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helen_anne's avatar
helen_anne
Member
14 years ago

Here's to my Journey!

Sunday 20th November 2011

Hi everyone

Again it's been a while...so much is happening its hard to keep up with daily blogs at the moment.   So sorry about that.  I shall try harder and do an entry EVERY day!

My surgery (lumptectomy) site has unfortunately become infected so I had to go and see my GP and have it cleaned up and dressed again.  He then prescribed some strong antibotics to help heal it.  That was on Tuesday and it's still infected so I'm not sure if my surgeon is going to go ahead with the next lot of surgery if it is still infected. 

I also went to see an oncologist at Peter MacCallum Box Hill on Thursday to discuss if I was a suitable candidate for Radiotherapy.  The staff there are fabulous and old friends of mine when I used to work there so I thought the whole appointment thing was really ironic!

After Tas (husband) and I listened and weighed up the pro's and con's we felt that it simply would not work.   And the oncologist who was fantastic agreed stating that if it had been her she wouldn't have proceeded with radiotherapy either but she let us decide first and tell her before she said that.

My skin condition means my skin is so delicate that constant radiotherapy would break down my skin so badly that it would not be worth it.

So it looks like Chemo will be the way to go and also a mastectomy.

Mind you once I make up my mind about something I just do it...no tooing or frooing with this little black duck!  Whereas my husband is a very typical Virgo - likes to analyse every single bloody alternative and THEN think about BEFORE making a decision!   Bless him but I just don't work that way!

I have made up my mind that a mastectomy is the way to go and my best possible chance to survive this and I really don't have a problem with it - it's not like I'm 20 or something.  But my husband wants me to talk to others out there who may have had this done - just to make sure I understand what I'm doing.

I understand his concern so I promised him I would ask in my blog if some of you out there may have had experience with this procedure.

I will be having a single mastectomy (well that's what I believe unless something changes dramatically) and I was wondering if anyone could send me some messages about how they felt once the procedure was done.   In particular I'm interested to know how you felt about yourself and how your partner reacted.

Tas says he will be ok although he did admit he thinks it will be a bit confronting at first.  He is always so supportive I know he will stick by me so I don't really have much to worry about but I am interested to hear other people's experiences.

I have been looking at images on the internet to know what to expect and having such an extensive medical background, scars etc don't bother me at all.  Also I've lived with scars all my life as part of my skin condition so it's really no difference.

I see my surgeon tomorrow and have heaps of questions to ask such as what type of mastectomy he would propose, how long is recovery and what support can I get to deal with it if I need to.

If anyone out there can suggest any questions please send them to me tonight!  (sorry for the late notice)

I have every faith in my surgeon and his team so I know he will do his utmost to try to do this in the most effective and less scaring way.

Aside from this I am pleased to say (and this may sound a bit weird) that I finally broke down in tears over this.  It took a DVD - The Secret Garden - to do it - but boy once the tears came - did THEY COME!!!  I love the book and just got a new version of the film (made about 15 years ago) by Walt Disney and it was truly fabulous and I just sooked and sooked!

I'm glad I did as I was really getting worried about my emotions as I hadn't yet cried but just seem to be approaching it almost like a task list.....(weird huh?).   I was beginning to think I had no emotion whatsoever about this but that changed on Tuesday afternoon when I watched the DVD.   A good cry does you wonders doesn't it girls???!!!

So there you are - basically I've decided to go ahead with a mastectomy and I'm seeing the surgeon tomorrow to find out when I'm in for surgery next.   Hopefully it will be soon and I can focus on recovery then.

Again I really hope that this finds everyone happy, well and positive....just remember Cancer can't take anything away from you UNLESS you allow it.....and as for me I'm NEVER going to allow it to take one single thing from my life.

Cheers and love to all

Helen

8 Replies

  • helen_anne's avatar
    helen_anne
    Member
    14 years ago

    Thank you Jane for your wonderful reply....I simply LOVE the idea of starting a gratitude diary and I'm definitely going to do that.  In my case I'm the eternal optimist (my husband is one of these anxious sorts) but I worked in the cancer field for three years so I'm very well prepared emotionally and understand all the terminology/procedures and pharmaceutical terminology so that's a distinct advantage.  In fact I find myself explaining everything to my husband, family and friends in more layman's terms so they understand what is happening.   I am really positive and know I can beat this so once I've come across a suitable phrase that reasonates with me - I'll make that my mantra too!   Thanks for the awesome ideas and reply.

    Luv H

  • Jrova's avatar
    Jrova
    Member
    14 years ago
    Yes, Tonya is spot on about doctoring the low cut tops. My mastectomy left me a bit concave, but all I really cared about was being cancer free. I must admit that even though I was relatively brave during the whole mastectomy, it was only because I was a complete sook the first time I was diagnosed in 2002 and I was a bit better prepared emotionally the second time around. I guess having teenage girls distracted me from focusing on myself too much, and I found that if they saw me happy, they were happy too. Also, my husband is the eternal optimist and he was as solid as a rock for me. He let me cry when I'd had enough, but then got me back on track and focusing on things other than my treatment. He has always said (during both lots of treatment) that breast cancer was just a bump in the road of our lives and not the sole focus of our lives. I had 14 lymph nodes removed in 2002 (they weren't doing the sentinel node back then) and I had some numbness and pain from that. I started swimming in a heated pool and that got the movement back in my shoulder fairly quickly. I hate being a patient and like to get back to 'normal' as soon as possible. I think taking one day at a time is a great way to go. I asked my oncologist right from the beginning to just tell me the basics and I trusted her to worry about all the medical stuff while I just focused on eating well, being kind to myself and enjoying life. I also started a gratitude diary to keep me focused on the good things. When I was feeling a bit down one day after my first diagnosis, and old Italian neighbour told me ' Don't die while you're still alive Jane!' That really resonated with me and kind of became my mantra. Sending you lots of positive vibes Helen. x Jane
  • helen_anne's avatar
    helen_anne
    Member
    14 years ago

