Great saying about depression
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justagirl I wonder if there is some testing your hubby could have to determine if he needs any meds for dementia? There are some out there that are suppose to help. It must be both scary and frustrating to see these changes. I have seen them in my parents who are in their 80's. And I too am so grateful for this group. While people try to understand they just can't. I went to a group meeting and a nurse who is going to lead a breast cancer group in another town was there observing. Nice young lady. Clinically smart but you could just tell she didn't have a clue as far as the emotional aspect of a mastectomy and breast cancer. That is why it is so very important we have each other here to support and care for one another.
I think as we start each day we almost have to have a mantra about it. I have to start with thanksgiving and focus on living with hope and determination. Sometimes I succeed and sometimes I don't. On the days I don't I try to allow the emotions and then step out again with a new spirit. But there are just those days that it takes you to a dark place. I think that is normal.
Peace to all today
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Debbie- If it helps I can empathize with what you are going through. My DH is only 50 but since the Parkinson's dx I feel as though he has aged 20+ years. He's on permanent disability so is essentially "retired" and will also go weeks without shaving. He always had to keep his hair short in the military and then the airlines so has now grown it longer (which I don't like and don't think it looks flattering on him). He will isolate himself in his workshop most of the day so at times I feel as though I'm widowed and other times I feel as though I have one more child to take care of. I have to remind him to eat and to come in to sleep. Like your DH he is completely clueless as to why I'm unhappy but will oblige whenever I ask him to do something and is very sweet to me. It has completely changed the dynamics of our relationship, though.
A while back he also questioned the benefit of being on BCO after so long. I think he was just tired of hearing about BC as I would share things from the site. He thought I should step away but I told him a lot of times it was the women on here keeping me sane. That they were the only ones that got it and were still willing to listen when I needed to talk about it. The eyes of my "real" friends would start to glaze over when the subject would come up like, "OMG, I can't believe she's still talking about this". And I find if I can help make it easier for someone else than it's also a good thing. The other day a woman wrote me and said if it weren't for me she wouldn't have known about nipple sparing because her BS never told her. She ended up switching doctors in time and was able to have NS and had written to thank me. Needeless to say, that made my day.
I think as women we are all starved for female relationships that go to a deeper level yet those are hard to find in life. Everything feels so superficial. It's, yet, another thing that draws me here. Having conversations that are deeper, more meaningful, even if it's sharing about SFBC.
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thanks hopefulhealing and Kate,
my husband has (on the sly as we don't want to upset him) been checked for dementia and he doesn't have it. It's just the progress of age.
Kate - I have a heart full of empathy and understanding for the position you are in. It does make us too similar in our wifey positions. I guess I still carry the weight and worry of BC, then dealing with my son who was emotionally torn apart by my diagnosis two years ago and I guess most of the time I just feel like I don't have enough energy to cope any more but know both my husband and son depend on me - like they always have. I've had my son on antidepressants for about 6 months now and it has really helped him. Setting up two specific days a week for my husband to shave has helped me and he likes to please me. Guess that's why he doesn't complain or comment when his leftover day clothes disappear from the chair where he leaves them at night. But like you said Kate, it makes me feel more like his carer than his wife of 29 years. I have always been the strong one and leader in our family and someone has to and it was all fine with me until BC hit. Then I wanted someone to put their arms around me and take it all away and it was my 16 year old son who stood by my side. Most of the time my husband just didn't want to know as it upset him and if he got upset then I had to deal with that. My dear girlfriend in Kauai was calling almost daily and at the time of my diagnosis was bound and determined to leave her life and job on Kauai and come here to Australia to be with me - us. But I said no - that talking to her was what I needed and she always listened - sometimes for over an hour at a time.
