Why was I stronger DURING treatment than I am now?
Comments
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Timbuktu, I hope you have some answers and relief from your physical problems soon. I find that after what we have been through any physical problems I have are met with an entirely new level of anxiety.
cfdr - how wonderful you had all the energy and enthusiasm to put on a big party and even had more energy than your husband. It gives me more hope than you know.
Ginger48 - thank you, thank you for saying that two and 1/2 years out you feel stronger and reconnected.
I find this thread so helpful. Both when folks share about the struggles of post treatment life and the eventual strength and connection you begin to experience. These are both so helpful to me during this time.
Janet, one of my five dogs was also diagnosed with a tumor on his neck and had it removed two weeks after I had my mastectomies. He is a basset/beagle mix of some kind. My dogs were and still are such a huge help to me - they never mind curling up with me all day on the bed when I have no energy and are happy to enjoy when I have the strength and energy to take them hiking. What a blessing these animals, cats and dogs are in our lives.
Thanks everyone -0 -
I would like to thank everyone who commented on this thread. This is just what I needed. Im 4 months out of treatment and am on the Tamoxifen. I too am in the same boat as you are. It seems like I had more confidence while in treatment than I do now. I am an emotional wreck. It's so reassuring to know this is normal. I like the post that said everyone sees the hair growing back and the treatments are over so the battle is over. That's far from the truth. The support that we had during treatment is still needed now. My friends can't seem to understand that because they think I need to stop dwelling on what I went through and focus on the fact that I beat it. It's really heartbreaking to not have anybody in my circle to "get it". People don't mean any harm but like I told them they can't understand because they haven't walked this journey. Now I have people who can relate to what I'm going through. Thank you thank you thank you!!!!0 -
Today has been an ok day. I went to my son's hockey game and then onto the grocery store where the anxiety really hit me. Too many people around me. I just decided that I would crawl into bed when I got home and that is what I did. I took my anti-anxiety meds and crashed out with my cat. I did get up and make dinner and then crashed while it cooked. Not a lot got done that I wanted to do - but that's OK. My husband came up and asked if I was sick or just tired. I said tired but honestly I had quite the crying jag right after I came home from the store. The one thing that stood out about today is that I decided to hang out on my own upstairs and crash and it really didn't hurt anyone else. My girls came up a couple of times to ask for things but no one starved or fell into a well!
One thing that hit me really hard when I was at the store was the idea that maybe how I feel is the cancer returning. I know that that is a normal response but it really threw me for a loop. My husband would discount this idea right away (I've been given a clean bill of health and all looks good right now) but when you feel so out of it and bone tired after something so huge such as cancer - EVERYTHING starts to feel like cancer. It's one of the things I hate the most. Before this, I would have just assumed I was tired or getting a cold or something. Now I immediately think IT'S BACK!
I really worry about my kids a lot. What mother doesn't? Mine are so young and need me so much sometimes. I know they don't think anything of me being crashed out in bed today but I think if I was feeling better - we would be decorating for Christmas etc. I hate the idea that I am missing things with them now because God Forbid it comes back and one day I'm not here to share things with them. It's like I'm anxious about making up future lost time now. Crazy, eh?
Too many people think that it is over now and we are "dwelling" on it. Well a lot of the time, it's far from my mind. I'm too busy with life. But when you are so tired that you can't do something as small as bake a cake from a box (I bought a cake for dessert because baking one seemed like a huge undertaking!) - you realise that you are still going through this and will be for a while.
Missilisa88- you are so right when you say unless you have walked this path - you don't understand.
Now I'm off to have a piece of that cake and enjoy every forkful. Little things, small steps.
Robin0 -
Robin, I feel compelled to reach out to you because you are reaching out to women who can understand where you are and bring comfort to you. Since I have been where you are now minus three young children to care for, I feel I have something to offer you. Twelve years ago I had DCIS, stage 0 and had a lumpectomy followed by radiation. Towards the end of my radiation sessions, I experienced serious depression and was fortunate enough to find the right therapist who put me on a combination of Wellbutrin and Lexapro combined which I took for a period of seven years. My therapist told me that depression left untreated could in later years lead to dementia. She saved my life through my sessions with her and the medications. Like you, I just cried out of the blue and could not keep myself together. My children were young adults at the time and I also worked full time in a family business. My husband at that time had also suffered a major stroke previously which no doubt added to my pain.
