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sw2012's avatar
sw2012
Member
10 years ago

Ouch

Think it's 3 weeks post bilateral mastectomy - it's all a blur - and I am finding it a bit hard now to keep up the happy smiling face for everyone, including myself.  My arm is sore, feels like a burn but I know it's the nerves all reconnecting and it might last a while, but it hurts and is annoying all the time.  I've also got cording and i think today it's gone down towards my wrist.  My chest is sore too, and feels tight.  I'm doing my physio exercises religiously and giving myself lots of massage but I feel like it's getting nowhere.   I have another physio appt on Tuesday, hopefully she will tell me I've improved in the week, cos it feels like I've gone backwards.  I've been lucky enough to have been pretty healthy my whole life, and only surgery I ever had a c-section for my twins, so I'm new to all this and not at all patient,(or a good patient) so i don't think I'm handling it too well. 

And the coming week is full of scans before my chemo starts next Monday.  4 bouts 3 weeks apart of AC, then 12 weekly sessions of Paclitaxel - sounds like its a popular treatment.  I'm nervous about it, I know everyone handles it differently so I'll just have to see how I go with it.  I've got some  tummy troubles, and get easily constipated, so goodness knows what's going to happen there.  I want to get started with it, cos the sooner I start the sooner it finishes, and I'll also learn how it's going to affect me but still worried and scared and still can't believe it's all happening. 

Chemo was always talked about for me - I'm low risk but had one tumor of a reasonable size and cancer in 2 lymph nodes, so it's been recommended to catch any microscopic bits of the crap that may have possibly gotten through.  The technology isn't really there yet, is it - one day there will be a machine that will do a full body scan that will pick up any of these microscopic bits and then we will know whether we need to do chemo or not.  But till then, it's like "There may not be any more cancer in you, but just in case, lets pretend there is and blast it."  One raduim oncologist has now also recommended radium after chemo, but I'm getting advice from others that it won't be necessary, so I'll be getting more opinions on that.  If I don't get raduim, chemo will finish in November so I'll be good for Christmas, I'm sure!

It just gets yucky sometimes.....  I'm sure I'll feel better tomorrow - or the next day....

Sending very positive vibes and healthy wishes out to everyone.  Hope you had a great weekend.  Donnax

9 Replies

  • Hi Donna,

    I'm going to tell you what a girlfriend who is a breast cancer survivor told me when I was nervous about the treatment ahead. She said, "I think you'll cope with chemo a lot better than you think." She was right.

    My hot tip for you is to drink LOTS of water especially on your chemo days.

    Last year I had a sentinel node biopsy, followed by a lumpectomy, six months worth of chemo (AC and Taxol) delivered 'dose dense' over 15 weeks, 6 weeks of daily radiation then I rounded out the year with a December bi-lateral mastectomy and immediate DIEP Flap (tummy tuck) reconstruction. I'm also just two doses away from completing a year's worth of 3 weekly infusions of Herceptin. Woohoo!

    I have cording in my right arm that comes and goes. The more I exercise the freer my arm feels. My new breasts felt very weird to start with. My chest felt like I was wearing the tightest bra ever when I was braless, but now I feel more like me as each month passes. In fact, I feel pretty fantastic right now. It just takes time and a positive attitude.

    Be kind to yourself. Rest when your body tells you it needs it and look forward to getting off this merry-go-round by Christmas 2016.

     

    Good luck!

  • Hi, take it easy on yourself. It's only been 3 weeks and it will take awhile for your body to heal from surgery. I had a mastectomy in November....and had cording. It was quite painful at the beginning and went down to my wrist. With physio help and some laser, it's now manageable but I am still dealing with it (6 months later!).

    Don't push yourself too much with all your chemo ahead of you. I've just finished chemo and radiotherapy and you really do sometimes just need to take it a day at a time. You'll sort your cording out in time and you'll get your body back to how it is supposed to feel....but for now, just keep yourself focused on preparing yourself for chemo next week. 

    If you already think you are going to have tummy issues, make sure you get something to help you through that. Whilst I got all my drugs from the oncologist, I also went to see my GP (who works in an integrated practice with nutritionist and naturopath etc) and we got a plan together for other things to help support my body through each stage of the treatment. If you have a good GP, I think they can really help to look at the bigger picture.

