Why was I stronger DURING treatment than I am now?
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thank you!
I did try and contact a dermatologist, and was ltold they couldn't help me out, in the meantime I'll get a referral from my family doctor and hopefully that will go better thanks for your advice is always
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had my appt, too upset to even post, cried during it and all the way home afterwards, tears just would not stop, just as a taster for you it seems I am "maladjusted" to my state and need to get over it, no hope re the pain, its forever, and I must learn to trust the doctors, even when their comments are not logical.....
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Lily: - my heart goes out to you. How could any doctor be so cruel. Please post more details about your appointment when you are ready.You probably know more about BC than him. Is the doctor old? I would totally find another MO you can trust and ready to discuss your concerns. I actually "fired" my first MO because she was not the right fit for me - and I knew that I would have that doctor for the rest of my life. Hugs to you! Lisa
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Hi Everyone....I have just been catching up on all the posts I have missed. Truthfully I feel like I'm hibernating from life in general. I'm still off work...getting ready for my hysterectomy on April 15th. Seen my family Dr last week and asked his opinion on maybe keeping one ovary. He is against it totally....there is still a cancer risk...they won't know for sure what's in there til they start pulling stuff out. Like ....I feel like screaming because I was originally told "it's just a very large fibroid". I'm just so tired of feeling tired, sick of the anxiety...I really do miss the old me and I'm so afraid of falling apart due to lack of estrogen....My birthday is coming up. Last year I spent it at the hospital getting rads, this year I will be recovering from the surgery...I just want to be done. So hibernation is helping me cope...or delaying me from dealing with "life". I'm sewing (finished another quilt..treated it like my new day job!!), I'm cooking, I'm reading...and mourning the loss of ovaries. What a pity party...first my boob, now this. I'm not yet 45...and sometimes I feel so bloody hell old. Hugs to all.
J
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just catching up on all of the posts. Not much new with me these days.
Jjontario, I understand the disappointment of hysterectomy & losing your ovaries and tubes while young. I had my hysterectomy about 6 years ago (before cancer) because of fibroids. Last April I had to have my ovaries & fallopian tubes out because of a tumor on my right ovary (not cancer). Truly both surgeries were easier than I thought. I hope yours is the same. Good luck.
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I also fired my first MO. He was old which I thought would make him more experienced, but he just acted really flippant about the whole situation - as if this cancer was no big deal, etc. He was looking at my path report and said, "How did this happen?" I thought, WHAT?! Cancer just happens! I'd had a mammo 6 months earlier so it's not like I wasn't mindful of cancer. My maternal grandma died from breast cancer. My second onc was amazing! He was much younger and very compassionate.
JJ Ontario - I am SO sorry about the ovary. It must be hard to lose one body part, then another. Our poor bodies are old really. I heard treatment ages the body 10 years and sometimes I feel like it's more like 20 years! It sound like you're doing all the right things to cope though.
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Hi: So I had my PET scan on Thursday. I am drained, but I am waiting for the results! Even after all the tests during these past 3 years, I am still paralyzed with fear. Now I have to wait another weekend for results. I hope to have results on Monday. It is never easy. I hope everyone is doing well. Hugs. Lis
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Hi all, I'm trying to catch up with all the posts since I haven't been here in a little while.Nothing too much new with me, except I agree with those who mentioned PTSD. I recently found out that an online friend has been diagnosed with bc and going through hell with chemo. She's almost done with that, and will be having surgery soon. She asked for my input on recon versus no recon. Just thinking about that brought back a lot of really crappy feelings that I thought I was over. Did not expect that. It didn't last too long, thank God, but I guess you never know when some of the crappy stuff might reappear.
I'm so sorry that some of you are still suffering so badly.
Lily, your oncologist is an idiot. If you're truly "maladjusted" to your situation, his job should be to help you get adjusted not tell you to just get over it. There is no just "getting over" this trauma. I do hope you can look into changing oncologists.
JJ, I'm sorry about not being able to keep an ovary. I was just 45 when I had my hysterectomy, and also wanted to keep an ovary but couldn't. So, I get it. There are some things that can help with the menopause symptoms. I was able to take estrogen until diagnosed with bc. Then of course, I had to stop and was really stressed at having to face that loss again. Effexor has helped quite a bit with hot flashes and mood swings. It wasn't enough so my MO added gabapentin. That has also helped. Hang in there. You might be lucky and not have bad symptoms. Not everyone has a tough time.
LiLi, I hope the weekend goes by fast, and you're able to distract yourself with something relaxing. Most of all I hope the results are good.
Hang in there, everyone, as best you can.
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2Tabbies: Great post; big hug. I think that circumstances and surprising odd things will always trigger memories for each of us for a lifetime. I hope to be able to remember that "go to" thought/prayer after sad or worrisome thoughts are felt. I hope to embrace and feel them knowing that they will pass and are necessary. And get outside a lot more. Love you all you ladies, Purl.
