Starting chemo Sept 05

txred9876

There is a new study out about weight lifting and lymphadema. I will try and find the link later today as my dad and I are headed out to go "city slicker fishing" (it is a covered dock and you sit on park benches and put your pole over the rail....LOL). This way I do not have to wear a hat or sun screen...

Anyway..the study said...when you start out with little weights and move up gradually....there is not an incease in lymphadema problems.

Tina

txred9876

Today was a day filled with good and bad.....Fishing was not so hot...but we had fun! (anytime I can outfish dad..LOL)

I got a call from a local reporter and they are going to TELL MY INFLAMMATORY BC STORY! I should know the details in the next week or so. On a flip note I called the local breast cancer resource center to talk to a lady who helped me in the begining of my journey (she had IBC and fought it for 6 years). I was informed she had passed in the last few days. This makes me even more angry about this disease and I want to spread the word!

Tina

Liezel

Oh Leanne, hang in there!! We are all thinking of you. Does your oncology unit not maybe have councillors on staff? They deal with Cancer every day and might be better equipped to help you than a psychiatrist?

I totally understand you just wanting to be alone. I was the same during tx. It is slowly getting back to normal now. When I meet new people, they don't know I have BC and just think I have a funky hairstyle (they say).

Tina, that is horrible. Forward us a copy of the article when it appears. Have you found that link?

My arm has been feeling very heavy lately. I went to a Lymphedema specialist on Monday, and she said while my arm is slightly swollen, the "pain"is just from the nerves connecting again. I do however have major fluid build-up in my breast/chest area round to my back. I thought it was the weight! Anyway, she did some Lymph drainage, and afterwards put on a special plaster that apparently "massages" the lymphs. The differenc is amazing. I see her again tomorrow. She is about my mother's age, and when she heard that my mother lives far away she declared that she'll be my mother and look after me. Had a number of calls to check if I am eating, etc (I nearly passed out from low blood sugar and low blood pressure while I was there). While I have met some extraordinary women on this journey, she really touched my like no-on else had! I am lucky to have met her...

Liezel

txred9876

My story won't air for a bit...it will be a video news story and not in print. The link to the station in seattle is www.komotv.com/ibc

It now has had over 10 million HITS! omg our prayers are being answered.

Tina

txred9876

no i have not found the link again but gave a copy to my lymphadema specialist I have been going to...I will try to remeber to get the address from her.

Tina

susan_02143

Hi all...

We were about to fall off page 1... so this is really just a bump. Hope everyone has a good holiday tomorrow.

More late,

*susan*

sholroyd

Hi all, just popping in to see how you are all getting on, particularly Leanne – chin up Leanne during this very rough time.

I heard something really sad and so unfair yesterday. A while ago I had been asked to speak to a friend of a friend of mine who had BC. We talked quite regularly on the telephone and she was nearing end of treatment. She also had some problems with her legs, nothing to do with BC. She fell down the stairs at the weekend which caused a clot on the brain – she didn’t make it.

Leizel, I loved reading about your stand-in mum – give her a hug from me cos she is helping and supporting you.

I am now popping in and out of work quite regularly so my time at home is now limited again, hence I do not log-in as often – doesn’t mean that I am not thinking of each and every one of our September Sisters and others.

I am also on Arimidex and my joints so ache; also I don’t seem to be enjoying my food as much. The 3-weekly Herceptin visits continue to be problem-free now.

I do hope it is only connection problems with Michelle – Michelle, please talk to us.

Thoughts to you all.

Sandra from the UK.

PS: I have had my official ‘no thank you’ letter from the BBC – good fun while it lasted.

PPS: Those holidaying on the 4th - enjoy - I have to go to work.

foxxf

Happy 4th July to our American Sisters.

Hope you have a great day!

Best wishes to you all
Nicole

linny

I was back in New York (6th time in 6 months) to see the kids and brought back my 8 year old grandson to go to daycamp here, and spend time with us in the cottage on the weekends. I am very happy to have him. The results of my follow up mammogram were okay, and I am seeing the surgeon on Monday for follow up appointment. Tomorrow is the one year anniversary of my surgery (and the beginning of my "new reality" as I call it) To be honest, I am still confused by the whole follow up visits program. If every doctor told me recurrence presents with symptoms, and is not found by testing, why do we see the doctors for follow up? They do not do scans, etc here in Toronto unless you feel sick or have specific indications. Oh well, I hope it is never relevant for any of us.

I guess the Aug. chemo thread from last year is finished.

Leanne, I think of you often and wish you the best. I met a lovely woman recently who had stage 4 BC - 10 years ago - she is doing very well.

Is anyone on tamoxifen having weight issues - I find I am very hungry, and unhappy to be gaining weight.

Peg, without going back to read all the posts, can you tell me about the data base - why you are setting it up? Thanks.

