February 2012 Chemo
Comments
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Thanks Hun that's good to know. I hate the feeling of this drain it freaks me out a bit. I want a bath tomorrow they said I could but how do you do it? Over here they don't like you taking pain killers, they told me to reduce the dose by day three. If I did that then how do you do arm movements? Am not going to the concert sad to miss Bruce Springsteen.
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Ali, you Brits are a little too stay calm and carry on. :-) I say take the pain killers. Actually, studies of pain show that if you stay ahead of the pain, you heal faster. So rest and heal and give yourself a break.
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thank you all
Here is my dilema in my head. I hear that if you get up and walk and move around you heal faster. I also hear that you really need to rest for awhile to give your body the chance to heal. so when do I do which? Surgery was on Monday. so today i ended up sleeping in a lot this am. Then sitting in the recliner this afternoon. Now its 5pm and I am still in my pjs lol. I feel a bit better sitting now at my desk but a bit weak and dizzy too. So far I am not in much pain.. still have the pain pump. I took pain pills at the slightest twinge about 5 hours ago and will again before bed time just in case. Is that good enough?
Thanks everyone for your advice it really helps
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Jen - I think you do what you can and what feels right. If your body is telling you that you need sleep, then it's right. If you are getting fidgety, then it's time to stretch your legs. I get up and walk around just because I'm going stir crazy. If you are feeling dizzy you don't want to push it to walk more.
My current struggles are a little more emotional. My mom has been staying with me. Our relationship isn't very close, but it's not really strained. We don't have a ton in common and it's more or less quiet. I am so appreciative she is here and want her to be comfortable, but I'm struggling with choosing between loading the dishwasher and making her feel bad (she always says - I was just about to do that) and letting it go. She has been a huge help in making healthy food choices available. Instead of fruit salad - id probably have chips for breakfast. Seems so petty that I feel guilty even thinking it. But I'm going stir crazy and if there's something that needs to be done and I can, I wanna do it. Am I a selfish brat?0 -
Ali, Faith and Jen
You're body will tell you. If you feel like walking around, unloading the dishwasher whatever, then do it. If you just want to sleep, then do that. For the first 5 days or so after surgery you need lots of rest, some good nutrition and good bowel movements. Oh ya and pain releif. In a week or so you'll feel more your old self and once those drains come out, lookout! I was about 10 days or so and when they came out I went out and had my hair done. I felt like a million bucks! My MX was December 14 and I went out to a friends for Christmas dinner AND out to a small New Years Eve house party. A couple of weeks will make all the difference in the world.
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Faith, just tell her when you need to do something that you are going stircrazy. She will probably understand. Good luck. Jen, move when you feel like it. At first you wo.t do it very much. A bit later on you will do more. Try to do one more lap around the house each time. But try to get up every couple hours, it feels good to move a bit even if getting up is hard. Good luck.
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Wow we're getting quite the rain storm here now. We really need it but holy crap! Hopefully it will lower the tempurature. I'm sure it was 40C with humidity today. Way too hot for me!
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So, today I had a patient who is stage IV bc, 12 years of NED! Just thought I'd share that.
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firstcall...That is so great to hear! Thanks for sharing. Hope you are well.
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That is good to hear. Thx, firstcall.
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Thanks for sharing Firstcall. We all need to hear these long term real life positive stories!!
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Firstcall that is so good to hear. When I first saw "stage IV" my stomach clenched and then to hear she has had NED for so long...wow, that is incredible.
faith, you are not being selfish at all. Just let her know what you want to do and what you need help with. Like moonflwr said I am sure she will understand. I am thinking about asking my mom to fly out to stay with me if I have a mx. We do not always get along but I think I will need the help, and I think it would be nice to have mom here during that time.
Ali and Jen, I hope you are both feeling better. I appreciate your sharing your stories, it helps to know what is coming next.