I can see that you are doing your very best to be the best mother that you can be to your children, but the depression is interfering seriously with your day to day life. Have you shared with your husband the extent of your depression? He really needs to know so that he can understand what is going on.
I can see that you have had a DMX and the same chemo that I did. Medically what you have been through is sheer hell and now you are suffering more hell because of the depression. Perhaps you could seek more help for the depression and perhaps you need a nanny some of the time so that you can help yourself to recover. You are young and you can be treated successfully and have your life restored to you.
You are in my prayers and will remain so daily. I am so glad that you are reaching out.0 -
Hi Honeybair
Thank you for your response. I am on Wellbutrin right now and I'm going to talk to my doctor about possibly changing it because of the anxiety I am feeling. My family doctor and I are really close. He's been with me through a lot (my twins were born 13 weeks prematurely and almost died which honestly ranks above cancer in terms of nightmares we've been through). I'm going to talk to him about finding someone he recommends to talk to as well.
I just woke up from a two hour nap after dinner. My husband had two of my kids in bed and my third was building lego. My husband and I just had a really good conversation about what is going on. We both agree I emerged from this last year physically better off than I was told that I would. However, the combination of cancer, treatment and raising three young kids is a huge whammy. One thing that happened last year was that my twins went to school for all day kindergarten for the first time (it was such a blessing it happened when it did - the timing was incredible I don't know what I would have done if they hadn't been in school all day) but this is really the first "normal" year that I am experiencing with the kids in school full time and I'm having quite the learning curve. Last year was such a weird year that it almost doesn't count in terms of knowing how our day-to-day lives would work with all three kids in school. Heck, I was just glad they were in good hands all day - the rest of it just sorted itself out. Now I'm learning it's not as easy as I thought. I have 6 1/2 hours each day to get stuff done around here for myself and for the household. It's not a lot of time. When school started I really thought "Hey, I can do it all" but now I realize that was a pipe dream. I can't do it all and I need to pace myself more. My husband told me to focus on the stuff I like to do and do that. The rest of it - we are lucky we can afford to pay someone to clean the house, etc. So my husband thinks I should rest more and do more things that I enjoy and to heck with the rest of it for a while. Tonight I napped and he did the kids, the dinner clean up and bedtime. I told him I was sorry and he point blank told me "No, I wanted you to sleep. You need to sleep."
So tomorrow is a new day. I'm going to get some more sleep tonight and try to accomplish three things tomorrow: go to my French class (my kids are in French Immersion so I'm taking French at the local university and love it), do a little bit of exercise and make dinner. Three things. Not a whole list of things like I want to do. Our cleaning lady is coming to start the process of actually putting the house back in order for me tomorrow. My husband and I talked about what we needed her to start with - which areas are priorities and which are not and we really like and trust her - so I'm handing that one over to her. She cleaned up our basement last week and when she was done it didn't look like we lived here! It's nice to come home to find something that turned into a total mess last year is now neat and tidy again.
I feel a lot better now that I talked to him because I admitted that psychologically I'm really scarred by last year. He told me he would be worried more if I wasn't scarred by last year. Now that he knows I'm crashing - it seems a lot easier. He'll keep an eye out on me more and I don't feel like I have to hide as much.
Thank you for your kindness and your prayers. I thank God everyday for this second chance I've been given and truly believe in the power of prayer.
Robin0 -
HH, your husband sounds like a gem. :-) Good advice...reduce your expectations for what to "accomplish" other than heal, heal, heal.0 -
Well I managed to accomplish my three things. Went to French, worked out for 30 minutes on the elliptical machine, and made dinner (which was met with mixed reviews by my three little foodie darlings - LOL).
I had only one little breakdown today and I phoned my husband at work and he talked me off the ledge.
I started reading a book about depression called UnStuck. It had some meditation exercises in it and so I tried one after I worked out. I felt so good after that exercise I had enough energy to actually go to the grocery store and load up on lunch goodies - a thing I find very exhausting because I have to do it so often.
More tomorrow.
Robin0 -
winter how are you? Want to join us on hermit thread? Think you would like it there.....xx0 -
Robin - Congratulations on your accomplishments! One little breakdown is fantastic progress - I hope you sleep like a baby tonight.
The thing I've really learned over the last few years is to enjoy your good days. There will be many more ahead - for certain - and you'll eventually get to a point where it's mostly good days. (Or as many as humanly possible). But don't get down on yourself if the breakdown free days don't come as fast as you'd like. Meltdowns are part of the process, and I think they're a really good part - because they help you accept, and absorb and rebuilt. And I'm so glad that you're husband is aware that you're crashing.
