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alone, lonely, and feeling very guilty about it

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

The holidays usually end up making me feel lonely as family is far away, but this year it's a bit worse. There is so much going on on top of Pat having cancer and having complications. Then I see how others can do all sorts of research, be these awesome advocates, have the cojones to tell the primary doctor that they aren't cutting the mustard and another doctor is needed at this point.

I'm feeling pretty inadequate.

Pat comes downstairs and tells me he has so much pressure and pain he doesn't sleep. His current doctor is pushing radiation, but won't think to give him any pain meds besides Tylenol 3. The guy isn't giving me enough information to help Pat make an informed decision about what he needs to do. This guy won't even consider making things easier for Pat and have him radiated closer to home.

Feeling alone is something I fight every day as there isn't anyone to help out with the simplest things. Everything that needs done I do: phone calls, advocating, housework, financial, lawyers, all of it.

I alternate between deep despair, severe anxiety, and trying to feel like there is nothing wrong so I can act normal.

I refuse to give in and cry, because there has to be something I can do.

I think I will take up boxing this year. Then maybe for just a minute I can feel powerful and strong. I sure don't feel that way now.

kayemsmom's picture
kayemsmom
Posts: 2
Joined: Dec 2010

My fiance was recently diagnosed with stage 4 malignant melanoma, we havent even begun treatment yet ( jan 3rd), and already we are in shambles. were fighting often, i feel so many emotions.. ( angry, mad, frustrated, hurt, u name it ) and hes just distant and angry all the time. Just do ot know how to cope with this.. Crying,, is what i do often these days.. i am so overwhelmed as u are, i have to do everything and take care of ( 4 kids ) right now. uhhhh some moments i just want to run away !

ketziah35
Posts: 1141
Joined: Jun 2010

I told a friend of mine that next Christmas I am going to Afghanistan. I am sure that it will be much calmer than dealing with what we have to deal with. I think that sums it up.

kayemsmom's picture
kayemsmom
Posts: 2
Joined: Dec 2010

know how to deal... u know we werent given a manual on how tocope, deal or handle any of theses type of situations. and frankly, its freakin hard!!

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

Girl, I totally know where you're coming from. You have got to get some time for yourself or there won't be anything left. Is there a friend or some one who can sit with Pat while you go do something unrelated to cancer and only about you?

I understand the guilt, but it's really not valid. I know when I spread myself too thin doing everything for Mike I get less and less compassionate with him, resentful, and angry. THEN I feel guilty for feeling that way. My whole family is in Florida for Christmas this year and I'm stuck in downtown Richmond with no vehicle and no money, while Mike is calling me from the hospital begging me to come see him. Cab ride each way is $17.00 and the VA transportation company is not running on the weekends. Today I found a ride up there, but I'll have to spend the night on the cot because I won't be able to get back.

There's no solution to either of our situations, I know you're not a quitter and neither am I. Indulge in a good, snotty crying spell, then dust yourself off and try to escape for a minute, then go back at it. I'll be keeping you in my thoughts and prayers.
Penny

3Mana
Posts: 829
Joined: Aug 2010

Penny,
Sounds like you're a little frustrated, huh? I don't blame you but you have to be strong. I hope 2011 brings everything you're hoping for. Please just be happy that you still have Mike. If I was you, I'd bring a sleeping bag or air bed & sleep right next to his bed. You are so lucky to have him, just remember that. As it gets closer to Christmas, I can feel the tears starting to build up cause Tom isn't here. I never in my wildest dreams thought that last Christmas would be the last one I would spend with him. Just thinking of getting up on Christmas morning alone, makes me cry. I will be spending the afternoon with at my son & daughter-in-laws house with the rest of the family. It's going to be hard for all of us, but we'll have to get through it and remember the happy times.
So please enjoy when your phone rings and it's Mike, cause I'll never hear Tom's voice again.
Carole

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

You're absolutely right, Carole. I'm very blessed to have Mike still with me. I know you're really going thru a lot this first Christmas without Tom. Tomorrow is the one year anniversary of losing my mom to breast cancer. In a way I'm thankful for the upheaval in our circumstances, because its helped me not to focus on missing her so badly. I still think about calling her to talk about what's been going on, then I remember I can't. I can't imagine the grief of losing a spouse. I'm wallowing in a little pity-party these days, and I shouldn't, really.
Penny

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

I never will hear Pat's voice again either. Fact of being a lary. It sucks.