     

     

  • Hi Donna,  I also have only had two surgeries, C section for twins and lumpectomy and lymph nodes for BC.  I have never really been sick so this was a whole new world for me, I apparently have a high pain tolerance so the surgery was not too bad for me.  The chemo on the other hand presented all sorts of problems and the first two were about trying to find medications etc. that worked for me so I could continue to work and live a relatively normal existance whilst being poisoned!.  I did get netropenia and ended up in hospital for two days, but there is now an injection that stops this happening which I had for the remainder of the chemo. There are lots of medications for nausea and you need to try to find the one that works for you, I used Motilium. There are also ginger lollies for car sickness that work well for nausea as does anything ginger.  I also used to take Degas for a couple of days after each does to get rid of the bloating, this is at the chemist  There are laxatives and gastrostop available.  Most of the side effects can be controlled.  I wasn't keen initially to take too many drugs but they work so why not. Everybody is different in how they react to the treatments, don't think you're a sook because we all feel like that at some stage but to outsiders we just look very brave. All the best with the rest of your treatment.

    Tracey

  • Hi Donna,

    I haven't started anything yet just parked in waiting mode for my surgery and then find out if I will have radiation. Have been told I will definitely have chemo. So I have no experience of any sort to offer except if you personally need to let your smile slip and you need to let out your feelings of anxiety, frustration and just being plain scared and over it -  DO IT!!! It is just sooooo much to deal with!! You sound like your doing magnificently with your exercises so keep up the fantastic work cause that next lot could be the ones that relax the tissues. Wishing you all the best. Xx Cath

  • Hey, I'm sorry to hear you're so sore. I'm in week four post Bilateral Mastectomy with no recon recovery and most days I feel an improvement every day. Some days I slip back a bit, but I stop what I'm doing and do what I'm told instead and I feel better again the next day. Just taking  paracetemol. 

    I meet my chemo guy this week, so I thought I might spice it up by getting a cold. Fingers crossed he doesn't put off my chemo. 

    My chest feels tight most of the time, but I used to have a horrible burning feeling in my armpits and that's gone now. So grateful! 

    I'm really hopeful for your recovery, Donna. I'll be watching to see how you go. 

    Keiley xo

  • It's  normal to feel a bit miserable after surgery and the fear of the unknown. We are all different and some people breeze through chemo. I've  just finished AC and found I was exhausted most if it. But I never went to hospital, never had a mouth infection, just had sore eyes for a week in the last cycle. I had some unpleasant side effects like gas and bloating and farting, it made me miserable but it was 1 week for 4 cycles. Try not to overthink, I know easier said than done. Keep up the exercises, it will improve if you do...and the physio can help with other things if it doesn't. Kath.

  • It will take a long time to heal from surgery. Even now since my surgeries in November and December I need to keep up the exercising or it all pulls tight again. Some spots like under the arm just stay numb so be careful and gentle cleaning and drying there. Rest up for now and chemo will start soon enough and the next step in treatment will be with you. Just take that day by day and you will get through.

  • Hi Donna

    Can understand your worry about the unknown. I was where you are a few months ago. Bilateral mastectomy. Cancer in 2 nodes. Stage 3 , grade 3.

    6 mths chemo all up.

    I was told the same, there could be microscopic cancer cells. Hense being blasted.

    No radiation due to double mastectomy and only 2 nodes involved. Was happy about that. Yahoo

    My tummy is still giving me grief. First month constipation and diarrhea ever since. And when I have to go its running to the loo. 

    Makes it very difficult to go out.

    Good luck with your treatment.

    Day at a time x

    Hugs Airlie ?? ?? 

  • Hi Donna,

    As you said we all react differently to chemo but AC does play with your tummy so if you do get contipation it is a good idea to take a movicol the day of treatmwnt as that first bowel movement after the Chemo can be an ansolite nightmare afterwards... And do keep them handy in case you need them in the initial few days.

    Be very gentle with your tummy and modify diet accordingly as, at some stage it seems everyone hits a bout of runs too.

    I made a mistake of having a very high fibre diet the first week and it seems to have irritated my gut badly in combination with the chemo toxins so really suffered for it day 9.

    Walking helps keep nausea under control the initial 24 hours post chemo being aadmonistere. For some reason gas becomes and issue and walking will help bind that gas make you burp which provides relief from nausea.

    All in all, you will do well - just listen to your body and be kind to yourself. Also, may sound weird to say it now but do have someone supervise your meds taking the initial 3 days as your brain will not function well. It will make it cloudy and kind of make you think about everything 4+ times and still easy to make a mistake. It does clear after few days though ??.

    And do not forget a lot of us have been posting about our AC experiences so you can always look up old posts and do not forget this is a great community. I have learned a lot and found a lot of help and valuable advice every time I posted any questions. 

    All the best with your first session

    Hugs

    Jel.