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Lupus, CPTSD, Breast Cancer... Oh My!
Hi everyone thanks for having me here in the group. i have systemic lupus and have been living with it since i was 17 years old. i'm 35 now. I found out last week i have breast cancer from the doctor on the phone because he wasn't in... then i found out from another doctor that i have a "standard garden variety" breast cancer, then i found out that the fine needle aspirant result was compromised because the collectors of the sample damaged it with formalin. and i found out that i actually have triple negative grade 3 breast cancer... so it's been a bit of a rough week... i also got a msg from a girl from uni that i thought was my new best friend saying: "sending you love and light and postitive energy huni! who do i talk to at your placement you're not longer doing so I can do it instead?" then a friend i have been close to since grade 9 so 20 years say: "its facinating isn't it? i mean from a scientific perspective!" about my new diagnosis...
anyway. i love dancing and singing and recently picked up the ukulele and guitar and i have 2 pet bunnies. i had a another bunny who is still my son in my heart... he died from a rare cancer and i couldnt save him. i'm still in grief of him since he left for the rainbow bridge 2 years ago. now it's my turn.
i also adore weight training. i started powerlifting mid 2015 and was getting to the point where i could deadlift my own bodyweight (80kgs), and squat 60kgs and bench 35kgs... but now i will have to start again. I also love swimming and horse riding and badmington but don't do those enough...
have a very supportive and loving partner and his mum and my mum. but i havent told my mum yet as i dont want to upset her because she had breast cancer and although have been in remission for 18 years or so has been living in fear... my plan is slowly let her get used to the idea i may have it then to tell her after my surgery when i find out if the cancer has spread. then at least she won't need to wait for results and get stuffed around like i did.
i find out tuesday 1st march if it's spread to the lymphs or bones from all the tests last week and i suppose just go from there.
thanks for reading and i wish everyone healing energy and a big ol hug :)
liz
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33 Replies
hi brenda, yeah i am going to have to try to get used to another way of life now i think... one day at a time... hugs xoxo
hi jackie, yes waiting is horrible... but i think this last 2 weeks i feel so worn out that i was happy i didnt get the results yesterday... especially when i was still recovering from the liver biopsy... thank you for your well wishes, sending you a big hug thanks for dropping by xo
hi yvette, just found out that immunothearpy excludes people with lupus... http://www.cancerresearch.org/cancer-immunotherapy/about-clinical-trials/should-you-participate
Any procedure is a big thing, don't beat yourself up about it. You got through it and that's the main thing. On to the next step of seeing the dr again. Take it each little step at a time. Thinking of you today. <3
I can well understand your feelings of fear and confusion. Try and be kind to yourself, I found the waiting was much harder and scarier than any of the treatment thus far. At least once you have all your results you know exactly what you're dealing with and your medical team can go full steam ahead with their action plan. Basically, don't fool yourself, the waiting is not at all easy, it is very very frightening and I wish you all the very best on your road toward good health.
Take Care Humblevoice
Jackie xo
hi everyone just a quick update, i had a MUGA test to see if my heart is ok for chemo on monday and i had my liver biopsy yesterday... it was horrible and i nearly fainted when it was time to go home as my blood pressure dropped to about 90/60 or something... the sedation didnt wear off i think and i didnt really eat or drink enough... and the proceedure was so scary adn even though i didnt feel pain from having a local, i nearly threw up and cried when they pierced my liver... but i didnt... i got a surprise letter to say i have to go see the doctor today about something... they said there is a slight chance the results may be ready today... i'm so so tired and i am so confused and scared... but the fight hasnt even begun... this is the easier parts....
hi brenda yes i hope i can get onto a new drug that may have less side effects as i have a very sensitive system... xoxoxoxoxo
hi yvette thank you for the link, it was an interesting read but i read that only about 2 - 3% of patients can be actually eligible for it... i will ask my doctor about it as i have no idea how to be in touch with the institution... thank you for advice about a treatment plan. i still dont have one but hopefully soon... xoxoxoxo
hi leonie thank you for sharing, how did the chemo go? and yes you are so right about keeping on fighting... thanks for stopping by to comment xoxoxoxoxo
Liz - crappy news, this cancer shit really does suck. Had my chemo late yesterday and I take hope from all the women I see around me, just like those on this site, who may be battle-weary at times but don't stop fighting, and find laughter and joy in the simplest of things. Sending some your way right now,
Take care,
Leonie
