please help

sueps

Please read the oterh page sisters...my quezzy is important ....xxxx

AnneW

Dearest Sue,

I wish I could answer your question, but I'm a chemo-virgin. But, from all I've reasd and know, what your'e going through sounds fairly common post-chemo. Especially the fatigue and moods. I really don't know about the joint pain. Do you have meds that can help? And can you put a call in to your onc nurse to find out if it's typical, and if so, what to do? Any history of fibromyalgia or rheumatoid arthritis?

I'm so sorry you're hurting and irritable. Pain makes it all worse. Depression makes pain worse. Are you on an antidepressant??

Sigh. All I can do, Sue doll, is give you a big cyber-hug! I wish I could fix you and make it all better! Even Humpty Dumpty couldn't get that, though. So--take a hot bath with lots of bubbles and a glass of wine.

I hope this post-bootface monster just leaves you the hell alone.

Much love,

Anne

livesstrong

Sue - so sorry you are feeling that bad.  I did not have the pain you are having, but UB is still achy.  Are you on any med's? AI's?  Could be the cause.

sueps

Thankyou so much for the repy...AE.... I am so sad with pain I wish you were sat here with me...or slouched rather...I wanna slouch between you and my Ub .....

What are AI S..

I have taken strong pain killers ibrupfon I am on anti ds.... I am not depressed just freaked off...this is worse than chemo ...I am sure it is post chemo...I mean I had aggressive crap. and the steroids probably masked the effect and now I am left with this...FFS.... I cant even go upstairs to kiss my sons good nite...once I have collpased after work that is it....so soso sososososoooooooooooooooooooo D E F E A T E D !!!!!!

WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA NOT FUNNY THO LOL X X X X 

ANN much love to you ...thankyou xxxxx

sueps

AE ...I wish I lived near you xxx   I wish you could come round for a brew.

 I wish Ub would give me cuddle lol..... we are goin through so much....I would do anything to be closer to you  both xxx goin bed...have to be up in 5 freaking hours .... I am so heartbroken...I thought I had done really well....OBVIOUSLY NOT EH....I have no energy left to spar with the UGLY STINKIN ROTTEN MANGEY MINGY MOULDY FREAKY DICKFACED MONSTROUSITY OF A BOIL ......

sweet dreams darlin sisters ...ignore bootface over there in the corner snivelling piece of dirt !!!!!

TenderIsOurMight

Do you think you might be carrying an infection anywhere, Sue?

 

When I read your post, this possibility occurred, especially because your white count may still be low from the final chemotherapy six weeks ago, thus raising the risk of infection. Do you have any fever, rash or noticeable joint swelling, any cough, urine discomfort etc? It sounds like you may wish to see your Onky for a quick run through.

 

Can it be from chemotherapy? Well, the taxanes (paclitaxol and docetaxol) are pretty well known for causing aching of leg muscles and sometimes bone for quite a while after they are given. I had a bad reaction to them with achyness and muscle fatigue and muscle weakness. But sudden estrogen lowering due to cessation of ovary function, even transiently creating a "menopausal" like state may bring out joint stiffness and aching in joints in some from what I've read. It's like fast forwarding our aging process, added to by all the drugs given at the same time of the chemotherapy. So you might be still afflicted by side effects left over from those powerful drugs.

 

Here's a link to a fellow discussion forum on "can chemotherapy cause arthritis?". I took a quick peak and include it because it sounded so similar to your post:  http://www.dipex.org/community/topic.asp?TOPIC_ID=316 

 

Hope this clears up fast. I can't imagine you not working at a job you so clearly excel at and so enjoy!

 

Best to you Sue and all,

Tender 

livesstrong

Sue - are you on Tamoxifen or Armidex or anything like that?  The tamoxifen gave me terrible joint pain.  I felt like I was 100 years old.  I am now  on Armidex and it is better - still some bone pain, but not as bad.

sueps

Thx Tender....I will read your link.I t feels like bloomin arthiritis....I am wondering if I have shingles maybe ...I had epirub and cmf ...I just dont get it...my bones feel broken and my muscles ache.

AE...I is triple negative innit ...LOL......so I dont take anything now .... xxxxxx

GOd I am freaked off to say the freaking least!!!

I will read this link of lovely Tenders' and then go quacks on Tuesday see what they say ....I love you all xxx  my joints arre swollen too xxx

livesstrong

Hi Sue-

It's been a while since I have posted anything, but after Valerie read me your post, I felt compelled to write. I have been feeling the same way for the past 3 weeks. I ache all over and have absolutely no energy. I barely make it through the day.  I am extremely depressed...I think about dying constantly and have convinced myself that I will not be alive a year from now. I have never felt like this before. I have a difficult time concentrating on things...even Heineken doesn't cheer me up. Valerie and I want to plan a trip to East Africa...perhaps Kenya or Tanzania. We will have a layover in London...maybe you can meet us there and go with us. With some luck we'll both be eaten by freakin lions!  Take care of yourself.