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

I know how you feel April. By the time we knew that Ken would have the laryngectomy, he had already had a trach and his voice was altered. I got a small digital recorder and asked him to record some things, particulary for our kids. I wanted him to do separate recordings of things like "Happy Birthday", "Merry Christmas" or "I love you" so that we could go just to that recording and play it whenever we needed to hear it. but instead he did one, long rambling talking to each child and myself.

Sometimes the silence is deafening. He has pulled into his shell so much. I think a lot of it is the communication problem. He has not picked up the EL device in over a month and thinks that I am an instant expert at reading lips. It gets very frustrating.

Has Pat learned to usa an EL?
Debbie

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

Pat is really good with his EL. He uses a Griffin which vibrates ALOT. I understand with the lip reading. The only time I'm usually off is when Pat gives me a new word he hasn't "said" before. Then I tell him try again it's a new word I don't understand.

He doesn't use his EL when his neck hurts. And when he's in the hospital (like he is now) he looks at me to give the nurses and docs all the info they need.

The lip reading is frustrating, but Pat is very communacative (is that a word?) so we work it out.

If your hubby is anything like mine, start calling him a drama queen and a big bratty girl. That will get him upset enough to start using the EL more. The silence sucks, but I've learned he will tell me what he wants to tell me when he wants to tell me. Stubborn Irish man.

Worse case scenario - call him a b****. Works for me!

April

luv2cut1's picture
luv2cut1
Posts: 285
Joined: Oct 2010

I so wish there was something I could do to help. You are going through so much right now. I felt the same way during active caregiving (both the first time and through recurrence ). I still feel anxious and alone because I cannot get over the feeling of waiting for the other shoe to drop. I feel guilty about that because you and others are going through so much more right now.

I just want to say that you are one of the ones I have been following and thinking what an awesome caregiver you are. Everything is so overwhelming and we all struggle through doing the best we can. It is hard getting the information we feel we need, and when the drs are of no help it makes it nearly impossible. One thing that really p**&*s me off about your situation is the pain meds thing. There is no excuse in my opinion (which really doesn't mean much ) for your hubby to be on that much pain. There are such good meds out there. We were lucky because both times during treatment Pats doctors we're very concerned for his comfort and ability to sleep.

I know it doesn't help much but please let the people on these boards be a support to you. Also boxing sounds like a great idea!

Thinking of you and hubby always.

Myka

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

April, In as much as we are so differebt we both are going thru the same things. The harder I try the harder it becomes. I can not please everyone . I try to act normal but I am no longer sure what that is. Maybe I really never knew.
I refuse to cry , the water you see running down my face is from the shower I took. Anxiety I feel is now becomming my best friend it seams to stay around longer than anything else.
I know you are a strong willed person, but I also know how lonely that can make you feel. I just try to remember all that is good , some days very very hard to do.

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

Tears are strength, not weakness. Im not ashamed of crying for either my own challenges and difficulties or those of other human beings and their lives. Crying allows my heart to heal and to replenish the very hope I hunger for so I may continue to link today's reality with tomorrow's locket of promises. Some of life's most precious and quietest moments come at those times when the heaviest demands are unfairly placed upon our heart's shoulders. Our eyes are vital gateways for the very fears, saddness, frustration, joys and inspiration that our hearts spirit uses to share with the world around us. I couldnt imagine keeping my feelings bottled up or my eyes shut closed. Its not only okay to cry but an invaluable quality to have

3Mana
Posts: 829
Joined: Aug 2010

Wow, if tears are strength, I must be so strong cause I can't tell you how many tears have rolled down my face the past few days. This morning I went to the cemetary and stood by Tom's crypt and sobbed. Still can't believe he's not with us anymore. Last Christmas, all he had was a backache can you believe that?? Maybe tomorrow will be better, and I'll have no more tears to shed, huh? Hope you have a Merry Christmas and have a good 2011! "Carole"

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

I was once again told how strong I am. I must be doing an Oscar worthy job because I sure don't feel strong!

Jennie - I told you before: I NEVER shut off my cell. Use it if you need it or even if you don't. At least I can tell you a story and make you laugh.

Anyone else who needs a laugh message me. It's strange but helping others gives me strength. I think because there is so little I can do for Pat right now I feel useless and everything else. When I'm doing something life is so much easier. Progress!!

Miss Carole - I try so hard not to take anything for granted. I don't know when God is going to call my monkey man home. Thinking about you . . . .

Miss Penny - Your in my thoughts also. I'm here if you need.