It sounds like you're doing great though - breakdowns (little), accomplishments (many), and all. Keep the progress reports coming!
Lilly - What is a hermit thread?0 -
It comes, it goes. If I get a sore throat or a sore shoulder or stomachache, I'm fine and then I think- wonder if it's a recurrence?0 -
So true lisa. It's really amazing how we used to take health for granted when it's really such a miracle, I don't know why this is underlined, I have had blood in my urine for over a week now. Dr. said to give it one more week on antibiotics and if that doesn't work we'll have to see if there's another cause, besides a UTI. We really do have to try to enjoy every day we have, At the moment i feel fine so I have to go with that,
My dil just gave birth to a baby boy after a long and difficult labor, Its been nerve wracking for all of us but here we are, and everything turned out fine. I guess this is life,,,0 -
Wow, being away from this thread for several days leaves e withALOT I want to respond to.
One reassurance I received that others might find helpful is this: I switched to a new onc last week because my former was clueless about the emotional impact of the disease both during and after treatment.
I told the new onc that I was feeling better physically as time goes by but that (like many have posted here) I get tired (I.e., can't do anything but watch dumb tv much earlier in the day--by Judge Judy at 4 PM I'm toast) so much earlier in the day. I also told her I have been on an no enjoyable emotional roller coaster since active treatment ended. She said that both the physical and mental symptoms were likely to last for AT LEAST a year after treatment ended. For me, including my last reconstruction, that means I will likely be dealing with this aftershock experience at least until next September.
This was both liberating because I had a doctor confirm that I'm "normal" and that she understood the emotional side of cancer, and disappointing because it boded the likelihood of having to process these hard feelings and tiredness for quite a while. She did say that the energy part would gradually get better each week that passes. Patience is not my strong suit!
I've been reading posts about cats and dogs taking care of them during treatment and I'm so envious. My shelter dog that I adopted when she was six months old has been with me for six years. She is the opposite of your pets. So glad to be around me when I'm feeling good and heading for the hills if I feel sad or down or tired. I hired a dog walker while I was in treatment and neither of us are ready to let him go even though money is so tight. She loves him.
All of what has been posted over the last few days has been very helpful to read. I hope to stay on this thread every day so I can respond more person to person like many of you have been able to do.
My big success this week has been starting to quilt again. In my aftermath depression I was unable to pick up this hobby again at all. And it's a hobby I'm passionate about! So that's some progress!
Last night my husband was with his supervisor riding to a client site. He told my DH that his wife had just been diagnosed with tnbc like me. They are devastated as she already has ALS. I could hardly take in the vastness take of their heartache. She is leaning toward not getting treatment for the bc since the ALS has so progressed to take away much of her quality of life. In her shoes I would do the same thing. Can't imagine getting chemo on top of an incapacitating ALS disease.
On that sober note I'll stop rambling.
Thank you all for your posts! They keep me feeling sane.
Hugs,
Peggy0 -
Good for you getting another onco! What you say is so true. It's liberating to know it's not just you. I had to end one friendship, in part, because she kept telling me that I should...help my daughter move, travel, etc. She said that I was using how I felt "as a convenient excuse" for not doing things, She lives a thousand miles away and so she never even saw me but she told me that "all of her friends who have had chemo are fine". I could not listen to that nonsense anymore. I knew she was clueless but it still got to me. So, I distanced myself to protect myself. We are the ones who really understand, no one else has any idea. But it helps to hear a dr say what your dr said. It's just the plain truth! And it gives us hope. Believing that the way we feel a few months out is the way we'll feel forever is HORRIBLE!
Your story really drives home how we have to advocate for ourselves and not just accept, passively whatever we're told.0 -
Timbuktu - congrats on the new baby in the family. How exciting.
Janet M - I slept the best I have in ages without meds, too. I'm thinking there is something to my new limited activity plan.
Peggy - I am TNBC too. And I see we were diagnosed around the same time. Thank you for sharing what the new Onc said to you. It does make me feel more "normal". TNBC is a weird diagnosis to have isn't it? I can't imagine having ALS and TNBC. That poor woman.
Today my three things are: decorate for Christmas, run a couple of errands and then volunteer for an hour at my kids' school for the school book fair. I get to "help" kids pick out books that they might want to buy. I love books so I am excited about doing this. Of course, my three little darlings brought home their book wish lists last night and I was floored by the prices. I'm giving myself dinner off tonight. It's either leftovers or pizza - I haven't decided yet.
