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
