Starting chemo Sept 05

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  • marg1
    marg1 Member Posts: 73
    edited June 2006
    Just popping in to check on Leanne. Marg

    Hope all is good!! I have a joke.

    What is the difference between an oral and a rectal thermometer?

    THE TASTE!!!!!!!!!!!!!!
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  • marg1
    marg1 Member Posts: 73
    edited June 2006

    Hi everyone, I found a recent post from Leanne on the mets boards. She is in hosp for an infected port and is expected to stay in for a few days. She is missing her boys as you can imagine. -- I pm'd her and told her we miss her. Marg

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  • leannem
    leannem Member Posts: 137
    edited June 2006
    Hello my lovely sept sisters

    Firstly a HUGE thanks to Marg for PMing me and asking me to "come home" to my sept sisters. Indeed this is where I am not judged and know I can rant and rave, swear and cry as WELL as the good stuff without crap being started because of it. HUGE mistake doing most of my general posting on the mets boards. Basically i did this as I thought it would cover all bases- my 'friends' from the mets boards could keep up and my sisters who lurk (and I know you do would also see me.) From the most recent fall out I won't be doing that again!

    SandyinAust is my contact- if I go missing she should know where I am and to all my loving sisters my email address at home is leannemyles@hotmail.com if you ever want/need it.

    Off topic but I have often thought we should perhaps swap details incase one of us "disappears" for a while. Unfortunately we all know the terror when we don't hear from one of our sisters in a while and was thinking this might be helpful? Now my details are out there, I am happy if anyone wants to do this, to email me any details you are happy to share and I can create a list? From there we can decide if I am to keep it underwraps if anyone is worried about sharing details and only use it in an emergency or I can then email the list to 'us'. Thoughts?

    Anyway....and please excuse my ramblings.....still in hospital and abit all over the place!

    Yes i am in here with an infected port. Day after chemo was op, left hospital 7pm friday night and was back by 10am. Very very sick. (Probably have read on the mets boards so won't bore you with my sickness details!!) Apparently I was very lucky to get here when I did???!!! Admitted immediately and have been on continuous antibiotics since. However they have got me from having 3 different kinds down to 1, my neutrophils are up from 0.01 to 18 thanks to a gcsf injection (kinda like neulasta but a bit more heavy duty). Now we are just waiting to see what my levels plateau out at. Hopefully if they are okay I will be able to go home tomorrow!!!!! I am missing my boys terribly. Toben is crying alot and last night was especially bad, wouldn't settle, crying out "mummy why won't you come home to me". Just heartbreaking.

    I got to see them today though!! A lovely social worker here in conjunction with a couple of nurses and drs organised to let me use a meeting room faaaaaar away from the patients. (At this hospital children under 12 are not allowed on the ward during winter months- no flowers allowed any time) It was lovely. I was a bit concerned as Riley had a runny nose and a bit of a cough which if they knew of would never have alllowed the meeting to take place! So lovely to see them. Cried when they left as they did. Praying for discharge tomorrow though.

    Scott....well I am thinking I will leave all that alone at the moment. Just really want to get out of here, get better and deal with it later.

    That is me.

    Love to you all and I will keep checking in here now as I have arranged my laptop and internet access. Hooray!

    xoxoxoxoxo
    ps. anyone know how to change my avatar??
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited June 2006
    Leanne,

    I second the thanks to Marg! I am so happy that you got to see your boys yesterday! This may be harder for them that it is for you, but maybe that is a toss up. Even though they are young, they must be aware that you aren't well, so to have you disappear must be traumatic for them. I hope that your counts get wherever they need to go so that you can go home once again.

    Mothers, partners, etc. You know, human relationships are just plain messy! As I said over on the Mets board, I just want for you whatever you decide you want for you. Isn't that simple?

    If we want to start a list I am all for it, but, I don't think you should take on that burden. You are still fighting, you have young children.... let one of us older women [I never thought 47 was OLD!!!!!] take this project on. I could even write a little database and give it to all of you... or create a neat little text file that you could import into your existing address books. Happy to do either. What I like about that is that the list wouldn't disappear if the 'holder' moved on.

    Today Boston is beautiful! Perfect weather with sun, a light ocean breeze and lower humidity. These are the days we tolerate the long winter for.

