Who me ?

So sorry to hear you are going through this awful bc thing but good you've found this site.Your stomach is turning cartwheels from anxiety,that I can assure you.The waiting is the cruelist part and no amount of worrying will alter Tuesday's results.Write down all your questions for your doctor and then keep really busy and distracted ALL weekend.We have all been in that dark place where you are now.Once you know the plan you will feel much better.Hope you get clear margins and nodes.Let us know how you go.

                                Tonya xx

Hi Magicmum

Yes, we have all been through the wait. As Tonya has said, all the symptoms are just nerves. Just try and relax and whatever the outcome, you know that the plan is there to make you better.

Please let us know how you go and our thoughts are with you on Tuesday

Love Julie XX

If your nodes are clear it should be isolated and no need for further scans but you take what it is and deal with it as best you can.

Ask your Dr. all the questions you want about anything and everything, have a list and make more as you go , you are paying their wages by the way, whether be private or public they are on your dime so to speak.

Your friends sound great, I still have a group of girls from 32yrs ago at high school we meet  weekly and they have been my strength, hubby and daughter are great but you don't like to worry them so it's the girls or here and here is open anytime, lol. 

Regards,

Cheryl D

2 weeks ago I had my last treatment of 6 months of chemo. Whilst I am so glad it's behind me I am not ready to celebrate. I am still very weak and weary and my muscles are constantly aching, sometimes stiff. The doc said on Thu I was doing 'well' after I told her all this. (I have a different definition for well!) Also she said that this pain and fatigue will continue for another 3-4 weeks. I start 30 days of radiation on mon. I wonder when my hair will start growing back and when will the muscle pain ease and when do my taste buds come back 100%. Is there a general answer or does the time frame differ for every one?
Having said all this I am trying to focus on the good in my life not just the hard stuff. There has been quite a few things to grieve over so far but plenty more blessings to be thankful for. I'm even grateful for a cozy bed to rest in!

12 hours to go and I'll know if I have lymph involvement. I thought I was all settled and ready to go forward with either "yes" or "no" - but right now I just want it all to go away. That's normal, right ? It's only been a bit over 3 weeks but it feels like forever. I read all your posts and how much people are surviving through and feel pathetic for being such a wimp. How in the hell am I going to make it through more than this ?

Gotta be just a bad patch - middle of the night stuff. It'll all look better in the morning.Sorry.

Magicmum.... no need to apologise..that's what we are here for.. to support each other through this thing that we all have in common. We're been there... and you get through it. The waiting is the hardest.. as are the nights when our brains just wont shut off..

How do you stop yourself from asking your doctor for cancer scans on every part of your body?  Don't - ask him. He may even offer just to put your mind at ease... Tell him how anxious you are... but again be assured in my experience they  test.. test and test again.... just ask what they are for and go with the flow (easy for me to say now... I spent my first six weeks curled up on an anxiety ball, second guessing everything) But as others have said once you have your treatment plan and start on it things settle down.

take care and be assured there are people out here thinking of you and wishing you the best.

Trina

Thanks ladies, I am trying. Floundering right now but as you say once I know what's what I reckon it will be better.

Chin is up this morning. Only 4 hours to go now.

Keitha

Waiting to hear from you , hope you are okay. every thing you are feeling is a normal reaction to a mega crap situation. we ALL understand. and believe us what ever the out come we are all here to help and support you. and we are all stronger than we had ever thought. 

the waiting is the pits. hang in. xxx Fran

Is this what it feels like to win a lottery ? I think so.

Clear nodes, clear margins on my 9mm tumour. E & P + and just waiting till Wed next for HER2 status. My wounds are healing well, just a bit lumpy and bruised of course.

I wept with relief, my husband was confused ! Says he can't understand women crying when they are happy ! I haven't cried for 3 weeks, it just overflowed. I know there is a long road ahead - but it has a map now, and a destination of sorts. And I know it may return. But I'm a winner today, so I can be a winner again. I feel so lightheaded, I feel so fortunate. I LOVE my surgeon. He did say that he just couldn't take credit for the pathology ! But I told him that he should for the lovely surgical job.

