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ruralmum2
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Joined 2 years ago
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Public patient Private radiation (Toowoomba)
Hi everyone, Just wanted to share a useful bit of info for anyone going through something similar. My nearest radiation facility is 4hrs drive away in Toowoomba, but it’s private & I am a public patient. I went for my planning appointment this week & at the end I was taken aside into a small office & given my ‘Estimated Fees’. The admin officer asked if I had means to pay $6000 on day 1 upfront, and that would then be rebated through Medicare. The grand total of 3 weeks treatment was $15000. I said that I could maybe borrow money from a relative. I felt very patronised & have been stressing for the past few days about how to get that money upfront. To top it off my (old) car broke down on the trip home, so now I need to buy a new one - ugh! I went to see my wonderful GP today to ask him to sign a Compassionate release of Superannuation form. He said ‘You shouldn’t have to touch your super, you’re a public patient!’ He rang the private hospital and clarified that it would be difficult to access money (particularly after being off work for surgery & chemo since May 2024). A lovely admin phoned me afterwards & explained that Medicare can fund the upfront payments. I just have to sign a form that they email me & each week of treatment I will have the funds from Medicare land in my account & it will then transfer across to the private hospital. I will only have to pay a total of $1000 over the course of my treatment. Phew! I was so stressed about this. Apparently this is not an option for all patients, but I think it’s important info if anyone else is in the same boat. The last thing we need is extra stress!Re: 16 Weeks Pregnant and diagnosed with aggressive hormonal breast cancer
Oh @Emma1113 I wish I could give you the biggest hug. I’m so sorry this is happening to you at what should be an exciting time for you. I have nothing much to offer you in the way of comforting words, but I did meet someone going through a similar situation to you. I am 44 & have 2 older children & was feeling very hard done by when I was in the ward recovering from my second surgery to remove lymph nodes. Across from me was a lovely younger lady who was diagnosed during her pregnancy, she had a safer? chemo up till 36 weeks, then Bub was delivered. She had her husband & her Mum caring for Bub back at home & she was now having more aggressive chemo. I felt like I had nothing to complain about. All I can offer is to reach out to your support network & ask for the help & caring you need right now. The BCNA hotline is amazing, if you don’t have a McGrath nurse, look up the website & access one - public or private they will support you. Rest & be selfish. Thinking of you xoRe: Lego! Feel like a kid again
Thank you arpie, haha, I think I deserve all the Lego 😂 Thank goodness the dance costumes are bought ones that only need minor adjustments or ‘bedazzling’, I’m not much of a seamstress & my kid would probably be dancing in a hessian sack otherwise 😂 Seriously though, I told my eldest daughter (13) after my diagnosis (start of April) that the highlight of my year would be watching her at her concert. I shed a few tears on the night of her final performance. I was so proud & so glad she had the ‘normality’ of dance to carry her through this otherwise trying year. Thankfully I’m now coming to the end of my chemo (3 doses to go!), then just have radiation & hormone therapy to go. There’s light at the end of the tunnel, phew!Re: Experience with suction/negative pressure dressings
terrianne said: So last Thursday I had a bilateral "Goldilocks" mastectomy - it's Tuesday now, so today is the fifth day post-op. I had three nights in hospital and was discharged on Sunday, and every day has felt like a battle with these dressings. It's a system called Prevena that puts a foam layer over the sutures, and then a plastic dressing over that so that the attached pump can then apply a gentle vacuum. Even in hospital, every day has brought patches to the edges to try and maintain a seal. It holds if I'm sitting down but the moment I stand up, the pump goes off, and I hear a little whistle from a new leak somewhere in the dressing. It's getting pretty frustrating - I can't shower without it going off and even just doing a wash at the basin triggers leaks. And forget going for 'gentle walks' - I want to, but not if the dressing's going to leak the whole damn way. I'm due to have them removed on 9 December, so six more days with them. If I thought I was happy to have drains removed, that'll probably be nothing compared to the joy of getting rid of these dressings. Has anyone else had experience with suction/negative pressure dressings like this? Terrianne, I had a prolonged experience with dressings after my lymph node clearance. It was so frustrating, especially as I’m a nurse & thought I’d be all over it! Make sure that if your wound is still oozing that the skin around it is well protected with barrier wipes (ask the wound nurse). Mine kept breaking down at different times, especially if the wipes weren’t used. I’m healed now - with an ugly scar, but it was a very trying time. I wanted to exercise, but didn’t want to risk my dressings getting sweaty or coming off. Hoping you don’t have the same dramas, but if you do, feel free to message me if you want to vent xoRe: Lego! Feel like a kid again
Tri said: Excellent idea - and the humorous theme along with colour sounds like it could be uplifting. I had a bit of neuropathy in my fingers and I think Lego would have been very helpful “exercise” for strengthening the fine motor skills! Yes, I think I need to pick it up again. My fingers seem ok, but perhaps have a slight sensation like they’re swollen at the tips, so doing Lego again would help. I’ve had to hand stitch & hot glue my daughter’s dance costumes recently, so that was a good measure of my hand dexterity. There’s some nice mini plant kits & a cherry blossom set I’ve had my eye on in the Lego kits.Re: Lego! Feel like a kid again
