Why was I stronger DURING treatment than I am now?
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Bosum, I'm glad you're feeling better. It is a struggle though, isn't it. I haven't exactly had a tragic life. Sometimes, I want to tell myself to just get over it. Things haven't turned out as I planned either in a lot of ways. My "career" has been a bust. I've had cancer 3 times. There have been a few other disappointments and frustrations, but not the tragedies some people face. Even my bc, although a stage III, hasn't been as bad as what a lot of women go through. My chemo wasn't very hard. My reconstruction has been relatively successful (very successful in my PS's eyes). I feel bad that I'm not happier about it considering there are those like Lily who haven't been able to get recon or whose recon has failed. Yet, I find myself so cynical and depressed at times. I don't trust my body to ever be healthy. Sometimes I get so angry at it. My therapist is trying to help me dump the anger, but it hasn't worked yet. I've tried the gratitude thing. Sometimes I can manage it. Throughout this bc whirlwind, I've had so many people say I'm strong, brave, etc., but I never feel that way. Then there are all the inspirational photos and essays saying how beautiful we all are no matter our scars. I don't feel beautiful in any sense of the word. Sometimes I'm ok. And sometimes I'm a right mess. But you're right that we have to keep trying. One thing I can't do is just quit even if there are days when I just want to curl up on the couch and pull a blanket over my head.
Ok, now that I've had a good whine, I hope everyone has the best day possible tomorrow. I hope something good happens to all of you. Even if it's only a smile from a stranger, it's something.
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I found out this week that I am going to have to undergo surgery to remove a large kidney stone. This will require that I change antidepressants since the one that I am on causes retention of urine. This is also after I finish treatment for a severe sinus infection resulting in a pus-filled sac inside my mouth. This past year I have had a lot a big stressors including selling my house, moving from VA to NC, reduced contact with my grandson due to the latter and not yet replacing friends that I can't see because of the move as well, and a relatively poor pool of qualified MDs where we moved.
This morning as I face next week's round of activties related to health, I feel like crying. I feel sad for my self and for my poor body. I also want to scream and break dishes. In my more sarcastic moods I tell people I am now retired but have a second career seeing doctors.
I am lonely, have been stress eating and gaining weight, not exercising enough.
I am sick of it all! This life is what I fought for with all the crap related to chemo and double mastectomy especially.
I AM MAD. I know I'm having a pity party but I REALLY NEED SOME SUPPORT FROM MEMBERS OF THIS DISCUSSION BOARD! HELP!
Thanks for reading,
Peggy
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All: Just checking in. Things going pretty well for me....body/foot pain with anastrozole, but tolerable. Trying to live healthy, and am very grateful for getting through my particular BC without needing chemo, and without mastectomy. Summer is here, and I LOVE the warmth and beauty of it.
Am noticing, though, that my mood isn't great...something just feels so different than before. I feel so vulnerable...physically and emotionally. Just kind of scared and tentative. Am having trouble concentrating on small (but important) things like reading a book...my mind feels so restless and unable to focus very well. I feel needy. Am not accustomed to this way of being. Am trying to "listen" to its messages and make some changes in my life: be more connected, more involved. Not take the days for granted. Be closer to my husband and family.
I sooo want to see this as an opportunity for needed change and growth. Maybe a key is patience and deep compassion for self. I do think this phase of this journey will pass.The patience part is hard!
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Coming to the end of treatment. 5 months of chemo, masectomy and 25 rads, 5 boost. Finishing rads next week. And now i'm an emotional mess. Plus physically wrecked. Unlike some, they have thrown the kitchen sink at my breast cancer, though I'm glad for it, I now see the toll on my body and mind. this sucks.
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Valstim: Just saw your message. This does take a huge tolll...You are right. I am thinking of you today with big, big hugs. Know that you are not alone...that people here care about what is happening with you and routing for you. Good luck finishing rads next week.
