Calling all TNs
Comments
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I'm happy to be marking an anniversary today! Three years ago today, I had my first surgery. All that we know of was removed then, so I've designated this my milestone date. There were times I never thought I'd get to 3 years, but so far so good. As always, fingers crossed for the future.
Throughout, you ladies have been my rock and my inspiration. Thank you.
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LUAH - Woo Hoo! Great news! Wishing you many happy returns of the day.
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HUGS to all!!!
OBXK-wishing you well with surgery.
Titan you seem like a lot of fun, it really lightens the mood here.
Oh well it is PINKTOBER!!! Everyone means well but enough already. I am officially joining the F*CK AWARENESS FIND A CURE GROUP!
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Luah - great milestone!
Fighter - I'm with you. I am sick of Pinktober. I even wrote a short article about it that was printed in our local newspaper.
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Cocker~ I'm not sure about the CA 153, but a CA 125 that is 5 is great! I get those once a yr. since ovarian cancer runs in my family, and mine always range from 10-16. I believe anything over 35 is when they look a little further, as that is considered high.
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Luah That is wonderful news!! It gives hope to me as I am still in the treatment phase.
Fighter, I'm with you! I used to love October.... I think most are aware! Prevention and cures are what we need!!
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Happy 3 years Luah... celebrate
Hugs to all xx
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Hi, It seems to me that in the UK we don't get the follow up that you do in the US/Canada when you have finished treatment.
I was dx Dec 08 with grade 3. Had chemo x 8 and rad. Bi lat and no rebuild. No nodes affected. Since then I have been seen by my onc but all I get is a quick prod and asked how I feel. (which is irrelevant as I felt 100% fit until they told me I had BC!) Is it correct that blood tests won't show anything? And as a TNeg, where do they start looking for reoccurance any way, when it can come back in your chest, brain, spine, wherever it fancies! I'd appreciate some help in what I can say to my doctors as not getting any scans or blood tests is driving me crazy with worry. I like to be on top of things and feel as though this is something that's being left un checked and that when anything does get noticed it will be too late. Am I being silly?
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Luah-congrats on the 3 years, I can not wait to be able to look back on this because it sure does feel like I will never be done! and how is your hair now?
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browerl- I am 2 years out and my hair is about 2 inches below my shoulders!! Hang in there, it comes back pretty quickly!
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Wiggy - No, you are not being silly! I'm one who gets lots of scans and testing, but I still feel vulnerable and have doubts that doctors don't tell me everything. I guess worry is one of the gifts that comes with this crappy disease. Welcome to this family of sisters who have "been there,done that." You'll find lots of support and helpful hints here. Someone will be along and give you a better answer to your question.
Cocker - I want that fuzzy ball of cuteness. Glad you are able to get back to typing. Keeping busy seems to help those worries.
Karen - I've been following your new dx and wish you all the best care that can be found. But, wow! you run circles around anybody I know. All that entertaining has got to be tiring. Best wishes to you, too, as you get poked, prodded, and worse.
Dawn - Still holding you close while you deal with your crappy dx.
Luah - Congratulations. May we all be so lucky.
Everyone else - Good wishes to you. I read all posts but I've been a laggard in responding.
Jan
Bak - Hope your test went well tody. I suspect I'm due for another one and I know how uncomfortable (ha) the procedure is.
Luv - I hope you are enjoying a calm, relaxing time on the beautiful island.
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Wiggy - most doctors, do not do scans, if you do not have symptoms. If you ever experience pain for two weeks, you should call your onco. Having a metabolic blood panel and CBC w/ diff every six months, is also a way to make sure everything is in order. For example a high blood calcium serum - could suggest bone mets, elevated liver enzymes, could mean it has spread to liver. But, if you are feeling good - enjoy it and try not to worry.
Jan - thanks for the good wishes.
I'm packing for my trip to VA. I have an old track suit I wear to the hospital, that damn betadine always manages to stain my clothes.