Lily - We have your back.
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Oh EEM you are so absolutely right! Words to live by!
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I think that all the feelings that people have written about are normal. They're just hard.
I've felt unusually depressed lately, then I realized the anniversary of the end of chemo is this month. I feel like I should be doing better emotionally. I was told anniversaries like this are hard for patients. My treatment really dragged on and on after chemo. I had my surgery afterwards, complications, radiation, more cancer scares and complications, then the rest of my recon in Feb. Maybe it's ok for me to not be doing better emotionally.
This sucks.
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Well - I received the results from my PET Scan yesterday....bad news... the suspicious mass located at right lower lung lite up, which means it is likely --- or should I say ... it is cancer. It must removed, and I already have a surgical consult with a thoracic surgeon for next Friday. I am asking myself - can I handle another cancer journey.....? They will not know whether it is metastatic BC or a new cancer until they remove it and perform a pathology. I am just so tired from the past 3 years. I have not broken down yet - I am just numb.
Catlady44 - I echo your sentiments. THIS SUCKS.
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THat is just plain rubbish Lili-ri, so sorry, of course you will find the courage but it will be hard on you, like last time, I cannot find words just Reading it so no wonder you feel numb................hope you let us all support you as much as we are able to?? Big Hugs.................
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I am stomping around feeling so upset for you Lili...............
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Gosh, I am so shocked and saddened to hear this news . It's such a shock I am not surprised you feel so numb, I expect the 'emotions' will come soon.
Please know I and others are here for you.
Hello Lilly x
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Lisa
– You know we are all surrounding you with clasped hands in a circle of love
and prayer. It must feel like, “here I
go again”. Is there a chance that it is
benign? My benign thyroid nodule lit up
on my pet scan. I wish I knew the words
that would comfort you right now. As you
know, this thread is the place to come and express yourself and feel empathy
and acceptance. Many like me, view from
work and can’t always comment, but know with all your heart that we are all
here thinking and hoping the best for you.
Huge Hug ~~ Purl0 -
Lili-Ri,
Dammit. That is so unfair. Fu*cking cancer. I agree with Lily55 is right when she says you will find the courage. You may still be numb, or angry and all those things you have every right to be, but somewhere deep inside your inner warrior is picking up her sword, and dusting off her shield. I find that it is helpful not to think of cancer as a 'journey'. Instead, someone told me once, I should think of it as a process. And take it step by step as you would any kind of job. This is a shitty job - but one nonetheless.
I wish I could hug you and bring you a cup of tea, but I'm joining the circle of love and support and strength.
Janet
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LiLi, I am so sorry about the bad news. This absolutely sucks. Damn it! Numbness is probably a blessing at the moment. Just know we're all here thinking about you. Come here and rant, cry, whatever you need to do. Like Janet, I wish I could be there to give you a hug or just sit and be present.
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Lili, I rarely post these days, but your news is so scary being numb makes sense. I'm still hoping that it is a false positive or at the very least, very treatable (if the latter, this group of ladies will be here for you as they were I the past! Stay connected here.
Hugs,
Peggy
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Thank you all for your kind words of support with lots of hugs. My initial consult with a thoracic surgeon is next Friday. I need to know everything. I am hoping to push the surgery to mid-May as my eldest niece is graduating from Tulane - and I don't want to miss it. I have already bought plane tickets and booked the room. This is another thing I hate about cancer - you can never plan anything. Thank you again to everyone. I will keep you posted.Hugs and Love, Lisa
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LiliRI - when I read that I thought, NNOOOO!!! I'm so sorry! Pisses me off at cancer. It's just evil incarnate.
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how did your appt with the surgeon go Lili?
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Hi BB, Lili where are you? ARe you ok?
BB I have been taking a natural anti inflammatory for almost a month now and after 3 weeks the intensity of my pain has reduced by about 50%, I cannot take natural anti inflammatories due to another health condition. Like you I am up against an inflexible system here, just as an example, I was not given a high grade of disabiity score as my physio report saying how limited I am in terms of the Jobs I am able to do, was a private one, I need a public system one but the waiting list for appointments with them is over two years, hence why I go private......like so many others...........and if the UK leave the EU I will probably have to leave the country I have lived in for 14 years......................I am managing by living day by day and sometimes hour by hour but financially it is very difficult...................
Li li please tell us how you are
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Sorry Ladies for delay in sharing with you my experience with the thoracic surgeon. It was the 1st time I actually cried following the appointment. His first words were "why do you want lung surgery?" - Of course I do not want it - but my 2 doctors have recommended having this tumor removed. No discussion of past or oral history - he looked at PET Scan and said - "if the tumor is cancer - it would be Stage 4 anyway so no use in removing it"....he asked what do I do on weekends - and I said - I rest so I can get through another week of work.. He responded that I should go out with friends...sports etc. I think by then I was not even listening anymore...He said he would speak with my 2 doctors - but he thinks I should have another lung biopsy! So here I am - frustrated, tired and gearing up for another painful procedure. It has been 8 months since the tumor was detected..I still have a partially collapsed right lung with fluid and a tumor at the base. WTF. I am now waiting to be scheduled for another biopsy. I have no answers. I feel so beat up.So - no real news to share.
