a certified wreck & faliure - no use nor ornament. I wish there was a magic mouthwash to get me back on track. Sorry to ramble........

Sammie,
Allow yourself this little bit of time to grieve that this cancer has come back. It's difficult to get back to feeling "safe" after dealing with cancer.......then to finally get there and have it return is devastating, I'm sure. I'm also sure that you are hiding your feelings from your husband better than you believe you are.
After you get past the shock of accepting that his cancer is back, there are some things you need to do for your husband, your daughter and yourself. First and foremost, get his pain under control. That in itself will change alot of issues for both of you. Then see about getting him some counceling and possibly an anti-depressent. I believe once his frame of mind is healthier, so will yours be. Then take some time to read about all the many survivors on this board that had "tennis ball or golf ball sized" tumors in their necks. They had the same treatment that your husband is having and they are ALIVE and doing quite nicely. Show or read the posts to your husband, let him know that his cancer is treatable.
Best of luck to both of you.
Minnie

Sammie,

Good advice from Minnie. Also, your husband may not be the only one who needs an antidepressant. If you keep feeling this full of despair yourself, see a doctor and ask for one yourself. Also, I agree, read the posts from all the survisors hree who had big lymph tumors that disappeared with rad and chemo. And hang in there because chances are you will start to see this one shrinking with another few weeks of radiation.

Also pull out all the stops in terms of finding support for the two of you. It's hard for lots of people to ask for help but don't let your pride get in the way, help is what you need here and people who you don't even know well are around and willing to give it if you look. Look for cancer support groups and caregiver support groups in your town. If you belong to a church, be sure to let someone know what you are going through. You probably also have friends and co-workers wondering what they can do to help. Find stuff for them to do. In my case I had friends that came over and sat with me (mainly I was sleeping or in a pain-med haze watching TV) during my last weeks of treatment when my husband was desperate for a little time off. Do you have some friends who might be willing to do that? Other friends of mine came over and actually cleaned my house since I had a low WBC from the chemo and my husband appeared unable to use the vaccuum or the mop even under those circumstances. A woman I didn't even know from my church came over and weeded my garden that Spring.

Let other people be kind to you and be kind to yourself. You CAN get through this and you will be a stronger person at the end of it.

Nelie

Minnie, Thanks so much for the reply, I re-read my post in the the light of day, and pathetic as it seems.... it is all true, I agree with what you say about the shock of it coming back, last time there was no time really for it to sink in, we had the dx and within a short period of time he had his op, this time aroubd it has been appointment after apointment, ct scans, pet scans, biopsy, FNA (waste of space)Dr chemo, Dr. radiation, mask fittings etc etc. I do need to buck myself up.......I also go to work but I have put myself on short time, maybe I need to take a hiatus for a while after all what is money when your sanity is going out the window. I have spoken to the Dr. today and he is faxing through orders for new meds. I hope it helps him.

Nelie, I want to thank you too for your reply, when I read the line about feeling safe and then it coming back and being devastated describes me to a T, I have come to realize after reading the combined posts I am not Superwoman and cannot do it all, and getting help around the house is a good idea. As I explained my family are a waste of space, but my friends well, they are a different story, they have always been there for me, but I don't like to impose, and as you said "don't let your pride get in the way" I am a proud person and yes I think, well I know it has got in the way.

I would like to thank you both again for taking the time to reply, I feel better just knowing I am not alone, and there are things I can do to relieve the stress so it is less of a burden.

All the best
Sammie

Sammie,

On top of all that terrific advice above remember that he didn't have chemo rad the first time, which was very odd, but the radiation is the only proven killer of SCC with the chemo added as a turbo effect. A very large number of people are Dxed Stage IV having mets to the nodes and have experienced the same Tx he is undergoing with complete success.

Where is he being Tx now? When did his Tx begin?

Hi David,
My husbands Tx was in U of Miami in 2005, and they had told us that the nodes were clear, they took wide margins and they too were clear, also the "C" had wrapped itself round a nerve (I think it was a nerve) and they had to un-wrap it. The primary was on the base of the tongue. This time around he has been scoped twice and to quote the Dr's who did it, it is clean and healthy (but they still did a PET) This time around he being treated in Memorial Cancer Center, his insurance dropped him after 12 months of being clear (long story) but anyhoo, they are doing a fanatstic job, Dr. Chemo and Dr. Radiation are in contstant contact and work together with treating my husband, and whenever I have called they ALWAYS make time. They have also kept his 1st Doc in the loop, as his 1st Doc requested it (he and my husband got on very well). I know people reccomend a CCC but unfortunatly it was not to be... TY Insurance.

All the best
Sammie

Hi Sammie, Of coure you're not superwoman, but all caregivers feel responsible to be that at some point. I can completely relate to your feeling like you just can't do this again - it's normal. You will find a way. As for family - well those are the people who love and support us, the rest are relatives that you don't have to deal with at this time. If you have a good support network of friends turn to them. I'm sure they won't consider this imposing.

In addition to this forum support groups many be available or phone counseling from cancer care. They focus on either the patient or caregiver. There are moments when none of us want to do it no matter how together we are. It's an emotional roller coaster. The good news is that passes and you go on to other and hopefully better moments. It's situational.

Hydration and nutrtion are really key in going thru chemo radiation so that's a good, tangible place to focus. Also as Minnie said pain management has a lot to do with overall outlook, if what he's using isn't working let the nurses and doctors know so they can change it. The duragesic patch is useful and comes in varying doses but there are many many good drugs.

What's past is past. Sometimes microscopic cancer cells are hiding and they can't be detected until they grow to a certain level. It does sound like you are satisfied with this medical team and that's what's important now. Let us know how both of you are doing.

Regards JoAnne

Hey Sammie.

I would fight for the insurance company to reinstate you. I do not know the circumstances and all the legalities, but you know they are "dropping" you for a "reason". It will be very hard to get insurance with a pre-existing condition. You may be restrained by a time limit, so time is of the essence... Send me a PM or E-mail as you have b4. Petey

Sammie, Most of the caregivers I know have had to reach somewhere deep inside to pull out the extra strength needed to get through this. Where that is for you, only you know, but I'll bet you can find it. Please try to get enough sleep, Please try to eat right, please try to find a little time to just nourish yourself, these things are very important to help your family get through this. And the advice above is very good so I hope you can follow it. We are pulling for your family. Amy in the Ozarks

David, there are actually quite a few patients with negative nodes that do not have radiation.

Thanks for the encouragment everyone, Today has been a better day for me, Hubby had Chemo + Radiation today,he wanted to go by himself so I could catch up on a few things @ home... So it was a full day at the C Center for him, I had spoke to the Dr on the phone, but decided to run down there and make sure he got the meds he needed,good job I did as the horse size pills would never have gone down! They forgot to put liquid! I drove hubby home and then went shopping, I purchased every suitable drink I could find! came home, lined them up and told him to choose one! My husband looked at them, then looked @ me and so " Oh! So the b*t**h back?!!!!!" I just laughed.... I am far from being the caregiver I was or should be in my opinion, Understanding WHY I felt this way from the above posts was a big help, I guess I am not out of the woods yet, but having a map sure does help.
Will update later.
TC Everyone and thanks again.
Sammie

Minniea,

I missed the Clear Nodes, I guess my brain stopped after seeing neck dissection and tongue surgery thinking why would they do a ND without knowing cancer was present. I see that that was 2005 and I wonder if rad would be recommended today with the same Dx?

Sammie,

I am sure you won't be the caregiver you expect yourself to be but I AM sure you'll be everything he needs you to be and much more.