Calling all TNs
Comments
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Way to go, Heather! That sounds very positive - does that mean you are going to have to choose between 2 job offers? It never rains but it pours! Congrats.
riley702 - my Mom had BC 12 years ago (she was 80) and I went with her to her treatments (5 days a week for 5 days) - both of us were exhausted from it. But, the bad part was, we weren't moisturizing as she went through it and, after all the treatments were done, she got a burn like she had been in a fire. I used to put cold compresses on her and after I was done, I'd leave the room and have a good cry - it just looked so bloody painful. So, ladies, be sure to moisturize right from the start.
onvacation - good luck for next week (my treatment is on Tuesday as well) and hope your dad will be out of ICU and recovering nicely.
Lovely - what a shame that he made you feel that bad - I love Heather's suggestion about having her call him!
Doreen
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What wonderful encouraging posts to wake up to... thanks so much. Yes, I am glad to have found you to be able to share these feelings. I know that I must try not to think about be TN - my cancer will not define me.
Soon as I get my date for rads my new mantra will be "I must moisturize... I must moisturize" - great advice.
onvacation - hope your Dad is OK and your treatment goes well.
Cocker.... I've only been here a couple of days and already love your humour... thanks for making me smile and laugh. Yeah BC is serious business.... but we have enough seriousness in our lives eh? We deserve to laugh !
lovely - there is not a human being on earth who should make you feel that way. Especially with what you are going through. I hope you find a compassionate caring Doc. Is there anyone/organization you can let know about the unfeeling pig you had the misfortune to meet? Seems unfair his behaviour can go unpunished and he can move onto making another person feel that way.
mccrimmon.... great news on the job front - fingers crossed for you.
riley - thanks for letting me know you felt the same as me. I sometimes sit and wonder "am I the only one who feels this way". Thats why I'm happy to have found you ladies.... I know I am not the only one and if I am, that's OK too.... you will help me through it and vice versa !
I am meeting some friends for lunch and a walk along the lakeshore today. I have promised myself to eat cake first.... a nice big gooey chocolate slice.... then maybe I will dust off my wii for yoga.... and if it dare tell me I am fat it will be touch kicked into the nearest bin
Hope you are all having a wonderful day.
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Dam, this thread is busy, lol. Took me an hour to catch up, and it's only been 2 days.
Tazzy, welcome to the group.
Minxie - glad to hear everything went well.
Lovely - new doctor - new biopsy. Also, it's been years since they first tested my nodules but back then they did a radioactive scan that told wether the nodes were "hot" or "cold". (I forget which was good). They could tell from how they took up the dye whether they were cancerous. Don't know if they do it anymore because they jumped right to biopsy this time. Don't jump to surgery, I've had nodules for 30+ years.
Luckily I have some chocolate cake from a friend or you guys would be killing me!
Cocker, I always has a cheering squad when I walk. My thighs slap together and clap for me the whole way!
Rsinorlando - of course I will always respect everyone's decisions, but I'd like to to hopefully just say a little to make you consider the possibility of chemo.
I see you are Stage I, which hopefully gives you the chance to stop it dead in it's tracks. I also saw a friend go thru BC, but I made different decisions after I saw what happened to her. (don't know if she was TN) She chose lumpectomy and radiation, agains't her doctor's advice. Two years later her cancer was metastizesd. She decided to have chemo then, but the BC had already attacked her heart, brain, lungs and God knows what else. I actually think her doctor's were absolutely wrong to suggest chemo at that point, here body was far to compromised to survive it. They should have been honest with her, because if she had understood what was going to happen, I think she would have choosen to go home and enjoy what time she had left. She had two treatments, and died shortly after.
Now I know this doesn't sound at all like an arguement for chemo, but I learned from what she went thru. One of her regrets at the end, was that she hadn't done chemo when she got diagnosed. When I got got diagnosed, I realized that, "what will be, will be", but I didn't want to live with any regrets and what-if's. I chose to hit it with everything they had. I thought of my friend often when I went through chemo.
I wanted to tell you that chemo is different for everyone, but I went thru it with minimal problems. Yes I was a little tired, but I never had nausea or vomiting (they were really proactive about managing it). I did end up with neuropathy in my feet, but it is liveable, and getting better over time. I lost my hair and toenails, but it all grows back in time.
