Why was I stronger DURING treatment than I am now?
Comments
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Lily55,
What's the matter with your hips?
Hello everyone too tired to write more after my night out in London with my bonkers (but lovely friend)
Will write more tomorrow
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Hello everyone,
Thank you for all your comments and support. You are absolutely right that knowledge is power and will ultimately help guide me and my family members who may or may not also share this gene mutation on what screenings and precautions we should take. And, the other point that several of you made - which is just because I have the gene mutation it does not mean that I will definitely get more cancer - it just means that I am in a higher percentage group but, as a good friend of mine who has had breat cancer and 15 years later a re-occurence in the same breast - you don't have cancer until you are told you have cancer.
I really don't know much at this point anyway - which is a bit frustrating but, as you all know in the medical field you often have to wait quite a bit of time to actually meet with the doctors and team after a diagnosis before you find out the full story and what it means for screening for possible future cancers, my kids, etc. So I am trying to just be patient right now.
I just scheduled to have my port out in early November so that is good. It is the last remnant of all of my treatments I went through for the past year and I will be happy to have it out - although I am grateful I had it because it sure made blood work and infusions very easy.
I have found it is nice to be home again. I was so struggling early this fall with the empty nest of having my youngest leave for college, menopause brought on by chemo and of course just the emotional impact we have all talked about of having the year of treatments and surgeries over with. I think the month away with my daughter and new grandson helped.
I had a small breakdown last night while watching TV. I was watching a new series on Showtime called Masters of Sex and they had a scene of a woman taking off her shirt and seeing her breast just made me burst into tears. Sometimes I just so miss having my breast - I am grateful for the implants because they make me feel more comfortable in clothes, etc but they feel and look nothing like breast and of course have absolutely no sensation sexually - they are just sometimes rather painful and uncomforable.
Anyway - I am now rambling but I love this discussion board thread and hearing from all of you and I wanted to let you all know that.
Take care,
Julieho0 -
I am going through this now, I have been done with treatments one year now and have been taking Tamoxifen for almost a year. I was not participating in support groups during active treatment. I started my first support group November 2012. I have began private counseling two weeks ago. I cry on a regular basis. In my situation I feel alone, I feel I had some support during the treatments, but treatment is over and everyone has moved on but me. Sometimes in support group feel like I bring negativity because those stories are not being shared that I bring out on the table.0 -
I'm crying right now. You are not alone,0 -
I hope that you have a better evening and can dry those tears.
Your a warrior!!!0 -
Erin, I'm guessing that if all the other women in your group were doing great, they wouldn't be there. And even if you are more fragile than they are right now, that's OK. There's no script or timeline for how each of us each recover from this. Crying is good.
I see you are in NC...are you in the Triangle? There's a wonderful place in Durham, Cornucopia Cancer Support Center. Yoga, massage, workshops, reiki, and lots of good information and nice people. I also went to a cancer camp up near Hendersonville, Camp Bluebird. They probably just had their fall session but they also do one in the spring. And it's only $40!
Julie--congrats on having the port removed soon. I never had a port but I can imagine that it would be a milestone to finally get it out. One less daily reminder of what you've been through.0 -
erinclark - Hi there. 'Everyone has moved on but me' seems to be such a common theme on these thread.
cfdr is so right or saying there is no script or timeline for these feelings. All of a sudden, the appointments stop and the hair grows back and the rest of the world is happy that you are 'back to normal'. Meanwhile you are completely stranded feeling nowhere near normal, with all the invisible feelings that don't fit into your body.
I had uncontrollable crying too. And lots of little meltdowns, as well as difficulty getting involved in regular conversation. I did not glide easily back into the 'real world'. Not that I look back - all that crying and letting go was just my way of getting to the bottom so I could start rebuilding. It was a hugely sloppy and fragile process but necessary for me. I had to incorporate all the new experience and emotions into my being and in order to do so I pretty much had to bust wide open.