I know we are all experiencing issues with post-treatment problems and depression.
I am single and alone.....sometimes I need a hug!
Sending you all virtual hugs!
Love, LiLi
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LiLi: "Why do want lung surgery?" ~ Doctors can be so clueless. I see it's coming up on three years since diagnosis. What a three year trek you have been on. Please know you are in our thoughts and hearts. Thank you for your virtual hug but right now I am sending a GIGANTIC one to you. Along with all of us! Love Purl This pic says it all!!!!!!!!!!!!!!!
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OMG. Can you request a new Dr?
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Lili...I am sorry you are in such a spot with such a clueless doc. That blows.
I had blood work last Monday, and my follow up with my Med Onc next Monday. Not too worried, I saw my hepatic panel (my liver is a little more happy) and regular blood work (wbc is low, but others all good). Of course they don't release my tumor markers until after my appointment. I have an insane bruise from the blood draw...hoping that is just operator error.
All other stuff is status quo. My work is still too much, they continue not to reduce it. I have up to 3x what my co-workers have. I keep documenting, but I am overwhelmed & discouraged. It has been 6 months and no change. I need my health care and FMLA access. I am so exhausted each week from working 12+ hour days that by Friday that all I want to do all weekend is sleep. I am not able to do anything for myself and my hubby, that is causing a lot of arguments...but what do I do?
I am active in my local Young Survival Coalition, but I have had trouble getting to meetings because of work. A gal in our group went into hospice a couple weeks ago, and passed away yesterday, that is hard.
I hate all of this breast cancer crap. I want to be positive, but I am also sad for all of us. I hate that I have lost 2 years of my life, my trust in my body, my breasts, my hair, my ovaries, my mood, my relationship with my husband, relationships with my friends....etc
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Li-li all doctors should be MADE to do empathy courses and MADE to put themselves in patients shoes, that is so NOT ok....................I recently had such a harrowing appointment with my Onc I cried during and after all way home and still cannot talk about it. He pooh poohed me saying I thought I needed a colonoscopy given what has been going on with me for months and said "Stop thinking cáncer all the time" I said I am not but it is clearly something and I want cáncer ruled out. He gave me the leture about protocol not requiring one (despite me having the syptoms people are told to look out for) and positive thinking. Anyway I went off to stomach doctor and guess what! First thing is a colonoscopy........and I did not even have to mention the Word it was as an automatic........................so what the heck do they know. Can you get a second opinión?
BB - it stinks I was told lately that only public system reports are any good for disability as pruvate ones can be faked, BUT the waiting list for a public report on my back is TWO YEARS...................private report says i am more or less unemployable with my limitations
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Lili-Ri - I just want to say how sad I am to hear that you are going through this again. You mentioned being alone, I live in Vermont, which isn't next door, but is only a few states away. If you need someone to go to see your doctor and want support let me know. I am currently in LA visiting my grandson but will be back next week.
I am especially frustrated to hear the response you got from the thoracic surgeon. The question he asked was beyond inappropriate. I know that you are absorbing a lot of information right now and I know for me becoming overwhelmed makes it really hard for me to process what I have heard or need to consider. So please know that I mean it when I say I will travel down to be with you if you want some company or someone to hear what the doctors are saying with.
It is incredible how much all of you have done for me these past 3 1/2 years. It has been a crazy rollercoaster and I honestly felt that once I found these discussion boards, especially this specific one, I felt like for the first time I wasn't alone, crazy or a cancer failure. We are bombarded with "survivor" and "she is so strong" and how amazing we are when most of us feel like this is way more then we can or want to handle a lot of the time.
So please message me and I can share my phone number and we can talk if you do feel like you want some company or help with doctor appointments.
Sending love to all of you beautiful women.
Julie
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Thank you so much everyone! I truly mean it. I have had a tough couple of weeks since that appointment. Now I am scheduled for another round of lung biopsies on Monday in RI. I am actually grateful that finally this is all moving forward due to my wonderful lung doctor's hard work. He has already spoken with the radiologist and reviewed all scans including the PET scan - together. What a thought - communications between doctors...So next week I should know if the tumor is benign or malignant. Finally - an answer to a question, which I asked months ago. If it is benign - I will party like its 1999 - and if the tumor is malignant, I will party like its 1999. A little cancer humor! I promise to let you all know the results as soon as I receive them. Love to all of you ladies! You are always by my side! Lisa
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