New Here...Scared and Tired.

Luckyme65

Hello everyone,

This is my first post.. Not all that happy about being here, but this is where I am...This is my story:My Husband of 20yrs Yesterday, Yes Happy Anniversary to me:) whom is 52 yrs old has stage IV, base of tongue cancer. Diagnosed 8/14. Has had 35 rounds of Rads, and 3 LOOOOng sessions of Chemo at Sloan..No surgery as his has crossed the dreaded midline...(anyone else out there with this diagnosis?) He has been done with treatment since 12/14 and is still having a hard time...Lost a ton of weight. No PEG, so down 60lbs.(Thank god he had some xtra to loose) He is now very frail, and tired, hardly eating, just protein shakes..Im so hoping this turns the corner soon..and starts to like food again.. We are such FOODIES and now not so much:/ So much anxiety over the next steps (PET scan on Monday) worried for him, tired of it all...Ive had to work this whole time, take care of him and maintain my strength so I can pay the bills.. Gosh this is hard...I feel like every day is ground hog day..Anyone out there feel like this?  How do I look for others with the same diagnosis my hubby has.. I would love to see some positive news for him/me...

Thanks CSN familyK~

Ladylacy

Hello

While my husband doesn't have the same type of cancer, his is laryngeal and then a second primary at the cervical of his esophagus and spread to lungs, you should try and post under the Head and Neck section where others with the same type of cancer your husband have post.

As a caregiver you must take care of yourself too.  It is stressful for us caregivers as in many cases we do it all so we need to take care of ourselves too.  Thankfully we are both retired and were 5 years ago when my husband was first diagnosed.  It is hard and there is no way around it.

Wishing you both peace and comfort -- Sharon

Luckyme65

Ladylacy said:

Hello

While my husband doesn't have the same type of cancer, his is laryngeal and then a second primary at the cervical of his esophagus and spread to lungs, you should try and post under the Head and Neck section where others with the same type of cancer your husband have post.

As a caregiver you must take care of yourself too.  It is stressful for us caregivers as in many cases we do it all so we need to take care of ourselves too.  Thankfully we are both retired and were 5 years ago when my husband was first diagnosed.  It is hard and there is no way around it.

Wishing you both peace and comfort -- Sharon

Thank you Sharon, I will give

Thank you Sharon, I will give that a go... K

 

grandmafay

Been There

Welcome to the boards that none of us wanted to be a part of.  i don't come here as often as I used to, so just read your post. I took care of my husband wth stage 4 colon cancer for 6 years before he lost his battle with cancer. Being his caregiver was one of the hardest things I have ever done. It is stressful and difficult. Somehow, we do it. And for the most part we feel privileged to do so. It is often frustrating and demanding. I agree that one of the first rules of caregiving is to take care of yourself. Find ways to relax if only for a few minutes at a time. Know that you are not alone. I wish you luck and peace. Fay

Noellesmom

here I am, lucky

Husband of 35 years was diagnosed at 52 with BOT and stage 4 hypopharyngeal cancer.  Inoperable.  This May we will be five years post diagnosis.

I know how tired you are, cooking is my way of showing love and I, too, worked full time while Jim went through 3 rounds of chemo and 37 radiation treatments.  Jim went from a healthy 170 lbs to 119 lbs in spite of eating very well at about 3500 calories per day.

If you have questions I will be happy to try to help.

Banditsdream

you are not alone

Hello

Your story is similar to mine and I can relate to the scared and tired.  My husband had throat cancer 15 years ago.  I was there with him through the surgery, radiation, chemo, losing his teeth, and years of recovery/check ups.  After 5 years or so he was considered cancer free.  The lovely radiologist did tell him the amount of radiation she gave him was so strong he would likely get cancer again within 20 years.  In November 2014 he began to lose a lot of weight.  Happy Thanksgiving! A new primary cancer in the same area, on the base of his tongue, spread to lymph nodes in the neck and by his heart. His epiglottis is no longer there. he chokes with every swallow. He has chosen not to do any traditional treatment. No more chemo, no radiation, no surgery.  It is so hard to watch and scary for me as I just graduated from school with my RN. My training is screaming at me to help him by seeking treatment. The wife in me is trying to be supportive. I haven't slept all night in months as I wake up listening to him breathe/snore.

I did have a thought last night, however which might be helpful to you.  I keep wanting him to take the action I would do if it were me.  I am anticipating what might happen- aspiration pneumonia or choking.  I keep focusing on the future and what it is going to look like especially if he continues to do nothing.  I imagine the tumor will close off his airway and it scares the hell out of me.  Then around 2:30AM as I had a thought.  I am thinking about what his death is going to look like- He is focusing on what his life looks like. 

I have it all wrong!

Today I am going to stop thinking bad thoughts about the future.  It is what it is.  I am not in charge. I am not the one who is suffering the disease. I need to honor my husband and his wishes to live his life on his terms.  Focus on now. It is all you have.  Take care of yourself.  Go get a massage. You are in an amazing position to help your husband focus on life and happiness.

M