In shock

MariaNL

Hi ladies,



Sitting here at treatment. Fun times had problems putting needle in my port, it hurt like a Son of a gun.



I've been keeping up with you all just haven't had much to say this week. Been in my head a lot. Worried about work etc.

My daughter reinjured the shoulder she had surgery on at her meet Sunday, she is having an MRI tomorrow.



Edi I hope you are well



Alive glad your recovery is going well.



Nahahi I'm praying that they will not have to take to much tissue, I'm so sorry you have to go through that.



Caitlin I hope rads go well for you with little se's



Liefie strawberry jam yummy, I can taste it now!



Traii finally a date that has got to be a relief.



Everyone I didn't get to I hope your doing well. Bless all of you

sarajaneevans

What are cold caps? I am having surgery tomorrow to widen the margins more and to put in a port for chemo- do you lose  your eyebrow hair  as well ?

sarajaneevans

@MariaNL- can you please explain the port to me.. I thought the whole idea of that was so they don't have to stick you each time??

liefie

Sarajaneevans, best wishes on the surgery tomorrow!

Cold caps are what some people use to prevent hair loss from chemo. It is a frozen cap that you keep on your head during chemo, and it has to be changed to a fresh frozen one every 20 minutes. I believe there is another thread on here where this is discussed exclusively.

Eyebrows - I never lost mine completely, but they are certainly much thinner than they ever were, and I now have to use an eyebrow pencil to fill in the missing spots. Lashes came back as they were before. Chemo ended for me on May 7, 2012, so I think what eyebrows I have now is how it is going to be. Don't expect more growth at all, but it's fine. I'm alive . . .

Hope Maria will explain the port question. Did not have one, so can't comment.

Delvzy

DIM goes under the trade name of Indoplex in Aus and NZ it is a natural product made from crucifix vegetables like cabbage broccoli etc. my onc natropathic lady says it helps you to metabolise est better when I go off it I start to feel horrible with hot flushes. Yes we are spoilt weather wise it's going to be 15 d Celsius that's about 55 in your language hubby is about to go on a fishing camping trip for out long weekend I will stay home with my 10 year old son by the fire thanks

websister

Sarahjaneevans - I have a port. It provides access into the vein but they still need to use a special needle to access it. The port is usually placed just under your collarbone, mine is on my right side of my chest, sometimes they put them in the upper arm though. There are usually bumps on the port that help the nurse to feel where to insert the needle. My port is quite prominent and the nurses have never had trouble accessing it but I have seen them struggle with some other patients if it is deeper into the subcutaneous tissue or if it flipped. The first few times they accessed mine it stung but now I don't seem to notice it much. You can use a cream like Emla cream over the port prior to your treatment to help with that.

MariaNL

Hi ladies,



Sitting here at treatment. Fun times had problems putting needle in my port, it hurt like a Son of a gun.



I've been keeping up with you all just haven't had much to say this week. Been in my head a lot. Worried about work etc.

My daughter reinjured the shoulder she had surgery on at her meet Sunday, she is having an MRI tomorrow.



Edi I hope you are well



Alive glad your recovery is going well.



Nahahi I'm praying that they will not have to take to much tissue, I'm so sorry you have to go through that.



Caitlin I hope rads go well for you with little se's



Liefie strawberry jam yummy, I can taste it now!



Traii finally a date that has got to be a relief.



Everyone I didn't get to I hope your doing well. Bless all of you

Thought this sent hours ago darn kindle

MariaNL

Sarah, didn't mean to scare you. The first two treatments went fine. She thinks it may have moved a bit. They do have to poke you but not your. Veins everytime

nihahi

Maria......we are here for the good news AND the tough stuff. Sorry you've had some rocky times and worries. Hoping for good news of your daughter, and gentler days for you.

I'm hiking tomorrow, ladies....I'm planning on lunch in our meadow

Dakota212

Hi ladies -

At a red light can't comment on everyone .....

Drs went great.... MO again in 6 months. Surgery for nipples on July 19 they are also going to Fill on a "dent" with some fat so I also get liposuction I guess another small quirk of BC. I am off to my glamorous job.... I scan in and out patient prisoners once a month it's creepy but pays well. No princes there !!!!!

Traii did I miss ur date? Oopps green gotta go. Hugs to all. Edi I miss u !!!

Traii

No no no date nihahi got a date for her surgery. Ima just waiting...

