Starting chemo soon & need advice
Hi all - I'm not sure if this is the appropriate forum for this post, but I'm guessing some of you have had the same regimen, so I thought I'd post it here. I will be starting dose-dense AC+ Taxol....don't have an official start date yet but I think the end of next week.
My question is......I live alone. Will I be able to handle this? Other than the damned cancer, I'm fit and healthy. My extended family is insisting that I will need to stay with them during my treatment,something I DO NOT want to do under any circumstances. Aside from some family issues that I won't get into here, they live at least an hour from my doc/hospital, while I am 10 minutes away. It would also cut me off from my friends and other support.
This all started because my SIL knows one woman who was very sick throughout her treatment...couldn't get to the bathroom or even get herself a glass of water alone. My understanding is that this is the exception, not the rule. I was imagining I would have some days when I felt really crappy, and other days when I felt crappy but functional. If that's the case, I can handle it. Any feedback would be appreciated. This is making me even more nervous. Thanks!
Comments
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Hope...looking back..I "think" I could have been alone during the chemo...however...will you have someone to maybe bring you dinner the night of chemo? Will you have somone go with you to your chemos..just for support? I drove home after every chemo..so was fine that way..never threw up either..
The chemo center will also give you a 24 hour number to call in case you need anything.
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In all honesty, if being with your extended family will cause stress then stay home, unless you are so ill (which I doubt) that you need help. The only thing I would suggest is to make sure you have a friend that you can count on in case of an emergency and to help coordinate food deliveries and/or help you with shopping and errands. And....you may want someone stay with you for a day or so after your first and second chemo just in case you need help while you adjust to how you will feel and the medications.
Chemo isn't a walk in the park, but it's doable. I did have a lot of help from family and friends, but when they were at work and school I was home alone and I was fine.
(((hugs)))
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Second that Jen! Hope..the last thing you need is more stress...you need to be able to come home from chemo..and do what YOU need to do..whether it is to go walking..or eat..or rest..or come on here and tell us how you are doing...the last thing I wanted was people hovering over me...
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Hi Jenn and Titan - Thank you for writing back to me. Yes, I have friends who will take me/pick me up from chemo, and help out with errands when they can. Also, one advantage of living in NYC (Manhattan)...and believe me there aren't too many....is that you can get almost anything delivered to your home at any time (we tend to have very tiny kitchens, but very large folders for take out/delivery menus ...lol. ) I was mostly worried, based on my SIL's input, that I would be totally imobilized every day for the 4 months of my treatments. Maybe this is just fear of the unknown getting the better of me?
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Hope..your SIL is not helping you with her "stories" of chemo...It is not like it used to be...you shouldn't get sick and if you do your oncs will give you something to remedy that... it is not fun..but it won't totally immobilize you either!
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Hope..I am on the same chemo as you will be starting> i am finished with the AC and am done with two of the Taxols. You will be able to be by yourself if that is what you prefer. I also never threw up but did have moments of queasiness.
I found that with the AC I was fine the day of treatment and the next 2 days while I was taking the steroids. Then I would crash for about 3 days. On the worst days i would just lie on the couch all day and watch TV or sleep. I was able to get up and make myself breakfast or lunch. I have a friend that started a "food chain" for me. For the first day of treatment and the four days after that I get dinners dropped at my door from friends. I have 2 teenagers and a hubby so that is a huge help.
A good lesson I learned is that when people start telling me cancer stories or stories about people they know that went through chemo, rads, etc. I immediately cut them off and say, "If this isn't a positive story or doesn't have a happy ending, I really don't want to hear it." It makes most people think about what they are saying! You will be able to do this. Maybe you can tell your family you'd like to start on your own but will certainly reserve the right to change youe mind if you need to!