You've already been through this much - but this is the part that nobody tells you about. It's harder in a way, because it's so unscientific and difficult to explain. And there is no set plan of treatment. You just have to take it day by day, and allow yourself to live in discomfort for a while. It doesn't feel good, but we can't force ourselves to feel happy.0 -
Thanks so much for the kind words and support. It feels great to know I am not alone.
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erinclark31 - you are so not alone. I just recently found this discussion board thread and it was the first thing in the last several months that has really helped me feel "normal" about having such a hard time emotionally now that treatments are over.
I found that reading back in the thread helped because it seems we all started in sort of the same place and now some of the woman are doing better, which is good to know - that this is part of a process of healing, grieving and recovery - both physically, psychologically and emotionally.
I am glad you found us and that this group of women is here.
Sending you love and support.
Julieho0 -
I was talking to my therapist about this very thing yesterday. I was crying because now, six months after treatment I am finally deeply realizing how the loss of both my breasts, even with reconstruction, has affected my sex life with my husband. Hope this isn't tmi but so much of our foreplay involved my breasts and now they're numb to the touch.
When I made the decision to have double mx I was solely in the mindset of saving my life. Sexuality just didn't match up with that urgency. I spent my emotions and energy getting through chemo and surgery.
Now that for the time being I am NED I can feel the loss of capacities that involve intimacy and self-image. It hurts. Lately I am fighting back tears on a daily basis just about this issue.
Treatment was survival. Life is more complicated. I feel for all of us who are coping with the emotional and physical aftermath of diagnosis and treatment. It is just so hard. This board is a lifesaver.
Hugs,
Peggy0 -
Peggy...I feel the same way. My hubby would never say it to me but I just know he misses the response he would get just by touching them...now they are numb blobs. It really is sad what we have given up and I am always at the point where I could cry any minute. Sometime I do...mostly when alone at home or in my car driving home. I do not like others to see my pain and do not want to burden them with it all so I just keep quiet....I think I really need to see a PTSD therapist soon. It has affected my to the core and I feel myself becoming a different person. One who is not tolerant of others at all....errrrrr. I went to dinner/drinks tonight with my dear friend and SIL who has major marital problems and she kept saying that I was spoiled and get what I want all the time and called me a princess. She tried to play it off and act like it was a joke .....really....like I wanted this??? WTH?
Unless someone has walked in our shoes...or put on our bra they have no idea what this does to you emotionally. I had to have an Ultrasound today to see if next I will need a hysterectomy and all I could think of was great...born a girl buried a boy. I will have nothing left of my female identity left. Thank goodness that came out well with no evidence of masses or tumors so now we have to figure out what is causing the issues without hormone therapy....errrrrr
Maggie0 -
Peggy and Mags,
I was so sad at reading both of your posts, sad for you both and sad for me. I understand your grief of how breast cancer has hi-jacked your sexuality in such a brutal way. It's so very hard isn't it? For myself, although I have a partner my sex life is non existent. I cannot imagine ever wanting that level of intimacy again. One breast, one huge scar, and memories of the persistent unwanted sexual advances from my now ex. Hot flushes, altered female anatomy, thinning hair... (thanks Femara).
Mags, when I read the line 'born a girl, buried a boy' it really jumped out of the page. I found it such a shocking image, it did make me pause in its brutality..... but breast cancer is shocking..and what it does to us is physically is terrible, what it does to our minds is even worse - I wish I could express this and maybe I wouldn't feel so shocked at all me and others on this very special thread have endured. . But I feel mute and numb.
I too am due to have a gynae op, oophrectomy with both tubes out on Nov 7th. I have a very large cyst on my right ovary (report says almost certainly B9), What that will do to me? I feel like every last bit of oestrogen has been squeezed out. My femininity all gone.... The rawness of your words has helped me to capture and pin down my feelings. Thank-you for that.
I too do not want others to feel or see my pain, and mostly keep quiet about it. I can only really express myself on this board, to others that just know how I feel, sometimes better than I do. Unlike, you and Peggy I cannot cry much (wish I could), I mostly exist in a state of numbness -zombiefied. I wonder if this is another manifestation of the PTSD you describe?