Bill 

portiasproudmom

Oh my!  Please don't get eaten by the lions, UB!  I'm so sorry you and Sue are feeling so physically and emotionally wrecked (and dear Ulla too).  I've been feeling pretty achy still too, but I think my problem probably stems from the Tamoxifen.  Who knows though?  Chemo is hard on the body.  I've heard people say it took YEARS before they started feeling more like they did before bootface.  I'm just sick to death of having no energy or motivation.  It seems that I have to push myself to do ANYTHING.  It's really irritating. 

Sorry again, you guys.  I love ya both and hate hearing that you're so unhappy. 

Hugs,

Karen

Shirlann

Sue, honey, have you tried Aleve?  Or, its prescription name is Naproxin.  It is sometimes amazing.  Yes, I would expect you to be feeling better, but there is just no way to tell.  Each of our bodies are so different.  And you are tiny, and I am sure they did not even think of lowering your chemo dose, same one for you as the 300 pound gals.  I never understood that.  But on the bright side, I am CERTAIN every cancer cell has long ago died an agonizing death in your body, and that is even if there were any there.

But, are you screaming and yelling at the clinic?  Ask for some answers and insist on some help that will work.  Don't be a "good little Dorothy" and just suffer.  Get some help.  Remember, only the greasy wheel gets the grease.  HUH?  Didn't make much sense, but you know what I mean.  Tell them you are a single mum and need to work, and you are not recovering as well as you need to and what should you do?  Just pester them relentlessly.

I love you, little sweetie, Shirlann 

sueps

Heheheheh Ub you send me to bed with love in my heart. I too am emotionally like you ...I said to my o/h whats the point in losing weight if I am gonna DIE ...lol....ITS A BAD DO ALL ROUND....if its not one thing its t'other ...lol....

 I feel you ub...we are both in the same boat...lets keep bailing....we will get better in 12 months..

 I will speak soon here....have to get to bed....and yes maybe we should feed ourselves to the Lions lololol....AE can hold our clothes while we do ... I dont think lions eat cloths hahha

Sweet dreams Ub ...know that you are in my heart xxx and tell AE .... I want to be right there with her xxxx

portiasproudmom

Here's a picture of our house.  What do you all think?  The interior shot didn't turn out very well.  It was hard to keep the catalog open because it's so thick.  We're signing the contract tomorrow.  I get a stomach ache just thinking about it.

livesstrong

Hi Sue (again)-

I have just been informed by my wife that Africa is out. Instead, we're thinking about Amsterdam. Same deal...we'll stop in London, go to Amsterdam and drink Heinekens, get drunk and fall into a canal.  Think about it. Ladies, all of you are invited. Good airfares on KLM and Virgin Atlantic. My good friend Lou Reed loves Amsterdam...one of his favorite cities.

Bill 

sueps

Shirlann I love you mum...and I feel your love.....stupid pond....lol...I wish I lived right near you all ...or I could spend a couple of months there.....xxxxxxxxxxxx

I am glad I posted here...I am going to start ringing you all up ....its good to talk xxx

sweet dreams...much much mich love !!!

portiasproudmom

sueps

yes UB ..... i AM IN ON THAT...WE COULD GO TO THE RED LIGHT DISTRCT AND GET EATEN BY PROSTITUTES AFTER WE HAVE EATEN SOME SPACE CAKES lol

count me in!!!!! Amsterdam yey ...with all my sisters and my uncle xxxx

I have 4 hours before work...I really must go ...my hands ache typing xxx

portiasproudmom

Envision it without the daylight basement, in a country setting as opposed to the waterside setting they're showing it in.

Honest opinions, please.

Thanks!

Hugs,

Karen

portiasproudmom

Ack!!!  Eaten by prostitutes?  Not the way I want to die!  You two are so funny!  LOL!!!!!!!!!

livesstrong

Hi Karen-

Beautiful house!!!!! Lots of luck! I hope you like cleaning windows. Seriously, Valerie and I were extremely impressed. That house will be sensational no matter what the setting.

Bill

lvtwoqlt

Mel, the cookbook just went to the publisher, we expect to get the proof back in 4 weeks, and after we turn the proof back to them with the ok to print we should get them in 50 days so we are looking at getting the cook books back in time for the fall Bazaar in October. I will let everyone know when I have them and how much to send to me so I can mail them out to you.

I only have a minute to answer, I quickly read all the posts. This week the office is 'offically closed for vacation' but my boss has asked me to pop in for a couple of hours a day to enter the orders that are received via fax. I will get paid extra for this and since I live less than a mile from the office I am not burning that much liquid gold in the car coming to work for a couple of hours. so if I don't post much this week that is the reason, When I am at work I will be entering orders only, not waiting on the blooming phone to ring - it's unplugged!

Sheila

NancyD

Sue, I've noticed that what was mild arthritis before my treatments (and I mean very mild), has now become stronger. Mornings my feet were a little stiff, but once I got going I never had a problem. Now, mornings are very stiff, and if I do any extended activity (like long walks or heavy gardening), my legs ache (muscular) and my feet hurt. I'm hoping it doesn't get worse when cold weather sets in.