Wow!

I will be back again SOON with a MILLION questions about radiation and, possibly, drugs if I am prescribed for the HER2 status. I know that you will have the answers for me.

Thank you all for the lifeline, the companionship, the sense of community. What a wondeful thing the Net is !

loads of love and joy

Keitha

Hi Keitha

Thats fantastic news. Yes, now you will know what needs to be done.

Keep posting away.

Happy days for you. Love Julie XX

Great news! You are definitely a winner in the cancer world.What a relief to have clear nodes,that's the biggy.

                             Tonya xx

Congratulations Keitha... clear nodes and clear margins.. what more could a girl ask for? You are on your way to recovery...

Please keep us posted of your progress and feel free to ask lots of questions..  I look forward to reading your blog.

Trina

On day one I made a paper crane, and I have made one every day since. I will keep making one all the way through until I get to the end of my treatment. At the moment they are sitting on the top of the windows but I think I'm going to run out of space ! I might make a chain and hang them from the ceiling in my new craft room which my gorgeous husband has been renovating for me. It's a angible sign for me of moving forward, of progress and success and renewal. And aside from that, they're very pretty !

HI Magicmum, what a great idea, and with  real meaning. I will have to look up on "google" how to make paper cranes. As I think its a terrific idea,,, I will make them after each treatment, as I don't really have any room to hang them.

Hope you are fine and progressing well. Keep up posted.

Julie XX

********

The paper cranes are so easy to make Julie and SO PRETTY ! If you hang them on a thread in a breeze they look as if they're flying.

*********

But now for today's results . . . .

Oh well, can't win them all. HER2 is positive. I know that's not totally horrible, just adds to the risk factor, but I was feeling REALLY positive this morning so I was kind of disappointed. My surgeon was surprised, he wasn't expecting it at all. He is sending me to an oncologist at the sharp end of treatment cos he's just not sure whether or not I should have Herceptin, given that my tumour was so small and everything else was good. I'll be seeing her in 2 weeks and also having a first visit with the radiation clinic to set that up. I think I'll allow myself to be glum tonight, I know I'll be ok in the morning. No point in dwelling on what will be - won;'t change anything.

In the meanwhile, next week I'm travelling to the big island to see my eldest son and a show !  A diversion I actually planned ages ago - before this all happened, another lifetime ago it seems.Can't wait, lots of fun. Travelling with my baby boy (19 but always the baby) and he and I always have great fun together. I shall window shop and stroll and generally have a fine time.

Chins up girls. Moving forward.

Keitha

Yes,just wallow in it if you feel like it.Nothing wrong with that,-can't be upbeat all the time.It seems like 2 steps forward and then 1 step back with this bc journey.Your paper cranes sound like a lovely idea and your trip with your son will be  a great distraction.Gotta grab some fun and laughs when you can.

                                  Tonya xx

buy up big girl , retial therapy is a great happiness pill. 

goodluck with what ever treatment you have , and it is normal to be a bit flat, we have all been there. and it is a normal reaction to an abnormal situation. 

we are all here for you.fran

I have learned so much in these past few weeks and not the least of these is how lucky I am.

Even though I am afraid of this disease, if I could swap what I have with one of our younger sisters with ABC, I would - in a heartbeat. I have at least had the joy of watching my children grow into adults, I've seen one married, I've had a LIFE. If there was a way to swap my elder years for someone else to have that chance then I would do it.

It's not fair - why do those beautiful girls have to die so soon ? It's not right.

When we see all the millions spent around the world on movie stars and sports people and by millionaires on goldplated bathrooms doesn't it make you cry ? Couldn't they pour  all that into finding a cure ? Surely someone somewhere could find a cure if they had enough people and enough money to fund the research ? What's wrong with the world ?

It's too depressing.

:(

Keitha

I couldn't agree more ! Keitha,you and I are the lucky ones in the cancer world.We have seen our kids grow up and hopefully,we don't have secondaries. It's all a matter of relativity isn't it. My poor brotherinlaw has aggressive brain cancer-now that is a dreadful one. You almost start to feel grateful that you"ve had one of the "good"cancers.We owe it to our pink sisters who have secondaries to do whatever we can,be it support,lobbying etc. But take care of yourself Keitha as it is still early days for you.

