What wld you like health professionals to understand re emotional/ psychological fallout from BC?

FlaneuseFlaneuse BrisbaneMember Posts: 826
On another thread, people have been sharing thoughts about the lack of knowledge/understanding among some breast health professionals about our emotions and psychological state, issues such as sleep disruption, the need for information about support groups such as BCNA and others. Generally, the critical gaps in the services that are offered to us. Of course we're grateful for what we receive, but the gaps are vital. Please share, and perhaps the information may be collated and go somewhere productive.
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  • arpiearpie Mid North Coast, NSWMember Posts: 2,871
    The other thread was:
    https://onlinenetwork.bcna.org.au/discussion/19231/early-days-on-letrozole/p27

    Reading from pages 25-27 covered a LOT of information pertaining to this 'new' thread .... and covers a LOT of ground - so give it a read too!!

    You always hear about the BC Nurses .... either from McGrath Foundation or elsewhere ...... I didn't see one!  My surgeon's nurse (unfortunately) rarely returned my phone calls and the local Taree BC Nurse had just resigned & hadn't been replaced after I had my surgery early this year.  I've gained most of my help, support and info from this forum & rate it very highly in helping me thru this bloody mess that is BC.

    Professionals need to  listen to what their patients are telling them - NOT tell them that they are having 'extreme' reactions - cos it appears that we all have similar outcomes, when it gets to the nitty gritty.  They need to fully inform patients of what is about to happen to them.

    Emotionally - we are screwed as it really mucks with your brain (and I didn't have chemo!)  Concentration, memory, even skills are impacted.  Yet many are expected to return to work and be the same person they were before the diagnosis ........ 

    Physically - we are screwed because the medication (some might call it poison) they put us on mucks with many of our body parts - particularly the limbs - aches, pains, downright excruciating at times - and SLEEP ....  Well, that's a thing from the past!

    I could go on .......

    @Patti J  - I am SO sorry that there is so little support out there for those with Mets BC ... and only hope that you are tolerating your treatment as well as you can & continue getting out & exercising & doing what you love doing! xx   



  • ZoffielZoffiel Regional VictoriaMember Posts: 2,793

    I keep comparing my breast cancer experience with my pregnancy. I was late for one and early for the other, but at no time did anyone suggest my brain may need as much attention as the affected body parts.

    I've had a history of mental instability. At times I am incredibly robust, other times not so much so.

    When the wheel fell off after my pregnancy, I asked why post natal depression was not discussed in the pre natal classes. The reply was "We don't want you to talk yourself into it." I shit you not. I gather that has changed. It's about time it changes for cancer patients as well

  • FlaneuseFlaneuse BrisbaneMember Posts: 826
    Thanks @arpie for putting that link here.
  • Rose18Rose18 Member Posts: 87
    I would love there to be more mental health support throughout treatment. It is often expensive and is not even really mentioned. More proactive mental health and wellbeing strategies would be great, along the lines of the move in exercise during treatment.

    Cancer can affect energy levels, relationships, memory, stress and sleep. Four years down the track all of these things are still affecting my life. There needs to be more awareness of these issues. Online delivery of services has been really useful for me. 
  • AfraserAfraser MelbourneMember Posts: 2,376
    I didn't have a BC nurse either, but to be honest I didn't miss out at all, as noted before, my senior oncology nurse was excellent. I can understand the hesitation to tell people everything, to a degree. That first list of potential chemo side effects was stunning (literally). And I have found my oncologist increasingly forthcoming as he has got to know me better, which is natural. But an emotional reaction to a serious illness that can kill you, with difficult treatment as the only option, seems bloody predictable, it's only the degree that's uncertain. I wasn't desperate, just very confused, and I had enough resources to just pick up and go and see a professional for guidance. Not everyone is able to do that. 
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,793
    @allyjay XXXXX
  • arpiearpie Mid North Coast, NSWMember Posts: 2,871
    @AllyJay  .... but for the grace of god, that could have been me!  :(  I was shit scared I was pregnant and was SO lucky .... I wasn’t.  but back then, that’s what it came down to ... good luck or bad luck in the early 70s.   I know a lot of friends born in the 50s who really resonated with the “Love Child” series, for so many reasons.

    Take care, my friend xxx
  • kmakmkmakm MelbourneMember Posts: 7,371
    @AllyJay Heartbreaking. Superb response. Big hug my friend.  <3
  • RomlaRomla AdelaideMember Posts: 1,904
    Thanks @Flaneuse for organising a new thread .If you haven’t already organised the mods to move p25-27 from the Early day’s on Letrozole  thread to this thread am happy to do it - there was some very good thoughts on there worth keeping together.
  • FlaneuseFlaneuse BrisbaneMember Posts: 826
    @Romla That would be great if you could do that. It will make it easier for whoever eventually does some serious advocacy work on this issue to pull together what people have said.
  • RomlaRomla AdelaideMember Posts: 1,904
    No worries @Flaneuse will pm the mods.
  • FlaneuseFlaneuse BrisbaneMember Posts: 826
    @AllyJay xxx You've had more than your fair share of being on the receiving end of brutality and insensitivity. 
  • FlaneuseFlaneuse BrisbaneMember Posts: 826
    @Zoffiel I had a similar experience with menopause; "Don't start imagining that you have all the behavioural changes that some people have". 
    I was stunned when the rads onc registrar said some BC patients begin to worry that they have what someone else in the same ward has. That makes absolutely no sense. Each set of "results" is individual. 
    When I have more energy, I'll make a list of my wishes for health professionals. But in the meantime, my classic remains the BC nurse who told me the morning after my mastectomy that I had "catastrophised" everything because I had queried being given the wrong information about scan results (twice). 
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