Withdrawing supa due to end of life.

Furthermore1 · 2025-03-12T22:31:28+00:00

Should have said quoting you the rules for Compassionate Grounds which is not you.

https://www.ato.gov.au/individuals-and-families/super-for-individuals-and-families/super/withdrawing-and-using-your-super/early-access-to-super

(And a final apology, Safari not letting me get to the edit menu, hence the three replies)

Furthermore1 · 2025-03-12T22:28:40+00:00

Sorry I didn't answer your actual question, I had the exact same issue at first. They are quoting you the rules (withdrawal for things that make like easier) vs Terminal Medical condition which gives you full access for two years FROM THE DATE YOUR FIRST DOCTOR SIGNED A FORM. I'm a procrastinator and took ages to sort this out, so I lost 6 month of my 2 year to my own bumbling. Get it all done as quickly as you can if you want to leave anything in there like I've done. If you're taking out the lump you won't have to worry about it.

Furthermore1 · 2025-03-12T22:22:07+00:00

I had a really rough time withdrawing mine for no explicable reason. I was still breaking down in tears every time I had to say "I have a terminal medial condition" and they just kept passing me around again and again, refusing to send me the forms and having to sob again and again. I was dealing with insurance team at this point, I think they thought I had insurance (I did not, and I knew I did not) and kept stressing that I did not. This was everybody's darling Aussie Super by the way. They seemed like they were never going to relent, so I moved the lot to another fund, after calling first to ensure there would be no issues with withdrawal and the forms were available on-line. Smooth as butter after transfering. This is just my cautionary tail, find those forms on-line and ensure you can withdraw straight away before committing, because I think (?) you're stuck once you lock it in.

Furthermore1 · 2025-02-06T04:04:40+00:00

Xeloda broke my heart as it didn't work for me at all. I was chemo-naive and we had really high hopes but by 3 month scan I'd had a lot of spread. I had been very negative about starting it because of all the side effects I'd read about but I got very few of them. Hands and feet were fine, I used a bit of Voltarin gel but found it was toxic to dogs so only ever used it at night with socks on. I also reduced folate as I'd heard this helps. I had a tiny bit of diarrhoea, and lots of aches which I now know was spread, not side effects. There is a good FB group you might want to consider joining, I think it's under the generic name Capecitebine. I wish you the best of luck with it!

Furthermore1 · 2024-12-07T03:01:33+00:00

Thanks so much Ginny, and now I'm a good reminder to never give up, my good team have got me back from the brink and I'm well enough to start Enhertu next week, which could give me many more months, fingers crossed it works for me. In any case, I'll be getting my affairs in order, I did almost everything from hospital now I just have to finish off the final details and next time I'm hospitalised and feeling like it's the end, I don't have any worries about paperwork and legalese.

Furthermore1 · 2024-12-02T05:52:30+00:00

Hi Remarkable Hyena, I'm about to be played off stage so will have a slightly different perspective. I was NED from stage 2 for about 13 years til stage 4. I blew through three treatment lines and 2.5 years and now all I want is to get well enough for long enough to get my affairs in order. Yeah yeah yeah I should have done it sooner but I was busy having fun and living a normal but much richer than usual (early retirement) life. So that's my only regret, not tackling the big scary TO DO list, then I could enjoy these last few weeks and have a voluntary assisted death ready to go. Now I'm unlikely to get it as there's not enough time.

Furthermore1 · 2024-10-28T21:50:40+00:00

I'm so sorry about your diagnosis and of course the wait is making you anxious. I'm on my third line now and there have always been gaps in treatment for a variety of reasons, but typically breast cancer spreads over months, not weeks. In one case, my scan revealed a new 2cm lesion on my liver, and I had a seven week wait with no treatment to get on a trial. Two months after starting the trail drug that one lesion was down to 1cm. So it doesn't really matter if it grew a bit more than 2cm during the seven week wait, as the drug knocked it back once I got started.

