Starting chemo September 2014
Comments
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Jean, it sounds like you have a long road ahead of you. You are one of the strongest women on this thread. Seriously, I can't tell you how many times you have said something that has helped me. We will all be here to see you to the end of this journey!
LARock, I hope you are feeling better. I agree with Poppy, please call your MO. You don't want to get dehydrated.
Toby, that Taxotere is some wicked strong stuff! It only took a few drops for my reaction to kick in-anaphylaxis. My MO said I was done. Switched to AC now, and I am still breathing, but the other side effects are awful. I am having great success using Johnson's baby lotion on my feet. It isn't working so well on my hands, probably because I wash them constantly. I picked up some of the udder cream today based on the ladies in this thread recommending it. Hope it does the trick.
Went out today wearing a pre-tied scarf that just screams chemo patient. It was awful and itchy and too tight. But it motivated me to stop by the Salvation Army shop, where I scored 4 brand nrw scarves with tags still on, plus 2 pairs of pants and a pair of Star Wars pajamas for Little E! I spent 10 bucks! I doubt I could get one scarf for that much at Target.
Saw my PS today and I am done with fills. He wants to see me in 6 weeks for a checkup. I asked when he thought we could do the exchange, and he said late spring or early summer. That seems so far away!
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hi, new to this group and hope that's ok. I am finding it helpful reading your posts and have taken a while to choose a site to join, I live in the Uk In the North England.
I had a lumpectomy in August and started chemo on 2oct. 6 sessions at three weekly cycles, so just have had 2nd and feel really teary and tired. Zi had a porto cat has apparently my combination can burn your skin, it is cyclophosphamide and epirubicin, but they may have different names in the US. they give me the cold cap as well for my hair although a lot seems to be coming out.
if I can offer support and join in for advice that would be nice. I'm due to finish on 14the jan with a radiotherapy chaser in February. I also have an anxiety and OCD disorder which hasn't helped!!!! starting to plan a holiday in the USA next July to keep going and have something to look forward to.
Despite having loads of family and friends I feel so alone like no one understands, does anyone else feel like that?
much love to you all
Ailsa x
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Welcome to our group Ailsa. The ladies here are amazing. We understand in ways others not going through treatment can't. Please feel free to ask questions, share your struggles or just whine, moan and vent as much as you need to. Love, Jean
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Ailsa, Welcome! I'm sorry you are going through this, but am so glad you have found a place for support. No one can understand what we are going through. Our treatment goes on for a long, long time. We have good days and bad days. One thing that really helps me when I am having a difficult day is to come here. The ladies here will let me know what ever I am feeling is okay, I will get through it, and have better days ahead.
Is there a support group near where you live? If not, we are all here for you!
Poppy
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Alisa- Welcome- I often say BC is a very isolating journey no matter how many people you have around. I spend a lot more time alone then ever because I want to. I'm often teary eyed and worried, the chemo highlights that I think. Hopefully you're on good anti-anxiety med? that helps A LOT!
Are you using the Paxman cold cap? There's a very active thread on this board called "cold cappers" you might find support there as well. I'm in a clinical trial here in the U.S. for Paxman and I'm almost done! PM me if you need any help/advice with that. I found most of my Paxman cold cap hair loss occurred days 20-25, right where you are.hang in there!!!
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Welcome Ailsa! My middle daughter is currently living in the UK, as her husband is in the air force.
This thread has been wonderful for me. No matter how much support you have from family and friends, unless they have been through this, they really don't get it the way we do. You can come here to complain about the things you are experiencing, and somebody here will know what to say, and nobody will judge you for complaining. You can come here and share that you made it through grocery shopping without crying and we will celebrate with you because we understand that everything is harder when you are dealing with all of this. I second the suggestion to find a local support group. It has been a lifesaver for me.
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Barremom, what you said about BC being isolating is so true. I find myself spending a lot of time alone, too, by choice. Sometimes, it's just because I am so tired of spending all my time reassuring every other person in the world that I am okay, and sometimes, I just need the solitude to think, cry, grieve, whatever. I figure I get enough stimulation living with a six year old, and I deserve my alone time. I am so tired of being "the sick person" and it's easier to just shut out the rest of the world. I was the most outgoing, social person before diagnosis, so this is a strange new behavior for me.
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badhairday...I also was very outgoing. Now I grocery shop in a different town and pray I don't run into anyone I have to make small talk with. I always took long walks (5-8miles) but now theres no music clouding my thoughts. Perhaps I just haven't found the proper soundtrack for BC. Friends always want to "take me out to lunch", I wonder if they realize how effort that takes...to get dressed, make-up, hair and to talk for two hours? UGH! I say all this as I'm preparing to go to a small Bday party. It will take a lot to smile as the door opens but the Bday girl is worth it. Now, I only choose things that are worth the effort. I've gotten good at saying "no".
