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  • Ulla
    Ulla Member Posts: 840
    edited February 2008

    dear sue,,did they doubled ur cortizone doze??howmuch u r taking ??

    u r so beautifull..talking about being fat come and look at me...

    plz honey ..i know we will do it togeather so dont leave me alone here

    dear sue...i am bald ..without eyebrows or lashes at alll..my face is so fat as my body tooo...

    my eyes filled with puss..red and so swollowed..

    and i must keep going daily to take this stupid rads in another city 90 min away from me,,,i must wake up in the early mornning to catch the buss there..

    honey there is always hard things to deal with ,,but we always mange to get over them ..as long as we have each others love..

    honey..plz get inside ,,i dont want u to catch cold or flu..

    i have those nasty hot flashes too that i cant have good sleep at night...

    ut i am still here with u and for u i can keep awake till u feel better..

    sunnee how nice to c u posting here honey...i love u...

    lisa sheilla..i love u sisters

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  • sueps
    sueps Member Posts: 2,266
    edited February 2008

    I am never ever ever ever eve ever ever ever ever ever ever ever ever ever going to feel better...

    Well I went out side...bared all the scar to the moon as my head shone in the light... and it started to rain ... so I am back... I am sure they messed with the steroid dose this time.. I had 2 bottles one for one treatment each ..for the 2 weeks ...one saud 4 twice daily the other I use us twice daily for four days...both different dosages...maybe its that...

    Ulla I do not know why Beth is leaving... I was very sad to read that she was.... xxx

    Ulla ...do you feel much better now you are off chemo.... I am looking for a little light...I need a carrot to a donkey feeling... I have 6 lots to go ... OMG it is the hardest thing ever..soooooooooo freaking long... so freaking ill.... so sad so angry so everything...

    I keep questioning lately whether I would do it all again

    Shirlann ...I just showed David your Cleo...he said oh my god she is Zippys sister!!! xxx

    I am sorry I am all messed up tonight... I am raging inside xxx

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    Never mind, Sue. Raging helps. You're taking in drugs that kill cells: of course they make one rage.



    Last night was a lunar eclipse: who knows maybe it was a good idea to bare your scar and head. No reason to think it may not heal during special crossings of stars and moon.



    Hang tight, Sue.

    Tender

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  • my3girls
    my3girls Member Posts: 3,766
    edited February 2008

    Sue..don't appologize.  I felt like you did. Questioned if I wanted to go on with treatments. I'ts ok...it's expected.  You will get past this.  In about 2 or so days, you will feel much better. You can do this. 

    Ulla, all I know about the Beth situation, is that someone, who had hardly ever posted here, posted something very mean and nasty on the reconstruction site.  She called her a braggart, etc...I did not read it, but that is what I have heard from those who did.  It was very nasty.  I stay away from sites when they get ugly...who needs that crap.  I pm'd Beth, and told her how I felt.  I am sorry she has left, but I do understand.  She will be back.  She is a young girl with so much going for her, and has been through so much. She was very helpful to so many.

    I am going to rest a bit. I had so much to eat tonight!! It was the first time I had such an appetite!  I made steak, with carmelized onions, baked sweet potatoe with butter and cinnamon and fresh asparagus with a balsamic vinegar sauce drizzled on top!! Yummy...Olivia and I loved it!

    Take Care everyone.  Sue...thank you for lighting that candle!! I love you!!!  That really warmed my heart!! I feel so bad for my girlfriend, It brings back all of my memories of when my Mom was dying.  Very sad.

    xoxo

    Lisa

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  • sueps
    sueps Member Posts: 2,266
    edited February 2008

    Tender  xxx

    What a romantic thought...I feel all calm again..envisaging the moon passing over my battle with healing rays xxx

    You do have such wonderful ways xxx

    Thankyou xxx

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  • sueps
    sueps Member Posts: 2,266
    edited February 2008

    (((Lisa)))

    Have a lovely rest...you are doing so well with all these emotional and physical trials of late....and now look...driving and cooking delish meals.... you made my mouth water !!! At the moment I am eating oranges cut into small pieces with sugar on them... they seem to diffuse my mouth xxx

    I am going toi read for a min ...I hope I feel better tomorrow xxx

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  • Ulla
    Ulla Member Posts: 840
    edited February 2008

    dear sue..