I am a ball of nerves this week. Almost had my port out this week. I have an area over the port that never healed right, and the other night there was a hole there, and I could actually SEE the port! Just a spot but still. I was freaking out. Long story short by the time I saw the surgeon the next day, he was ready to remove it, but the skin had already started to heal over, and the surgeon called my onc who requested it stay if at all possible. Onc says the herceptin every 3 weeks through next February would be too hard on my veins. So if that happens again they will remove it but hopefully it will not. I have my 2nd opinion surgeon appointment tomorrow, which I am anxious about. I have lots of questions. Leaning towards mx (onc says he recommends UMX not BMX for me), but still hoping against it somehow. On top of everything, my sister is 10 weeks pregnant or so, and her bf is being abusive. It makes me sick to my stomach. She does not live near me, and she is not wanting any help or involvement from family right now. It's so upsetting. This will be the third night this week I have had to take my ativan, otherwise I would get no sleep.
Sending love and prayers to all of you.
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i'm sitting at work and posting before i punch in--my home comp is having fits so--
tonite we take a car load to the new place and then tomorrow, after my 7 AM labs, .......we move!!!!!!!!!!!!!!!!!!!!!!!!
not sure when i'll have comp set up at home so this may be it til monday at work....
gals- walk-walk the dog walk to the bathroom walk at a store if you feel up to it- push a cart! --walk around the living room.....
and rest!!!!!!!!!
firstcall i get tingly goose bumps seeing 12 years NED!!!!! we needed thast today! thanks!!!
big hugs to all of you...signing off for a few days .......and wearing a happy mover camper smile on my face!!!!!!!!!!!!!!!!!!
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Firstcall
Thanks for that encouraging story. Amazing
Christina
I hope your sister finds the strength to leave this guy. Here's hoping her Mama bear kicks in and she puts her child first and kicks this guy to the curb.
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preliminary path reports- nodes negative and clear margins
doing some extra testing on some parts to make really sure on everything. I should find out on Wed with my first post-op appt.Today I did get up and take a shower.. then I had to rest lol. Dressed now and going to go sit out on the porch for a little bit. Really really want to go grocery shopping as there isnt much to eat in the house but doubt I could do that just yet. All in all I feel pretty good.
Firstcall thank you for that!
Christina, I wish you the very best and you get the support you need!
hugs and sunbeams to all!
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Thats great news Jen - enjoy your porch.
Gayle
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Jen - so happy that your reports came back with negative nodes and clear margins! I can't imagine how relieved you are.
Met with surgeon #2 today. LOVE him. Super nice, very experienced. We are going to go ahead with the UMX. I am scared, but I know I am making the right choice. He also took out my port. Said it had to come out, it was open and exposed and would get infected. So out it came. Only took about 15 minutes. Sure smarts now. Onc says I need a new one, does not want to do IVs through February for my herceptin. So I am scheduled for a new port on July 6th. UMX will be August 10. We went through some names of reconstruction plastic surgeons and Monday I will call and get a consultation set up. I am really feeling relieved about this plan. It feels right.
On a SE note, the swelling in my feet is minimal at this point. My nails look like crap and two are lifted, but none have fallen off yet. Hang in there guys!
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Yay Jen! Happy news. Christina, I am glad you made your decision and are happy with it. Sad you have to get a new port though. But an open wound with access almost direct to the heart is not exactly whatyou want to get infected! Much love.
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Had my last chemo (12th Taxol) yesterday. (Had 4 A/C's before that). I'M DONE! Hooray. Now, I have four weeks off till I start RADS. Have appt with RO next week so unsure now as to what the regimen will be.
To those who've had surgery and rough times, I'm sorry to hear that. You've received good advice. Walk, Rest, Drink, take the pain meds. Within a week or so, hopefully, all of you will be feeling better. I remember how scared I was about surgery but it seems easy in hindsight compared to the chemo journey. But it's different for each so follow the medical advice you get.
I'm still dealing with neuropathy and extreme fatigue. MO assured me this will ease up in time. But chemo nurse told me the fatigue can take up to 6 mos or a year to finally go away. Not what I wanted to hear. Also, still dealing with metallic bad taste and non enjoyment of food. I've been told that will go away also in time. My surgery was Dec 27 and this has seemed like a long time dealing with all this. I thought it would never end! Dreading the RADS but gotta do it.
I read all the comments when I have a chance to catch up and think of each of you. Take care. Hugs to all!