Thank you RS, for your patience in listening to this. I just wanted to present the other side. Whatever you chose, is the right decision, This group is about support,
Tazzy and a few others mentioned how the worry about BC is in their thoughts constantly. I worry a lot, but BC, is actually at the bottom of the list. I save my worry for the things I have to get done right now (the list is long, lol). Those things I can do something about. I'm very much an optimist, but I'm also a fatalist. I've done everything recommended to fight the beast, and now it's in God's hands (that refers to whomever you may believe in, or fate). I have no control, so worrying about it would be a waste of my energy. I have choosen to use my worry on things I can control and change. If I spend my time worrying about BC, I'm letting it rob me of a day of joy I have in my hand today! Thank you ladies, I'll climb off the soapbox now, lol
Have a wonderful weekend ladies!0 -
Heather - what good news! I hope you get a great offer. That butter cake, is sounding pretty good. I'm a trained Chef, not a great baker, if I were, I'd be as big as a house!
Right now I wish I had a loaf of sourdough Rosemary bread with Irish butter. As I live in the middle of no where, it would require a 2 hour trip to the "good" market.
Off to eat a freaking apple...
PS - no one has seen the wii, since the flood!0 -
Oh roll on lunch time... all this talk of food ! The weather is so beautiful here today I may just have a large scoop of ice cream with that choc cake !! And OBXK the sourdough rosemary bread with a great big dob of butter - OMG salivating just thinking about it!! Reckon I've put on 10pound just talking about this - ha ha!!
Kathy - thanks for the welcome. I have the dreaded tingling in my hands and feet also (on taxotere #2 or 4).... makes for an interesting 'walk' sometimes..... feel as though I should open a new club 'The Ministry of Silly Walks'.
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Tazzy, did they tell you to take B vitamins? They had me take a healthy dose of B12 and B6. Supposed to help nerve damage. Don't know if it worked, because by the end of Taxol, my feet felt like I was walking on glass, but I figure it didn't hurt and maybe it would have been worse if I didn't take the vitamins. It's faded to numbness in both feet, which doesn't particularly bother me, because I've had trouble with numbness off and on from my back injury for years. I did go back on Gabapentin (Neurontin), and some people are on Lyrica to help with the neuropathy.
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No they didn't? Hmmm... I will check with my MO on Wednesday when I see her. Like you said, cant hurt us anyway so why not. Nice to hear it eventually fades to numbness.... but I will deifnitely check out the B vitamins.
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Kathrynn, you are so right about not letting BC rob us of a day of joy today. Intellectually I know that, but I am not always quite up to it emotionally. Still, I found my anxiety was the highest about 12-18 months following treatment when little symptoms would pop up and I'd think the worst. Things have been better lately, meaning I can go days without thinking about it. Also, I have made a point of keeping vigorous activity and a low-fat diet part of my everyday life, which we know reduces rates of recurrence for TNs. Those are my ongoing "meds."
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Tazzy -when I told my MO that I had numbness in my toes he told me to take B complex with C and I started taking that along with Glutamine and it has realy helped. You might ask!
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Kathrynn - I really did laugh out loud at the Thigh Slapping comment. Thanks, needed that today!
Tazzy, I took B6 with Glutamine during treatment, bought a huge bottle and just finished it up about a week ago. The only numbness I have really is my port side big toe, I suppose it will get better gradually. Also my aunt, an occupational therapist also suggested those diabetic socks and massage. I try to massage my feet every morning as part of my daily routine.
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Good Morning Ladies. Hope you all slept well. I wish I could keep up with all the time zones, you are probably just going to bed so in that case hope you sleep well.
Onvacation - That must be so tough for you and your family with you in treatment and your dad in ICU. Why do these things keep testing us. Thinking of you and hoping all goes well.
Lovely - I am no doctor, although I would probably make a better one than the one you had, but I agree with Heather. I just don't think this is BC. You would think the tests could be a bit more conclusive than they have been. Just don't give up until you get to the bottom of it.
Heather - we also use sea salt. I don't think I use excessive salt normally but it's the only way to taste food at the moment. I have had a continually blocked nose, with sneezing all the time right from the start of the first chemo. Doesn't make for happy eating really.
The cake your hubby makes sounds wicked, and I'm all for wicked!! I just love messy and delicious.
