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Newly Diagnosed

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  • RomlaRomla AdelaideMember Posts: 2,087
    Bugger sorry think I should have written @shann so you know I wrote to you.Sorry.
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,408
    Hi @shann, I have been following your posts and wishing all will heal but it doesn't seem to be healing right. I am thinking autoimmune disease as well and found 3 links which may help. You would need to see an oncologist and maybe to get it via pbs system, lie a little by your doctors and say its arthritis treatment? Just trying to think outside the box. <3
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5319730/

    https://www.gene.com/patients/medicines/rituxan-oncology

    https://www.humanservices.gov.au/organisations/health-professionals/enablers/rheumatoid-arthritis
  • Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 1,952
    @shann - Im so sorry that you are still having these problems - you must be getting so frustrated.  Sending you the hugest of hugs xoxoxoox
  • shannshann Member Posts: 68
    Hi @Brenda5 thanks for the information and I have been reading the articles you sent.  Some do relate and been going over the bloods that were taken when I had the auto immune test done all were negative, even all my white and red blood counts where normal.  I would be covered on PBS as I am on disability.  I will take the first article to my surgeon on Friday but he will probably say it isn't as I suggested to see a vascular surgeon before and he laughed at me.  It is hard to get any referrals in the public system.  I have also seen a Infectious Disease doc but have no infections so it makes it very hard.
    Love all the help and positive comments on here. xx
  • shannshann Member Posts: 68
    Hi @Sister my doctor/surgeon dosen't do much at all and won't listen to any of my suggestions, so am trying to do this by myself which is very difficult but i keep moving forward and looking.  As I am a nurse I don't do random searches so I suppose that is an advantage but there is only so much I know and hit alot of brick walls. xx
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  • shannshann Member Posts: 68
    @Joannie I am in Qld and the NDIS has not launched yet and I am not able to use the service due to my age and the condition I have but thank you for your suggestions.  The hospital just says it takes time to heal as I am a slow healing (never been in the past) Everytime they take me off the pump it just opens.  Thanks for your suggestions. xx

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  • kezmusckezmusc Member Posts: 1,544
    Hey @shann,

    Goodness what a time you are having.  Does your hospital have a specialist wound care nurse? The public hospital I work at has 2 specialist nurses for wound and stoma.  I have seen some pretty nasty stuff in the ward I work and these guys are invaluable.  If they don't and you are getting nowhere, the hospital should have a customer liaison and complaints officer to start a case and follow it through. 

    xoxo
  • shannshann Member Posts: 68
    Hi @kezmusc
    Yes the hospital has 2 of them and both have done different things but no results or forward healing.  I am unable to go to a complaints officer and the next nearest hospital is an hour or so away and have no way of getting there or the funds to catch public transport.  
    To @Joannie I have found that being in private health you are no better off as there is alot of out lay cost that you don't get money back on and in Qld I know many people go public for all their cancer treatment as their out pocket costs are thousands.  I am single and in my mid 40's and no super as prior to divorcing my x was a stay at home mum so only been working for 5 years so no super.  This is the forgotten age but to many assume we are married or have been working all our lives and have something to fall back on. xx

  • arpiearpie Mid North Coast, NSWMember Posts: 5,356
    Hi @shann

    @Romla's post reminded me of a buddy in NZ who has so many skin cancers there isn't much 'original skin' anywhere as he's had so many removed & plastic surgery/grafts for each ..... one  that was on a bony part of his leg was not healing - it had rejected the skin graft & was quite deep & nasty ..... the hospital even tried a 'steam vapour'  (continual warm air across the wound) and eventually sent him home.

    He visited our holiday shack at the beach & he rinsed the wound every day in fresh ocean salt water.  It slowly started to heal around the edges & grew smaller & smaller & eventually closed up completely.  He took a 5 gallon container of fresh salt water home with him, to continue the treatment after the holiday.

    Other treatments for wounds that won't heal can be Manuka Honey (so SUPER saturated, no bug can live in it) and even egg white!  The protein in the albumen coats the wound - and without air - nothing can survive in it.)

    I know it sounds a bit 'whacky' - but they've all worked in different circumstances

    Maybe mention these to your Drs/specialists - with a bit of luck, one of them might work

    All the best for your ongoing treatment xxx

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  • primekprimek Broken HillMember Posts: 5,409
    I truly believe you should request your GP to write a referral to a different public hospital for a second opinion.
    That option is obviously further than 50k away.
    You would be entitled to assistance for this....you would get at least a partial refund. 
    Also your breast care nurse may have suggestions of services that might also assist with transport / costs.

    I am so sorry for you with all this ongoing drama. A physician may also be the next step. Someone to look at the big picture. I lnow they don't normally deal with surgical issues however your case is not infection related and quite unique.

    https://www.qld.gov.au/health/services/travel/subsidies

    https://www.imsanz.org.au/about-us/what-is-a-general-physician

    Kath x
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  • primekprimek Broken HillMember Posts: 5,409
    edited July 2018
    I'd also be ringing the QLD cancer council and request help. They have free social workers, transport and financial  advice. It might be helpful to make the call. 

    https://cancerqld.org.au/get-support/cancer-support-services/
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