But NO ONE replace YOU ALL and especially those who have specially reached out to me here.
hopefulhealing - I have read and do listen to what you suggest to have a better positive day and will keep on trying. I think yesterday was especially a low day for me as my son, after a lovely week at home, left to go back to university. Last night our dog, Jaki, after dinner, instead of being at my side while watching tv, went up to our son's room and just laid on his bed, waiting for him to come home. Hmmm, Jaki knows just how I feel..........
today is a new day and I have a choice to ignore my aches and sadness and get on and out and enjoy the day even if it is raining buckets or be in a funk. I'll try for enjoyment - as every day is a gift after receiving the diagnosis of BC.
and Kate, yes I do feel like a widow, much of the time, as I manage everything in and out of our home and on our 8 acres. My husband leaves at 6am to see his friends up at the pool centre and doesn't come home until about 1pm, then plants himself in front of the tv, where he stays until after dinner (which he wants at 5pm!) and he goes off to bed at 6:30, so it's just me and my girl (dog - Jaki). But I have to remember I could not have him at all and that thought just makes me cry - bye for now.
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Aww Debbie I am so sorry you have so much on you and feel so lonely. I cant imagine having all the responsibility of such a big property, your kids, your hubby and trying to heal yourself. {{{{HUGS}}}}
Can you keep him up later in the evening so he doesnt get up and out at the crack of dawn?? Can you unplug the TV and tell him cable is out?? I am sure you've exhausted all efforts..I know with my Dad he is so in a routine I dont think anyone could break it. He spends a lot of time in front of the tv too I think cause he cant physically do the things he used to love to do he just sort of gives up. hmmmm that sounds familiar.
I know its hard with the time zone but I feel like one of us is always up...and here for you. Maybe we need a group trip to Austrailia
Diane
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Thanks for the hug Diane - I can actually feel it over the miles! As for keeping my husband up later, as you said about your father, my husband is set in his ways and he gets cranky if you try and change him too much. We have always been a bit on different time tables, as he goes to bed early, like 6:30 and I go at 11pm and I can get up at 6am but would rather it be 7 or 8am. Having worked years as an ICU nurse, I got used to working and sleeping crazy hours, so am not a good sleeper even at the best of times. Once I'm up I can go for hours and hours - used to do 24 hours shifts every weekend without a problem and then be ok after 8 hours of sleep. And yes, my hubby (Jerry) can't do much anymore as he has back and knee issues, so he can't help me much with the gardening or even carrying in firewood in the winter.
Right now it's 9;40 pm here and your are probably still asleep. I already feel better'talkin' with you all again and it makes me not feel so alone or stupid for being still so afraid of BC. My son came home from getting his flu shot and I had him show the Dr a little red spot on his back that just hasn't healed and they are going to biopsy it Wednesday. Of course, it's probably nothing or a BCC but inside something clutches at my heart and I think 'please keep my baby safe' even though my baby is 18 and 6' 3"! Just another thing for me to try and not worry about.
I would love for all of you to come visit and stay here with us in Australia, but I know it is a long expensive flight. Maybe we all could meet somewhere like half-way, say Kauai, where I used to live? I could rent us a house for a week or two and we could tour, walk the beaches by day and have long pajama parties at night? Just a thought....
Goodnight and I will sleep better tonight knowing I have you as friends.
And hopefulhealing I did what you suggested and told myself to be thanful for today - to be positive, to look forward and go!
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Debbie- I have the opposite problem with my DH in that I can't get him to come to bed. We have a large garage and he's turned part of it into a workshop and will be out there until 3:00 a.m. and then be up at 7:00 a.m. only to go back out there. I told him that he's not giving his body the rest it needs especially with PD. It's been very lonely and different. I don't know how you manage with 8 acres! We have 2 and I'm barely getting by and now it's even more difficult with the LE. I think you're amazing for doing all that you do. I think you need that vacation in Kauai! That would be so much fun!
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I have been so busy so haven't really caught up with everything that is going on with everyone. But Hopeful I can't imagine waiting 2 weeks! I hope you have head something by now and of course hope you have good news.
I think if Mary was staged further/higher then maybe someone might have caught the mets - do you think? But no matter, it shouldn't have happened at all and certainly not like that.
My little puppy's surgery went fine but he hates that awful cone. It dawned on me that he doesn't even know he will be getting it off soon. So breaks my heart for him to think it is permanent.
I finally got the necessary paperwork and went to a spine surgeon who took X-rays from my car accident. Nothing broken or twisted or such but even the nurse was surprised how one leg is now about an inch or more shorter. So I now have a prescription for PT. Haven't ever been but have taken my son many times.