Here's hoping for another restful night.
Robin0 -
Good morning ladies ,
I have not posted in quite awhile, but have been keeping up with everyone's posts on a daily basis. Although I have read them all, I'm not quite sure I know where to start, because there is so much to say to all of you wonderful women! I guess I'll just go with stream of consciousness....
I'll start with a big welcome to all of the ladies who have more recently joined us (hi julieho, HHcats, ginger, misslisa, honeybair and all others). The level of support and understanding on this thread simply amazes me and even in your first posts, you have brought so much to all of us. Please keep coming back as needed and provide more of the support you have already given. You never know when something you write on here may resonate with someone and make their day a little easier to get through.
Welcome to those who have been following this thread, but have not posted. When and if you feel comfortable sharing your feelings and experiences, we will welcome them with open arms. This really is a safe place.
One of the things I love the most about his thread is that it validates the way people are feeling. When I was at my worst, after surgery, chemo. and radiation were done, and everyone thought I should be just fine (and I was pretending I was fine), I made an appointment with my BS because I thought I felt another lump. I shared my feelings with him and he said the year(s) after treatment are worse than the year(s) during treatment. He said that he told me that when I was first diagnosed, but I didn't remember it at the time, probably because I was focusing on my treatment plan (which was more critical at that point). Regardless, he certainly believed it was a normal reaction on a normal timeline. I was relieved to hear that from him. I hope that helps each of you.
I know that when I was in active treatment, I put on a very brave face and did really well. Some of the early posters called this time when our "warriors" were brought out and we were in "fight mode". I didn't realize I had a warrior spirit or the abilitiy to go into fight mode, but I did, as did all of you, when you needed it. The tough work definitiely comes after active treatment, when we are faced with the reality of what we have been through and what the future might hold. We said many times in the early posts that this is totally counter-intuitive but it is definitely our reality. People who have not been through it simply don't understand that the real work starts after active treatment ends. I have shared this reality with many people and they give me a funny look because it doesn't make sense to them.
And now...a little message of hope for those that might benefit. When I started this thread, I was about 3 months post-treatment and I was a complete mess. I was crying daily, unable to get even the smallest tasks done, unable to focus, and terrified of a recurrence. If you read my initial post and the early ones, this comes through. Now, a year an a half later, I truly believe I am better than I was before I was diagnosed. I have more compassion for others, I am more tolerant, I feel blessed and I feel I am contributing in a positive way to my family, friends, and the world. I take things more in stride and realize I have only a certain amount of control over things. Each and every one of you will get there, too. It just takes time...A LOT of time.
To those with small children...I have 5 kids, so I really get where you are coming from. When I was diagnosed, they were between the ages of 3-15. All I really cared about was how this was going to effect them and all I could think was, thank God it wasn't one of them or my husband that got sick. That would have killed me. My unsolicited advice is to give them attention when you can and in the best way you can at the time. Sometimes just sitting and coloring a page is all you can do, and my guess is that they will be grateful for that. When I was too sad or tired to engage with them, I would suggest we put on a movie and get cozy under blankets. They loved that and it gave me a chance to rest. It's not a bad thing for kids to understand that they need to give mom a break. It teaches them kindness and compassion. Parents are often too hard on themselves, so give yourself a break.
Be gentle with yourselves, ladies. Try not to expect too much of yourselves, particularly when you are having a bad day. Take on small, manageable tasks so that you can enjoy a sense of accomplishment when they are done. Eventually, as your strength and energy come back, those small tasks will become bigger tasks. But don't expect too much of yourselves in the early days. I couldn't do much when my head and heart were not in good places. Now I am in a better position to tackle big jobs because I have put things in perspective. It takes time, but it happens. You can see it through the posts of some of the women who have been on this board for awhile. In the early days, we were all a mess but as time went on, each of us got better little by little.
Timbuktu and Julieho...congrats on the additions to your family. There is nothing like a little baby to bring hope.
Janet, Purl, Wintersocks, cfdr, Lisa, PeggySull, Lilly, Dunes, scottie, and all the other ladies who have been on here keeping it real...hello!!!
You are all in my thoughts and prayers each and every day. Hang in there, ladies. My grandmother always said, "time heals all wounds". It definitely gets better with time...lots and lots of time.
Rabbit430 -
Rabbit - Beautifully written. And so nice to hear from you. I remember your early days, and your progress is spectacular. I always knew you'd get to this place, but I still feel moved to tears., especially since you're feeling even better than before..