NancyD

Karen, That's a gorgeous house! I could see it in the mountains, too. And as Bill says, you gotta' love cleaning windows. LOL.

AnneW

What a house, Karen! So open and airy and light--it has a happy feel to it. Can't wait to see how you decorate all that open space. And those windows! My goodness! We just spent $250 on window cleaning. We have tons of windows, and they are very high, too (A-frame mountain home) so we splurge and let the pros clean them!

Sue, I'm wondering if your immune system is so whacked that you have something really funky going on. You ache in muscles and joints, PLUS your joints are swollen?? Make sure the quacky docs draw some blood for an arthritis panel/ lupus panel along with complete blood counts and ESR (also known as sed rate, which shows generalized inflammation.)

Increase the anti-depressant dose? Chronic (and acute) pain deplete the seratonin even more, so it may seem like the med's not working.

Were you on constant doses of steroids during treatment, or just when you had the chemo? Steroid withdrawl can mimic a lot of what you're going through, but it's been 6 weeks, so maybe that's not it. Your body ain't too happy right now, huh? I'm sorry you're suffering like this.

Time for me to leave this computer alone and go clean cupboards, so I can restock them. A big bunch of hubby's clan is coming in for the week. I know they'll be helpful once there's here, but in the meantime I must buy groceries, clean the house, wash the towels that have been in storage for ages...plus work, and get in my exercise (which I will NOT push to the side, like usual. This is for ME, dammit!) And, of course, hubby is out of town on business till the day his family starts arriving. Deep breath, Annie! I said I wouldn't get stressed, but I know I am a bit. Oh, well, to the kitchen I go!

Have a great day, y'all!

Anne

sueps

YOO HOO!!!!!!

karen do you want a lodger in your new house....it is really swanky ....or maybe I could be your live in housekeeper .... you are very lucky xxx

OK I have just got in from the quacks...I went today after work...

Apparently chemo affects the bone marrow and when the marrow is killed it causes pain in the long joints...hence my digits...oh my they are excrutiating!!! So I have to go for a blood test...dont know when I will fit that in!!  He has given my some arthiritc meds and 2 other painkillers...he asked me to go on sick ...no way...so he told me to keep on top of the pain....he says he gets annoyed as they never tell people the true s/e to chemo....

The bone marrow may never regenerate ...or may take long term.....

Anyway .... I am well hacked off with it...

But still .... I have life xxx

Sheila you are sooooo funny .... I can imagine you whippin out the phone plug...lololol... kisses xxx

I love you all...please bear with me xxx

livesstrong

Sue - I am so glad you went to the doc.  Hopefully the meds will help.

 Back to work I go.......................waaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa

AE

Shirlann

Kare, OH MY GOD!!!  That house looks like Better Homes and Gardens, FRONT PAGE.  It is lovely, honey, and I would love it.  I know you will have so much fun and lovely memories with that gorgeous home.  I am a little jealous, but I will recover!  hahahaha

Sue, bug, now take the stuff, and keep on screaming.  They can and will help you, but only if you raise a royal runkus.  

I have been to Amsterdam twice, it is lovely.  A wonderful city.  Canals, Anne Frank's home, the Van Gogh Museum, and if we meet in April TULIPS, so large they come almost to your waist, with blooms 5 inches tall!  Unbelievable.. Of course, on one trip, my son and I went on to Tanzania, and I fell completely in love with Africa.  So wonderful, I would give anything to go back.  But it is so freakin' expensive.

AE, don't work so dang hard.  They will just expect you to always do this.  It is too much.  So just go home at the regular time like everybody else. 

Love you all so much, Shirlann 

geebung

I just wrote a post and pressed the wrong button and deleted everything. So annoying! Am rushing now. Love to all of you - especially those of you who are sad, in pain or just plain exhausted - Sue, UB, Ulla, Lisa... so sorry if I missed anyone. Love you all. Will come back later...

 Jane xoxoxox

NancyD

Ladies, I have a problem. My sister who was going to stay with me during and after my surgery now can't. She has her own health problem that is equally (if not more) immediate than mine, and has to deal with it. She had cancer 16 years ago in her sinuses, and from her recent symptoms, it may have returned.

I only have my 16 year old daughter to depend on now. I'm not sure what good my brothers will be. They certainly haven't stepped up to the plate in the last four months during my pre-op treatment. Please give me a run-down on what I will need my daughter to do. I want to go over it with her to make sure she can handle it. Thankfully, she has her driver's license now and can do the shopping.

Shirlann

Nancy, forgive me, I don't know what you are having done.  If necessary, you can always get a cab, unless you live too far away.  Ask a neighbor, church?  If this all fails (ideas I am sure you have thought of that won't work), ask the hospital.  They may be able to help.  Around here, we have  shuttles that ferry people back and forth for appts. to  docs and hospitals.

Wish I was near, honey, I would be there in a flash.

Hugs, Shirlann