How Do you Deal with This
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I recently wrote a letter to my daughter - it was something they asked the parents to do for the girls for their senior retreat. I of course wrote the stuff about how proud I am of her, what we've dealt with, etc....., but I decided at the very end to add a few life lessons. One that I've lived by for a long time and included in her letter is "I'll cross that bridge when I get there". It's a waste of time to worry about IF something will happen, worry about it when it's time to worry, until then live your life. It doesn't mean I don't plan, I'm OCD, everything is organized and planned in my world, but what it does mean is to live and not to worry about the "what if's" in life. Also, I saw that People magazine in the store today, didn't even pick it up. I stay away from anything I know will upset me. It's not that I don't feel compassion for others, but reading something like that will do me no good. And........... If I'm in a funk, then it puts everyone else around me in a bad mood.
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I also saw "the" magazine this morning waiting in the check out line.
Didn't even pick it up! Nope, won't do it.
When I was going through treatment, anything that had the word cancer, especially breast on it....I looked at. Trying to inform myself. Like Womans Health mag for instance or Health magazine
There was always a sad story, then I would try to figure out what stage the woman was ect...and treatment that she had, going by her year of diagnosis. It got really tiring, AND it would bring me down.
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My family is concerned that my friends that I have here online could make my state of mind worse especially when one passes away. But i get comfort from talking and laughing and crying with everyone who have all been tested like i have.They now understand and don't bug me anymore.My husband even tries for funny photo opps when we are away just for you guys to enjoy and laugh at.
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I remember my husband and I were going away for a long weekend for our 15th (so 4 years ago - 2 years before I was diagnosed) anniversary. I bought a few magazines for the car ride and since it was October they were all breast cancer awareness and pink. I remember crying in the car on the way to our weekend because of all the sad stories - bc scared me then too!
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You know it never scared me until the day I found that lump, completely by accident. I didn't think I was at any risk whatsoever. I was too young and, to my knowledge at the time, I had no history of bc on either side of my family. All I ever read about in every magazine article on the subject was all of this BRCA stuff, and what great risk you had if you were BRCA+, and how you might want to get tested if your mother or sister had been dx with bc. I felt so stupid after I found out the real statistics and other risk factors I'd never even heard of before.
Now I'm like most of the others. I don't even pick the magazine up. I keep a positive thoughts list for those times I feel scared or down so I can read it to lift my spirits and hope when it's hard to remember all the reasons on my own.
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Crap Pure,
I know exactly what you are talking about. I can go for long times and not think about my mortality and then that kind of s#$t (can we curse here???:::)))) knocks me down too.
What's been getting to me as of late are the Avon and Komen Walk TV ads. I live in the Washington DC area and we are hosting BOTH events this year. Komen had not been here for the 3 day in several years. Now don't get me wrong, I think they are both fantastic for the cause, and I have participated in the Avon Walk for 4 out of the past 5 years. But sheesh, every other commercial is either one or the other, and they are the same commercials over and over again. Komen has a particuarly sad part in theirs where a young woman is holding a pic of her Mom who passed away from BC and is talking all teary eyed about her. It just makes me think of my daughter and if she is going to have to feel that way sometime sooner than later. GRRRR. And Komen isn't until October! Am I going to have to see that same commercial every time I turn the TV on till then??? It's bad enough having my bald head remind me constantly of this disease.
Take care Pure,
Love,
Sharon
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I hesitate to even say this....But, I think the more that BC has a face, that more people will recognize what a terrible disease this is and how it can hit anyone!!...I too would rather read the more positive articles, but those are even less active on this cite....BC has no prejudices and can hit anyone!!..Maybe this will help those that are not faced by this to take it very serious and hopefully learn more about BC and try to be more pro-active...
Pure, you have been through so much, with all that you have faced, but boy do you seem like a fighter!!!..You just keep up that attitude and give it all you got, there are somanywomen who are going to learn so much by your posts for many many many years to come....Keep up the good work!!!!
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Tks SO many Women-I see your from Mettitt Island. I am from melbourne beach and also grew up in Satellite Beach.
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Sharon I saw that commercial last night and my whole fmaily was just silent after seeing it-I love when the girl holds up her moms sneakers and says how she wore her dead moms sneaks for the walk. That was a real upper. Since this battle is part mind part body I am going to start putting more effort into the mind part. I really need too.