Oh and dont drive n type missy.....norty girl!

glad appt went well and nipples and lipo all booked in



Off to bed now...enjoy your day

Jennie93

Good morning sisters! Hope all are well today. A little sunshine here which does wonders for the mood.



I need to ask for prayers, nothing major, just been having a little rough spot. Is it normal to have these emotional swings or should I blame it on the tamoxifen? (LOL)



I was so happy at the end of rads, thinking all this was over now and I could get back to my life. But it hasn't worked out that way. The armpit pain & tightness never went away, well it all got worse all of a sudden and I'm thinking, seriously, why now? WTH?? Plus crazy mood swings, I start tearing up at the dumbest things, NOT like me at all!!



I think maybe while we are still in active treatment, whenever we feel yucky we blame it on the treatment and figure it will get better eventually. But then when treatment is done and everyone around us thinks we should just magically be "back to normal", but then we still feel yucky -- and it hits like a ton of bricks that maybe it's never going to get better, that there is no going back to normal, that maybe the pain and impairment is something we have to get used to now. Which is tough to accept.



Sorry to whine but this is the only safe place where I know I can vent. And I know you all understand, too.

liefie

Awwwww, Jennie, so sorry to hear you're feeling a little low. This is something most of us experience when active treatments are done. It is exactly as you say that people expect us to suddenly be 'normal' again after we've just experienced this major life-changing storm in our lives. It takes time to process, and for everything to settle again into some version of normalcy. This experience changes us, and we have to come to grips with that.

I'm not sure however that you just have to accept that armpit pain and tightness. It just does not sound right that it is still so bad after all this time. Have you had it checked out? Maybe get another opinion? Physical therapy may be able to work wonders. It may take time, but it will be so worth it. Pain and discomfort are so directly linked to our mood, for me at least. If I am physically impaired or in pain, I feel emotionally impaired too. So I'm thinking that if you can do something about that, you will feel so much better. For me I just wanted to shake off that 'cancer patient' label as soon as I could, and get my life back. Big hugs to you, Jennie - hope you will feel better soon!

Dakota, good luck with the prisoners, and be careful! DH once had weekly medical sessions at a maximum security prison. He did it for a year. Those inmates called him every name in the book, from horse dr to quack and everything in between, cursed at him, got extremely upset if he did not want to prescribe or do what they wanted, and often threatened him even though the guards were always present. He said walking down those corridors he always expected a dagger in his back at any moment - creepy. I was so happy when he resigned. Who needs that?

Traii, what? Are you sleeping again? LOL.

Nihahi, you are probably enjoying the meadow as we speak - hope the sun shines brightly for you! I have an outing planned this afternoon - meeting DH at WalMart for grocery shopping - LOL. At least I can drive again, and get out of the house. Little windy and cooler here today.

Everybody else, wishing you minimal SE's and a very nice weekend!

websister

Jennie - sending hugs, agree with Liefie that maybe you should get the arm checked out - PT may be helpful. The end of active treatment can be tough for the reasons you state. It is also a time when many of us start our hormonal treatment like tamoxifen or AI's and I think they can play havoc along with the emotions that we finally have time to deal with after the constant schedule of getting through treatment ceases



Dakota - I agree with Traii, no more posting on here while at stop lights or driving period! We want you safe. It was always interesting when we had prisoners come in as patients in Emergency and later for surgeries when I worked surgery. It is already another weekend upon us.



Nihahi - it was a beautiful lunch in the meadow, it doesn't seem to know what it wants to do now weather wise, some thunder earlier but not much rain, now kind of windy. Hope you had a great day



Maria - hope the next time treatment is easier re: port access for you. Take care this weekend



Liefie - your Walmart outing made me smile. I'm glad you are doing so well and feeling restless, a good sign.



Benny - how are you doing now post rads? Any more Diamond days this week for you?



Edi - miss you so much



Everyone - wishing you a good weekend. Mine will be busy with a surprise birthday party for my MIL tomorrow afternoon, my oldest son and family coming into the city for that. Then a grad celebration for the new grads in our church on Sunday, need to make a poster board for that with pictures, also need to make at salad and dessert for the potluck lunch.



Take care

nihahi

Hi Ladies,

Jennie...sending huge hugs out to you. YES IT IS NORMAL, THE WAY YOU'RE FEELING! Yes, we "get it". It is such a huge thing that we ask our bodies and emotions to do, this fight against bc, and once the treatments are finished, and the flurry of appointments and attentions is over, there is still much, much, much healing to do. Get the arm checked out, get some physio if needed, and be gentle with yourself. If the dark thoughts stay too heavy on you, get some help for that too. Things DO get better, but it all takes time.