                                    Tonya xx

1.30 and here I am again.

Today is a good day. I WAS depressed yesterday - it just all piles up sometimes I think and seems so f***ing pointless.

Had a good chat today with a very long ago friend who I learned had BC about 8 years ago - lump out then mastectomy / chemo / Tamox and afterwards managed to struggle through a marriage break up (just what you need !) BUT she is fine. Loving life, doing everything she wants to do, sharing her story, just getting on with it. It helped a lot. I don't know why it makes me feel better knowing someone else has had it, I spose KNOWING someone and that they are a survivor makes it more real. I will be glad to get on with the treatment I must say - once again, the waiting. . .

I heard from my eldest son's gf today and I'll be spending Tuesday with them when I get to Melb !!  Yayyy !! Haven't seen him for a while so that's a real treat.

Thanks girls.

Love to all

Keitha

Hi Keitha

Yes, the depression seems to catch us at times. Me.... was just last weekend.Couldn't stop crying for some stupid reason. I felt like a freak, looked like a freak and my body feels like a freak. When will all this end?

Body, mind and spirit had a real low.

But, then you seem to get out of it, and just keep on going.

I visited the Radiologist yesterday to talk about the next plan of "attack" after I finish chemo. I have to have 30 sessions of radiation.... I just cringed at the thought of soooo many. Why do we need to have our poor bodies go through all this.... it's just unfair.

Thinking .... is this normal to have so many? Or this is just the norm with us girls?

But, deep down I know this is all to be done, so we can survive for MANY years to come.

Glad, you are staying with your eldest son, it should be great. Hope you have nice warmer weather, as it has been quite cold there lately. Have a great time...... you totally deserve the rest and break.

Love Julie XX

Oh Julie - what a prospect, I am thinking of you girl, good luck with all that.

********************************************************************************

Wow - had a fab time ! The weather was kind to us, it was cold but not wet, a little windy but ok. I spent the first afternoon with my eldest son and his gf and then had dinner with them before the show which was excellent.  The hotel was fine with a great breakfast included. My youngest son had a wonderful evening with some friends and then we spent yesterday at Scienceworks and then shopping ! He loved doing that too ! We found some very interesting shops - it's always fun in another city where there are shops you don't have at home. We had some nice food, we laughed a lot, it was an all round good time.

Wouldn't it be good if it was holidays all the time - I would love that. *sigh*

Back to the real world now. Oncologist and radiation set up next week. Wish me luck.

Keitha

Hey Keitha

Great to hear you had a fabulous time. It's great going away on holidays, but then reality has to come back.

Wishing you luck as always with your appointments.

Love Julie XX

Oncologist wants to throw everything she has at me because of the HER2 positive.

:(

Startng chemo next Tuesday plus Herceptin, radiation after the 6 weeks of chemo, with Herceptin for the year then endocrine therapy at some point (We'll discuss that later when this lot has sunk in ! she said)

I've had a good cry. I know that in the scheme of things I'm still a lucky bunny with a tiny tumour that for the moment has all been removed - but today I am once again very VERY frightened of the possibilities. I want to know and understand why this has happened,  and I know that question has no answer. And the next one - will it happen again and will it kill me ? has no answer either. I know you all ask those too, I know some of you have a big YES for the last one and my heart is breaking for you. We humans can get to the moon, we have sent a craft out into deep space - but we can't find a cure for a disease that is KILLING US !!!!!

Not looking forward to losing my hair btw, it' s been looking really good lately, shit. Does it take long to grow back ? I really hope that the chemo doesn't give me headaches - I have just got on top of my migraines for the first time in years. Wouldn't that be ironic.

Sorry folks, self pitying rant over. I will put my positive hat back on.I might need a hat actually, not sure how I will look in a wig :P

I'm hanging in girls, thanks for the love.

Keitha

Hi Keitha

We have all had a cry.... me many... It's all part of this horrible nightmare we are all facing, to make us cry and ask those questions.