Your SIL sounds truly horrible. There were friends and family that I had to stop seeing following my dx, and to this day I have not seen them or made contact. I have to add I feel much better. I felt my decision to cut contact was life preserving . I could just not tolerate their behaviour. How dare your SIL say those dreadful things? What sort of 'Princess' gets breast cancer? - not the ones in the fairy tales. Stop seeing her is my advice.
I keep being told it is early days yet, and along with my other health stuff, perhaps I am just expecting too much of myself? Maybe, Peggy and Mags we have little choice but to feel the intensity of where we are, until time and understanding (at least on here) blunts those feelings for us?
I do hope so.0 -
It's been two years now and until now I have not had this problem. However, lately, I find myself nervous about my husband leaving me.
It's been 44 years of marriage. Lots of ups and downs, often more downs than ups. But for some reason, I felt sort of secure. Maybe because our sex life was not a problem. i'm not sure why. But lately I've been thinking of how much better his life could be if he left. He could find someone else in a second. He's good looking, educated and works with a lot of admiring women. If he left he'd have more money and fewer worries. And, I have to admit, he'd have a whole woman. I feel strange saying this because it sounds so shallow and until now I never gave the breast a thought. I think, as you've said, that when you're focused on survival there's just no room for this kind of feeling. At least not for me. And 44 years is a long time to have had he each other. I never liked my breasts. I don't have a great figure...actually I'm fat. So this surprises me and upsets me in a new and horrific way. It will pass, I know, along with everything else. It's just really unpleasant. It's a though, for the very first time, I'm able to experience the loss. Maybe that's a good sign? Maybe it means I'm not quite a afraid as I was before? But it's not a good feeling...0 -
Wintersocks...I am sorry if my post upset you at all. I was just venting some frustration. I know that most of this lies on me and my mindset and I am working hard on getting ME back and soon. I was not prepared for the emotiinal scarring part of all this. It has really wreaked havoc on my psyche. Perhaps when all the reconstruction is over I will stop obsessing over the losses and focus on family and happiness and living life fully
Hugs to all my brave fighting sisters
Mags
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Hi ladies,
I can so relate to these feelings. I agree that psychologically not having breast is SO much more difficult than I thought it would be. It is not like I didn't think about it at all when I was diagnosed, but given my family history and my mother having one and then the other breast removed from two distinct breast cancers three years apart, I had thought about it well in advance and always thought - if I get breast cancer I would just remove my breast because living with the fear of reoccurance or a new cancer (like my Mom had) is just not worth keeping my breast. And, as difficult as it has been not having breast I would still do the same thing - but, I was surprised how unprepared I was for the emotions, grief and loss I feel at not having breast.
Typical of many middle aged women, my breast had sagged, etc but I honestly did enjoy them as part of my physical presence still and they were a large part of my sexuality and my enjoyment of sex.
Being with my daughter last month as she nursed my new grandson my chest literally ached to remember the feel of that and as much as I try I just cry when we have sex because I miss having them so much. My poor husband doesn't know what to do - I feel like he trys to avoid touching that area because he knows I won't feel it and that will likely make me feel bad but, if he "avoids" touching me on the chest than that also makes me feel bad. I think right now sex is just psychologically painful, in addition to after a year of chemo and other treatments, sometimes physically painful.
This week back home after being gone a month has been real up and down for me. It was good to be home in many ways, good to be back with my husband and all my dogs but I also was back to having four doctors appointments this week, I actually cancelled one for tomorrow, because I just felt overwhelmed again after being at the doctor for awhile today. I just came home and cried and cried.
I also hate crying in front of my friends, children and even husband - although certainly my husband has seen it the most. It just feels like other than on this discussion board with all of you the rest of the world, even to some extent my doctors and nurses all think that the "whole thing is behind me" now. It is not to say that people actually say that to me but it just feels that way.
That is why I so love hearing from all of you. It is just a place where I feel safe, not crazy, not weak or ungrateful but just able to express the whole gamet of feelings that the diagnosis, surgeries, treatment and aftermath have brought on for me.
