Why was I stronger DURING treatment than I am now?
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Susan, I am so sorry about your brother. I was with my sister and mom when they passed so I know how very hard that is.yes it is hard not to go crazy from all the worry. I remember the waiting about the chemo- That was sooo hard to wait for that onco test results to come back then I was an 18 so on the line between low and medium which stressed me even more- I find it hard to trust doctors especially if they run in say- no chemo for you, and then leave after you waited and waited- I wanted to know why? grrrrr..
Hugs to you Susan!!
TJ
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Thanks TJ. They told me 12/22 no chemo. Now MO had second thoughts. I thought I was done with treatment. Lab was delayed sending out for test so we wasted 5 weeks. GRR! Well it has given me a chance to work on getting in shape so maybe it's ok after all. Sorry about your loved ones too. You have to have been there to understand. It was a gift to be able to help him!
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ndgrrl, I'm so sorry you've lost so many family members to this wretched disease. I have a lot of the same feelings you do. I felt a big letdown when treatment was over. I totally understand about needing to take control of something too. In fact, you reminded me that during treatment I had vowed I'd take control with a good exercise plan and lose the weight I'd gained during treatment. I kind of fell off that wagon because I also started reconstruction in November (another way to take control), but it's time to get back to it. It is sometimes hard to trust the doctors. They all seem to have different opinions on what is needed. You'd think there would be one right way to treat this, but there isn't. What pisses me off is when they don't tell you things. The plastic surgeon I consulted before my mastectomy neglected to tell me that radiation would limit my reconstruction options. Instead he told me I could have "any procedure I wanted at any time." Consequently, I opted for delayed reconstruction only to find out later that implants would likely fail because of the damage radiation to my skin and muscle. The RO also never mentioned that the radiation permanently damages your tissues. Because of previous surgeries, "any procedure I wanted" turned out to just one procedure - the LD flap. I had been adamant about not wanting any flap procedures when I talked to that PS. I guess he didn't listen. Talk about lack of control. My options were stay flat or have the LD flap. I bit the bullet and had it. Needless to say, I used a different plastic surgeon. I'm still pissed the first guy, but overall, I'm glad I had it. I can get dressed and look normal without having to wear the uncomfortable prostheses.
That's really interesting about Tamoxifen and liver cancer. I'm taking Tamoxifen. I'll have to ask my MO about this. Great.
Chloesmom, I'm so sorry about your brother. I hope your oncotype score is low, low, low.
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2 Tabbies I can relate to everything you say. I was also not informed of reconstruction options. I was told I should have a breast reduction and or breast lift- no one told me it had to be done before radiation. So when I did see the PS he told me he would not do any surgery on my radiated breast because I would not heal so the only option was to fill in the dent with fat grafting. Why do they not tell us things?Also I begged and begged and finally after tears my MO decided to finally give me a MRI and it came back with 2 nodules I have to watch but he failed to tell me this. He told me everything was fine I could be happy and calm now- JERK-- I went to the radiologist for my ultrasound several months later and she told me, I looked at her like she had two heads- She said you hadn't been told had you. She told me I had one nodule- so later the same day I went to the radiologist and he told me I had two. grrrrrrrrrrrr.... Did the MO not think I would eventually find out he had not told me things? He probably didn't care as he went back home to Columbia and I am dealing with the Oncologist who is subbing in - He is quite funny and 75..
Chloes, Waiting is so very difficult- I wish you the best. Why did the MO decide to change his mind? sheesh..... I swear they forget about our mental health!!!
TJ
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The MO didn't change mind. Had not seen an MO yet and BS said I wouldn't need chemo The BS was supposed to ask onco if I needed test as I was grade1,stage 1 ER+. I asked for test anyhow as wanted to know. BS nurse said she never got message to call MO. When I saw MO for 1st time 4 weeks after surgery she said since PR- more chance that a medium range onco number would warrant chemo.
I had already told everyone let's celebrate and now the Fam and friends are all thinking I'm on the home stretch. Will know Tues or Wed.
