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.

It's a continual roller coaster of emotions. Sometimes I feel confident, and other times I feel like curling up in a foetal position and balling my eyes out. Most of the time I feel somewhere inbetween. Those extremes can be made worse by sleep problems and stress in other areas in my life.Those feelings can swing from one extreme to the other during hours, days or weeks. If I need help when I'm having a crisis it's really important to be able to get hold of someone to talk to fairly quickly. Not in 2 weeks time when there's an appointment available. The most helpful people have been available, listened, validated my feelings and offered words of comfort as well as practical help and advice, if warranted.The least helpful people have dismissed my doubts and feelings and brushed them off, or simply not been available when I needed them.I've found this experience to be quite lonely. It'd be great if you could be put in touch with others in a similar situation fairly early. The same concept as a new mother's group. Not necessarily a facilitated support group.This online network has been invaluable for me.I wish there was a cancer care centre near me. I love the idea of being able to drop in somewhere close by for comfort when I feel the need.

@AllyJay I know it happened but it's just unimaginable to me how you have got through it - that treatment was an abomination. Small words but I hope you know...All good thoughts here. I have been lucky enough to have an onc who recognises the emotional and sexual well-being issues but it still doesn't help much. There are psychs attached to the clinic but when I tried to access the service, I could not get an appointment. I was falling apart when I eventually got into a psych through the Country Fire Service family mental health programme.I hate the "new normal". There's nothing normal about it. I'm floundering most of the time, I'm so bloody tired, I have no memory, I'm clinically depressed, my body doesn't work properly anymore, I feel as if I have woken up having aged about 20 years overnight, I wonder if I'm going to see my kids grow up and become whoever they're going to be, I feel disconnected from my body and often from my inner self, I'm a cranky bitch with a short fuse, I feel like running away but suspect I might follow me.

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

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.

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...

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

49 Replies

Marianne_BCNA
Member
7 years ago
Hi @"Patti J", one of our major focuses for 2019 (we have 5 advocacy priorities) will be to work with McGrath and CNSA (Cancer Nurses Society Australia) to advocate for more metastatic breast care nurses so hopefully soon.
Patti_J
Member
7 years ago
@Marianne_BCNA. Constantly referring to "survivorship" and "end of active treatment" seems to gloss over the fact that for those of us with metastatic breast cancer there is no true "survivorship" or "end of treatment". Yet, most of the funding goes to early stage breast cancer diagnosis and treatment.
There are 6 dedicated metastatic breast care nurses in Australia. When is the funding going to change this number?
Palliative care is what people with metastatic breast cancer are given. There is no cure!
Marianne_BCNA
Member
7 years ago
@Romla - we are looking at potentially doing this in our next Beacon so keep an eye out
Romla
Member
7 years ago
@Marianne_BCNA Almost forgot someone suggested that the bcna magazine do an article to explain / discuss the field of psycho -oncology.It is heartening to many of us to know this field is acknowledged and being researched .
Marianne_BCNA
Member
7 years ago
Thanks @Romla. There is now a direct link from our new My Journey online tool to the network. We are hopng that this will alert more people to the network at time of diagnosis and make it easy for them to join. We have already noticed an increase in new members as a result. If you're interested you can go to https://myjourney.org.au/ to have a look. It's a great resource and this is where we are planning to include comprehensive info, resources etc regarding survivorship.
Romla
Member
7 years ago
Thanks @Marianne_BCNA. I’d like to add the major importance of this blog to all of us at each stage of the “journey”.Just wish I’d found it earlier as it would have helped a lot during some dark months.
Marianne_BCNA
Member
7 years ago
Hi everyone,
Thanks for sharing the difficulties you have had with receiving the acknowledgement and support for your physical and emotional needs from first being diagnosed right through your whole experience including the ongoing sequelae of cancer treatment especially with AIs, the ongoing emotional impact, sleep disturbances etc . Our State of the Nation report that we published this year based on interviews/surveys with over 13,000 people around Australia raised very similar issues to what you have raised here including the need for communication training for healthcare professionals working with cancer patients.
Here's the link to it if you haven’t already read it.
https://www.bcna.org.au/media/6656/sotn-report-lowres.pdf
As a result of our findings there are a number of advocacy issues we are focusing on in 2019.
1. To increase the number of breast care nurses, particularly metastatic breast care nurses and especially in rural areas.
2. To increase the number of Medicare subsidised allied health appointments from 5 to 10 (so if you require counselling this would be in addition to the appointments you are entitled to through a mental health plan).
3. With funding from Cancer Australia we will continue to develop the My Journey online tool so that it will provide those who have completed hospital based treatment with a comprehensive range of tools and information to help manage your ongoing psychological and physical care needs according to your preferences and inform you about helpful programs and services.
We'll keep you posted on progress in these areas and will probably ask for your assistance at some stage.
And finally, for those of you who haven't already seen it, you might be interested in the webcast from Plan B which includes a presentation from oncology social worker, Carrie Lethborg.
https://www.webcasts.com.au/planb/

Actually, I have one more link - the Australian Cancer Survivorship Centre may be of interest to you
https://www.petermac.org/services/support-services/australian-cancer-survivorship-centre
Romla
Member
7 years ago
@kmakm I don’t think submission writing would have the same impact if however ,like you have done already, we speak about it publicly/privately when appropriate .

To a degree we tend to hide this part of our life and we need to talk about it a bit more openly .There are many of us and it could make a difference .Maybe someone might hear and have a mammogram or find the blog or feel less afraid of their treatment path / life post treatment.

Its not about “ the new normal” but about normalising a part of life.
kmakm
Member
7 years ago
Don't worry @Romla! I'm not remotely qualified to do any such thing, wouldn't know where to start, would never presume to speak for others and barely have the time!
Sister
Member
7 years ago
I did have this forum pointed out to me - I can't remember now if it was at Breastscreen or at the surgeon's rooms. There's been a few people that I have mentioned it to - some responses are positive while other's are really anti. I do remember that I stalked for a little while.