Karen
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Christina-I was relieved when I made my decision too. I am glad you feel comfortable. that will make the journey a little easier.
Karen- Grats on being done!! The last one took me a bit longer to recover from but by the time I had my surgery, 4 weeks out things tasted better and I was feeling better.. not Chemoy. I am tired now but not nearly as bad as I was on chemo. I hope yours gets better soon too!!
I will be doing the RADS journey with you too.. Starting in August I think
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"Pink Sisters"- I really need input on how to handle a bad situation. Let me begin by saying that I love my oncologist. He's been 100% there for me since my first visit to his office. It's a two hour drive to his office, but worth every mile. But I've never liked the staff at the chemo facility he uses. They're all very somber and Wednesday Addams like. Very cold. Never smile. All business. I get that a chemo facility houses some very sick patients, but the funeral like pall that hangs in the air over that place is horribly depressing, for anyone there. There is an unspoken "do not speak or bother your neighbor" policy. And a spoken house policy- one guest per patient and your guest gets to stand during your treatment time. No chairs. My chemo sessions lasted about 6 hours--and that's how long my sweet husband stood next to me. I've heard other patients complain about the staff- I once sat next to woman who, during her first chemo treatment, kept bending her arm at the elbow. Every time she did this, it set the IV machine off squawking and her nurse had to come over and reset the machine. After a few repetitions of this, the nurse bent over and hissed at the patient, "If you don't keep bending your arm, I am going to tie it down!" The poor woman burst into tears--and before she left that day, requested she never have that nurse assigned to her again. As it happens, my situation involves the same nurse. I finished my fourth (and final) round of chemo two weeks ago. (YEEEEHAAAAAW!) I had every bad side effect known to man caused by chemo--except for nausea or vomiting. Go figure. The taxotier (sp inc?) targeted my mucousa system, and I had a raging case of diahrrhea for months. My body wouldn't hold the water I was drinking long enough to stave off dehydration so my oncologist suggested that I start going in for IV hydration with benadryl and some kind of steroid concoction, it kept me hydrated and the bad side effects to a minimum, and I felt so much better after that IV. I was having these treatments 3 times a week if it was a chemo week, and then twice a week the second week out. This regimen worked great until after my fourth round. I am at the end of my second week, and went three days without hydration, and felt really sick. So I decided to go back in and do more hydration. Other nurses at the chemo facility have asked my why I keep coming back for hydration. Two of them have actually pointed to the IV bag and asked me, "Do you know what's in there? It's just water. If you feel better after this treatment, it's psychological." Like, the hydration treatments are a placebo and I'm a headcase. I checked again with my oncologist, and he said because the water from the IV goes directly into my blood stream, it is not absolutely not like drinking water, it's ten times more effective. So the nurses are WRONG. Today, I could tell right away that my nurse was in a bad mood. I know she's really sick of me--I have terrible veins and it's always a big deal to get me hooked up. After all my chemo and hydration sessions, my left arm looks like I'm a full blown heroin addict I sat down and she started poking around and sighing, and then she looked up at me and said, "Do you still have diahrrhea?" I said, yes, but it's much better-under control. Then she said," So....why are you here? I don't want to sound mean, but you know, you're only getting water in that bag. If you think it's doing you any good, that's in your head." Now I'm close to tears, already beaten down by this dreadful disease and too weak to duke it out with Nurse Ratchett. "Um, no--that's wrong. Dr. **** said that water going directly into my blood stream is far more effective than just drinking water." She looked back down and sort of shook her head. She didn't dare say the doctor was wrong, but she sure wasn't going to admit that she sat corrected. She got my IV in, and as she was walking away, she said over her shoulder, "What you really need to do is something about that psoriasis on your arms." She practically shuddered. Yes, I do have psoriasis, and yes, chemo has caused it to go wild. It's really ugly but with all my other cancer side effects, I don't even think about it. but having someone announce it across the room was humiliating beyond words. The nurse disappeared after that. She had other staff finish her job. so my question is, should I report this abusive treatment, and to whom? I have to go back to this facility a few more times, and I am determined to keep my head up and not be bullied by this staff! any advice? hugs and prayers to all of you!