    Leanne, thank you so much for the update. We are all rooting for you in a big way.

    *susan*
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  • Pegk
    Pegk Member Posts: 389
    edited June 2006
    I'm so happy to hear from you, but sorry to hear you're dealing with an infection. I hope you'll be home with your boys soon.

    Liezel, Congratulations on finishing rads! I'm sorry you have to deal with a tragedy at the same time.

    A database for our group is a great idea. If you could take that on, Susan, that would be great. And, no, you're NOT old, just older than some, but also younger than some (like me!) Let me know what kind of info you need.

    The weather in NY is similar to Boston. We spent the day on the banks of the Hudson River at the Clearwater Music Festival. What a beautiful day!

    Peggy
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  • leannem
    leannem Member Posts: 137
    edited June 2006
    Well everyone I am out at last!

    Despite the original prediction of me needing another 7-10 days my counts have been behaving and I was discharged this afternoon. Straight back into reality with the puppy peeing on the carpet and the kids misbehaving! Great to be home though.

    Susan if you are okay to do the database that is great although I am still happy to do it. Perhaps PM us your email address and we can give you our details? Whatever suits.

    Gotta go, Toben is driving me up the wall not going to bed so must deal with that. Ahh, home!

    xo
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited June 2006
    Argh. Site ate my last attempt at posting, so I will try again. [If BC can't beat me, this site certainly can't.]

    Leanne, welcome home! And it sounds as though it still a whirlwind of activity. Peeing on the carpet though. Is there someone else who can clean up? We worry about your counts after all. Enjoy the normalcy of having your boys around you again.

    Peg, how about this? I design databases for a living and can build something that requires no additional software. Why don't I do that, and you take care of collecting the data? It seems to me that you have a list of all the September Sisters, and I will create a small dbase to store the info?

    Let me know.

    *susan*
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  • Pegk
    Pegk Member Posts: 389
    edited June 2006
    Take it easy, Leanne!
    Enjoy those little boys. I'm sure they're thrilled to see you home, but I hope you have a support team to take them off your hands when they get to be too much.
    They need you rested!

    Okay Susan, I'll collect any info that anybody wants to share.
    Home address, Email address, birthday, family info
    ( I actually have a card file from the 1st 2 months that I used to keep everybody straight)
    Anybody want to be included, you can PM me or email me:
    pegknyc@aol.com
    (I don't log on as much now that I'm back at work)

    I'll get the info to Susan.
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  • Liezel
    Liezel Member Posts: 192
    edited June 2006
    Leanne, glad to hear you are back home! I agree with Susan on the Scott issue. You go with what feel right and good for you at the moment. We'll support you and hope that it works out the way you want it to. I actually did a PM for you after seeing the responses on the Mets board, but it got lost before I could post it. You just hang in there....

    I think the idea of a Database is a great one!! Peg, I'll email my details to you. Thanks for the offer Susan. I am really electronically challenged.....

    The weather in Cape Town is lovely for a change. Temp went up to 26 yesterday! But, it is winter, so it will probably change again in the next few days...

    Enjoy your lovely summers. Leanne, from what I can remember, Brisbane's winter is not too bad is it? Good luck any way...

    Liezel
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  • sholroyd
    sholroyd Member Posts: 288
    edited June 2006
    Liezel, I was so sorry to read your posting, my thoughts are with your friend and her family and also with you and yours. It is good you have finished with rads Liezel.

    Leanne – WELCOME BACK – be a good girl and don’t try to do everything.

    I want to tell you about my weekend (what not to wear). I am glad I went to London - shattered now though. It was very well organised and it was good to be with other ladies who have gone through similar and worse than me. I met a lady who is only 28 now and had her op about same time as me. I am certain I won't be one of the chosen although I do believe the ones not chosen will be 'extras' - I think the BBC had their criteria sorted before we got there as they had been to some of the participant’s home and these ladies were singled out to speak to Lisa (Butcher) or Meesha (Paris) at the pretend party – not a problem as I really enjoyed the experience and meeting some fantastic ladies.