Thanks everyone - April

mukamom's picture
mukamom
Posts: 357
Joined: Oct 2010

think I am strong also...I'm a practical person and I like to fix things..I can't fix this. It causes a great amount of stress to see Robert this way and there is nothing i can do to make it all go away and have the man back that i married. So off i go, coordinating his care, diet, appts and when a new deveopment pops up, I snap. Become #itchy, defensive, resentful...not a pretty site. Robert doesn't deserve that, but it happens. Sometimes I don't even want to come home. I have never been a pushy person, but I am becoming one when it concerns Roberts care and p*ssed off more than one health care professional. Too bad NOT
Guess that is my way of venting my frustrations.

Sorry to have rambled..not a very cohesive post, I must say.

Your post hit home April. You and Pat are in my thoughts.
Angela

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

Apirl,
I have loved you like my own since we first chatted. You are always in my thoughts, You have picked me up and almosted carried me from some alful thoughts.
You shpow suck compassion for others, (like me) That is your strengh. You never stop amazing me everyday.I believe you know what it is to be a true friend.
Alwaysyour Friend
Jennie

nancyann3
Posts: 196
Joined: Mar 2010

All of your posts hit home. How we cant fix our loved ones sickness, the fear of whats to come, and the battle with medical staff on care of your loved one.. I was once again put in my place today at the clinic, and showed how my opinion of care just doesn't matter. In so many words I was told how treatment has cost to much and I wasn't getting anything. I was also told in so many words that we shouldn't have gotten some things in the past and they wont do it again. I was so humiliated I had to walk out. I know this doesnt make much sense, but just had to say it.

Thanks for listening
Nancy

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

Some how nothing you said made sense but...... I understood every word, So how can that be. Because you spoke honest feelings , sometimes it feels like our opinions do not count, that , what we think has been or will be belittled by someone.
NEVER let them make you feel that way, If they do tell them put a sock in it. No one has a right to humiliate you. The Doctors we see Know one thing for sure about me I fight for my husband and they know I love him. They treat me with respect and I do them, I take notes with me and ask questions as to why they can or can't do this.
I refuse to let anyone talk down to me ! Remember if they are doctors or nurses they work for you .

Jennie

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

seriuosly - I'm having to get this way myself.

IF this happens again (IF) look at them with a big smile and start off by saying, "Excuse you? I don't think you are listening to me. Let me try again." If you get nowhere, ask if there is someone above them you can speak to that will explain it to you.

And above all, telling them to go blank themselves just feels good.

Having one of those days again - oy.

1Teresa
Posts: 68
Joined: Dec 2010

I really need to change my mom's primary....... he wont even return my phone calls or give me her medical records and there is some stuff he has done and hasnt done that others have told me is "Intern 101" where he is blowing it. I have my mom's power of attorney and advanced health care directive which give me ALL her medical and legal power even if she is able to make the decisions herself. My mom always liked this primary because he goes to her church and he could tell a good joke, but I got a list of medical type reasons for not liking him. My mom hasnt agreed yet to change and right now we are taking a little R&R until after Cmas before making hard decisions. The question here really boils down to how hard my mom wants to fight though. She does not want to fight it for 6 years like Elizabeth Edwards did since she considers it futile. Right now it is one day at a time.

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

We all know there are a zillion kinds out there so no excuse not to have something. Ask about Fentanyl patches. They come in many different strengths and you just have to experiment to find the level that takes care of Pat's pain. They stay on for several days and release a steady flow of the medication so you don't have the rollercoaster ride of meds that you have to take every few hours.

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

right now, the ER is giving him dilotid and morphine.

This scares me.

Isn't that the stuff they give you at the end?

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

no, those are not necessarily end of the line drugs. Ken was given Dilaudid (hydromorphone)earlier in the treatment but it didn't agree with him well. Neither did the Oxycontin or oxycodone. Actually, I think it was just him. He was just really bad about taking his meds. That's one of the reasons they put him on the patch...then the stuff is there all the time.

Is Pat going to have to stay in the hospital for awhile? that would suck for Christmas.
Hope you are at least able to be at your own home in a peaceful environment.
Debbie

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

Just read your post. Praying for you and Pat. Dilauded and morphine are standard "big pain" drugs for cancer patients. Not necessiarily end of life medicine.

hope0310's picture
hope0310
Posts: 324
Joined: May 2010

In my T&P April.......

1Teresa
Posts: 68
Joined: Dec 2010

they started my mom off on dioladad (hydromorophone). She had 2 gram pills and could take one or two every 4 hours as needed. About a week later I had to take her back to the ER and they put her on the fentynal patch. She has been using that about a week now and really really likes it. She gets to use the hydromorophone in combination if needed but for 3 days now she hasnt needed the extra meds. The patch has been handling her pain alone and moving into a different position.