Great about your job interviews. Told you it's only takes one to think 'she's awesome' but in this case two have. Wages are of course at the top of the list but I also think job satisfaction is too. If you have to go, and I do, it's good to be happy in your work. Would be nice to think you got both jobs and could choose the right one for you. I'm not sure what work you do can you enlighten me.
Dormac - my God I think I have it bad but that would have been terrible for your mum (5 days a week, for five days). I can hardly make it through weekly most of the time. I would have done exactly the same, left the room and had a good cry. Must have been heartbreaking for you.
Tazzy - I just love looking at the pictures of the girls faces in their pics on here, tells me so much. They are all so wonderfully kind and expressive and so is yours. You have such a happy face. You make me want to smile with you. So I'll take, OBXK's lovely hair, Heathers awesome face, your smile, Titans exercise regime and slimness, Inmates never failing courage, Lovely's never give up attitude and all the other ladies kindness and wisdom and for once I will be perfect. (Would be about the only time I was!!). I believe in saying what you feel, not just thinking things, cause I may never get another chance.
And yes, we will help you through this as you will us. I think all of us deep down have so many fears about every little pain or symptom but we have no option but to keep going and plodding on.
Kathrynn - you made me laugh out loud about your clapping thighs. Made my day. That's just about the only clapping I will get.
OBXK - Just love the idea of you being a trained Chef, wow. Sourdough, Rosemary bread and Irish butter, no the freaking apple just don't cut it.
I suppose Titan is out friggin exercising cause she's not on here yet. Better go dust off my sneakers and get out there abd make an effort.
I told my husband just now I am going on a low fat diet. He laughed till he cried and then said he was cooking a roast for dinner with crispy, crunchy baked tatties, so I might wait until tomorrow.
Onwards and upwards time for exercise before those tatties. Have a great day ladies. Keep laughing until you can't stop its the best cure for everything even BC. Annie.
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Stopping by to say hi to all you wonderfull ladies! I will catch up on reading all the posts later, but I hope everyone is doing ok or better!
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Lovelyface, let Heather at your doctor, or let her dog at 'em! Just look at that dog's expression! LOL.
DorMac, I did 33 txs at 5 times a week. I was pretty burnt at the end; even doing the lotions from the start. I went to the drug store and found these burn pads that are called "hydrogel" or something like that. The nonstick part against your skin is a cool gel that pulls the heat out for awhile. Would greatly recommend them for those who need them!
Tazzy, that's what I found the most helpful through the whole thing - the ladies here telling us what they did, what to expect, how to make it easier, and that no matter what you're thinking, you aren't the only one! It helps immensely to talk to those who know what you mean in a way others just can't understand, because they haven't been through it. It was such a relief to know I was understood and immediately accepted.
ETA: bak! Good to see you. You always make me smile.
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egads! I can't keep up with you guys....I read over the posts and laugh and cry and get pissed off (at Lovelyface's drs) not you all...and realize that I'm starving for some roast and potatoes!
The weird thing is...just now..I'm able to eat things that I ate "back then"....I used to make these awesome shredded chicken sandwiches...with chicken broth and stuffing and cream of chicken soup...haven't had it for awhile because it brought back bad memories but for some reason I'm craving it now...with cheese potatoes....do you guys make those..with hash browns, sour cream, cheddar cheese, cream of chicken soup and a whole freaking stick of butter? They are awesome...think of all that fat and calories..but oh my...comfort food is what it is.
Chemo made me eat weird stuff...KFC chicken....I can't even stomach it now...
Have a great rest of the weekend everyone...and for those of you that don't get a holiday on Monday..well...have fun at work...hee hee
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Teka...mammo anxiety..I hear you there....its awful I wish there was someway that we could have the darn things done...like they would just call at some random date and say..ok...come have your mammo now...no time to worry...
Mammo anxiety totally screwed up my weekend in early May...I was physically shaking..couldn't sleep..kept imagining that they would do it then whisk me into an ultrasound and then to the BS...then when it comes back ok...it's like what was I freaking out so much for
Cocker...I love the fact that you make us laugh so much on here....makes my day..and good for you for walking...I told my bs that I had heard that exercise for tn's reduces our reocurrence risk up to 40% and though he said that it may not be that much..(blah)...it does help.... I wish you all could be with me when I run a 5K next month...I want to win dang it! maybe if I take you all with me in my head I can do it....of course if I imagine the old thighs clapping for me I may not be able to run cause I will be laughing too much
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Luah, your post made me really chuckle....because I just got home after having a juicy prime rib, lol
Riley - that tip about the hydrogel pads was great! Wish I knew about them when I was burned so bad.