    the change in our steroid dose mess us really...it is normal to feel like u do..dont applogize plz,,

    and yes i feel really better after the chemo ends..but i couldnt enjoy it so long as it was only 10 days of really feeling good and normal and being able to go to the gym again and then my eyes infection and the rads started ..i dont feel good with the rads ,,but they r really easier than the chemo ,,i felt so bad in the first 2 days ,,i even crashed in there ,,burst into tears,,cried and felt so sore and much pain but i really feel better today..

    i know that it is difficuikt for u to c the light at the end of the tunnel now,,but dont u trust me sister???i am here with u,,and i feel better like u will feel wen u finish all that..

    trust me honey,,it will ends and u know that i was in the same dark place that u r in now for so many times and u helped me with our sisters here to feel better ,,,do u remember that..

    oh god ,,these hot flashes r killing me reallyyyyyyyyyyy

    i am here on my bed with NO CLOTHS AT ALLLLL

    THANK GOD DH IS NOT HOME TONIGHT,,,,,

    LOL

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  • sueps
    sueps Member Posts: 2,266
    edited February 2008

    lol Ulla ..... thank god he isnt hahaha   xxxx you make me laugh...I am so hot too xxx

    I worry so much that bootface will come back xxx

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  • Ulla
    Ulla Member Posts: 840
    edited February 2008

    DEAR SUE..

    I NEVER FELT AFARID OF SOMETHING LIKE I FEEL SO SO AFRAID OF THIS NASTY BOOTFACE VISIT ME AGAIN..

    I RETHANK GOD THAT DH NOT HOME...I FEEL BETTER THESE DAYS WEN I AM IN MY HOT FLASHES AND TAKE OFF EVERYTHING AWAY...BUT HE CANT STOP MISS UNDERSTAND THIS MOVEMENT..ANY SUGGESTIONS LADIES TO HELP ME EXPLAIN THIS TO HIM???

    LOVE U SUE..

    I AM TRYING TO STOP MYSELF OF CALLING THE NASTY BOOTFACE TO VISIT ME AGAIN...I MEAN THAT THINKING SO MUCH ABOUT SOMETHING AND BEING SO AFRAID OF IT CAN MAKE IT HAPPEN TO US..SO DEAR SWEETY..TRY TO DO LIKE ME..LIVE UR DAYS ...WHO KNOWS WAT WILL HAPPEN TOMORROW..WE MIGHT BE DEAD FOR A CAR ACCEDENT OR ANYTHING ELSE WHY WE KEEP WORRYING ABOUT IT,,IT JUST DONT DESERVE TO TAKE MORE OF OUR THOUGHTS.MINDS.HEALTH AND PRECIOUSE TIME...

    OFF FOR A CUPPA.....

    LOVE U MUCH MORE THAN U CAN IMAGINE

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  • sueps
    sueps Member Posts: 2,266
    edited February 2008

    "IT JUST DONT DESERVE TO TAKE MORE OF OUR THOUGHTS.MINDS.HEALTH AND PRECIOUSE TIME..."

    Thankyou for your above advice Ulla you are so right...thankyou for being so patient with me while I am in chemocasiland xxx

    enjoy your cuppa xxx

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  • Ulla
    Ulla Member Posts: 840
    edited February 2008

    dear sweety sue..

    plz i am here with u and for u till u finish this trip..

    u know wat..i keep comming here daily so many times..

    when i feel u r good i may not post and it is enough for me to read all the posts..but once i feel u r feling sad ,,down or tired...i feel that all my heart and mind ,,thoughts..cant do anything but being with u tilll u feel better

    love u sister

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  • sueps
    sueps Member Posts: 2,266
    edited February 2008

    Thankyou so much Ulla xxx you are a wonderful sister... xxx

    IT HELPS ME TO KNOW YOU WILL BE BY MY SIDE THROUGHT ALL OF THIS... I  LOVE YOU AND I AM ETERNALLY GRATEFULL..... XXX

    You will never know how much our sistership means to me xxx

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  • Ulla
    Ulla Member Posts: 840
    edited February 2008

    plz sue..dont talk like that..u r so lovely..i love to be with u so much..

    so wen u dont see me posting ,,be sure that i were reading but didnt feeel that u need me..once i feel u need me ,,i am here 4 u

    how do u feel now??\

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  • Shirlann
    Shirlann Member Posts: 3,302
    edited February 2008

    Hey little sweet Sue, you rant and rave all you want.  This is a horrible nasty disease and you need to get all that anger and resentment out of you.  It will help you get better faster.  This is an ugly, long and miserable trip and I am so sorry you have to take it.

    But it is getting shorter.  Just remember, when you started, how far you had to go.  And now, it is much shorter.  And honey, you will be beautiful like you were, you really will. 

