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new and future flat sister, with questions

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  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited October 2013


    Bobo


    I stayed in my recliner the first nite or 2. I only sleep on my left side, have a body pillow that worked well. I had 4 drains, nasty things, always in the way.


    Itchey nose was hard to reach, higher was taken care of with a butter knife.


    Nuking stuff is a good idea. If something was higher than I could reach, got creative. Step stool like kids use in bathroom to brush teeth was enough height. I'm shrimpy at 5'4.


    Driving the first day was,,,,,,,,,,,,um, challenging. Be sure you have a small (10" x 10") VERY soft pillow to put under the seatbelt, over incision. I used mine for months, it's now in Spookies car seat. But she lets me have it back if I bribe her.

  • bobogirl
    bobogirl Member Posts: 2,083
    edited October 2013


    Spookie has a car seat! I love that. It is nice of her to share her pillow.


    I am so grateful for your advice. Welcome Hollyboo! I have not had radiation. Not sure how much of this thread you have read, but we are quite naughty girls in addition to giving one another bc advice. Please note our Ariom very often smuggles puppies under her blouse! Her uni status allows her to do this. She has nearly 1,000 puppies at her house now. Right, M?


    M, thinking of you on this anniversary. I love Vi. XXX

  • Ariom
    Ariom Member Posts: 4,027
    edited October 2013


    Bobo! Thank you so much for my photo, and please thank the Princess for my picture. It is very special to me!


    Ha Bobo, I do have a bit more puppy control these days! LOL


    I have spent the afternoon arranging our trip to Melbourne for the Memorial for Colin's Mother. We will be staying for 3 nights, so I have arranged for us to stay in an apartment in our old suburb and Bec can stay there too. It will be nice to catch up with old friends. There are a few flying in from interstate.


    I hope everyone had a good rest....chat later, bedtime here...M x

  • grammaB
    grammaB Member Posts: 1,118
    edited October 2013


    Hi HollyBoo and welcome! I was fortunate to be able to get away with just the BMX, no rads, chemo, or hormone treatment so I can't advise on radiated skin and oils. But I am just at the stage where I am looking for oils to use on my scars, so I will watch the responses you get.


    I have been gently massaging my whole chest since I was freed from the ace bandage I wore for the first 2 weeks. I'm not sure how much movement to expect at this point (a bit over 8 weeks post surgery) but I hope it will be more than I have now, I still feel pretty tight across the chest. I had my last appt with the "creepy" PT guy yesterday and even he didn't know what I should expect as far as more movement. I see the MO in Nov, maybe he can tell me more. I do have full range of motion but will continue the stretches.


    Moira, I am so sorry for your loss! This was info I didn't have, being sort of a newcomer to this merry band. I can't imagine losing a child. I can't help but worry about my kids, DD is police & SWAT, DS is a fireman, but I have learned to put it way back in my mind and not think about the dangers they can face.


    bobo, I really studied everything I did around the house the week before surgery. I'd ask myself, could I do that if I couldn't reach up enough or lift the weight. Anything that was going to be problematic I moved lower or decided if it was really necessary at all for a while. I even bought some paper plates and plastic cups for the first week or so so I didn't have to wash many dishes. I live alone so I really had to have all my ducks in a row prior to coming home. My DD could only stay 3 days, one the day before; second, day of surgery; third day I came home; and she left the next morning. I was alone for 10 days until DS could come. You are fortunate to have DLLP and the kids around to help you.


    Don't worry too much about what you won't be able to do, I think you will be totally surprised at what you will be able to do and how soon!!

  • Ariom
    Ariom Member Posts: 4,027
    edited October 2013


    Hi gB,thanks for the kind words. Vi was an adopted Vietnamese boy who was the most wonderful addition to our family. He and I were terribly close.


    I can imagine how you'd be so proud of your children, but have to not think too much, about their chosen careers. It would be difficult.


    I am so glad Bobo has your input about the BMX. I am doubting we'll be able to keep her from overdoing it too! LOL


    I'd absolutely encourage you to keep up with the stretching. I think I have better range of motion now than when I started:)

  • bobogirl
    bobogirl Member Posts: 2,083
    edited October 2013


    How are you doing, M, during this challenging anniversary? I imagine you are thinking about your boy so much.


    Hmm. I hope this is not TMI. I had eight miscarriages. The last one was... well, I had named the baby. And it's not the same as having a real boy that you adopted. But... I think about the anniversaries. The anniversary of that last day, and as it turns out I had a cousin who got pregnant at the same time, so I am unable to stop myself keeping track of the birthday anniversary as well. So anyway. Just wanted to let you know in some small way that I know how you feel. Love you.