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Bosum, good for you on turning negative thoughts into positive. I've never mastered that. I've never been an optimist, but always considered myself more of a realist than a pessimist. I can't say that anymore. Do you have some examples of a positive aspect you've found in some crappy negative experience? Maybe I can learn from your experience.
Peggy, I'm so sorry about the kidney stone surgery and the sinus problem on top of all that you've already been through. That's a lot of major stressors in the recent past. I've been away and just saw your post. I think you're having your surgery this week. I hope that at least it's going well. I think we all understand how infuriating this must be. I also feel like I have a second job seeing medical professionals and trying to maintain what's left of my health. It's gotten really old. I hope you stop by and let us know how you're doing. Hang in there. We're holding your hands virtually. Wish we could do it for real.
Girl53, you're only a few months out of active treatment so it's not surprising you are still adjusting. I understand the vulnerable feeling. I just don't trust my body anymore. As you said, patience is key. Be assured, you aren't alone.
Valstim, yes, this definitely sucks. Hang in there. Get those last rads out of the way, and try to remember to breathe. Pamper yourself as much as you can! Come back by here, and let us know how you're doing.
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Bosum, thanks for the examples. It's hard in the heat of the moment to take that step back and refocus. Trying to do that more. I find that getting out into nature, even if it's just my back yard, is restorative. I don't necessarily do anything. I just look at the green and listen to the sounds. And try to turn off my brain.
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Good to see how well you are doing BB - I am avoiding this whole site and have been for a few weeks as it is not helping me at the moment - have not submitted my complaint yet as no point in summer but still working on that, need to do it for máximum chances althoigh I am devastated to say that I checked my place on waiting list and it has so many waiting the time span is longer - 2020 is the earliest they say for me.................finding it hard to see let alone read all about other people´s reconstruction etc when I so long to feel whole and symmetrical again
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Lily: I am so sorry to hear about the delay - 2020 is completely unreasonable! Is there any way for the PS to refer you to a US PS due to the delay? Are you in Canada or UK?
I am still struggling to get to Stage 2 - I met with new PS last week. I still have a huge abdominal bulge and it is probably the mesh. The PS may be able to remove mesh and replace it with pigskin which is more flexible? I need to lose 10 lbs and strengthen my core muscles. There is no extra skin on belly since abdomen is so stretched. I see PS again in late October. I have been in pain since 2014.
I have been depressed due to this mess. There is no guarantee any of this will work!
Also with referral will current PS fight for insurance coverage
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Girl53, I heartily agree with BosumBlues and 2Tabbies. Just my two cents but I think the majority of people diagnosed and/or going through BC treatment are suffering from PTSD. My therapist, who is high on the hierarchy of PTSD specialists, told me this and I worked with her on PTSD issues with good results. What you are feeling seems absolutely normal (and yucky) for this stage of your BC.
2Tabbies and others, thank you for your support on my recent string of non-cancer related maladies. I see the oral surgeon tomorrow for a consult since sinus seems not to be the problem but a couple of abscessed teeth! My ENT here rocks. I am scheduled for outpatient kidney stone surgery on September 15.
I need to get back to the positive things I was doing after recovering from chemo and surgery--exercise every day and eat healthy to get to a good BMI.
The main psychosocial matter I am dealing with is having retired and moved from my home geographic area to a totally different one and losing a lot of grounding support from people and places there. It was my first non-local move since birth and I am 65! I am trying to do some things positive about this but time takes time. Since I am an introvert by nature, time will probably take more time.
Hugs,
Peggy
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All: I am back....arggh! Just read through some of thread, above, and it is so comforting. I am just a mess! I am anxious and afraid, my tummy is upset...and I had some atrial fibrillation two weeks ago and now need to be checked out by a cardiologist. (This after having a "mildly atypical" mole removed from my leg during BC treatment, and then cataract surgery in January). Yikes! I am only 54, and otherwise healthy....feel like I woke up one day and all of sudden was told I had one life-threatening illness (BC) and now that the chest radiation I had for it may have caused cellular damage to my heart. Just feeling uncertain, sad, and scared.