I'm tired, but I made it back to my mountains today. Not as high as I hoped, but enough to be grateful for the fact that I could get back to what and where I love most. You were all in my pack, hope you enjoyed the view!!!!!!

websister

What a spectacular view, Nihahi! Thanks so much for taking us there! Congratulations on the first of many more mountain memories for you.

Jennie93

Wonderful pic, thanks nihahi! That does lift the spirits for sure.



I have talked to the RO and been referred to the PT, they seem to think it can improve some at least.



I think the main thing I have to work on (mentally) is letting go of my anger toward all those people who told me nothing about the troubles that lymph node removal causes, and that some of these changes are permanent. All of the docs I saw before my surgery talked about the MX, what it would be like, warned me about the drains, all that stuff, you all know. Even my own mother, who had a MX many years ago, said nothing about the lymph nodes thing. All those people led me to believe that it would heal up and I'd be back to my old self. And that is so not true! I'm reminded of my surgery every time I reach forward to wash my hands or any of the thousand everyday things we do. And even if the pain eases someday, the list of things we cannot do with that arm for fear of triggering lymphedema is long and forever!



So, yeah, still trying to wrap my mind around the fact that we are changed by all this and there is no going back. And trying to let go and forgive all those people who should have told me this ahead of time, and didn't.



I don't think I would have made it through without all of you. So BIG HUGS going out this morning to everyone, I hope you all have a wonderful day. :-)

Dakota212

Hi ladies -

So much rain here last night baseball got cancelled !!!!!

Ok ok no more posting at red lights!!!! I get it !!! Hope everyone is having a great day !!! Hugs To u all !!!

nihahi

Jennie....I understand the anger, resentment, sense of "betrayal", etc......and I certainly am no poster child in letting go of those emotions. I could say things like "remember, they treated the cancer", "your life is more important than having to deal with LE", yadayadayada.....

But you know those things, and you still have genuine feelings of regret and a huge sense of loss of your former life and of your former "self". I don't think it is true that we learn to "get over" these feelings, but I do truly believe we learn to "get on" with our lives. In any category of life, there are no do-overs, so the best solution is to move forward, and that means having good days and bad days. Are you able to access any support systems, and things like gentle yoga, or other "put you mind in another place" activities?????

Physio may be very helpful for you in treating the LE, and teaching you things that you can do to help minimize the affects. The more knowledge you have now, the more you can help yourself and maybe feel a bit more in control??

Hang in there......you never know what new medical "thing" is around the corner. It wasn't that long ago that the reconstructive surgery I have just had, was nothing more than a dream in someone's imagination.....now, it's something done all over the world.   (((((((X)))))))

nihahi

hahahha Dakota.....you sure got busted!!!! 

Have a great day....congrats to your Boston Bruins...I'll be cheering for them.

bennymuffins

Wow, that is a beautiful picture, Nihahi! I really need to get out more. I love my horseys and even their mounds of winter hair and poop, but the mountains really do slow down the pace of life and remind us of the beauty of the earth.

Jennie, I totally hear you on the arm thing. I figured I'd be on the mend too, but my arm feels like the veins inside it are about 6 inches too short right now. It's painful and so frustrating, because I had no problems before radiation, had full range of motion, no pain. I didn't expect radiation to be so debilitating. Between the fatigue, weakness and too-short-veins, it's a contender for the "Giant Pain In The Ass" award. I am terrified of lymphadema and try to wear my gloves at the farm all the time (I am daily dealing with horses, poop, splinters [repairing very old fences], barbed wire, dogs, llamas, goats, sheep, cats, etc). Yesterday I built (from scratch) a mounting block. This involved using the round electric saw, various drills, etc. The farrier was out and we moved 12 horses (young ones) in/out of the arena, two stallions who DON'T like having their feet done. What I do every day is risky, but I CHOOSE to do it and I love it, I live for it. I was walking from paddock to paddock yesterday thinking about this irritating pain in my arm and thinking to myself I'd rather be dead than give up my life of farm work. Don't sit me in a rocking chair in a sterile room and pass me some wool and a crochet hook. That is not the life I choose. Anyway, rant over. I guess I could try the physio idea too, but after surgery I didn't do any of the exercises, so why would I do them now? LOL I haven't started my Tamoxifen yet because I don't want to deal with MORE crap.