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

have to see what the docs think. also will have to set up skilled nursing care for him. he is no longer able to be left by himself for any length of time.

:(

1Teresa
Posts: 68
Joined: Dec 2010

my mom hasnt been able to be left alone since just before Thanksgiving (before we had her dx of the cancer being back, all we knew is she was in pain and going downhill fast). Now, with the patch, she is moving around again a few times a day and getting dressed and only uses diapers for bedtime. For awhile she could only have button up shirts (because it hurt too bad to lift her arms, even briefly) but for the last 2 days she can do pullovers again and really, it is because of the fentynal patch. She has an Occupational Therapist, Physical Therapist and Home Nurse come in once a week on different days and now she will be getting someone to help her take showers too. Medicare pays for all these people and hospice has also been mentioned, but for right now hospice is something we put on the back burner to be decided after Cmas.

Maybe your husband can have the nurse and other professionals come in and help too. Are you working a job while taking care of him?

neverquit
Posts: 221
Joined: Oct 2010

1Teresa, can you tell me what that patch is for? My husband has stage IV gastric cancer with mets to the bones that he has been battling since 6/21/10 (no symptoms and then BAM). He has really gotten bad the last two weeks with nausea, which keeps him from eating (already down to 136 from 186 so he can't afford not to eat). Is the patch for pain or nausea or both? Thanks.

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

It is controlled-release and therefore more effective with less total drug consumption. It is very handy for those that can not take pills (or won't) but it can also cause or increase nausea (which is what it did for my husband).

Since we just tried almost about every nausea drug known to man, I can probably give some advice. What is your husband currently taking for nausea, pain, etc.? (I'm asking for the whole list because some can interact. . . .besides, I'm both really interested in drugs and really nosey.)

1Teresa
Posts: 68
Joined: Dec 2010

is a suppository that is used for nasuea that they prescribed. She was prescribed these when she was on the hydromorophone alone (Dec 1 when she was dx) but she still hasnt needed it. DrMary is 100% correct about everything. Mom has been getting naseaus on her toothpaste lately and I am going to try baking soda instead tomorrow.

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

Yes, promozetholine suppositories (the generic for phenargan) are a life-saver when the nausea is too bad to keep down pills. Doug was in the hospital for 4 days to rehydrate and get IV drugs when he was so bad he couldn't even keep water down (this was his doctor's plan) - due to hospital protocol, he almost died (another, long story). Anyway, his doctor stepped in and over-rode the hospital and released Doug home, saying he thought we'd be better off there. The phenargan suppositories got us through the first night home and Doug was able to keep water down. We did some outpatient IV at another hospital and eventually found the right combination of drugs to stop the nausea (in his case, Reglan and Decadron, but that is not the best for everyone).

One hint - use disposable rubber gloves when inserting the suppositories. They often want to come back out. I thought THAT was the worst thing I'd ever done. . . then a week later, we had to deal with serious impaction. If he EVER doubted I love him before that, he knows now.

neverquit
Posts: 221
Joined: Oct 2010

My husband is not currently taking anything for pain; he has more stomach discomfort (pressure) than actual pain so far. He is currently taking the following:
Morning:
Miralax
1 Dronabinol 5mg
1 Injection Arixtra 2.5 mg/.5 ml
1 Decadron 4mg
1 B1 100 mg
1 Prilosec 20 mg

Weekly 1 D3 50,000 unit

Noon:
1 Zofran 8 mg as needed (<3 a day)
1 B1 100 mg

Dinner:
1 Dronabinol 5mg
1 Prilosec 20 mg
1 B1 100 mg
1 Decadron 4mg

1 Pepcid AC as needed

Bedtime:
2 Senekot
1 Zyprexa 5mg

He also goes from diarrhea for two days (due to his new chemo) to 5 to 7 days of constipation.
Any information you can give me would be greatly appreciated.

Just an FYI, I have been reading the discussion board postings for a while. Last night after midnight mass, I went to a local shrine (have been a few miracles there) and prayed for your husbands as well as for mine. It was pretty cold at 1:30 AM, but tis the season for miracles and I will leave no stone unturned (medically, spiritually and nutrition wise). Take care all and I hope you all have a peaceful Christmas.