    We went to this big (massive in fact) house and had to all walk in to be welcomed to a 'pretend' party held by Lisa and Meesha - lots of retakes so we were tired and ready to finish when we went back for lunch at about 3.00 pm! Trains were good and the hotel was good - travel, hotel and evening meal all courtesy of the BBC.

    I will try and post a piccie of Meesha and yours truly.

    Barb are you back from the UK?

    England are playing Sweden tomorrow evening – I will be in front of the box.

    Sandra from the UK.
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  • sholroyd
    sholroyd Member Posts: 288
    edited June 2006
    image
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  • Liezel
    Liezel Member Posts: 192
    edited June 2006
    Lovely pic Sandra. Even if you do not get chosen, it is the experience that counts. Thank you for your wishes. It is a long time ago, but I do still miss her and really did not want my friend to go through this...

    Good luck for tonight!!
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  • linny
    linny Member Posts: 204
    edited June 2006
    Peggy, thank you for the lovely post. I am also at one year anniversary and had my first mammogram yesterday - it made me sick just walking in the door of the hospital.
    Susan, glad to hear you are back at work.

    Linda
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  • txred9876
    txred9876 Member Posts: 392
    edited June 2006
    I was sooooooo glad to see the posts from you Leanne! You will get though this....your a strong woman...stronger then you may even think you are! Sending you positive waves.....

    Just peeking in ....then back to the house stuff! I finally have a kitchen again....only one more upper cabinet to go! Dishwasher (omg have I missed a sink...let alone a dishwasher...LOL) and vent hood got hooked up last night. Countertops got done last weekend.

    My parents will arive in a few days. They are driving from Oregon to TX.

    I hope everyone has a great week!

    Tina
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  • tinkermax
    tinkermax Member Posts: 269
    edited June 2006
    Hi everyone

    sorry its taken me a while to post again...

    Results from x-ray and ultrasound came back ALL CLEAR!!..woohoo

    I too have just had my one year anniversary...10th june...and i felt strange all day....i didnt quite know what to feel..

    I think its a great idea about having contact addys for everyone too.

    I hope all you lovely ladies are having a good day.

    Hugs

    Maxine
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited June 2006
    Today my surgeon said it out loud, after reviewing my one year annivesary mammogram: "CANCER FREE!!!!!!!" Everyone at the hospital was beaming today, the radiologist when she told me she couldn't find a thing to look at, the nurses up in the breast care center, and especially my wonderful surgeon.

    She told me to go celebrate "big time" and said my expected dinner of grilled tuna wasn't good enough. She mentioned 'chocolate' actually.

    A good day. These two words make me might happy: cancer free.

    *susan*
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited June 2006
    Liezel, love the new avitar! Enjoy those last warm moments before winter hits.

    Sandra, what an adventure this "what not to wear" was. Filming, trains, lunches. I agree. It does sound as though they may have already selected the actual participants though, which seems a little unfair. To ask women who haven't been well to travel when it has all been decided. Yet, a free trip to London doesn't sound all bad!

    Maxine and Lynny!!! Yea!!!!! I am having a glass of wine to celebrate my news tonight, and one sip has your name on it. we made it!

    Tina, a kitchen with running water. What a luxury. how much longer before your Taxol's are done?

    All for now... I have a nice glass of wine waiting for me.

    *susan*
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  • txred9876
    txred9876 Member Posts: 392
    edited June 2006
    My taxol officially ended on June 7th. I am scheduled in early July for my CT scan but I am going to have to change it as I am taking a 2 day "vacation" to the coast to go fishing with my dad and other half (MOM and my daugter are going...but not out on the fishing charter).My Parents are in Provo, UT tonight headed for the Grand Canyon tomorrow. They are then headed to TEXAS! They have not seen me thought this whole oredeal and we are all anxious to have a wonderful time while they are here.

    I started on Tamoxofen and have had a headache the last couple days. I sure hope its not related. my email for anyone who wants to write is txred9876@yahoo.com.

    Well its been a long day...for some reason its rough trying to "part time" real estate....LOL

    Tina
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  • Paula15089
    Paula15089 Member Posts: 373
    edited June 2006
    Hi girls...
    i am a 'resident' of Oct'05 thread, but dropped in just to ask if anyone heard anything from Michelle (AussieMum)
    Her last post was about a month ago and she hasnt replied to my last pm, in fact i didnt even get a read receipt.
    Was wondering if anyone heard from her.
    take care all!
    Paula
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  • tinkermax
    tinkermax Member Posts: 269
    edited June 2006
    Hi Paula

    I havent seen any posts from michelle (aussiemum)for a while either, I hope she is okay.

