Secondaries

Hey Belinda,

I'm not gonna lie and tell you I know how you feel, cos I dont.

But I am gonna tell you that I would be feeling the same way and I think your restraint in language is amazing! :-) I know we're online and all but yep, I'd be lettin out those crazy a** words, just put some of these **** in there and we'll get you! If you cant say that stuff here, where can u?

Chicks at our age have got too many other much more important things in life we should be dealing with other than this shite! I've got 3 girls too (21, 18 & 10) and they are my life, so you have every damn right to feel angry and let down by the world.

Positivity is great and all but C'MON PEOPLE...BREAST CANCER SUCKS!!

Its that phrase that everyone says to you when you get diagnosed but I reckon its a crock! Lets see if THEY can be positive while dealing with surgeries, chemo, rads, vomiting, being bald, scars, stitches, hospitals..and that's on a GOOD DAY!!!! Then lets chuck in kids, work, running a household, school excursions, lunches, homework etc etc

WE HEAR YA BELINDA!!! YELL AWAY!!!

Sam xxxxx

I can't begin to imagine how you are feeling, dealing with a primary is hard enough. There are no words to comfort you but if I could I would give you a big hug and swear away with you. And believe me I have a potty mouth when the mood takes me!
Take care of yourself sweetheart this is seriously an Effed up disease.
xx Dan xx

However you feel, go with it.  Unfortunately or fortunately, I have not "done" the angry bit YET.  You need to let it out, punch walls, yell, swear whatever.  I deal with my diagnosis by keeping extremely busy - even if I ache all over.  The only person who knows my pain is my hubby - and I keep most of it from him!!!   I can't tell you how to feel - only be here to "hear" your ROAR.  If I could wave a magic wand and rid us all of BC I would be a very happy soul.  It is CRAP and it does CRAP things.  Please live in the knowledge that there are people on this site who care about you. XLeonie

Just wanted to say this whole bl**dy thing is shit, and you have every right to scream it from the roof tops, and I know what you mean about the stay positive line, if I have one more person say how strong I am I think I might throttle them, dont they realize we are crazy on the inside, arrh, would love it if we could wipe it off and flush it down, but seeing as that is not going to happen, I say bottoms up with a whole new meaning ( have a drink) and yell all you like.

Cheers Narelle

Oh Belinda i was so moved by your post it is gut wrenching.It is the fear we all try to put at the back of our minds and cant.Every pain every sniffle every cough.torturing our minds wondering it the goddamn cancer is back!
I too am sick to death of people saying stay positive treatments over move on! How the frick can I?With one boob lymphedema menopause ovaries removed so no more kids.grey curly hair kids who just want their old mum back.And im only 41.
I so feel for you and cant comprehend what you are going through.It is crap! Youve touched my heart and i wish i could say something to make you feel better.But i know their isnt.
Xx

Hey BelindaM -  Good on you for putting it all out there.  I too am really tired of all the pink ribbons and positive tough 'rahrahrah' that goes on.  No one it seems really wants to know about it when it goes to secondaries and all those realities you have to deal with.  Like all of us you really need the support and it is often not there although family and friends do try.  We end up supporting them more often than not.  Nothing wrong with a bit of language and thowing a few things around the place.  Scream, cry and let it all out - doesn't actually make you feel better  but it is a release valve of sorts.  Just know that there are a lot of us with secondaries out here - not that many want to talk about the reality of it all.  Yes, planning your funeral is shit - telling your kids and partner is shit, but they will surprise you with their strength.  Then again about the funeral thing, just think how many people would be shuddering with what happened at the end of day rather than being in control - if you are like me you want to be in control!!  Make sure your doctors actually talk with you not at you and emphasis to them that they must actually communicate with you as to what is going on rather than just waffling around the edges.  They also need lessons in how to deal with these issues.

Luv,  Jaci

Hi Belinda,

As another ABC woman, I can completely understand your feelings. It is great to be able to use this site to "vent", and vent we must. So much energy can be spent protecting our family and friends, so connection with others in similar situations is really helpful. I find your language very restrained!

I have no solutions though - we don't "battle" cancer, but endure what we must, and try to make the most we are able of every day we have. It's a wild ride.....

