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High Tide, Low Tide, Slack Tide

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

Friday started out bad. He was still throwing up, still in a lot of pain, so I called hospice and they had the doctor stop by. The doc changed his meds around (stronger pain and anti-nausea), and the home health aide came Friday. He started cleaning with out me asking - I'm in love :)

Saturday ended up ok. His friends came to visit after all. He started to nod out a lot and was sleep "sitting" like sleep walking sitting down. So I called the nurse on call to check because this is a new thing. Because of his meds, he will nod out, so i just gotta keep an eye on him.

Today, Sunday, started unbelievable. I wake up and he's down stairs. Said he slept in the recliner all night, felt great, give him money he'll go to the store. We live on top of a steep hill, so I'm like sure ok, let me get dressed. So we went together to the deli and came back up. After that he's been out for much of the day. I'm starting to see that he's better in the mornings. Maybe tomorrow we can tackle a shower ha ha :)

Skipper - Pat is better at home. He's still able to get around, but when the time comes I'll ask for the help I can get. I'm his everything and his only family. I can't say I'll be able to do everything, but i would rather take care of him than have someone else do it. Since he had his voice removed and his voice wasn't strong for months before, he hasn't literally yelled at me for over a year. He can still yell at me with an EL its all in the facial expression. We're having good time for the most part - that's what I wanted for him in the first place.

I used to be a HHA for a quadrapalegic so some stuff I know how to do. I'm so protective it's not funny. He gets lots of kisses from me and always a good night kiss when I go to bed.

People he's lost track of are coming out of the woodwork. He knows so many people that he's lost touch of I might have to put up a billboard in Times Square! I don't mind making the phone calls, Barbara, depending on where the person lives almost as good as a visit. Hate being translator sometimes, hard on the person on the other end.

I'm taking things day by day. And finding the bright spots in each one.

cher8871
Posts: 64
Joined: May 2010

bravo to you! you are a rock....don't we have to be though?! i'm glad pat is able to have some "good" time, even if it's only in the mornings...soak up all you can!

sending love, hugs and prayers for good stuff!
cheri

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

smdh = shaking my d@@@ head.

You would think I would realize that for every good day there is a day from the depths of hell right after it. He's been in one of those moods all day where everything just happens to be my fault.

I woke up in pain? your fault

I almost blacked out? your fault

And I am not allowed at all to be upset over this and give as good as I get because "I have enough on my plate without you giving me an attitude.

What a wonderful day. At least some of the final paperwork got dealt with today.

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

And that is why I love you!!! You amaze me everyday April. I would say I got your back, but really I am hiding behind you. You show me everyday a beautiful person, who cares.
Your friend
Debbie Cake Queen
Jennie

Noellesmom
Posts: 1270
Joined: Aug 2010

Just lots of hugs.

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

I can't even eat. I have so much still to do. Thanks so much for the positivity Jennie. It helps a lot. I'm hoping tomorrow will be a better day.

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

Following you on this journey has been an inspiration. Your honesty is a breath of fresh air. I hope tomorrow is a better day for both of us. My mom in law and I are staying the nite in ICU. Its not looking good right now. Stay safe in tomorrows yucky weather.
Penny

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

that lying is bad. As an adult that morphs into not sugar coating anything. I warn people of that when they ask about Pat and it's the first time I talk to them. There is zero point to doing the 'everything's fine" routine then taking a turn for the worse that you have to tell everyone about a week later.

That and life still keeps plugging along whether I want it to or not.

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Somehow the road I turned down seam so dark and scary, I felt alone. There is no gps to guild me.I turn and their you April and Penny were . You both have open my eyes to so much , the good the bad and the not so good and so on. You two amaze me .. I am sure The words are in my brain to say just how much you all mean to me.
Some how you all are like a beam of light that make it seam a little easier to go down this road.
I love you like sisters ... One day I hope you buy you all Debbie Cakes as we set around the table.

neverquit
Posts: 221
Joined: Oct 2010

Hi April, I, like many here, have been following your and Pat's plight, along with Penny and Mike, and many others. I was following along silently, living my husband's cancer nightmare; reading but never posting until just before Christmas. For what it's worth, it's because of the candor and honesty that is shown here that I realize Mike and I are not alone in this horrific battle and I realize it is OK to post here. Thanks for sharing and I hope you have all better days ahead. By the way, I have a great support system in my family and friends, but none have had to walk down this same path. Thanks.

debbieg5's picture
debbieg5
Posts: 168
Joined: Nov 2010

It seems hopeless sometimes doesn't it April? I mean, we are working our butts off to take care of them and we are doing it because we love them. Yet, we are still human. We still get offended when the one we love treats us with impatience or blames things on us. Our natural reaction is to get back at them. Ken and I did this dance for months. Most of the time, I tried to act tough and practical. I thought if I didn't give in to his whining it would make him step up to the plate and fight a little harder. But I don't think I realized how little fight he had. Now that it's over, I just wish that I told him "I love you" more times and ignored his impatience with me. I think I was in denial that he would really go.
It's tough....but try to take the high road.
Debbie

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

it's soooooo hard for my brain and my heart to let things be. I'm still in "you're going to be fine" mode and it's hard for me to give up my position when we argue. everything happened so fast I haven't had the time to mentally and emotionally adjust that this is the last bit of time I have with him. I spend more time with him now and that means no 'puter (drives him nuts). I do a lot of little things, but it's like it's never enough.

skipper85's picture
skipper85
Posts: 231
Joined: Sep 2010

Hi April

You sound like you're doing okay. My husband was to a point where I couldn't take care of him by myself. He needed to go to the hospice center. We were together anyway because I stayed there most of the day and slept there most nights. I just can't believe he's gone. My husband pushed himself to get through Christmas. He made it and it was wonderful. I had no idea that he was so bad off that he'd be gone two weeks later.