  • Ariom
    Ariom Member Posts: 4,027
    edited October 2013


    Hello Bobo!


    Thank you, I know you understand!


    Never TMI here, ever!


    I am so sorry for your losses, I can imagine how painful that was for you, it is the same pain response, no matter the age. I absolutely understand your remembering anniversaries.


    How are you doing? I am thinking of you in the tiny house, deciding on what to put together for the Hospital. I am so glad it has turned out as you wanted, but it has been a long time coming.


    Take care of you! M x

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited October 2013


    The loss of a child is a terrible thing not matter how long or short the opportunity to love was.


    Makes me feel petty to complain about my cold/allergies, insomnia and the boy's pooping accidents.


    Sweet dreams everyone.

  • Ariom
    Ariom Member Posts: 4,027
    edited October 2013


    Hiya Zills!


    All our experiences are valid, there's never anything petty here.


    Did you get a good rest, how are you feeling?


    The allergies are hitting everyone hard here. They reported on the news that this is the worst pollen allergy season in decades. The mozzies are out in force too...oh joy!


    I hope the boy's pooping accidents become fewer, soon:)


    Hugs from me! M x

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited October 2013


    Thank you M.


    Boy up twice. Baby up once or twice. Have little patience. Catch myself yelling and it's only 7 am. Don't know if it's lack of sleep or hormones. Have to live with hormones. Been on them 10 days. Going to take them in the am and see if that helps.


    Not wanting to do anything but the very necessities. Ashamed to say have a sink full of dirty dishes and laundry that needs to be put away and has for days. Taste buds coming back but not really hungry except the middle of the night.


    I don't want to be like this but if it's the hormones, I don't have a choice. Maybe Effexor will help but scared to add anything else to the mix. It messed with my stomach before. Though I see from these boards that some Drs don't think ER+ women can be too skinny.

  • bobogirl
    bobogirl Member Posts: 2,083
    edited October 2013


    You guys are so kind. Many thanks for that. Z, I want details on the pooping accident!


    Which hormones? Is it tamox? I heard that about too skinny as well. I am hungry in the middle of the night too! Poor baby (you). Don't be too hard on yourself for having a short temper. Is there something they can give you instead of Effexor for hot flashes? If the upset your stomach?


    M, I had what I call the "working-class gym" yesterday: unpacking, moving furniture, trying to get things settled here in the tiny house. DLLP is painting our bedroom this weekend, we're sleeping in the front room! Not sure what to get together for hospital, really. I have heard people pack and then they don't use any of it. Will you all help me make my list? Pajamas, or just wear hospital pj's? for example.


    More worried about food and coffee. Coffee closed on Sundays! And bobo. Board him? Or ask my brother to take him? And... I have not told anyone yet. I am so enjoying it. If I tell my mom she will be crazy about it over thanksgiving and tell everyone. With my partial mx in 2008 she did that. And you know what? I don't want to carp on about it, but I have five brothers and sisters, and four of them didn't even call me! Or send a card! I have left it behind, but I don't want to tell everyone and then sit and notice they don't even care, and now I am just two hours away from them.


    People who vote for my telling no one, and just living my own life, come forward! I don't mean 'no one.' Just no one in my immediate family. I cannot begin to accurately depict how crazy and self-centered and manic my mom became in 2008. She got her whole school involved -- I was in PHL, she in Florida -- and told everyone, and got thousands of amounts of attention for herself from it. Idesim, help me out here!


    So, if you think I can't stay totally 'in the closet,' and private, then tell me a good plan!


    Don't forget: poopy update! XXX

  • Ariom
    Ariom Member Posts: 4,027
    edited October 2013


    So sorry Z, F hormones! Hope it's just the adjustment time and soon will settle down to minimal SE's, or hopefully none!


    I understand your reluctance to add more to the mix, but sometimes it just might be the right thing at that time.


    Although not the same, I know, I have been refusing drugs for years for my RA, playing one off against another. I have been on steroids for so long now, my bones are in a bad way, and several of the drugs they have tried to get me on are now linked to BC. I had to fight my Gyn to avoid hormone replacement even though my Mother had BC. It's a damned if you do, damned if you don't situation.


    Take care.....hugs to you M x

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited October 2013


    Bobo. It's your story but I definitely wouldn't tell at thanksgiving. Too much drama. You will have to tell eventually either right before, if you need help, or afterwards. Use it to your advantage to skip family Christmas and start a new tradition! You should feel better by then but they don't have to know.


    Can whomever is watching kids, watch bobo too?


    Don't understand the coffee comment. How long are you planning to be in the hospital? Surely there's a coffee shop open somewhere nearby.