1Teresa
Posts: 68
Joined: Dec 2010

for constipation try prune juice. With my mom's meds they make her constipated and I am starting to use over the counter vegetable based stool softener plus a laxative (I had permission from her surgeon who said her primary doc should have prescribed these)

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

I had looked for it and missed it anyway. I appreciate the prayers - we went to our service last night (our first in a long time) and your husband was in our thoughts as well.

You've got a pretty good drug plan there - however, Zofran is really more of a preventive drug than an as-needed drug; it is made even more useful when combined with the Decadron. We had Doug on it 3x day regardless (every eight hours) and I made sure the morning dose was at the same time as his morning Decadron (it seemed to be the best help for morning nausea and the radiation nausea). We actually used an alarm and did the Zofran/Decadron at 5 am - he'd then nap for an hour or so and wake up hungry. You might consider trying to make sure all of your doses are scheduled exactly - if they are 2x a day (like the decadron) make sure they are every 12 hours, etc.

Is the Zyprexa to help him sleep? I'm not sure that would be my first choice, but there may be other reasons for picking that over others.

In addition to Zofran every 8 hours on schedule, I'd ask for a better as-needed antinausea drug, such as compazine or ativan (neither of those should be taken within 4 hours of the zyprexa, but you can work that out schedule-wise) or at least phenargan, as a few of us have mentioned. (BTW, it was phenargan that might have saved my husband's life when he had the allergic reaction to the tube feeding in the hospital - he got me on the phone and then handed it to the nurse, who was resisting doing anything until the doctor showed up - all this time Doug could hardly breathe - fortunately, he had phenargan listed as an as-needed injection and I told her to give it to him right away as it is also a good antihistamine and is used for severe allergic reactions. . .it helped right away with the reaction as well as with the nausea.)

The dronabinol, zyprexa and compazine (if you get it) are all likely to cause constipation. It sounds like you are getting an idea of his pattern, so try to anticipate it. On the second day of "the runs" go up to miralax 2x a day and consider adding colace as a nightly pill. If no poop shows up after 2 more days, try a glycerin suppository. Then the old enema. I hope you don't get to the manual dis-impaction stage (they prefer to do that in the hospital - I had some experience in the matter, so we did it at home).

It is very likely that his constipation is also due to dehydration. Have you talked about doing daily or every-other-day IV hydration as an out-patient? This was a real life-saver for us, as it meant we could concentrate on getting drugs and food in by mouth and not worry so much about pushing water.

I see he is taking pills for acid reflux - taking a sip of water every 5 minutes helps both the reflux and the dehydration, and is usually tolerated even by a very nauseated stomach. Pedialyte or Gatorade, if he likes either, is even better, as you are replacing electrolytes lost due to vomiting and the runs. Baby sips, like baby steps, are the key here. Yes, it's tedious, but Doug viewed it as "his job" and kept it up.

"No stone unturned" - I had that attitude as well and I think having the doctors see how determined I was helped, as they knew they could ask us to try anything. Donabinol did not work for us, but if they had recommended directly smoking pot, my non-smoking husband would have found himself with his wife sitting on his chest, blowing second-hand weed in. (This turned out not to be necessary, and they also did not think it would help anyway - good thing, as I do not really hang with too many people who would even know where to buy the stuff.)

In general, it sounds like you are doing very well for him - sometimes it is a matter of wearing down the nausea with constant care. Make sure it doesn't wear you and him down first - Doug and I took turns being "the strong one" - just when I was about to give up, he'd say, "I'm starting to feel a bit better - I think this is going to work" and when he was sick of it all, I'd tell him that I had it all figured out (I didn't) and he should see improvement in about 8 hours or so. Eventually he did and then got to the point where all he did was get better. I did really feel like a miracle at that point.

I hope you have your miracle soon.