I suppose we are all lucky bunnies in some way or another. Atleast we have found our cancers and are now getting them treated. Just think that there are others out there that may have cancer and don't know it.... thats devastating.

We all hope that we never have the cancer return. And I hope no-one has it return.I keep you all in my thoughts.

Hope your chemo goes well next Tuesday. Will keep my fingers crossed. Hope you have a good recovery and mimimal side effects.

 It's not fair that we must endure so much, have many questions and expect lots of answers.

The losing of the hair, sorry it happens to all of us. Just part of the unpleasantness ( hope I spelt it right) :(.   But atleast when it does grow back, it will be beautiful. Can't wait for my time to come... to be able to ditch the hats, turbans and caps. Get a haircut and wash my hair.

Don't feel sorry, we all have those days and feelings. Atleast here we all know what you are talking about.

Keep smiling my honey. Love Julie XX

Hi Keitha, 

dont worry about getting upset that is all part of this shit journey. and as for losing your hair , i had really long blonde  hair and it came back with a month after chemo black and really curly was weird its a grey brown now and just has a slight kink in it but i am just happy to have hair.

my 4yr old granddaughter Aaliyah asked me the other day "Oma why have you got grey in your hair ? i told her it's because i when i was sick and had my sore boobie i was given a pink lady medicine and thats why my hair is like it is now.  she said " hmm i dont think i want that meciden, i told her i didn't want her to have it it's yuky. we both laughed and pulled yukky medicine faces. 

there is an up side to all the yuk. we have good day's too. 

When I had my first bc diagnosis back in 2003 I went crazy with my research. I was 47 with no family history of bc,don't smoke/drink,eat fairly healthy,not fat etc etc. After reading so many books on cancer and talking with many women during my treatments there didn't seem to be an answer.I talked to all sorts of women with bc(tiny,Asian,European,young,middle aged,vegetarians,gym junkies ). The only common link was that we had all had 18mths or so of continued stress. This is my theory for the time being. Otherwise you could say that shit just happens!(my other theory!).So 7 years later I got it again,still EBC and now ,2yrs on, I'm fine.After Taxotere chemo it took 10wks before I saw any hair sprout.I didn't embrace being bald but merely put up with it -alot of whinging and pity parties! I got alot of my head stuff from www.headcovers.org -quite cheap and delivered to your door. I no longer question"why did I get bc?"I now concentrate on staying stress free,eating well and hopefully,exercising more. I sold my big house,quit my job and am alot happier.Now I'm not suggesting everyone do that but rather, make changes in your life to reduce stress. You have alot of treatment ahead of you and that can be daunting.Take one bit at a time and schedule in your fun days to look forward to.Chemo will be hard-won't sugar coat that one!But radiation,in comparision,will seem a breeze.I'm now on Tamoxifen and coping ok with it.You have great family support and ofcourse,us here so you'll get through it.Thinking of you,big hugs.

                                         Tonya xx

I can't imagine what it would be like without the Net. How do people manage ? I wouldn't survive without this support, I would go crazy.

Thanks for all your replies - I'm my old self again today. Positive hat on again. haha - going to need that !! Plenty of  hats anyway !!! Luckily it's winter so woolly hats are right in - yayy !

How do you all feel about wigs ? I'm thinking that for my job (which I LOVE and hope to be able to keep doing - it's only casual and I can chose when/if to go which is fab) I might need to have hair. I'm a front of house person in a theatre and a concert hall - I am going to experiment with sleek black scarves so that might work.

Has anyone tried acupuncture for relaxation ? I have used it many times over the years for a range of problems and I wonder if it might be helpful for me. I will ask my onc what she thinks of course but would be happy to know if someone has had a good experience.

I'm ready for bad days but also trying to think positive thoughts too so that they're as good as they can be.