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Pure, it's beautiful over on the beaches here, I try to do a 3 mile walk 2x a week and am getting addicted to it...I should have been doing that before since it is just a 5 minute drive...I love the secludedness of Melb. beach.....We drive that way when we go to the Melb. mall just for the ambience, also love to go to Sabastion, just went to an "Eddie Money" concert at Capt. Hirams....
My husband is one of those Kennedy Space Center workers whose jobs are to be eliminated if they truly close down the Space Center in Sept. this year..What in the world is our government thinking, not having a Space Agency, what are our kids even going to school for if there are no jobs for some of these out-of-this-world scientific minds?....This place will be devastated!!!....He may have to take something out of our area, but we love it here and will keep our home.
I do think that you are an inspiration for somanywomen on this cite, like I said, keep up the good work!!!!!!
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Cheryl: Thanks for the hug....right back at ya! I guess there are the ups and downs of this disease. I do believe I'm feeling a little down because of the changes my body is undergoing with the ooph and Femara this month. I'm not trying to cast negativity or anything. No doom or gloom, just the reality of this darn disease.....the good, the bad and the ugly. For the most part, I laugh more than I cry. I just had a down day. Feeling better. Thank you. Jean
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Pure
I have read so many of your posts and can relate to them all and understand and just your first line is so spot on, how we can go for awhile up and then something knocks us down.
I have been one of those that gets obsessed and paralyzed many times.
Two suggestions:
1. Like you said this is more than a physical issue, it is an issue of mind and soul, work on healing your soul as well. The most help I have gotten is working with a therapist that is very spiritual in nature. I am 17 years in the medical industry and very much a believer in Western Medicine but also believe we have to heal our soul so it finds a new course of living and healing. I have been seeing a lady that works on cranial sacral massage and polarity, at first it sounded very obscure but she is part of very prestigous fertility practice here in PHX and she is well known for helping ladies being able to work through infertility issues and health issues of the mind, body and spirit. I will tell you that is what I have been concentrating on since all of my treatment has been complete and it is very helpful. (it is part of the healing) Daily meditation is also part of what I do to help
2. While still in treatment I would take lorazapam just to get some relief. I am sure you are doing all you need to do physically and your treatment sounds like it is very thourough, so now work on your mind and soul.
If you can read Eckhart Tolle "the power of now" it helped me immensely!!
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Its really strange, but the last two weeks we were moving our business and I really didn't have time to think about what is or isn't going to happen to me. It seems like if I have something to look forward to or am just too exhausted, the beast doesn't take over my mind 24/7.
Jen, you will get thru this tough patch of thinking. You are a fighter!!
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I think those stories are of course a little tough to read however.....
I know so many people now that are doing well and they were all stage 2 and 3....and many years, many years out. No stories written about them.
Like others have said....these are one off stories and have nothing to do how we will individually perform.
I did everything I could to fight this disease.....everything. I have to be content that if it comes back I did everything I could have.
I heard the story too of the two people who died in the snow storm this week....and I come to the same conclusion....only God knows when our day is up. Every day I wake up and open my eyes I say a quick thank you to God that I will see my kids another day and I feel good.
Jacqueline
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Illene and Jacqueline-being so far out-do you find that you now hope for the future, and don't get taken down by your thoughts any more?
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mmm5-tks for the advice. I actually own that book from pre diagnosis life-I need to reread it though!
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It was horrible in the beginning.....I was constantly in a tailspin the first two years because everything I read told me there was such a slim chance to make it five years.....One that sticks with me is that once you hit a 5.5 cm tumor you had a 19% chance of being alive at five years....well mine was 8 cm. It was very tough to read all the info on the internet and not feel so doomed OR how could I possibly think that I could be part of the 19%. I didn't buy any new clothes or shoes. Could not think past six months.
I am married to the best guy in the world (sorry girls, smile) and he was a godsend. Could not have made it the first two years without him. He would continually pick me up when I was down.
As time went on I thought less about the dire situation that I was in.....obviously hit the five year mark....and now plan out much further.
I want to believe that if and when this cancer comes back....there will be an arsenal waiting for me. The longer I get out the more that becomes a reality vs. a hope.