Tell me what you think: the mental/emotional/spiritual route I think best is to acknowledge the difficult, painful feelings as normal, and hope that they will lighten in coming months. Meantime, keep doing healthy, positive things. Cry and laugh. Be grateful for life. Show up and participate rather than hiding, or staying angry and resistant.
Sound good? Thanks, all, for the understanding ear. It is so wonderful not to be in this boat alone!
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Girl53 -
Being grateful for life is good in theory - but it's really hard to practice gratitude when your stressed and scared. Of course we're happy to be alive, but that's not enough to balance out or imbalanced lives.
My advice is to accept the fact that life is spectacularly unfair. Nor is there any such thing as normal . And I find that the struggle to return to normal like swimming upstream with no place to rest. And trying to stay calm - forget it. Don't dodge the emotional bullets that come your way.
Like you said 'show up an participate'. Cry, laugh, and live in the discomfort. Do healthy, positive things, and go to yoga - but accept the fact that there are times when you'll want to punch someone in the face when they step on your mat. Don't try too hard to be sane. Sanity is overrated.
When I was going through my emotional upheaval my sister told me the story of the cow and the water buffalo. She said that when a cow approaches a pond, she walks tentatively around it, careful not to to get wet, uncomfortable or dirty. It takes a long time, but she stays safe. The water buffalo on the other hand plows through the pond and is soaked and muddy and reckless. It isn't as pretty, but she keeps charging forward and accepts the chaos and dirt.
And most of all - remind yourself that this is temporary. I'm the same age as you and have been through some dark times after treatment. And I've had days, weeks, months when I fell like I'm 100 years old. But thankfully, and for now, I am feeling good.
I wish the same for you,
Janet
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BB, yes that pulling yourself up thing gets a little tiring huh? Like you I have many other health problems and I am back on the medical merry go round and waiting now for an ultrasound on spleen pancreas and liver (I seem to have terrible pain in the left rib area). No words of wisdom here either.
Janet, great to 'hear' from you. great post and I wish I could be more 'buffalo'...
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First I must say..."My heart hurts for all you've been through"...But you must understand....you...physically and emotionally have gone through "h***"! Listen carefully....breathe deeply....you have been through the scariest time of your life. You will never be the person that you were a year ago. But you did it!!! Now, it's your time to stop, think, reflect, cry, actually realize what you and your entire body was put through
Realize and recognize that's its normal to have all these emotions now that you feel "somewhat" safe. But your body physically needs to recover. Your mind needs to rethink things about a millions times a day...what if..??? This is normal for anyone who has experienced something as traumatic as hearing the news...then the chaos begin....drs...appts....tests...procedures....When everything settles down...it just begins to be "real"...What you're experiencing is very very normal. Find time to do what you love....Just remember...you're not alone! Every single person that has responded to you...has been there and back...We understand anything and everything.! Feel the hugs and love that I'm sending!!!0 -
Janet, BB, Dacre, Wintersocks and all: I can't begin to thank you enough for these fabulous posts and for the love and hugs coming through! Sending big hugs back to each of you.
It is SO wonderful to know that others understand, having been through the same. I, too, don't want to think that misery loves company as we experience life's spectacular unfairness...LOL....just that it is so very wonderful to hear, and be heard by, others on this road who have been through the h*ll and back and are trying to regain some footing. After such a tough year, I just want things to feel "settled down" once again...want this tough place to be temporary.
Janet, so glad you are feeling good now. I laughed and cried when I read about the water buffalo. I am more of a cow type by nature....but I will plunge into that pond and get soaked. This journey is odd, isn't it? I had a massive meltdown this morning at kitchen table, then washed my hair and went to work, and it was good. So many different emotions in the space of a day. Some days, I wonder if I am losing my mind? (Don't they say that if you wonder this, it means you aren't?o:))
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I'm scheduled (almost wrote "doomed"!) for kidney stone surgery with a doctor I trust (I got rid of the first one I went to--my intuition said that his bedside manner didn't bode well--had to wait 6 weeks for an appt with someone reportedly very good. When. I saw this 2nd urologist I told him briefly why I didn't' follow up with first urologist. He said "He used to be in our practice. There are reasons he no longer is" ). That's one of the things that being treated for BC taught me--to listen with my head and my heart and advocate for myself). But I digress.