Moving forward - sooner I start the closer I am to the finish.

huge love

Keitha

I saw this on a HER2 support site and liked it right away:

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"

Hi Keitha, I am sorry to hear that you do need chemo and will lose your hair. This time last year I was completely bald, having finished chemo at the end of March. It took awhile to grow back, but by the end of September I had enough coverage to go out uncovered. Last week I had my 7th haircut. It has grown back curly and not as grey as I thought it would be. I am colouring it again, and my curles are still bouncy. I have never had curly hair before, unless I permed it. My curls could last for another 12 months. I used to wear a selection of different head gear, but after a few months wore a wig mostly. I found an excellent wig which looked very normal ( check out my profile photo ). Also, my daughter, (22 at the time), said that she could almost forget that I had cancer when I wore my wig, because it was so good. That comment made me more inclined to wear the wig as it made others feel better. Good luck with your chemo. I was one of the lucky ones, who had very minimal side effects from chemo, so not everyone gets knocked about badly from the drugs. I hope you will be one of them. Love Chris xx

Thanks Chris, good to hear your chemo experience wasn't totally awful. I'll work with that !! I am going to have a look at myself in wigs, and a dear friend who is a designer is going to make me some special headgear ! So I'll be well covered whatever I choose.

If you hadn't said your pic was a wig I wouldn't have known !

******************

Di,

Indeed, Winnie often has just the right thoughts when we need him.

love

Keitha

Hi keitha,
I have the same tumour as you ER/PR and HER2 +. My lump was 3cm but thankfulluy sentinel node negative. I'm getting 4cycles of AC (had no 3 yesterday and feeling very ordinary) and then 12 cycles of weekly taxol and herceptin. Then 7 weeks of RT and hormone blockade.
I am amassing a huge collection of hats and have bought a few different wigs off eBay. I figure I might as well have fun with it and try a few different hairstyles! I also have a couple of headscarves but I feel like they mark me immediately as a chemo patient so I don't wear them very often.
The feelings you feel are so normal and I think we all go through them. I have had bouts of anxiety throughout this and I worry about all my aches and pains. We just have to be kind to ourselves and find the best way to get through it. I also have some lorazepam on hand for those really bad times when the beast gnaws at my guts and I can't kick him away.
Hope you're doing ok
xxDanxx

Hi Magicmum, Hope you are having a good day today. I am in the process of waiting and not knowing what the outcomes will be. I know I have invasive  cancer in both breasts but don't know to what extent and won't until my bilateral masectomy next thursday. I am sending you some positive vibes, because your fears are my fears and i guess all of our fears. This whole thing is like a nightmare that I wish I could wake up from except it is very real.  I find comfort in this blog site, so I hope you don't mind me commenting on your situation. Positive energy makes things seem better to me than they are. Lots of love xx

Hi Coco & Dan, welcome to my blog - more than happy to have you along. I get so much from reading other stories and from sharing my fears too Coco, it helps A LOT !!!!

Today was ok - I was working so that always helps to make the day go fast. A few down moments when I think about the what ifs and my tummy stars churning again, but nothing I can do to stop that right now. It's all a waiting game until I know how the chemo is going to affect me. Once the first one is under my belt I will be able to face the others with some sort of plan. bit like childbirth isn't it ? You can read all the books and listen to all the stories but until it's actually happening to YOU it is impossible to really imagine or understand. I am psyching myself into having a good experience with minimal side effects. :)

I wish I was younger Dan, then I wuld go for multiple fun wigs too, but I'm too old. (Yes I am !!! I'm not being precious - my job needs serious elegance) I will give it a try if I can find one that looks like my own hair, but otherwise I'm ok with scarves and wraps, I don't mind if people know why, maybe if more do they'll go and have mammograms and donate to research.

God luck to both of you with your treatment - and do keep positive, there's truly no point to anything else. If you like reading, have a go at The Power of Now. It's a very strong powerful book I'm working my way through. Yu don't have to be religious, but you can be if you want - it works either way.

loads of love

Keitha

Hi Keitha

I managed to get a wig that look like it could be my own hair it looks so good my husband want me to get my hair cut like it when it grows back... but I find it uncomfortable... I would recommend you wait till you are a 'nude nutt' before looking...and if you can do a 'look good.. feel good' workshop and try different styles. At the workshop I went to I tried a red wig.. felt great and I loved the way I looked but because I already had a wig didn't get it... I did however try a turban/head cover called a 'Byron Bay'... soooooooo comfortable.  I now wear it all the time. So it's worth trying different things...

good luck and have fun trying...

