Support needed from health professionals during treatment and beyond
This discussion was created from comments split from: Early Days on Letrozole.
Forum Discussion
36 Replies
I've spoken at a COSA conference. That meant sitting through two days of speakers. The focus was almost entirely clinical apart from myself and one other consumer. The majority seem driven by finding a cure, which is worthy, but once they have done all that is possible with active treatment they move on. And it appears they think we should too. Once again, there is a serious lack of resources so if it comes down to a choice of finding the magic bullet or initiating programs that provide long term support for people who are not recognized as being at risk of mental health issues...
- I too have been repeatedly advised against this forum by doctors, counsellors and nurses. When I've been able I have disabused them of the notion that it's full of horror stories. That it's supportive and a valuable resource, and great company too. Dr Liz O'Riordan recommends that all BC doctors spend a bit of time on the forums so they truly know what their patients experience. As so many dismiss the sleep problems of a BC diagnosis and treatment, so they dismiss this service that the BCNA advises. I would LOVE to get up at a conference of breast cancer doctors and give them my perspective. I bet there's a number of people here who'd like to as well!
- Possibly one of the reasons I am here. I wasn't part of the network when I had treatment, I was well and truly over all that before I joined. As someone who didn't have an awful time, still has side effects that will stay with me but are manageable, I thought a relatively positive message might be useful. The mix of voices and experiences here are what makes the network helpful.
- Hi there @Flaneuse...I mentioned to my oncologist, AKA "The Ice Princess" that I was a member of this group and was told "Aaaah yes...I've heard of it and other groups too for people affected by breast cancer. Unfortunately, with groups like these, you get members who are always ready to share their horror stories and seem to take the lead in them. The great majority of those who get through all the treatment without too much trouble seldom join such groups, or soon leave as they get on with their post treatment lives and don't see the need to keep rehashing that portion of their lives". That may not br completely word for word, but it will be pretty close . You might now see why she has the nickname with me that she has.
- Ditto to all this. Last week when I was seeing the Radiation Oncology registrar (a cheaper version, no doubt, of my proper radiation oncologist), in the course of conversation, I mentioned that when I'd been going in for my surgery, the BC nurse had said, "We like to separate out our breast patients among the gynae patients. We don't like our ladies sharing their stories." I said I'd found this astonishing, given the potential for women with BC to support each other. He said something like, "Oh, there have been problems with some people talking to others and imagining that what someone else has got is what they have." !!! I told him that the BCNA online forum had been my lifesaver and has provided far better support and information than most people in the hospital system.
A neighbour who went through this 2.5 years ahead of me was the one who told me about BCNA, not the hospital. - It is amazing how many people still have never heard of this forum. I speak with the BCN's regularly and tell them how invaluable it is that people know about it. They have started passing the information on (not sure how often) but probably didn't quite realise how therapeutic it can be just to speak with people that "get it". To know you are not the "odd" one and to hear from others further down the track.
I think education definitely needs improving. While the doctors and nurses may be clinically excellent I guess they can't really see the other side unless they are made aware and it should start in med school/nursing school.
I remember the day I got my diagnosis. My GP, just pointed to the QML results. Right at the bit that said "highly suspicious for metastatic breast cancer" said "that's cancer."......and promptly ran out the door to find my husband (who had gone to the loo while we were waiting) so I was just left sitting there trying to comprehend what I had just been told until she got back with him. Don't think she had had to tell too many people that sort of thing.
Disappointed sums it up beautifully @pattij I've been on this bus for a while and, while I'm incredibly grateful for the services that have kept me alive, the lack of attention to the subtler injuries--both mental and physical--makes me a bit sad.
I understand that there are limited resources, and that my 'lifestyle choice' to live in a regional area means I can't access the services which are available in the metro centres. It's disappointing that if I hadn't had access to the information this forum provides, I wouldn't know that there are programs designed to help people in my situation. For example, I've done my best to knit my own redneck rehab program but it shits me that no-one suggested I should do that. The programs aren't available here, so they are not mentioned. The hospital does run 4 week gentle exercise course a couple of time a year, but sitting in a chair waving my arms around is not going to cut it for me. I need to be doing pushups and serious weight bearing to keep my bone density stable and manage my lymphedema, so that what I do but I had to find that out for myself.
I'm constantly disappointed by the lack of understanding of the side effects of those life saving medications. The choice is clear, take them or don't take them, but it would be helpful to have some recognition of what those choices can mean to some people. Like Kez, I'm told my reactions are extreme. That's just a lie. The drug companies control the conversation about side effects and I do not think they are entirely unbiased. It's disappointing that the experiences of a sizable cohort are dismissed. It's fantastic that some people tolerate AIs well, but to suggest that 'some' people may have 'minor' joint and muscle pain is patronizing nonsense. It wouldn't make one bit of difference to my reaction to the drug, but it would be nice to know I'm not some weirdo who's body is rejecting a treatment that it is suggested others take with impunity. Misery may love company, but it is reassuring to know this is not just my problem. Sort of.
- Thanks @kezmusc, @Sister, @Flaneuse. I am OK. It is just disappointing.
- @"Patti J" Clearly you're in a horrible situation. The inappropriateness of services offered or not offered to you must be a nightmare. Hugs.
- Can I recant a few posts ago and say the biggest help post op for me would have been to be shown this blog - the amount of information, care and support on here has been wonderful personally and it’s an immediate support we can easily access when we are finding our feet and we’re not up for more social stuff like support groups , Encore , Look good feel betteretc - it was my lifeline early on when I eventually found it .Tbh I wish I knew about at the initial diagnosis as it would have helped on some dark days and nights before treatment started.
