What wld you like health professionals to understand re emotional/ psychological fallout from BC?
Flaneuse
Member Posts: 899 ✭
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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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
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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
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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.3 -
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.1
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I think it is all too easy for medicos to just look at us patients as a combination of cells and body parts, rather than as three dimensional sentient beings. Take a blood test, take an x ray, perform this that and the other procedure. Place into mixing bowl and whisk on high for three minutes. Remove from bowl then slice and dice till all the "iffy" bits are removed. Well...aaah...f******ck...no!!! The fact that our previously well behaved, or at least somewhat behaved, bodies have turned feral, and are now trying to kill us, and furthermore, that the offending part is the external manifestation or our womanhood (in the case of the ladies in the group), is just a double whammy. How can we ever trust any part ever again. Each ache or pain at some level, whispers in our ears...."I'm baaaaack...." It's not just a chemical and surgical fix, and after you've been poisoned, nuked, chopped up then for dessert, for some, further chemical nasties which for many have really nasty side effects. Then you can dust off your hands and "Get on with the rest of your life".....(Takes a deep breath here). This takes me back forty two years when my firstborn was relinquished through a forced or coerced adoption. Carry the baby...have the baby...have your undercarriage sewn up....have your breasts bound on discharge from hospital..." Right now...just sign here, here, here and here. Good, that's done. Well good luck for your future. Once you walk out my office, just forget all this and get on with the rest of your life. Pretend it never happened."...Yeah, and that never happened to either me or most of the thousands of other girls and young women of that dark era. It wasn't just a case of getting on with the rest of our lives. It took a good few decades for the medical profession to realise the full emotional and mental anguish that stays forever. Sure, most learned to create lives and families afterwards, but are forever scarred and very leery of social workers and the like. The idea that we as individuals were suffering like this in the weeks, months and indeed decades was said to be "Highly unusual". That "Most girls have turned the page and forgotten the past"...Hmmm, they must have thought they could get away with that fallacy as each disgraced non mother stayed in her lonely shame. But then came publicity and openness as society changed. Support groups were formed and the media blew the whole sorry mess out of the water. Women came forward in their hundreds and with the arrival of computers, the myth was finally outed. Well for us in this group, to a larger or lesser degree, we are being led to believe that certain side effects are rare and hardly seen. Really? "Oh...these reports are apocryphal..."...apo...crap...full...in my view. We are not all just hypersensitive hypochondriacs who should please just bugger off now...take your card to reception, and we'll see you in six months time. Time to fess up and hear us...help us...7
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@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 xxx0 -
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.8 -
@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).0