    I wore my pjs there and back. Was in hospital gown during my stay overnight. I recommend lotion, Chapstick and maybe a brush and something to keep your hair away from your neck. You have to wear compression booties.

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited October 2013


    also toothbrush and panties if you feel like they are dirty after being worn for an hour or so. The hospital provides a lovely gown, socks, cap and maybe mesh panties if you are lucky. I packed my own tea bags.


    Where O' where is Idesim today?


    Did you know bobo back in 2008?


    Do you have more herceptin treatments?


    Did your scalp breakout when growing hair? I feel like a teenager.


    How long after chemo did your taste buds come back? Chocolate tastes salty:(


    How's joe, the cat and your food swaps?

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited October 2013


    bobo. What color is the bedroom?

  • ndgirl
    ndgirl Member Posts: 950
    edited October 2013


    Bobo, 8 miscarriages, how my heart is breaking for you. Losing a child has to be the worst.. my husband lost 2 younger brothers in car accidents... not in the same accident.. but 6 weeks apart! his mother ended up in mental ward for awhile.. why not? and she had just lost her husband at age 56 the year before! I think if you want to keep this to yourself you sure deserve to! sounds like telling mom and family would just add more stress and that is the LAST thing you need! as for doggie.. my bs told me not to be around animals until healed, as they tend to jump up on us, of course in love and glad to see us, but never the less could possibly do some damage to chest area. My son had a golden ret. that was only about 7 months old, but they kept him away from me the few days I was there.

    I too packed alot of things I never used and had to haul home, I did take my own tea too but hospital had good tea, never used throat lozenges because I had the pain block and no breathing tube so no sore throat, ask if that is what you will receive, sure worked great for me, basically no pain. Zills idea about pj's is good, I wore lounge pants there and home as well.


    Zills, the hormones are sucky arent they? hope things get better soon, hang in there.


    Ariom, death anniversaries always hurt dont they?


    I am home from my babysitting job, whew I am beat, didnt get out of bed until 10 this am, I am pooped! (no pun intended Zills)!

  • gramwe
    gramwe Member Posts: 238
    edited October 2013
    I love your poop-n-post. Don't stop, never TMI. Which hormone? Are you in F Femara he11 with me?

    Bobo, if I had my time to do over I would not have told any relatives outside of my children and husband. My parents also have a male child, he in no way resembles a brother to me. He never visited or even phoned after my surgery, in fact he never laid eyes upon me until my uncle passed away 5 months after my surgery. His wife sent a tacky tiny flower arrangement to the hospital. Found out later he was milking my surgery and "tragic diagnosis" for sympathy for him from his friends. It hurt, it still hurts. Out of all the horrible things he has done to me in life, I think it hurt the most. So from my point of view, keep it close to home. As for the hospital bag. I packed pj's, toothbrush, toothpaste, moisturizer, hairbrush, slippers, lip gloss, I travel lite.

    M, your air fryer sounds great. So glad the card made it around the world to you and arrived when you needed a pick me up. Sending you special hugs.

    Please forgive me if I repeat myself, since I can't post when I want I forget what I've said. DD is at week 22, the size of a honeydew melon. She has picked a theme for her baby shower, Babies, BBQ, and Beer, no frilly pink baby shoes on top of cake squares. No baby games, just a party, for men and women. Of course she wants it here, go figure! I have no idea what I'm doing. Decorations? yes or no? Invitation wording? What else do I serve? Help!!!! Please...
    GP didn't like the sound of my lungs. He wants testing. I don't.
    Ran out of F Femara, new batch of evil drug should be here soon, in the mean time I dropped weight, and feel like ME again. No angry outburst, no joint pain, sleeping, its fantastic, even if short lived.
    OG sees surgeon on Friday. Guess we will know then when and if surgery will be scheduled. Therapists said Wed that it will not be a simple surgery, they will go almost back to his wrist to remove the finger and bones, and even with surgery there is no guarantee of more mobility. Plus he will start a whole new therapy routine for who knows how many months.

    I see we have gained a new poster. Welcome Holly to this little band. There is a lot of support, and wisdom to be gained from these ladies. I may even throw in something intelligent occasionally. I wouldn't bank on that last statement.

    Hugs everyone. Grocery shopping must be done or we will be having kibbles and bits for dinner.
  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited October 2013


    Granwe. Poor OG and poor you. More therapy! Whatever it takes, huh? You are the woman!


    DH went to a pizza and beer baby shower. Men had to bring diapers. Did get an invite. Played cards not baby games. It was after the "regular" baby shower.


    You could still do cake or his and her cake. Think chocolate more like a grooms cake.


