Why was I stronger DURING treatment than I am now?
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i don't know, i think i offended some of my sibs, the ones that wanted to come? more trouble than what it was worth. i know them, and it would have been awful. plus, me and my man are pretty much hermits and i KNOW that that would have driven him round the bend, and i wasnt gonna do that to him. it all worked out.
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I think at times like these we have the right, even the obligation, to do whatever makes life easier for us.
Those who care will understand. Those who don't care don't matter.
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I just read After the Cure: The Untold Stories of Breast Cancer Survivors for the second time (HIGHLY recommend it). Some of the women interviewed in the book discuss exactly what you are experiencing, Bogie. Most people (including some oncologists, sad to say) just don't understand that the side effects of surgery/rads/chemo can linger for years, sometime compounded by the side effects of hormonal therapy.
I actually bristle at the word "Cure". So much of the rhetoric around breast cancer revolves around finding a "cure". There is no cure. There are treatments with varying degrees of effectiveness and toxicity. Even a Stage 1 cancer can recur or metastasize despite aggressive treatment. Once we've gone through active treatment, people think "oh, she's cured!" and don't understand that we have been physically and cognitively damaged from treatments. It doesn't occur to them that although it appears the treatments were effective in eliminating the cancer, we could discover at any moment that the "cure" was merely a delay.
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I feel the same way you do cfdr. My mother's breast cancer recurred 15 years after her mastectomy.
Yet when i saw a top onco at Columbia Pres in New York I said "I hope they find a cure soon!" She said "People are cured every day!" I guess we just don't know who is cured and who isn't. It ain't over until it's over as Yogi Berra said.
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I agree, I think we have earned the right at this point to make life as simple as possible. I try hard to exclude negativity, drama and complicated people from my life now. I just want peace and less stress. Those who held my hand through my journey I will never forget and will forever be grateful. Those that caused me heartache and criticized and caused me stress or drama I have to walk away from, or it's just not health for me. If they want to blame me, they can but I know if it were them that was sick I would just love them through it, pretty simple.
Now that it's over I can't seem to forgive them. If one of my sisters told me they had invasive breast cancer and kidney cancer I would have been by their side before we hung up the phone and taking care of her family and kids. Mine supported me by email only and seem to think that is ok and can't understand why that is not enough.
How did we come for the same family, I will never understand how siblings can be so cold. My friends and husband are so upset with them for their lack of kindness and compassion.
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Bogie-my heart goes out to you. I have no siblings, only an 87 year old father and an 88 year old aunt. She is almost 5 hours away. All my Dad did during my treatment was fuss because I didn't go to Mayo or somewhere big, so I learned to just keep everything inside and away from him
I know some people (many) who just shut down in the face of other's illness. It isn't that they don't care, they just are so afraid, its like they start protecting themselves from the pain of the worst possible scenario. One of my girlfriends did this the minute the other one told her of my diagnosis. I had to call her and laugh about having cancer, and keep telling her I wasn't dead yet, and joke about it, until she softened up. But my other firned immediately called me and told me she could literally feel this woman curl up and shut down as soon as the words left her mouth about me.
And I had friends who offered to cook meals, etc. but I wasn't ever that sick, so now I think some of them think my diagnosis was nothing--they don't get the little icky side effects and on going fear about every little change, and all the creepy other things we have to go thru.
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Bogie,
These issues are so complicated and I so still struggle with them nearly two years out. What I found helpful was to put the issue into a present and future category. For example, there were some people I had to "put off ". Immediately to take care of myself. I avoided them but did not cut them out of my life in case I changed my mind and feelings in the future.
Others just had to go forever, they were so toxic. Some I told why and some it didn't feel we're worth the energy to explain.
My oncologist was the first to go! And I told him why!
I saved a future category because I've been through non-cancer related serious depressive episodes that people have responded hurtfully to too, but once out of my depression they could be a casual friend again. Someone to go to a movie with but not spill my guts to.
Self- preservation and self care were and are my key reference points, especially since the BC. We face mortality in such a visceral way with BC. People and activities and time really do get re-prioritized from this perspective.
Listen to your self-caring heart and you will find your way with these issues.
Hugs,
Peggy
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Bogie - I lost a few friends during the course of my treatment. During that time, things became so clear in terms of what I needed around me. Negative self-centered people weren't one of them. I had to make my treatment all about me - and some of my ex friends made it all about them. Luckily, my family were all fabulous.
