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  • tismetisme Member Posts: 86
    haven't heard from my breast cancer care nurse since before the lumpectomy 20th march.  next week I see the surgeon again ( I think she said ) dont know why , the week after I see the oncologist , god its taking forever I wonder if its spread since then . the docs apprentice said they had a clear margin.   something else too autistic daughter is somewhat silently worried, she researches things like the suture lines from the lumpectomy hurt  saw the doc about it. she is also a fuss pot  very huggy and always wanting to know where I am ( not like her at all) I worry sick what if 
  • tismetisme Member Posts: 86
    edited May 2019
    supposed to go to the RBH tomorrow for planning for radiation therapy to start on 20th I cancelled  there is evidently a bus from Caboolture that goes to the RBH but I cant get to where it picks people up  I cant walk the few blocks to get the local bus I cant afford taxis  ( specially when im supposed to start therapy 5 days a week for five weeks.  
  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,513
    Hello @tisme sending you a private message
  • tismetisme Member Posts: 86
    went to get a bone density scan today, it turns out if i had just cancer it would cost me an extra 100.00  but because I had rheumatoid arthritis it didnt cost me anything
  • kmakmkmakm MelbourneMember Posts: 7,871
    @tisme One for the win column!
  • tismetisme Member Posts: 86
    its rotten , cancer isnt enough ?? sheesh

  • December2018December2018 Member Posts: 26
    I hear you, my chemo was cut short by 7 rounds due to Neuropathy in my hands and feet. They are being overly cautious because 6 months before my BC diagnose' I  was told by my Neurologist that I have Parkinson disease and the MRI found mineral deposits on my brain, that make no sense.
    So now I see a neurogenetsis so hopefully they can figure out what's going on.
    IM 40 BLOODY 6 YEARS OLD!!!!!!!!!!
  • tismetisme Member Posts: 86
    dont you wish you could shut the brain off, the fear that the burning and tender skin might be bc is driving me crazy.only started like this since the radiation therapy , i told the surgeon last week . when is the crap gonna stop and i get to enjoy something ?/ things got so bad i talked to beyond blue and ended up being ambulanced into the ER   was there for a few hours and they let me out , got a mental health taxi voucher to get home. but here i am as I was before.
  • tismetisme Member Posts: 86
    just thinking, my rheumatologist took me off my arthritis meds before radiation therapy, so what will happen now ,?? such meds lower the immune system , last thing i need is for that to happen while battling cancer
  • tismetisme Member Posts: 86
    anyone been on arthritis meds while fighting breast cancer ?? it seems the meds lower the immune system , which i dont want while fighting cancer  but if i dont the Rheumatoid arthritis can play havoc
  • primekprimek Broken HillMember Posts: 5,336
    Just remember at this stage your surgery is considered curative. The radiotherapy and hormone treatment is to ensure no stray cells survive. The arthritis meds may slow your healing down. It won't be forever, just temporarily. Hope all goes well and you sort transport out. 
  • tismetisme Member Posts: 86
    i still get sore where they did the surgery  of course i think ..... doc says its nerve damage( an ultrasound was done )  what wont be forever??  I still havent got transport sorted, i cant go public transport i have no choice but to go by mini bus which crippled me last time
  • primekprimek Broken HillMember Posts: 5,336
    Is it possible for you to stay at close by cancer lodge accommodation near the hospital to make it easier given your unique health issues. Can you speak with a social worker? Also there may be volunteers through cancer services which could pick you up. Do you have a breast care nurse who could help coordinate this. @Giovanna_BCNA any ideas?
  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,513
    Hello @tisme, @primek
    Good idea regarding a breast care nurse also touching base with the oncology social worker.
    Also contacting the Cancer Council on 13 11 20 to see if they have any recommendations regarding transport and accommodation.
    regards Giovanna

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