((hugs)) to all for a nice Saturday night!
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Hi wow what a response thank you so much. In response to your questions:
- I haven't found a local group as I don't want to go out and talk I can't even say the word yet so can't bear going somewhere to talk about it. Tapping Into my ipad is ok though, how daft is that at 42!
- the cold cap is paxman and yes you are right more came out today than any day, not sure if thinning or falling out? A wee bit cold and extends the treatment but it's worth a go. I believe from things I have read it is standard here and not so popular in the US, is that because of funding?
- I'm glad I've found this site, I have purposely not googled much, too scary. BUT this seems helpful and none of you are scary just helpful and I am grateful.
I'll definitely log in regularly to see how you all are. None of us should have to go through this and if I can offer support I will. Badhairday, where does your daughter live? does she like it over here?
this will change me now won't it? I can't imagine ever being the same and it scares me as if I get through this, I wonder how Ill change.
Night all, hope you all have a good sleep. I have been catching up on TV shows whilst going through this since finding it early August. Watched all series of West Wing, again and now found Damages. Any distraction x
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welcome gunnie..my mom to doesnt like running into anyone she doesnt like the small talk. She hates being looked at as the sick one they always look at her with puppy eyes. All she wants is to be treated like before. 😒
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Barremom, I get it. I really do. Especially the part about the effort I save my energy for the good stuff! A fellow survivor reminds me often that "No." is a complete sentence!
Gunnie, the beauty of the support group is that there will be several people there who felt just like you do. It's so affirming to talk and see all the heads in the room nodding. They get it, just like we do.
My daughter's husband is stationed at Lakenheath. They are enjoying England so much,, although she had to learn to drive a stick shift, and on the opposite side of the road! I miss them terribly, but am so excited that she's having such an adventure!
Every person I have met who is a cancer survivor has said that it changed them. Every person. I have changed a lot since my diagnosis in August. I'm stronger than I ever thought I was, more appreciative of my family and friends, I take NOTHING for granted anymore. Sure, I look and feel older, I am tired, thinner, and bald. But I try not to focus on that. Cancer has taken a lot from me, but it can't take my spirit or sense of humor unless I let it. I am growing and learning and fighting every day, and that is me changing for the better!
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Badhairday and Barremom, I was in that place where I wanted nothing to do with people, didn't want to go to lunch, work, or just generally leave the house and I learned to say no to my friends. My "real friends" have stuck it out with me and now we are stronger than ever. I have come full circle back into the outgoing person I used to be and really don't give a s**t how people look at me or what they think of me. I know what I have been through and I am proud of what I have accomplished and for that I have become stronger and a better person for going through the cancer experience. Cancer cannot take from you, what you will not let it. While I will always be grateful for all the friends whom I have met along the way, the friends that stood by my side, my online buddies, I will never be more grateful than to my husband for standing beside me and being there with me every step of the way. You can do this ladies, you are survivors, I believe in you!!!! Hugs
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I am completely exhausted, but in a good way. Today was such a beautiful day in Ohio. My friend came over with her kids for a playdate today. The kidd had a blast together, while she and I played with wigs and scarves. She helped me figure out how to tie them so they look cute, but are secure. (My secret fear is having my, wig, hat or scarf blow off in public.) She was so encouraging and honest about what doesn't look good. A true friend will tell you when you look ridiculous! LOL!
After they left, E and I decided to take a walk around the big block. It's about a mile. We ended up at the park, which meant 3 miles! It was so lovely and we collected some pretty leaves. Tons of people at the park, and I caught a lot of sympathy stares, but just smiled back anf chatted like any other mom.
The walk home kicked my butt. I was huffing and puffing by the time we made it back. But so glad I did it. My kid needed a normal day when his mom wasn't too tired or sick to have fun. We ended up having pancakes with strawberries for dinner. E thought it was such a treat, so I didn't mention that I was too exhausted to make anything else!
He seems to be doing better about the hair thing. He is fine when we are at home, but did say that when we have guests or go out, he wants me to cover my head. So I let him pick out a hat or scarf for me when we are leaving. Still haven't left the house in a wig. It feels odd and unnatural to me. May attempt it at mass tomorrow.
Nomatterwhat, go give that husband of yours a big kiss and a hug. You are blessed!
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Wow badhairday, it sounds even though your day has been exhausting it has been very rewarding. It sounds like a positive day and one that your son enjoyed. Good luck with the wig tomorrow, I am sure you will look great, and just think no styling and the more your wear it, I guess the more you will get used to it. I have choosen a few wigs just in case mine falls out, so I can go and choose one quickly.
Nomatterwhat - what a lovely note, I hope I too can become as strong as you, and everyone else in here.