    Google couples baby shower or BBQ, beer and babies. Lots of ideas. Guess the menu is set. Could ask them to bring sides. Games and theme optional. Diapers, music, books. Does she not need everything?


    Keep us posted!

  • wirdgirl118
    wirdgirl118 Member Posts: 139
    edited October 2013


    hi bobogirl, I agree, wear pj's to the hospital and put them back on to go home. I was catheterized till midnight the day of surgery then I put on an adult diaper because I hate using bedpan and I had compression socks on each leg. Hugs!

  • Ariom
    Ariom Member Posts: 4,027
    edited October 2013


    Oh Bobo! I missed your post last night, we must have been posting at the same time.


    This will come as no surprise to you, but I wore a pair of Yoga pants and a zip front jacket, to the Hospital, and a pair of capris with a button front man type shirt to go home. Remember, I got Colin to stop at my fave mall on the way home so I could do a bit of shopping. I kid you not, I was in there shopping with my cloth shoulder bag holding the drain:)


    I advise to pack light, it is over so soon, I didn't so much as look at any reading stuff, couldn't focus anyway, for days. I wore my own pj bottoms with a hospital gown and the lovely compression socks. I went home with full makeup, and had washed and dried my hair before leaving. The nurses didn't recognize me when I went to say goodbye! LOL


    I took my phone and charger and used that a lot. I am a tea drinker, and their tea was fine for me. I took my aromatherapy oils which I started massaging around the clear stick on strip I was left with immediately after the big bandages were taken off.


    I had Dexter boarded out for about ten days because we have a morning ritual where he gets up on the bed and lies across my chest. I couldn't deal with trying to change the habit, so he stayed away. It was a good idea all round because he would have hurt me, either in the bed or launching at me on the couch.


    I just breaks my heart to read of your experience with your family. I will never understand how such selfishness can be directed at another family member. Not having had siblings, I haven't ever experienced it directly. My parents and I were so close because there was just the three of us, in a different country to any other relatives. Perhaps a really good thing! LOL


    I would vote not to tell them, not during the lead up to the surgery, if that it the way they reacted before. I would think that the short, sharp, slap, they would feel from finding out well after the event would be what I would prefer. The one thing you don't need, is aggravation. You just want things to run smoothly with no drama.


    I hope this helps Miss Bobo! You know this little family is going to be riht with you all the way! M x

  • wirdgirl118
    wirdgirl118 Member Posts: 139
    edited October 2013


    I agree with packing light for the hospital, and I do not travel light - 7 suitcases came with me on a five day cruise. Of what little I did pack for my BMX, I did read the magazines, chewed the gum, used the toothbrush and face wipes. Used cellphone for texting, watched my television on mute. I asked my BFF, my sister from another mister, who I have lived with since the 1980s, not to come by in the evening so we could both rest. But we texted a lot! Brought adult diapers instead of undies. BTW, Had the best chicken parm for dinner! Freely unhooked myself from everything but the IV if I wanted to use the bathroom. I had had my hair cut into a short style, a pixie style, so I wouldn't feel like a greasy head and could in a pinch use a washcloth to wash my hair. I'm fairly fussy normally but this was my chance to get the F cancer out of me, so I did amazingly well. You rock, Bobogirl, and you will do great!

  • wirdgirl118
    wirdgirl118 Member Posts: 139
    edited October 2013


    Moira, I love that you were shopping with drains in!!

  • Ariom
    Ariom Member Posts: 4,027
    edited October 2013


    Hi ndgirl! You're not wrong about the anniversaries hurting. My Father passed on New Years Day, so I have never really had a good New Years since.


    I can imagine how exhausted you must be after the baby sitting. I had one of Colin's girls, two kids, here on Saturday for a while and they just about ran me ragged!


    Gramwe, so sorry to hear that this won't be an easy fix for the OG. I really feel for you both, what a shit time you're having. It should be a wonderful time with your daughter, not all this stress and medical crap.


    A honeydew melon, my, it is reallly coming along, how does she look? Is she looking really pregnant?


    That F Femara is really awful isn't it! The short time without it, has really shown you just how bad it really is. I am so sorry you have to put up with this.


    I don't have any experience with baby showers, it isn't a big thing here, but sounds like a lot of fun, and a lot of work. You're amazing gramwe! Hugs to you all!


    Wirdgirl! I snorted my banana smoothie right up my nose when I read of your preference for the adult diaper to a bed pan! LOL I'd never have thought of that! I wasn't catheterized, and I hate bedpans too, so I dragged those IV poles and the drains with me to the bathroom every time I had to go!


