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My Caregiver

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Hi,

I came over to this board to get a sense of what caregivers deal with when a loved one is diagnosed. What I'm reading does not surprise me but it does make me sad. I've been diagnosed with Head and Neck Cancer Tx N2b, MO Stage IV. I've already had surgery (tonsillectomy and biopsies) but I've yet to begin treatment. I'm scheduled for more surgery to remove the tumor and try again to locate the primary site. I know from the Head and Neck forum it's going to be hell.

I met my partner in life just two short years ago and she is a blessing beyond anything I ever thought I be blessed with in life. She has enough hope and positive attitude for ten people. I'm afraid if things don't go well, this will destroy her. She's a strong woman but.....

How do those with this ugly disease deal with the ordeal they're putting their caregiver through? I hate to have her see me get so sick.  And then there's the prognosis, which statistically isn't great. Don't get me wrong, I want to be the exception as opposed to the rule but that's still in the back of my mind.

I asked her to join the site and she has but hasn't posted nor really spent any time here. Perhaps it's denial or that she doesn't want to face the reality of what's going on but I'm afraid this is going to hit her upside the head and she's not prepared. She feels a bit self conscience because of a language barrier. She Spanish and her English, while very good, is not where she would want it to be. I happen to be enamoured by her accent. In fact, she even "writes" with an accent and that's what I found so charming when we met and were exchanging emails. Believe me... it's very good to be a "Papi" :) What can I do to help her prepare for the roller coaster ride? How can I help her help herself throughout the process?

Any advice would be appreciated.

"T"

 

stubbysmom
Posts: 9
Joined: Dec 2012

Well, it is going to be a roller coaster ride for sure.  I haven't spent a ton of time over here either because honestly it kind of depresses me and I try to find other things to think about.  One thing I have found is that even though my hubby and I were close before, we are much closer in a different kind of way now.  That's the only good thing that has come out of it.  Live for now, don't dwell on the future.

KJones1969
Posts: 158
Joined: Mar 2012

I am the caregiver. I have information on my husband below. He said today we just take it day by day and that is exactly right. In my opinion just talking to each other and being open on how you are feeling and what you are dealing with seems to make it easier. Now my husband doesn't do a lot of talking but I know he is grieving just as I am. He has been sick for a year and just really showed emotion the other day with some crying. I think he is really realizing how sick he is. You sound like you are a strong person and trying to make it easier on her. I will keep you both in my prayers.

 

Karen

2/18/12-DX with Stage IV RCC that had Metastacized to his Lungs

3/15/12- Husband had left radical nephroectomy

5/3/12- Started Votrient

8/5/12- Scans showed a reduction in size of lung nodules

10/19/12-Scans showed reduction in lung nodules had doubled in size and he had new spots as well

10/27/12-Started on Afinitor (he had his worst side effects on this)

1/10/13-Hospitalized due to Malignant Pleural Effusion. Came off of Afinitor and 2 spots on his right lung had doubled in size. Had a pleurax catheter put in for drainage at home.

1/19/13-Started Inlyta (he goes back to the doctor this week for blood work but won't have scans for at least another month, the only side effect he has had is extremely tired. Let's hope it stays that way).

2/8/13-He had an appointment with the pulmonary doctor with hopes of taking his pleurax out, which didn’t happen due to drainage. There is also a spot on the top of his head that the doctor said is cancer.

 

Deborah J Cornwall's picture
Deborah J Cornwall
Posts: 32
Joined: Feb 2013

Good for you for thinking about your partner's well-being at the same time that you're fighting for your own. She would do well to reach out to others--to learn about what challenges might face her and to begin planning how she'll balance the various pressures on her time and energy, so she can stay strong for you. My interviews with 86 caregivers and conversations with dozens more suggest that she doesn't want to go through this alone. I don't mean that she's truly alone, because she's with you, but she's alone in her caregiving situation. By talking with a social worker, and reading (if her English is sufficient to let her do that) about how other caregivers describe their challenges, she'll be able to let out her emotions and get some validation that any emotions--feeling scared, overwhelmed, angry, frustrated, or helpless--are OK. Letting them out, and of course feeling free to talk with you about them, will make the experience more tolerable and give her greater strength.

You sound as though the two of you are made for each other, and you certainly desesrve many more years of love and companionship. In case that's not in the cards, her getting herself prepared for the unknown that's ahead is a good idea.

grandmafay's picture
grandmafay
Posts: 1621
Joined: Aug 2009

I don't know if you are still following this or not, but decided to add my 2 cents which with today's inflation isn't worth much. I was the primary caregiver for my husband for 6 years before he lost his battle to colon cancer. I don't think you can prepare for this job. We often took it not only one day at a time, but one minute at a time. It was a roller coaster ride, as mentioned in a previous post. Realize, though, that roller coaster rides have both ups and downs. We were really blessed with the 6 years since the literature at that time indicated that the average was 22 months. We made some wonderful memories. My husband insisted that he was living with cancer, not dying from it. And living we did. We spent time with friends and family, traveled a bit sometimes with granddaughters, saw our fourth granddaughter, saw our sons gain promotions, celebrated birthdays and holidays knowing that each one might be the last, and the list goes on. I'm not saying it was easy because it wasn't. Communication was the key. We talked about everything even the hard things. We laughed together and cried together. Losing him was a loss I will always grieve. Watching him struggle through several surgeries and chemo hurt me. Yet, I was honored and privileged to be his caregiver. He, too, worried about me. He told me often that my job was harder than his. I don't know that I agree, but it helped that he told me that. My only advice, for what it's worth, is hug each other often, say I love you multiple times every day, and make good memories. None of us knows how long we have here together. I've learned to try to make every day the best day I can. Life is to precious not to live it. Best of luck and take care, Fay

Peace_Hope_Love
Posts: 3
Joined: Aug 2013

I am grateful that you have stayed active on this site.  Your posts are lovingly positive and helpful.  The love of my life has a rare Stage IV NHL;  the prognosis is not good.  We decided to laugh our way through this, the day his friend & primary Dr. called with the news.  We have done a good job so far.  Again, thank you for taking the time to post on this site ... others experiences can be so helpful~

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