Frustrated

LizM

It is bad enough trying to cope with diagnosis,  feeling unwell, only having limited capacity to walk and still maintain some kind of family life, but I would just like a doctor in my court fighting for my wellbeing.

First it was the public/private division. I was channeled into private last time before I knew that it didn't seem possible to get back to the public system. It ended up costing us at least $20000 given the gaps of private health insurance. We thought it was okay, I was young,  about to go into full-time and I would have years of working to build our financial base. YEAH RIGHT. One year of working and now I have secondaries. I was determined not to go down that path again.  We just can't afford it.

So I eventually get the medical world to accept that I want to be in the public system. I thought okay now this group will look out for me. YEAH RIGHT. My hospital doesn't have radiotherapy so off to another hospital which was fine until I had general questions about living with advanced cancer - then they directed me back to my oncologist. Only my oncologist has put me forward for a trial,  so she has basically passed me on to the trial people.  I'm not her problem again until the trial is done. When I met the trial people, the research fellow and the clinical nurse, they were nice enough but they were interested in their data not how well I live. Okay to be fair this might change and certainly now that I know that they are my point of call I will be hassling them.

My GPs are nice but not forceful but I plan on meeting with them and pushing to see what they can do.

We feel frustrated. I read the excellent post from last year on the invisibility of secondary cancer and it really captured how I feel. I just have to trust that I will find the medical support I need. 

Cate64

Hi LizM,

I feel your pain & know how completely frustrating the whole exercise is.

Nobody wants to be responsible & palms you off onto the next person, there is no one to call with a question i might suddenly think of. I never know which Oncologist I am going to see in clinic & each one tells me someone slightly different.

The whole system is flawed.

Cate

 

Marlee

Hi

sounds awful and so frustrating !!

Im sorry I don't have any ideas to help you. 

It sounds like we need some awareness into this for those living with advanced/secondary breast cancer?

I hope you find that team soon 

xx????

Danielle_BCNA

hi LizM

BCNA recognises how frustrated women with secondaries can feel and it is very true that many people talk about feeling invisible and lost trying to navigate  a very complex health system. We are working hard to bring this to the attention of policy makers and health professionals in order to bring about change and improve services for people living with secondary breast cancer.  We are always looking for individual stories from women to be able to strengthen our advocacy efforts. If you are interested in helping with this, please message me privately and we can connect and discuss further.

Best wishes

Danielle

 

LizM

Thanks for your support.

I don't understand why you can't know or request an oncologist in a clinic - afterall we need to build a relationship with a doctor we feel comfortable with. When I go to a general practice clinic I can request which doctor I want to see. Does anyone know why that isn't the case in hospital clinics?

It makes me think that it might be helpful to imagine what the system could be like. 

I guess I envision a system where people with secondaries are immediately connected to a clinic that allocates a case manager/advocate who coordinates all the different specialists and services that we need, that can provide information,  strategies and support to allow us to live as well and as long as we can. 

I would also like it to be a badge of honor for clinics how long and well people live with secondaries.

I think change requires a dream and vision of what things could be like. 

LizM

Thanks Marlee,

I like your flower emoticons.