    Does anyone here have her email addy?

    Tink
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  • txred9876
    txred9876 Member Posts: 392
    edited June 2006
    http://ww3.komotv.com/global/video/popup/pop_player.asp?ClipID1=785456

    Here is a great news segment....

    pass it along to anyone it is good for any BC and IBC.

    Tina
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  • tinkermax
    tinkermax Member Posts: 269
    edited June 2006
    Tina

    Thanks very much for the above video.....very informative..

    Tink
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  • leannem
    leannem Member Posts: 137
    edited June 2006
    Hi everyone!

    Just a quick one tonight to say hello to you all!

    Had chemo today after my week "off" in the hospital. Felt a bit down as I thought I was further along in my regime than what I am. Originally my onc said 4 more rounds of this new chemo but somewhere along the line it got changed to 6 without me knowing!!!! Not happy.Really drags it out and now don't look like completing until August. (My 1yr dx anniversary).

    Nothing new to report and hopefully this cycle it stays that way! I am still having problems with my port- I have a "knot" in it where the surgeon thinks that perhaps one of the securing stitches has worked its way to the front of the port and is rubbing against my skin. OUCH. It feels like a million electric shocks all day and night.

    Chat soon
    xoxoxox
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  • sholroyd
    sholroyd Member Posts: 288
    edited June 2006
    Hi Maxine – brilliant news, cause for celebration. My 12 months for op date is 28 July – my Hubby’s 50th birthday. I have told him that I do not want to do anything on the evening of his birthday – this is so I can pull off a surprise weekend away.

    So Susan – which chocolate did you choose – I am also cheering here in Tamworth.

    Michelle (Aussiemum), please, please, please contact us.

    Tina, thank you. I will share this information.

    Leanne, ever time you feel an OUCH, picture one of us sending their best ever thoughts to you.

    I am sooooo sorry for the big piccie – I wasn’t bragging, I just didn’t get it right.

    Try and have a good weekend ladies.

    Sandra from the UK.
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  • marg1
    marg1 Member Posts: 73
    edited June 2006
    Hi Sandra, the big piccie was nice. Dont worry about it. You look great!!

    Leanne, sorry about the port, I dont know which sucks more my PICC line that I demanded was taken out post chemo or your port -- at least you can shower. I could'nt for 6 months, always had to have my arm sticking out of the bath tub. I am glad you are better and hang in there. A year ago I did'nt think I would be around and here we are!!!!

    Tina, Congrats on your last Taxol. I have been off since 2/27/06 and my neuropathy is still around -- not as bad but still there. I lost half of my big toenails. I hated that becuz I was one of those "cool pedicure with the rhinestones" kinda girl. Now I wear my Crocs 24/7.

    I am doing okay, got the go to start doing weight baring exercises. I will start the FIRM on Monday. If you have never done this workout it is great!!!!! 3Xweek for 1 hour and you'll see results fast. My weight watchers is still a struggle. I am back on the wagon again. Its terrible how weak I am when it comes to food. How stupid does this sound --- PIZZA or REOCCURENCE ? Can you believe that I sometimes cave -- what the hell is the matter with me? I am trying desperately to lose the extra 40 pounds. Well that is all for me. Hope all is good.

    Michelle -- How and where are you?


    Marg
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  • Pegk
    Pegk Member Posts: 389
    edited June 2006
    So far I've recieved info from Liezel, SandrafromtheUK, leannem, and lynnelb (she hasn't been able to log on since they did their site maintenance last month-I wonder if that could be Michelle's problem, too?)
    I've got name, address, phone#, email address, family info and birthday.
    Anybody want to include anything else?

    If anybody is in touch with anybody by email who isn't logging on currently, find out if they want to be included and get back to me.
    pegknyc@aol.com
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  • Pegk
    Pegk Member Posts: 389
    edited June 2006
    Congratulations to Maxine, Linny, Susan, and all those who coming up to their 1 year mark and getting the "All Clear".

