January 2014 Surgery Sisters
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ugh I just typed this long post and it got deleted!!! Long story short, I ended up in the ER Thursday morning. Couldn't stand my stomach hurt so bad. They ran tests and came back w u have a hernia! No shit!! I told them that when I walked in the ER doors!! I was there from 1130-630 they sent me home w pain meds and said follow up w surgeon. Ugh!!!
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Ugh is right! Beverly, I hope your surgeon can get you in asap.
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wow Beverly...
I understand the uggh... have had the same problems with doctors...trying to get them to get it together and communicate is very frustrating. keep at it girl..make them listen and help you out ASAP!
Mary, how are you doing? with all that you have going on with your mom and John, not to mention yourself, I just want to thank you from the bottom of my heart for continuing to support us here on BCO.
E
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I know this may be a tmi post, but I think I can vent here and not be judged- I may even b understood.
Since my hysterectomy, I haven't had uch desire at all to be sexual. It hurts, I don't get them same sensations as before, at times I'm incontinent, I have no nipples, I have a double hernia etc etc etc. my husband was just trying to initiate and I told him to stop. I said it doesn't help that every day I feel like I'm letting him down because everyday he initiated and I say no knowing what the outcome is going to be- him frustrated and me crying. Well this morning he blew up and asked if we r ever going to sexual again.... I tried to explain that right now I just don't feel sexual .. It hurts, doesn't feel good, my bladder leaks, my stomach hurts etc. he comes out with this has been the excuse for years now! I just got out of bed and walked away. I tried to explain to him that I already feel less than a women- my boobs are sacs of silicon, I have 8 inch scares going through them no nipples no sensation I'm not sexually aroused and when I try it hurts like hell and. when I need to stop he gets pissed. I said what are u going to leave me over this and his response was if I was I would've left years ago!
What do I do with this? Ugh I hate Cancer!! It takes away so much of u!
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Oh my gosh, Beverly, I think you just described the very real problems of the side effects and the wreckage that bc leaves in it's wake.
Maybe you missed our previous discussions on this thread....most if not all are facing this issue to some degree. I went to the Women's Health division of my clinic to see a therapist and they recommended DHEA suppositories - something that has been proven to work for treating dryness and atrophy. BUT no studies on bc survivors have been done to prove that it's completely safe. This is an issue for us survivors that has not been addressed or properly studied. This is a HUGE quality of life issue and more doctors need to be trained in how to help women. Start with your gynecologist. She may be able to recommend something or a specialist to see. I've read that there is a new product on the market now for treating lack of desire for women, but it's the psychological damage as a survivor that is hard to address. So many things at work here.....
Like everything else there is no one single answer or magic bullet. It's like all the rest of it. You gotta ask for help and don't leave any stone unturned. Make the doctors see this is a problem and it's important. It's your relationship that is at stake.
At least your DH said that if he would have, he would have left years ago....meaning, I think, that he's in it for the long haul?
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Eve,
Oh, thanks so much, dear friend! I love trying to help others on this thread if I can. You made my day. Nice to know that someone cares...
Ok, my turn (and thanks for asking by the way!) ....
I'm not doing so good. It's been a real struggle during this phase of DH's recovery. Even with advice from others who've been there. They all say be patient. The docs say it'll get better, but the recovery is just sooooo soooooooo slooooooooow. DH just doesn't feel well and he says it feels like it'll never get better. Eating is so hard. I had no idea just how hard this would be for so long. It's nothing like what is was for my recovery - it's a hundred times harder. It's been really tough to try to cheer him up. He doesn't have a fighting spirit and it seems like he is giving up. I really worry about him. I've tried everything. Nagging doesn't work, but the other day I just lost it and started yelling. Then he gets more depressed and withdrawn, of course. God, I've been doing this every day all day since August - trying to get him to eat and find foods that will work. It's a full time job and I haven't had a day off. Not one single day. I've thrown out so much food it's ridiculous. I've completely revamped my pantry and the refrigerator. I LIVE at the grocery store and have collected recipes and concoctions that are supposed to work. All my organizing and regrouping doesn't seem to matter. Oh and our dishwasher broke down so I have piles of dishes all the time.... aargh!