I have a tip, but I went "off the reservation" as they say to do it. When they were doing whole breast rads, the underside of my breast was so raw and painful I couldn't sleep. I asked my rad onc. If she could prescribe Lidocaine 5% gel. She blew me off and told me she didn't know what was in it, so I handed her the ingredient list the pharmacist printed out for me. Then she said she couldn't give it because there was "acid" in the inactive ingredients. (if you had paid attention in pharmacology or taken 2 minutes to call the pharmacy, you would have remembered that "acid" is used in topical medications to buffer them to the normal ph of skin!!!). She told me to just do soaks with normal saline. (works for about 60 seconds when it's cold). What really put me over the edge was when she told me, "they see this all the time and know what's best". Well I will admit to being a tad feisty, so I asked her "when exactly did you have YOUR breast fried like a Thanksgiving turkey, because you may see it all the time, but you have absolutely no experience feeling it"!!!!
So back to the pharmacy I went and bought Bactine (no sting) Pain Relieving Cleansing Spray which is 2.5% lidocaine and sprayed my breast with it twice to double the dose, and dried it with a hair dryer set on cool .(pharmacist checked the ingredients to make sure there were no heavy metals in it).
Needless to say, I'm sure I'm not on her favorite patient list, but I did feel some redemption at my last visit. I was seen by a different doctor, and when she saw the burn scar, she said "wow, you are extremely burned, what did they prescribe for you to control the pain"? I think maybe I should change to her instead, lol0 -
Dam* chemo brain, I came here to ask a question, lol.
Paintingmyway, are you at MGH or DF? The reason I'm asking is I'm having my first post-treatment mammo in July at DF, and as far as I know, all I'm getting is a regular mammo. (results in 2 hrs, so I assume it's a regular mammo). Also, the only follow-up testing I'm getting is an annual mammo.
How can supposed "standards of care" be so different for the same disease?0 -
Kathyrnn - I am begining to worry about your doctors there what with the one lovelyface has and your radiation oncologist. Can they just say to you what they want even though you are paying them?? This shouldn't be as hard, you have enough to be going on with.
Titan - I agree with you on the random mammo's BUT they also give you the results then and there save you stressing over them as well. Wouldn't that be good.
My sense of humour has always been a bit wacky. I like to know I am cheering up someones day if I can and its only at my expense never theirs but it can also mean that I doubt my ability to beat this thing so I turn it into humour. TN, 27mm tumour in breast, 3mm tumour outside the nodes, good possibility of BRAC1 & 2 and 65 years of age. Not a lot going for me really is there and bugger me if my eyelashes are going as well. Well that takes the cake cause I really didn't want to lose my eyelashes lol. On well, once again onwards and upwards.
We will all be there with you when you do your 5km run, all clapping our thighs lol. Do you think they would televise it just for me in NZ?.
My 14 year old granddaughter told me tonight that 'lol is not cool any more Nana' but apparently WTF is still in. Oh well as long as the main one is thats ok so my roast beef and crispy tatties were well worth waiting for and I decided to say WTF re the diet and enjoy it while I can.
Have a good evening/day ladies and keep smiling, better than any face lift. Annie
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Cocker, your posts alway make me laugh, but now I know exactly why. A rather demented sense of humor runs deep in my family tree. Let's cross our fingers and hope that there's some truth in the expression, "laughter is the best medicine"
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Good Morning, Gals. This thread sure does move fast. I am doing my best to keep up.
Today is my 3 year cancerversary. Not celebrating it. But giving thanks to God and my family and friends for standing by me. Am grateful for everyday.
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My gosh you ladies have been busy on here !
So after meeting my Gf's for a lovely walk along the lakeshore yesterday afternoon, we stopped for lunch and when I ordered my chocolate cake and ice cream first they looked at me as though I had grown 2 heads. I explained our conversations to them and said "live on the edge girls, live on the edge"... so there we were - 3 women in our 50's giggling like schoolgirls eating chocolate cake and ice cream before lunch - laughter really is the best medicine.