Did anyone watch the PBS special "a lion in the house" about kids with cancer - it was on over two nights, June 21 and 22 - I could not continue watching after the first night, it was quite horrible.

Best to everyone,
Linda

Pegk

Hi everyone!
My studio was dark this week, so I've had the whole week off, but I've been busy gardening in between raindrops and had some doctor's appts.
I've gotten permission to get my port taken out, but the first appt. I could get was in September. It really ached this week, but once I got it flushed, it felt better.

Linda, I guess the reason we want to start this data base is because going through chemo together, we've developed a bond, and now that most of us have finished chemo, some are not logging on as much. We wanted a way to keep in contact with each other without logging on. If you'd like to participate PM me or email me at pegknyc@aol.com with as much info as you'd like to share:Address, Phone #, email address, birthday, spouse and family

Susan, I've got info from 8 of us (including me). I've managed to put it into an appleworks database, but my computer skills are hit or miss. Let me know the best way to get the info to you.

Peggy

susan_02143

Hi All!

Life seems to continue here at a rapid pace, as though I was never sick.

I went to Georgia for a family wedding. My poor MIL is getting worse. She had no idea who I was, but since I was nice, she liked me. My daughter is home for the summer, working full time, and she has taken over my car. I now have to beg for my husband's.

I have NO work right now, and the pile of bills is growing. Very scary. I do have some music gigs, but that will keep us eating. It isn't enough to cover things like medical insurance. What is odd is, instead of being totally anxious, I have a feeling that it will all be fine. So not-Susan like.

I have finished painting the woodwork in my office, a job that I was doing when I was dx'ed. Now onto the guest room and those horrid dark purple ceilings! I need to scrape off the thousands of glow-in-the-dark stars, before painting though.

This weekend we are heading far north, into the White Mountains to spend two nights at my parent's house. Haven't been up there since Christmas, and never made it up last summer. One of my sisters will join us there, which should be fun.
*susan*

susan_02143

Tina, you are famous! How was the interview experience for you?

Leanne, no updates in quite a while. I hope all is well with you and the boys. I always worry that you have landed back in the hospital during your off-treatment weeks.

Sandra, well, the London trip did sound exciting. Just a little shocked that the show would troop women with Breast cancer to London already knowing who was going to 'win.' Looking back, I hope that you had a fun time.

Ack! A client in crisis.... I must go. Take care all,

*susan*

Pegk

Nicole,
Good luck with your job search and looking forward to a long future.

Tina,
Thanks for spreading the word about IBC. Yours is a story that needs to be told.

Sandra,
What a sad story about your friend. It's just further proof that we need to make the best of each and every day that we're given.
Too bad for the BBC, but I'm glad you had some fun.

Hang in there Leanne!
You're a strong woman dealing with an overwhelming, difficult situation, but we're all pulling for you.

Anybody up for a group "vigil" again this weekend? From Saturday afternoon in California to Sunday morning in Australia, light a candle and take a quiet moment to reflect on all we've been through during the past year.
We've been through so much, but we all have battles to face, whether continuing treatment or just getting our lives back to some semblance of normal. We can do it! We've proven that we're strong together and as individuals!
Take some time and send those healing vibes around the world!
Love,
Peggy

susan_02143

Quick Update.... I was right not to worry! A long time client decided today [after hemming and hawing for 18 months] to go ahead and rebuild their system! Low five figures, enough to get us through August! Whoohoooo!!!!!

*susan*

foxxf

Susan so happy for you, after everything we have all been through I'm sure some of us deserve a lucky break once in a while.

Peg, I am most definatley up for the vigal let us know times etc and I'll be there.
I had my port removed last week and it really is a relief to have it gone but it also feels funny to roll on to my side and not feel it there. Guess I got more used to it than I thought I did...what the? In the end it's gone and I am glad.

Best wishes to all
Nicole

tinkermax

Im up for a vigil ladies....let me know what time (in the uk) please.

Maxine

sholroyd

Peg - you are a mind reader, maybe because I am at the time when it all kicked off for, Leanne, my friend - oh everything. So yes I am with you, it felt so powerful last time.

Sandra

Pegk

Wow! I wasn't able to log in this morning. Now, all is well.
So, I've googled Time Zones again. I hope this works for everybody...
Saturday, July 7th US PDT(Pacific Daylight Time)- 3:00pm
EDT (Eastern Daylight Time) -6:00pm
BST (British Summer Time) -11:00pm
Capetown- midnight
Australia (east coast)-Sunday July 8th-8:00am

I spent some time at this site trying out different times. It's pretty interesting. You can find out times for sunrise and sunset for around the world on a particular day.
For example: at 8:00am in London, it's 5:00pm in Brisbane (just about sunset)
It's 3:00am in New York.
I tried to pick a time that was accessible to all. I hope it works.