We have our good days and bad days. The bad days are really really dark days. We both have SAD, so that doesn't help at all. I try...I decorated the house and put up lights. He's been really depressed for a long time, which worries me because he needs to get back to work. and that seems to have fallen by the wayside. I know it will help. He's GOT to get back if nothing else to keep us from going in the hole. But now we're thinking maybe wait until after the scan. I'm dreading what the scan will show. I know if there's any cancer left he will not be able to fight anymore and he'll just want to give up. For some reason he just doesn't have that survival instinct and I'm running out of energy to pump him up.
Or maybe I just haven't tried hard enough???? Maybe I need to rethink how to motivate him. It's hard not get to depressed or show that I am. He's not the only one - I'm getting tired of of this shit. We both want this to be over, but it won't ever be over. Not for a long time. We all know it takes years for the new normal after cancer and his side effects are going to be even more impactful on everyday living.
I keep wondering why can't life be easier for us?? Haven't we been through enough already? What did we ever do to deserve this? All of our friends are doing great - they have their careers and comfy homes, or they're retired, spending time with grandkids, enjoying the holidays. Oh yeah, Christmas....this is a really hard time of year, so that doesn't help!
BUT all that being said we ARE seeing small improvements. This morning he ate his cereal without the usual delays and without me nagging him. I just needing to keep pointing out all those nasty side effects that he doesn't have anymore....and he'll say, "Oh yeah...."
So there is HOPE!!!! Just gotta remember where we were a few months ago and where we are NOW.
Thanks for letting me vent! I feel better now!
)~M
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Oh my gosh, girlfriends! It must be because we are coming up on a two year anniversary and biorhythms are off.
Beverly, there is a thread on bco re: getting your mojo back. I have browsed through it a few times. What you are experiencing is normal! I agree with Eve-- talk to your gyno. Mine suggested Replens to help moisturizer so it doesn't hurt. I have also gotten comfortable with the use of more "toys" for me. Once I get started it is much better. Desire is almost impossible without any estrogen in the body--it is just a fact. And, it is hard to feel sexy with our battle scars. But there are things that can help. Hang in there, girl!
Mary, you and John have been through so much without a normal moment to yourself for two years! You deserve a rant...and never EVER think you have not done enough! How you care for John, your mom and everyone in your life is nothing short of amazing.
Eve, keeping you in my prayers for dec 21.
One week left on these daily IV antibiotics before moving to oral. I see the PS tomorrow and hoping he is feeling good about the progress. Thelma is looking better but I can feel something that feels like an air pocket beneath the skin and there is still a crusty spot near the nipple which means it is not totally closed yet. Keep your fingers crossed for me!
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Mary? why did you delete? your post was perfect! love you lady.
Beverly....Ann is CORRECT! things don't work the same...you were catapulted into menopause...hard enough to get there naturally...aren't we lucky to be women?
Ann...lol for being so honest. We have a toy also...hubby got it and buys lots of fun oils at "the adult store" hey if you don't use it you lose it" lol
I have to be coaxed into sex...I guess I am afraid the girl wont work...She has a hard time getting aroused...but when I do say yes...I am amazed why I say no...
before I was with my hubby I hadn't had sex for at least 7 years...Replens was a God send. I don't use it now.....but it works.
Fingers crossed for you!! Hoping Thelma behaves.
My cancer boob is named Babette....lol she is about to become bobette......
hang in there all!
love
E
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Ann - I named mine Thelma and Louise after the movie - absolutely loved that flick!
Eve, I know, I know, but I read my post back and just couldn't stand it. Besides, it felt so good to push the button and BLAST those words about my crappy life right now into cyberspace!
And sInce I can't take up boxing, today I'm going to clean, clean, clean my house to try to wash my worries away and suck up all that dirty stuff, lol. Hey, whatever works....
Love you too and hey, thanks - for everything!
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Get it Mary!
Love the graphic.
I've spent the day vacuum sealing 80lbs of various meats and cheese. I hate the chicken breast part...lol I like meat just not raw meat. Oh well, the freezer is full and I am grateful for such abundance. Now on to make sausage and lentil soup.....yummy.