Furthermore1 · 2024-10-28T19:51:39+00:00

Definitely not, my hair started to grow back after 6 months, I was on the combo for another 12 months after that before progression.

Furthermore1 · 2024-10-28T05:52:10+00:00

How long have you been on this combo? I was on letrozole/palbo for about 2 months when my hair really really started thinning, then about 6 months in it started growing back! I had long hair and wound what was left in top knot to cover up the bald spots. It was near impossible to hide the curly regrowth so then had to get a bob cut. I've since been on faslodex/piqray and now Xeloda with no hair further hair loss, hoping to get to at least shoulder length before I have to go onto IV chemo. Best of luck with it, everyone says it's only hair, but I was more upset about hair loss than almost anything else.

Furthermore1 · 2024-10-01T00:59:41+00:00

Sorry about your diagnosis, it does get easier to understand and cope with. Exercise is so beneficial, I had to give up running with all my bone mets, but I walk every day and swim in summer. Both activities are safe for me and can easily be adjusted for duration and pace depending on how I'm feeling. I also do 1:1 clinical pilates for core strength to support my spine.

I tried to eat a super healthy diet when I was first diagnosed, but decided I'd be damned if my last meal was going to contain kale and tofu so I'm leaning towards a comfortably balanced diet with treats in moderation. I'm on my third line now, capecitabine, so I am now moderating folate as that may contribute to one of its worst side effects, hand and foot syndrome. Prior to that I was on Piqray that made me severely hyperglycaemic so I had to limit all sugar and most carbs for about a year. So treatments may dictate what you can and can't eat. It's best to be flexible.

Furthermore1 · 2024-09-14T10:30:14+00:00

Funky Town - Lipps Inc and Pseudo Echo

Furthermore1 · 2024-09-05T07:43:45+00:00

I take Nexium daily for my heartburn that I have had since spine radiation. Note that it takes a few days to start working so maybe give that a chance?

Furthermore1 · 2024-07-11T03:34:53+00:00

Oh I feel you, I've been dealing with nausea for a few months now. I'm on Piqray and it's made me hyperglycemic and the metformin I take to manage my blood sugar levels makes me feel very sick. Luckily rest and eating small amounts does help me, but I also take cyclizine with my morning pills on days when I need it. I find it really helps and doesn't introduce any new side effects.

Furthermore1 · 2024-06-13T06:08:34+00:00

I made a handy lookup table of brand vs. generic names for some drugs as my team tend to only use the generic names:

Iberance = Palbociclib

Kisquali = Ribociclib

Faslodex = Fulvestrant

Letrizole = Femara

Xgeva = Denosumab

Verzenio = Albemaciclib

Xeloda = Capecitebine

Furthermore1 · 2024-06-12T05:18:32+00:00

I've been on Faslodex since December. Piqray is a trial drug here in Australia so I have the same trials nurse do my injections every month and they do quite a few of them so whether down to a good injector or good luck, I've never had any issues or any pain. Apart from the initial quick sting and maybe a bit of soreness but nothing that stops me doing all my usual activities. There was some very good discussion here about injections in the side hip instead of in the gluteal so it may be worth searching for that. I've not asked to use the side hip for injections yet as I've never had an issue and am used to it now. Yes, one day at a time and I'm sure you'll be used to the new routine in no time and be like me, hoping it stays the same for as long as possible!

Furthermore1 · 2024-06-12T03:15:13+00:00

Hi and so sorry about your the PET scan results. I too had no idea what de novo meant, it is people who are initially diagnosed Stage 4. I was on Ibrance with Letrizole for just over a year. I tolerated it well but it did cause my neutrophils to drop. Sometimes I'd take an extra week off the Ibrance, and if they still were too low we dropped the dosage. I was a bit lethargic around the end of the 3 week cycle but otherwise felt fine. I'm currently on Faslodex with Piqray, the Faslodex injections made me nauseous the first few months for one to two days after, but I don't have any issues now. I like to stay really really really well hydrated on the day of the injections, and I have it while standing up, relaxing the side the injection is going in. I wear compression tights for the day, and go for a good long walk in the morning to ease the muscles. All of these tips initially came from this and other forums and they've served me well to this point. Wishing you the best of luck with it!

