Why was I stronger DURING treatment than I am now?
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Dila,
I have gone to a support group at my local C center. Its for women with cancer, any type. Most of us though have BC. I have only went two times. The first was very awkward, I was the youngest by 20 years! But I gave it another go...met another teacher the next time who was DX at 43, she is now 59 but we seem to have alot in common. I will keep going so I have somewhere that I dont feel like the odd man out so to speak. Everyone there, no matter what their age, gets it. Gets how hard it is in this limbo.
Tim: Thank you so much for posting about how you would feel if your daughter got BC.. about not being able to handle it. I have been very angry and really hurt by my mom's distance from me. I think maybe this explains it. When I had my BMX, she did not come to help my husband take care of me, and it really hurt my feelings, she was there when I had my twins, she was my rock when my hubby passed out..LOL but she did not come to help out after my surgery or during chemotherapy. My Dad confessed that he tried to talk her into coming but she made the excuse that she had to stay at her house to take care of her dog. Really? I felt second to a dog! Recently, they came to my house for Thanksgiving. You guessed it, I cooked the turkey, oh well...but she also had not seen me with my super short hair. Before BC had long hair. She could hardly look at me. We talked but little direct eye contact. She just said that I looked too thin...Yea well, I have been though two surgeries and four rounds of chemo, thanks.
I have a daughter that is 19, I do talk to her about it. She is in nursing school though and maybe that helps. We are very close and always have been. I would go to her if she were sick no matter where she was or what she had, but thats me. I will think hard about what you said. Maybe I can forgive her now.
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Dila, you may not have BRCA but I think you have something! I know someone else who has a family history like that and even though she didn't get it, she had both breasts removed. She said the drs said they don't know what it is, but it's something, They still have a lot to learn. What an ordeal! Hang in there!
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Gully, I do hope it helps. In the end we have not choice but to forgive. I know what you mean when you say "if it was me". So many times I've been flummoxed by how people behave. I always try to understand and when I can't I get hurt. I always think "if it was me...". But people are different. I'm glad you are close to your daughter. I have two daughters and we get on each others nerves, as much as I love them. The way you describe your mom, I can just feel her pain. When my mom got it she kept saying "better me than you". It was as though she was hoping that she could protect me by getting sick herself. She died before I got it.
Years ago, when I had my son, who is now 36, I got very sick with pre eclampsia. I was in the hospital for 17 days. My father came to see me once. He and I were extremely close. He walked up to the door of my room and saw me hooked up to a million tubes and he turned white. He turned around and fled. I knew that was the greatest act of love imaginable. Sometimes we can care too much.
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thank you all...
still sick...massive headaches..
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Gully, I know it must really hurt and no excuses for your mom. Before my sister passed away we were both going through treatment at the same time, and because we were both in different states neither or us knew what the other looked like during our treatments but we talked almost every day. People used to always tell me that I looked good or sounded good, but I didn't know what that meant... what were they expecting me to look like or sound like? My husband said to me have you ever seen someone who has been really sick with cancer, that has lost so much weight. My response was no. With all those in my family that has had cancer I hadn't seen them while they were going through what ever their treatment was. I said all that to say... we never really know how we will respond to our loved ones being sick and seeing them until we are in that situation. My husbands cousin has been battling sarcodosis for a long time and has lost so much weight that when I saw her I had a hard time looking at her. I knew he had told me but I wasn't prepared for what I was going to see when I saw her. It was really hard to see my sister in the last couple of months before her passing and as a mother I know it would be even harder to see my child. The word cancer alone is scary and we need all of our loved ones in our corner. Have you told your mom how you feel or felt?
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Just gone 12 here in GB and Big Ben has struck. Wishing all lovely ladies on here the best 2014. xxx
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How cool, winter! I stayed up past midnight..in England!
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Happy and HEALTHY New Year to everyone!
I hope everyone is doing well. Or as good as can be expected. Just wanted to pop on and tell you all I am hoping we all continue on our path of recovery and support together.
Much love,
Julieho
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Julieho, I was looking at your treatment and I notice that you did Carboplatin did it make you have neuropathy? The first doctor I was suppose to see said that was the treatment I was suppose to have but when I went to the new place closer to home they gave me Cytoxan instead because they said it causes neuropathy.
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Happy New Year everyone! Thank you for all your support and kindness these last couple of months. I wish us all strength and happiness in the new year.
Robin
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Happy New Year to you all!
Yesterday at the dawn of the New Year I started on a creative project and didn't quit until bedtime! This is the FIRST time since treatment ended with my revision surgery early September that I've been able to do anything truly creative. I hope this bodes well for 2014!