I am deeply grateful to all of you for being here.
Take care everyone,
Julieho0 -
It must be something in the air, for the last couple of weeks I have been "off", crying, angry, just really weird and then I find out my very best friend of 38 years who herself is a colorectal cancer survivor and helped me through chemo was told by her husband of 27 years that he's done and wants a divorce, then another lady I know who is a bc survivor and been married for 26 years is getting a divorce. And yes to be honest, I have worried about that with my hubby, but the weird thing is everything is fine between us no arguing or anything. It's i just feel like I'm always complaining about something......I seriously just want one day without being tried, or not having these pains.0 -
Sherry,
Since BC I have been so attuned to potential losses in other areas of my life that I feel that the floor has been swept out from under my feet most of the time in terms of feeling secure. Periodically I feel grounded and peaceful but that is the exception rather than the rule.
BC robs us of so much and I think it is only after treatment that the full impact of those losses can be felt. I don't know what I'd do if I didn't have you all and a therapist who specializes in PTSD.
I am finding that if I expect little good of the day to come I can be happily surprised when things go right. I have to keep that bar of expectations low so I can have some success in rising above it.
I wish us all peace soon...until then we have all of these wonderful women who understand what we are going through.
Hugs,
Peggy0 -
How odd that use that term, have the floor swept from under you, That's the image that keeps coming to mind vis a vis my husband. But that's always been the case, I can't blame BC. That's exactly my life. Weeks, even months of relative peace and then the bottom falls out and I'm left bereft and kicking myself for thinking it could ever have been any different.0 -
Timbuktu,
This pattern sucks, doesn't it. My husband and I are seeing a counselor weekly now that I'm 6 months out of treatment and it really helps us process what BC has done to both of us. Have to find a qualified therapist though who knows how to deal with PTSD issues. BC is a trauma no matter where your marriage is at the time. By the way, it took me three times to find a real husband.
Hugs,
Peggy0 -
We've been in counseling for months, I thought it was really working. Then, the punch in the gut. I have not spoken to him all week. The therapist said we should deal with it in session and I'm waiting for Monday. But yes, it's a pattern that has gone on for decades. I can only kick myself for trusting, believing, etc. I'm as angry at myself as at him. I should know better by now.0 -
Whew, what a day!!! Good news I particpated BC 5k and finished in 48 minutes. But instead of being happy, I have cried for the last hour, sad and depressed, I am def suffering from PTSD. I have all the broken expectations from family and friends. I need to be rejoicing my survival and good health and support of my daughter and husband, but my hearts breaks on a daily basis. I feel like I an idiot I have cried and complained to so many people I have pushed them all away. I want God to please show me purpose of survival, because I am not doing a good job of inspiring. I am a hot crazy these days.
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warrior319
Could the tamoxifen be part of the mood changes that result in such tears?
Also, if people back away from your emotional pain you are not driving them away. Something in them just can't handle emotions. Also, if someone hasn't been through a life threatening illness of their own, they just can't get that treatment is hard physically for sure but the year after all the emotions we stuff to get thru treatment come rushing out. Doctors don't prepare us for this; we find out from others here that we seem to be in the same boat.
Your thoughts about not having a purpose on earth may be better answered WHEN your mood stabilizes. Right now your depressed feelings will color all thoughts--when you begin to feel better your place in the universe will become clear to you. I promise.
Congratulations on the 5K! That was your purpose for today!
Hugs,
Peggy0 -
Peggy, I am beginning to wonder if the tamoxifen is doing this, but these heightened emotions did not happen until about 3 months ago, and I have been on Tamoxifen for one year. Thanks so much for the kind words and support. This is nothing compared to cancer and I can and will get through this.0 -
it probably is the tam. Before I started rads I was weepy, but when I started the AI I got witchey, cried easily, hot flashes, moody, insomnia. I asked for, and got Effexor. It really helps.0 -
Well not to be forward, my emotions and horomones erupted a menstrual cycle this morning. I feel good and more balanced today. Thank God!!!0 -
Hi everyone,
I thought I would check in on what is a gloomy, dark November morning here in Vermont.