Best wishes..... Pam

WOW! Thanks Ladies, I actually didn't realise other people could read that!!! LOL Just a random vent LOL :O)

I am usually really positive and smile through it all...but sometimes it just gets me down! Especially as my Oncologist told me that if we can't find chemo drugs to slow down my tumors I will be gone before Christmas! :O( 

I am on permenant chemo now :O( 

I am planning birthday parties for my 2 girls (turning 6 & 8 n the next couple of weeks) and also my own birthday in a month.....and it's really upset me as it could be the last birthdays I have with them....the hardest part it that I can't talk to my family about my fears as none of them want to hear it! they just say "don't be silly, you'll be around for years yet" but the fact is I probably won't be! I have secondaries to my chest nodes stomach nodes, arteries in my chest, liver, rght lung and pluera! I am bloody sick!

I have accepted this to a degree but none of my family are there yet....I have planned my funeral (which was actually quite fun) and wriiten my own Eulogy and my Mum is upset with me and won't even read it! The fact is...we will all die one day, I am just a bit more prepared than most is all :O)

I am heart broken Belinda, it is beyond me how you manage to carry on. I will pray night and day that your Oncologist finds the drug required so you get another Christmas and even better more birthdays. Just know whatever happens you will continue to shine through your babies and I am sure they will be forever proud of their very special mum.

I hope your pain is kept to a minimum and your beautiful family finds the strength required to listen and deal with this incredibly unfair crappity crap situation you are all forced with. So freakin unfair!!!

Lara xx

Dear BelindaM and all others who have replied to this post.  Let's keep this one going.  I hate how they disappear off the site and you have to hunt for posts and replies.  Belinda's post deserves to be there for us all to see and to remind us of where this illness can go and the repercussions on the person and their family.

Belinda will need our continued support so I hope that BCNA will see the importance and all of us as well by regularly posting words of encouragement and support to keep this topic up there and in our hearts and minds.

This family also needs support to come to grips with what is happening and to stop pretending it is not.  Belinda needs their support as well as ours - let's be there for all of them by keeping this light shining.

Belinda, 

Good on ya! For putting your feelings out there. The first post I made here too I didnt know ppl could read it lol...

 Your post brings tears to my eyes, coz I have seen your strength and positivity thru another site. But I think you are still amazing and stronger than most. You have been dealt a very crappy card in life, but i agree we all have to die at some stage and I love that you have prepared things for your family. My heart breaks for you and your family and wish we were closer so I could meet u or help you and your family thru this. 

I pray and hope this new chemo works and this wont be your last birthday... 

I hope your family find the strength and support they need too.. 

Merylee 

Hi Belinda, firstly I was very sad to read your post. I also have ABC and have had to have and tried to have some very difficult conversations with people about my mortality...family and friends. It is so difficult when they dont want to hear it!

Can I also say that I faced a "critical" time in my treatment not so long ago. Chemo wasn't working and my Oncologist was very, very concerned. The cancer had spread from my lungs to my bones...widely and quickly. I started to panic, as did my treatment team, family and friends. A wise woman told me I had hit a "detour" in my treatment and not a "road block". It was time to experiment with new combinations of drugs to find the right one that worked for me, and quickly. Luckily, for now, I have found a chemo that is working for me, and I'm hoping and praying that this will also happen for you. Never give up hope Belinda! As much as you need to be realistic, there is always hope too...there has to be! Take care my fellow warrior, Celeste♥

Where there is life there is always hope - sometimes we do need to seek out the answers from many places. XLeonie

dear Belinda,

Last year I lost a girlfriend to an aggressive brain cancer - she was given a best case of 6 months (she actually made it to 3 and a half). Like you, she wanted people to accept that she was going to die, and to be ready for it. I asked her how she was dealing with each day and she told me she was just working through her own bucket list - a son's birthday, riding on  a motorbike, going to her daughter's next concert, her granddaughter's first birthday - just ticking off each one as it came and hoping to get to the next one. Living every moment.

You scream and rant whenever you need to, make your plans and try to help your family see how important it is to YOU that they acknowledge what's happening. If it happens later rather than sooner, that'll be a bonus !! But let them know that if they really want to do anything for you, THIS is what they can do.

