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Mich_x's avatar
Mich_x
Member
12 years ago

UPDATE ON THE ALIEN

Hey my Luvlies

Have you missed me hahahahaha.  I feel very neglectful as I have not been on the site much lately.  As one other luvly lady put it life consumed me.

For those who don't know me because you are new. I have been around for about 2 1/2 years and my road trip continues unfortunately. No just getting BC, have surgery then treatment, pop your pill for 5 years and off you go get on with your life for me.  I have been given a second diagnosis of post radiotherapy Morphea.  It is extremely rare so I am very special and I call my manky boob - my Alien.  He just sits there on my body but he isn't really a part of my body.  Anyone who is a part of the breast reconstruction group are able to view the Alien on a post I put up called post radiotherapy morphea I think . 

Update on the Alien is that I have had my first fat grafting (I call it liposuction and botox) end of December with little change reported when I visited the Plastic surgeon recently in March this year.

My commitment of the 6 weeks of hyperbaric chamber every day for 2hours a day obviously did little for my Alien. 

I will be having a second fat grafting middle of May as I am going to Bali with my brother inlaw who has had a stroke and us 3 sisters and partners are going to take him over there to see his brother. The Surgeon prefers waiting so I don't go over there with any open wounds etc.  Plus it took me a good 3 months to feel "well" again after the first procedure.  Might have something to do with all the other procedures I had prior to the fat grafting where the Breast Centre were trying to rule out recurrence or inflammatory BC etc.

I am being extremely proactive though as I have been referred to Immunology now who said to me at my first appt that they have never seen anything like this and never anything so extensive so they asked me to go away so they could do their research and come back in 3 weeks. The did get me to have a CT scan of my neck and chest area and will have a report when i visit them this week coming.  I will not go on any medications that make my hair fall out etc etc.  My main reason of following on this track is hopefully we can find out why my body reacted as it did to the radiotherapy and we can help my whole family for the future and so many others out there that may be carrying whatever my body has that causes this morphea.

Dermatology Dept couldn't help in anyway and wanted me to stand up in front of a conference of dermatologist from all over Australia and I declined that one as I am not a Freak Show.

My proactiveness continues in that I am seeing an amazing Bowen therapist every second day (yep that is right every second day) who does 10-15 mins of lymphatic drainage massage on the radiated area which is virtually a full square area over my breast.  Some days we seem to make really good progress and there is slight softening.  Majority of days it reverts to just a hard thing sitting on my chest.  I also do some other a bit out there alternative things suggested by the Bowen Therapist because I am willing to try anything literally.

At this stage there is no way I will be able to have my wish of bilateral mastectomy and reconstruction because the Alien won't come to the party. If they try to do any form of surgery on the Alien it would never heal as the cells are so badly damaged.  (Fibrosis/Necrosis).  That is why we doing the Fat grafting to rejuvenate the dead and dying cells.

I am still unable to wear a bra 2 1/2 years down the track following a lumpectomy and standard treatment.

I continue to believe Miracles Do Happen and it will for me.

Luv u guys to the moon and back.  Mich xoxoxoxo

 

18 Replies

  • Yay that is excellent news Jen.  Have these ladies had BC.  If so you will find there is just this wonderful connection between you that you can't explain and that is what I luv so much about our beautiful Perth/WA group. Is that we come together and just beam from the energy of our Pink Sisters.  It is just a wonderful experience.  If not it will be wonderful just to have that time together.

    Thank you for your kind words.  I keep on keeping on the best way I can.

    Hope you can make that trip one day as we would so luv you to join us up here in Perth but I can relate to that 400klm journey as well.

    Take care, hoping you are doing well and enjoy that coffee and cake of course.

    Luv today, tomorrow and always, Mich xoxoxoxoxo

  • I am a new member to this site, only about a week +, but already I find that there are so many lovely ladies and I am sure gentlemen, who are going to hell and back. BC sux big time huny, but your story brings tears to my eyes :(:(:(:(:(!!! 21/2 years of the kind of suffering you are going through, really puts my 7 months to pale in comparison. I sincerely wish you luck, love and hope for your cancer journey darling Mich.

    You are an amazing woman!!!    Take care always XXX MIA.

  • Hi huny

    I have read your posts and I will continue to do so.

    U have also been through the wringer so my throughts are with you.

    Luv today, tomorrow and always, Mich xoxoxoxoxo

  • Good to hear from you but I wish for your sake that they could find a solution for the alien. It sounds like the medical profession sometimes forget that patients are people who should be treated with dignity and compassion not as a laboratory experiment. Your upbeat attitude keeps you going but your strength must surely be tested by all that you have endured. I truly hope that the next step is more successful for you. Thinking of you. Deanne xxx

  • It is so good to hear from you.  I had been hoping that no news was good news, and I am so sorry to hear that the alien is still on-going.  I do hope that the fat grafts in May go well.  In the meantime, enjoy your trip away and try to forget about everything alien until you get back.  It has been a long 2.5 years for you, and you truly deserve a good result this time around.  Your Bowen Therapist sounds great.  You are beingso strong and optimistic, and I am backing you 110%.

    Here's to miracles!  Lots of love, Michelle xxxx

  • It is so good to hear from you.  I had been hoping that no news was good news, and I am so sorry to hear that the alien is still on-going.  I do hope that the fat grafts in May go well.  In the meantime, enjoy your trip away and try to forget about everything alien until you get back.  It has been a long 2.5 years for you, and you truly deserve a good result this time around.  Your Bowen Therapist sounds great.  You are beingso strong and optimistic, and I am backing you 110%.

    Here's to miracles!  Lots of love, Michelle xxxx

  • Do you know I was just wondering yesterday how you are getting on?Its nice to get an update,and I have everything crossed that the fat grafting does what you need it to do.Keep smiling Mich :) xoxRobyn
  • Sorry to hear you still having trouble with the Alien boob you poor luv & your right miracles do happen...looks like you all had fun at the luncheon I will have to try & come to the next one if I'm ok.. I will be having a hysterectomy & anteria repair this Wednesday , your welcome to catch up on my posts if you like... Take care Michelle & big(((hugs)))to you :) Christine:) x