My son Steven just texted me. He had his appointment for the lump in his breast today. He will have an ultrasound and mammo very soon....how do they do a mammo on a guy that is in perfect shape...what do they squish in the machine? oh well, I'll let you know. Do guys have milk ducts? Just asking...I'll goggle it....man oh man...this kid spent 9 years as a Marine..toured in Iraq, got shot at...this BETTER be something simple damn it. At least we have a good VA hospital here.....
love
E
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Wow, Eve, that's impressive! You must have a chest freezer.
So, I've decided the only way to get DH off this tube and have him consume 2,000 calories a day is to eat a lot of small meals throughout the day vs. 3 times a day. We've been doing the dairy thing - eggs, cheese, whole milk, hot cereal with protein powder, etc. but it just isn't enough calories per meal. He hates Ensure, Boost and the other supplemental drinks. Doesn't like ice cream anymore. He can't really eat much in the way of bread - it's too dry and I was under the impression that meat would be the last thing he could eat due to the difficulty with swallowing, but maybe I should try it. Gravy would help, but I've never made gravy in my life (really).
I've never been a big meat person and wouldn't really know where to start. I make mostly chicken or fish so I don't have any good meat recipes in my collection except for meat loaf. Your sausage and lentil soup sounds good. Maybe sausage with eggs? Turkey pot pie? It's so frustrating because if I invest a lot of time cooking one dish and he can't eat it, then it's pretty much headed to the garbage can. I don't want to put on pounds, if you know what I mean...(sigh).
I'd appreciate any suggestions.
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well ladies I had my consult with the surgeon. I'm having both hernias repaired on December 14 next Monday. Got lots to do before that!! Not to mention I only have like 13 days left of paid leave... Here we go again! He said it's like 4-6 week recovery.
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Yay Beverly..
Hopefully this will take care of a lot of the pain you have.....help you feel better and ind a new normal...
keep us in the loop
E
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Mary
do you have a kitchen aid like mixer that you can add attachments to?
I can grind up meats and veges on mine. I can do that in my ninja bullet thing too.
I'm just thinking if you can grind up meats etc John might have an easier time eating and get his taste buds back.
I order my soup mixes from soupsonline.com The soups I order are organic and for the most part gluten free with no preservatives. one packet can make with some sausage 12 servings really super economical. We freeze the leftovers in mason jars. Nate will pull a jar out of our ..YES chest freezer. and take it to work for his lunch. I use our crock pot a lot also..easy peasy and the beef or chicken comes out super tender.
If you can give me some specifics about John's preferences for seasonings...I might have some really good recipes
By the way...I've gained a bunch of weight ..at least 20lbs since BC surgery...oh well...I hate it, but have bigger things to deal with right now as do you. Think Rubenesque or voluptuous. Used to be the sexy style.
I' have some more suggestions for food tomorrow...getting late.
E
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received an email from hr that if I don't return after my surgery by January 6 I will not be paid. My sick days run out on January 6. January 4 marks the 4 week point. Dr said 4-6 weeks. I can assure u that if I need to go 6 weeks and go unpaid for 2 weeks my husband is going to shoot me and my bills will not be paid. Not to mention, there goes money I was planning to put aside for our family spring break in Orlando!😢 This sucks!! The surgery has to happen and I don't want to go back too early and cause issues.... But I need to be paid! Ugh here we go again! My colleagues are like that's why we save our days up we have 100 plus days of dick leave... Yeah well I've only been in the district 3 years and each year my days were depleted because of surgeries! I can't catch a flipping break
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Beverly, the only way we have survived with John off work, first on FMLA leave (unpaid) and since that ran out weeks ago, is from sick time donations from his co-workers. Does your school allow for that kind of a program? There are some employees who have been there so long and have so much - especially those who are about to retire - they can't possibly use all their sick time. I'd call HR and ask what could be done. It's just been awesome how people have come through for us. My husband has been off work for 4 months and if it wasn't for everyone's generous donations we'd be draining our life savings at this point. It's also allowed us to stay on his insurance. Without that, our only other option is COBRA at over $1,500 month. That being said, he's about to run out of donations and needs to get back to work. I also need to get a job as soon as possible. Cancer is so devastating in so many ways, including financially.
