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

Romla
Member
7 years ago
Hold that thought @Flaneuse and @kmakm - we all need to think about drawing attention collaboratively to these issues.In a way we are lucky in that we have access to the blog to share and support each other - am not sure that this type of vehicle is available to those with other cancers .Though I do wonder how many bc people know of it as you basically need to find it yourself.
kmakm
Member
7 years ago
@Flaneuse Ah!
Flaneuse
Member
7 years ago
@kmakm Make a submission to the mental Health Royal Commission.
kmakm
Member
7 years ago
OMG @Romla...

"Routine distress screening throughout the cancer process (e.g., diagnosis, treatment, survivorship) is crucial to identifying individuals who are already struggling with symptoms of depression or anxiety or for identifying those at risk for psychological issues related to cancer. Historically, communication about psychological adjustment was lacking between patients and providers regarding topics related to adjustment to diagnosis, living with cancer, living cancer-free in survivorship, or transitioning to end of life care." (Wikipedia)

I do not think "routine distress screening throughout the cancer process" has made it to the BC world...

One of my oldest and dearest friends is a professor of psycho-oncology. She's a world leader in the field.
kmakm
Member
7 years ago
Do what @Flaneuse?!
Beryl_C_
Member
7 years ago
Romla - thanks for the reference. I'm of the opinion that this topic could be a focus for Beacon - particularly information on psycho-oncology, in 'easy speak' language.
Flaneuse
Member
7 years ago
@kmakm You're in the ideal place and headspace to do it ! xox
Romla
Member
7 years ago
Here’s some information about psycho - oncology for those newly in the know like me.

https://en.wikipedia.org/wiki/Psycho-oncology
Romla
Member
7 years ago
Ian Olver is interested in psychoncology so here’s hoping.
kmakm
Member
7 years ago
Great idea @Romla.

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

49 Replies

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