For the past two weeks I've been getting an average of 4-5 hours of sleep. I think it's PTSD form the double mastectomy with immediate reconstruction. Even though my conscious mind knows this procedure is minor compared to the surgery almost 3 years ago, I think a more primitive part of my brain says "run away". I once read an article "The Body Keeps the Score" by a very famous PTSD psychiatrist whose name I can't remember because I'm so sleep deprived.
I've been trying to cut back under the guidance of a psychiatrist the myriad of drugs I was prescribed for abuse related PTSD. I'm not going to keep reducing during this period but neither do I want to add anything (already take melatonin.).
I read books on keeping healthy and they all tell you to f---ing reduce stress as if you aren't already trying to do this. Some things are helpful--cutting back on projects that can wait, staying around positive people like you all, eating healthy, etc. but I'm still up at 4 am of the dot. Just needed to vent. Thanks for listening.
Hugs,
Peggy
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So many of you have posted so much wisdom here. When people have commented that I was brave going through treatment, I said that all I did was show up. And we need to keep showing up, as several of you said, even knowing there will still be some crappy days. I think I'm going to practice being more of a water buffalo than a cow!
Peggy, so sorry you kidney stone and the PTSD. The other health issues don't stop just because we've had to deal with the big BC, do they. Talk about not fair. Thank heaven you followed your gut and ditched that first urologist. I know that urge to run away you mentioned. That's the way I felt before my hysterectomy back in 2002. We didn't yet know I had cancer, and I just wanted to flee rather than let a surgeon near me with a scalpel. The thinking part of your brain knows better though. Keep telling yourself you now have a good doc that you trust. When is the surgery?
To all of you, wherever you find yourself emotionally, remember you aren't alone. I hope each of you starts having more good days than bad days.
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Girl53 - I'm still a water buffalo wannabe. I try every day to be more of a buffalo, but I'm a cow by nature.
Everything about post treatment was fighting my own nature. And I think that's part of the problem. Learning to live outside our comfort zone, learning to accept help, learning to embrace meltdowns as part of the process. Nothing comes easily.
For myself it was really hard to embrace the whole idea of falling apart. And it's only recently that I can look back on it to see how necessary it was to have these meltdowns. Without them, I don't think it's possible to rebuild. And I also had to learn to not hang on so tightly to all the behaviours that I strived to achieve. I've never liked to lose my composure or show too much vulnerability, but that all got kicked to the wayside. I clung to it for dear life though - but eventually it was just so much easier to sob. And I look back on it now and wonder - 'what was is I was trying to hang on to?'. I didn't even know what the f*ck I was anymore, so it's weird that I was trying to hang on so hard to the person that I thought I was supposed to be. Maybe 'weird' is the wrong word.Better words are 'confusing', and 'painful'.
Anyway - I laughed when you said that you had a meltdown, and then washed your hair and went to work. It's all too familiar - but I really think it's healthy. Another massive meltdown to start your day might just be another itsy busy baby step toward moving ahead. Well done, sister!
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I am laughing once again reading your reply, Janet, and feeling very supported and warm. I can't thank you enough. With some of the downsides of technology, social media, etc., there are many benefits: being in touch here is a big one.
Months after the end of treatment, I often feel embarrassed or guilty, as if gratitude and relief are the only acceptable emotions (and I do have these). It's hard to communicate that the determination to get through the treatments, and the relief when they are over, is not the end of experiencing or handling the whole "banana." The "you" that lands on the other side of the treatments isn't the you that went in. The sadness. Uncertainty. Anxiety. The lost sense of invincibility that you never knew you had.