To all the new girls - you will get there. It won't be tomorrow, or even next week, but your good days will become more and more frequent, until one day you wake up realizing that you are stronger than before.
Here's to taking bigger steps, sisters!0 -
Rabbit - thank you for the advice. I really need to hear from women who've been there and done this with young kids.
Yesterday I had a real epiphany. A friend of mine from these boards wrote me and said that early on in this process she had to figure out if she was living or just trying not to die. For me that sums up the last year and so of my life - trying not to die. And pretending it was all OK and very matter-of-fact as to not freak out my kids. So yesterday, I actually looked at how I've been living lately and realized that living at a million miles an hour is not working - it's just wearing me out. It like I had to live all this life NOW because what if there wasn't a LATER? Well that is just not the way to approach this. There is going to be a later and cramming everything into NOW meant I was enjoying nothing. The daily crying jags are not fun and the fog I am sometimes in scares me. But you gotta start somewhere, right . . .
So I stepped out of the chaos and invited me husband to have a nice meal with me once we got the kids in bed and we then watched a little TV. I decided that I wasn't going to French today and I was just going to see what happened. So instead, I got the kids off to school and they were so excited because it's book fair day and then came home and worked out for an hour. I made myself stay on the elliptical until an hour had passed to show myself that I still had it in me. I've been having a horrible time lately with the working out and eating. I'm tired and depressed and it's both a reason and an excuse. So I don't want to work out and I crave sugar. I had a real awakening to the impact of the last couple of weeks because the scale has finally moved since my DIEP and it went slightly in the wrong direction. It's a good wake-up call to clean my diet back up (I was doing so well for so long) and lace up those sneakers more often (as I had been since my DIEP). I think I fell off the wagon because I was doing it for all the wrong reasons - I was trying to stave off a recurrence by eating the right stuff, doing the right stuff, and in short putting a whole lot of pressure on myself. I should be eating better and working out because it makes me feel better. Which it does.
After my workout, I went shopping. I went to our local supermarket and bought us salmon and salad for dinner tonight. Then I sat myself down there and ate a cup of soup for lunch. I've been skipping lunch or making all the wrong choices when I had lunch. After that I felt I had the energy to do some Christmas shopping so I went to Toys R Us.
Now I am back home and decided to make dinner now - because my girls have synchronized swimming tonight and it's right in the middle of when I normally would make and serve dinner. It's a messed up night. The best part of synchro is that my 9 year-old son will go with us and let's just say that he'd rather poke his eyes out than go and sit there and watch! He and I will do some math, I think. Oh he'll just love that.
I will confess to you ladies that I am sort of dreading this weekend already. I'm going to have to take my girls to skating lessons and tying two pairs of skates is not my forte. I'm originally from The States so skating is not in my blood. Then I have to take them both for haircuts. This sounds easier than it is. I have to entertain one twin while the other one gets her hair cut - thank God for iPads. On Sunday we will go to my husband's firm children's Christmas party. 3 hours of festive fun. I'll do it for the kids. At least my son doesn't have a hockey game that day. I'm really going to have to pace myself this weekend.
Now that I have that off my chest, I'm going to kick back for the rest of the day until it's time to pick up the kids from school.
Thanks for making me feel normal.
Robin0 -
Rabbit and Janet,
I am moved to tears. Thank you so much for your post - and Rabbit for starting this thread.
It is so helpful to hear that time really does work wonders. Intellectually I know this from my own experience. Over time my response to other traumatic and difficult periods of my life lessened and like Rabbit, actually transformed me in a positive way.
You women bring a ray of light to the shadows we live in post cancer diagnosis and treatment.
I still awake most days in fear, tears come too easily and fatigue and depression takes hold but, even as the actual days are getting shorter, the periods of darkness for me is lessening - it can't be measured yet in days, but over the last several months I do recognize it is better.
Hearing from both of you, Rabbit and Janet, gives me such hope. Hearing from others one this thread, sharing our daily struggles, "victories" and fears also brings me hop and a sense of belonging, identification and fellowship which is so important for healing.
Thank you all so much,
Julieho0 -
I am so glad we have a place to discuss our emotions. We all really need this to realize we are not alone in our feelings. My husband and I are singers and we often perform as a duet. Right now we are working on our Christmas repertoire and I am finding that just singing old familiar lyrics is bringing me to tears and my husband is puzzled about my reaction. Even I do not understand why this is happening to me. I am almost to the end of my treatments. Today is the final day of radiation and I completed physical therapy as well. Someone mentioned warrior mode. Does leaving that place enable us to really feel what we have been dealing with?
