Stage 2 Sisters Club
Comments
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Started the arimidex this morning, so am thinking positive thoughts of low/no SE. Back to work Mon for half days. I stopped there today and it was nice to see people- I have had a few comments here and there about glad youre all better and thats over, etc. I didnt say much- but- if only they knew! Yes, so much hard stuff is behind me, and treatment with no chemo/rads is great- but don't feel like Im 'ok'.
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People do not get it unless they have been through it themselves.
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Joe- how did Taxol #2 go? Hoping it was same as #1.
Aviva - you are the Queen of Oncotype! Never heard of such low number, good for you. I am starting Arimidex next week...hoping for a break in SEs. Keep posting please.
Liz - I am in SD. Thanks for good ideas. I need to think about this a bit more.
I keep thinking I owe responses to some members but chemo-brain is interfering with memory!
Hugs to all, Nisa0 -
Wow so much activity on this thread. Us stage 2 sisters are a chatty bunch. Welcome to the newbies, here is to hoping your treatment goes smoothly with minimal SE's. As for treatment being a distant memory EVERYTHING is a distant memory thanks to chemo brain lol.
I try to pop in as often as possible (may not always post) but definitely reading. Please know you are all in my thoughts and prayers each and every day. (both the "newbies" and the "what nows".
Happy Hump Day!
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Hey! Good to hear from you. Please share what are the good things and the challenges of having returned to work full time. Preparing for that myself. A bit concerned at display of fatigue and chemo-brain!
Last week I gave up after 20 min of trying to upload a photo I wanted to PM to Aaoaao. Are there good instructions somewhere? Thanks, and e well. Nisa0 -
I returned to work after 9 months off and I couldn't remember anything! Everything looked foreign to me and I couldn't remember the easiest tasks. Of course there's been upgrades to the computer system while I was gone so I couldn't navigate the computer either. I felt like a new employee again but it slowly came back. Definitely had some lingering chemo brain!
Nisa, I switched onco after 3 treatments. I couldn't handle it anymore. The first onco was so negative and lacked the compassion that you mentioned. I couldn't picture 5 yrs worth of follow ups with her or even another appt so I asked my breast surgeon ( who was extremely compassionate) for his recommendation. I love my new onc now. I was able to transition to a new location without any disruption to chemo treatment too. So worth the move. I'm happier now. Consider asking someone on your care team like surgeon or nurse who they would recommend.0 -
Hi Mely. Nice to hear things slowly returned to normal at work for you. Next week it will be 5 months for me - not sure I am ready but will give it a try. You were so courageous to switch docs in the middle of treatments. I dont think I would have had the mental energy to make the change while getting chemo.
I have been a bit puzzled about this issue of lack of empathy. Not taking it personally because I know 2 other patients who feel similarly. But llike you, I have been asking myself what my needs are for the next 5 years. And would I want to be treated at this super-busy office should I have a recurrence? I researched patients reviews about my onco, and other 3 oncos in the area, and was alarmed at the pattern of discontent. Then I did a bit of research and found articles on burnout among oncoloigsts. The stats are pretty alarming too. I tell myself that at least I have an amazing PCP who is the best doc I could ask for!
Be well, and hope work keeps getting easier and more fun!0 -
I have found that picture uploading is easier if you transfer your pics to a photo site and then copy and paste from there. I use Shutterfly because I have done some projects using that site, but I know some use Picasa or Photobucket.
I was surprised that all three of my docs (BS, PS & MO) were very empathetic, and were huggers. I expected to feel emotional distance from them because of the stress involved in their jobs - BS and MO in particular - PS does non-cancer related work, although a large component of his practice is BC recon. My expectation was that they would be distant and reluctant to emotionally engage to protect themselves, but I was wrong - I think these individuals have taken on this field because they were called to it. I would imagine that this is not the case everywhere though! All three docs have also been involved with making sure that any questions or concerns that my husband and children (adults) had were addressed as well. I realize how lucky I am in this regard, but I also have supreme confidence in all three in terms of their management of me as a patient. That said, I would have been willing to sacrifice bedside manner for superior medical care, I am just fortunate that I didn't have to. I have found more burn-out among the oncology nurses though - several have discussed the need for a break and a different type of nursing, then a return to oncology. I know for me as a Her2+ patient - I spent 15 minutes with my doc on an infusion day, but I spent 7 hours with the nurses! Over the course of my year in the infusion center I saw many a nurse get in the recliner with the patient and hug it out - they dealt with a lot of emotion and took awesome care of all of their patients.
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Both my oncologist and plastic surgeon were wonderful....compassionate, and eager to answer all my questions and ease my concerns. My breast surgeon, not so much. I cringe when I have to see him, and luckily, its just once a year now....(LOL). I agree that oncology nurses and especially those that work in the infusion rooms are angels........it takes a special person for sure!