Hugs,
Peggy
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I think it will. I went to the gym and walked on the treadmill for an entire half hour. After chemo I was wiped out after 10 minutes. Something good has happened since then and I hope it will continue...for all of us.
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I love the post the first two days of the new year. Yes, lets all start anew this year, but, continue to support and help oneanother.
Dlia, I do have some neuropathy and terrible muscular/joint and ligament pain, which unfortunately seems to be progressing instead of improving since chemo stopped. I was never told it was the carboplatin specifically. I think both the chemos I had were heavy duty because my HERs positive was a mixed bag. The first pathology lab said I was a 3 on the HER2 test - which means a definite positive. Then we sent everything to Boston and that hospital's lab showed I was negative for HER2. The two pathologist conferred and sent it to the Mayo clinic for the fish test and that came back inconclusive. So, all the teams agreed that because the one pathology said a positive they wanted to treat me with perception because it was so deadly if I was not treated for HER2, but, the crappy part was they also gave me the chemo they would perscribe a triple negative diagnosis, because that is also not a good diagnosis, in case I was in fact HER2 negative. So, lucky me I get heavy duty all around.
Anyway, it is hopefully behind me.
Much love to all,
Julieho
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spent new years in the emergency... have the flu..a sinus infection...and more blood clots...
i so want to feel better... im angry that i am sick all the time..
when im healthy again...boy am i gonna appreciate it!
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CelineFlower,
So sorry you are sick. I hate that so much. You get a decent routine going and then illness slaps you down.
You're right, though, nothing like it to make you appreciate when you're healthy! Last Christmas I was glued to my couch nauseous all the time. Wow, did I appreciate this Christmas! Don't even want to see the decorations go back into storage.
Feel better soon!
Hugs,
Peggy ,
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thx peggy trying to get lost in the Doctor
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CelineFlower - It's so easy to get discouraged, and spending New Years in emergency is really crummy. Especially after all you've been through lin 2013 . I remember having hiccups in my recovery too and thinking 'Oh come on. Just give me a f*cking break.'
I also listened to guided meditation as a way to heal from my DIEP. One of the things that stuck with my was wanting to heal, 'not for the fear of being sick, but to heal for the joy of living'. The speaker then went on to suggest we picture ourselves doing something with our 'vibrant, healthy' bodies. Each time, I pictured myself on a tennis court, jumping in the air and serving a ball. The thing is - I hate tennis, and haven't played for years. I also have always had zero upper body strength and have never had a decent serve. Regardless, I always kept going back to the image of myself jumping in the air. I'm at a stage now where I'm pretty active, (no tennis) and I love the fact that I can throw a ball with my dog. It took a while to get here - and I don't take it for granted.
I'm not suggesting meditation, I just like the idea of healing for the joy of living. When I was weak and frustrated, I tried to remember all the ways I love life. It made me less angry, and more patient of my loooong recovery.
You will be healthy again, and it will be joyous once you get there. In the meantime, I hope you can heal well, and rest calmly. And warmly.
Janet
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thank you janet...great advice... ill get back to you:)
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I'll pipe in here to say that I highly recommend meditation. I did it sort of haphazardly, when I had the time or felt particularly stressed, but doing it regularly really does make a difference in my anxiety level.
I also started tai chi in September. I did not credit my improvement in fatigue to tai chi, but I did start feeling better around the time I started doing it. It's very easy and very forgiving. Also a lot of fun! It took me 4 months to learn the entire set of 108 moves, and it's a real feeling of accomplishment to have done so. I don't know it well enough to do it on my own yet; I still need to be watching the teachers through about 2/3 of it. It's sometimes called "moving meditation" so if you don't have the patience to sit and contemplate your breathing for 30 minutes, it's a nice alternative.
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Janet: You made me snort at work again! Love your attitude; always have.
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Aww thanks Purl. That means a lot to me. Especially since only you ladies truly understand the deep dark blues, and the the slow climb back to life. I was going to say 'bouncing back' - cus you gave me the perfect visual - but I think slow climb is more appropriate.
No complaints today though - except for the weather. -24 C here in Toronto, and I'm wearing so many clothes that I don't even notice the parts of me that are numb, or sore, or swollen. I figure that if I can make it through this deep freeze without a meltdown, I'm in pretty good shape. Wish I could same the same for my sweet basset hound. He is MISERABLE! He hates wearing a coat, and he hates the slippery sidewalk. I hope you gals are all safe and warm tonight.