My problem is my brain - I just can't seem to remember anything... oh wait. once again I forgot it is cause I haven't been sleeping as my legs and back hurt too much when I lie down so have new pain pills and will get somekind of topical ointment that is supposed to help. I got in my car after seeing the Dr. and I couldn't remember how to start my car. Till I get some sleep I really shouldn't be driving. Then all the issues with having teenagers..... so sorry not being able to catch up right now. Just not able to keep a train of thought. But I'm sorry I can tell a lot of you are really having a rough time right now....
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OMG this is so familiar==I know when I come visiting sometimes I ramble and don;t mean to but coming here is my safe rambling place. Some of my paperwork for INSURANCE has gotten mixed around and someone? called me and they want me to straigten it out, hahahaha I can't strainten out my silverware drawer-so I have noe idea what they expect me to do. I can't comprehend things like I used to, I'm finally getting used to it I was getting to a real point, but it's gone.. Sorry LOL LOL I should delete this, but this is me so that's it.
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That is such a good quote and fits my life right now perfectly
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Hope- Well I feel like a lousy friend. I forgot to ask you what the onco said. (Sorry- been in a LE-induced fog). SORRY! I hope everything is o.k. I know how scary it is waiting for those d*** calls that seem to take forever to come.
Stanzie- I have the same issues. I don't know it it's BC or menopause related but I've turned into a total airhead. Glad Alfie's surgery went o.k. Hope he gets his cone off soon- poor baby! Maybe you can distract him with snausages. They're like doggie junk food!
camillegal- OMG you made me laugh with the silverware drawer comment! I'm glad you didn't delete!
luvhummingbirds- Just wanted to say welcome! Hope you'll feel free to share your feelings with us. It's really hard to always be strong through all this and we're always here to listen.
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Camille you made me LOL ...I posted one time post op and loaded on pain killers and the next day I was like ...uh what am I saying..delete.
I think sometimes we just have too much going on at once and cant think straight. People need to give us a break...somedays when I cant remember stuff I think I wish the universe could stop for just a day and everyone would leave me alone to just be.
Ok my dog is snoring in bed next to me. This is what i've been avoiding my whole life...a male hogging the bed and keeping me up with his snoring. UGH.
Hope everyone is having a good weekend. I am so excited to have tomorrow all to myself. I plan on doing yard work and grocery shopping and laundry...I have lots and lots of neglected laundry.
Good night all!! Love you ladies...oh Stanzie...I have to say I am so glad I got Charlie AFTER his snip surgery cause I could not have handled the guilt. Your sweet baby will not even remember the trauma of the CONE in another week. Sweet little Alfie!
Diane
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Diane- "a male hogging the bed and keeping me up with his snoring. UGH." LOL! Yep, I've got one of those! Thank God for ear plugs!0
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Bed Hogging and Snoring:
Ok, I not only have a husband who snores (and yes, I use earplugs) but a 55 pound collie who thinks her rightful place is smack dab in the bed between us.
Kate, you are right about your DH needing his sleep to regenerate his body when dealing with Parkinsons. Also, which I guess is another battle for you, is him eating enough protein to keep his body going. Wow, you have a hubby who won't go to bed and I have one that can't wait to get there! Guess what I miss most about my son being away at university is we used to sit around at night and talk, as he was like me and liked to stay up later.
another day, another try.............
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Debbie I am too lazy to look it up...what is the time difference between Austrailia and the East Coast USA. Its 8.30 here on the east coast...what time is it there??
I am always up for a chat..just PM me if you want someone to talk to..if its before Midnight ...I am usually up...usually alone...always in the mood to chat.
Diane
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Debbie- He's not eating enough of anything really. He's skin and bones (which, of course, just makes me feel that much fatter- lol!) I feel like his mother lecturing him so much. When I was first pregnant I was extremely underweight. I would actually wake up in the middle of the night and was so hungry. It was my body's way of telling me I wasn't consuming enough calories. Well, that's exactly what is happening with him. I find him foraging in the pantry in the middle of the night because the hunger pangs have actually woken him up. But when I get on his case about eating more during the day he just says he's not hungry. I keep threatening to make him drink Ensures. I am definitely going with him for the next neurologist appointment.