I hope you all have a wonderful weekend.
I'll be sending my love and prayers around the world to each and every one of you!
Peggy

leannem

Hi everyone

Oh no I just logged on and realised I have missed the vigil!! That will teach me for not logging on more often. It is now 4.14pm Sat 8 July. I hope all of those who were involved were able to feel the love and support we truly do have for each other on this thead.

Chemo was yesterday- my big 10 hr day so am very tired today. Will post more later

xoxox

Pegk

OOPS! Leanne, I hope you log in again, because I was so busy figuring out times, I got the dates wrong!
Of course, Saturday is the 8th and Sunday is the 9th! Rest today and think about us on Sunday morning in Australia. We'll be thinking about you!
Peggy

lynellb123

This has been so frustrating. I've been trying to post since April, but I keep getting a "form expired" note whenver I try to post. I'm thiking of you all & have been reading about how everyone is doing. Know that you are all in my thoughts an prayers.

lynellb123

OMG I can't believe I finally was able to post! Hallelujah! I'm back! woo hoo!!

sholroyd

Welcome back Lynne, how are you? I will be joining you at 11.00pm here in the UK tomorrow (Sunday).

Sandra from the UK

tinkermax

Ladies

I wasnt sure if we were doing saturday or sunday.....so i lit a candle both nights at 11pm..and thought of you all

I hope you are all having a good day

Hugs

Maxine

leannem

Hi everyone

Hope your weekend was a good one. Unfortunately I didn't log back on so missed the vigil! Again!! However thank you for keeping me in your thoughts and prayers.

This past chemo has been beyond hard. I had it Friday it is now Tuesday and have only gotten out of bed this afternoon. The bone pain was excrutiating and haven't been able to stop crying. I just want this to end.

It was suggested that I tried having neulasta after chemo this week to help with my blood counts and try and keep out of hospital. I believe this is why I have had such a hard time as the combination was bone pain waiting to happen!

On top of it all, we had to pay for the neulasta shot as it wasn't part of the 'scheduled' treatment so $2000 later all I have is pain!!! Worth a try though to keep out of hospital.

I am just so SICK of it all. I NEED it to end. How do I keep this up? I am due for gemzar only this week then a week off. God help me.

xoxoxoxo

linny

Leanne, have the doctors not offered to give you pain medication for the bone pain? In Canada, the provincial government covers medical expenses not covered by regular health insurance - perhaps a social worker might have a suggestion to help you get re-imbursement for the extra $2000 neulasta payment. Thinking of you
Linda

sholroyd

I lit a candle especially for you Leanne, I do wish I could light something to help with your bone pain. I agree with Linda, try the Social Worker to get some money back - this worry you don't need! I also lit another for all of our September sisters and gave each and every one of you special prayers and thoughts.

I have just lit another candle for the family of my friend who fell down stairs, bumping her head causing a blood clot - after she had gone through all the treatment for BC - her funeral was today.

Personally I feel I am coming out the other end. I am beginning to feel a little more like me again - I think maybe going into work has helped.

As always, you are in my thoughts.

Speak soon.

Sandra from the UK

lynellb123

Leanne, I know that the Nuelasta can cause terrible bone pain, I always recieved a shot after my chemo treatment & wondered if it was worth the bone pain & discomfort. I wish you well & keep you in my prayers. How many more treatments do you have to go through? Maybe we can keep a cyber-scoreboard to help you see the end of the treatment tunnel. Know that there are many friends out there keeping you in thought & prayers.

Sandra, you're looking fantastic, hope you're feeling just as fine.

Peg, I'd like to meet for lunch one day, we can catch up on all our cyber sisters. I hope you'r all recovered from your surgery. How is the training going for the walk? How many miles will you walk?

Susan, the power of positive thinking....that's become my new mantra. So glad to hear the work is coming in.

Hugs & love to all my dear September sisters, I want to write a personal note to each & every one of you but the boards have been very tempermental with letting me post. It seems that if I delete all cookies first I can log on. Kind of a pain, but I miss my sisters & think you're all worth the extra effort!

Pegk

I thought of you all this weekend, but maybe we didn't have enough time to plan a proper vigil.
Leanne, why don't you let us know when you'll be getting your next chemo infusion and I can work out the times around the world so that we can all send you comfort and healing thoughts.

Lynell, Glad to see you back! I've been working 4 days a week, so let me know when you'll be in the city and we can plan lunch.
I've been trying to walk a bit every day and on weekends I've managed to get some 8 mile walks in. I've never been athletic, but walking really makes me feel good. I highly recommend it!
Hope all is well with everyone.
Peggy

foxxf

Well I didn't just light a candle I lit a bonfire! Hope it warmed your hearts.

Hang in there leanne!!

best wishes to all
Nicole