Newly Diagnosed

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Comments

  • jennyssjennyss Western NSWMember Posts: 576
    Dear @shann, Best wishes for your recovery from your recent surgery. And best wishes on the financial front. Lack of money = big worry, I know.
  • shannshann Member Posts: 68
    edited May 2018
    This is difficult in the public system as there is only a few doc that do this at ** hospital and they all talk.  The nurses tell me I have a reputation as I don't heal and have no pain threshold anymore and they all call me a sook. Dr says its my fault I don't heal, in other words they don't have a reason or a reason why I am not healing.  I just have to keep proding along and just hope for the best. The private dr wanted $10 000 to do it but i just can't afford that when finances are not good.  I will stay strong and but do have my dark days when I just feel like giving up. I will be on and off on here and give a yell when I am on.  xx

  • SisterSister Adelaide Hills, SAMember Posts: 4,355
    There are really times when I hope that surgeons and oncologists monitor this site as guests (and other times I hope they don't). Hearing what you're saying makes me wish there was someone in the field reading what you've written and understanding just what you're having to go through. I still think that your surgeon should be reported to the medical board and if that is the culture of the hospital, it is appalling. I am so sorry that you're having to deal with that on top of what is hard enough anyway.
  • shannshann Member Posts: 68
    If I had the money to go to this private dr I would but unfortunately that is not an option.  Thank you all for your kind words I appreciate all of them.  Yes it would be nice if the dr got on here and read what we are really going through and how we are feeling they really don't listen or they just offer you a councilor and thing that is the answer.  But anyway I will keep going and have all fingers crossed that this will work this time. xx
  • FinchFinch MelbourneMember Posts: 296
    How on earth can a nurse call you a sook or even that it's your fault you've not healed. Where is the compassion , the understanding? Dreadful. Dreadful . Dreadful. How dare they make you feel like you do. Did you ask for cancer? Did you ask for any of this? Fingers crossed for you @shann this works and hope someone there in that hospital understands what you're going through. Xxxxxxxxxxxxxxxx
  • lrb_03lrb_03 Member Posts: 1,162
    Please know that there are places you can go to put in complaints. It doesn't have to be now, but document everything, and keep a record of the sort of things that are said to you. Get names wherever possible. All public hospitals should have a charter of your rights and responsibilities , and theirs. This should be readily available to you. A version of it should be on their website.  They should also have someone you can go to if you have concerns about your treatment or some aspect of your care - being called a sook, for instance. If you get no satifaction from them, each state has something called a Healthcare Complaints Commission,  or something similar. Unfortunately this takes a degree of strength and resilience that you may not feel that you have at present. As I said earlier, do it when you feel ready.
    No one should be told they have no pain threshold, they can't feel your pain, they shouldn't judge it!!
    I'm embarrassed to call myself a nurse at the moment, if that's the way members of my profession have treated you. 
    Take care
  • shannshann Member Posts: 68
    Hi all
    Well I have had the surgery, have over 60 stitches in my chest and had a pico pump fitted after surgery, all was good in the hospital (stayed 7 days).  Since being home have had pico pumps but ooze got to much so on went a vac via at last weeks check up.  Still alot of ooze that has got mucusy but they are not concern as I was told over the phone (again not listened to)  but getting use to it.  Back again on Friday 4 May for removal of the stitches (not looking to that).  This pump is ok but the tape on it is causing some blistering under it that is quite painful but I will put up with it. My breast care nurse at the hospital (who is nicer than most there) is on holidays for 2 weeks so not sure who I will get to take out the stitches as the surgeon won't do it as he said he would hurt me so nurses will do.  Just hoping this ooze stops (no one can tell me why there is so much ooze as there wasn't this much in the hospital) so I can back to normal life and back to work so finances are better.  Just sitting at home doing nothing as I have been since October 2017.
    Thanks again to all that listen. xx
  • FinchFinch MelbourneMember Posts: 296
    @shann I hope all is ok, I think it's much better for the nurse to take out the stitches, they are very competent and will do it properly.  Take some painkillers beforehand to help with the pain. Fingers crossed for you.  You are so patient . Xxxx
  • PatsyNPatsyN Byron BayMember Posts: 296
    @shann - I used StrataXRT made especially for radiation burns. They do another one made especially for open wounds which can't be stitched - but stitches would help it work even better. It's easiest to buy direct from their website Stratapharma Australia. The one you would use is called Stratamed. I cannot recommend their products too highly. I used Stratamed on my mastectomy line as soon as they removed the dressing. I used their XRT product during radiation. I think it saved my skin which never blistered.
    My heart goes out to you.
    The medical profession stick together...

  • shannshann Member Posts: 68
    @patsyN - I will look up the company straight away.  Yes they do stick together.  I am a nurse and always look elsewhere if something is not working.  I have been searching for something for ages but keep getting told that all of this is my fault.  I always said  that my skin has the problem but no one listened to me I even asked to see a dermatologist within the hospital system but was told that is not what you need.
    Thank you for the information.

  • primekprimek Broken HillMember Posts: 5,133
    The ooze increase might  be due to increased activity since home. I really hope all goes well. When they re-excised did they send of for pathology check? I am assuming they have looked at the results but do ask. It's important that any antibiotics on are the right ones. 
    My breast care nurse at the hospital didn't touch my sutures, but they did have other Registered Nurses working in tbe team.

    I agree on writing down  who said what and putting in complaint later. It's your right. It might just result in better treatment for  you and others in the future. 
  • shannshann Member Posts: 68
    The registered nurses are the one who say I have a reputation there, but yes I always come home and write in my diary of what went on when I visit the out patients.  I have made a complaint before but nothing was done.  They just all seem to think I am a sook.  Not much can be done really it is the public system.  I am a nurse myself but would never be like the ones I have come across in this hospital.  I just have grim and bare it for now now.
  • FinchFinch MelbourneMember Posts: 296
    Good luck with your stitches removal tomorrow @shann . Hope it all goes ok for you. Xx
  • shannshann Member Posts: 68
    Hi all, hope everyone is doing well.  I have had surgery now and now have openings again and not healing again, supposedly on the inside now. All 64 stitches are now out that was painful.  Personally I think I have a seroma, but can't get a deffinite answer from anyone.  I asked questions to my surgeon on Friday and he looked blankly at me and just said you are going to take time to heal.  But it dosen't help my situation now.
    With that in mind I would like to ask a question: Why is it that there is nothing out there to help cancer patients for a certain age bracket, they have so much for kids and young people and plenty for the elderly but the age bracket in between they don't seem to worry about (my dealings anyway).  They seem to assume that we should of worked and can rely on super or that we have partners they should be supporting us.  I think this should be something out there (as centrelink has nothing and hard to survive on believe me) Please let me know what you think and if you know of anything that is available to this age bracket or are we forgotten about.  I am not talking about support groups, therapy etc.  Thanks again for listening.xx
  • lrb_03lrb_03 Member Posts: 1,162
    Oh, @shann, I'm so sorry to hear that, both that the wound has opened, and that you're struggling financially.
    I do think you're right. There is a certain demographic that is often forgotten. Single (female or male) and in those middle years. I was lucky enough to be well enough to work through my treatment, a combination of reduced hours, and a supportive workplace. I also had the support, physical & financial when needed, of my extended family, including my aging parents. At this point in time I haven't had to access any sort of government or other financial support, so I can't make any useful suggestions. 
    Take care
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