    Ulla, have you tried Effexor?  It is an anti-depressive that they found out helps amazingly with the hot flashes?  Might be worth a try.  Another woman on our site mentioned she was on another anti-dep and could she take both.  I don't know but I doubt it.  She will need to slllowly get off the one she is on and sloowly start the other one.  These pills are not addictive, but they do not like to be stopped abruptly.

    Now Sue, darlin', you are not going to die.  You are going to live a long, long life.  You will bounce your grandbabies on your knee.  Your boys will have you for many, many years.  All your tests and things are really very good and you should not be bothered by this beast again.  I understand this is hard to believe and hard to believe you will ever feel better, but you will.  And the memories will slowly fade. 

    So hang in there all my sweeties.  Hugs and kisses to you all, Shirlann 

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  • portiasproudmom
    portiasproudmom Member Posts: 2,125
    edited February 2008

    Hi Sue.  Hi Ulla.  I'm very angry at bootface for making you lovely ladies so sad and afraid.  I'm angry because it's taken the lives of so many wonderful ladies.  Grrrrrrr!!!  Die bootface! DIE!!!!!!!!!!!!!!!!!

    Don't mind me--I've been cooped up in the house all day, recovering from my surgery, and I'm loopy.

    Really, ladies--we're all going to be fine.  If we keep the faith and think positive, healing thoughts, I know we're going to be okay.

    Love you all,

    Karen

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  • portiasproudmom
    portiasproudmom Member Posts: 2,125
    edited February 2008

    Oh, Shirlann.  You always know exactly what to say.  What a dear, sweet lady you are!  Love you!!!

    Ulla, Shirlann is right about the Effexor.  I was on Lexapro, but my onc switched me to Effexor to help ease my hot flashes.  She slowly weaned me off the Lexapro and onto the Effexor.  It has virtually eliminated my hot flashes.  It's great stuff!  You should ask about it.

    Hugs,

    Karen

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  • sueps
    sueps Member Posts: 2,266
    edited February 2008

    Hi Karen xxx

    I am so glad you are recovering from surgery...xxxx 

    YES!!!   BURN BURN BURN THE BOOTFACE!!!!! OFF WITH ITS UGLY BOILED BACKSIDE!!!! NO PLACE AND NOR RIGHTS TO OUR BODIES !!! GET LOST WE ALL HATE YOU ....AND YOU WILL DIE EVENTUALLY ...ONLY A MATTER OF TIME ..THEY WILL FIND A CURE ..YOU SILLY SON OF A BOOTFACE!!!

    I am going to bed in a min...I have work tmw...but I expect I will be awake at 4am.... I WANT NORMALITY BACK..I WANT ME BACK AND I WANT MY LIFE BACK...

    Thankyou for being here with me.. I am sorry xxx

    AE and Ub .... You are in my thoughts as I close my eyes in a min... You are very dear to me .... xxxx

    I love you all xxx

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  • portiasproudmom
    portiasproudmom Member Posts: 2,125
    edited February 2008

    Nighty night, Sue.  Rest peacefully (and hopefully past 4am), my dear sister.  Love you to bits!!!!!!!!

    Hugs,

    Karen

    PS  Quit apologizing you silly woman!!!!  It's good to vent and get it all off your chest. 

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  • honeygirl
    honeygirl Member Posts: 1,718
    edited February 2008

    Sue , rest peacefully honey. May God calm your fears. We are all here for you. We are all in this together. We will hold you up and carry you through this difulcult moment. I love you. Heres some snow to wake you from this dark place.xxxx

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  • livesstrong
    livesstrong Member Posts: 1,799
    edited February 2008

    Hello ladies,

    I have some good news!!!  UB may be home as early as tomorrow!!  His tube is out and they have officially startd chemo.  It is still a B cell NHL which is a very good thing.  T cell would have meant luekemia.  He is having the same treatment as last time minus the red devil!!!  And its once every 3 weeks at the onky office - not in the hospital.  We are both very relieved.

    Sweet Sue - so sorry you are having a tough time.  Would it help if UB took your hand and you travelled the yellow brick road together???

    I'm beat so I'm signing off, but know that I think about you ALL EVERYDAY and know you will always be in my heart.

    AE 

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  • my3girls
    my3girls Member Posts: 3,766
    edited February 2008

    Just a quick hello to Mel!!! I miss you!  Thanks for the great picture and snow!  I am having trouble logging on to my photo bucket.  Something about enabling cookies?? I think ever since we had computer problems. I will have Miss Olivia take a look at it.

