From Stage 4 HER2+ to different cancer - Support for sister
Meex05
Member Posts: 2 ✭
Hi Everyone
Please excuse my ignorance in relation to Breast Cance types and subtypes.
I don’t know how to support my sister?!
Bit of an overview of her situation:- Dec 28, 2010, at 35, and 5 mths after the birth of her 6th child, was diagnosed with Stage 4 HER2 Breast Cancer. Within 2 weeks she’d had a mastectomy and lymph nodes removed. & went through the horrendous side effects of treatment.
In 2014, despite being told that the treatment would leave her infertile, she gave birth to her 7th child (Children range from 7-22yrs- they are amazing kids!)
Now 10.5yrs on, on Tue 10th August, she was told she has Stage 4 Lung cancer (1x3cm lesion and several others between 5mm & 19mm), which has metastasised to lymph nodes, hand, knees and feet. She underwent a PET scan on Friday and will get results on Tuesday.
She has lost about 10kgs in around 5 weeks.. (she only weighed around 50-55kgs- she is anorexic-skin & bone). I was (still am) in total shock.
I feel that the prognosis will be devastating to them all and my mum, whom I’m also really concerned for. We lost my dad (Vietnam Vet) in August 2007 to an inoperable brain tumour & mum had a stroke in 2014 and her health has deteriorated since, with complex health care needs.
I’m wondering if there’s some support services she may be entitled to and support groups/therapy groups, for her, her husband, the children and them as a family??
Wondering if anyone else has had a similar journey or has suggestions? I just don’t know how to help them all, other than being available if they want to talk.
If anyone can offer any advice, guidance or direction, I would be ever so grateful.
TIA x
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Comments
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@Meex05 - I am so sorry for your sister's latest diagnosis - she's been thru enough already! This mongrel disease is NOT fair at all. Well done on joining BCNA and requesting info/help for your sister. Your whole family has been thru so much as well, with the loss of both of your parents to cancer & stroke.
Whereabouts does she live? Town/city - we may have members in the area who are familiar with what local services are available for her. There is more than likely an active Cancer group who may be able to offer specific info. xx
We have a Metastatic group that you could join & you'll be able to ask more detailed questions there (it is a private group.) I will tag on one of the mods to help you join up
@Riki_BCNA Could you help @Meex05 join the group please?
Canteen is available to help for kids from 12 -25 .... check out their website.
https://www.canteen.org.au/
The Vietnam Vets association may also have programs for the younger kids ...... worth checking in with them xx
Is she already on a Care Package from the Gov - NDIS? They deal with wheelchairs etc as needed and all sorts of stuff.
Has her GP referred her to Palliative Care - to check out her house & see if there are things they can do to help her get around, or help in the house? They do WAY MORE than just 'end of life stuff' ... My husband is Stage 4 Gastric Cancer and has been on chemo for 6 months+ (he is on it indefinitely) & I've just met with the Palliative care nurse last week and she is referring us to an Occupational Therapist to arrange hand rails, non slip mats, shower chair & other bits that may be of use to him, as his disease progresses - as he is 85 and getting very wobbly and thin too.
My heart goes out to you - and all her family. As you say, just 'being there' for her (and them) - maybe taking the youngest out (if allowed in this covid lockdown, depending on where you live ...)
take care xx
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Wow! Bless you Arpie!😇
You are living your own indescribable journey with this unforgiving monstrosity of a disease, and have taken your time to give me so much information. For this I am so very grateful♥️
As far as I’m aware, there is no care package?? Definitely no NDIS- I didn’t know this was an option (my daughter is in the system and I know my sister doesn’t know the first thing about NDIS).
She lives in Henley Brook, Perth, WA.
im guessing you may be on the East Coast, with the mention of Cocid Lockdown? Hope things pick up over there, you’ve really been hit hard😔
To you, Arpie and your husband, I send my love and strength💖 I can only imagine how you might be feeling, but I do not have any understanding of the turmoil you must all be going through, the reality of your situation nor your journey ahead. My heart goes out to you, your husband and respective families.
Arpie, thank you again for your compassion and kindness in helping me, with knowing where to start, so that I can try and help my sister and her family through this devastating news and forthcoming journey.