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Hi Hope , I just finished my dd ACx4 and i to live alone and was concerned if i could do it by myself too. Keep in mind that every one is different, but my DR wanted me to have someone with me the first night, also they gave me ativan which is a tranqulizer so i couldn't drive home. My experience was i was just so so tired, i didn't get sick at all. The first two didn't seem so bad and the third was a little harder, but the last one seemed to make me more tired than the rest. I didn't want to get up to do stuff, but i had to because i was on my own. So i think you will be fine but you will just be really tired. To be honest it was better because i had to do things for myself and that way i got up and down alot, otherwise i just would have stayed in bed the whole time. I would really suggest you have someone with you the first one for the first night just to see how you react to it. I hope this is helpful to you. I wish you the best of luck Get lots of rest and take care of you1
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Hope60, I live alone as well and I knew even before I started chemo that I didn't want to stay with anyone or have anyone stay with me. Obviously if it had gone very badly that might have been different. But I value my privacy and I knew I could always ask for help if I needed it. Chemo was unpleasant, in all kinds of ways, but some things I was scared of, like nausea, never happened. The drugs were very effective in that respect. I worked through all my months of chemo. On infusion days, I went to work in the morning then walked a few blocks to the hospital, did the infusion for several hours, and took a bus home. Sounds crazy I know. But the thing is the problems never hit me until 2 days later. Here's what I learned. The scheduling was key. I had the infusion on a Thursday and thought I would have my worst days on the weekend when I could rest. But actually Monday was maybe my worst day. I would have backed the treatment up a day thinking about it now. Also the effects are cumulative. After the first one I thought, hey this isn't so bad, but by the 4th one, I was really struggling with some of the SEs. Still by then I also knew what to expect. I had become an expert on the stages of the aftermath.
I should have taken some time off during treatment. I didn't take a single day off except the hours of the infusion. I would go in Fridays because Fridays were fine, it hadn't hit me yet. But now I realize I stressed myself out way too much. It wasn't heroics or anything. My office has had several rounds of layoffs and I am terrified of losing my insurance. I am just bringing this up because while being on my own was no problem in chemo, working too much was. I would say do what feels comfortable to you. It sounds as though staying with your family would be much more stressful than keeping your regular routine and having support from friends. I was very happy to be in my own place when I was having difficulties.
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I think people assume that if someone is on chemo they can't get out of bed and that may be the way it used to be, but not today. There are so many different medications to help with the SE's and they use these medications before, during and after your chemo. I did AC x4 and Taxol x12. I did take time off from work and had days that laying on the couch was all I wanted to do. But.....I did get up every day by 7am walk the dogs, shower and get dressed for the day. If I felt good I ran errands, cleaned house, cooked, etc....if I felt bad it was television, sleep, computer, sleep. There was never a time I felt that I needed to have someone sit with me.
Good luck and know that we're here if you need us (((hugs)))
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Jenn - I did a lot of the television, sleep, computer, sleep
It took me awhile to adjust from being so active to being a lazy arse but hey......when you feel bad why make it worse by doing housework and cleaning?
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I would have someone with you for the first round of chemo. Get someone to stay for 4-5 days to see how you do. The first 3 days of chemo for me was relatively good but then on day 4-5 I kind of hit the wall...crashed. Slept a lot...slightly nauseated. It was really nice having someone there to fix me a bite to eat ...let my dog out etc. I defiitely would have been ok for the next chemo because I already knew what to expect but take the offer of a helping hand the first time. You won't be immobilzed but a little help is a good idea. Good luck and remember it's never as bad as we think it's going to be!
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I worked throughout chemo, and did everything else that I needed/wanted to do also. I wanted (and psychologically needed) to keep my life as normal as possible. Everyone has a different experience, but with the good anti-nausea drugs & more regulated doses than in the past where it was more of a 'one size fits all sort of thing', most people really find it yucky but manageable. Don't listen to any horror stories, and as suggested, cut anyone off who starts one (SIL sounds like someone you will want to stay away from!!!!). If you have friends who will bring you to/from chemo, bring you meals, volunteer to do errands for you etc. ABSOLUTELY take them up on it. If they ask if there's anything they can do, say yes there is, and tell them specially what you need. It will be helpful to you, and most people who REALLY want to help are glad to know what you want/need (and aren't going to tell you stupid worst case senario stories either). Best of Luck! Ruth
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Agree with ruthbru - I wanted to feel as normal as possible and for the most part did my normal activities. I worked through treatment, although I am self-employed and work from a home office, so that made it much easier. I also skiied practically every weekend throughout my chemo, did 2-3 mile walks and weight training. My SEs were minimal and manageable. Everyone's different, but I think only a tiny minority of women might need someone with them fulltime, and if then, for a few days only each treatment. You will be waaaay more comfortable at your own place anyway. Get them to come to you to help if you need it.
