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strawberrykstrawberryk Member Posts: 25
edited September 2016 in Community news and events

this is my first post, have been reading some of the posts,you are all so supportive. this is my second diagnoses of cancer in 7 years and i did not realise this wonderful site was here, have just been trying to get by. i have had a masectomy and diep flap surgery and am now having chemo, have been having a few side effects, but have enjoyed a quiet xmas, hope you all have a great christmas

Comments

  • moira1moira1 Member Posts: 476
    edited March 2015

    Hi there and welcome to the club nobody wants to be a member of. Sorry to hear about your second diagnosis, as if once wasnt enough, but hopefully now you have found us, you will gain from it, there are all sorts of women on here who are going through, or have gone through the same as you are going through now. Have you registered for the my journey kit, or the hopes and hurdles kit, these are a fantastic packages, which has loads of great information that we can all understand, and of course it's free, so if you havent already registered for if, make sure you do. Hope your side effects get a bit easier, but please come back and let us know how you are doing, we always say here, by helping yourself you can help others. Take care moira

  • Julia44Julia44 Member Posts: 361
    edited March 2015

    Hi Strawberryk,

    Sorry to hear of your second disgnosis!  I am at the end of the active phase of treatment, having had 2 operations then a 3rd-with mastectomy, then chemo and radio.  I am about to commence on Tamoxifen.  I am interested to note you had DIEP surgery, as I am considering this I would appreciate hearing what you thought of this?  Also if you are in Sydney which surgeon you used.

    Best wishes for your treatment,

    Julia

  • Julia44Julia44 Member Posts: 361
    edited March 2015

    Hi Strawberryk,

    Sorry to hear of your second disgnosis!  I am at the end of the active phase of treatment, having had 2 operations then a 3rd-with mastectomy, then chemo and radio.  I am about to commence on Tamoxifen.  I am interested to note you had DIEP surgery, as I am considering this I would appreciate hearing what you thought of this?  Also if you are in Sydney which surgeon you used.

    Best wishes for your treatment,

    Julia

  • TonyaMTonyaM Member Posts: 2,623
    edited March 2015

    Welcome aboard.This site is like a little life raft -a safe haven in stormy seas. We have a similar history in that our bc  recurrence was 7 years later. You think you are home and hosed after that length of time don't you.Bit of a kick in the guts getting it again.I had my mastectomy and chemo mid 2010.I'm now on Tamoxifen.I'm undecided about reconstruction at this stage.I found chemo very hard and being bald over summer and having to wear stuff on my head was also hard.Life,for me,is going really well at the moment but I'm yet to feel confident in my health - might take awhile.Good luck with chemo- hope your next round is kinder to you.

                                         Tonya xx

  • strawberrykstrawberryk Member Posts: 25
    edited March 2015

    thanks for your advice Moira and Tonya, have been given the My Journey kit from the breast care nurse but have have very little time to go through it all, at the moment my reading is not all that good, the treatment is giving me blurry vision, so hard to read, i am almost bald and understand about feeling how hard it is, i am not using a wig this time, as it got very itchy last time, so have invested in a few scarves to try, am not able to work, so that helps with the wig side. How are you going on the tamoxifen? Am feeling a bit low some days, but others are okay, just very frustrating when i cannot finish simple things, but am going to keep trying, Kerri

  • strawberrykstrawberryk Member Posts: 25
    edited March 2015

    thanks for your advice Moira and Tonya, have been given the My Journey kit from the breast care nurse but have have very little time to go through it all, at the moment my reading is not all that good, the treatment is giving me blurry vision, so hard to read, i am almost bald and understand about feeling how hard it is, i am not using a wig this time, as it got very itchy last time, so have invested in a few scarves to try, am not able to work, so that helps with the wig side. How are you going on the tamoxifen? Am feeling a bit low some days, but others are okay, just very frustrating when i cannot finish simple things, but am going to keep trying, Kerri

  • TonyaMTonyaM Member Posts: 2,623
    edited March 2015

    I think having chemo messes with your head and emotions.It's normal to have low days and don't worry about finishing things,just rest.How much longer do you have with chemo? I'm tolerating Tamoxifen - just!

                                                Tonya xx

  • strawberrykstrawberryk Member Posts: 25
    edited March 2015

    Have just had my third dose last week on the 17th, ended up in hospital after both of the last 2 doses, very low white cell count , reactions and cluster headaches, took over a week to get on top of the cluster headaches, so had to  take strong pain killers, left me very teary and unable to see very cearly. Have one more chemo to go, but not sure until i speak with the oncologist if it will go ahead, due to reactios, also reacted to the herceptin slighty, heart racing, left breathless, but second lot was not as bad. Am getting cracks on my lip edges all the time, so hard to eat, not sure other than putting lip balm on what to do, how long do you have to go on Tamoxifen?