Eve, I have a NutriBullet. Last night I was thinking I could maybe try do the fruit and veggie thing and add some protein powder and nuts. I also have some frozen venison that has been in the freezer for quite some time. How long does that stuff last? As far as seasonings, he has NO sense of taste. Nothing. He can chew and swallow pretty well, it's the lack of taste that has him so depressed. And absolutely NO hunger whatsoever, so he has to force himself to eat. He used to love hash - something his father made when they were kids. Soups are good but whatever he eats has to be high fat, high calories. If it's too dry it's hard to get down, so meats and potatoes are harder to eat unless they are very moist. Yes, I gotta get my crockpot out and figure out some recipes for that. I feel so inadequate. My cooking really sucks.
Oh, I just re-read your post. Kitchen aide mixer. Got it. It's on my shopping list!
The other thing I figured out is that we should eat less more often. He can't eat that much in one sitting, so I try to have us eat a "meal" every 3 hours. It's been a lot of work to say the least. I just hope we get good news with his scan.
I guess I've been "lucky" in that I've lost 10 pounds since my BMX 2 years ago. Mostly from stress these last 4 months. I've been running around quite a bit taking of the hubs, plus trying to stay busy to keep my mind off things.
All I can say is that I'm hoping for the best for all of us. I sincerely hope that things turn out well in the end. It's like you said, Beverly...here we go again. I guess that's why you always have to have a Plan B (and C and D).
Luv,
M
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Mary,
real quick, it is late...but, what were the things that John liked to eat before the cancer crap? What was it that he said ummmmmy?
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Ok, here's what he likes (I asked him today just to make sure):
Comfort food. Good old fashioned homecooked meals - meat and potatoes - beef pot roast in the crockpot with potatoes and veggies. Cooked so it's tender - doesn't have to be an expensive cut of meat he said. He's a very traditional guy.
One time he and his buddy made some Angus rib eye steaks up north. Something I'd never tackle at home. I'm more of a chicken and salads gal.
Gravy would help to add calories. I'm looking for a minimum 400-500 calories per meal. More is better. He can't eat a lot of food at once. We went to McDonald's for lunch just to see if he could eat a burger and fries. He was able to eat most but not all of it, and he said it didn't taste anything like it should. I think he's ready for any kind of solid food now, so that's awesome! Problem is, his taste buds are not working at this point, so when he eats something delicious, he doesn't get any satisfaction from it. I hear that it helps to use stronger seasonings.
We are on our 2nd day without the tube. Making great progress! He just needs to maintain his weight and not lose anything between now and Dec. 28th.
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Fabulous news about the feeding tubes!
Funny, just made theeee best pot roast I've ever made last night. I am not a fan but nate loves it. And I really liked this one.
I use fairly lean chuck roast. I can't tolerate a bunch of fat.
Dredge the chuck in flour and season with pepper and salt. I go light on the salt. Since we have tried cutting out as much salt as possible (high blood pressure) a little goes a long way BUT it does add to the flavor.
Then brown in a frying pan with a bit of oil (tablespoon or two) both sides of the chuck 5 minutes a side.
I have the crock pot heating on high while I am preparing the meat.
I then throw in the potatoes...just cut up russets to the size of a red potato or I use these lovely potatos from "The Little potato Company" They are out of Alberta so I would think you could get them in Minn.
Toss in baby carrots, the meat and top with a sliced onion.
Drizzle Worcestershire sauce over all that and let her go for 5 hours on high and then turn it down to low for another 3 or four hours.
As far as gravy I use McCormick powered gravy mix. You can mix it with the juice from the pot roast or for John use cream, more calories that way.
This is so easy and you don't have to watch it all day.
Chicken is easy too. Brown it with pepper..I only use chicken breasts. Throw it in the crock pot with a bit of lemon juice, 1 cup white wine or water if you don't use wine. Add 2 sprigs of fresh rosemary....let it go...chicken cooks faster than beef so maybe 4 to 5 hours. You can make gray with Mc Cormicks chicken gravy mix and serve over rice.