    Hi Jane   Thanks for your message, I'm glad you had no pain from the mastectomy.  Just as a matter of interest did you have any lymph node involvement?  Unfortunately I do so not only do I have to have the mastectomy but I also have to have all my lymph nodes taken as well so I am expecting some pain as I was told today by the surgeon that I will have drain tubes etc.  Oh well them's the breaks!  I hope I make a quick recovery like you did.  Take care.  Luv H

  • helen_anne's avatar
    helen_anne
    Member
    14 years ago

    Thanks Chris for sharing you story with me.  I hope that I don't have to undergo a mastectomy on the right side but if I do I'll be looking to people like yourself for inspiration.  I'm glad that you and your husband are ok with all this too.  Good luck....luv H

  • helen_anne's avatar
    helen_anne
    Member
    14 years ago

    Thanks Tonya, particularly about the info on the emotional side of things....at least I won't feel nuts if I break down over a silly thing!

    cheers

    H

  • Jrova's avatar
    Jrova
    Member
    14 years ago
    Hi Helen, I had my mastectomy 3 months ago and have had no problems. I first had a lumpectomy in 2002 (with chemo, radiation and tamoxifen) when I was 34. Then in August this year, I got a new primary in the same breast. It was a relief to have the mastectomy; if I'd had one in 2002, I wouldn't be going through chemo again now! I have my last chemo this Wednesday, and then I'm planning to have a mastectomy on my healthy breast and reconstruction on both sides. I have no pain from the mastectomy, can sleep lying on my side and my husband isn't bothered at all. Sex is still great haha!! My teenage daughters are fascinated by the scar and don't find it confronting or weird. I was only in hospital for 2 nights, but could have easily gone home a day earlier. By the time I left, I wasn't even taking any painkillers. All in all, it didn't disrupt my life much at all, and I was driving again in less than a week. All the best with your next step. xx Jane
  • Chris's avatar
    Chris
    Member
    14 years ago
    Hi Helen, I had a lumpectomy last Decmeber, and then had to have more surgery to ensure clear margins. By this stage I had had time to think about all my options, and had decided I really didn't want to have radiotherapy. I decided that I wanted reconstruction at some stage and radiotherapy reduced my options. My first surgery was 6 days after diagnosis, so I was pushed along very quickly. I then had 3 weeks before my next surgery, so had time to think. My husband is very supportive, but he struggled with the idea of mastectomy at first, and he showed this by being angry with the doctor for changing his mind about whether my margins were clear. Once he got over this everything has been fine. I have never been embarrassed to be naked with him, and he has never made me feel uncomfortable at all. I had months to think about what I would do after chemo, and finally decided to have a propylactic mastectomy on the other side and start reconstruction. My husband's response to that decision was " well, thank goodness for that. He felt it was a no brainer to remove the other one, and he has been absolutely ok with the new me. I'm in the middle of having my tissue expanders inflated, and I've had one lot of emergency surgery 3 weeks after the mastectomy to remove a very large blood clot (800mls ). The expander on the old mastectomy site is going well, but the other one is still giving me a bit of grief. Both now have 400mls each, but the one that had the hematoma is still tender, and the muscle seems to spasm. Still, I have absolutely no regrets about having either mastectomy. I feel I have now given myself the best possible chance of not getting BC again. That's my story, and I hope that helps you a bit. Love Chris xx
  • Chris's avatar
    Chris
    Member
    14 years ago
    Hi Helen, I had a lumpectomy last Decmeber, and then had to have more surgery to ensure clear margins. By this stage I had had time to think about all my options, and had decided I really didn't want to have radiotherapy. I decided that I wanted reconstruction at some stage and radiotherapy reduced my options. My first surgery was 6 days after diagnosis, so I was pushed along very quickly. I then had 3 weeks before my next surgery, so had time to think. My husband is very supportive, but he struggled with the idea of mastectomy at first, and he showed this by being angry with the doctor for changing his mind about whether my margins were clear. Once he got over this everything has been fine. I have never been embarrassed to be naked with him, and he has never made me feel uncomfortable at all. I had months to think about what I would do after chemo, and finally decided to have a propylactic mastectomy on the other side and start reconstruction. My husband's response to that decision was " well, thank goodness for that. He felt it was a no brainer to remove the other one, and he has been absolutely ok with the new me. I'm in the middle of having my tissue expanders inflated, and I've had one lot of emergency surgery 3 weeks after the mastectomy to remove a very large blood clot (800mls ). The expander on the old mastectomy site is going well, but the other one is still giving me a bit of grief. Both now have 400mls each, but the one that had the hematoma is still tender, and the muscle seems to spasm. Still, I have absolutely no regrets about having either mastectomy. I feel I have now given myself the best possible chance of not getting BC again. That's my story, and I hope that helps you a bit. Love Chris xx