neverquit
Posts: 221
Joined: Oct 2010

I really appreciate you getting back to me with the suggestions and info. you posted. You have given me some new hope and I already started some of the suggestions. I began Mike on the Zofran with the Decadron tonight and told him we would be doing this on a regularly scheduled basis rather than just using the Zofran occasionally. I also started getting him to sip small sips of water and organic juices on a more frequent basis.
I was really worried these last two days as he was able to eat or drink almost nothing due to the nausea and the violent diaphragm spasms/hiccups he was getting any time he moved, ate or drank. These "hiccups" happened once before to him about two rounds into his first chemo regimine and they said they had never seen or heard of this before (has anyone reading the postings ever had these)? They seemed to be not as violent tonight, so he was able to get down a half of sandwich (lot of organic chicken) and 8 oz. of organic juice. This was in addition to him taking more frequent small sips of water/juice. I also told him that we would be talking to his Oncologist about trying something to control the nausea on an as needed basis.
The Zyprexa was prescribed based on a study of stage IV stomach cancer patients on the same chemo regimens Mike has been on so far to: 1) prevent long term nausea, 2) give a better night's sleep as he was waking up every hour and 3) to a small degree to take the edge off (more for 1 and 2 and to a much lesser degree 3).
As far as the hydration goes, he normally gets a bag of hydration each week based on his blood test results and how he feels. He refuses to go to the infusion center this week as they gave him an extra week off to work in the First Aid room at Ski Patrol (we've done this the last 16 years as volunteers as a way to give back to a sport that we both enjoy). He does not want to leave the mountains this week as he is worried that this may be the last time he sees his Ski Patrol family (and it really is like an extended family).
I am hoping that what you have shared with me can get us through this week so that Mike can do what he loves to do at the mountain. This would be a huge lift to his spirits as well as keep him in the fight mentally.
I also like the part where you would tell Doug you had it figured out and that he would see an improvement in 8 hours. You can be sure that I will be trying that one in the future as necessary. Thanks again and I am very happy that you did get your miracle. I do hope that everyone here also gets theirs.

karenbeth's picture
karenbeth
Posts: 194
Joined: Sep 2010

My boyfriend who has small cell lung cancer had violent hiccups/spasms when he was getting radiation and was on a hefty dose of decadron. It seemed to be related to reflux. After I called the nurse, she prescribed protonix to replace the prilosec he had been taking--he took both for a few days and that helped, then only took the protonix. Since he went off the steroids they haven't come back, even after starting chemo.

neverquit
Posts: 221
Joined: Oct 2010

Thanks karenbeth. I will call the Dr./Nurse and see if we can get him that prescription. That would help tremendously if we can get the hiccups to stop and not come back.
Did they ever tell you why this happens?

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

it is what it is - mantra of the house ha ha.

i got fired from my job right before his surgery. It's a blessing and a curse - I'm getting unemployment, but i'm losing my mind from being home all the time. But it seems that when I do leave, that's when he has problems.

I'm reading everything - good to know just in case :)

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

Same here - it seemed that every time I left him in the hospital with those words, "go home and get some rest, we'll take care of him" echoing in my ears, something happened. After the last one, I camped out on the recliner in his semi-private room. The hospital rules say this is not allowed. Since his roommate had his wife on the other recliner, I figured no one could object (they were our new best friends anyway, since he was an EMT and she kept an eye on Doug after the last "something" happened, until I could get back to the hospital, breaking all speed records).

Being home all the time was tough, too. I didn't lose my job, as I had a bunch of leave and they had to let me take it, but I warned them I was not coming back when it ran out if he was not a lot better. After a while, it seemed kind of natural to always be there with him. Going back to work was hell. He just recently went to see his doctor without me - the first time. It was weird for both of us.

It is what it is - not the worst mantra.

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

I thought it was my imagination that those "something happens" only occur when I'm not at the hospital. He seems to rest much better just knowing I'm here. The "go home and rest" doesn't work to well for me, anyway. I find my self obsessing about getting back to the hospital when I'm home, and vise-versa when I'm at the hospital I obsess about getting home.

And I say skrew hospital visitation rules. We all know our loved ones get better nursing care when we're lurking around after hours. I emptied half a dozen of my husbands bedpans last night, (the lactulose is working, Thank God) and held the emesis basin this morning, then helped him shower and changed his sheets. The thin holiday staff at the VA is glad for my presence this weekend. I'm honored that he's allowing me to care for him and be with him during this time. Although, I am pretty tired after last nights pooping marathon LOL!
Penny

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

April,

I didn't realize your husband was in the hospital. I haven't kept up with the boards these last few days. My heart goes out to you. I don't think there's anything anyone can say to make this easier for you. The best I can do is offer prayers and support. I know what you're going through because in the not too distant future I am going to be in a similar position and it is always on my mind. My husband hasn't lost his larynx but he has mets all over and I can see him getting worse day by day. It's horrible to feel so helpless. Sometimes the doctors & nurses can be so clinical and matter of fact. I guess they have to be that way to be able to do their job every day. I just wish they would at least sound a little sympathetic. Don't let them chase you out of the hospital when visiting hours are over. Tell them you want a blanket and you want to stay there - period.

Remember girl you're a New Yorker. You're tough. You're a survivor.

We are all here for you any time you need us.

(((BIG HUGS))) to you and your husband

Skipper

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