Really fattening is pepper sausage gravy (just buy the packets at the store) with ground up sausage poured over biscuits. So southern but yummy and comfort food to the max.
Hope this helps.
love you
E
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Thanks, Eve. I'll try it! Sounds so easy and delish. I think he has a hard time eating because he gets frustrated because the taste isn't there. Kind of like having sex with no feeling. Wait. That sounds familiar, lol! Hmmm.
Yes, sausage. Of course. I've spent most of my life trying to avoid high fat, high calorie foods, so this is a learning experience for me.
Have you ever thought about writing a food blog? I love writing but my cooking is way too unpredictable!
M
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Mary,
started thinking about taste and it dawned on me that taste has a huge connection to smell. The two go together. Remember when you have had a cold? A stuffed up nose and nothing tastes good? Same thing could be going on with John. I found these two recipes that sound really good....I am going to try them. Funny that the organization is from MN. the link there has a recipe book that may help. By the way the coleslaw is REALLY good for you. It has been proven to help get rid of toxins in your system. Rob swore by coleslaw. just a thought.
well I just looked at the recipe book on amazon you'll have check out the reviews...not so good...but I know you like the library...so I would check that out first. I'll keep looking....
Oh and my kitchen Aid mixer with the grinder attachment...LOOOOOVE it. Pricey but saves time. We also make our own ice cream with fresh strawberries...yum K I'll stop now.
1080 Montreal Avenue St. Paul, MN 55116 651-695-1940 Fax 651-695-2791 www.aan.com I coulndnt fine the link to the book here...sigh
Barbecue Chicken WrapsServes 4 Preparation time: 45 minutes Easy
Great texture (bacon, tortilla and chicken), varied temperature, and spice (jalapeno peppers and
barbecue sauce) provide all the necessities for stimulation of the normal sensory system of the
mouth. This recipe was given to us by a patient with total loss of smell and inability to recognize
any flavors.
INGREDIENTS2 chicken breasts, cooked and shredded
2 cups barbecue sauce
¼ cup crumbled bacon
4 10-inch flour tortillas
1 cup shredded cheddar cheese
1 cup creamy deli coleslaw
½ cup chopped pickles
¼ cup chopped jalapeno peppers
PREPARATIONIn a saucepan, simmer chicken and barbecue
sauce together for about 10 minutes. Add
bacon and stir until heated through. Remove
from heat.
Heat tortillas as directed on package. Spoon
chicken mixture into center of each tortilla.
Top with ¼ of the cheese. Add a spoonful
of coleslaw to each side of the tortilla, and
add chopped pickles and jalapenos as
desired. Fold up the bottom of the tortilla
and roll it up. Serve immediately.
Barbecued Ground BeefServes 6 Preparation time: 1 hour Easy
This recipe can be enjoyed by all. The texture is excellent, and the spices (mustard, ketchup and
vinegar) can be increased for those with more impaired smell and taste.
INGREDIENTS1 pound ground beef
1 cup chopped green pepper
1 cup diced onion
1 cup diced carrot
1 cup diced celery
2 tablespoons prepared mustard
1 cup ketchup
1 tablespoon vinegar
2 tablespoon liquid smoke
1 teaspoon cloves
1 teaspoon salt
PREPARATIONBrown meat and mix in the rest of the
ingredients. Simmer on low for 30 minutes
until the vegetables are tender. Serve on
toasted hamburger buns.
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Eve, thanks so much for all the recipes. I will try them.
Yes, it's so hard to relate to what he's going through although the cold comparison fits perfectly.
Tonight I made a bratwurst sausage patty and cheesy potatoes and he ate half of it. Something we would have never eaten before. We go for calories and protein vs. taste because nothing is appealing. The radiation damaged all that tissue and his poor tongue. I think that no matter what he eats right now the taste will be diminished no matter what and there's no way to make it better until it all just heals. Time heals all wounds...hopefully. I worry what all this fat is doing to his cholesterol.
The barbecue idea is good, but I had read that acidic foods would hurt his tongue so I stayed away from ketchup and all that, but who knows, maybe he can eat it. At least his tongue sores have healed up although he has this thick, yucky coating on the back of his tongue. No wonder things taste gross.