What, your son actually talks to you? Lucky you! Mine is at the age where he mostly grunts and mumbles. Hope that changes when he gets older!
I was wondering the time difference down there, too. When it was 8:30 p.m. for Diane it is 5:30 p.m. here in Arizona.
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dear dear justagirl I believe we have to try to find the things to be thankful for but in no way minimize what we are dealing with. It isn't always easy and I fail miserably sometimes. It hit me this weekend that how do I reconcile the thing I always hear. "Once you have had cancer you appreciate every day" I was struggling with that because there are days I have been so sad and cried and cried and days I have been angry at all the uneccesarry complications and anxious etc. Then it struck me. It is like on the occassions you get a gift from someone you don't particulary like. You know what the say the bad sweater. You don't particularly like the gift but you love the giver and are aware of the kindness and goodness of the getsture. That is how I could finally have it make sense. I am thankful for the gift of each day now more than ever, but there are days I don't particularly like the gift. Does that make sense?
We maintain the honesty of the journey not by denying the difficulties and treaderous days and pain etc. We maintain the honesty as it is true and nothing is wrong with saying we are overwhelmed or sad or angry or in pain or scared.................. And with the honesty of the hardships is the fact that we are courageous beyond what we could have imagined and we will put one step forward and continue forward when it is time too.
This is a disease that is layered and complex and difficult. And we are women we are doing the best we can to navigate our way.
Peace everyone
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Hopeful - I so look forward to your posts - I know we all have terrible sad days but your post are always so uplifting even when I know you are hurting as well. Makes me want to give you a big hug!
I think going through the initial diagnosis and treatment our brain helps us out by putting us in this fog where he go through all the steps we have to take and helps us deal with getting the treatment we need but then afterwards is when it hits. Emotionally most of us have not had a chance to deal with everything and by the time it hits a lot of us are finished with the doctors on a regular basis so we are left with horrible fear and lack of understanding. Then we start really looking at the reconstructions and what works and what doesn't. Also any complications that continure or any infections or really serious stuff. But we have left that protective fog when we now know we are changed forever both physically and mentally and certainly emotionally. We are hurt and angry and depressed and alone. Except for the wonderful women on this site who can understand how this isn't a process that ends. It is a process that continues whether you still have treatments or not. We can all relate on some level.
As Kate said, hope your appointment went all right - we worry about you as well.
Camille - I have hired this sweet lady to come in once a week to walk my puppy so I can go help this wonderful elderly couple who are both in wheelchairs and I just can't bear to leave him alone for too long. Anyway, when she came over for the first time, I knew I should be cleaning up the house but then I thought well, if she will be coming on a regular basis my excuses won't work - I could say it was a busy weekend even though it is Wednesday so instead I just said " well, this is how my house usually looks " so hope it isn't too dreadful for you. She just laughs and said she understood. I just don't have the energy or the motivation all the time to keep it perfect. Ok, it is Never perfect but you know.... Glad you didn't delete!
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Hopeful I totally agree with you. My friends all say "If I beat cancer I would be partying it up living life to the fullest". OK well no you wouldnt...I try to tell them while yes I am grateful I have gotten through the worst of it and had caught it early BUT...I am tired all the time...I am self conscious about the way I look...I have NO money cause I am in debt with medical bills and have depleted my life savings by not being able to work through treatments and surgeries. AND guess what people....I dont want to party all the time.... I WANT to sit home with my puppy and kitty lots of time...I DONT WANT to wake up hungover. Yes I am going back to the gym, and trying to resume my "old" life but until I really figure out what I want...I want to sit home with my pets and try to save money so I can pay my bills and not worry so much. I want to talk things through with people who understand what I have been through. Geesh! I do get tired of people telling me how they would react..they have no idea
Robo...you are right about the exchange surgery. That was a time that my friends really let me down. Everyone thought it was a nothing surgery ...you know I was having a boob job..and I am all better so why did they need to be there for me. My closest group of friends...friends since we were 10...went on our annual beach trip while I was in surgery. NOT ONE of them called to see if I even made it through surgery. OH and the kicker...it was planned on my birthday weekend. and Stupid me thought they cancelled the trip when I was diagnosed but behind my back they were all planning on going. It was very hurtful and since then I dont speak to two of the ladies to this day. For me it was when the depression really set in and I felt alone. I am not saying you will feel that way..but you are right that most people think you are cured and done...so get back to life. No one will ever understand it until they go through it for themselves. I dont mean to sound like a downer I just think it hit us all at that exchange time. Also ROBO I read on another thread that you have started Tamoxifen. Give your body time to adjust to it. I was so bloated and had so much discomfort when I first started. I took Gasx daily to try to eliminate the bloat. Also my onc said it will take your body about 8 months to adjust. I have been on T a year and a half and I have zero SE's. It will get better its just one more thing you have to bulldoze through.
