Access to NDIS?

StarGirl

I should maybe post this in the metastatic group, but it’s fairly quiet there so I thought just a general post might be more visible. To summarise, I was diagnosed stage 4 de novo (liver mets) HER2+ in 2015 at age 40. I did 5 months of paclitaxel and have continued on with 3 weekly Herceptin and Perjeta since then. My HER2+ cancer has remained stable, but in 2018 I was diagnosed with a new primary breast cancer, this time ER+ and HER2-. In 2019 I had a left sided mastectomy and full axilla clearance and 25 sessions of radiation. In 2021 I had a new recurrence of the ER+ bc and had more lymph nodes removed (so clearly not as complete an axilla clearance in 2019 as I had thought). In November 2023 scans picked up new tumours in the lymph system and chest wall (assumed but not proven to be ER+), so I am now on Tamoxifen in addition to the Herceptin and Perjeta. I have been soldiering on doing everything (childcare, cooking, cleaning, etc ) but am really (REALLY) tired and living with low level, but constant, pain and it’s becoming a struggle. Dealing with cancer, treatments and their side effects for almost a decade has taken its toll. My boys are 12 and 14 (and unaware I have any health issues) so that in itself is exhausting. Has anyone had any success accessing NDIS support? I could really use some help. 

iserbrown

https://www.ndis.gov.au/applying-access-ndis/am-i-eligible

Hope that helps and perhaps look for a local office to ask

I have a sister on NDIS,  lots of hoops to get through 

Take care

Cath62

Hi @StarGirl,

You sure have been to hell and back. The mets group does seem almost silent doesn't it. Very very occasionally I see a post but I feel our group is out to the side and a bit forgotten in some ways. I have posted here too as I usually get more help and responses. 

I understand your exhaustion and how this disease takes its toll. I had BC in 2020 and diagnosed with mets last year. Prior to 2020 I had 4 malignant melanoma and numerous other surgeries. I think I have had 12 general anaesthetics in just under 20 years, not to mention chemo radium and other bc treatments which continue. It wears you down. 

I have often wondered about the NDIS. Our treatments and care costs a fortune and getting help doesn't come easy. 

I think you would need your dr to say you have a disability and you would need to meet the criteria- see the link above. Maybe give the bcna hotline a call to see what help you can get. 

Also you may want to tell your children. While you think they may not know, at their ages they are usually very aware of a parent's struggle.  Bnca would have information on telling families. See link

 https://www.bcna.org.au/resource-hub/articles/telling-your-children/#:~:text=1800 500 258&text=Telling your children that you,sense if something is wrong.

The cancer council also has information to help and Canteen helps too with children of parents impacted by cancer. 

You can't do this alone. It's too hard. Have you got friends or family that can help you? 

You can call bcna or the cancer council to see what can be offered to help you. 

Do you have a psychologist or counsellor or a breast care nurse that you can discuss this with? Maybe your oncologist can refer you to a social worker to help you navigate things to help you at home.

Where are you located? Maybe other members know of what's on offer in your area to help. 

Sending you much love ❤️