Feeling a little blue today as I found out another friend has passed away from breast cancer. She was stage II at her original diagnosis 3-1/2 years ago, diagnosed with metastasis in Janauary and passed away on Tuesday. She was 47-years-young with husband and four beautiful children, the oldest at 16! CANCER SUCKS! Please keep this family in your thoughts and prayers!
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Wildruma, so sorry for your friend. She was so young. How heartbreaking for her family and friends. Cancer does suck.
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Wildruma, so sorry about your friend. Last year, two of my local friends died of cancer within two months of each other. Both at the age of 53. Hard stuff....
About posting pictures; here is something I just learned to do yesterday: if you have a picture posted on Face Book, you can right click on that picture, go all the way down to 'properties', copy the whole URL, come over to the BCO thread you want, click on the little tree icon right above where you type, copy the URL in, and click 'insert'.
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wildrumara - so sorry to hear about your friend, and she was so young. This disease is so unfair and cruel. My kids had several friends in middle and high school that lost a parent, I always worried more about the kids going forward than the spouses, it is hard enough to lose a parent when you are an adult.
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Wildruma - I am so sorry about your friend. I can relate. I lost a friend to BC in June. I was waiting for her to call back when my son shared the news, it was a shock. I have not been able to delete her texts yet.
SpecialK - You are lucky that all your team is both competent and compassionate. That describes my PCP, and my surgeon. Competency is so much easier to measure than empathy. Thanks for tips on uploading pics.
Ruth - thanks also for tips on uploading pics, will try that.
Joe - How are things going for the wife?
Wishing everyone going through chemo a weekend free of SEs!
Nisa0 -
Good Morning all.
When I hear of another sister taken by this horrible disease it shakes me so much. I try so hard to stay positive and trust in our Lord and I am encouraged by how so many of you wonderful women are moving forward and doing well. I cant imagine a world without my soulmate. Arghh! I hate this!
Nisa- Round two was not as good as round one. I think it was componded by the fact she pulled a muscle in her back so add that to the Neulasta bone pain and whammo. Not a fun weekend at all for her. Neuropathy started in the feet, not bad but its there. She told me this morning she was feeling better and planning to get out. Thanks for asking. Two more to chemos to go! I am starting to feel the anxiety of ending treatments and starting the rads.
Can I ask the group? How do your husbands cope with this? I never stop thinking about it!
Thanks, Joe
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Joe, my husband suffered a lot. I caught him quietly crying by himself a couple of times. :-(
He wanted to be strong for me and I was very worried about him. In one of my very down moments after diagnosis I told him if I passed from this I would want him to move on. I had early stage cancer, so that morbid statement wasn't exactly in touch with reality, but at the beginning our minds go everywhere.
But, as things settled down, we both got through the hard times and are now pretty much 100% back to normal. It DOES get better! (((HUGS))) to you and your wife.
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Yorkie- I think I cried everyday for 3 months! I am doing better as she goes through treatment. Her diagnosis is very similar to yours. I know its early stage and I try to keep that in mind but I agree about how we tend to think the worse. I have 5 close friends and 1 cousin who have gone through this and they are well. That helps! I pray for all of you each and every day!
Thanks Kansas!
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Back at ya, New Jersey! We're all here for each other.
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JDB53 - There were points at which I think my husband was worried - I had a great deal of surgery that stemmed from a situation with healing from my BMX, and it has presented reconstruction issues, which are thankfully now resolved for the most part. I am not particularly emotional by nature, and neither is my husband - this is not to say he is distant or unsupportive - just the opposite. I have never cried regarding my diagnosis (yes, I know how strange that is, lol!) and he has not needed to console me at any point, other than occasionally telling me things would work out eventually. I did not tell any of my family, including my husband, that I had a lump or a biopsy, and did not tell any of them about the breast cancer until after I was diagnosed. Finding out that I was Her2+ and node positive were hurdles to jump, but I just took it step-by-step. I am a military wife, we have been married for 30 years, and I feel like that experience has allowed me to get through this process without needing much emotional support, or breaking down - I have seen worse than breast cancer. I have also lost both my dad and brother to stage IV cancer. I know my daughter, 21 at the time of my diagnosis, cried - but I don't think my husband has. He has a couple of colleagues at work whose wives has been through this - they always asked him regularly how I was doing, then they asked him how he was. I think that was nice for him - they understood.
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SpecialK- You are very special indeed! I look to you for advise and strength all the time. Do all of you understand how wonderful you are for being part of these threads and comforting one another while fighting you own battles. I have talked to husbands but i find more compassion and comfort in women.
You have all touched my heart and I will never ever forget you all!
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JDB53 - thank you, that was a sweet compliment! I don't feel like I am special - I am just a determined person who has tried to get through this experience as normally as possible, and who tries to offer support and corporate knowledge where I can. I am so very glad I can be helpful to you. I was the beneficiary of the wisdom and kindness from the members of this site when I was new, so it is the least I can do!