What I do regret tis that I never explained to some people why I cut them off. To this day, I feel a lot of remorse. Partly I was a big fat chicken because I dislike confrontation. And partly, I didn't have the energy to deal with a bunch of people going through the middle aged crazies who couldn't deal with my situation.
I had one friend who lives abroad, and I wrote her about my stuff. I knew she was sensitive so I worded it in a way that emphasized an excellent prognosis, and an easy breezy treatment. (as if) . Anyway, she didn't respond for over a week. So I called her to ask if she got the letter. The phone went to message, so we never spoke, but she emailed me to say that she 'couldn't breath' and 'didn't know what to say'.
This really pissed me off. I'm usually a people pleaser and have spend a big chunk of my live smoothing things over, but I hit the wall as far as trying to make people feel comfortable. It wasn't time for me to take the back seat. I eventually cut her out of the picture. I miss her - but it's too much work.
So follow your heart in terms of who you want to surround you. You're entitled to do whatever you want. But may I suggest that you make it clear why you're doing what you're doing so that there is a level of understanding. Confusion and misunderstanding can take on a life of their own and live forever.
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I absolutely agree that you have a right to put yourself first and surround yourself only with people you can handle at such a time. In fact I think it's your obligation, self preservation has to come first. But I'm not exactly sure why you are angry at the woman who "can't breathe". There must be more to the story. It sounds as though she was truly overwhelmed by what you were going through. I guess I'm more often surprised by people who WERE able to handle the whole thing!
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Tim - I guess I was upset because it took me such a long time to write the letter, and I did it so carefully in such a way that it came across as optimistic. We were really close friends, and she didn't acknowledge that she'd even heard from me until I called her again.
After that time when I saw her write 'I can't breathe' my first reaction was 'how the hell do you think I feel?!'. Also, maybe she was the one friend that stated her sentences with 'I' once to often.
Ha! I guess you're right Timbuktu. A lot of other stuff was going on. Also, I never told her how I felt. For someone who doles out advise so freely - I can certainly do some stupid stuff.
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Janet ~ sure sounds like a friend of mine. Her name isn't Esther, is it? I have to remind myself, too, that news of a cancer diagnosis brings up "stuff" for other people when they hear. So interesting who comes forward and who backs away (then comes back when they think you are "you" again). ha!
I had to call my out of town friend (who I knew was coming into town ~about 8 months after diagnosis/chemo/rads) and ask, "hey, are you here yet?" ~ Then to hear she had been in town for 4 days and hadn't called me yet really hurt bad. She made some excuse about her mom and brother needing her at a restaurant that they run. Pleeeeeeez. I would move mountains to get to her the second I was in town ~ if the situation were reversed.
Mmmmmmm, apparently I'm still a bit peeved. I thought after 30+ years of friendship.....?
We do what we can, right? Some friends really are the "I" "Me" type unfortunately and our having a breast cancer diagnosis doesn't change them. Esther and I are still friends of course, but my heart still hurts when I think about it and truly, our friendship has changed.
So good to see all my friend's names here on this thread ~ work is slowing down a bit so I hope to catch up. Hugs to everyone and hello to the new names I see.
Purl
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I think a lot of people get scared that if we can get breast cancer, they are at risk too. This may all be pretty unconscious but the bottom line is that we don't often have the energy to do do anything after a weird response to our situation but go "huh?" And quickly move out of thinking about them to thinking about taking cause of ourselves and interacting with those who can be supportive. I had my share of weird responses and they hurt but I try not to dwell on them simply because it eats up too much energy and I need all the energy I can get even now.
Hugs,
Peggy
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This discussion reminds me of the "ring theory" article in the LA Times last year. Worth a read:
http://articles.latimes.com/2013/apr/07/opinion/la...
I was really lucky in that almost all of my friends and relatives were very supportive and (except for a few bonehead remarks by my husband) didn't say anything stupid. The one friend that did let me down, I can forgive easily. She was the only one of my close friends to have gone through this before: multiple biopsies for in situ tumors, then finding the IDC, having a BMX and chemo and reconstruction, and never missing a day of work. But once it was done, it was done, and she put it behind her. I think it would have been too difficult for her to reach out to me during that time. She was always there if I called her with a question (she's also a PhD nurse married to a doctor), but never made the effort to see how I was doing. I think it's just to difficult for her to even think about BC.
