Just needing to take to people that understand.

trishbod

Hi everyone, I'm a newly here and well everywhere, I  read all the post in hope someone can answer my question without me asking, It's like if I ask it will make it to real for me if you can understand. But well I'll have a go I had a double radical mastectomy with all mussal etc also removed, 5tumors from 2 and a half cm to 9 and a half cm, 37node with 12 positive,   grade 3, stage 111a i think as every tumor was graded 2 to 3, I got lpyodina in my right arm straight away so i wear a arm and had garment every day etc, I had all the chemo and rado, that i cant have anymore rado if it was to come back to my upper body, They have said on my report that I have a 37% chance of survival, I finish every high doses of chemo and have been on Ferema for the past 3 years, the doctors have said that I am to stay on that for the rest of my life instead of 5 years BUT I stopped  taking it  as I wanted to no if this was causing my bone pain( no one knows I have done this, but also no one know about the pain I have)..............My bone pain has not gone away, in my legs and well whole body, I so sceard to tell anyone even my doctor, I hide it well as I just want it to go away....... so here I am writting  here. I have 3 children my middle child past away from cancer, My other 2 are now 23 and 14 I'm a single mother and I live for them, They think I'm so strong I dont what to let them down ( I'm crying as I write sorry)  I see these post and read the lovely words you all give each other it's nice. anyway anyone post back would be nice. Xxx

trishbod

Sorry ment to say : just needin to talk to people that understand.

geewhiz

Welcome Trishbod!!



I so totally understand your feelings!! It has just been 2 years for me, and I get scared often. I guess my odds of recurrence are similar to yours since we share the same stage...but I think it's the other way around....we have over 60% chance it WONT come back.

Kids add a total other element to the fear...well, they are really about all I worry about. I am not afraid of pain, or dying. I am afraid of leaving my children without a mom. And I cry as I write that : )

I am so sorry for the loss of your child. Such sadness.

But we are here now, and I intend to stay this here for a lot longer.

Keep posting...lots of us feel the same as you!

trishbod

Thank you for the reply Yes I agree I'm more worried for my children than myself, I question what is written in my report about the 37% of survival with the specialist and they said it was right with all there maths work and I just don't know how they came to that 37% chance of survival rate, they don't know me I'm a fighter I have children that need me more than anything We are mums, to me no maths work can work that out LOL, how are you doing if you dont mine me asking, I dont talk to my friends about it as they cry and it makes me feel bad that I said anything, I dont like to talk to doctors although they are great as I'm sceard of what they tell me.

geewhiz

That's right. Every person is different. The doctors don't really know you. Those are numbers. And honestly...I think they gave you some wrong numbers. I am a fighter too. I fight to stay here for my 3 kids! You were diagnosed so LONG ago....you are going to be fine! It's so encouraging to see a stage 3 so many years out!! Congratulations! What an inspiration!! Do you have any secrets or tips for the rest of us?

I am doing great, thanks for asking! I get sad some days, scared some days. I work hard at eating healthy and exercising. Next week I have reconstructive touchup surgery, and I am NOT excited at all about it. I am feeling good, so hate to throw a surgery into the mix!!

faithfulheart

You are an unbelievable women!!!!!  God bless you!  I am so very sorry for the loss of your child. You have an angel with you all the time. You were dx so long ago, statistics have changed alot in the last few years, however you have been out a long time. That is a great thing.  I am a little concerned about you going of the femara,  I feel in my heart you should tell your dr. about it. I also think you should mention your bone pain sweeti.  I know how scared you are believe me.  I have 2 small kids,  I am not afraid to die either, I am just afraid to abandon them. That being said though, if you don't  tell the dr. whats going on, they can't help. I am sure your bone pain is from the hell your body has been through over the years, but if it was something, there is so much they can do now to prolong  life and even put us into remision!!!  You will be in my prayers, stay strong,  you are amazing and you have had a hard road.

We are here for you, please come back to let us know how you are doing.

Big cyber hugs to you my sister.

trishbod

You people are so lovely, thank you for your kind words and understanding, Geewwhiz my secret are my children, faithfulheart good luck with your opp, I will keep in touch, again thank you,Xxx

Racy

Hi trishbod, I am also in Australia (Brisbane). You have been through so much and I am sorry you lost your son.



I understand your fears about your pain but as faithfulheart said, your doctors can't help you if they don't know about your symptoms. If there really is something wrong, treatment can help and no treatment is likely to make it worse.



I am wondering if there is one of your doctors whom you feel comfortable enough with to tell about your pain, maybe your GP if not the specialist. Do you have a sister or close friend whom you could confide in and who could go with you to the doctor?



Perhaps speaking to a counsellor would help. You can access free counselling through your State Cancer Council. I had 5 face to face sessions after I was diagnosed but they also offer telephone counselling. Your hospital can also likely put you in touch with a social worker or counsellor. Also, if there is a BC support group in your area you can talk to them. (In Brisbane, we have Kim Walters Choices and Chicks in Pink).