I'll keep you posted on my adventure!0 -
A moving couch and a soft bottom to keep me on here
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IRELAND - HOME SWEET HOME......... The only place where........ • When you were young, you went to bed when Glenroe was over, • If you die from alcohol poisoning, you're considered a lightweight, • 'Feck off' means 'Are you serious?', ... ... • The person that you insult most is probably your best friend, • Saying 'I will yea' means that you definitely won't, • "F*ck it, its grand' means that you
couldn't be bother finish it properly, • 'He's fond of a drink' means he suffers from severe life-threatening alcoholism, • Saying you're going for a drink means you might not be seen again for 3 days, • Crisps are called 'Taytos' and fizzy drinks are called 'minerals', • 'For the craic' is the best reason for doing anything, • The best cure for a hangover is more drink, • Nobody can go a day without saying 'Jaysus', • 'Meeting' has a double meaning, • Tea is the solution to every problem, • And water is the solution to every GAA injury, • "I got stuck behind a tractor' is a perfectly valid reason for being late, • We eat Tayto sambos for lunch, and ham sandwiches on the way to Croke Park, • You can insert the name of a gardening tool into any sentence and it still makes sense, e.g. 'I had a rake of drink last night' or "I'll be out in a minute, I'm just shovelling down the dinner', • GAA is considered religion, • Its perfectly acceptable to call your mother 'mammy' even though you are a fully grown adult, • Saying 'Now we're sucking diesel' means that you are happy with the outcome of the situation, • Drinking 'tae' is everyone's favourite past time, • You're scared of the wooden spoon, • The word 'like' goes in every sentence, • You can say "Any craic' to a garda and you won't get arrested, • 'The dogs' bollocks' means something brilliant...anymore???0 -
Bernie--that's great. I went out with an Irish man for many years--spent alot of time in Roscommon (mostly in the pub!). All so true!
Congratulations, Luah.
Wiggy--I'm in the UK too and will be monitored closely after treatment. I'll have exams every three months for the first two years and then six monthly thereafter. I asked my oncologist about scans and blood markers. He said they don't do routine scans unless a patient absolutely insists on them because there's alot of potentially unnecessary exposure to radiation, it causes enormous amounts of stress and anxiety and the evidence shows that frequent scanning doesn't have an impact on outcomes. Regarding the blood markers, he told me that they are more reliable for tracking progression if the cancer comes back than they are for predicting a reoccurrence. He told me to follow the two week rule. If something's bothering you for two weeks or more, get it checked.
I had my first of three Taxotere last Wednesday and am finally emerging from the fog. This is so different from the FEC. A sneaky one...fine until two days after and then wham! Felt like I'd been hit by a bus. Better now though, six days out. I'm far too busy to be dealing with this "being ill" crap!
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Brower: Hair started to grow while I was on taxol, came in grey and fuzzy. But within 6 months I had a pretty cute pixie. Before BC I had long thick hair; it is still quite thick but I keep it a shorter bob length now... much more convenient!
English: It's true each of the chemo regimens seems to have its own pattern and schedule of SEs. Now you know what to expect when, I'm sure the second one will go better. My sister was on taxotere and found the first round miserable. But the others were more manageable as she knew to take it easier on her body first few days.
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Thanks, Luah. That's comforting about your sister. I'm glad I didn't have the Taxotere first. I'm telling myself that no matter how bad the next two are, I'm coming in to the home straight! That makes it feel more manageable.
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HAVING A BAD DAY.......... READ THIS......A father passing by his son's bedroom, was astonished
to see the bed
was nicely made, and everything was picked up. Then, he saw an
envelope, propped up prominently on the pillow. It was addressed,
'Dad.'With the worst premonition, he opened the envelope and, with
trembling hands, read the letter..."Dear, Dad. It is with great regret and sorrow that I'm writing you.
I had to elope with my new girlfriend, because I wanted to avoid scene
with Mum and you. I've been finding real passion with Stacy, and she
is so nice, but I knew you would not approve of her, because of all
her piercings, tattoos, her tight Motorcycle clothes, and because she
is so much older than I am.But it's not only the passion, Dad. She's pregnant. Stacy
said that we will be very happy. She owns a trailer in the woods, and
has a stack of firewood for the whole winter. We share a dream
of having many more children.Stacy has opened my eyes to the fact that marijuana doesn't
really hurt anyone. We'll be growing it for ourselves, and trading it
with the other people in the commune for all the cocaine and
ecstasy we want.In the meantime, we'll pray that science will find a cure for
AIDS, so Stacy can get better. She sure deserves it!Don't worry Dad, I'm 15, and I know how to take care of myself.
Someday, I'm sure we'll be back to visit, so you can get to know
your many grandchildren.Love, your son, Joshua
PS. Dad, none of the above is true. I'm over at Jason's house. I just
wanted to remind you that there are worse things in life than the
school report that's on the kitchen table.0 -
Hot Damn, Bernie, That was a good one. Considering that I been through life with a teenage boy....who didn't always do so good in school. That last line made me laugh out loud. Thanks
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That was funny Bernie!!!!
I am still in the hospital., but they will let me go soon. Everything looks good so far, but because of my brca 1 status they are going over the ovaries and tubes to make sure there is nothing there. my left ovary was attached to my bowel, so I guess it was a bit tricky to detached, Doc said it looked like I had endemetriosis, which is probably why I had heavy bleeding for all those years. So happy to get everything out. I have a bit of pain, but it seems to be getting better by the minute. They had a bit of a hard time waking me up, freaked my husband out! I think the anesthesia guy gave me extra because of the time I woke up in the middle of surgery!
