One year ago-to all my sisters especially the newly diagnosed

Robyn66

was when I had my baselin mamogram with "something" showing up on it. 

After the MRI's, ultrasounds, biopsies, a mastectomy, losing my hair, and chemo  I could fill buckets with the tears I shed and probably, if you counted the sleepless hours I spent I spent at least a week without sleep over the past year.

Now I am in the reconstruction phase which has become a little complicated but I don't care because I am not dealing with cancer anymore.

I had my first mammogram since treatment July 14 and it came out fine, my oncologist says its going to take time to get used to being well again.

The reason I am saying all of this is to my newly diagnosed sisters, this was the fastest year of my life.  I didn't think I would ever see it all be over with but it is (for the most part).  There is the "new normal" you have to learn to live with because, at least for me I will never have a "routine" test again without having my heart in my throat.  But I got through it and so can you.

So cry

Get angry

Break things

Rage against this monster!

You are so much stronger than it is!!

There are so many amazing women out there on this site!!!  They are always there to help you and make  you feel better especially when  you feel like you are having feelings that you "shouldn't" have. 

I never knew a group of women I will never meet could mean so much to me!!!!

Thank you,

and I really do love all of  you!!

Robyn

thenewme

Robyn

Wow! I'm about 6 months along in my journey, and a year seems like an eternity, although you're right - it is going fast! Thanks so much for the encouragement and inspiration!!



Good luck with the reconstruction!

Ainm

Robyn,

I've been reading this forum for the past number of months but never posted because I couldn't narrow it down to one of the topics. I have two days of radiotherapy left!!!  I was diagnosed in Jan, mastectomy with auxillary clearance 3 days after diagnosis, 4AC & 4T dose dense chemo and 15 fractions (dose dense) RT. In between surgery and chemo I had a staph infection in the mastectomy wound and spend 10 days on IV antibiotics. After 2nd round of chemo I had a Portacath inserted which thery weren't able to use until my last chemo as the wound of that became infected too and I spent weeks on hight dose antibiotics.  I was the unfortunate 1 in 50 who had a severe reaction to Taxol with unbelievable pain and discomfort which I had to be admitted to hospital for on 3 occasions.  At the start of all this one of the nurses told me I should allow about a year for treatment and then another year for recovery - I couldn't imagine it taking that long and now here I am with just 2 RT sessions to go and I'm almost nervouse of it all ending. I see my oncologist tomorrow and I know he will tell me that he is very pleased as he told me at the beginning that he did not see why I would not make a full recovery - but I knew nothing about BC then so I was lulled into a sense of security. Now I feel like I'm being cut lose and am quite scared - Your post has help me some but I still feel like the apron strings are being cut and I'm not sure if I'm ready for such a big step!!

Robyn66

Ainm,

I understand completely how you feel.  I was in severe pain with Taxol too.  I was such a contradiction because my life during chemo was a count down until it was over.  I had little rubber bracelets I took off after each treatment, I was just focused on it being over, and then at my second to last treatment my oncologist said they needed to decide IF I was going to need rads.  I had a complete meltdown in her office. I mean screaming that she couldn't just spring this on me at the last minute and I was supposed to be done.  Thank god my husband was there because I don't know how I would have handled it without him.  So I had to go through this whole other wait to find out if I needed to get radiation-which it turns out I didn't.  So I went through the last chemo.  I was expecting to be thrilled but basically had a panic attack.  I felt so vulnerable and unsafe and alone.  I did feel that starting on the Tamoxifen has made me feel secure again.  I am keeping the beastie away.  I wish I could give you more than that.  But like you had to get through this at the beginning one day at a time, I think sometimes you need to get back in to one day at a time mode.  I needed to use attivan again for a while.  It will get easier.  I promise. 

Love, 

Robyn

Ainm

Hi Robyn, Well I saw my oncologist today for the first time since chemo. I told him that I still had pain in my legs and arms since the taxol. He told me to take paracetamol for the pain on a continual basis as he was starting me on tamoxifen and that can cause muscle and joint pain too. He said I should keep the pain in check so that I could work up to at least a 30 minute walk everyday (ideal speed 3mph). Also I am obese and he said if I could lose weight it would improve my prospects. He said I have just under an 80%, 10 year survival rate, I'm not great with statistics but I guess this is quite good.

He said that in two years time he will test my ovaries to see if they are still functioning. If they have stopped he changes me to a different tablet which I will take for 5 years if not he checks again 2 years later and then changes the meds - but it looks like I'll be on meds for 7 years minimum. I am a little disappointed about this. I was trying to explain to my husband that taking a pill like this every day will be like a cancer reminder but I have decided to make this my 'quality of life' pill.

Do you still have residual pain from the taxol? Dr told me today that this could last for two years.

And so I continue on my journey but I am very happy to have met you and other people in a similar position. I hope we stay in contact - it helps to know that you like others can identify with me.