Now craving crispy roasted tatties. happy that the batteries in the Wii have died
Currently take Vit D & C as part of a clinical trial for the drug denosumab... it is a double blinded trial so don't know if I am receiving the drug or placebo. They are trialing it to see if it can reduce the risk of cancer recurring in our bones at a later stage. Don't see how taking Vit B complex could hurt.
Kathy.. I will not allow bc to rob me of a beautiful day - thank you for those words. Seeing them written helped me to remember that.
Heather. I will try the morning massage on the feet.
Thanks for sharing all what you have done to try and ease the rad effects. I will make sure I go armed with all this info when I see my RO on June 13.
Titan... good luck on the run - as a non-runner (more of a walker) I admire anyone who runs. And the visual I had of all of us on the sidelines clapping you on with our thighs.... Dear oh dear !!
Cocker - what can I say. There isn't one post of yours that doesn't make me lol in some way. Ooops.... WTF I forgot that lol wasn't cool anymore.
And yes, with all the different time zones we are in, whether you are just getting up, going to bed, in the
middle of your day make sure it is a happy one.Michele
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Hi Navy - three years is awesome even if you are not celebrating.
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I agree gillyone... 3 years, great milestone. Congrats to you and your family and friends.
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Hi ladies...this thread's moving so fast I can't keep up!
Titan, I know the hashbrown recipe you're talking about. Mmm, how I love those potatoes. Maybe I'll make them this week.
Cocker, your sense of humour is so good. I love to read your posts. Now it makes sense why my daughter's been writing "WTF" on Facebook so much. Poor thing, I told her she can't write LMAO anymore and that she needs to write "LMO" (laugh my off).
I'll be putting in the plant in LauraJane's memory in the next couple of days. I'm not much of a gardener so I asked a gardening expert for advice and he recommended Sedum Autumn Bliss because it's a hardy plant that will thrive here in Canada and is one that would also grow well in Indiana, where LJ lived.
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Hi Titan, thank you for the kind words. I just read your message that you wrote last june. Sorry for the late reply. I've been busy recovering but I'm starting to feel better. I've just noticed my hand swelling and am pretty sure its LE. Not sure what to do.
I hope you're doing well. Let us know how everything is with you.
Take care of yourself.
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Hi everyone...not much time before we go to dinner. But with this link you can read about our first day in Paris (yesterday). I cannot believe that it's 9 p.m. and still daylight. The sun sets very late in Paris this time of year....very nice. And the weather is spectacular - 80 and sunny.
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Paris in Springtime... I am envious. Having lived in London all my life until 2000 before emigrating to Canada, BC I spent many long weekends Paris (fortunate that flights from London to Paris and/or Europe are incredibly cheap). It sure is a beautiful city. Thank you for the link LuvRving sounds like you are having an absolutely amazing time... and how could you not. Paris in the evening is pretty spectacular too. Enjoy your time there and look forward to more updates.
Weather not too shabby here eithere - 25 and sunny also.
Hope that everyone is having a wonderful day.
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Bak: Glad you popped in to say hi.
Navy: Three years! That is a big milestone. Congrats.
I'm missing Heidi, she hasn't been on in a while. Hope all is well.
Hope you U.S. ladies are enjoying the long weekend.
Best thing that happened to me today: Breakfast at a neighbourhood diner with my two grown sons and DH (his birthday today).
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Good Morning Ladies. Just read LuvRVing's post and I too am envious. Sounds wonderful. I could just sit at the cafe now and have a capachino. Holiday of a lifetime. I hope she has a fabulous time.
Well, I must say our weather is pretty shabby. Not so cold but its raining. Might even forgo my walk cause me feet are puffy and tight and they don't like rain at the best of times.
Sugar77 - that is so lovely of you putting in the plant in, in memory of the girls. What colour is it?.
Titan - getting my own back now. We have a long weekend next weekend. So a holiday for us too yay, but could do with your weather to go with it.
Gillyone - three years congratulations but how come you aren't cellibrating, three years is a long time.
Well better get back to typing. Have a great day ladies. Annie
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Cocker - I was responding to NavyMom's post about 3 years. (Though mine is coming up too).
Luah - i have been thinking about Heidi. I hope she's just taking a break.
Tazzy - I'm a Brit.
LuvRV - we are all jealous. Have a wonderful time.
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