I don’t usually post here but getting a little apprehensive and would like some advice from anyone who has gone through this chemo treatment. I’ve been great up until now, then the date arrived for the chemo to start and I just can’t get it out of my head. What can I truly expect, does everyone loss their hair, can I expect it to floor me and if so how long does it usually last? I was hoping to carry on working but as I work in a large office and with it being winter round the corner have been advised it wouldn’t be a good idea. It just seems I’m losing control of my life sorry just feeling sorry for myself. I think I just need to know what most people go through so that I can mentally get myself prepared and then I’LL be fine. My regime will start 15th Sept so anyone else starting then I would appreciate sharing our journey
Hello Icequeen, Welcome and I’m sorry you’ve had to join us.
I hope you’ll find this thread supportive - I have.
My own experience (i am in my last cycle now) has been that although chemo is not pleaseant, its definitely doable, and not as bad as I had feared. I read too many scary stories I think and the reality has not been anywhere as bad, for me. Every individual does have their own response though.
The Epirubicin is harsher than the CMF, but its over fairly soon whereas the CMF is for 4 months and that seems a long haul when you start.
The tips elsewhere on this site about how best to survive chemo are useful. In particular I drank loads of water the day before treatment and on the day. I just rested when I needed to for a couple of days to a week after each treatment. I wasn’t sick till the 3rd cycle as it tends to accumulate. Then I was sick but just once each time, for 2 cycles.
However after the first few days are over each time, I found I was able to keep active - I decided to stop working as I was worried about immunity issues and I wanted to give myslef the best possible chance I could to deal with all this. For me this has been the right decision but I know some women prefer to work, or indeed don’t have a sick pay scheme that allows them to stop for a while. You will not be able to work in the week following treatment I’d suggest as you will prob not be up to it and need to rest.
For me I have kept busy with gentle activities I enjoy eg gardening, cooking, looking after family and house issues, reading a lot, watching Filns on DVDs on tired days etc etc. Friends and neighbours have been very supportive so I’ve had a better social life than usual! People have helped me with lifts to treatment, occasionally bringing round soup, flapjack or just coming round to see me and have a chat. I have found this really positive and you need to ask for help when you need it as people really do want to help but don’t know what to offer. I asked people for help with lfts, and also sometimes just to come out for a wlk with me. I have tried to walk as much as possible - just 30-60 minutes as this helped me to manage sicky feelings, and to boost my morale. I don’t go swimming as I’m worried about the bugs in local pool while my immunity is compromised.
So you have to take each treatment as it comes and do take someone with you. The nurses are very good and explain fully what will be happening.
My worst problem was that I have poor veins so after 3 operations and an infection and the Epirubicin treatments it becmae really difficult to put the cannula in. I then had a PICC line inserted and for me this has been brilliant. So if you fidn you have vein problems I’d really recommend that you ask about a PICC line - best thing I have done in terms of the last 4 months of treatment! It has taken the stress out of it for me. However lots of people seem to manage ith cannulas so again, this is individual.
I hope this helps you a bit. Chemo is scary befopre you start and I know I cried at the briefing, but its manageable. Do tell the nurses and/or your BCN how you are feeling as they really want to help.
Good luck and don’t hesitiate to ask any questions on here. Whcih hospital are you at by the way. I’m at Clatterbridge and Warrington, in the North West.
Sandripples
Thank you so much for your post and help Sandripples. I,m at Shrewsbury Hospital for my Chemo. I have to have Epirubicin every three weeks for 4 cycles then the 1xCMF three week break and do it all again. i do get paid to be off for six months so that side of things isnt to bad, and luckly since the op I have found I have a supper bunch of friends at work who have already said we could go walks together etc. My neighbours has offered me lifts and shopping if I need it. My hubby went to bits when I first got the results, me well I do what I always do just got on with things, my biggest problem is telling anyone how I really feel, this espically includes my husband, son and daughter in law. So smile on face to the world no matter what, is me. I think this forum is a god send, I can ask the things I need to know and know someone else has been there.
Its the unknown I think and Im so well, Ive never been really sick ever. Like yourself I have heard some terrible stories which hasnt helped. Sometimes people who havent been through it dont realise there not helping telling you some things. Everyone on here is so brave and have been through worse than me, I just feel so out of control my mind is just buzzing. I’m sure when I get the 1st lot like yourself I’ll be okay.
Thank you again so much you dont know how much you have helped. I’m off to print the tips off now so I have them at hand.
Icequeen, I’m glad my comments helped. I had verty good advice from a freind who’d been through treatment. She simply said that the ability not to panic is a great asset. Not panicking can be easier siad than done but I have found its true that I have to take one step at a time and I decided after the first 2-3 weeks of terrifying awful worries that I’d work on the assumption that the treatment would work. I know this is not entirely logical as only time will tell. But I do know a number of women who’ve been through this and come out well on the other side, and I also know the odds are good. So I focus on that.
I also found I had to steel myself to get through the chemo - its enough to deal without thinking ponger term, if you see what I mena. So just take one treatment at a time, be prepared in case you feel soick and/or exhausted, but don’t be terrified as for most people its manageable. Just rest when your body tells you to do so. I sometimes just relax in bed and tell myslef ’ I don’t need to do anything except rest- its the only thing that counts at the moment and in a couple of days I’ll feel better’.
I agree that telling prople is really hard, by the way. I think its because each time you tell someone you are confronting the turth again yourself. I staged telling various gourps of people, as I coldn’t do it all at the same time. Just wrote most Xmas cards as normal last year as I wasn’t ready to share the news! But I gradually told most people and it was then easier once they knew. I’m glad you’ve got good suport too.