We have all been where you are.....and soon you'll be where some of the rest of us are....and things won't be nearly as daunting for you either.
Plan for a long happy life and don't waste these moments now.
Jacqueline
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Pure- I have days like you as well. I too was sadden about the girl from the show Survivor. I thought if that could happened to her it could happen to me too. I have thought about her a lot. Although I think the story is sad, I think that it brings awareness to the public about bc. Before her death she was doing things in the public to help raise funds and awareness about bc.
Like Maryiz wrote- not many people really understand what bc is all about. This goes for my friends, co-workers, etc. (they) just think if you can just get through surgery, treatments (chemo + rads) then your home free. They don't realize that there are different forms of bc, stages, grades, and that it can SPREAD throughout your body. If it was just that easy to cut it out and if we were guaranteed that it would not spread after treatments then that would be wonderful! Even my office partner said something to me recently that made me wonder if she even understands bc (even though she had it 10 years ago at the age of 47). She was one of those people that said "Once you get through your treatments you'll be fine!" I'm sure she meant well. When I asked her about her experience -She simply stated "I have put it all behind me". When I asked her what stage her bc cancer was she could only tell me she was stage 1 with no lymph node involvement. She could not recall her grade, etc. She didn't have hormone therapy, etc. She could'nt even understand why I was going through so many scans etc. I too take comfort coming to the site (where I feel support by other's who have the same worries, hopes, etc. and because I feel like my friends, co-workers and even my twin sister really don't understand (what we go through- physically, emotionally, mentally).
Jenn3-I am a lot like you (OCD) in ways that I've always been one to plan out everything and to have everything in my life so organized...One thing I have learned about life (since dx) with bc. You can plan out everything your heart desires but suddenly when you least expect it BAM!!! Your life can forever be changed! My husband and I were together 5 years before we got married (1 year married) and we planned everything out and immediately got pregnant as planned...and then at 8 weeks I found my lump and lost the baby at 9.5 weeks. I just turned 39 and fear that we will not be able to have a baby dur to age, chemical menopause (at least for now) and because I can expect to have future treatments after chemo (Herceptin & Zometa-as a preventative). I wonder if this disease will spread to my body before (if & when I get a 2nd chance to get pregnant) again! I sometimes think it would be very lonely for my husband not to have a child and if something should ever happen to me because of this disease.
everyminute & Merilee- I have never been one to "live in the moment" but I am trying too! It's like Merilee wrote "none of us our guaranteed" I heard in the news recently in Toronto a woman and her daughter were killed by a reckless driver. The woman had bc and just completed all of her treatments. It just made me think! I am so focused on the possibility of dying from bc (there's a good possibility that I may not). Many of us can relate that bc takes that emotional security away. Before my dx I really didn't think about dying, just knew it would happen one day and that was good enough for me!
Frankie
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Oh how uplifting so many of the remarks are above. Essentially I agree with all of you. I think ppl are just different and the way that they respond to crises and sickness, death etc etc etc is vastly different from one person to the next.
A week ago I had a debt collector at the door wanting money (long story husband got made redundant he's in the construction business last April ... still no light at the end of the tunnel must be a long one!!) She was really nice (yes can you believe it!) and we got talking. She was so upbeat and energetic. We landed on the subject of bc and crikey both of us had it round about the same time me late 2006/her early 2007 and we are roughly the same age me 37/her 36. She had no support from her partner during her cancer and was stage 2 and I am 4 (although the options on here don't give that option not sure why, anyway thats what my doc told me I was). I was supported throughout by my devoted husband (but he had a blip and had an affair while I was finishing chemo ... but that's another story)
To cut a long story short otherwise I'll bore you silly. Here she was upbeat and saying I don't worry about the bc, I don't think about it, if I feel a lump then I give it a couple of days and I'll see the doc. Meanwhile back at the ranch I'm frantic if I find a lump, I worry myself sick about the possibility of getting mets, I think about it almost every day.
My summary therefor is that ppl are all different. You can tell ppl like me not to worry, take it easy but hey you are who you are, you are going to worry, you are going to think the worse, but then you pick yourself up, and you stand tall and march forward. You may not agree with me, but I am sure that in a years time when we look back at this time, us ppl who worry will still worry, those who don't wont. Thats just the way it is. Yes it's great to think positive but the world need those who worry about things.