For those of you with young children, my heart is so with you. I remember each of you in my prayers daily.0 -
Honeybair - thank you for your prayers! I just read your post and wanted to let you know that I'm in the same boat. Yesterday I was putting up our Christmas decorations and just pulling out the old familiar things that I've had for years brought me to tears. I just suddenly thought - who will do this if I die? When I told my husband this he said "No one. So there!" I honestly can't see him placing the snowmen and the santas in the "proper" positions in my display case - so he's likely right. God love this man - he sat there with me last night while I rambled on about my feelings when he probably much would have rather watched the hockey game!
I think you are right - once Warrior mode is over - it's as though we are allowed to actually feel what we suppressed to get through treatment. I spent a lot of time while in treatment letting everyone know how OK I was and how I was sailing through things - especially in front of my kids. Now I still have to put on a bit of a show for them so I find it a very difficult time. I'm losing it but have to suck it up because I worry it will freak out the kids.
I've come to the conclusion that losing it from time to time (daily for me) is part of the process of healing. It's like chemo - something I have to get through. Just reading the posts from the women on this thread made me realize there is sort of a time limit on this and that made me feel much better.
Congrats on finishing radiation and PT. That's a huge step.
Hang in there
Robin0 -
Thanks Robin, I just read a quote from one of my journals the other day. It said, that cures come from without, but healing comes from within. Much wisdom in those words. So I believe that we all must embark upon a healing journey. And allowing ourselves to submit to our feelings is a major part of the healing process. We have the right. We have earned it.0 -
It takes LOTS AND LOTS of time. Damn straight. I wish the doctors would tell you that up front. Then, if you have one good day 8 months out, it feels like an achievement, not a failure.
HHCats, I totally get the "I better live for today because I might not be here tomorrow". If I were independently wealthy, it would be so easy to just do fulfilling, enjoyable things all day long! But alas, I'm not, and 3 years of working part-time has wrecked my bank account. I signed up for a rigorous art program, I'm in my third class (each one is a month long) but beginning to regret it. Much as I want to fulfill this life-long dream, I'm starting to have anxiety dreams about getting my homework done on time! On the one hand, it's great to have enough energy that I can even consider it. OTOH, WTF am I doing adding more stress to my life???
I've been doing so much more, but after dinner, it's one too many glasses of wine and one too many episodes of old TV shows on DVD. I'm in total escapism mode. But I realize that this is just the current phase of my recovery. Eventually I'll plow through all 7 seasons of Buffy the Vampire Slayer, I've already finished all 5 books in the Game of Thrones series (but haven't seen the TV show yet! Oh boy! More fluff to escape into!). On the one hand, it's comforting to know that I can dig out 44 minutes every night to do homework...all I need to do is turn off the TV, delay the glass of wine for an hour, and maintain my focus just a little bit longer.
Maybe that will happen for me in January. Maybe sooner. Maybe never. I've learned not to put myself on a schedule, because it just doesn't work.0 -
Go with the dream! Yes it adds stress. Yes it will tire you a bit. But it's your DREAM! You are DOING it. You are LIVING! I SO get it and I hope you can make your dream come true. In the end, that's the whole point. In the end you won't regret it. In the end all the rest will fade away and your art will be there and you will smile. Oh it makes me happy just to think of what you are doing! Go, go, go Cf!!!0 -
HHCats, cfdr, and others,
Seems like in one way or another we're talking recently about time and energy management post treatment.
On the same page with you all today. Also, I can't find who wrote about poor sleep being related to doing too much during the day...Yesterday was my best day yet creatively since this whole BC thing began. I have had very little impetus to create since my dx, close to none. I had a small taste of it over the past two weeks, but nothing to write home about (and home right now is here on this thread).
So, yesterday, feeling the creative juices really flowing, I did way way too much, mentally and physically. Instead of three things (which makes a lot of sense to me intuitively) I did about twelve. All of them related to creating and none to self care. Oh, I did run an errand for my husband. Last night I had the worst night's sleep in a long time. It's as if my unconscious was saying through my sleep--yesterday was not the way to go.