I hope everyone is well. I will check back later to read more posts!
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Ok ladies I am a little confused. Earlier this month I scheduled my total bmx (both sides) with reconstruction. My first question was how long will I be out of work. The scheduling lady said 6-8 weeks. Well today I went and picked up my fmla papers from the bs office and much to my surprise they have me returning in 4 weeks. Surgery is Nov. 19 return to work on Dec. 17th, that is just 27 days. I work will severely handicap middle school children (big kids not babies). My job dose not offer any light duty. I have to get these kids out of their wheelchairs into standers and onto a changing table. Unfortunately, I do not have a desk job. How am I going to be able to lift them in 27 days!!!!!!!! I called the bs office as soon as I noticed and the snippy little bitty on the phone just laught and said "oh no you do not get 6-8 weeks for a bmx you only get 3-4" If any one else had this surgery, how long were you out?
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Browerl, first of all, the snippy little bitty on the phone does not determine how long you are or are not off work -- each situation is different. That said, I would insist on talking to the BS and explain, probably again, your work situation. I am thinking your leave will be extended. When I have had surgery (not related to BC), my docs have always worked with me and the environment at work.
One more suggestion, ask to go back 1/2 days for at least two weeks to ease back into work -- after your 6-8 weeks off. This was actually told to me by my ob-gyn after a C-section with a broken leg. O_o
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If you are gettin recon at the same time I thought the recovery was a little longer??? Not sure as I did not do it together. For bmx the recovery time was quick. I just could not lift anything heavy for a while ( which sounds like you may have to do).
Just back from the girl's trip to Mexico..was great now I have to get ready to leave for NOLA in 10 days for my recon surgery. probably gonna drive as my arm and flying on a plane do not get along. Also not sure if I want to fly with tubes sticking out of me! It takes a bout 12 hrs to get there by car but flying would take about 8 hours but done in one day...will take 2 days to get home for sure. Tough call!!
Missed you all and will catch up when I can on you all. Hang tough my sisters and let's keep out chins up!
Maggie
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I would think that is a bit soon brower. I was out longer but I had complications, I had an infection and my incision wouldn't close. For me even doing just the bmx the recovery was not quick, and I was quite uncomfortable for a long time, actually still am. Not trying to scare you, it's just that everyone is different. I am now worried about only having 2 weeks after my hysterectomy, feeling a bit sore and my job is physical also.
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BAK - here in New Zealand we are not allowed to go back to work until the sixth week after a hysterectomy and even then cannot lift, vaccum etc. Your time off doesn't seem long at all especially as your job is a hard physical one. I agree with Pinky ask your surgeon about time off and after that go back part time if you can until you feel stronger.
Can you tell me if you had pain with the gas from the oophorectomy and was there any nausea. Glad you finally came around from the anaesthetic!!
Bernie -great joke.
Mags - glad you had a great time in Mexico and wishing you well for your recon.
Taz - how is the radiation going so far.
Saw my BS yesterday. Got to have a mammogram on the remaining breast (not looking forward to that) and an ultrasound to check out ovaries and the liver. Also got to have my port out, not looking forward to that either. I am having a local anaesthetic for it so hopefully it won't be too bad.
I'm finally going back into work on the 5th November so my chloe will be creating havoc while I'm gone no doubt especially with the old fellar not here either during the day.
Have a great day ladies. Thinking of everyone especially those having active treatment and those who will be stressed and worried. Big hugs. Annie
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Bak - same here and no driving for the six weeks either.
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Haven't posted in a few days, but I do check in a read up. Just wanted to let you all know I think of each of you everyday. I am doing well. Was having alot of trouble with shortness of breath and coughing. But finally after my 2nd round of meds. I am doing better. Thank God, cause my mind wanders...
((hugs)) to all and I hope each of you are enjoying life the best you can...
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Annie: Rads so far all OK. Skin holding up. #9 today and meeting with RO today, just our weekly meet.
Hoping all are having a good day.
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Brower, Do you work for a school district? If so is there a sick leave bank? That's another way to get more time if needed.
Tazzy today is # 11 rad for me so looks like we're on the same schedule and hopefully looking down the home stretch!!
Be well everyone ....
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bowerl: First of all, under FMLA you have 12 weeks of job protection in a rolling calendar year under federal law. ( For example, my surgery was in Feb. Between the surgery and chemo I used my 12 weeks by July 23rd. I am not eligible for FMLA job protection until Feb. 2013.) It is entirely up to you and our surgeon when you go back to work. The fact that your job requires lifting will lengthen your recovery time. DO NOT let anyone tell you otherwise. These people in human resources that push paper all day long have no idea what we are going through and have no sensitivity. (I'm having a flash back to conversations with my insensitive HR person.) Good luck. Remember, follow your doctor's instructions and make sure he fully understands your job duties.
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