So yeah. I've just signed up to BCNA online group thingies. It's a bit baffling to navigate (I'm used to more standard bulletin board type forums) but I guess I'll work it out eventually. I'm reasonably unfussed about the whole cancer diagnosis. It's still a bit weird and definitely not part of my personal identity. Surgery was ok. I have some post-operative pain but I can mostly ignore it so I don't really care. I was actually in a good frame of mind, enjoying life in the lull between surgery and chemo. And now chemo has started and it sucks. I know you're not supposed to get nausea on FEC with all the drugs they give you but I did, and still have nausea. Eating is a chore. I kind of just want to sleep away the next 4 months til it's over. It's no fun at all. And I have no idea how to find others like me. Argh! Breast cancer support is baffling and hidden. I have other health issues (one of them also quite serious and more full on than breast cancer to deal with) and it's SO easy to find others going through what you're going through. Anyway, this is a fuzzy rant about chemo and nothing in particular. Still hoping to find a home of like-minded people to get me through the next 6 months, but maybe it won't happen.

Chemo is bloody awful, I struggled with nausea too on FEC even with all the drugs. And I agree if only we could sleep through it all I have said that on occasion myself! For me it takes a full seven days to feel ok again but then I do start to feel better and know that I can go on. I often just read what's happening on here so that I don't feel so alone. Everyones experience is quite different hopefully you will find people to connect with to help you though. Good luck!

Hi there, chemo is definitely not my idea of fun either! I didn't have FEC but had Taxotere and Carboplatin alongside Herceptin every three weeks, and for about half the cycle was feeling pretty much like you but was almost human again for the last week and able to get out and about (even just to spend some time in the garden) which definitely helped the cabin fever. This site is good for making connections with others no matter where you live, and I hope it helps you. Feel free to ask questions, vent, let us know how you're going or just read others' posts about their experiences as these can help you feel less alone. A couple of other thoughts; have you talked to your breast care nurse about wanting to meet up with others in your area, they might be able to make some suggestions? I met some others going through treatment when I attended the Look Good Feel Better workshop and Encore exercise programs when they were happening in my area - just google either one for details on upcoming dates / locations. Depending on where you are, there might also be a BCNA support group in your area so just search through the Groups section. Best of luck with your treatment. Hopefully the next chemo cycle will be a bit kinder on you. Jane xx

I was really nauseous with FEC for at least 3 days per treatment, despite anti nausea medications. My mouth dried up and I needed water sips to wash down any sign of food. I was really dizzy for about 5 days after treatment, but it subsided and was much better after that until the next chemo. Yes it does suck, but I got through it one treatment at a time. Take good care of you, and rest up. We're all with you along the way, Trace ????

Yeah, as has been said, chemo sucks, but take it one treatment at a time. I've finished FEC, and have my second cycle of docetaxel tomorrow. I'm so not excited about that!!! I found with FEC, 1st cycle I got a migraine almost immediately treatment finished, & wrote me off for. 24-36 hours. abdo cramps & diarrhoea started day 3. Nausea kicked in around then too, although I'd been off food from the start. 2nd & 3rd cycles I was on top of the migraine, which improved the first few days, then the cramps, diarrhoea & nausea, for about a week. The last week I improved again, and felt almost normal. Have ordered & received your "My Journey" kit? It's worth dipping in & out of. Also, if the nausea is bad, get in touch with your treatment team, they may be able to give you something extra. I received some ampules of maxalon, & was referred to my local community health nurses, & could ring any time of day to have an injection given. Did anything like this happen for you? If so, it sounds like it would be worth making that call and seeing if they can come to you. hope it all settles soon Lyn

Hi Eaglelily, yes,chemo is the pits and my first round sent me to hospital on death's door! Perhaps your dose needs readjusting? Write a dailly diary so you can let your oncologist know your side effects -shouldn't have to suffer so much. This network used to have an easy format to navigate and recently they changed it all and I find it very difficult.I can't find anything! Perhaps a support group in your area might be helpful? Keep blogging here cos this is a great network for support and information. We know what you are going through and you won't feel so alone. Tonya xx

Chemo. Not as fun as you'd might think.

16 Replies

Janet_A
Member
8 years ago

EagleLily said:

Thanks! Yes, I've spoken with one of the breast care nurses, but the type of person I want to find (breast cancer plus a very particular type of health condition) is fairly rare, so I'm not optimistic. So at this stage I'll settle on finding childless women in their forties :) I've met a few local breast cancer survivors who are lovely but they're all at retirement age and all have kids so while they are so nice and supoortive, our lives are quite different.