It's hard to feel hopeful on the really bad days, and it seems as if it's going to take work and limit setting to create some balance on the good days. I'm hap hap happy to have had a good day but by overdoing it I'm so tired today that I can hardly do anything. The one thing I will do is keep my commitment to have lunch with a friend whom I cherish but haven't seen in awhile because of location. We're meeting half way. Right now I'll make the meat loaf I procrastinated making last night and that's it. Not even going to make the beds.
To echo others, those of you who have young children, WOW, you're still having to be warriors, at least a big part of your time. Having my hyperactive 7 year old grandson over several hours twice a week flattens me out!
Rabbit, thanks for all the summations and reminders and hope for all of us!
On to the meat loaf, that Herculean task!
Hugs,
Peggy0 -
You cook? Wow!0 -
Cfdr - OK I hear you about the homework. I took up French class because I'm up here in Canada, always wanted to try to learn it (I'm bilingual in Spanish) and my girls are now in French Immersion so someone might need to help them. Yesterday, I blew off French class, French homework, French Rosetta Stone. Just couldn't bear the thought of more work. Like you I took this up because it was a dream but when you are tired and just want escapism TV (oh how I love Rizzoli and Isles, Duck Dynasty and Downton Abbey) - well nothing compares to a couple of hours living someone else's life! I was fretting about French yesterday and like you thought WTF am I doing adding more stress to my life. So I bailed. It was sort of liberating. Hell, I'm 44 and not getting a grade for this class and I did better on the test than most of "the kids" - so I figure I can coast for a little bit. The homework can wait until the weekend. It's INTENSIVE French. Well I have an intensive life - so French can wait.
On a more serious note, today I had a bit of a wakeup call. I met a woman here in town who is Stage IV that previously I had only communicated with via email and phone calls. She is AWESOME. She is now undergoing more chemo and she has kids about my kids' ages. I sat there and thought about my personal situation and thought if she can smile and put this in God's hands - well I need to get there, too. And I will. She told me that no one ever told her to consider her-self cancer-free like I was told and she couldn't wait until her doc told her she would see her in a year if she liked - like mine did with me. I thought somehow I was supposed to meet her now because I need to remember the positive things about my situation. My husband is very good at seeing the positives but I struggle. It's hard to do sometimes - especially since even after a clean margin lumpectomy and scans that were clear - I felt like I had cancer when I underwent treatment. It's not easy to feel that way when you go to the cancer-centre and are treated like a "cancer" patient. My husband one day during treatment looked at me and said "Robin, you don't have cancer. But you are a "cancer" patient. You have to wrap your head around both of those ideas." I still haven't. I might never get there. But listening to her today reminded me of my blessings and while she is still dealing with treatment - I'm on the other side. That's a big deal.
I did manage a workout today and tomorrow is a day off from school for the kids. I'm doing a playdate with the girls and two of their little friends. I didn't get to do any playdates for my kids last year - they always had to go to someone else's place. So progress is being made. Then the rest of the day we are just crashing at home. The kids can play and I can hang out and read. One good thing from last year was the fact that everyone got used to entertaining themselves.
Oh and so far - no crying jag today! YES!
But there's always tomorrow . . .LOL I'll take what I can get.
Peggy - meatloaf sounds awesome.
Timbuktu - I try to "cook" but tonight the kids asked for pizza and I welcomed the idea!
Hugs to all
Robin0 -
Robin what a great post. You are so right about letting things go when we need to. I also loved what you said about meeting the woman with stage IV cancer and how that helped remind you of your blessings.
I also had a very cathartic day. I went in to the Cancer center today, my oncologist scheduled an appointment with one of the breast doctor's there who specializes in lymphodema - which I only have on the side I had so many infections on post re-construction. But, more importantly, and I think why my wonderful oncologist sent me to her, is that she too had breast cancer 15 years ago, she also had a bi-lateral mastectomy, she chose not to do reconstruction and had and still has residual pain and inflammation on her one side.
My meeting with her was amazing. She treated me more like a fellow breast cancer survivor than a patient. She told me that the year after she finished all her treatment was the toughest year of all for her. That she had no idea who she was, what to do next and why she felt so awful emotionally. Standing before me was this very accomplished doctor who is about 15 years older than me now, so I am guessing she had her cancer, surgeries and chemo about the same age I had mine. I couldn't believe she was saying she felt this way too. She said it took time, a year or two before she "felt" better emotionally and even started to feel normal again. Which she said is still different than the "normal" she was before her cancer. Physically she said if she has a tough day or is tired her pain is a problem and the rest of the time it sort of slips into a place of just - this is who I am now.
