When you're diagnosed you should be given a sheet of paper from your breast surgeon or breast care nurse of all the allied health services and providers in your area should you wish to avail yourself of them. Dietician, counsellor, masseur, exercise physiologist, physio, lymphedema specialist, support groups, prosthesis & bra fitter, Otis Foundation etc etc. You can then ring them yourself, or take it to your GP to get care plans sorted. There should be clear information on it explaining what you're entitled to under Medicare. I had no idea about that stuff before BC.
Our issues round sleep should NOT be dismissed or put into the too hard basket. You simply cannot have good quality of life if you don't get decent sleep. Your emotional health and mental wellbeing deteriorate very quickly without sleep. Clear guidelines and policies should be developed round assistance in this area. I understand that some people have addiction issues round sleeping pills and that they become less effective if over used, but I hated being made to beg for them, and being made to feel like a desperado for wanting them.
I understand that you can't hit devastated newly diagnosed people with too much information too soon, and that the difficult treatments have life saving benefits. It's a fine line the medicos have to walk, but there comes a time when we have to stop being 'handled' and spoken to honestly about the ramifications of the treatments we are prescribed.
And as outlined in the other discussion, a mandated 'survivor' appointment, approximately three months after active treatment, to check in on how you're going, specifically emotionally, the mental health aspect.
No BC doctor spoke to me formally about mental health with the exception of a locum oncologist filling in during January while mine was on holiday. This seems to be a huge gaping hole in BC care.
How hard would it be to say something like:
"Having breast cancer can be really hard emotionally, and we know it can change you in a number of ways. (For those on hormone therapy) It is important to recognise the links between hormones and mental health, so it's quite understandable if you're struggling. How are you feeling emotionally? Is there a particular problem you'd like to discuss?"
Or words to that effect.
My wonderful GP told me that I have prompted her to do a study programme on survivorship. She said she has so many women coming into her office struggling with life after breast cancer that she needs to know more about it. She's spending time with breast care nurses and other BC specialists, and attending information sessions.
And tell me, I am interested in whether this is just my experience, but how many of you have had a treating doctor speak to you about the impact of breast cancer treatment on your sex life? The answer for me is zero. Before, during and after. Have a read of this Spanish study:
http://oncologynews.com.au/phobic-anxiety-is-linked-to-sexuality-issues-in-women-who-are-breast-cancer-survivors/I kicked off this discussion and I'm glad it's continuing. This year breast cancer has become the most commonly diagnosed cancer in Australia. I say again, less pink ra ra happy survivor promotion, and more direct dissemination of information that this remains a serious disease that kills thousands a year, can and does return remarkably frequently, and that it messes with your head. I know doctors are frequently overworked and that the health system always requires more money. Mental health is getting a bit more political attention at the moment. Given that we're now the biggest cohort of diagnosed cancers in Australia, our sheer weight of numbers should get our mental health onto the agenda.