    How are you doing tonight Mel? Are your heart palps any better?  Is Lilly at your keyboard?

    Thanks for lighting those candles....Kim will be so greatful when she see's all of the love.  This is so hard for her. Her mom has been her everything.  Her dad passed away when she was very little.  Her mom has lived a good life..she is 87...but it is still very tough. It is bringin back all of those thoughts and feelings of when my mom passed 4 yrs ago so quickly.

    Talk to all of you tomorrow.

    xoxo...to the best sisters in the world!

    Lisa

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  • honeygirl
    honeygirl Member Posts: 1,718
    edited February 2008

    Mia , ((((((((Mia)))))))))) Hugs to you sweet sister. I am praying for you girl. Try to have a good time on your trip. Try not to think of the what ifs. When you get back , we will all be here waiting to hear from you.xxxx

    Karen , so glad you are home and recouping. Aww , loopy is fun sometimes!lol Take care.xxxx

    Shirlann , thanks for sharing that adorable pic of Cleo. I'm glad to hear her and Dusty are getting along well. Its never a dull moment with my Lilly. She is still rolling poop balls around the house and has to play in the water when we brush our teeth or wash our face! She does keep us laughing. Hope Walt is feeling better.xxxx

    Ulla , Just keep using the eye ointment. I used to get those. Very painful. And by the way , I would take looking like you with styes in both my eyes! Love you honey.xxxx

    Hi Lisa , gb , Valsul , Karyll , Dawn , Lucy , Suneedazee , and all my sisters. Love you all.xxxxx

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  • honeygirl
    honeygirl Member Posts: 1,718
    edited February 2008

    Oh Auntie Em!!! Great news about UB! God is good. You rest honey. We are all with you and UB and we will all help in the fight of the ugly bootface , back to the road to recovery and NED. Love you both.xxxx

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  • honeygirl
    honeygirl Member Posts: 1,718
    edited February 2008

    Hi Lisa xxx , Yes , my palps are better. They stopped about two days ago. I have no idea why. Just like I have no idea why they started.

    Lilly is sleeping right now. She has to get rested for her night of rolling poop balls acrossed the floor! Sounds like marbles rolling in the night.lol She is sooo full of it. Hows darling Oliver doing? He looked so handsome after his grooming.

    Are you feeling better? Its good that you can drive again. But take it easy. Rest as much as you can.

    My son and I are going to Tennessee to see my mom and my sister and her family. I am so excited. I haven't been there for four years , and really miss them all. Especially after last year , it will be good to be with family again. And get a big hug from my momma. She is 81. God bless her , I miss her so.

    I am sorry to hear of your friend Kim's mom. It is such a difficult time. My dad died in a nursing home. He was sick for a year before he died. If it is sudden , or a long journey , I don't think you are ever prepared. A parents death is so hard. We know it  will happen someday , but it doesn't make it any easier. My prayers to her and her family.xxxx

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  • my3girls
    my3girls Member Posts: 3,766
    edited February 2008

    Mel, glad to hear the palps are better.  It seems that things come and go on this tamox?  I know I have that with the pain in my legs and arms. Some days it's not bad at all, and others...very painful.

    Oliver is doing well.  He is curled up on top of a pillow right next to me. He is such a little sweetie.  So easy, so cute!

    I am feeling better. I still have the slight nauseau at times, and that "dizzy" head feeling. I am getting lots of rest...except at night.  I seem to wake up every night, and can't fall back to sleep for hours!

    I am so happy you are going to see your family!! I bet that will be a nice reunion! Hugs from Mothers's are the best...like no other!  When are you going Mel?

    Karen, I hope you are feeling even stronger today.  What is your weather like up there?

    AE...so happy that UB is coming home and doing better!  An answer to prayer!

    Well, I am off, to take my car in for some work. Pray that it is very little work..nothing expensive.  Since I don't get paid for this time off...I certainly can't afford it!! Yikes!!

    Love to all that I did not mention!

    xoxo

    Lisa

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  • portiasproudmom
    portiasproudmom Member Posts: 2,125
    edited February 2008

    What great news, AE!!  I'm so happy for you and UB!  Take a deep breath, relax, and enjoy your weekend!

    Mel, it's good to see you!  I'm so glad that the heart palpitations have stopped.  I know how scary they are.  Your story about Lilly swatting her poop across the floor made me giggle.  Take care and have a wonderful weekend, dear sister!

