Why was I stronger DURING treatment than I am now?
Comments
-
Lily,
we hear you and most have felt this lack of hope. It is times like this that you must picture
all of us holding hands in a big hug circle around you sending you support and
love. Including those like me who keep
up with this wonderful thread but can’t always chime in (I’m at work). Today I just had to stop and chime in today. You, Lily, have been there for me when I
felt really low. You are an
understanding and compassionate comrade.
I want you to remember the part of yourself that knows you are unique and
worthy of love. Please hang on.... Keep expressing yourself here when you need to; we get it.0 -
Lily,
don't give up, please exhaust all the support you can. Like BB I have had such a difficult time really all my life and then bc came crashing in. There are still overwhelming times when I so want it all to stop. I am bone weary and joyless. I am trying to find that chink of light that keeps my head up, I find my solace in the small things that we all take for granted, music, reading, trusted friends, nature. I have come to accept much of what has gone on for me and that brings a kind of peace, It gives a break from the emotional turmoil of constant 'what if's' On this thread we have all known you a long time and we all want for you, some joy and peace.
Hang on in there....
0 -
BB - let me give you a taste of health service here
Patient to Onclogist - !I am not good, I cannot sleep properly, I cannot move in the mornings as my joints are so stiff, I am permanently exhausted, I feel so old"
Oncologist - way to deal with this is to walk and exercise, you are depressed
Patient - but I cannot walk as my joints are too stiff it can take over an hour to be able to walk in the morning
Oncologist - its not the medication its you
6 months later patient arrives
I am doing well Doctor, I stopped the medication and can sleep now
Oncologist - "well we dont want to put you back on that medication if it "tortures" you so much do we" but you must take something as you are such high risk as you refused chemo.................you are very high risk of recurrence
Patient is still taking nothing, aware its ony protocol and statistics that matter..........and she is out of their neat little box
Patient shaming is what they do, there is NO choice of hospital, Oncologist or anything, why not offer support instead of condemnation?
ZERO chance of referral for earlier recon............
I am not depressed just facing reality. Drank a lot of gin after my weekend posts, not done that for years but felt better next day and no hang over......weird. Drinking more red wine than before now.....
I do feel heard here, thank you, but I still think there is only one solution to this hell.......I was contacted by a stranger via facebook who talked about feeling suicidal, weird or what? It seems he is God fearing and wants love......but only existed a few weeks ago...........
No land line where I live and cannot afford the 902 helpline but thank you anyway Mods
We fight so hard to survive but it realy is not life as we know it, its a bastardised form of living that has limited satisfaction, and I am very very cynical about the cáncer industry, and I choose my words carefully.
So this is the reality and mentality I am dealing with..................families are supposed to support you here, but I don´t have one here
0 -
Beautifully said Winter. Thinking about you.
0 -
Lili I so understand feeling at a loss. Depression sucks and it is an incredibly convincing liar.
It tells me I am worthless, hopeless and life will "always be this way" or worse.
I literally have to say out loud sometimes, stop lying to me, when I am in a severe depression. Which has happened two or three times since I was diagnosed three years ago.
I recently dropped back into depression late this fall, after feeling really good this past summer for the first time since I was diagnosed.
I think because I felt so good and thought I would never return to depression this time almost hit me the hardest. I have really isolated.
I am on nti-depressants and recently increased my dose. I also am going to reach out to get therapy again.
And I returned to these boards where I not only receive understanding and support from all of you but I see myself and the insane lies that my mind/depression are telling me, more clearly then ever through what all of you write.
Let's all reach out and grab one another by the virtual hand and remember that the cancer, treatments, side effects and all the other crap is something we all do get. We are not alone. You are here for me. Reading your post these last few days actually helped remind me of that. You helped me from across an ocean without even knowing it.
I think that is the gift we all share in this shitty journey. Please know you can always write a personal message and I would be happy to share my phone number or email. Others would to.