Trina

I think it is good to tell people. Initially I found that so very hard as I could see sympathy in their eyes and I hated seeing that. Now I try to tell a group of people or ask others to let people who don't know I have cancer that I have it. A little gutless but much easier to do. I finished work for this year two weeks ago and left on a positive note as I am a teacher so we organised a celebration day where the whole school went pink and the high school across from us. All the kids brought in gold coins and we had a pink sausage sizzle with pink bread donated by the bakery, lots of fun pink activities. One teacher dressed as Super Pink a super hero she created to fight the fight against breast cancer, complete with cape and undies and bra over t'shirt and tights. She was an instant hit. We  had face painting and craft work, obstacle courses and iced biscuits. At the end of the day we discussed breast cancer and cancer with our students and they shared their stories about friends and family who had been affected by cancer. All money donated went to the McGrath foundation. It was such a positive experience and enabled the kids to be a positive part in my journey.  I have a book of pictures to take with me to hospital and all of their letters and cards. I really am lucky to work where I do.

It really amazes me that I continue to find positives in this journey, so important to harness them anyway I can.

That's a wonderful story ! And definitely something to keep you going Coco, how lovely.

All of my friends and colleagues have wanted to know and be kept up to speed with what's happening and where I am so I have been filling them in. Last night I was at work talking to 2 colleagues about starting chemo on Tuesday, and both of them said "You are not alone, you have us, we are with you all the way whatever you need". One of them is a young man whose dad has bladder cancer, so his love and concern is deep and meaningful - and I love them all for it. I'm so fortunate.

I had a few good sleeps this week, but the last 2 nights have been dire. My mind just won't rest - waiting. I know that once I have one treatment down it will be easier cos I will KNOW what to expect. And there will be only 5 to go after that too- bonus !

One of my friends gave me a cute little black feathery hat, very chic. And several have promised to knit beanies. I am going to a LGFB workshop in a couple of weeks, I wanted to be ready. I am pretty hopeless with makeup so hints will be more than welcome, and if they have wigs to try that will be good too.

Keep on keeping on girls.

love

Keitha

I'm struggling to fight the butterflies tonight. It's so easy to tell myself to keep positive, but as Tuesday draws closer the dread is creeping in. Part of me wants it to be here NOW, to get it over with so I the unknown becomes known. Part of me - like all of us - wants this all to be some kind of nightmare that isn't happening.

:(

Start my steroids in the morning. It's all too real.

Keitha

Hi Magicmum,

Can certainly understand your nerves. I feel like I am in high school again waiting to get my rubella needle and constantly going to the end of the line  and now I find the line is finally at the end and I am next to get my bilateral masectomy. There is no more time, but in some ways that is such a good thing, cause this period of my life is in limbo and is stretching out endlessly. At this stage the type of cancer I have has not been defined other than to be invasive, So I don't know how concerned to be, crazy I know cause cancer is cancer and I should be concerned but should I be overly worried or just slightly concerned? So far on my journey my diagnosis has gone from bad to worse, so I am kind of expecting this to continue, but I would love it if after surgery they say well two rounds of chemo and that should do the trick and you can go about living your life the way you planned again.

I really want to know about the unknown. Good luck with all that you are dealing with my thoughts and prayers are with you. Lots of love Sue

Oh sweetie, I feel so bad being a misery guts when my surgery paled into comparison. I hope it all goes so well for you, and that they find you have no nodes involved, or minimal - and that you get a HER2 negative. It IS the unknown thing for us, it's so hard.When I'm feeling sensible I know that it's pointless over-worrying - it is what it is, and worrying won;t stop it or fix it. You just get the best advice, follow it and then hope for the best. Worrying causes stress and stress can be a danger all on its own.

We'll get there together, we'll hang on together. In a year, in 5 years, in 10 years we'll laugh and wonder why we were worried. And we'll be able to help others where we are now.

Breathe.

Have a look on the Net for the chillout song by Ze Frank - it really helps.

Chin up girl, we can do it.

love and hugs

Keitha