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intrepidspirit-That is just horrible! I most defintely would report it and to her supervisor. This battle is physicaly, mental, and emotional. You do what your doctor tells you! I used to have issues with hydration as well and the nurses would suggest getting more fluids and said if i ever felt bad to come in and they would give me a bag right away. I am so very blessed to have amazing nurses in my infusion center. They smile when I come in, encourage us to talk to others and provide chairs for our visitors. They go out of their way to make sure it isnt like a morgue in there with their bright personalities. In fact one of the nurses came up to see me in my room after my surgery on Monday on her break. They are wonderful caring women and if not, then they shouldnt be in that job.
I would let your oncologist know and also their supervisor. this fight is hard enough without that!
I wish you the best of luck and I hope things get better for you soon!
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Intrepid, That is not acceptable. Print out your reply here, and email it to your mo. No chairs? Bring a folding camp one. If your mo gets enough complaints, he will find another facility. My nurses have all been helpful. I too suffered diarrhea and had to go for fluids and usually magnesium. The fluid you get in Ivs gets in much faster and stays in long enough to make a difference. Ask your mo if there is a different facility anywhere. Wow, I can't believe they treat you that way.
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Karen
Yay to being done with chemo!! Try not to worry about the fatigue etc lasting 6 months, it might not. I was having major muscle fatigue for about a month after my last TX and I was told the same thing, but it eased up and is gone now. I'm 9 weeks PFC.
Inprepidspirt
That centre you're attending is brutal!! I would definatley complain to the MO and the supervisor as well. Its hard enough deal with TX in itself never mind being in such a crappy atmosphere! While I don't exactly look forward to TX and I'm only getting Herceptin now, I can't imagine how much worse I would feel having to deal with a Nurse Ratchett and their stupid policies around not having a chair for someone that's accompanying you. This nurse is being abusive. Where I'm being treated is natural light filled and I've never had a surley nurse and chat with my neighbor if they're open to it (I try to let them take the lead so as not to impose).
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Karen - Amino Acids will help with the muscle fatigue..and overall fatigue. My MO was very supportive of taking them. It helps with muscle repair :-)
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ok....time for a little diversion.....my son Bryce is a music major in college, and he is quite good on the trumpet. A group he plays with was chosen to open for the July 4th Stadium of Fire show. The beach boys are doing the show, along with fireworks, and Bryce's group has the honor of warming up the crowd before the Beach Boys come on. Here's a link...
http://www.youtube.com/watch?v=v53jzg8qW_k&feature=youtube_gdata_player0 -
Firstcall, that is just so awesome, you must be popping buttons proud! Congrats!
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Karen - congrats on finishing chemo!!! The taste buds DO come back. This week I actually had the urge to drink a beer; have not had that urge since I started chemo. Now I know they are back - Woo hoo!!!
intrepid - I would definitely talk to your onc about the nurse. I would bet any amount of money that he or she will set her straight. And if not I would complain to whoever manages the center. But start with the doctor first. And you can tell that nurse that as soon as she finishes medical school, you will be glad to hear her opinion on how to treat your cancer and the side effects from treatment.
Firstcall - that's cool, you must be really proud of him.
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Intrepid, one more point. I ended up in the hospital with acute renal failure due to, you guessed it, diarrhea. That is another reason they give me extra fluid after my tx now. They don't want me in the hospital any more than I want to. You really have to talk to your mo. Also, just curious, was a port disscussed?
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Thank you to all who replied to my post. My oncologist is on duty at the infusion center on Mondays, and I have an appt. to see him and get hydration. I think I am going to explain the situation to him, and ask him to bring Nurse Ratchett in so that she can explain her theories on hydration to him, and also so that she can apologize to me for the humiliating comment about my psoriasis. And for sure, I won't have her poking at my arm anymore! I am also going to type a complaint so that I have a written record of what happened--and I will request that a copy of the complaint go into her personnel file. Geez, do I need this additional stress right now?! argggg....anywho, the upside is that I AM DONE WITH CHEMO!! And Thank God for that!!
hugs and prayers
melissa
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