Much Love Ailsa x
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Have had a lousy two days. Spent most of the time in bed. Took benedryl just to sleep and avoid the nausea. I think I'm going to call the MO on monday and ask for something stronger cause the compazine just doesn't do anything at all. She (MO) doesn't seem to believe in medications. Gives me the least possible and expects me to get by. Starting to really aggravate me. No pain pills, compazine for nausea, what the heck. I thought pain management was supposed to be a big consideration in medicine these days. Sorry - just venting today. Ignore me.
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Kaya I think you should call today. There is no reason you should be nauseated, in pain, etc. no, we won't ignore you cause we get it. They should call you in something now. Is it a small practice? Big? Maybe you could choose another there?
Hugs and wishes to all
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kaya - wtf?! I'm not a big proponent of unnecessary meds but they are absolutely necessary now. Ask for Ativan. It helps with nausea, anti anxiety and will help you sleep. What mo doesn't believe in meds when they are pushing chemo?! Is she a moron or just a jerk? Sorry I'm totally annoyed for you.
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Daniella, Your response just made me smile! I'm annoyed, too, and your response is exactly what I was thinking.
Toby is exactly right too.
Kaya, We are NOT going to ignore you. Your issues need to be addressed. None of us want to take meds that aren't needed. But we are fighting cancer, so this is definitely the time to take meds. I strongly feel that if we are feeling poorly, our recovery will take longer. You shouldn't be in pain, or nauseous, or not sleeping. Call ASAP. If you don't get help, I would find another MO! For the first 6 days after infusions I am taking a lot of meds. But this allows me to be upright, interacting with my children. It allows me to eat food, sleep..... all things that are good for you.... physically and mentally. If you don't feel well enough to make the call, have someone else call for you (husband, friend). My DH makes lots of calls for me when I'm nauseous or have chemo brain. The MO and nurses know they have my permission to talk to him about anything.
Let us know what happens! If you don't get results... I'll call for you!
Poppy
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Kaya, I agree with the others. Call today. If you feel like you can't be assertive enough, ask somebody else to be your advocate and make the call for you. I went through what you are going through last weekend, and it was awful. The ladies here insisted I call, and my MO was able to help me. In fact, she sternly told me I should have called sooner! If your onco, doesn't listen, find someone in the practice who will. I have found that the nurses at my cancer center are a wealth of information, and they jump to advocate for the patients. Please take care of yourself!
I chickened out on wearing the wig to church, and wore a pretty scarf instead. I am going to the look good, feel better class tomorrow afternoon. Hoping to get some tips there.
Have a divorce hearing tomorrow morning. So not looking forward to that!
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Kaya, NO, NO, NO, we will not ignore you!!!! I agree with all the others. Call TODAY and if you get no satisfaction today, call tomorrow. Raise the roof until they know you mean business and will not tolerate being treated like this. There is no reason to be miserable. If she won't give you anything, find another doctor!!!! Please, Kaya, take care of yourself. You are going through enough without having to fight your doctor for help.Badhairday, You can handle tomorrow. Don't let that SOB get to you!!!! You are stronger and smarter than he ever thought of being. Get him, girl!!!!! Enjoy the LGFB class, that was definitely a turning point for me.
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Badhairday,
Great advice about the nurses!
I feel odd when I wear a wig. But, when I do it, I don't draw the "looks" that I get when I wear a hat or scarf. I look like a "normal' person, so people don't notice.... like they do when I am sporting the scarf/hat. I found that I like it when I don't draw the "you have cancer" look. So even though I don't look like myself with the wig, it's nice to be treated like a regular person. It's easier on my kids, too, because they just want to be treated like regular kids... not the kids with the mom who has cancer.
I did the Look Good, Feel Better class, too. The best part for me was meeting some ladies battling their way through cancer.
Best wishes for your difficult day tomorrow. I know you aren't looking forward to it, but every step you take is one step closer to where you want to be.
Poppy
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badhairday good luck for tomorrow i will be thinking of you x
Maya i hope you get sorted, you shouldnt be going through all this pain. I don't really don't understand what an MO is but please call and see if she can do anything, be persistant x
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NOMATTER....You sincerely crack me up.
Badhairday, you have the whole team behind you here!!
Poppy, like you I feel "weird" with the wig. But for work reasons I am wearing it as I have not shared with my staff, only two
After going all weekend bald, or with caps especially it is an adjustment. DH washed and conditioned mine today. Smells great, but I swear that one wants to lose its hair too! JK. I am really careful using a wide comb to de tangle.
I called my MO today due to the rash/reaction to the taxotere. The red blotches on my legs don't itch, or bother me. It's the hands. The pain I can manage with aleve, but the redness, swelling is awful. I look like I have lobster claw hands and chicken pox everywhere else
She said bendryl cream and oral. So after being in house all weekend and not having a great attitude I got dressed and went to target with DH.
Not happy wearing long pants and sleeves in this florida heat but felt better getting out.