I told her how much this discussion board thread has helped me to find other women who can identify with this. She was so happy we had eachother.
She also said that even though her husband and kids and friends and colleagues were WONDERFUL and supportive during her year of surgery and treatment that what is also hard about the next year is everyone has sort of "moved on" and wants us to be doing the same.
She reminded me, which Rabbit and Janet and others on here have also done, that we do move on, things improve over time, our ability to put this in a place that is not so overwhelming gets better over time and I am grateful for that.
I did shed quite a few tears as she shared this with me today. But, it is often the same way I cry when I read many of your post.
Sending love and feeling so grateful to have all of you here.
Take care.0 -
Julieho - how incredible you had your meeting on the same day as I had mine. I really feel that things happen for a reason. It had to be really awesome to meet this doctor as a comrade in arms. It is good to hear over and over again that it will get better and it just takes time. When you said she said she didn't know where she really belonged during that year after treatment - it really resonated with me. That's how I feel. My husband will tell me that I'm where I'm supposed to be - raising three kids and I know that's true but I feel so lost sometimes. My husband will tell you and anyone who asks that I missed out on NOTHING last year - that I was me throughout the whole thing - but it feels like a year was taken from me. Goodness knows that none of us would choose to have spent last year doing what we were doing, right? I was supposed to be celebrating having three kids in school full-time and getting to do things for me. Nothing world-changing or dramatic. Just silly things like not living my life in 2 1/2 hour intervals from the time I dropped off kids until the time I picked up kids. I was so excited about that in particular - sad, eh? I had exactly 1 week to live like that until I had my breast ultrasound and the phone call that changed everything.
I'm learning quickly that crying over spilt milk so to speak is doing me no good. But moving on is weirder than I thought. I really thought you finished treatment, had a recovery period and then got back to your old life. Naive, right? But your old life was over a year ago when you think about it and so much has happened between now and then. It's like there is a huge gap in who I really am.
I really mourn that year and although it was filled with beautiful moments in our family and with my friends - it wasn't the same as I expected.
Now it's like I don't know what to expect.
Not sure if this makes any sense.
Hugs
Robin0 -
I think what you girls are saying about 'being able to put everything in it's place' is a really strong point, and a key to why the whole first year is topsy turvy. I really love reading how people are starting to have good days, here and there. Whether it's one or two accomplishments, (or none), is irrelevant. The door is open. I have mostly good days, and I feel I'm on really firm footing, but yesterday the bottom just fell out. I was just so blue, and tired, and really hated everyone around me. Even my clothes were really bugging me, and I wanted to rip them off and just crawl into my pajamas. I felt like Kathy Bates in the parking lot in 'Fried Green Tomatoes' when she deliberately smashed her car into someone else's. I wanted to do that so badly. At the end of the day I was thinking about going home to Jim, and how much happier I'd be if I lived alone, and fantasized about getting a divorce, or locking him in the basement. But even though my day was about a 1/10, I knew it was temporary. I knew for certain it was a one day deal and that I was having a minor blip. As my mom says, I was just 'riding a bad wave'. So even though I was b*tchy and weepy and irritable, I didn't have any panic at all. In the end I phoned Jim - but did not ask for a divorce. I told him I was feeling crummy and needed a lot of space when I got home. He thought a better solution was sushi - and he promised I wouldn't have to talk. So we had Sushi, and some Proseco, and watched 'When Harry met Sally'. And - I'm feeling back to my 'new normal' today.
PS Yesterday, during the deep dark blues, I thought about musical chairs. And how my post surgery game was like an ongoing game of musical chairs, where I kept running in circles and never found a seat. These days I would find my seat - for sure.
I'm rooting for every one of your ladies. Celebrate your tiny triumphs!0 -
Hi,
My lunch yesterday with my friend was fantastic but the rest of the day was me in a fog. Brain and body felt like they had reached the point of total exhaustion. So tired I was hyper and had to take Ativan to get to sleep.
I love the metaphor for bad days--riding a bad wave. I love body surfing and I can visually imagine now what kind of wave my day was. Thanks, Janet M!
I'm going to limit my activities to three today:
1. Aerobic exercise and yoga
2. Wash clothes
3. (The best)--playing with my quilting fabric for next quilt and possibly making a little headway on the the current one.
I was going to cook but now I've decided it's eating out or carry out.
I want to see how I sleep tonight?!
Hope all your waves are good today. Special wishes to the women with young children to get enough self care to balance your caring for your children!
Hugs,
Peggy0
