Why was I stronger DURING treatment than I am now?
Comments
-
Well said CFDR.....well said!0
-
cdfr,
Oh, your post brightened my night. The line about 'victory and penis', so funny but not funny at the same time. I honestly felt like it was the first time I had smiled today.
Mine spent post dinner evening telling me he felt really very sorry for my very healthy friend because I couldn't understand her point of view in pursueding me that now I am 'cured' my life is full of 'limitless possibilities' and all I had to do was to 'embrace' my choices.
I had a half hour non-stop lecture on how hard it is for other people to understand 'those' with cancer. This from my darling OH. I felt absolutely crestfallen to be honest......
I am really pleased that you have had a 'turnaround' long may it continue!0 -
Wintersocks and all, "a lecture on how hard it is for people without cancer"? BANG ZOOM to the moon! I can barely handle my own emotions, decisions and life right now living all by my lonesome. How would I handle it if my "other" was not super supportive? I don't know. I think I'd be pretty pissed. Warmest regards to you wonderful ladies. I really treasure you.0
-
Oh, I see what you have to deal with. You know we just get a little snippet of information here, The heart knows. I'm sorry he got so angry. He sounds like a handful, It's not the words but how they're said and the context,
I just had a huge fight with my husband! Men!!!0 -
Trying to explain to someone who has no compassion, who does not feel one with their spouse, is like trying to explain the fragrance of a rose. You can't. Either they know it or they don't and what a waste of time it is trying to explain it!
In fact I do think men care about two things, their penises and their egos. And that leaves some pretty lonely wives.0 -
BOLLOCKS to your other half, he makes insensitivity an art form at which he is clearly very practised,jeezus.....what a crass tosser0 -
I love the term "crass tosser". I need to find a way to work it into my next conversation. :-)
My husband has been fabulous is many ways through all of this. Not perfect, but I try not to hold him to that standard. God knows I have my own laundry list of flaws. The sex thing has been the most difficult for him. Even if you are lucky enough not to have an issue with it, I'm sure you all know what menopause and letrozole can do to your private parts. I spent several months in physical therapy, including exercises with "vaginal dilators", had biofeedback, relaxation exercises, every kind of oil and lube imaginable. With all that, I can maybe manage a couple of minutes without pain. But now he's saying that's worse than none at all. So we continue to have sex that is stressful, uncomfortable, and often painful for me, and also not great for him. But what else can we do? I can't take estrogen. I can't get a vagina transplant.
I have a friend who's husband has had prostate cancer, and can no longer get an erection. He was sure she would want to leave him, but of course she did not. It wasn't a big deal to her, because she loves him and loves being married to him. I wish this wasn't such a huge deal for him. I've even said he can have sex elsewhere as long as it is for that purpose only, and not an emotional connection. But that doesn't interest him. In a "normal" situation, having a husband who can only have sex if there's an emotional connection and the woman is enjoying herself would be exactly what I'd want. But what happens when enjoyment is no longer part of the equation?0 -
My husband can't get the same kind of erections now as he always used to. It suits me perfectly! I told him it's amazing because I don't think I could withstand those old erections, it's as though we're on the same trajectory. Now he wants to get viagra!!! I begged him not to!0 -
Cfdr - Sex shouldn't hurt. And it shouldn't be your duty to perform if it is painful. Especially since you seem to have done so much to try to make it work.
I know what it's like to go through menopause. My idea of a sexy night is fresh sheets and my favourite pajamas. At this time, being touched feels like an invasion. Luckily my partner Jim is very tolerant and sex has just gone to the back burner without question. I'd be happy just to push it off the stove - of course it's not that simple, but for now all I want is an arm around (fully dressed) me.
I wish this wasn't such a huge deal for your husband. I second the idea of a hooker.1 -
Hi ladies,
I can not tell you how much I love this group and how much it helps me. There was a week or so where I didn't see any comments and I was checking like every day and feeling so bummed not to hear how everyone is doing.
I am still in California and have now met my first grandson Oliver who was born on the 28th. It was amazing to be with my daughter as she gave birth and see him come into the world and now hold and help care for him.
Emotionally this has of course helped. I have had some rough moments throughout still...there just seems to be so much fear coming up for me lately of new cancers or reoccurance. I have a lot of post chemo/surgical pain still and have developed full blown neuropathy in my feet and hands. Not sure I didn't have this earlier - I take a low dose of pain meds for the joint pain and that may have been masking it.
I so wish this part were easier. It has been 15 months since my diagnosis, 7 months since I stopped completed both chemo drugs and 4 weeks since my last and final herceptin but in some ways the whole thing seems so fresh in my mind and I just get overcome with fear, grief. Seeing my daughter breast feed her son brings back so many wonderful memories of breastfeeding my three children - I LOVED it so much and it literally aches when I hold him against my hard implants that I don't even have soft breast to cuddle him with. And of course the fear that I may not live to see him grow up.