Ok yesterday I did yard work....today I can not move. I have to do my extension for my taxes then I am going to try to complete my yard work and play with my poor puppy that is looking at me with his sad eyes cause he wants to be outside. Talk with you ladies later!
Diane
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Hope- I always like reading your perspective and insight on things. It makes me see BC in a new light and even helps me better understand my own feelings. Amazing that someone I have never met can do that for me but you do! The day I reread this thread, looking for words from Mary, I found myself drawn to reading your posts as well. I can't help but feel there is a possible book in your words. There's an honesty there that I don't think is expressed much about BC. Thank you for always sharing those thoughts with us.
Stanzie- I think you summed up what is lacking in BC treatment. That we start processing when we're done with treatment and/or surgeries and that is when we are most alone. There's a total lack of support from our doctors at that point. Most say, "See you in a year!" I don't know about everyone else but it would have been difficult going to my BS a year later and talking about any of this because you feel like you're the only one who feels this way.
robo- That fear of being "done" is understandable. I think most thought when my MX was over that life returned to normal. Others when I had my last surgery. Yet, here I am still trying to deal with it all. I sometimes feel like I got run over by a Mac truck and am still lying in the road. Everyone around me is just walking by and thinking, "Well, glad that's over!" and meanwhile I'm flattened. Diane told me about a t.v. show where the woman is going through BC. She said the woman said to her DH, "Can someone please tell us where the finish line is?" Diane said how poignant that was and she's right. I think we're all struggling to find that finish line and no one realizes what a long race it is.
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Diane- I think we were posting at the same time! You're so right about the exchange surgery. That was definitely the time I felt let down the most. That was the surgery I had the most anxiety about because it was the one that was supposed to fix everything and make it all "normal". But other than my Mom and my sister no one even acknowledged I had surgery- not even a phone call. The funny thing was that was the one I had the most complications from. (Reaction to the anesthesia, stopped breathing....) Yet, it was as though I'd had a root canal or something.
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LOL Kate I think you were right...you know what they say...Great Minds think alike..
Ok so I completed my yard..had to run into the office for last minute tax return...
Then ran to the Home Depot for another 12 bags of Mulch...which I thought were about 20 lbs..OH no they are 56LBS!! No wonder I can not move today...I fear tomorrow may be worse. So I loaded and unloaded and move around and dumped 1,344 lbs of mulch!! Oh and it was 87 degrees today. I am beat ...sunburned and sore. This is when that bed hogging..snoring all night man would come in handy...mama needs a massage!!! LOL
Ok I have work to do and just keep staring at the pile. I am so over taxes right now but I have a big nonprofit to do. uggggghhhhh..Oh and I still have my extension to do which basically consist of me looking at how much of my savings I want to part with now...and how much later when I actually file my return. its an easy calculation at least.
Ok serious note...I am meeting with the new medical oncologist tomorrow and praying I like him. Since my brain is currently experiencing data overload...does anyone have any suggestions of things I should ask him. My one friend suggested I ask him about his teaching schedule since he teaches at Hopkins School of Medicine as well as practice. I of course also need to know how I can reach him...DAY and NIGHT.
I also want to ask him about tumor markers since my other onc doesnt believe in tracking them...oh and scans since I have never had one. Anything I am missing??Any suggestions is much appreciated
Diane
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Diane- I can't help you with the onc since DCIS isn't quite as intense a follow up as you need. Just hope you like him and feel comfortable with him.