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ndgrrl, it sounds like you're well rid of that MO. A couple "suspicious areas" in my MRI were why I opted for a BMX. They turned out not to be cancer, but with my history, I'm sure there would have eventually been more spots that needed biopsying, etc. I decided enough was enough. Regarding why they don't tell us things, you've got me. I think sometimes they're trying to spare us worries about things that might not happen. My RO said that's why nobody mentioned that I could end up with a dead sex life after all this. I asked why nobody mentioned that. She said because "it doesn't happen to everyone." Excuse me, but it happens to a lot of us. We should be warned, or at the very least, somebody should have been asking me about it after treatment. Nobody mentioned it. I had to ask, and they were of precious little help. Someday I'll stop being mad about all this shit. I'm cranky today because I went to the funeral of a friend who died way to early. Not cancer. Heart attack.
Chloesmom, hoping and praying for no chemo for you!
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Thanks for good wishes.
Waiting for the oncotype isn't as bad as waiting for the original diagnosis, but is consuming a bit of energy. I am planning to talk to a therapist when the dust settles. So much energy has been out into all the planning, appts, writing thank you cards, going through clothes to see what I have to pitch..... Haven't had time to process the reality of this potentially killer diagnosis. The only time I cried was when I found out the lab was backed up hadn't sent the tumor specimen to the oncotype place and this call was delayed another week. Wondering when it is all going to hit me.
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chloesmom, looks like you have a really good diagnosis. I think you're going to be fine. Hang in there!
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I've been off this topic for a while. Feel kind of out of the loop with the nice
People posting here.
My current issue is excess body fat. After I recovered from treatment I was so good about my eating and exercising. Then about 9 months ago I just let things get out of hand (e.g., eating way too many sweets). In those 9 months I gained 15 of the 20 pounds back even though I was still exercising some. All around the abdomen where it is most dangerous.
I want to get back that zeal I used to have about keeping health a first priority. So I've got back to daily exercise and have started a new eating plan that eliminates refined carbs. I'm keeping some biscotti in the house in case of an emotional emergency
. I'm triple neg so all I've got going against recurrence is diet, exercise, some supplements and Metformin. Three weeks ago I found a lump that needed to be biopsied. Thank goodness it turned out to be scar tissue. But it was a wake up call for sure! I've been acting as if I never had BC.Thank goodness to for these boards!
Hugs to you all and glad to be back,
Peggy
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Yeah, food is my downfall. It's been a life long battle and now, even though my life depends on it, I get too hungry not to eat. There is so little that I am able to to do, eating is one pleasure I can do. But it's not good.
Have to find a way!
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You dont need to eat less in quantity, just change what you are eating.....you can actually eat more...take a look at deliciouslyella.com
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ThanksLily, I'll check it out. I was on Seattle Sutton this month and was constantly starving.
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Timbuktu, I was always starving on Weight Watchers. And my weght didn't exactly nosedive.
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HI-I have been on the Medifast program since the very end of July and have nearly lost 40 pounds and I do not exercise that much. If I follow it well I am not hungry. It is just hard to remember to eat every 2 hours. I needed to lose weight to try to control the estrogen in my body.TJ
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Seattle Sutton allows a lot less food than Weight Watchers. WW now is so complicated! Points, etc. But they do allow unlimited fruits and veggies. I have to figure something out! I think I do better when I don't eat little bits all day long, that makes me so hungry! And carbs.
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I am reading about atkins, and it really does seem that carbs are the enemy. As soon as I finish reading two books about it, I think I am gonna give it a go. I never had any problem, was always lean, until chemo whacked my metabolism, that and the steroids, i think. I did get a fitbit too, and that is letting me see areas where i can improve.
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Too many simple carbs are the enemy, but you need sufficient complex carbs.......and enough fat too, but Atkins is too extreme.........before BC I lost 40lbs by dong lower carb and increasing exercise, oh and cutting out the wine as that affects how we metabolise food
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Yes, I was wondering about the sugar in the fruits I love. Before chemo I was pre-diabetes and now I'm diabetic. They told me that would not happen but it has.
They did tell me to eat 9 servings of fruits and vegetables a day. The theory, the research, says that trying not to eat doesn't work. Eating lots of good things works better. Went to gym today...makes me feel great. I could only do 10 minutes on the treadmill on Jan l and today I did 25 minutes. Very encouraging!
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hello friends,
Depressed. very
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wintersocks I am so sorry to hear this. Although I have been pretty depressed too lately.
I think you and I are both healing from a surgery now. I keep thinking that is it. I want to let you know I am here in whatever way we can be of help to one another. This is a long, tough road.
Sending you love...