Everything you said is resonating....what am I trying to hang on to? What was so great about the self-sufficient, contained, controlled me anyway? I actually like this softer, more flexible person better. It's just hard going through rolls of paper towels sobbing at the kitchen table LOL (Kleenex doesn't do the job)! And through this ordeal, I've learned that my marriage (a second one, after losing my first husband to a brain tumor) is a real partnership, and not the fairy tale I imagined to try to erase my past hurts. I'll take the real thing!!
Hugs right back to you, beautiful sister.
2Tabbies: Thank you so much for wishing us more good days than bad. I think I'll get there. While I don't have a kitty, my adorable 2-year-old standard poodle is is my best furry friend.
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Winter how are you? Was your operated side your left?
I am just about hanging in there body deformity wise, but my back is really troublesome at moment and more directly affecting my life.
I do think of you ladies often but cannot hang out here much as denial is a better friend to me right now.....
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Lily,
I know what you mean about denial. One of the ladies i went through chemo with from our UK group has been dx'd with secondaries that's the second one of about 25 or so of us. It was a shock. Who wants so much reality?
My mx was right side and I have been feeling pain on the left side of my ribs and under those ribs, so I got an u/s as the GP said I ought to. That was of my liver, spleen and kidneys and it all looked normal according to the tech. my GP thought it might be wind/gas but because of the history wanted to check it out. I am having terrible trouble with persistent UTI's every couple of months too. But apart from that I am on top of the world! (tee hee!)
Janet, I too had to change some things that I didn't know needed changing. Things left behind in order to try to build a better future.
Hope you are all is as well as an be.
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Janet and Girl53, I'm not much of a cryer. My go-to emotion is anger. So, my meltdowns involve more yelling. One of losses I feel most acutely is the loss of any sense of control over my health. For decades, I've done all the stuff the experts tell us will keep us healthy. And I've had cancer 3 times. I just laugh when I get some advice about doing this or that for some aspect of health. Also, whenever I hear anyone boasting about how healthy they are, never been in the hospital, not on any prescription, meds, etc., I just want to say, and you think that's under your control, do you? Just be grateful and hope it continues.
Lily, good to hear from you. Use denial if that's what it takes to get through the day.
Wintersocks, I hope you can get the pain and UTIs sorted out. Could the pain be a UTI getting up into your kidneys?
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I agree with several ladies here. I was and sometimes continue to be the same way. When you are in the fight you are focused and you have people and meds that help you. When you're done all of a sudden your supposed to be ok no one is watching anymore, no routine tests no chemo or rads it's just you. That's when you feel alone and thoughts begin to run away in your head. What helped me was keeping in touch with support groups and remembering that I did everything I could do and my results were good and the prognosis was good. It's hard even after 7 years I still get crazy but one day at a time and soon enough you will begin to trust in your survivorship.
xxxxxoooo
TinaIt's a nine mile skid on a ten mile ride..............Grateful Dead Treatment: Bi-lat mast, 4 rounds cytoxin/Taxotare. 40 Rounds rads which destroyed my thyroid (it's always something) , recon with implants, ooph, now on Arimedex.Dx 1/21/2009, IDC, 2cm, Stage II, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Jet59-
Thank you for your inspiring words of support!
The Mods
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Wow, I haven't been on these boards in quite a long time. I had a weak internet connection until recently. I am nearly three years out from dx and still having issues with my emotional health. I had an anxiety/depression disorder before it all, and now that has gotten worse. I did actually seek help from my doctors, and with meds things got better for awhile, and then last year soon after my best friend was diagnosed with stage 4 kidney cancer, my anxiety went off the charts and I ended up at the ER literally paralyzed with fear..and diagnosed with agoraphobia. (I had tried to attend church by myself when the panic attack happened. Thank God I made it home via a back road before collapsing over the steering wheel in my front yard!)