Nihahi, sorry to hear about this new issue, but glad it's being taken care of pronto. If you need any help with anything, I'm just down the road, so let me know.

Love to everyone reading here today, dealing with this crap (crap, that's my 'word-of-the-day' lol)

Edi >>>>>>>

I put the first coat of paint on my mounting block last night and should have it finished by Sunday. I painted it PINK!! I know, I hate the whole pink thing too, but it just seemed appropriate. The barn owner's wife died of breast cancer so I think she would approve. I will post a pic of the mounting block when I'm finished!

bennymuffins

A picture of my giant plush toy from yesterday. Isn't that the sweetest face? Doesn't she look like the epitome of innocence?? LOL You'd never know she's a handful and a half!

nihahi

Benny.....get your ass going on those exercises, or start designing your adapted rocking chair!!!!!! It's time to put yourself in the drivers seat and start taking control!!!!!!!!!!!! hmpf.....retired OT miffed at your attitude!!! ((((X))))

liefie

Edi, is your boat still sailing? I hope your captain does not do any close island sail-by's, eh?

Jennie, I'm glad that your arm can improve - hoping for lots of improvement of course!

Benny, it's not too late to start the exercises, and I'm sure you can improve your ROM.  It works, it really does, little by little every day it will get better. That horse is just soooo cute.

Have to stop yakking. Nihahi's bread has to come out of the oven now - my house smells heavenly!

Traii

Morning here ladies..sun is shining (still freezing though)!!!

Have a baptism to go to today...really not motivated to go



Love the pic Nihahi. So proud



Jeanie i have the same LE arm gives me pain but most days its ok. I have to watch out as little things like playing with my ds the other week and he so little as knocked it and it flared up. I wake up most mornings with neuropathy and even when im driving my fingers get tingly. Its a pain in the butt..but life goes on. I'd rather deal with LE than BC!!



Liefie i havent started Tamoxifin either!! My oncs appt is on the 19th of this month. First one after chemo. He said we'd assess how Tamox was going and my after surgery...whoops guess i never was one at school to listen either....i bet he'll put me in the naughty corner!!!!



Benny..plush looks rather innocent....im sure di missed having all those photos taken!!



Love to all best i go and get my boys ready...yes even dh needs a kick up the butt once in a while....lol

xxx

liefie

Traii, oh Traii, that onc will soooo not be happy about the Tamoxifen . . . naughty girl, you! But it is your life, and you decide what you will and and will not do. I was so apprehensive about starting Tamoxifen, because after chemo and rads I had had enough of treatments and SE's, and just wanted to be done. The first time I took Tamoxifen last August it was like putting a cyanide pill into my mouth - LOL. Then I waited for the axe to fall, for the pains and aches to start . . . and . . .  nothing happened! A few more hot flushes than usual, that was the only difference. Most people actually do fine on it. Good luck! Enjoy the baptism too.

Have already eaten 4 slices of Nihahi's wickedly good bread . . . Lol.

Traii

I think i will start after surgery...hnmm next year!!! Lol

nihahi

Traii....what's up buttercup???? You are usually so happy to go to family get togethers???? Or is the lack of motivation today because you have to behave yourself for the ceremony??????

I don't know what dosage my tamoxifen was, back in the dark ages, but it was very doable for me. Everyone is different, everyone has reasons for and against. Seriously, this wait for a date is getting absurd!!!!! You are handling it waaaaay better than I would!

Liefie....gonna have to ration that bread,eh? It makes lovely toast, if there's any left tomorrow morning!

Edi....hope it's smooth sailing for you! 

Alive....Maria....how are you doing?

Traii

I ended up having a good time at the christening.  I was just having one of those 'can't be bothered' moments this morning.....I did end up having a good time....of course......I behaved in church...I really did. DS was a good boy too I was quite shocked...lol

I've learnt all about patience I think......I really am. I'm just plodding along doing my usual thing. It's funny because all the invites etc that we've had I thought I would not be able to make...well we have one more party next weekend (which I'm tipping we will be making) and then I'm ready for surgery....LOL.

I will give them another nudge this week I think to see where they are at..unless they already think I've had it and recovering at home...LOl (imagine that !!)

liefie

Traii, you've been more than patient, really. The upside is that you did not miss any parties, but enough now. How difficult can it be to schedule a date?



Nihahi, one loaf is in the freezer, what's left of the other one will be toasted this morning. I totally overdid the eating yesterday, but will pace myself today.