I need you and so do so many others.
Thank you for being here for me.
Take care,
Julieho
0 -
My dear Lily, I hate to think of you in such pain. I've struggled with depression all my life, and dealing with breast cancer has magnified it. Between the stress of dealing with a serious disease and the mood changing side effects of hormonal therapy, it's been very difficult. I've had thoughts of harming myself some days. Please, Lily, remember that we all get it and are surrounding you with our love and support. I feel like I "failed" at cancer too. I'm not the brave cancer warrior keeping a positive attitude through it all that the media tells us we're supposed to be. Is there a charity that offers counseling where you live? Or a member of the clergy that you would be comfortable talking to? (BosumBlues, I was going to suggest you check into Catholic Charities. I got low cost counseling through them in the past. You don't have to be Catholic. I'm not.) Lily, please hold on until you can get reconstruction. It made a huge difference to me. I know you feel like you have no one who cares, but I bet there are people around you who care more than you realize. From the black hole you're inn it's just hard to see them. And we care. I wish I could fly over there. We could share a pitcher of sangria and forget about cancer.
0 -
I try and hold on, tell myself i will be healthier by the time i get there but 3 years from now is the EARLIEST they will even START the recon procedure which will take at least a year to complete......so December 2018 if I am lucky from Spring 2012...........that is assuming they don´t cull the service between now and then as there are so many cuts........so there is no real hope of recon, just some kind of faint dream based on something I was told a year ago................and ti could be another year on top to wait......
I do appreiate all your posts, thank you, I don´t feel as alone but am sick and tired of struggling to feel like I have a ife and sick to death of positivity messages...................................I am having counselling, have done for a year but that was referred to as anorher failure "are you still seeing the charity psychologist......"
0 -
Lily, my depressions were so low when treatment was over. I hide in my closet and would stare at my belt thinking all the pain would go away. However, I did hang on (as painful as it was) and eventually the weight lifted. I can say that anti-depressants don't work for me and the fact they can take up to 8 weeks just tosses them out of the equation for me.
The one thing I found was using Adderall (Ritalin) for a few days. I had some of my daughter's older script and decided to try it since I had read about some stage 4 ladies using it for fatigue. Well, it worked wonders and after taking 5 or 10mg, I was back to myself very quickly. My doctor now writes me a script (probably once a year) for it to use "off label." You may want to try it.
The worst thing thing that could happen is that it doesn't help and then of course you don't use it again. There has also been research on Ketamine, which I belive is the drug Extasy. They say it also gets you out of the dark hole and makes it easier to get back to yourself. Since the Adderall helped me, I never tried the other, but I would in a heart beat if I was looking up at that belt again. Good Luck.
0 -
Lily, whoever made that comment about seeing the "charity psychologist" needs a heart transplant because they obviously don't have one. Or a brain for that matter. I would cut that person out of my life because they are toxic.
0 -
Hugs to Lily. I remember thinking...Holy f*ck...I survived cancer so I can just feel dead. My normal is gone and the world just wants you to move on. Then sometimes it's the little things like a good bar of chocolate, the smell and sip of a good wine and you think OMG...just a moment of enjoyment. Sometimes joy is in the little things
0 -
2TAbbies - that was the Oncologist....!!
JJ - I used to enjoy those Little things but not these days although I did enjoy a few minutes of a dancercise class today........so I am not just sitting staring at the floor in misery, but doing things i used to enjoy are just not hitting the spot........
BB and everyone - thank you - I do believe I SHOULD be over this now.........yet its a rollercoaster with deeper lows and shallower highs, in fact high is a huge exaggeration, non low is probably more accurate.....
0 -
Lily,
Sorry I think I wrote your name incorrectly when I posted the other day - I really could identify with your "non low" vs "high" description. I think that is the essence of depression. The things that usually made us feel good, or just put a smile on our face don't and instead it is just sort of an empty, numb feeling. Which is better than the rest of the time when we are feeling really low but not even close to anything like happiness or joy.