I'm finding the BCNA groups baffling to search through. Is there an idiot's guide to navigating the groups, messages etc somewhere? I'm lost :)
Hi Eaglelily, its been a while since you posted, did you find what you were looking for? I am doing a personal study on childless women with breast cancer and the lack of support we receive. Cheers Janet
Gillian2069
Member
10 years ago
Hi Lily,

I had 9 weekly doses of docetaxol after three months of AC. The docetaxol was a breeze compared with AC - so maybe you can hope for an easier time with it.

Docetaxol made me tired but I could still do my daily walk. I got peripheral neuropathy after week 7 and treatment was stopped after week 9 so that I didn't get permanent nerve damage. Nearly four months later and my fingers are still a bit numb so I'm glad we stopped when we did.

One day at a time, and then hey presto, it's in the rear view mirror!

Gillian
maryroset1
Member
10 years ago
Hi there. I had fec and taxotere. I was lucky i guess with fec only bad heartburn and was put on medication. Try salted potato chips seemed to work for me when i felt queesy. Taxotere was much worse felt incredibly weak and just wanted to sleep but all this hit me about 5 days after treatment. Good luck with it all and hope you start to feel better aoon.
lrb_03
Member
10 years ago
You mentioned looking for women late 30's to early forties, maybe without kids. I don't quite fit the age group, being late forties, but I don't have kids. If you want to pm me, that's fine.

Lyn
EagleLily
Member
10 years ago
Thanks, Ann-Marie. I think I've scrolled through all of the groups now individually. I was looking for a late 30s/early 40s group of women but only found small, inactive groups. Nevermind, I do have a reasonable support system in real life, and know a couple of people who've gone through chemo, so it's all good :)
Ann-Marie
Member
10 years ago
Hi Eaglelily,

I just wanted to jump in on this blog to offer some advice around the online group thingies :)

My name is Ann-Marie and I am part of the BCNA online team.

If you click on Groups you will be taken to a page with all of the groups available on the Online Network (there are many). You can search for what you are looking for in the Keywords.

Some of our groups are private and some public.

Click on the group you are wanting to join and then click on the Join button. If the group is private a request will be sent to the facilitator of that group to approve.

Let me know if this helps you find what you are looking for.

~Ann-Marie
EagleLily
Member
10 years ago
Thanks, yeah, I will try to remember to tell the oncologist next week how crappy I felt. Dunno if they will be able to do much but its worth asking.
EagleLily
Member
10 years ago
Yeah, I have 3 cycles of D after the FEC. NOT looking forward to it at all.

I did call the community nurse on day 1 and had a maxalon injection but it didn't do much - just stopped the retching enough so I could eat my dinner on day 1 (I had to eat dinner for some medications I'm on - unrelated to breast cancer stuff). So I gave up on that.

I went in to the chemo ward the day after I had the chemo and was essentially told I shouldn't have any nausea with the huge amount of drugs I was given and maybe it was just the expectation of getting nausea that caused the nausea (because I had post operative nausea and vomiting a month earlier and associated it with being in hospital for chemo or something? I dunno). I was given benzos which kind of helped but I've read about the withdrawal symptoms (scary!) so now I'm just drinking lots of ginger flavoured stuff. Nausea has eased enough that I didn't even bother with maxalon this morning with breakfast.

I'm hoping the next 2 weeks before the next cycle don't have much nausea. If I'm tired and dizzy, that's fine - I can cope with that.
EagleLily
Member
10 years ago
Thanks! Yeah, the nausea is gross and it feels different to other types of nausea. Post-operative nausea (plus vomiting) was much easier to cope with than this, and I had 2 weeks of nasuea post surgery and I was much happier than this!
EagleLily
Member
10 years ago
Thanks! Yes, I've spoken with one of the breast care nurses, but the type of person I want to find (breast cancer plus a very particular type of health condition) is fairly rare, so I'm not optimistic. So at this stage I'll settle on finding childless women in their forties :) I've met a few local breast cancer survivors who are lovely but they're all at retirement age and all have kids so while they are so nice and supoortive, our lives are quite different.

I'm finding the BCNA groups baffling to search through. Is there an idiot's guide to navigating the groups, messages etc somewhere? I'm lost :)