Take Care.

kbram

Hi Robyn,  I can't believe how alike we are.  I found out I had BC on 8/19/08, less than 1 cm, IDC, stage 2, 1/15 nodes, ER+/PR+, HER2+.  It is hard to believe I found someone so close to my diagnosis!  I am also in the reconstruction process and will have my exchange surgery on Friday, July 31.  As much as I am looking forward to it, I do dread having another surgery.  This will by my fifth surgery in ten months and I'm just tired.  Good luck with everything and I will check on you later.

Kathy

nelia48

Your post was so inspiring and good to read!  I, too, am just a year away from my diagnosis, and it was a fast year for me, too.  It was sooooo hard going through the chemo, etc.  But as I look back, it did go quickly.  It's hard in some ways to put it all aside and "go on with my life."  It was soooooo intense for so long with emotions that I never thought possible!  Sometimes I have these minor anxiety attacks with all the "what if's" going through my mind.  But I have to come back to the fact that life is daily, and I am only given today.  Tomorrow is never a guarantee for anyone.    I'm just so thankful for the treatment I got, that it worked for me, and that I, too, am cancer free right now!

Robyn66

Ainm- I am lucky in that I have no residual pain from the taxol but when I was in pain NOTHING helped.  I just suffered through until it was done.  I am lucky that I have had no side effects from the tamoxifen except from some very minor hot flashes but I am keeping my fingers crossed.  I hate it when they give these 5 and 10 year survival numbers like that is all the time you have left.  We have a great chance of living another 30years easily!  I have decided that I am going to make it until I am at least 100.  The way I look at it is I have decided I am going to live forever, so far so good!!!  I am here honey if you want to talk.

kbram- I think we spoke briefly last year.  I was diagnosed 8/14.  Of course my reconstruction is being a pain.  I waited three months (during chemo) before starting fills because I just couldn't handle the two hour trip into Boston twice in one week at times.  In the mean time, the expander moved around and folded over (just making my ps SOOO happy) so when he did the first fill he wasn't sure if he was going to be puncturing it.  Well sure  enough when I went for my third fill the thing had been leaking so now I have to go have the expander replaced.  Its supposedly not a big deal.  Just a 1/2 hour surgery but I am DREADING being knocked out again.  I just hate the idea.  I hate having to do do anything extra but of course I would be the one to be difficult!!!!!  Good luck with your exchange surgery!!!  I am so glad you will be all done!! I can't WAIT to be there myself!!!

nelia48-I know what you mean.  I think we all just have to appreciate where we are now and keep up with our check ups and deal with it as we go.  There is nothing else we can do anyway.  Funny how I can talk like that now, but get me near a hospital and I want to THROW UP because of nerves!  I am just having faith that there are new treatments every day so if this does come back some day there will be something better and stronger ready to kick its ass again.  I was told all through this how much better things are than they were 10 years ago.  My docs are out of Dana Farber Brigham and Women's in Boston and they told me that there are a lot of things coming in the very near future.  I think we are lucky to be stuck with this now if we had to be stuck with this at all.

Love to all!

Robyn 

London-Virginia

Dar Robyn and everyone - this is a lovely thread.  Thanks so much for sharing your stories.

I am still near the start of my journey, but this thread is most encouraging so thanks.

NELIA - you made a lovely post to my thread when I was very worried about being able to get back to work.  The great news is that I did a second interview today and very well might have a new job shortly!  Girls, the story is that my surgeon had frightened the c**£$p out of me by saying I would be out of it for 12 to 24 months.  Thanks a bunch, really helpful.  Later on though, my Onc said I should go back to work soonest and is quite happy to write a letter saying I amfit (he offered, I didn't ask).

I have recently started Femara and am doing ok.  Chemo (FEC) soon.  Then I suppose RT.  Also, I have a mirco foci in one node so I guess it is goodbye to my other nodes.  But, I feel well and am  beginning to get my confidence back.

And threads like this really help, so thanks to you all and as they say on startrek,

Boldly Go girls!!

bethr

Robyn....

My sentiments exactly..   I don't know what I would have done without this site.  All of the women are an inspiration to me.  And I thank God for them.

Take good care all of you wonderful women....l

Beth

OneBadBoob

Wow!   I cannot believe it has been over two years for me!!!!

Now, chemo and reconstruction done long ago, on Arimidex with only minor aches and pains--

Thanks everyone!  To all the "oldies" who showed me it could be done.

And to all the "newbies" you can do it!!

Warm cyber hugs to all!

kjbell

Robyn-you are right, the year goes by sooo fast. For all that we have been through it is amazing to look back and realize that all the tough days are behind us. I too will be trading in my t/e in the next few months, then I will really feel like it is over.

This site has been a life saver. I still come here all the time. You feel like you know everyone. You want to keep up with what is going on with everyone.