Yesterday after one of my third doctors appointments for this past week I went to a small grocery store in town and bumped into two women I had done a Mindfulness and Mediatation class with last spring after I was done chemo.
The class only met once a week for 8 weeks and I didn't really know them well, we couldn't remember eachothers names but we began talking and hugging like we were the best of friends who hadn't seen one another in a long time.
The one woman has been diagnosed with metastatic cancer and has been told she has probably about two years. She is doing a clinical trial in Boston (4 hours away) and seemed optomistic about this treatment and overall in fairly good spirits. The other had ovarian and has been given the "all clear" for now but they told her to keep her port in for a year after her "all clear" CT scan because the first year is the most common one for reoccurance. I also found out that she had just the day before met with her genetic counselor and found out she has the same gene mutation I have, which from all accounts appears to be a very rare mutation and one they know little about. I meet with my counselor next week about it, but she basically told me they don't know much about what this mutation means so consequently there isn't much follow up. We were both amazed to find that we had each been screened for a large panel of genetic mutations potentially linked to cancer and both had the same mutation. I will see if I get the same "talk" she did this coming Thursday.
I get my port out next week too - which I have had for 14 months. The three of us laughed, hugged and talked about how very hard this chapter of the process is. This place after treatment is over, which it isn't even over for the one woman and you don't feel emotionally or even physically in many ways better.
We actually realized that in fact most of us felt physically fine at the time of our diagnosis, we weren't in pain - for most of us our cancers were found through routine screening. Cancer is one of those strange diseases that for many of us we feel perfectly fine when diagnosed and then after we are treated with surgery, radiation, chemo and are told we are okay we feel physically bad.
We exchanged numbers and hopefully I will see them again and get together for coffee. I told them about this discussion board and how I found this group of women on this thread at a critical time in my recovery. I can't tell you how much it helps me to not feel so isolated with the emotions, depression and physical pain of post treatment. I have a loving community of friends and family but I find that for the most part I try to "ask as if" everything is okay because it is too hard to explain what this space in time is like.
Thank you all for being here...you are truly my lifeline right now and I hope everyone is doing as well as can be expected and look forward to hearing from you all as you check in peridocially over the next few weeks.
Take care,
Julieho0 -
julieho-I have always felt the way you explained it, perfectly healthy on diagnoses, then I made myself feel sick with the surgeries, chemo and the drugs. Having cancer and going thru this is an experience to say the least a humbling experience. I have learned that I'm not alone, and that all those freakin ocd's I have/had really need to be put in check. I'm not the same person I was 2 years ago, do I like that NO, but I'm learning to except things a little better. My main peeve is from people who have never had cancer and think I should be perfectly fine now, well I'm not, I'm working on it but if it bothers them that much I have decided they are not worth it.0 -
It really adds salt to the wound to be judged for having a wound. Like you I have decided they are not worth it. OTH, most people have been very kind and loving.0 -
mstrouble i agree, on the rare occasions i tell people i hurt every day they are shocked.....people seem to see it as being like a long dose of the flu......its so much mire than that, i still avoid having baths, hate my mutilated state0 -
julieho - I never thought about it like that - healthy at the time of diagnosis, then made more fragile by the treatments. It all seems so backwards. Especially the very last part. Where we look good and 'normal' but have all sorts of invisible mending left to do. I think most people are happy to forget that I ever had cancer, and are relieved that I'm standing up straight again, and back to work after my DIEP. However, I do have one lovely friend who just sent me a card saying how proud she is of how gracefully I've handled things over the last two years. I was incredibly touched - not by the 'graceful' bit, because that's my public face and the private face is WAY more sloppy. But I was really touched that she understood that recovery is an ongoing process.
Also, October is over! Yahoo! That means that all that pink stuff won't be assaulting us every time we walk into a store! Instead there a Christmas decorations. A little bit early - but a lot more jolly.0