The recent discussion on painful sex also helped. My husband has been wonderful about not putting any demand on that at all this past year but we did try to resume some sexual contact this summer and it was painful and also very emotional for me. I just SO missed having my breast and having them touched that in some ways that was the worst pain of all.
I saw a gyncologogist who is trying to help with making it less painful vaginally but I don't know how I will ever get past the having no breast as a part of our sexual experience.
Anyway, I thank you all so much for being here and what does really help is realizing that there are other women out there who are still struggling, living their lives but finding it hard and finding it harder still to have many sympathetic ears once you start "looking" better.
I send much love to you all,
Julieho0 -
cfdr did you try yes yes yes?0 -
Lily, I have not tried yes yes yes. I've tried about a dozen others. I'll try that one next. Thanks for the suggestion!
Janet, my husband was fine with it on the back burner for about a year. I wish he was still OK with it there, or at least pressured me less. Timbuktu, I actually asked my doctor once what age it is that men start losing the ability to have erections. It would be much easier if we were both in the same boat! I think he has just not adjusted to the new "normal" yet, which is that with about 30 minutes of preparation I can last about 2 awkward minutes. Sometimes I feel like asking him to grow his head of hair back so he'll understand how impossible it is when someone wants your body to be younger than it is.
Julie, so glad that your grandson and daughter are doing well and that you are able to be with them. Moments like those make it worth the struggle.
Yesterday was the 2 year anniversary of my first chemo treatment. I reminded myself that at that time, I was afraid I would not even be here in two years. I have to remind myself that struggling with side effects is better than not being around for the struggle.0 -
cf, I don't remember the date I began chemo but it was just around now. It's been two years, just like you!
Yes, it's been two more years than we might have had and that's such a miracle. I think it also proves to me that I can endure more than I thought I could. Congrats to both of us for two years!!!0 -
Excuse me breaking in here, but we are looking to show your faces, names and quotes at our fundraising event in October (www.rockforbreastcancer.org), and would love your help. This event is one of our largest fundraisers of the year and we'll be joined by hundreds of generous donors.
Specifically, we will have two projector screens up during the event, and want to show the people attending the event YOUR faces--- the women of our community, the women who use and rely on BCO ! Having the opportunity to share your photos and quotes that night will reinforce to our donors, in a meaningful and personal way, just how vitally important their contributions are to our community.
For this, we are looking for people willing to share a photo of themselves (either alone or with family, friends, pets, other BCO members, etc.), allow us to use your first name, say where you are from (it can be from anywhere in the world!), and give us a quote on how important BCO is to you. We are looking to have at least 40 people and have (only) a few weeks to work on this.
If you are interested, could you please email Melissa at mjenkins@breastcancer.org, with your photo, first name, where you live, and your quote? Also, PM us if you have any questions!
Thank you, thank you, thank you for helping us!!
Melissa0 -
Hello all, I think this book has been mentioned on this thread previously but thought I would repost. I am reading and really liking "Dancing in Limbo: Making Sense of Life After Cancer" by Glenna Halvorson-Boyd and Lisa K. Hunter. It also helps to know you all are a heartbeat away.0
-
great! I'll head to my library and check it out. Was hopeing this thread wasn't dead.0 -
I read that book...I seem to recall it was very worthwhile. But I read it my first year post-treatment, so of course I don't remember any details about it whatsoever. Maybe I need to read it again. :-p0 -
Hi everyone, I'm new to this post as I've been a part of the May 2013 Chemo group. I was just perusing and thought I would jump in. I'm done treatment and now on tamoxifen. My question is how do you move on without thinking every ache and pain is cancer. I am consuming myself with every ache and while I don't want to live always paranoid, I want to be diligent. Any advice?0 -
Debbie, as far as I can tell your reaction is very common, and certainly I'm having the same feelings as you. I think the best thing to do is, if you have an unusual feeling for a week or so, call your dr. and ask her/his opinion on coming in. You had *cancer,* your dr. will be able to guide you.
You were stronger during treatment because all your brain cells were concentrated on getting through it. Now that you're just on the pills you have spare brain time to worry. Best wishes!0 -
I think with time you just forget. When I first went on arrimidex I was a nervous wreck because every side effect "felt" like recurrence to me.
After going on and off several times, the se's become familiar and although they are not fun, they are recognizable. It's when something new happens that I get that old shot of fear. But those are becoming fewer and farther between. So, with every day that goes by, confidence builds.
Of course the fear is always there but it goes further and further in the background,0 -
While you're in treatment, there is always somebody to ask. They watch you carefully. Then you are DONE!!! And nobody is there, except you and your fears.
And your imagination can run away.
I had a squamous cancer cut out of my arm 2 years before bc dx. I found a lump on my foot yesterday. In my mind it was back. I couldn't get into derma fast enough today, crying and shaking the whole time. A real wreck. She cut it out, didn't think it is ca, but sending it to path to be sure.