This particular board is so good for just that reason. Not that I think it is good that there are many women experiencing post treatment depression, but, it is helpful to have a safe place to air it and to know that others identify with it. For me, I can feel so crazy, ungrateful, almost selfish for being so down and numb to life right now.
I keep telling myself, this too will pass, which with time, for me some increased medication and therapy it likely will. It is discouraging to know that I returned to this place after having what I thought was quite a turn around this late spring/summer. I had a total of 6 surgeries for reconstruction before and after chemo and finally last spring felt like I had physically healed from the DIEP surgery, the implants that caused me so many infections and pain were gone and my strength and energy returned. Not quite to pre-cancer days but I really did feel pretty damn good all summer.
My daughter got married in late September and I stayed and cared for the light of my life right now, my two year old grandson for several weeks in the early fall and then returned home and BAM, it was like someone through a heavy, dark blanket over me. My spirit, energy, joy response and crazy brain (which are the onslaught of lies I tell myself about how worthless I am) when depressed came on almost instantaneously.
As I mentioned in my post the other day, thankfully after several weeks of really isolating, suffering and feeling deeply shameful and trying to hide my depression from everyone, probably including myself I remembered these boards and reached out. Just reading and hearing from all of you about your own struggles, even several years after diagnosis and treatment really helped.
Yesterday was the one year anniversary of my having the DIEP surgery. It sucks that right now I am in such a funky low spot, especially after really feeling good but it is what it is and I am not alone and not a horrible person because I feel this way right now. The holidays make feeling low even harder in some ways. I haven't done any shopping, baking or celebrating and the closer to Xmas it gets the crappier that makes me feel. But, I am trying to instead look at my NOT doing those things right now as "self-care" instead of being a loser and shitty person. Last year I didn't do anything other than lie in bed and heal from surgery. I didn't feel guilty because I felt like people understood. This year I just have to remind myself that what other people think isn't important. If I have the energy I will do it, and if I don't I won't and will work hard on not beating myself up for it.
One thing cancer has shown me is life is unpredictable, I don't know what tomorrow will bring and whereas depression stinks, hating myself for suffering from it is NOT a healthy response.
It is clear Lily that you are valued and loved by so many of us. Please keep coming here and reaching out. You are helping others and hopefully we in turn are helping you.
Much love,
Julieho
0 -
Hey Julieho,
Hello and hello again! It's lovely to see you back and I was only thinking of you the other day and your lovely animals. Please don't disappear for so long again. A big welcome home !! it is a year since my Diep on the 17th..Can we compare notes sometime?
Lily, see, you have brought us all back and talking again!, you can see so many of us feel as you do, I went out to eat tonight and I just tuned out of all the noise and merriment and I desperately wanted to be home alone again and hiding.
Hello there Purl! .
I am too tired now to say more as it is 1 in the morning here...
I hope for better times.
0 -
JJ, I know just what you mean. Some days I have that feeling of "I got through cancer just for THIS?" Fortunately, that's not most days. I do have a lot of those numb days that Julieho describes. In my case, it's better when I don't have to go to work, but I have to tough that out for another year or two.
Lily, if your oncologist meant that comment about the "charity psychologist" as an indication that you'd failed at something, it's time for a new oncologist. Is that possible? Or maybe he/she didn't realize how it sounded? In any case, I'd bring it up and tell him/her how it made you feel. There are not "shoulds" in this game. We heal in our own time.
Julieho, I know those feelings of worthlessness well. Mine go back long before cancer and its depression. Don't know where they originated. I hope you make it through the holidays easily.
Winter, this whole experience has made me more of an introvert than I was already. I'm glad you were able to go out to eat tonight.
It's good to hear from all you ladies.
0 -
Wow it is so good to see some familiar names back on this board. Wintersocks, RockyM and 2Tabbies I so remember all the help you have offered me.