Julieho
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Winter socks, I just came out of a two month depression. It just sucks the life out of you. When I come out of such a period I feel like a different person in all areas of my life. It helps me to remember that person will emerge again. I journal and it helps to read back to all the positive things I was feeling and doing so I know there's a light at the end of the tunnel.
Therapy and anti-depressant help! Making myself do rote things and stay physically active helps about as much as the former.
Hang in there. The depression will end!
Hugs,
Peggy
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Dr called late Wed to tell me oncotype 25 and with PR- there is less chance (1/3)hormonal therapy will have effect needed to prevent recurrence. Start CT in 2 days. Am too overwhelmed to get depressed. Just anxious
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Julie! You are so beautiful!
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Winter - What's up? Did something happen - or is it the incredibly long hard marathon that you've been running? Talk to us.
Chloesmom - Crap. Was hoping for a low score for you. Remember though - you are STILL in home stretch. It's just that the home stretch got somewhat longer.
( I was told I wouldn't need radiation, but at the last moment - I was told I did. I was so disappointed and it really f*cked with my planned surgeries and the recovery plan I had in my head. So - I can sort of relate. Bottom line is, ust keep moving forward).
JulieHo - So nice to put a face to you name. Lovely!
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knowing they handnt done the oncotype test earlier was the only time I've lost it yet. Thinking you have plans and then having them messed with. Oh well this whole BC thing has messed with a lot of our plans. Just one more
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, Janet, thanks for looking out for me!,
Just a list of unfortunate events has left me feeling a depressed.
1. My lovely Cousin Horace having to be put to sleep, the sweetest cat
2. Absolutely staggeringly painful tonsillitis, viral thing, that has only just let up 1 week after DIEP onset. two lots of abx to see it off.
3. Yesterday, getting a call saying my 17 yr old had broken his arm/wrist as a result of skateboarding. Hospital, then surgery, once out and in recovery, calling for his mobile phone 15 minutes later! Felt depressing to know the drill of pre/post op surgery so well and explaining it to him.
4. Seeing my ex - the kid's dad first time in five years at the hospital last night and realising I still wanted to punch his lights out for all he did/didn't do around me and the kids.
5. Seeing him and thinking of his 'shiny' girlfriend, whilst I stood there with thin hair, a bit overweight, a recon that has a way to go before I can look at it and think 'wow', one larger breast. I am still having to wear scarves to cover the discrepancy. felt him looking at my chest. Wanted to poke his eyes out at that point.
6. Meeting a pleasant online guy for real, flowers, romance promised, but just wanting to be at home with my books and Netflix. His enthusiasm matched only by my weariness. I have become a recluse! Using the cancer card to get out of meeting again!
But I am a little brighter this morning, I am seeing my GP Tuesday and will explain that I am still having more duvet days than is healthy.....
I am so glad I can come here and tell it like it is. I know it is a pity party!! But it is the best therapy! Peggysull (great advice, I know this works) Love you all.
Thank you.
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Wintersocks - That's a heavy list.
#1 (losing cousin Horace) alone is a great loss to you. Throw in the shitty ex and his wandering eyes wandering to your under-construction breast, and I'm sure that duvet was pretty tempting. Good for you for not poking him in the eye with a sharp stick. You're still a work in progress Winter - try not to forget that. The way you felt yesterday isn't that way that you'll feel next week or the week after that. Peggy wisely said that the person you are will emerge again. But for now maybe the person you are is happiest with netflix and a book. That's okay I think. Especially since you folks in the UK are in a the middle of a deep freeze (aka a typical winter day in Toronto).
Really glad to hear that you're feeling a bit brighter today and also that you're visiting your GP on Tuesday. Are you on any kind of antidepressants? I'm a huge believer in the benefits of exercise - lots or just a little - or even a quick walk around the block. But I'm also well aware that getting out the door is sometimes next to impossible. I guess I'm not making much of a point except to say that it's okay to escape from the world as long as it is temporary. Do you have any girlfriends close by that you can walk with?
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My friend recently lost her cat and couldn't eat or stop crying for 3 days, Yes, a very long list. Be good to yourself!
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Winter, and anyone else with depression , you are not alone. I still fall into that pit as well. Losing beloved kitty is awful. So is the rest of your list. Hugs. I hope something positive happens soon.
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My daughter in law is a psychiatrist and prescribes light boxes. She says they really help. I know I immediately feel better when I go outside, especially if it's sunny. She said they sold them at Costco. I think it might help.
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