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I think the ladies who have responded offer some excellent advice! My daughter is a triple negative survivor and had A/C and Taxol. I was diagnosed HER2/nue 23 months after her and selected a research protocol treatment. My daughter and I reacted very differently to our chemo plans. Age makes some difference with A/C apparently. My daughter was 35 and had more unusual side effects. As much a doctors understand about statistics and side effects, for a patient it is a "first" experience. It's good to have someone you can call just incase you need help.
Even though my daughter had a difficult time in the beginning of treatment, once her scripts were altered and her A/C infusions were broken up and given separately she never missed a day of work. Yes, she was tired and a few days she did not work for 8 hours, but she made it through!
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Thank you everyone for taking time to respond. I feel much better now about my ability to make it through this!
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Keep us up on whats going on. You will get through it, and then be able to help others because of your experience. Best of Luck! Ruth
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I know that I could have done it alone, but I'm glad my husband was here. What would really have been great is if my grandmother (whom I loved) would have still been here to take care of me. I never would have wanted to go to someone else's house, but I would have liked someone I truly loved (like my grandmother) to come to me and take care of me. My husband did it as well as he could while he worked, but having my grandmother dote on me would have been so great. Also, my other advice is get a massage once a week. That made me feel so much better.
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And whatever else you like to do; do it as much as you can. I stuck to a (reduced) exercise schedule because that was important to me, and went out to coffee with my girlfriends (usually drinking 7 Up, because coffee didn't sound good), went to my kids concerts, sporting events etc.(leaving early if I needed to). I think it is good when you have other things going on, so you don't only think about all the cancer stuff all the time.
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Hope60,
You've been given some really good advice here. You don't need to move away from your home and your support network. You certainly don't ned any added stress right now. Like many others on these boards, I had a few bad days after each treatment, then my strength would start to return. I never threw up and was rarely nauseous. There was, however, one evening a few days after an A/C treatment that I was by myself. I got a fever of 101 degrees. I really should have called my onc or gone to the ER, but I was too out of it to do anything but lie there and sleep. Obviously I made it through that night, but it would have been smarter to have someone watching out for me just those few nights when I was so wiped out. Your doctor should be able to tell you when you are most likely to need help. Maybe you can ask a close friend to stay over on those nights.
Best to you. You can do this!
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I felt the same way -- decide you will handle this - I decided to take a portable DVD with me to all my chemo treatments ( I had triple negative so I was given very strong chemo). The movies I watched made the time go by and kept my mind off receiving the chemo. Noone else in the room had one. I felt the room full of people receiving chemo was sort of depressing so I concentrated on the movies. I did not have much naseau - If you have any, tell the nurses to give you something - I kept the pills handy and only used them a couple of times. The nurses are GREAT and provide support for you. I received my treatments in 2008/2009. I also had a sarcoma cancer tumor in my leg which was removed in 2007. My family has no history of cancer. I now walk with a limp, but am back playing golf. Your friends want to help - let them - go out to dinner, movies, etc. My last CT scans have been negative. Good luck to you and feel free to ask me anytthing. This support system can be your best friend for understanding and providing you support. Good luck - kathy
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Hi Hope,
I'm married (and was 58 in '07) ... but I was fully able to do everything I needed for myself, which included cooking for both of us. I didn't feel much like taking out the vacuum or washing floors, of course, and didn't. The first two days after chemo were generally ok, but when it kicked in on the 3rd day, it did stop me in my tracks. I was basically very quiet, and sat on the couch and sort of stared at the TV. A few days before the next round of chemo, I'd feel better again.
I found that focusing on simply getting through one day only at a time really helped --just put one foot in front of the other. Good luck in your treatment and full recovery.
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