Some of my husband's last days were his best. I can see that might be the same with you and your husband. When you know your days are numbered everything is more precious. Every moment is to be cherished. Life can still be beautiful in the time left.

((HUGS & LOVE))

Skipper

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

the way hospice works, at least the way Staten Island University Hospice works, is everything goes through them. And i mean everything - meds (which get delivered by the way (yay!!)), any equipment he needs (you name it they can get it), respiratory stuff (he has a compressor for humidified air and a suction machine for mucus plugs), and even off the wall stuff. I called today asking about a pair of tweezers that comes in a suture kit. They put in an order for me. How cool is that?

Anyhow, the compressor he had was from a company hospice doesn't use. So the company they use dropped it and the suction machine off and the other comapny I called and they came and picked it up. When the new stuff came, I didn't set it up right away. I asked where he wanted it, he said upstairs. Keep in mind he hasn't slept in the same bed with me in almost a week. i set it up downstairs today and showed the HHA how it works. He's using now and didn't say a word when I set it up in easy reach of him in the recliner.

ick.

Asked the nurse abt something today too. Right close to his stoma and right below the incision line it's getting red, like grape juice old bruise red. Nurse told me it's from the tumor growing. Because I remembered what Debbie went through, I asked about it. Nurse said it is a possibility, keep dark towels handy.

Nice. Honey, I know you love this couch. Please don't get it messy! Even though I can't stand the darn thing - so uncomfortable but the ends recline. Go figure.

He's been sick again today. I got him to sign more stuff though so that's good. His breathing is slower and deeper. And he's doubling up on his pain meds. If it keeps up another day where he's doubling, I'll end up calling and asking for something stronger. I don't want him knocked out, but I want him to be as ok as possible.

Wanted to wash his hair today. I even got the no-rinse shampoo so he doesn't have to move. Still insisting on doing it normally - in the sink with regular shampoo. Maybe I can get it done tomorrow.

So to answer the question. it's better and worse. Cheers.

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hello April
I have been following you and your husband's story. You are both amazing! I look forward to reading your posts. Some are sad, some are glad, most put a smile on my face. I was a caregiver for my dad. He passed in March 2010 from esophageal cancer. I have been where you are. The dreaded pain meds. I hated them. Dad was on morphine. Knocked him out, made him hallucinate, but....kept him out of pain. The price we have to pay. You are doing a most excellent job for your husband. He knows it, he really does, he just does not know how to really express his feelings. Most men do not. I am thinking of you both, praying God grants you the strength you will need to continue with this journey. Keep us up to date. Hugs to you both!
Tina in Va

skipper85's picture
skipper85
Posts: 231
Joined: Sep 2010

April:

Hospice usually only gives enough meds to make the patient comfortable. They only knock them out if it's in the patient's best interest or the pain is too intense. Is he on morphine yet? My husband was on morphine for several days and was still coherent. Eventually though he had to have something for restlessness and anxiety, then higher doses of morphine - then higher doses of the other meds. That's when he was out for the count.

I'm glad you can still communicate with him. You are a very strong woman under a lot of stress yet you find time to help people (including me) on this board. I have so much respect for you.

Praying for you and your husband daily now.

(((HUGS & LOVE)))

Skipper

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

He's refusing morphine for the moment. Because of his violently delusional reaction when he came off of IV morphine, I'm letting it slide for now. It makes his loopy and off kilter, so I understand. He has some here, but I only use it when the nurses tell me to (so I have someone to blame! ha ha) He's taking oxycodone for now and it works for the most part. He's never been one to take pills, so he doesn't need much to kill any pain he has. What he does take knocks him out, but it's for the best I guess.

Today has been a very weird day. Started out bad, but looks to end up ok. He's accepting a PEG feed (by his choice) a little bit at a time, and made it to the recliner downstairs.

I know I'm baling out the Titanic with a 5 gallon bucket, but the band is playing some beautiful music.

debbieg5's picture
debbieg5
Posts: 168
Joined: Nov 2010

hey April...haven't been here in a few days and thought I'd check in. We had Ken's funeral today and I am in a zombie state right now but don't feel like getting in bed. somehow, I know when I get in my quiet, dark bedroom, it is all gonna come pouring out.

Anyway, is Pat taking anything by mouth now? If he does, check to see if anything comes leaking out. That strange looking area at the edge of his stoma might be a fistula forming. And it could be the cancer growing right there also.

Not to be crude, but has started having any foul odor coming from the stoma area? Ken's got so bad that it was hard to be in the same room with him. Riding back and forth to doctor appts was very difficult also. He would have to keep his window cracked some even though it was freezing outside so that I wouldn't get sick from the smell. The ENT never really gave me an explanation for the smell.

Hang in there and be prepared for anything. I'm still going to give you a call as soon as I feel that I can talk coherently again.
Debbie

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

other than the usual smells, there isn't anything I can't figure out or have an explination for. and other than drool or vomit, nothing coming out of places they shouldn't. His surgery site healed well, so I'm not too concerned about fistulas. His high metabolism and fast healing body is working against him now.

debbieg5's picture
debbieg5
Posts: 168
Joined: Nov 2010

so why would fast healing work against him?

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

I think it's working against him now because I think it helped the tumor more than it did help him.

skipper85's picture
skipper85
Posts: 231
Joined: Sep 2010

My husband was the same way. He always healed faster than anybody I know. He just couldn't beat the cancer. I think his fast healing abilities allowed the cancer cells to reproduce and spread faster.

Skipper

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