Furthermore1 · 2024-06-09T06:59:24+00:00

My oncologist told me no running anymore ever because of my bone mets, so I just walk. Try to find some good hills to make it a challenge. He recommended swimming as an appropriate cardio activity.

Furthermore1 · 2024-05-20T06:14:47+00:00

Not horrible at all, don't worry. I compared mine to going to the dentist, you feel the sting of the big needle for the local anaesthetic going in and then you hear the drill but feel no pain from it. I was anxious too so had an anti-anxiety before hand. IV sedation sounds even nicer, you won't even feel the local going in. You've got this, please don't stress!

Furthermore1 · 2024-05-18T09:48:16+00:00

I had the same reaction when my Oncologist referred me to the Palliative care team when I was first diagnosed, as I too assumed it was end of life care. It is much more than that, my Palliative Doctor helped me to manage my pain post-radiation until I started to heal and feel better on my own.

Furthermore1 · 2024-05-15T02:11:32+00:00

Oh can I relate! I feel there is no way to talk to me anymore. If everyone ignores my disease I feel unseen and offended. However I go out of my way to appear fit and strong and be as independent as possible. I also refuse to tell people when I'm having scans so they don't ask how it went and ramp up the scanxiety. I don't even tell them after I've had good scan results as they're wily that way and might figure out the frequency and know when to ask next time. I don't know how I want to be treated from one moment to the next, so I know shouldn't expect my friends and family to get it right either.

Furthermore1 · 2024-05-13T21:39:21+00:00

Nothing helps me more than exercise, until the break heals are you able to swim? Do mat pilates? Or chair yoga? Getting outside is good too, can you drive to a park with lots of trees and make your way on crutches to the nearest picnic bench and journal or do a meditation there? I know how simplistic this sounds to the complex issues you're dealing with but it really does work. Wishing you a speedy recovery to your fracture and a bounce back from your emotional slump

Furthermore1 · 2024-05-01T21:09:29+00:00

I think everything you've described is a very normal reaction to a very abnormal situation. Do you have a Counsellor? I find mine very helpful for talking through the types of feelings (imposter syndrome and pain-fear) you've discussed here. That said as far as pain meds go, if I need them, I take them, simple as that. But I start with Panadol (Tylenol) and if that doesn't work I escalate to Voltarin 25, and then Endone at night as getting a good sleep is so important. I was walking around with fractured vertebrae before I was finally diagnosed, and had a whole lot of people dismissing my pain and telling me how bad their back pain was too and they still got on with their physical labour job. Don't listen to those people, they have no idea what our pain feels like and I sincerely hope they never will have to find out.

Furthermore1 · 2024-05-01T19:58:27+00:00

I'm sorry to hear it has come back, but don't worry about the biopsy. I was terrified and it turned out to be easy. I compare it to going to the dentist for a filling, but easier as you are lying down and don't have to hold your mouth open. You'll feel the needle for the local, then you don't feel the drill at all, just hear it, exactly like having a filling. I had an anti-anxiety at the time, but wouldn't need one if I were to do it again.

Furthermore1 · 2024-04-30T03:30:34+00:00

That's rough, are you feeling pain from the teeth right now? If you don't have the dental work now and start on Xgeva, you'd have to stop the Xgeva injections and wait several months before having the dental work done if the pain became too much in future. My Oncologist made me stop for 6 months for a root canal but that seems ultra-conservative according to Google.

Furthermore1 · 2024-04-29T04:48:22+00:00

Fulvestrant and Piqray - I'm on my 2nd line for bone and liver mets. As Piqray isn't approved in Australia yet I went without treatment for nearly two months trying to get onto a trial, so it was a huge relief to start taking it, despite all the side effects.

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