Support needed from health professionals during treatment and beyond

I’d like to add to the list above that after all active treatment ends the vacuum we seem to enter where we have changed even though the world has not.I was distraught , lost and very low - thinking my life was over and this was before I started hormone therapy a couple of months later.There seems to be little done to check with our mental/ emotional state after getting thru surgery ,chemo and radiotherapy- you are left up to your own resources and dependent on your own resilience which is badly shaken. That to me was the big gap of which very little is written or spoken.

Well said @kmakm,

As far as the BCN's go.  Mine were great.  In saying that though there are two of them so when one is not available the other one is.  It's a bit of a hit and miss, depending on who you get and how big of an area they need to cover, how overworked or jaded they are.  Unfair, yep.  The only thing that will get more nurses is obviously more money and the only way they know if their nurse is not up to par is if someone says something.

I have bemoaned the lack of belief about the cognitive thing before.  My onc said my case was "extreme".  Bollocks.  2 minutes on google and you can see it's not.  

No one ever said anything about it to me or how badly it can affect your vision. 
 I walked out with a list for two drugs Tamoxifen and Zoladex & exemestane.  The side effect lists for both were almost identical and contained 5 or 6 common  side effects and had to make the choice. These lists almost trivialise the impact it can have.  You know,  hot flushes, dress in layers etc etc.  No where was it written they can make you throw up, dizzy, nauseas and loose your balance.

I  had to do my own research on why this was happening, then got fobbed off at both the GP and the onc and was just left to my own devices as how to manage it to suit me.

I guess to be fair, there really is only the pain side of things they can give you a script for.  No doctor can fix your libido or the fog  that runs in your head, can't do anything to help the hot flushes either.  They can give you some pills that might help the pain and antidepressants and that's about it.  So I guess there are only two choices that they can give you.  Take the pills, don't take the pills.  

@"Patti J" ,   It must seem quite trivial the things we complain about from your side. I can understand that and can only imagine how that must make you feel at times. Enjoy your yoga class lovely.

Hugs
xoxoxxxx

@Sister Yes yes and yes. That's precisely it. The word 'piecemeal' is perfect. And as always, you sum it up perfectly.

We've discussed before on the forum the uneven nature of breast care nurses, access and quality. Mine was wonderful but she was always too busy! We need more of them, for rural and Stage 4, let alone survivor support.

Maybe one day.

@Sister. I am still very disappointed about the breast care nurse from the McGrath Foundation that I  had to deal with. She fobbed me off because, in her opinion, I  lived too far away.
I am also disappointed with the Encore program which I  started attending, which  seemed to be designed specifically for unfit people with early stage breast cancer and was run by someone acting like a child!
As someone with mets, there is even less support. Many people don't  even know what metastatic breast cancer is. And because I  don't  look sick, even less is done for me.
I read the forum posts and wonder why people complain so much. Letrozole is only one drug. What about all of the other ones that those of us with mets have to take? These get changed regularly because they stop working or the side effects are not good.
Don't  get me started on  all of the people who take sleeping pills and strong pain killers! Why? That is why you can't sleep!
Then there are the never ending blood tests in the one arm that has been used for I.V. chemo. and the monthly injections in the tummy.
Or the CT scans and MRIs and bone scans that need to be done.
This is all after early stage breast cancer and the numerous operations, procedures and medications involved with that.
Now, I am on a drug which the oncologist is not sure will work because I have invasive pleomorphic lobular carcinoma!
Rant over! I am off to yoga!☹

It does sound like a great idea @kmakm.  I get enraged about the piecemeal approach to treatment across Australia.  For those in rural areas it's atrocious - and that's just for the basic stuff.  When you get into whole self well-being, it's even worse.  I've often said that one of the hardest things to deal with is that before I got treatment, I felt well.  Now, I don't.  I have nothing but praise for my medical team but it's still not enough.  And having to be pro-active when you can barely focus on brushing your teeth, is a nightmare.  I know that it is not possible to have a one-size-fits-all approach but surely it should be possible for there to be a co-ordinating well-being person, during and after active treatment.  And breast care nurses?  Well, I was treated mostly in the private system (except for rads) in a capital city and I've never felt that I had a breast care nurse other than in the hospital at the time of surgery and a one-off phone checkup a few days later.

Coming up to the six month mark of taking Letrozole, so I don't think I'll class myself as 'early days' for much longer.

Read this in the paper the other day. It's about PMT, and how hormones affect it. 

http://www.essentialkids.com.au/health/health-wellbeing/why-are-some-women-more-affected-by-pms-than-others-20181119-h183gw

Quite interesting to read it through the experiential lens of artificial menopause and AIs/Tamoxifen. But it was the last line that got me...

"Above all, it is important to recognise the links between hormones and mental health."

It's written by a professor of psychiatry at Monash University, so someone of considerable expertise.

One of the things that makes BC survivorship difficult for many, is that our ongoing medication messes with our hormones. And that messes with our heads. At no point did any medical person I've seen mention this to me. My oncologist spoke briefly about the aching joints. My BC alluded to difficulties but didn't specify what they were. I know they have to tread the fine line of encouraging you to take it but not scaring you too much, but broadly speaking, I would have felt better if someone had had a more candid conversation with me about this. Instead I feel it's often awkwardly ignored.

It makes me recall that study about how survivors were frustrated with the lack of attention paid to their CRCI by their doctors.

I know it's difficult, and doctors can't be all things to all people. However in my limited but sadly intimate experience, BC, despite being a physical disease, is an illness of the whole person. It seems to affect so many parts of our lives. Our physical selves, our sexual selves, our emotional selves. Our identity, our femininity, our energy, our self-esteem and our cognitive function. Not everyone of course, and not all of these for everyone. But nonetheless, a lot of us.

I'd like survivorship to be draped less in a triumphant pink cloak, and instead to be supported more. Wouldn't it be good if after finishing active treatment, that long gap before you see your onc & BS again was punctuated by a standard check up with someone whose job it was to enquire about how you were managing survivorship? What's aching/itching/swollen. What your mood is like, if you're struggling with anything emotionally. How your intimate life was going. How you're managing the hot flushes, and all the myriad of other issues that crop up. And then if you needed it they could point you in the direction of someone or a service who could help.

There are so many services on offer but they're disparate and you miss out on things if you don't hear about them. Some people are pro-active about seeking help, they have no trouble speaking up. But others need prompting. You might not be able to bring yourself to raise a sexual problem, but if asked, you may be able to answer.

It'd kind of be like that six week check up after giving birth. It could be with your GP, or breast care nurse (we'd need more of those).

You're thrown into a life that is so different that it gets called 'new'. It'd be nice to have a professional check in on you and offer direction and support as required.

I know it's a pipe dream but there it is. Wishful rant over!