Personally I think he is looking better and better now that he's off the tube and eating "normal" food. I am just amazed that we are doing it!!!! It seemed like such a monumental task before to get him to eat anything (and for me to make something he could stand to eat). Both of us went through many "fails" these past several weeks. It's like .... when you make something, it's always made with love, right? And then when it doesn't turn out or he doesn't like it, it feels like rejection and failure. Sounds kind of lame, I know, but it's how I've been feeling. BUT now he's eating more and more and it's just awesome! We can both see him improving - finally!
I just think it's bizarre that he feels no hunger. None whatsoever. I don't think that is normal because the docs and dietitians didn't say much about it. But I think everyone is thinking that same thing....that he's depressed.
I'm learning a lot about food and nutrition. You know, it's amazing how many calories are in chocolate kisses. Just 9 pieces have 200 calories. Wish I would lose my appetite and my taste for chocolate. I. Can't. Stop. Eating. Chocolate!!! It's called stress eating. I think I"m going to gain back those 10 lbs. unfortunately!
So....How are you doing - are you getting nervous about your surgery? IT'S ONLY ONE WEEK AWAY!
When is Steven's mammo?
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Beverly and Eve, just wanted to wish you good luck with your upcoming surgeries. So sorry you are dealing with this right before Christmas. I hope that all goes well and that you both have the best of all possible outcomes!
Ann, heal up girl! I'm sure you'll be good as new before too long!
Diane, we haven't heard from you lately. I hope you're okay and that you're just too busy having fun to come here and read all this .... stuff.
To Everyone - I hope you are happy and healthy!
Merry Christmas to all my surgery sisters! I wish you joy and happiness during the holiday season and always, always what I wish for ... a cancer-free future for each and every one of us!
Love,
M
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I totally get the "made with love" and then being rejected....which meant I was being rejected...Ummmmm no not anymore. took me a loooooong time to get over that little scenario. Now I do everything with love and if you don't like it poop on you...unless I really burned dinner...I don't do garlic bread well....so that is nate's job now. lol
Some times things work out and other times they are just mediocre but if my critics didn't have a hand in the making they need to step up or shut up! TIARA time...lol
I get the not feeling hungry thing....I am rarely hungry, but I eat because, you know, I have too. weird. Just not a foodie but I do like to cook. I do crave chocolate once or twice a year and love bean dip. Maybe it is depression? A little food goes a long way for me. But I still gained weight....maybe it was the loaded baked potato skins.? lol love them.
It seems that John may be rounding a corner. Slow and steady. Can you get him involved in cooking? Smelling herbs?
Yup, Mary the surgery is looming...I tend to downplay the significance of all this BC stuff... What am I going to do anyway? Taking it one day at a time. We'll see. Sheesh I am gonna have at least 6 people at this next surgery in the waiting room. I try to tell them they don't have to be there..but they insist.......thinking they will have a party going on. man I so love my family.
Love the poinsettia....thank you and of course Merry Christmas to you and everyone else.
E
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well, getting ready to head to the hospital for yet Another surgery! Just thankful this one doesn't involve cancer!! Here's to a no surprise surgery and smooth recovery....
Eve, when is your surgery
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How ya doing Beverly? Hope everything went well today.
Keep us posted...feel better
Eve
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eve,
I am in soooo much pain! My stomach hurts like crazy. I know most of the pain is coming from the gas they used to blow up my stomach. I can't eat, pass gas, go to the bathroom etc!! The pain is excruciating
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So sorry Beverly,
Can you get up and walk around? Even a little bit of walking can help dispel the gas.
eve
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yes I've been up a few times. This last time I was so nauseous I dry heave omg!!! I yelled for my husband. He grabbed a hold of my arm and I passed gas! We just looked at each other and smiled. Lol
I am saying right now that this is my last surgery!! I can't do this again I'm in so much pain!! Even more than I remember w my c sections and hysterectom
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lol
funny the stuff we laugh about now. It's like what evah!
Keep laughing and feel better.
My surgery is on Monday. We'll see what happens with that.
Eve
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