Poppy, yes no stares .
I think my expectations for this cancer/ chemo ride have been way off. I read with interest about the isolation, etc.
I forget it's poison. I forget it's been a week since last infusion. I forget I will be depressed, and angry
I just don't like it, as that is not my personality. I think the damn stuff makes me paranoid. Is chemo brain allowing me to perform at work? Do folks at work think I am acting different?
I have not realized how stressful that is too.
Kaya, hoping you made that call. Bad hair, we will all be thinking of you tomorrow. Poppy, hoping you had some quality time with the kids this weekend. For those of you experiencing fall, enjoy!!!!!
Hugs and blessings
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Kaya, I will echo the others, call the doctor! If that one won't give you something that provides relief, find one who will. My doctor pushes drugs on me for things that MIGHT happen, just so I'll have it available. I have two prescriptions I filled but haven't even used yet! As someone else somewhere on one of these boards said "They don't hand out those pills just because they ran out of tootsie rolls". No need to be a hero.
I've just had one of the roughest weeks so far. Yesterday I was despairing of ever feeling good again, swallowing pills, smoking pot, whatever I could get my hands on. I even resorted to the Vicodin, which I hate, just so I could get some sleep. Today is much better, I think I might live.
Spent the day on the sofa watching the English football, and my team won. Then I was flipping channels and stumbled on a completely unexpected Jackson Browne concert. Jackson is one of my absolute favorite artists ever. I'll take it as a sign.
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Thanks to everyone for the advice. I actually felt a bit better yesterday so I held off on calling. I do plan to call first thing this morning and hash it out with the doctor. She's a well respected breast cancer specialist in our area - one of the best - but I guess I don't understand her attitude about drugs. I will get it cleared up today. I don't believe in suffering either when there are drugs available. When I was first diagnosed, I asked her for an anti-anxiety drug to take for a few days. I was such a mess that I couldn't stop shaking and wasn't functioning at all. She practically made me beg and then gave me an Rx for 6 xanax pills. 6. I should have known then. She kept saying stuff about not wanting me to become dependent on drugs. It was kind of offensive but you know how you are during those first diagnosis days - things just don't register. In any case, I will have a very frank discussion with her today. Thanks again.
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KayaRose- Absolutely absurd! 6 anti-anxiety pills? Perhaps your Primary doctor can write a script for that?? Mine did, with several refills and I'm capable of using them as needed, you are not a child for goodness sake. You know what you need- I'm so sorry you have to fight for this.
I'm having trouble communicating with my plastic surgeon it's enough we are going through this journey and then to have a doctor make it harder is just SO frustrating!!!!!
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Kaya, glad you are feeling a bit better. But stick to your guns and get what you need so that the next time the ick tries to get you, you will be armed and ready!
Court today was a big, fat nothing. Sitting in one hallway or another while the lawyers ran back and forth. I left with exactly the same thing I walked in with as far as suppprt, 50/50 parenting time, etc. Judge will rule on additional money my attorney requested within a few weeks. Husband left looking less than pleased. I think he really thought the judge was going to tell him he had to pay nothing.
Drove all the way to Look Good Feel Good class, only to find out it had been cancelled. So disappointed. I was really looking forward to it.
Another beautiful day today. Going to try to take advantage of it and perhaps get a walk in with Little E after school and before PSR. Gotta squeeze homework and dinner in there too. They are calling for sbow flurries by Saturday. Not ready for winter yet!
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Thanks for the update Badhairday. Bummer about the look good feel better getting cancelled. I learned how to make a head cover out of an old t-shirt at mine. Too bad Little E's dad doesn't realize the support is for his child... not for you to live extravagantly. It's a common problem...
It's been two weeks since my second infusion and I am too exhausted to get out of bed. Did this happen to anyone else?
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That's me, Poppy, living the extravagant life! LOL! Perhaps I should buy myself a diamond crusted barf bucket, so I can really live it up on the husband's dime during chemo. I am barely sctaping by, and he acts like I am living the dream. The only money I have spent on myself in the past two months is for pills! And $4 worth of scarves from the thrift shop to cover my bald head. So selfish.
When I had my TC treatment (without muxh T), I was hit with overwhelming fatigue on days 15 & 16. Take good care of yourself, and rest as much as you can. Make sure you check your temp.
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Hi everyone, I am still catching up!
Kayarose I will second the advice of discussing your anxiety and needs with your primary care physician too. I am RX Klonopin by my PCP, I went to her first because we have a long standing relationship, but my MO seemed more than willing to give me whatever I need to remain comfortable.
Tobycc I am having some peeling around my nails as well, but I am also a picker so I am sure that does not help. My hands are super dry too if I do not moisturize them.
Today I had to delay treatment because my WBC was way too low. I am 2 treatments in, today should have been # 3. Next time they are going to give me Neulasta, which I am okay with!
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