Take special care of yourself my dear. Spoil yourself as often as you can. And spoil your precious girls too with a lifetime of memories.

lots of love

Keitha

THANK YOU ALL for your amazing support! We have a new hurdle to deal with now as My Husband is about to be laid off in a few weeks! (he's been working at his job for 12 years)  

I am trying to see this as a positive in this as we would be able to manage on Centerlink for a while and he will be at home for a bit (not too long! hopefully) to spend some time with myself and the children! :O) 

Anyone know of any Awesome paying full time jobs coming up? :O)

xox Belinda xox

Arent people just awesome! (unfortunately, text doesn't convey the sarcasm I feel) at least you can see the silver lining. Fingers crossed it all works out.
Big hugs ( and a few swears)
xx Dan xx

Well that's just peachy isn't it ! Anything else can be thrown at you ? The good part being that he's home with you and the girls. ( Do make sure that you get everything you are entitled to from Centrelink and every support service as well. It takes determination (and time) so your husband will be busy with that for several weeks to start with. DO NOT take no for an answer with them. Be nice, but firm. Sorry, stern advice over - we had a bit of a struggle with C  )

I am keeping everything crossed that something brilliant comes up for your husband soon, but in the meantime I hope you guys spend some really quality time together - have heaps of fun, do EVERYTHING, don't leave anything out.

Don't forget to wear all your prettiest clothes every day. Live in the NOW.

loads of love

Keitha

Belinda you were so restrained, I would be dropping/shouting the F Bomb!

just a quick note in case you may not know, if you have any superannuation funds in your name, that you can access that early and tax free, just apply asap.

and I would also contact your husbands superfund, as you may be able access some of that through the hardship clause. [there is nothing else that compares as hardship :( in my opn]

Bridget  ♥

Oh Belinda

You have so much strength and courage to do what you have done so far. I honestly would have crumpled at the thought of organising my own funeral.

You have made me cry, not just for you, but for your lovely husband and your gorgeous and adorable girls.

I wouldn't be saying the crap word, but like the others shouting from the rooftop, why me!!! with lots of swear words.

Make the most of each day with your lovely family. Cherish every moment of every day and spoil yourself. Write letters to your girls when they have birthdays, engagements and weddings. So they will always know that you are there shining from above.

I can't walk in your footsteps, and know how you really feel. But,  if we all had that magic potion, we would, with no hesitation give it to you.... and make it all better. I wish they had a cure for this F****** horrible thing.

Oh my lovely..... just make sure they try every avenue here or overseas.

My thoughts are with you my sweet. Love as always Julie XX

Hey sweetie

I love Julie's idea about writing letters to your girls for later. I wonder if you have thought about making an album of YOUR life for them to look through as they grow. Photos and mementos, thoughts, funny stories, schoolday stuff, all the sorts of things they would be asking you - they would have somewhere to find the answers. I guess it might be painful for you, reliving your life, but maybe in the middle of the night if you can't sleep it might also be something to do that you know they will cherish and so give you some comfort ?

:)

Just a thought, feel free to toss  it right out and tell me to get lost :P I feel completely inadequate and totally ill-equipped to be giving any advice to you as I am sure you have thought of everything you possibly can to be prepared for something that no-one should have to prepare for at your age. It's just so bloody unfair, I weep for you. I wish there was something more I could do.

With the fondest love

Keitha

What on earth is going on in this world where someone as young and beautiful as you has bc  secondaries.I don't know how the bc fundraising  money is dispersed for which research but it should be targeted to young women like yourself. I can't begin to imagine facing secondaries when my girls were so young.It's just bloody wrong,wrong,wrong.Yes you have to be realistic but keep hope alive.Celeste has wise words in that the right chemo combo maybe just around the corner for you.Love and hugs to you.