There is an Australian Sisters thread on this site where you can connect with other Aussies. Some of them may be in your State and able to recommend support groups near you.



I wish you peace. Let us know how you get on.

ma111

In August 2009 I had a 2 year 30% chance to survive. I am also a single mother, however, my youngest is now 18 and moved out.

I sometimes get down when I cannot do the things that we must do as mothers and think that my daughter would be better off with out me instead of having responsibilites around the house. I often consider stopping treatment because I get tired of being sick, not able to go to work or have problems doing the yard work.

Stopping treatment is your decesion to make and I totally understand. However, have you considered taking celebrex or something to help with the pain? I had a talk with my family doc and my onc, they are now faster to help me with side effects to help me stay on treatment. DO talk to your doctor, I think he/she would help with side effects, if they knew how you felt about them and how much they were bothering you. Sometimes I think they do not realize how much SE's bother us!

I totally understand the SE issue and have skipped some chemo treatments because of them. Now I have all kinds of SE pills. If I need more I go to the er/urgent care center for torodol or something. Tordol is non narcotic, so you can drive yourself on it.

trishbod

When I stopped the ferema, now a about 2 months , I started to get the, what I call the period pimples happening on my face and the cry thing started  again, all hormonal, not a good sign.!      ( this is what was happening before I was diagnosed).

The bone pain just over took me as I stated above, I do  have great doctors I must say, But it's me that's not telling them.They have asked for test on my bones and blood test over a month ago now, they said they were not too happy with a few things and just wanted to make sure, I didn't tell them my problems with pain etc, I was too seared to tell them and I  wonder what they see, to ask for these tests.

I feel so selfish that I am able to have the medication to try and stop this, to think women in poor countries don't have this opportunity and I maybe just letting it go............... for this i started the tablets again tonight and hope I'll get the carriage to have the test ASAP 

 Unfortunately I am a too proud a person and  this has put me in a corner were although I have great friends I feel I can't tell as I am so strong (NOT) and will beat this.

thank you for listening Trish xx

trishbod

gosh you are the closest to me situation , sorry but thank you I'm not alone in this............. please keep in touch and tell me how you are. Again thank you.

Trish Xx

trishbod

@ ma111,Thank you for that info, I will look into it, I hate that I stopped my treatment, But 

 am glad I posted and you have answered , now I'll ask the doctors mmm maybe lol. Xxx

trishbod

@racy thank you too and yes I'l take your peace lol thank you for info.Xxx

ma111

Trishbod,

pride to not ask for help can cause injury. If your onc won't let you have soemthing than go to your family doc. that's what I used to do before I changed oncs/ The thing I like about celebrex is that it does not make you tired.

Your friends that think you are so strong probably want to help more then they do but do not want to hurt your feelings. Feel them out a little, but they understand more than you may think.

Anonymous

Trishbod,  First, I'm so very sorry for the loss of your beloved child.  You have been thru so much.  You were diagnosed in 1996 and it's now 2011.  Wow, you are 15 years out, am I correct?  I totally understand your issues with SE and not taking your Femara.  I have been recently dealing with these issues myself.  I know how hard it is to deal with the bone and joint pain.  Whenever I complain of bone pain my Onc sends me in for Scans  His job is to keep the cancer cells at bay, and I know you are fearful of telling you docs about the pain, but if you are experiencing SE's such as pain from the Femara, he will be able to try something new or precribe medication to help with the SE's.  Be Honest with your doc.  That is the best way to stay ahead of the BC recurrence. Do this for yourself and your children.  Stay pro active with yourself.  You are a 15 yr Thriver, Survivor!!  You give me hope.  God Bless You.

Barb

trishbod

So sorry guy I have the wrong  date down, I first started treatmant in Sept 2006 I;ll try and correct thing in my profile.

Every time I told the doctors in the past yep scans are ordered, so I stopped telling, I was to have a bone scan 2 mths ago( as this year alone I have broken 3 bone, but have not done it, I stopped the treatment for the past 2 mths instead to see if it would at least settle the pain in my bones but it hasnt, now the fear has taken over to have the bone scans..........but you guy here have been just great you are reminding me of who I am as I started to for get myself.

Thank you

msphil

Hello sweetie, I do also know what you are feeling, But you said you are a fighter and you are you survived this long because of Your determination and strength, so keep it up, keep that HOPE I did and I am now a 17 yr Surviver, my faith, family and my sheer determination kept me and keeps me going, I too had bone pain but it started to ease up a few years into my survival,so please don,t give up and I will be here for you and all, I,ve been here since 1997, God Bless.  msphil(idc, stage 2, 3 nodes, L mast, with reconstruction(body rejected the implant it was removed) chemo and rads, and "ALL while preparing for my wedding" and 5 yrs on Tamoxifen(for reoccurence).  

trishbod

msphil thank you for reminding me Xxx it's so easy to forget. Barb love your love sign Xxx