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thx... yup warm... resting... still sick...sigh
going to apps tomorow...thank goodness or id never go anywhere..
My dog doesnt much like this weather and shes part husky
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Hello!
I am mostly new here, although I have been stalking this particular thread for several days and feel a bit better just knowing that you are all out there. I have finally mustered the emotional fortitude to post, although I am still at a loss as to where I should even begin. I think maybe a summary/rant. Here goes.
A year ago I had beautiful hair down to the middle of my back, a bright smile and a fairly active life. I am the mother of 4 ages 25, 23, 18 and 16 and have been with my husband for 19 years. I had just completed my first year in college and was running my own small sewing business from my home. I started a family at an early age so I was thrilled to finally be doing something for me.
I finished chemo the end of August and still seem to have chemo brain. I can't seem to stay focused on anything for any length of time and it is driving me nuts! I am on Tamoxifen now and seem to cry about everything. I am not usually an emotional person and lately just about anything could potentially trigger a melt down. I have managed to gain 20 lbs through chemo and now Tamoxifen and I have absolutely terrible hair. Bottom line - Nobody told me coping AFTER the cancer was going to be worse for me than the cancer itself was. During the process of Dx I had a great attitude. During chemo and radiation I just tried to smile through it. I didn't want my kids and husband to have to care for me, and didn't want them to see what it was really like so I did my makeup and got dressed almost every day.
Now I am a basket case with no energy. I had to drop out of school because of a terrible staph infection that had me on painkillers and anxiety meds for weeks. I am just now starting to be able to craft and sew again even though the neuropathy is still hanging around in my fingertips and toes. Some days I am thrilled to be alive and that I have hair at all. Other days I just want my life back and to be pretty (or feel pretty) again. My husband tells me I am beautiful every single day and tells me that I am being way too hard on myself. My daughter is convinced that I am pushing my recovery too much so I am suffering setbacks.
I think I just need somewhere that I can be honest. I know there is a light at the end of the tunnel and I am well on my way. Any advise on untangling the emotions and rebuilding life?
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Flutter, you have come to the right place. Reading your post was like reading my own mind. It is odd how they don't tell you to expect this. But here we are, all in the same boat. I've had ALL of it too. Still have ups and downs, just when I think I'm on the way up, BAM!
Yes, you can be honest here. Not only is it good for you, I think it's good for the rest of us who may feel alone.
Sorry you have to be here, but welcome.
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Miss Flutter: Welcome and know that you are not alone for a second! I found it so difficult until I found this thread to find one person to understand my feelings “after treatment”. I, like you, was in a great place, feeling fantastic….then Bam… the lump. During the year of treatment ~ did great. For me, as life continued…I started feeling lost/angry/tired ~ why did I go through all that and now feel and look like crap (and like I’m about 100 years old). I am better with time but am really not patient anymore with people that have petty concerns or drive like nimrods. It really helps to read these posts and post/rant when you feel it. I’m at work, so I must run, but whenever I start to feel “those feelings” of sadness/anger/fatigue I try to stop and immediately do that thing the answers the question, “What do I need at this moment for myself”. I hope you can freely sewing without pain very soon. We are here!
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Flutterby,
I have found that lowering one's expectations of oneself first thing in the morning helps at this stage. If my expectations. Are low enough, the day is usually better (and sometimes great). On the other hand, if I have a big plan in the morning, I'm usually in tears by noon. Lurking here is good when feeling down. Nothing worse than feeling alone in the pits.
We're all in this post-treatment together!
Hugs,
Peggy
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Sheesh, I finished chemo in February and have been going through reconstruction. I was on my way to my "new life." But then my eye had a "stroke" and my vision is lost, my DH lost his job last month, my DD had a panic attack at work and had to take Dec. off, my brother has a heart infection (I'm his guardian). I have LE in both arms. I tried to get counseling but it hasn't worked out. First lady wasn't a fit, second lady got the flu, then pneumonia, third lady didn't call back....can't really afford it anyway, obviously. At least I'm not crying every day and I'm coping better. I am writing in a gratitude journal, trying to turn my perspective around. My faith has taken a hit. I just need a f'ing break. I thought it might help to share it here. Not only do I worry about bc coming back but I worry about my other eye stroking, thus going blind, my DH finding a job, my DD, my bro, my lymphedema.....time to write in that journal, I guess.
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Jeannie, there are unsung heroes in this world and you are one!
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Nicely said Timbuktu. Nicely said. If you can see Jeannie's image...I haven't seen sweeter smiling eyes!
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I think it's the photo that really moved me. Such courage!
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