                                           Tonya xx

Hi I saw a report on this drug the other day on a show cant remember which one, It may not be available here or even be an option for you and I hope the link will work, the story showed  women who had done the trial with no chemo side effects at all, and their comments where that they didnt have that raw on the inside, being poisoned feeling, is only for HER positive I believe but worth a look at least, dont want to get your hopes up on anything, but who knows there may be a trial here in Oz

http://www.sciencedaily.com/releases/2012/06/120604094115.htm

All the best for some happy times soon

Cheers Narelle xox

Hi Belinda
I am a fellow ABCer and also have young children. I understand where you are coming from. Enjoy your family and (where possible) cut out those who stress you out.
Be kind to yourself.
Amy x

http://news.yahoo.com/experimental-drug-trains-immune-system-shrink-tumors-214156197--abc-news-wellness.html

Might be worth a look. Hope you are feeling OK, you are often in my thoughts.

Still praying

Laraxx

Hi Belinda

I'm fighting that secondary s*** almost 6 years. Never give up!Never! Since then i had a stroke, developed diabetes, Im spending as minimum a week each month in hospital... yeh it is exhousting it is not a good life,but it is still a Life... I wanted to die when I had a stroke I though this is the end.. but then why i would so easy give up...? im wishing u all the best. keep fighting for u and for ur kids.

@ such is life:

yeh that's true.

Right know St George Hospital is providing that trial.Im on it. IT WORKS!!!!!!!!!!!!!!!!!!!!! Almost no side effects. That drug is for  HER positive BC and if u had only 1 line of Tykerb+Zeloda and multiple lines of chemo. If interested message me Ill send u more info or I may ask my trial coordinator what do u need to do to be qulified for this trail

Hi ladies, THANK YOU so much for your support...I asked one of the leading Breast cancer Oncologoists in Australia about Avastin and she said she doesn't think it will work for me as I have not to responded to the other 4 types of aggressive hormone suppressing therapy they have tried so she doesn't think it will be of any benefit to me :O(

I am loving having hubby home! Although he is ready to go get a job...any job! LOL After 2 weeks of being a house husband! LOL He said to me "I get no time for myself! it's all just cooking, cleaning, washing and cleaning up mess!" ahhh yeah! Welacome to the last 10 years of my life! :D

Have been trrying CMF for the last 4 months with mixed results...my WCC isn't recovering well and the last CT results were mixed...chest, lung & pluera mets stable and some have shunk! YAY! BUT Liver mets have increased in size and number...but the large one I had 7.5 cm (ran through the lung and into the liver) in November is gone....very puzzling?...so I am having an ultrasound this week to see what is going on...Am switching to weekly Abraxane next week,...not looking forward to losing my hair for the THIRD time in 3 years! It really upsets my girls...my son (he's 10) thinks it's cool cause I look kinda army LOL..

So since I am losing my hair soon...had some family photos done on the weekend...it was so lovely, gorgeous location, photography was lovely, beautiful spirit :O)....Just enjoying the gorgeous Brisbane weather we had and enjoying each others company :O) ,

Have also been diagnosed with mixed connective tissue disease/Lupus and auto immune arthritis :O( ..BUT the silver lining is that the Dr's currently think that at least 2 of the liver tumors and some of the chest ones may be benign tumors linked to thte Lupus...we shall see....

Enjoying each day with my family and friends as best as I can :D

.LOVE TO YOU ALL m Pink Sisters xoxox 

You are amazing Belinda, so inspiring and strong. I am so happy to hear you blogging and I'm praying for some more good news without the puzzles. It sucks you are going to have to lose your hair yet again I can understand why it worries your girls too. Lucky you have such a beautiful face to compensate. Stay strong and well and continue enjoying and loving your wonderful family. You are living and appreciating life now more than some ever do in a life time. Well done you clever chicken. Hugs Lara xx

Dear Belinda,

We are here for you.  And YES! that 'thinking positive' stuff is great in theory for those who aren't going through ths crap.  Some of my family have stopped speaking to me, they think 'I'm all better now', but you are experiencing what we all fear the most.  I tried to talk to my family about funerals and stuff and they tell me "Don't talk about that sort of thing"............ok, I'll just walk off and whistle like nothing is any different, you know stick my head in the sand.  I pray dearly that things pick up for you and remember as I said "We are here for you" Vent your little cotton socks off, it's ok by us - love and hugs from Josie x x x 

Hi sweetie, so good to hear from you. Have been thinking of you heaps and wondering how you were going. Was worried when you hadn't blogged. Keep strong and positive and You will fight this.
Hope your ultrasound goes well and results encouraging.
Lovely to have photos done, and I am sure you looked fabulous.
You are so amazing and the strength and courage you show is truly inspiring.
Enjoy every day, cos the sun shines within you.
Lots of love and hugs to you Julie xx

Benign ? How good would that be !!  I've got EVERYTHING crossed.