    Tina, enjoy your vacation! Congratulations on finishing taxol.

    Marg, you are one determined woman! It seems like you are doing all the right things, but don't forget weight lost in a slow and steady manner is easier to keep off. I'll admit it. Pizza is one of my favorite foods. I just don't eat it every day.
    What is the FIRM? Is it something you need to do at a gym or can you do it from a video?
    My last bone density test showed a weakening in the bones of my forearm (osteoporosis) and weight bearing excercises were advised. Interesting since we're advised not to lift anything heavy because of lymphedema. But I'm especially worried because one of the side effects of Arimidex is bone loss.
    (I am now taking Actonel once a week to counteract it)

    I hope everyone is having a good weekend. It has been rainy and dreary here, but I managed to get in a 6 mile walk this morning.

    It's been 3 weeks since my "nipple" reconstruction and my PS says I'm healing well (it looks interesting) but I'm still getting fluid in my breast and it still looks red. She put me back on antibiotics and I go in for a checkup tomorrow.

    Be well everyone!
    Love, Peggy
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  • marg1
    marg1 Member Posts: 73
    edited June 2006
    Hi Peggy, The FIRM is a home video workout. I like it because you start with 2 lbs weights (or none) then work your way up to 8lb weights. I love it and can't wait to start up on Monday. I too have osteopenia from my last bone density test. I take fosamax weekly and I am on Arimidex (which causes bone loss). I must of missed the post where you said you were having nip recon. I am putting mine off for now, I still need to go back and get my expanders out and the permenants in. I have to wait awhile for the nip recont. I hope you get that redness under control. MY email is Robandmarg@msn.com.

    Marg

    p.s. what is the best calcuim supp to take. I am suppose to take 500mg three time a day. I am taking the chocolate vitamins with the vit D.
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  • foxxf
    foxxf Member Posts: 171
    edited June 2006
    Hi everyone,

    I have to admit I have been lurking lately but not posting.

    I have been feeling a little lost now that I have finished active treatment. After focusing so much on the battle it's become a "Now What?" situation.

    I had my Ovaries and port removed yesterday and that is the final step in my active treatments. It went well and I feel pretty good considering.

    After much anguish I have started to apply for Jobs and have enrolled in a Business Administration course through the distance education so I can do the work at home. Since I have finally made some kind of decision regarding the future I feel more hopeful...? Not quite sure if that is the right word to use? but I think that all through this journey I never let myself think beyond the next appointment/treatment. So to now refocus and think ahead is a very postitive step.

    Congrats to all who have finished and to those who have not we are here for you. Any time any way you need us to be.

    Leanne I think of you every day....

    I will add my details to Peg's data base and would love to hear from anyone who wants to chat.

    Best wishes to all
    Nicole
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  • leannem
    leannem Member Posts: 137
    edited June 2006
    Hi everyone

    glad to hear everyone is going well. Nicole- great to hear from you! Glad the ops went well. I know it is really common to have the "what now" feelings once treatment is over. BC is so all consuming and then to have it end??? I am glad you have enrolled in the business course- something proactive and great to help remove the chemo fog!!

    I am going okay at the moment I guess. I am having a bit of a struggle with the usual "will this ever end". Have been upset a few times lately and not sure how to get over it. I feel as though I have really had enough. It has been nearly 10 months of CONTINUAL chemo and I really really want a break. I am sick of being sick and tired. I sleep all the time and mostly feel as though I have nothing in common with anyone anymore. I went to my mother/baby group yesterday for the first time in months and sat there for the whole time feeling left out, nothing to contribute and wanted to go home and be alone. TOTALLY not like me.

    Any suggestions how to get out of this funk I am in? I am thinking of seeing my psychiatrist again but to be honest feel as though he wouldn't understand not having had cancer before. Does that make sense? I guess I feel as though no one gets it.

    The fight is getting hard and noone understands.

    Sorry for yet another depressing post.

    The kids are fine (on another note!) still tiring me out to no end but I am trying to enjoy my time more with them and not be so preoccupied with all the stuff above!

    Scott....well.... depends on what day you ask. Tonight is not fab. Again, I am running out of fight.

    love you all
    xoxoxo
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