    Lisa, I hope the repairs on your car are minor and inexpensive.  I've been very lucky (knock on wood) with my current car.  I've had it in for repairs only twice in the eight years that we've owned it.  I haven't been so fortunate in the past.  I'll keep my fingers crossed for you!  I'll continue to pray for your friend Kim and her mom.  What a difficult time she must be having!

    Love to everyone.  I'll be back later.

    Love and hugs,

    Karen

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  • sueps
    sueps Member Posts: 2,266
    edited February 2008

    Hello Sweet Sisters xxx

    HELPPPPPPPPPPPPPPPPPPPPPP  ...I am soooooooooo sooooooooo poorly Cry  my mouth is full to the brim with blisters Surprised  what is going on in my body.... yesterday I felt like I had a mouth full of syrup all day...rotting my teeth and today I have yellow blisters raw and raging ...and I am so freaking defenceless ....THIS CMF IS FAR WORSE THAN THE RED DEVIL!!! 

    Please anyone any tips ...what is wrong with the mouth on me .... I am RAGING RAGING RAGING RAGING RUNDOWN IN MY HEAD....CAN YOU HEAR ME SCREAMING.... I AM LOSING MY CASE !!!!

    god only knows how I got thru work....the worse I hurt the harder I work ..trying to run from the freaking pain....

    Ae ask Ub will he give me a piggy back for a few miles over some yellow bricks PURLEAAAAAAAAAASEEEE !!!!! I AM DESPAIRING xxx

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  • sueps
    sueps Member Posts: 2,266
    edited February 2008

    OK Mel ...hahahahahaha I laugh so much about your Lil  lol.... she must keep you so comforted  .... I am so happy you are palp free.... sometimes there is just no significant reason for them .... they are very scarey though ... and I cant wait for you to meet up with your mum .... that is just great to look forward to ...... just the break you need ....xxxx  thankyou so much for posting Dorothy ...its a lovely thought to be travelling along this here brick road with everyone xxx

    Ae and Ub ... I am so relieved for the "positive" news.... what a relief ...such a relief....even though its so damn frigging hard...I was thinking about you on the way to work as I drove along....admiring how strong your relationship is ...and finding great comfort from the thought that you are out there !!!!  I cant explain this...please keep kicking my booty...and UB ...kick his booty too .... xxx  lol

    Lisa.... hope ya get ya car fixed... taking cars to garages is way too stressful for me....the unknown expense... I stress every year for the mot...thining it will cost thousands...dont ask why....maybe its a womans thing.... and when I pick it up its generally just a few quids work..like a light bulb or something xxxx .... I am so glad you are feeling better as the days go by...I have been thinking how outstanding your recovery has been so far !!!  Its not long since Olivia was posting for you...I hope she is enjoying her new job xxxx

    Karen....I love you soooo much...healing thoughts healing thoughts... please send me healing thoughts... I woke at 4 30 am after getting to sleep at 1 am.... I HATE IT .... I JUST WANT TO SWITCH OFF AND WAKE UP HEALTHY... XXX

    Please can anyone tell me ...do you actually go back to sleeping nicely etc after this freaking stuff is over....you know I long for to go to bed without pain and worry and wake up refreshed and happy....will I ever be like that again...it worries me so much .... I am so exhausted with the journey....Cry 

    I am SICK OF YOU BOOTFACE ...YOU ARE WINNING RIGHT NOW !!!

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  • sueps
    sueps Member Posts: 2,266
    edited February 2008

    MY BODY CANT TAKE ANYMORE

    I think Zippy is picking up on me...he has been pulling...well pulling more like ripping his fur out ..he is so bald!!! and to top it all he has stress cystitis ...again ....and I stress and I worry...so I go to the vets on the way home and buy him  some special urinary food which cost 50 quid  a bag... my good god... and having 3 cats ...how long will that last...still its better he gets over the stress...please send Zippy some healing thoughts...he is a bag of bones lately...since I decided to deflea him last week ... he has done nothing but scream at me xxx

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  • erika-canada
    erika-canada Member Posts: 142
    edited February 2008

    Hi:

    I believe your blisters are THRUSH, I got it after every chemo. Especially, bad after Taxotere...felt like I had a toothache in every tooth, gums were so swollen. Fluconozole (anti-biotic) helped and also Koolstat (a Cortisone rinse and gargle). I sympathize with you, as I've been there. But guess what? You'll be just fine, Bootface will not be winning; as we won't let him!!!! Be Strong Wink

    Hugs and well wishes,

    Erika

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