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Kate and Diane,
There is a huge time difference between me and you - actually I am a day ahead of you but to make life simpler (and who doesn't) just think that Kate you are 7 hours ahead of me and Diane, you are 10 hours ahead of me.
hopefulhealing: your words make so much sense to me and believe, me I'm soaking it up like a sponge. I need more ways to at least start my days on a positive note and to have another way to view how I feel and think other than I'm neurotic.
Diane, I bought a $15 trolly for hauling heavy bags, which works like a charm. I am in awe of how much mulch you have been lifting and putting down. You deserve a treat, a glass of wine, a good book, a movie!
As to having a man about to help you - well I have the man about but unfortunately with his back he can't even lift or do anywhere near as much as I can/do. I sometimes think my dog Jaki give me more support, even though it's only moral. For you, your cat should be happy with soft places to do 'business' and hopefully Charlie won't be digging holes in all your work.
Two things you might as your new oncologist besides how to reach him day and night: an ultrasound around the edges of your implant/s, including the axillary area/s. An MRI of the chest to look under the implant/s. Also, if you are on anti-hormone therapy as I see you are E/P+ like me, discuss any side effects you are having. Lastly, find out, as he is unavailable at times due to teaching, who do you contact if you need to?
Let us know how your visit goes and give your body a rest now after all your hard work.
Diane, thank you for the offer to pm you at night - beware I just might take you up on it.
Kate: your son will get past the grunting response stage but be prepared - it may last another couple of years! Yes, my dear 18 yo son Max does talk to me, and when he was home last week from university, we had some wonderful conversations. In fact, since he moved out the end of February to attend a different university, our relationship has returned to what it was before the grunting phase started, which for us was about 2 years ago.
Sadly, it really made me realize who my 'true' friends were when I was diagnosed. Of about the 10 or 12 women I socialized with, only 3 remain. I just have dropped any semblance of wanting to maintain a social/personal relationship with the others. Sadly, 1 of the 3 lives on Kauai but we burn up the phone lines. And actually, I'm ok with it. And the best thing of having BC is all of you for 'true' friends!
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Debbie....anytime ...I promise. Thanks for the tips..I will let you all know how it goes tomorrow.
Charlie did indeed dig a hole to bury his first bone in my garden..it was so cute I couldnt get mad. Little does he know it is most likely gone by now with all the critters in my yard.
Good night dear friends!!
Diane
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I haven't seen any postings for a while here from Claire and 3jaysmom. Does anyone have contact with them?
I know 3jaysmom's health is really giving her problems now (seems more than usual) and I worry about Claire with the after-effects of leaving her job and the suicide of the young boy she knew.
thank you.....
Claire and 3jaysmom: even if you don't feel like writing - just say 'hi'.
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could someone here tell me how to post a picture here? I look at the icons below where it says post your reply and don't see a catagory for attachments. thank you.
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Morning all!
Debbie you have to have a pic on like facebook or shutterfly..so on FB you open the picture up right click on it ...copy...then paste it here in the dialogue book.
Getting ready for onc meeting...be back later
Di
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Morning all!
Debbie you have to have a pic on like facebook or shutterfly..so on FB you open the picture up right click on it ...copy...then paste it here in the dialogue book.
Getting ready for onc meeting...be back later
Di
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I had my appointment for my shoulder pain, that I've had for 6 weeks, and doctor thinks it's arthritis. I always thought that was an old person's disease- guess that means I'm old! lol! Anyway, she's ordering an x-ray to be sure and wrote a script for PT. Geez, how many parts of a body can one person go to PT for? Wish they had a full body plan! I had my 2nd session with the LE therapist and she was very encouraging. She thinks she'll be able to get my swelling down and eventually I'll only need to wear compression sleeves when I'm really using my arm a lot (like gardening) and for flying so- YIPPEE!!!! It's still hurting a lot but I see her again tomorrow. I may increase it from 2x week to 3 if it speeds things up.
Diane- Good luck with the Onco! Hope you like him! Maybe he'll even be cute!
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Debbie- I use Photobucket to post photos. Every time I try to do it, though, I have to teach myself all over again. 3jays is the one who taught me the first time. Speaking of, like you said-
3JAYS AND CLAIRE- WHERE ARE YOU?!?!?! You don't write. You don't call. Hope everything is o.k. and you're just having too much fun out in the fabulous world!
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