Haha - love your h grumbling about housework. Mine hasn't yet, but I'm ready for it !

Your photo sessionsounds wonderful , stick them up all over the house, have those smiling faces lifting your spirits every day. I'm not suggesting you stick your head in the sand, but it seems to me that you are keeping a very realistic outlook and part of that is being hopeful. Bodies do weird things, sometimes the unexpected happens. Here's hoping that's YOU.

Keep fighting girl.

magicmum

Well ladies I am sad to report that things are NOT going well...

I have been trying Abraxane at half strength for the past 3 months and it has been an EPIC FAIL to say the least! Many of my tumors have tripled in size and I have had extensive progression all around. I am totally & uttererly gutted :(

I knew treatment was not going well as I wasn't feeling very tired and short of breathe and have been in ALOT of pain. But did not expect things to have gone pear shaped so quickly....

Soo...basically now I have been refered to Pallative care for pain management and have chosen to try yet another chemo in the hope it may buy me a bit more time with my 3 beautiful children and very brave husband! Although my Oncologist has advised me if this doesn't work...I may only have weeks left :O(

Just in case, I would like to say a HUGE THANK YOU to all you ladies who have offered me so much kindness and support through this journey, it's been tough and painful but at the end of the day I have gotten a year with secondaries and time to prepare my family and tell them how much I dearly love them....that in it'self is a wonderful gift :)

Peace out my Pink Sistahs! LOVE TO YOU ALL xox

Hi Belinda, well my darling - what can I say, I am shocked and deeply upset - it makes me realise how darn fragile everything is.  Unusual for me but I am having difficulty in expressing myself, but can I say that I wish you love. X x x Josie

I was so sad to read your blog but inspired at the same time.Your courage is beyond words.I hope another chemo will buy you more time with your lovely family.Sending love and hugs,Tonya xx

Belinda ... I have been following your journey over the last 6 months and I find your courage totally awe-inspiring.

The fact that you have accepted the inevitable and have used this precious time to spend with your family and create memories they will always hold onto, their birthdays, and yours, Christmas and the New Year (perhaps not on as grande a scale as you could wish) means that in time they will remember you with smiles not tears.

It never ceases to amaze me that through this bloody disease we make contact and form friendships with people we may never meet in this life but I'm sure we'll all get together some where, some time. Until then ...... Much love to you and yours

Shirl x0x0x

Dear belinda thank you for sharing your story. I too have been diagnosed with secondaries this year & reading your story inspires me to know that you can do whatever it takes to fight back. I agree with you, this disease is shit & crap but you are strong enough to fight it to the end.
Take care & love to you & your family. oxoxox

Belinda - I cannot even begin to imagine the world you are living within.

Your honesty in sharing is just purely inspirational and I can't find words to describe your courage.

Every word I start to type just doesn't seem appropriate.

Your have given your family everything you possibly could have - lessons in courage, inspiration, strength and most of all immeasurable and unconditional love.  They will hold these in their hearts for their entire lives.

May you have relief from pain and as much time with your family as possible.

Love to you and your family.

Leanne xx

Belinda

I just dont know where to start. I am sorry, but I have just got onto my laptop from being away on holidays.

Just cherish every moment you have on this earth with family, your beautiful children, much brave husband and friends. You have even given us - Pink Ladies - courage and strength from your blogs. I totally thank you for that :) and big hugs.

It will not be easy for anyone, but you are showing so much courage and determination to fight this wretched cancer. We all send you positive thoughts and blessings.

Hold every moment in your heart and thoughts.

Hope you have as much time with your family.

Love to you always Julie XX

God bless Belinda
My thoughts are with you and your brave family x