It is good to be back although I wish I had stopped in from time to time this summer when I was feeling really emotionally good just to let everyone know that we have good times ahead.
I am struggling again but I know it will get better and seeing all of you on here and being reminded that I am not the only person who struggles so helps me.
Sending love to all of you,
Julieho
0 -
Julieho, you definitely aren't the only one who struggles. Welcome back. Some days are good. Some not so good for me.
0 -
Oh 2Tabbies, I am sorry to hear you have Waldenstrom's macroglobulinemia. I looked it up, not nice. How did they find it? Was BC in your lymph nodes or WM or both? Never heard of WM until I read your dx.
Here's this:
A good resource for finding out about waldenstrom's macroglobulinemia clinical trials are; The International Waldenstrom's Macroglobulinemia Foundation.
0 -
Bosum - yes, I do sort of. I don't enjoy things that I used to. I fake acting like I'm fine in front of other people. I feel like I've been left with this broken and depleted body. This is not the life I fought cancer for. No one told me that I'd have so many complications after treatment ended, or maybe it wouldn't have been such a blow.
0 -
No one told me either, which is why it's so hard to take...
0 -
Just found out I need another stereographic mammo to biopsy some calcifications...I feel like throwing up. booked for Jan 13th and an MRI for Jan 14th. I'm so friggen done with this crap. My stereographic mammo earlier this year was a blood bath. It was literally like a sewing machine...like ....F*CK!!!
0 -
JJ is there another facility that you have it done at? Just saying. Or give them hell about it and demand something be done to deaden you up better.... If they refuse, I would coat my tit with some type of numbing agent and saran wrap about an hour before hand.....
0 -
The last time I was given nothing because they couldn't dilute the sample area....I'm going to ask about Emla cream...it literally made me sick to know I have to do it again. Calcifications are in my bad boob...somehow missed last year. I am regretting not having a mx....I'm also away for the holidays...sunny Costa Rica. My last day of work my boss (who approved my vacation otherwise I would lose them) called me at home to say "in the New Year I need to start living up to my full potential because it's been 3 months since I've been back full time) Out of those 3 months I've had pneumonia for 6 wks, a DH with SAD kicking in, a MIL from hell, plus we moved in July....I'm friggen tired...and now this new biopsy. Sorry...I'm just venting...I feel like running away...but I already did!
0 -
JOntario, What's the MIL doing? Can you quit the job? Not very nice of boss to stress you out before vacation....
0 -
JJ I have to say your boss seems like a real tool to say that before you go on vacation. I have found that letting go of people like that in my life is important whenever possible. Sometimes of course it is not, like if they are your boss and you really need your job, but, if that is the case at least move your boss into the "I don't value you or your opinion" place in your life.
Hope you have a great vacation.
Julieho
0 -
JJ, your boss is an idiot and apparently one of the fortunate people who has never been involved with someone who had cancer. Ugh.
I'm lucky; my manager's mother died of cancer so she understands and fully supports me. It's the medical community I have a problem with. It's like going to battle every time I see a doctor. I realize I have a complex file (my doctor yesterday was kind enough to say that I've "had it worse than 90% of the people they see", but wasn't willing to sign off on my continued time off. My migraines and BP are under control, so the rest is psychological and so I need to see a psychiatrist for that. I ask why he sent me to a psychologist three months ago if he felt that I needed a psychiatrist. He says "she's for chatting; the psychologist is an MD" like that answers the question. Who knows how long that referral will take - it took months to see the psychologist and the dermatologist. My list goes on and on. I don't know why doctors, especially GPS who I don't expect to know everything, don't trust us to know our own bodies.
* When I was gaining weight I said I had a thyroid problem. No no... calories in, calories out. Six years later, my weight has doubled, they finally send me to a specialist, and in two weeks the thyroid is out. Thyroid cancer.