  • TonyaMTonyaM Member Posts: 2,623
    edited March 2015

    Sorry to hear you've had such a bad time with chemo.Like you,I ended up in hospital with next to no white cells and an infection.I didn't think I'd get out alive! I didn't go back for more chemo after that-even my oncologist was ok with my decision.I'm on Tamoxifen for 5 years- have had 18mths worth so far. I see my oncologist next week for a checkup and I hope he doesn't change it. I had a shocking headache with chemo too.Are you having Taxotere? You poor thing,you are getting alot of awful side effects-bet you'd like to just hide under a rock! Hope you feel better soon.

                                   Tonya xx

  • TonyaMTonyaM Member Posts: 2,623
    edited March 2015

    Sorry to hear you've had such a bad time with chemo.Like you,I ended up in hospital with next to no white cells and an infection.I didn't think I'd get out alive! I didn't go back for more chemo after that-even my oncologist was ok with my decision.I'm on Tamoxifen for 5 years- have had 18mths worth so far. I see my oncologist next week for a checkup and I hope he doesn't change it. I had a shocking headache with chemo too.Are you having Taxotere? You poor thing,you are getting alot of awful side effects-bet you'd like to just hide under a rock! Hope you feel better soon.

                                   Tonya xx

  • strawberrykstrawberryk Member Posts: 25
    edited March 2015

    Yes it is taxotere i am on, i did get an infection of the lungs, had 21/2 weeks of antibiotics, got thrush, so endless things for side effects, but hopefully all good now, just still minor headaches and body aches.Tonya did you have taxotere as well? would love to hide under a rock, at the moment anywhere cool would be good, where do you live? Am not to confident of continuing with the chemo, the whole family are not coping, let alone none of us are sleeping very well, try to keep to a normal routine, but does not really work and school is back next week, so hope my daughter does okay, as she is in year 12 with a lot of studies and my treatment is having an effect, heres hoping, Kerri

  • TonyaMTonyaM Member Posts: 2,623
    edited March 2015

    Yes I had the dreaded Taxotere.I didn't have any cancer in my lymph nodes(2003 full node clearance) and my body/bone scans were clear(2010) so chemo was just to be sure.My b cancer was eostrogen+ve and hercept -ve so my oncologist said Tamoxifen would be of more benefit to me than chemo anyway.That's why I felt confident to stop the chemo. I live in Sydney and it's very humid at the moment but my hot flushes are tolerable with Endep. I can sympathize with you having a daughter about to do her HSC. My youngest daughter had to do hers with my first bout of breast cancer.My treatment was over by  October so that helped.Ididn't have chemo the first time just radiation so was able to stay "myself"and that helped too.Anyway,she really focused during the hsc and got a fabulous result. Hopefully you'll be well and truly over the worst soon and can get back to being "normal"mum,(or close to it!)

                                        Tonya xx

  • strawberrykstrawberryk Member Posts: 25
    edited March 2015

    Dee think i did the same thing. hid a lot from the kids, tried to be positive, but all are older and notice more, my daughter has spoken with the teachers and i have emailed, but it seems that some comments by teachers when she is having trouble upset her very easily. Only last night she rang from school in tears, very hard for me to know what to do? some of the girls at school are giving her a hard time which does not help, but will ask about the form, am waiting for the school to ring me back, am on the count down, have 14 more herceptin rounds to go, did not have last chemo, to many side affects and fluid is very bad, am very wheezy and congested and no feeling in finger tips, hope you are travelling well, Kerri

  • DeeayDeeay Member Posts: 278
    edited March 2015
    Kerri
    I can't believe girls at your daughter's school are giving her a hard time! Hopefully her friends are being supportive. Is there a school counsellor or student welfare teacher you or your daughter (or both!) could talk to? It's so hard.

    My youngest daughter is more sensitive than the other so I did share differently with them. I tried to more cheery and positive with her. We talked a lot about what her concerns were so I could reassure her I was ok. It also helped her seeing me look well (even when not feeling it) and being proactive with my diet and now exercise. Took a good 3 months to get energy back after chemo. I'm only just starting to get hair again too.

    It's a long road. I'm sorry you're doing it tough. Keep on talking with your daughter. Good luck!
    Diane
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