Support needed from health professionals during treatment and beyond

@kezmusc then the training of those working in this field needs to change in particular nurses who tend to be at the frontline in post operative care.

Maybe @BCNA needs to take up this issue with educational institutions or even participate/host a seminar as part of ongoing professional development- am sure people like @Giovanna_BCNA and the  other mods for example who are nurses themselves have a wealth of knowledge gained thru the blog that can be shared with others in the profession let alone us speaking up even now with our medical teams . 

I guess there is also the other side of things.  We all know that until you have felt it, you can only imagine.  You can have the best, well meaning BCN and team of doctors, but they really don't know how those things impact your life after.  "Here you go, chemo and rads are over, take these pills and I'll see you in 6 months"  only to be told exactly the same thing as the first time, not one question regarding my mental health.  Just seen as a bit of a whinger I think.

I finally got around to watching Liz O'riordon's video only yesterday.  She definitely hit the nail on the head.  The small things make a huge difference.
Seeing it up close @kmakm must have been devestating to say the least and ads a whole other dimension on top of everything else.

xoxoxox

"Emotional counselling would seem important as a basic tool, not only when things get desperate."

@Afraser Precisely. Yet I had to chase and chase for this at the beginning because, given my family history, I knew this would be something I needed.

I think the last point is one to remember @kmakm. Often the health services offered are either not able to be offered, in the same way, in every region or may not be accessible, for a whole range of reasons, at the time they would be most effective. I didn't have a breast care nurse. I had a brilliant senior oncology nurse. Her great strength was seeing the individual not just the patient. So when not able to articulate exactly what was bothering me, she could add two and two and gave excellent advice. What's 'normal' also varies immensely - in one sense, I never left normal and in another a lot of things changed, but largely for the better. I imagine a close encounter with any mortal illness, and unwanted changes to one's body, are very likely to initiate a whole lot of thinking that may not have occurred, or occupied much time, before. Emotional counselling would seem important as a basic tool, not only when things get desperate. 

@Romla Agree. Something more structured, less ad hoc.

I think at the time @kmakm I was unable to verbalise what I needed and it would have been so good if someone had given me a practical direction to start to work that out.I was just given a huge bagful of literature which I was unable to sort thru myself  as just plain numb with stress.

 My bc nurse in hospital only talked about a fundraiser some months later and I needed more immediate practical help.I’d like that support started in hospital and followed up with later.

@Romla That's the very thing I was driving at. It would be so helpful if there was a mandated check-up three months later. Eg. "You've 'settled-in' to your hormone therapy, and things have gone back to 'normal', but we know you've been changed by this experience, so is there anything we can help you with?" And then say, run through a check list.

This was all just a thought and in no way meant to suggest a priority. I have watched my sister die from breast cancer. Not from a distance, but up close. I cooked the last meals she ate, I held her while the emotional pain at her imminent death wracked her entire being, slept in her hospital room, read to her at 3am when she was struggling to sleep, held my parents, and her children, in their despair at watching their child and mother die, and much much more that is not appropriate to detail here. I wish in no way to trivialise anyone's suffering or need. If I was queen of the world, Stage 4 BC would get far more.

However as to myself, I can only speak to my own experience, and as a survivor who is finding it difficult, I was just musing at how I'd improve the system for the many who do survive. Health care is complex, and in a country as large as this, often difficult to administer; my sister, in metropolitan Melbourne, received incredible support from many services. The government could pour all the money available into health care and there would still be gaps.

Peace to all. K xox

The being alone in a crowd even with familiar faces was huge.I’d like bc nurses in hospital to talk about the support of the BCNA blog , local support groups close to the patient , programs like Look Good Feel Great , Encore , Cancer Connect of Cancer Council etc all the things I had to find out myself when I found the strength to look outside myself.

@romla Exactly... Where to now and what do I do - I no longer recognise the person that looks back at me in the mirror.

@"Patti J" Ditto what @kezmusc says. Please look after yourself.

I guess it could simply be described as “What now ?” And I had no answers.