If you went into it further you'd find that many of those ppl are the same star signs (shout if you're a cancerian - yeah great name for a star sign NOT!!!!) or maybe you're a leo (and you don't worry) I'm not into all of that but know that I am typically like other ppl born in July and a whole lot different to those born under the Leo sign. (No I don't read daily horoscopes!) My ex partner was a scorpio, my 1st husband was a pisces, my current and forever more husband is a scorpio. (Of course they are the best matches for cancerians - but I didn't know that when I met them, how totally uncanny is that!)
I get really tough on myself and think why do I always worry about this stuff and other ppl it's like a ripple in the ocean ... stop all this nonsense and wake up, but next day or week or month I'm back to my normal worrying ways.
I know for some of the ladies/gents it's gone to a stage where it's hard to stay positive no matter under what star you were born, I truly feel like such a wimp when I read about their experiences and want to give myself a good hiding for being so silly but like I said I'm a wimp and beat myself up yeah with worry!!
Oh heck I know there will be those of you who disagree, I'm not doing a research paper here or a study into something, this is just my own personal views, great if you agree, okay if you don't.
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I don't know how well I deal with things.....sometimes my head is in the sand....sometimes I worry too much.....sometimes hearing about others doesn't bother me as like before BC, I don't think it will happen....but damn I got BC in the first place, so mostly I feel that if it could happen to someone else, it could happen to me....I pick and choose what I want to read.....some days I can handle things, others not....but still waiting for a good cry!!!!
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So, someone tell me that 19% statistic is baloney, because i am having a good old freak out into my coffee here.....(my lump was 7cm)
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lol Kerry I have never heard that before and I read and searched out everything. You may have had a big lump but not many nodes which says to me that it was a lazy tumour.
How do you determine the size of your tumour since I got 3 measurements-do you take the biggest side?
This is all great advice-in a lot of ways I know I only have 10 weeks of chemo left and to tell you the truth since I am having no side effects, not seeing my doc for 3 weeks at a shot, and chemo is 1 hour once a week I feel in a way my life is starting to go on and I have to move away from cancer land and I am scared.
From the moment I wake up to bed its on my mind and I would rather to chemo then to be held prisoner by these thoughts.Moving on is going to be a challenge I can see that.
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Yup Kerry, I am sitting there freaking out right with you. NOT what I needed to read right now. Think I'll be taking a break from the boards for a while now.......
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My Surgeon said they measure the "longest" part - mine was like a bunch of grapes, long and skinny.....and part of it was DCIS....still......
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My friend had a lump the size of a grapefruit and 10 nodes. SHE was given 15% survival over 15 years. She is 22 years out but my point is her odds were different then what Jacquline read-and she read that over 5 years ago---doesn't even relate.
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Maybe that % is after Surgery and before Chemo...?? This stuff could drive you crazy.
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Kerry,
Your stats are not 19%. No offense but your doc would have told you to get your affairs in order. Your done with bc. It's not coming back and I would love to have your stats versus mine.
BTW I saw the most beauitful pic of you when you got married with red hair-it was stunning.
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Thank you! Actually, I was looking at hair colouring just this weekend....I think I will wait until "hat season" is over, but I was thinking of going red again....
And I will not even think about that Freaking 19%.....
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OMG!! What did I do here....
Yes...there was a medical journal article that said that....and it was just one of the many scary articles that are sitting out in the internet........it was old though and to be honest.......when I now look back....(and couldn't then) I know so many women that are doing well that we all couldn't fit into the only 19%. That's why we can't read all this stuff out there....in the end the only stat is our own. Besides since that article there has been Herceptin, AIs, Zometa, etc. Just doesn't mean anything now.
Sorry girls..... I usually try to make you all feel good.
Jacqueline
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Pure, I think it is very normal to ciompare oursleves, Please remember that we al all different and have different tx.
I remember the survivor girl, who actually delayed her chemotherapy, just for abit , but who knows. and with E Edwards, whi knows in that case too?
The most important thing is that MOST of us will do well.
Try hard to dwell on the blessings, I know it's hard, but it will get easier.
How's my boy. Killian?
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