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

AllyJay

Thanks friends for your support. The point I was trying to come to was that so long as you have one patient complaining to their doctor about side effects, sleeplessness, sexual difficulties and so on, there seems to be the common thread that either they are imagining it altogether, or perhaps they have a teensy weensy touch of this or that, but the literature doesn't support the patient's statements that this is a common and widespread problem. When pressed about the patient's statement, and it comes to light that they are members of groups such as ours, (but not exclusively) it seems that dismissive statements are made. such as it being apocryphal or exaggerated symptoms put forward to support groups as a sort of one uppance of what a dreadful time we're having. Of course "Oh did you get that off of Facebook or Dr Google is just as common a put down. As in my reference to my past, as long as people were isolated from one another, they couldn't share common problems. They weren't aware that they weren't the only person suffering thus. As soon as people came together, these things came into focus as being far from isolated, or highly unusual, and probably stemmed from problems north of the eyebrows. In today's world of the internet, the medical profession can't still hold their previously godlike status and hide behind their white coats, whilst paternalistically patting wan little hands. Patients are becoming more empowered and if certain personages feel threatened, they belittle the person so doing as being keyboard doctors who really should take up tatting or somesuch, and leave the medical stuff and decisions to those with all that alphabet soup printed after the names stated on the gilded degrees hanging on the walls. Rant (sort of ) over.

arpie

@Zoffiel - Even Queen Victoria had Post Natal Depression & as it wasn't 'recognised/treated' - she went from a loving caring mother to a bit of an emotional wreck with no real connection with her children from then on - much to their detriment!         I bet there are still many who are not diagnosed  & treated for it, even now.  

 

Sailor

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.

Sister

@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.

kmakm

This from @Sister should be given to everyone clinical person involved with treating breast cancer. It perfectly sums up how so many feel as newly minted survivors, and why a bit more support is required in this phase.

"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."

Romla

I have taken the liberty to forward this thread and p25-27 of Early days on Letrozole to both Wendy Ingman and Professor Ian Olver here in the hope some may integrate into medical training here in SA. Worth a try.

Patti J

I know the moderators mean well but seriously: 44 days to complete a summary! I would not ever be employed if I  did that.

Sister

Good on you @romla

Flaneuse

@Patti J Sorry - I've missed something. What does the 44 days refer to?

Patti J

@Flaneuse. On 13th October this year, there was a Metastatic Breast cancer forum. It was not live streamed as the Plan B conference at the Field of Women and the Young Women's conference on 14th October were. The plan C conference  at the Field of Women was not live streamed. The summary arrived nearly 2 months later. 
44 days since 13th October, I  am still waiting for the summary of the 13th October forum. This was to be organised by either @Rosie_BCNA , who attended this forum or @Giovanna_BCNA
This is just another disappointing aspect of life as someone with mets. 

Flaneuse

Thanks @Patti J - now I understand.

~Millie~

It was good that nurses, docs, etc asked how I was doing, and I would be honest about the symptoms/side effects, but every time they uttered ‘that’s normal’ or ‘that’s unusual ‘ I’d start to cry on the inside. Except once, when the crying on the outside happened. I was then suggested  to get my GP to organise a mental health plan. The last thing I needed were more appointments. 

There is nothing ‘normal’ about getting BC, even more so for me since I’m 42 with no family history. There is nothing normal about getting radiation damage to your lungs - I know no one else who has had this. There is nothing normal about struggling to use a calculator because your working memory isn’t working.

Telling me my side effects are ‘unusual’ is not helpful in addressing the symptoms, least of all the impacts of hearing this on my mental health. 

Then there is the ‘everybody is different ‘ statement. Of course we all are. I came to interpret this as ‘we don’t know’ which would have been a more honest answer. 

So, skip these words and phrases. Focus on what changes can be made to the treatment. Tell me how long side effects are likely to last. 

arpie

@~Millie~ - my girlfriend also had her lung affected by radiation - tho it was pooh poohed by the medics as being the cause.  She was diagnosed with lung cancer immediately under the primary radiation 'spot/target' for her BC some years before .... luckily, it was found early (by accident) when they were doing a CAT scan for something else, so had successful surgery for it 3 years ago.

take care

kmakm

With a Royal Commission into Mental Health about to occur in Victoria it seems to me to be an ideal time for the BCNA to move on this subject.

The extremes are what grab the headlines. There will be a lot heard about suicide. We all know that here, a very small slice of the breast cancer cohort, some among us have had suicidal thoughts.

The pink 'marketing' of breast cancer belies the seriousness of not only the disease, but the mental health aspect of it as well.

kmakm

Great idea @Romla.