* I'm tired all the time, a change for me as I don't usually need a lot of sleep. Again, GP is insistent that it's leftover from cancer treatments. I want a sleep study, which the oncologist agrees to. Turns out, my sleep is interrupted on average 88 times per hour. I have sleep apnea.
* When I was spotting my GP said -- oh, normal, breast cancer, etc really puts you through it. Next day I'm hemoraging, at the Emerg, and now being sent for biopsies and scans. Yep, pre-cancer in the uterus, so that, the fallopians and the ovaries are all out.
* GP argued with me about my skin, said it was a yeast infection. OK, in the stomach folds, I can understand but under my feet? I checked online and sure, plaque psoriasis and inverse psoriasis. GP has never heard of inverse psoriasis, but finally refers me to a dermatologist (saw him yesterday). Yep, I'm right again. Meanwhile, my feet are literally cracked and bleeding, as is my stomach fold, behind my ears, and some spots on my scalp.
Thankfully, the GP I had (for a very short time, between the time he retired from the Armed Forces and moved from my province) was right on top of the inflammatory breast cancer. As soon as I had symptoms I went straight to him, he went straight to assuming it was IBC and sending me for baseline tests, etc. right away. I was getting scans within two days! So when it was confirmed, they could start treatment right away.
Sorry for the rant... I guess this is what an appointment with my GP will do to me, and I know that many of you have been through it too!
0 -
Thanks for your support everyone! I've been at my job for over 19 yrs. the benefits and vacation time keep me there. My boss is relatively new. I've always done well there but the last few months have been painful. My MIL thinks I should have done a mx....taking no consideration for the fact that just 10 months prior I spent 10k and had breast augmentation...just because I always wanted boobs and my last baby was off to university...what a joke...mentally I'm just so drained...but you guys "get" it...
Dee...your road sounds rough...but you sound tougher...glad you are getting answers...and I know how some people can push those buttons!!
0 -
JJ, in my rant I forgot to say... I'm jealous! We went to Costa Rica over the holidays in 1998 and it was gorgeous. We were with a small tour group (8 adults, 4 teenage boys), and went to San Jose, Tortuguero, La Fortuna (the boys spent Xmas eve on Arenal volcano but I wasn't up to it), Monteverde, Quepos, and then back to Tortuguero (because we loved the jungle so much!). I would love to go again.
So have a great trip!!!
0 -
Dee...we bought a little place in Playa del Coco 2 yrs ago...just 30 mins from the Liberia airport. I've been to a few places you mentioned (Arenal is about 3 1/2 hours away.) We love it and this time we are here for 25 days with our youngest DD joining us next week. I just need to pound the beach and walk away some frustrations. I now have to be super careful with the sun...sunburn and a biopsy will suck...not to mention how rads has and is still affecting my skin. Feliz Navidad.
0 -
JOntario, your MIL wants you to live? Imagine that! : ) I am an MIL and not doing so well with DIL lately.
0 -
Marijen, yes, Waldenstom's macroglobulinemia is a weird one. The first hurdle is learning how to pronounce a disease most doctors haven't heard of since med school if then. I found out I had it when I started getting cold induced hives. A very alert allergist confirmed her suspicions with some blood tests then sent me to a hematologist for a definitive diagnosis. That involved a bone marrow biopsy which isn't the most pleasant way to spend a half hour. In Waldenstrom's most of the malignant cells are in the bone marrow not the lymph nodes. I'm actually a member of the organization you linked to - the International Waldenstrom's Macroglobulinemia Foundation. I haven't yet been treated for WM. It tends to be an indolent disease and may sit and "smolder" for years before it does anything. So I am on "watch and wait" status. Or watch and worry as some of us call it. If I get symptoms that are problematic, then I'll need treatment and would consider a clinical trial. So it's not really been too much of a problem yet. Just another thing hanging over my head. I did have some bc micromets in a few lymph nodes, but that's unrelated to Waldenstrom's. The only possible relationship is that Waldenstrom's puts you at higher risk for other cancers.
0