    I am getting more into the exercise thing. I was a bit slack while Colin's Sister was here, but I am back on track with the Rites, and the big walk with Dex. I am going to try to do the ramps of death at least 3x week, and am thinking about joining the Gym in town. I feel so much better after I have done some exercise, so I want to at least give it a shot. I used to be a gym junkie, but he RA put an end to that. It is just so easy to sit on the couch or potter in the garden.


    Take it easy everyone...M x

  • wirdgirl118
    wirdgirl118 Member Posts: 139
    edited October 2013


    Hi Moira! a gym in our area has a warm water pool and in their regular pool they have exercise biked and treadmills in, yes in, the pool, to keep exercise low impact and friendly to joints. I am going to join. I don't feel self conscious there about being slow and watching where I walk, the neuron tin makes me a bit tippy.

  • Ariom
    Ariom Member Posts: 4,027
    edited October 2013


    Oh Wirdgirl, you've given me a laugh this morning. I love it that you took 7 suitcases on a 5 day cruise! I did a 31 night cruise on 1 suitcase for both of us and a trolley bag! It was a "precision pack" like no other.


    Shopping with the drain was an experience because I had the bag inside my shirt with the drain coming out of a tank top. I was a bit self conscious, but I had a broken toe at the time from running for the phone while packing my bag for the Motel and the Hospital. I collected a door on the way and had the most painful toe and foot, so I wanted some new flip flops to wear while I had it strapped up. I was walking like Quasimoto anyway from the foot and the Mx, so it couldn't get much worse. Colin just laughed at me, but wasn't surprised that I wanted to shop! The upshot of this story was that the damn phone call that started it all was a call center in India scam. Did that guy get an expletive blast from me!

  • wirdgirl118
    wirdgirl118 Member Posts: 139
    edited October 2013


    oh dear! I really dislike phones.

  • grammaB
    grammaB Member Posts: 1,118
    edited October 2013


    bobo, pack light. I wore yoga pants and a button up shirt in and the same pants (w/clean undies) and a Jacki jacket home that had pockets for my drains. I took cough drops which I never used because I apparently didn't have the tube all the way down my throat. And I didn't have a catheter so no need for "diapers" . I took tooth brush, tooth paste and the above mentioned clean undies. I wore slide in sandals on my feet, but it was August for me. I too got my hair cut really short, a short pixie, so keeping it clean was really easy. I went home bound in an ace bandage that I had to wear constantly for 2 weeks. Only time it came off was once a day for a shower, starting at day 3 post. If you are going to be bound, it might make it easier to have bobo around as everything is covered by the ace.


    I vote for not telling anyone until well after. As Moira said, you just don't need the stress/drama/aggravation. Try not to worry, yeah right, (been there, tried that , doesn't work) you are going to do great. I'd say it is all about you for now. Don't do anything you don't want to do. Don't share info with anyone you don't want to.


    My heart breaks for all you have experienced. I can't imagine losing one child let alone 8. (((Hugs)))

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited October 2013


    I vote for not telling mom till over and done. But then she will try to guilt you, "oh my poor baby, I would have taken care of you, blah blah".


    You should only be gone over nite. Who will be taking care of the kids? Can they take care of him too? Unless he's a jumper, you both would miss each other too much to kennel him. Added expense too. Mine were fine, nobody jumped me, although Spookie can jump high enough to bite my butt.


    Oh, try to come home in a high vehicle. I had a Saturn, was just way too low to try to pull myself up to stand. Ouch! DH pick up worked much better.

  • wren44
    wren44 Member Posts: 7,932
    edited October 2013


    I can barely remember, but I think I wore knit pants and a zip jacket in and the same thing out, with clean undies. I was able to drag everything into the bathroom to use the toilet, no catheter. It was about 8:30pm when I got out of recovery and was moved upstairs to extended observation overnight. Best part was when DD came the next morning with a latte in hand. I went home about 10am. Just don't forget the pillow for the seat belt.

  • grammaB
    grammaB Member Posts: 1,118
    edited October 2013


    Zils, I hope you can adjust to the hormones soon and also can get some rest. Do not be ashamed if some things don't get done, ever! Do what you can and leave the rest for later or for someone else to do.


    gramwe, I am so sorry that OG's surgery is going to be so complicated. I never imagined how far into the hand they would have to go to amputate a finger. I hope for the best for him. A honeydew melon, baby is getting big! How exciting!


    My parents had 2 male children also that I have absolutely nothing in common with. Both are bums and have criminal records. I haven't seen or spoken to either of them since 1988. So I can totally understand how you feel.


    wirdgirl188, exercise bikes in the pool!? That would totally work for me with all my back issues. They must be some special bike that can stand the water and not pollute it.