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Hi, stage IIb
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welcome teejay.
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hi tee-- lots of support here. Welcome
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you guys are all awesome and brave. I am at home recovering from pprophylactic oopherectomy. Surgery itself was not bad at all except for the gas pumped in, so short term I think I have a very smooth easy recovery. I'm not sure about the long term though, we shall see. Since I am 44 and technically premenopausal my oncologist is keeping me on tamoxifen for the moment.
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Hi Teejay - Welcome! How are you doing? Is yours a new diagnosis?
Planet bananas - I hope this your last surgery, and that you fully recover soon.
Joe - Yes 2 more chemos for you guys, hope time flies for you and wife. Sorry about rough weekend. I agree with you that SpecialK is really Special!
My husband is a pragmatic guy who does not allow himself displays of emotions. He does thoughtful things like bringing breakfast to bed during chemo, keeping on top of my meds, making healthy dinners, and going to my appts but never asks about my fears or talk about his...and I wish he did!
Hugs to all, Nisa0 -
Ahhh.....I think back to two years ago and remember how very scary it was, for myself and my husband!! But, because of these boards, I was able to put things into perspective after reading everyone's story, plus the tremendous amount of support I received here was amazing from so many of you! I allowed me to never say "why me".....rather "why not me" to people after reading countless stories on here!.
I think a diagnosis when you're still fairly young, with younger children, puts an entirely different twist on things though......the fear of leaving your children can be overwhelming.........
My husband was absolutely amazing. He was strong for me and very pragmatic, which was what I needed. But, held me close and talked me down when I'd let myself go to that dark, dark place.....
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Thanks to all for sharing. Wildrumara, I agree about children. Now for us we are a little older 58 and 60 and we didnt have children. Although I think we are still children sometimes, lol. We have been together since high school so that to me factors into my reaction to this whole mess. I think I've learned that everyone's situation is different but yet the same if you know what I mean.
But your so so right! These boards have helped me so much get through my initial shock and to move forward and get back to my old self and to be there for her in anyway I can. So thanks again to all.
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Hi everyone...
I have been reading your posts a lot. I haven't reached out very much, but today is one of those days....
I cant address anyone specific, because YOU ALL have touched me or had an impact on my days without even knowing....
The loss of a friend, the concerns of an awesome husband, the SE's, chemo struggles, hormone, tests,surgeries and above all-the awesome open support,advice and even just an every day "hey guess what" or "how are you?"
I am a Mom of 2 young daughters and have an awesome supportive husband and family- but often go to that dark dark place- when I look at my sweet girls my heart breaks for them.
I just finished all my chemo 4A/C and 4 dd of taxol and start rads oct 7th. I am 9 days out of my last taxol and still don't feel good or right. How long does this last? I am so discouraged...0 -
Hi Julie...... You ARE on your way to feeling better sweetie......trust me. It certainly doesn't happen overnight, especially after all you've been through in the last several months. I remember saying on the day I was diagnosed, which was August 23, 2011, that in one year, this will be behind me. I knew enough about myself and my personality to say that its going probably going to take me at least one year to feel pretty good again, physically, and emotionally. So, don't be discouraged that you still have dark days. They will still happen, but they will lessen as time goes on....trust me.
I used to spend hours researching and reading on this site and many others.......in some ways that was good, but in other ways it was bad. I am one of those people who NEED TO KNOW! I questioned everything that my oncologist suggested and it really wasn't healthy for me to do that. At some point, I had to trust my team and trust their decisions for me. I think that was the hardest part for me. I did a lot of comparing because of this site. Try not to do that, if you can.
Enough about me though......again, please give yourself time to heal. Soon enough you will be starting on anti-hormonals, correct? Try not to spend too much time reading about all the SEs that other women have experienced, because you may do just fine on them!! Its been pretty pain free for me.
I have three children. They were 13, 10 and 8 when I was diagnosed. My daughter (the youngest) took it the hardest. She worried a lot and often times, struggled in school if her feelings were hurt, etc... Thankfully, her teacher was very attentive and she did get extra TLC that school year! Hope your daugthers are doing well? It is incredibly hard to keep a happy face on for them all the time! I used to think that it wasn't right/fair to be going through this at my age, with kids this age, but in the end, I know the experience made my kids stronger and more resilient. Now I can look back, two years post diagnosis, and see all the positives that came out of being diagnosed.
I still think about cancer often. I just lost two friends in the last six months to breast cancer and another friend was just diagnosed stage IV Sometimes, I feel like all I think about is disease and death. But, I also know that there is absolutely nothing I can do about it. I am not in control and I need to live my life......
All the best to you......just know you are not alone!
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just-julie - I did not have rads so I can't address the timeline for feeling better other than to say that a number of us on the TCH and triple pos threads seemed to turn a corner at the 6-8 week PFC point.
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Happy Hump Day!