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Peggy: When I'm rested, feeling not so "side-effect"y (yes, new word) from meds ~ I see things with much more understanding and love. When I'm tired......very sensitive and easily peeved. A good reason to really listen to what our bodies need and put our health first like you said.
Hugs right back, Purl
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Bogie, I am so glad you posted about your experience. look at all of us that shared about it! It really has helped me to read everyone's posts and perspectives. thank you
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Friends,
I am off to the GP's tomorrow to get a liver function test following my emergency admission for cellulitis and 6 days of IV antibiotics. When I saw my GP she was great as always. I told her despite Anti Depressants, I could feel myself sliding. She upped the dose. The thing is since then I just cannot pick myself up. I feel so numb. My eldest son has developed massive health anxiety and was ringing me at 2 and 3 in the morning over various 'lumps'. this went on day and night. I had to go to London to calm him down and speak with his GP and university counselling. He now seems calmer.
I just want to sleep and do as much as I can, just to avoid 'life'. I am awaiting a letter about my Diep. I also had to get a endoscopy Sun gone {without sedation} to monitor my Coeliac disease. it was really the most awful procedure. Fri I have a DEXA scan too.
How can I get some resolve back to pick my self up.?
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oh my, wintersocks. i am so sorry. you have really been put through the ringer, lately. any one of those things would be sufficient in a single year! but you had several things all at once. i don't know if this will help you or not but i hope so: just remember that whatever you are experiencing and feeling right now will also change. remember? you did start to feel better finally, right? maybe your gp can put you on a different anti depressant. i am talking welbutrin, which also has the advantage of acting like a vasodilator (kind of like viagra) because it gives me more energy! thus also making my blood flow and oxygenation of my blood and lymph flow, that i think also keeps my lymph moving. before taking it, i was sluggish and didn't want to do much, and was starting to not even shower or get dressed. that bad. i attribute it to femara, because when i stopped all of the a.i.'s, tamoxifen, for two months , i felt grand and happy! full of energy! hate taking 'em, but i must. i was taking one a day, but am now on two, and i am way more hopeful and energetic. how come you had an endoscopy without sedation? is that the way they do that?
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Wintersocks - can I suggest you stop trying to do anything and just be from minute to minute......do what you need or feel is right for you literally minute to minute......you have so much on your plate you are in stress overload so can you go easy on yourself and not make any more demands of yourself..........I too am struggling emotionally big time....and ended up in tears in the street again yesterday.......and the person with me commented that the last two years have been so hard of course i would feel like that sometimes - makes sense don´t you think? And you have a lot more going on than me
HUGs from me
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Know that we care winter. This will pass and you will come out the other end stronger. prayers!
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kathec,
The welbutin sounds great, i have never heard of it here. I am on Venlafaxine and Mirtapazine. I will ask her if maybe i should change them and get something else. yes, i was getting more positive I do think that cellulitis knocked me back a bit. I am having days when I don't shower or get out of bed or answer the phone and texts. i stay under the covers with my cat. It is the safest place.
I wasn't allowed to have sedation as I had no-one at home to watch me for 24 hours. I find it hard to ask for heIp. I was given the option to have a throat spray, the tube went down and I was gagging, my eyes were streaming and I was gripping the nurses hand... it was truly awful. I felt it in my guts rummaging around! But the test was normal. I had been having bad heartburn and the consultant said as i was over 50 I should get a scope.
Our weather is unseasonably lovely and warm here, I hope yours is too.
i am very aware I am whining!
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Tim, Thank you that means a lot - really it does.
Lily, It's upsetting to hear that you were crying, Can you understand what is upsetting you specifically? or do you think it is all related to the bc and the last few years? It certainly has been so so trying hasn't it? Sometimes it feels so long ago and sometimes I still feel in the grip of it. Of course your friend is absolutely right, but sometimes we find it hard to see that ourselves.
Yes, I do have a lot on... especially challenging, was my 20 year old, who thought he had cancer...
