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SamzRusty
12 years agoMember
12 months on...
Well, it's been 12 months today that Angelina Jolie told the world about her BRCA gene & bilateral mastectomy, it's my annaversary too.
22 years ago today I lost my 18yo brother to cancer. I was thinking about him as I lay on a table at PRP Westmead having an ultra sound on a lump in my breast. I just KNEW it wasn't going to be good & it wasn't. A biopsy later that day gave me my cancer diagnosis.
Lumpectomy told me it was Triple Negative BC & a blood test gave me my BRAC1 diagnosis. Since then I've done 6 months of chemo, oopherectomy, hysterectomy, bilateral mastectomy with lat dorsi reconstruction & topped it all off with a clear pathology results 2 months ago.
Don't think I could have done it without the support of BCNA....THANK YOU from the bottom of my heart :)
Sam xoxoxox
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19 Replies
- SamzRustyMember
45 days now Michelle! Condo is paid for, cars are booked & tickets to the theme parked are in the mail....CAN'T WAIT! NY....how exciting....and cold :)
Sam xoxoxox
Sign in to react to this post - Michelle_RMember
The platinum I had was Carboplatin, which might sound more familiar?! Know what you mean about the eyes - apparently the watering means you have dry eyes, so I have to keep the Refresh drops handy, especially at night if I am watching tv. It never stops, does it? - but at least it is manageable! You must be gearing up for your holiday to LA - I am off to NY in September - can't come soon enough! Michelle xx
Sign in to react to this post - LeonieVMember
Thanks for sharing - its good to hear that others have similar issues (not sure why that is so reassuring because I surely wouldn't wish any of this on anyone!). I'm on a dose dense cycle so only get two week break between chemo. Hoping that i'll pick up in the next few days. Definitely better today (Day4) than previously though still wouldn't feel up to driving anywhere yet! Which is a bummer.
Thanks so much yet again for all the information. This is goign to be a bit harder than I thought (I had visions of reading lots of books, doing a bit of work here and there, sunning myself in the winter sun....that sort of thing...). Silly me!! Ah well. It will mean i get to do those things for years to come!
Sign in to react to this post - SamzRustyMember
Yes I did get the blurry vision & very watery eyes. I wear glasses for reading, but went to the optometrist & had them make me a weaker version of my regular prescription & I wore them all the time. They also protected my eyes from the wind once my lashes fell out.
I'm not familiar with Platinum.....sounds good though. This 1st week is the worst, next week you'll be feeling better, then back to normal(ish) week 3....just in time to cop another dose. Glad you're managing it OK :)
Hugs, Sam xoxoxox
Sign in to react to this post - LeonieVMember
Thanks so much sam. I'm on dose dense AC, and it was goign to be dose dense Paclitaxel, but has now been changed to standard Paclitaxel (weekly for 12 weeks) with Platinum added at weeks 4, 7 and 10. I had my first chemo on Friday. The nausea and headaches were not pleasant. But, I've survied and its Sunday. I have noticed quite blurry vision and generally wonkiness in how I'm moving. I've tried a couple of short walks and they knock it out of me. But i guess that is to be expected! They've given me the bone marrow injection on Saturday and I've started to get a bit of back pain...
But really I'm going ok. I bit anxious about what is happening and not sure what is to come. If you or anyone has any info on the blurry vision - that would be great - as it certianly is contributing to feeling a bit unsteady on my feet!
You're right Sam - we are touch little cookies! Thanks so much for sharing your information!
Hugs le xoxoxox
Sign in to react to this post - LeonieVMember
Thanks so much sam. I'm on dose dense AC, and it was goign to be dose dense Paclitaxel, but has now been changed to standard Paclitaxel (weekly for 12 weeks) with Platinum added at weeks 4, 7 and 10. I had my first chemo on Friday. The nausea and headaches were not pleasant. But, I've survied and its Sunday. I have noticed quite blurry vision and generally wonkiness in how I'm moving. I've tried a couple of short walks and they knock it out of me. But i guess that is to be expected! They've given me the bone marrow injection on Saturday and I've started to get a bit of back pain...
But really I'm going ok. I bit anxious about what is happening and not sure what is to come. If you or anyone has any info on the blurry vision - that would be great - as it certianly is contributing to feeling a bit unsteady on my feet!
You're right Sam - we are touch little cookies! Thanks so much for sharing your information!
Hugs le xoxoxox
Sign in to react to this post - SamzRustyMember
Hi Le,
You need to get back to the Topic Page, go back to the Reconstruction home page, then towards the bottom you'll see the link for topics, click that & on the right side of the page you'll see all the links to all our topics, Photo Stories are there, or click here :)
http://www.bcna.org.au/network/groups/61026/blog/75024
I started chemo almost 12 months before you....25th June. As horrible as it is, it may not be the nightmare you hear about either, the meds they give you to combat the chemos side effects are really very good. Do you know what cocktail they are putting you on?
Did you end up finding a plastic surgeon yet? It's still early days, I didn't start meeting with them (I saw 3) until I was through the 1st 3 months of chemo. They will help guide you in what type of surgery best suits you.
Sending you big hugs for next Friday, I'm here if you want to chat about anything. TN & BRCA1 sucks....but I tell ya what....we're tough little cookies :)
Sam xoxoxoxox
Sign in to react to this post - LeonieVMember
Hi Sam, I hope you don't mind me asking...how do we view the photostory? I'm TNBC and BRCA1 as well - just diagnosed 1 May 2014. Have had a lumpectomy and lymph node clearance, and about to start chemo on Friday 27th. After chemo they want to do a bilateral mastecomy. All rather overwhelming! I'm really interested in other peoples stories. Anyway, I haven't quite figure out how to use the BCNA site fully - so any advice would be great! So great to hear that you're doing well and feeling really positive. And gosh - good to hear about those other women you met as well! Very positive! Best wishes, le.
Sign in to react to this post - SamzRustyMember
Hi Diane,
Dr P is still working, he did the lady across the hall when I had my op. I didn't gel with him though & went with Dr S.
I was at a dinner on Saturday night. I met 2 women, both TNBC & BRAC1 (same as me). Both 7 & 8 years cancer free....geez it gave me a boost. I'm very positive anyway about my future, but to have these 2 standing with me was fantastic!
Hope you're well, I have ALL the juicy pics on my photo story.
Hugs, Sam xoxoxoxox
Sign in to react to this post - DeeayMember
How did you find Dr P? I must look at your photo story/
I heard rumours he's retired?
PS I lost my brother to cancer too!
x Diane
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