Once again, good luck.
Sandripples
Hi there Icequeen
Sorry you have had to join this exclusive club - but i have found this site to be invaluable for information, letting off steam, sharing worries, asking for advice and everything inbetween. Like Sandripples i have undergone the chemo regime E-CMF. I started in January and finished mid July, had 4 weeks of rads and am now about to go back to work. It all seems very daunting and frightening to start with but as sandripples says it is doable. When i was first diagnosed back in November 09, i dreaded the thought of chemo and then in january after 2 lumpectomys i was there about to start worried beyond belief. But my worry was based on fear of the unknown - everybody on here was so supportive and said not to worry it just made it all seem so much more manageable. I tried to cold cap in an attempt to save my hair. It doesn’t work for everyone and it didn’t work for me, but at least i gave it a go.
Just take every day as it comes, rest if and when you can, eat what you fancy when you fancy it. One day i just ate a peach as that was all i fancied. I am blessed with a great family and mates who have been with me all the way. I have always tried to be positive around the kids ( 11 and 14 ) and my parents ( who are quite elderly ) but sometimes this isn’t easy. This is the first time most people in my social group have been touched directly by BC. I vividly remember telling certain people and have kept a journal to reflect the ups ( and there are many ups ) and downs through it all. Some people even do a blog ( bit beyond me - that one )
It took me some time to get my head around all of this business. Once i had locked it in my brain i was fine with why i was going through all of this - but it wasn’t easy in the weeks inbetween, but then as i look back now - they are only memories of what has passed by. It will all pass and just be a memory.
Good luck
Wendy
x
Thanks so much for your post Wendy, It had to hard going through this with two young children. At least mine are grown up with children of their own. I wonder what my eldest grandaughter will think if I loss my hair as she is forever playing with it. Today is what I call the real start of my journey as going before work to have my bloods taken, tomorrow is the chemo unit tour, tuesday the wig fitting and then Wednesday the chemo. I print off the list of help items and have already got some in just in case. For this week anyway I feel normal as I’m working long hours at work so too exhausted and night to worry. As you say its the unknown thats frightening. I’ll get through it everyone else has and it needs to be done. I’ll get more envoled with the threads when it all gets underway and hopefully I can help someone like you both have helped me. Its just great that this site is here and everyone can help one another. I’ll let you all know how I go on Tuesday. I so glad its nearly all over for you and now you can enjoy just being mum to the boys and not mum to the boys and having to deal with threatment as well. I dont know about you but this has changed how I think of life and for the better I think.
Icequeen - how did you get on? Hope you’re not feeling too bad. I found it takook a week to ‘come up’ after the Epirubicin, but it was better after 2 days, then slowly improving.
I had my last IV chemo on Friday. I also had my Picc line taken out - totally painless. Its been great haviong that central line. Has saved me a lot of stress in the last 3-4 months.
After the treatment I felt very emotional that it was over and wept over the kind nurses for 5-10 minutes. Such a relief to be nearly at the end. Just 6 more days of the chemo tablets to get through.
Yes having this does make you think about things differently.
Best wishes and hugs.
Icequeen - how’d you get on? I found it abit daunting afterwards taking a tablet for this, a tablet for that. But trust me i took them all !!I agree with Sandripples it took about a week or so to get on an even keel afterwards and by the third week i felt well enough to go out and have lunch with friends !
Sandripples - I found having the hickman line was such a relief as well. Very liberating when it came out not to have this thing dangling from my chest. I found finishing chemo to be a bit of an anti climax no tears or shouting from the roof tops( my mates were more excited than me ) it was finishing the rads that overwhelmed me. Hope the last few days of tablet taking goes well. All these events are milestones for getting through all of this. I can remember them all quite vividly.
Keep well
Wendy
x
Hi WEndy, did you have rads after chemo? I had my rads during chemo so have got them over. So perhaps the removal of line and last IV was the last stage of current treatment, as perhaps your rads were for you, if you see what I mean? Just depends what order you have things in.
Yes, liberating to be able to shower and its marvellous how the little exit wound healed up immediately.
Anyway, 4 more days of tablets then recovery (and Tamoxifen…)
All the best.
I go tomorrow for my 1st lot of E. Went round the chemo unit on Wednesday and it didn’t look Iike I expected. The nurse was lovely. She explained all the procedure and as I’m having Hercptin explained I would be coming to the unit for the next year and a half so it would be like my second home by the time I’m finished. Had my wig fitting today, my hair is below my shoulders at the moment but I choose a shorter one. The wig really didn’t look like a wig, I was so surprised. I will be on here tomorrow to let you all know how I’ve got on.
Good luck Icequeen, let us know how you get on. xx
Am at the Doctors tomorrow for my very last sick note before going back to work, if it all goes to plan. 44 weeks seems an age, but it has flown by. It will soon pass Icequeen i can vividly remember being where you are now, and never once thought about being at the stage i am now. Take each day as it comes, once you get into a routine of knowing good and not so good days with each treatment you will feel more in control.
Sandripples - only 3 more days to go. I know the utter joy of the countdown. xx
Hi pearlsox, Glad to hear its nearly all in the past for you now, it must feel great to back to normality ie work. It’s been along 44 weeks for you, all the best of luck for your 1st day back at work. I haven’t even worked out the weeks yet just know its 61/2 mths.
I’ve been awake from 3 this morning just not tried, tip toeing around till 7:30, then I can have a nice soak in the bath before going to the chemo unit. Didn’t think I would feel so apprehensive about it all, but 1st one will be over soon. Silly really, I’ll probably zonk out this afternoon and wonder what all the fuss was about like the rest of you on here.