You are an absolute Angel👼🏻😇♥️🥰
Take care & stay safe💋2 -
@Meex05...There is another organisation called "Mummy's Wish" who give practical help to mothers with cancer and at least one child under the age of 13. Perhaps you could look them up and see what assistance they could offer. The Cosmic Clowns have certainly dished out some awful cards to your family and I wish there was more I could do to help you all. This is truly a bastard of a disease as it destroys not only the person, but the whole family too. Arpie, as usual, has wonderful ideas and knowledge of how much in the 'system' works, (or doesn't work), and her advice is gold. I wish I could give you and yours a big hug, but an electronic one will have to suffice...(((hug))). Ally.5
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@Meex05 So sorry to hear what your sister, her family and you are going through. These wonderful ladies have given you some excellent advice, the only thing I could think to add is to contact a Breast care nurse through the McGath Foundation. She would be aware of support in your sisters area.
Please find the link below:
https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/
Please keep reaching out to the amazing ladies on this site, they have given wonderful support to so many of us and helped us get through one day to the next.
Do you live close to your sister? I know this bastard Covid makes everything even harder.
Wishing the best getting help for you sister and her family and your mum, don't forget to get some support for you too.
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Thank you @Meex05 - we are here to help each other - as so many did with me when I joined in early 2018 when I was diagnosed & had my surgery/treatment - and also helping me now, with my husband's illness too. xx
Just knowing that you and your sister & family are not alone - really helps, cos we understand what you are going thru.
I am amazed your sister is not already on some sort of care plan, with ready access to all that she needs. Are you living nearby?
And there is also the Otis Foundation, who have access to lovely people with holiday houses, who allow families with BC to stay in their lovely holiday houses around the country, free of charge - you just have to 'get there' and 'take your own food' - but with Covid, my guess would be staying only in WA.
https://www.otisfoundation.org.au/
then click here & click on WA - they have 2 available - one in Mandurah and one north of Perth!
https://www.otisfoundation.org.au/directory
There is often a wait list - but then again, they also have cancelations that may be available too. I hope the family may be able to take advantage of this and that your sister is well enough too.
Maybe if YOU give them a bell first, on her behalf to see if any are available sooner than later ..... rather than getting her hopes up ... as they are usually VERY popular - and available most of the year except school holidays.
You can click on both properties to see how they are set up, to see which one suits the family more.
Good luck xxx. Big hugs all around - to you as well xx
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Hi @Meex05 , sorry to hear this news, that’s really tough.
Although my cancer was stage 2 not stage 4 , I found my sister ( she is my only sibling and we are very close although she lives an hour away) a great support and help over this last year ( diagnosed August 2020).
She rings me every day and we totally “ get” one another so there is nothing we can’t say to one another, no awkward moments .
Everyone is different , but I found just having people to talk to helped me a lot , and also to talk about things OTHER than cancer was helpful , including having a good laugh ( to balance out all the good cries).
it’s hard if you can’t physically be together as that would be ideal, but staying in touch by phone ( or zoom etc if you are more of that persuasion)
Is one of the best things you can do for her.
Lots of other helpful advice from the ladies above too.
Take care and sending you virtual hugs.1 -
Hi @Meex05 here is the link to https://www.ndis.gov.au/applying-access-ndis/how-apply . I’m not sure how easy it is to navigate but I’ve had family on it recently and one in particular had a lot of home help.1
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Hi @Meex05, my husband is on the NDIS and there are three ways in which you can access it once the plan is approved.
1/ NDIA managed - all supports (home help, house and yard maintenance, person care support, assistive technology etc) must be provided by someone who is registered as an NDIS provider - this usually means they charge more and you get less out of your funding budget)
2/ Plan managed - a third party company (we use AusCare) manages your plan, deals with the invoicing and what comes out of what category of funding. With plan managed, you can use any company/organisation/individual as long as they have an ABN to provide an item or service. This means you get more bang for your buck, you can choose who provides for you and you have more freedom of what happens with your plan.
3/ Self managed - this means you do all the invoicing yourself and have to do all the record keeping. There are so many funding categories within categories, you really have to be on top of everything. For me, it's too much, which is why we chose plan managed.
Like all things government controlled, there are a lot of hoops to jump through initially but once you do, the NDIS is invaluable.
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Cancer Council WA
https://www.cancerwa.asn.au/
Would be also good to touch base with and ask what they know of locally for your sister and family to access.
https://www.cancerwa.asn.au/patients/support-and-services/
If it has metastasised from the Breast Cancer then the she is entitled to supports from the Breast Care Nurses.
Hope these links help you find supports that are local1 -
Hi @Meex05 here is the link to https://www.ndis.gov.au/applying-access-ndis/how-apply . I’m not sure how easy it is to navigate but I’ve had family on it recently and one in particular had a lot of home help. Hope this helps you.1