And that reaction bothered me. What if it really does come back? Will I be the blubbering mess I was today? I need to find that strength again. But where?0 -
So sorry you had to go through this Spook. Let us know when it comes back negative, It's not an easy thing to come to terms with, the constant uncertainty. I hope you dr is right and this was just a scare. I think I kind of go into denial in between panics.0 -
I found that it helped having a better idea of what the symptoms might be like for a recurrence or mets. Knowing that mets is most likely goes to brain, bone, liver, or lung means that a chronic stomach ache is not likely to be mets, but a chronic cough might be.
I also asked my onc what bone mets feels like. She said "It's not subtle. It's not an ache. It feels like a broken bone". Also, bone mets tend to be in the ribs, hip, or spine. Knowing that, I don't get worried any time I have an ache in my legs. Although when I had an MRI of my shoulder because of a rotator cuff problem, I made sure to ask that they keep an eye out for any tumours, too.
I also have (mild) pain from costochondritis (rib inflammation), even two years post surgery. I first went back to the docs for it a few months after chemo. I was terrified I had mets to the ribs. They also thought I may have broken a rib coughing from the pneumonia I got after chemo. And of course, bones are more likely to break if you've had mets. So getting that x-ray was worth it to put my mind at ease. Even though I still have pain, I no longer worry about it being from mets.0 -
cf, you are so smart! I stumble around in the dark while you just take charge. You're right, it's good to know the facts. When I go to my onc he always taps my vertebrae and asks if it hurts. They don't hurt, even though I have terrible back aches. It makes sense to ask, drs are so busy. They aren't going to go over this kind of thing without being asked.
Isn't it funny how happy we can be to have arthritis?0 -
My hips hurt more and more so now I´m worrying0 -
Hi All,
2 in the morning here in Blighty, Am in london visiting my son. and staying with a very good friend. Don't like it when this thread goes quiet. I still need to check in.
Need to see if all are feeling as me. It is a comfort to see we do share so many feelings/uncertainties.
I love this thread. I have had too many glasses of wine tonight.0 -
hi everyone,
I miss it when folks don't post too. Bi love hearing from everyone on this thread.
I am home now after being gone a month to be with my daughter as she had her first child, and our first grandchild. It was very nice but literally the day before I left I got a call from my oncology genetics counselor to tell me that I tested positive for a gene mutation on the 40 + genetic panel they did on me four months ago.
I have what is called an NBN gene mutation. I will meet with the head of hereditary cancer oncology and the genetic counselor in a week or so to go over the findings but it has just left me feeling so scared and kind of defeated.
I also have to schedule to have my port taken out finally, get blood work Monday and see my regular onco Wednesday so it is back to reality again.
Does anyone here have any experience with generic screening beyond the Braca gene?
Thanks everyone for being there.
Julieho0 -
I'm in awe. You spent a month taking care of your daughter and new grandchild and you still have a port in you. I am humbled.
I had the BRCA test and it was negative. Then they said for $700 I could get another test because the BRCA test that insurance covers still leaves 3% out..or something like that. So I paid and it was negative again. Not sure if that's what you meant but that was my experience.0 -
Julie - don´t be defeated, genetic blips dont make anything inevitable at all, they just add more information to what is going on in your body.....I have other (believed to be) genetic defects that were identified, not cancer related but potentially life threatening and I am glad I know as I have more power to work with my body now to help it stay strong against weaknesses I would not have known about and to protect myself against drugs and other substances that would increase the tendency to do me harm.
Thats very rambling but hope it makes sense.....0 -
Julieho -
Lily has a good point of view. Nothing is inevitable and it just adds more information to your already huge arsenal of knowledge. Think of it this way. Say you go to the library and check out a pile of books - just enough to carry home. Then someone throws a few extra books on the pile. You can either at at the pile of books as being too heavy a load, or you can look at it as extra valuable information, and summon a bit of extra muscle and pick it up.
I do understand what it is like getting 'back to reality'. It must have been wonderful spending a month with your daughter and grandchild. And she must have been soooooo grateful to have you. Life with your family is also reality - of a much more enjoyable kind. The other reality is dealing with cancer, and that is a part-time job. Cancer is a job. It's not nearly as enjoyable but it has to be done, and the less you resist, the easier it will become.
Just in case I come across sounding overly sane - I've had those nights where I can't possibly face one more appointment or have one more person stick something in my arm. The worse was when I was at home visiting my mom for a few days and I felt so safe, and so loved that I was sobbing at the thought of returning to hospital-land. I go from being a blubbery mess, to an awesome warrior. It's a really rough transition, isn't it?
Just take it one step at a time, and gather as much information as you can. Like Lily said - knowledge is power, and will give you the ability to take the best care of your body. Sounds like there are a plot of people in you life that need to have you strong and healthy. I don't think defeat is an option. Please keep us posted on your week.
Wintersocks - So nice to hear from you. I love wine.0