MelV83 said: I bought some of the plain red roses and made those to go in my vase of fake flowers. I’ll try to take a picture tomorrow- Lego is fun! Oh nice! I put my Lego aside for the last couple of months, but need to get back into it. Chemo had me in a bit of a rut until recently, but I think it would be good for my fingers (neuropathy). I’ve been eyeing off the succulent kit - wondering if I should buy it for my teenager, or maybe myself for Xmas. Would love to see your roses if you have the time 😊Re: Post surgery & deodorant
I second the MooGoo deodorant! I just put it on avoiding any surgical wounds & it did the job. I avoided my old sprays for quite a while, have only gone back to them occasionally if I know I’ll get a sweat up. The Moo Goo does seem pretty good though, just feel a bit yuck using roll on on a hot, sticky day - personal preference.Re: Any tips to prepare for surgery and returning home
Hi melsev, I think your idea for your bedroom sounds like a great idea. Can your dogs possibly be looked after by friends or family for a couple of weeks? I was super careful with my cat & my mini foxie, as I had drains in after my surgeries. I think if you can explain to your kids in an age-appropriate way, they will hopefully help or be more gentle with you. My daughters are 13 & 11, they have been pretty good, though I have had to remind them a few times to help out with jobs around the house. I found a body pillow & the bed to myself helped me to get comfortable, though I only had surgeries on one side. I think a recliner in your room would be a good idea, as if you aren’t comfortable in bed, at least you can just slip into the chair. It’s been a few months since my surgeries & my chemo brain is making me forgetful, but I’ll rack my brain & let you know if I think of anything else. Take care, thinking of you xRe: 2nd op
Sorry you’re going through this! I’ve had 2 surgeries in June & July for mine & had a small cavity open after a wound infection & after starting on chemo, so had to deal with delayed healing. I’ve bought myself a body pillow (Kmart) for side sleeping on my good side without putting too much pressure on anything else. I also have a boomerang pillow plus a normal pillow on top under my head. Then I have my little underarm cushion from my McGrath Nurse to support the wound. Previously I only ever used one pillow, but here I am & it’s helping me sleep. I did consider buying a bed wedge from a medical supplies place, but didn’t end up doing that. I’ve also heard of people sleeping in a comfy recliner. Whatever gets you the most sleep. My wound is so close to being healed now. Hoping for a good outcome with your second surgery. Big hugs to you xoLego! Feel like a kid again
Well, I’m 5 months in to my BC journey & am going to be off for at least another 5-6 more months (2 surgeries & 2 x rounds of AC chemo down, 14 rounds of chemo left, then radiation, then hormone therapy). I kept stocking up my spotlight online cart, but then I thought with my track record of not completing much craft, I turned my idea to Lego. I bought the kit of ‘The Office’ & I think this is something I’ll actually finish! The kids are sad because I told them they could only play with it if they were in character 😂 I’ve let them build the characters & help pass me pieces, but the structure is all mine. I’ve done Michael & Pam’s work areas. I’m trying to pace myself though. We’ve got to treat ourselves right, this is a crap thing to live through. Any other Lego kits anyone has completed or can recommend?
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Connecting rural, regional & remote areas
We understand that living outside major cities can bring unique challenges when it comes to accessing care, support, and information. From long travel distances to limited local services, these experiences can feel isolating—but you're not alone. This is a space to connect with others who truly understand what it’s like to face breast cancer while living regionally or remotely. Share stories, ask questions, and support one another through the frustrations and the wins - this group is here for you.Let's talk: vaginas, menopause & me
PRIVATE GROUP. This group is a safe, supportive space to talk about sexual health and emotional wellbeing during and after breast cancer. We discuss topics like menopause, vaginal dryness, pain during sex, UTIs, and changes in libido, and share ideas and products that may help. Whether you're navigating intimacy with a partner or reconnecting with yourself, you're not alone here. This is a place for open, respectful conversations and shared understanding.Invasive Lobular Cancer (ILC)
This group is for anyone diagnosed with invasive lobular breast cancer (ILC), which begins in the milk-producing lobules and accounts for around 10% of invasive breast cancers (US statistics). Connect with others, share experiences, and access peer support from people who understand the unique aspects of an ILC diagnosis.Flat Chat - no breast reconstruction
PRIVATE GROUP. This group is a safe space for those considering, actively choosing or not have had a choice to stay flat after a mastectomy. Whether personal decision or one shaped by circumstance, you're invited to connect and share your experience and images with others on a similar path. Information shared is based on personal experience and not intended as medical advice; always consult your healthcare team for guidance. ⚠️CONTENT WARNING⚠️Posts may include images of surgical outcomes, which some may find distressing. If you need support, please contact the BCNA Helpline—we’re here for you.
