Thanks again for the sweetness @Anne65 yes it has been tough but am doing okay considering everything, particularly as I finally got seem Herceptin and Perjeta into me today. Yay! After running around on Friday to get all of my reports and films and scan disks and referrals together in one big show bag I was told by the receptionist of the specialist I had hoped to see that she probably wouldn't be able to see me, given that I had already seen two specialists (maybe she thought I was doctor shopping). I was deflated by this as I had been given hope that she would if I did the necessary run around. So I went and bought myself a wig to try to cheer myself up, and it kind of did, although I did feel a bit ripped off! Wigs are expensive! When I saw the price tag on a human hair one was over 3 grand I had to say thats not in my price range ( and is kind of against my values of not exploiting other human beings) show me the synthetic options! I wound up spending $500. But it did make me feel a bit more pretty now that I have a bald patchy head.
Early this week I tried the surgeon's office again, and when I got an answer phone and no call back I decided to try to get an appointment with my original surgeon, as she seemed very good too when I met her but maybe is not as in demand or renowned. I was lucky to see her again the next day and she confirmed that my presentation was inflammatory when she first examined me, and she seemed surprised that I had only just learnt this. I don't remember her saying that to me when we first met, however truly it was a whirlwind and maybe I was not taking notes or taking everything in. However she also gave me the impression that this should not be as bad as I had thought in terms of how it changes my prognosis or that the delay in getting me on a better treatment for my particular cancer would alter that. We had a good talk and I came out feeling much better. Funnily when I went to collect all my films and MRIs and reports etc from the other surgeon's office, I was offered an appointment, which I accepted, so I will be seeing her in the morning now for a third opinion before I head off a a brief 5 night holiday between chemo sessions (weekly now). Maybe it is overkill but I'd like to meet her to get a sense that my treatment plan is appropriate or hear her ideas/thoughts. I'd like to get a sense of who I would like to do my surgery as by the time surgery becomes an option for me I may also have private insurance. However I understand costs would be high.
I am renting a house in the country near our farm that I took last school holidays when I had some signs of cancer that I mistook for mastitis. The woman who rented me the house was undergoing cancer treatment and we have bonded a little bit more now that she knows I am going through the same. What a change in all of our lives from one school holiday to the next! Strangely lots of good things have also happened and I have never felt so loved and cared for by so many people, particularly my immediate family but also my friends. It also makes estrangement from members of my husbands family a little bit harder to take. However I only want good and positive people with decent values in my life and sometimes people's absence can also be a good thing.
I know I write very long posts on this thread and am kind of using it like a journal of my journey. Brevity is sometimes not my strength!
I am very grateful for all of the love and support I have been shown here and to have this forum to learn about other's experiences and feel supported in my own difficult journey. Sometimes I must admit I feel a little bit jealous of women who have had an easier journey, who caught their cancers early, had lumpectomies and got chemo to be on the safe side once it was all removed, and are now survivors. Knowing how rare and advanced my cancer is and that I have to accept it being there and being big and being in the dermal layers and being a bit extra threatening can make me feel a bit sorry for myself in some bad moments. However I know that whatever stage cancer is caught at, it is hard to take, that even when it is gone it can be a source of anxiety, and I know that many others have gotten through similar stuff to what I have been going through and are going through even worse, including living with metastatic disease, so I also have to count my blessings.
Love and care and prayers for recovery and no recurrence to you all. For those of you who are living with advanced disease I salute you and pray that advances are made that can give you hope for a cure as well.