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Wintersocks, this is the place to whine if ever there was one! It is a minute to minute thing sometimes. I get how life doesn't feel safe anymore. I realized recently that I am angry about everything that has happened to me in the last two+ years. Strangely enough, it helped to write it ALL down while crying. I feel a little better just by doing that. Feelings aren't right or wrong. We judge ourselves so harshly. Praying for you!
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Hugs to you wintersocks, Jeannie and Lily! I am early in the post-treatment aftermath and it is a real bear. So glad we can come here and not feel alone.Does anyone find it remarkable how this diagnosis has caused a big light bulb to come on regarding how we manage our relationships and our lives? Recently I've been feeling as though I've been asleep for the past eight years or so (since I got married and had a child) and that I just woke up after treatment ended this past spring. I find myself feeling angry, frustrated, and often sad about the state of my marriage. I am trying not to put too much emotional energy into it right now, because I am having flap recon in Nov and will need a lot of stamina for that, but boy, I feel like I am seeing my life thru a totally new set of lenses now and it's scary. . .
So glad you all are here. Let's be very gentle with ourselves today ladies!
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W - I cannot talk easily about how I am or the last two years at all, I feel tearful even writing it. On top of all this stuff I am coming up to six monthly check up times........left side not feeling the same etc..........plus......
My plastic surgeon told me he had been at a conference here recently and met others who were doing reconstructions on the public health service so he advised me to check it out (he is private and I have already spent around 15000 dollars on recon). Well he is correct and the hospital and all the doctors and patient staff I spoke to about it basically lied to me........I have lived as a mutilated person for over two years for no reason at all..........I showed the hospital the charter showing my rights two years ago and they told me it was not valid........fortunately I have consulted with a specialist in forcing hospitals to meet their obligations and she has done a formal complaint letter for me and says I should sue them. I am battling on all fronts right now, the stress is enormous and not good for me, relationship is beyond repair and I just want out, money worries etc, in fact just the kind of stress I had in the years leading up to diagnosis, how wonderful is that......meanwhile I am still a freak unable to have a bath as I cannot bear seeing my body, you don´t have to look in the shower!
Plus its bull taunting and murdering season here and its basically sadistic cruelty, they torment and stab young buills in the street until they eventually die....every day I see awful photos of dogs about to be killed in shelters or dogs hung by hunters and it gets me down, where is honesty and kindness and goodness? Nothing really important seems to matter anymore..............
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Wintersocks, I wish I lived near you so that I could care for you after sedation! It sounds awful. :-( Rest well.
Lily, where do you live that they are murdering bulls? I've only heard of that sort of thing in Pamploma.
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Lily, you earlier suggested living "minute to minute" and your last message sounds like you need that same advice. I suggest putting music on - no news - and even wear headphones if you must. There are better days ahead, you've just got to believe that.
Lots of cyber hugs to you today.
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Oh no its tradition all over Spain this time of year, some of them are run around town in the name of fiestas with their horns alight so they are terrified whilst "brave" men chase them, to murder them.......normally by stabbing them to death.......all bullfights end up with the bull dead and they are weakened before the fight by having their shoulder muscles cut by lances........I just hate animal cruelty
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Lily,
It is very upsetting to hear that you continue with sub=standard medical care and that your rights are not honoured as they should be, that is just not right. . Fighting against the medics is just soul destroying. I am so sorry that how your body looks and feels causes so much anguish nearly 2 years +. that is a lot of sorrow and heartache for one person for so long... I so wish there was more help for you, for all of us when those dark clouds roll in. I too share those feelings. I look to the Diep to restore the trauma of losing my breast, and it may well lessen that trauma. However, the sting of being dx with cancer, well it just continues to make me feel incredibly vulnerable.
My youngest son, just 17 spent the summer in Malaga with his Dad, he triumphantly told me he had attended a bull fight, I was deeply shocked and saddened and disappointed and told him so . I intend to take it up with him again. he is causing me untold stress at present.
lily, it is wonderful to come here and tell it like it is, as I have done many times. The women on here have dragged me back to life when I felt it was over. We all know how it feels. I am sending you a massive hug and hoping for better times for us both and anyone else here too, who needs that.
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Lily, are you a Brit in Spain? My daughter lives in Madrid.
It's hard for me to respect a country that has such barbaric practices.
Bull fighting is disgusting.
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Tim yes I am and I am active against animal cruelty and pro animal rescue, Spain is a corrupt third world mentality where rights only exist on paper
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