At the time of the attack, I was on a high dose of Venlafaxin which my doctor was trying to wean me off. My system is so sensitive to those medications, I am currently on the fourth one. It did work for awhile, though I am agoraphobic still. I always have been to some degree.
I am glad that I have been able to occasionally do things for my friend, such as make us a basket lunch at the lake, and drive us to Bible study once a week, since driving is difficult for her..but it is very hard for me to do this, and takes a lot out of me afterwards. (I pretty much crash for the rest of the day)!
I am also very introverted and that is just the way I was wired, but I was told by my BC nurse that sharing on these boards here might be helpful..and I will try to get to know you gals, and hopefully cut through the brainfog enough to remember your names and such...please be patient with me.
So, back on topic..I find it way harder to cope after treatment.
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I haven't been on these boards lately but I just had a lot of oral surgery followed by kidney stone surgery that had me almost hospitalized because the day after the surgery I had a fever of 103 and my usual temp is 97.6. I was delirious and my husband and doc gave me choice of Hosp or a daily series of outpatient shots (antibiotic) one in each cheek of my behind. It took 3 days of these shots to get me out of the danger zone. I was in a lot of pain for 10 days. I'm still getting my strength back.
I say all this because I realize that reading other's posts helps me to feel grateful that we are in this together. When I finished active treatment I was so aware of BC it was the first thing I thought about at every morning's awakening. I posted and read these boards religiously. I exercised, ate healthy, lost weight,etc. but after two years I began reversing these good habits because of a long-term stressful situation and because I started to automatically not think of BC.
So, I had a difficult kidney stone surgery. That's so minor compared with the original BC dx and if I had a recurrence...it was a minor wake up call...back to eating healthy and exercising. They may or may not help prevent a recurrence, but at least I would know I had done what I could.
Hugs,
Pegg
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Pegg
You have been through such a lot. I hope you are feeling better now. Well done on restarting the healthy eating and exercise routine.
I am working my way through a huge bag of jelly babies and feeling bad about it, but they are sooooo nice!
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Peggy, kidney infections and problems can make you feel really rough...........I too have started a weight loss regime as still technically overweight, although not hugely so, and I long for some alcohol, its not easy when you are feeling rough to do this.......well done you x
Winter - if you really want to stop eating jelly babies google where gelatine comes from.........!!
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NeverForsaken, it's hard. It's really hard. Hang in there as best you can. I'm glad you're able to do some nice things with your friend. I find helping others to be healing. There are times when we just can't though. Take care of yourself and check back in with us.
Winter, Peggy, Lily, good to hear from you all. I haven't been here much lately. I'm glad you're all hanging in there. Healthy habits are a good thing although I don't always stick with them either. I need to ramp up my exercise. I haven't been able to get up early and go swimming since my last surgery. I'm just too tired even though it's been 9 months. So I make do with yoga and walking.
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Peggy, this makes total sense! As I wander around the house post treatments with no signs of malignancy left in my pathology, I wonder why I get waves of despair when I should be thrilled it's all over. Talk about trauma and stress - We went through the wringer! I found myself getting sad this week now that rads are done because I miss my team and having something to do everyday. Thanks for the perspective adjustment. Makes it easier to cope with a little more understanding.
I think one of the reasons I love BCO so much and connecting with you all is because you truly understand. I get mad at my best friend when I try to explain to her that I feel like the chemo has aged me and she responds with "don't worry, you'll be back to your old self by next year." It's hard for anyone who hasn't been through this to know what a toll it actually takes. Maybe I will regain my strength, but it won't be without the physical and emotional scars as reminders. And that's not necessarily a bad thing. I've also let go of a lot of my old "invincible" beliefs. I ate right, exercised, looked 10 years younger than I was... and now I feel like I finally made up for lost time. I have health issues for the first time in my 59 years beside the BC but I'm also discovering a softening and kindness I didn't know was there. It's actually liberating and beautifully sad at the same time. So I appreciate all of your understanding and experiences so much.
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