Member: wendy55 | BCNA Online Network

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Re: Is anyone on a home care package & NOT in the Carer's Group? MORE Changes being made ....
Hi @arpie, many thanks for this, my partner is my carer and we are both on a level 1 home care package, but with my disease progressing this could change so thanks for the heads up. wendy55
3 years ago Place Caring for someone with breast cancer
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Re: Just feel like running away
hi @Molly71, just thought i would jump in to say that everything the lovely ladies have posted is so absolutely true,i cant really add much more as its all been covered, just wanted to let you know that you are not alone,I beleive in the saying "this too will pass" and it does, one day at a time, one foot in front of the other, or if you want watching your favouite tv show/movie and a box of chocolates always helps I find, take care, be gentle on yourself, you are the one that matters, wendy55
3 years ago Place Living with breast cancer
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Re: Wise words ....
Hi @arpie, as usual you always seem to find and post something, just when I need it, wendy55
3 years ago Place Managing stress and anxiety
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Re: Chemo drug CYCLOPHOSPHAMINE and bladder cancer
hi @Flaneuse, so very sorry to hear of whats happened to you,but pleased the pain has gone away, I am very interested in all of this as I am on cyclophosphamide, I know the next couple of weeks will be hard and frustrating for you,but let everyone look after you,be gentle on your self, take care, wendy55
3 years ago Place General
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Re: Stage 1 hormone sensitive to Stage IV
hi @Ekay,I know that your head is spinning right now, all of the above information is spot on and at this time I wont add anything further,you have enough to get your head around,like you I am stage 4, which means that although the disease is incurable it is manageable and I should know I am 10 years and still going strong,they talk about this now as being like a chronic disease, yes there will be challenges, but you can do this, we are all here for you and your lovely family, it really is a case of one day at a time and breathe,it really does help, take all the support you are offered, now is not the time to say no, I can manage,please keep in contact, take care, wendy55
3 years ago Place Metastatic breast cancer
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Re: AC and PAX experiences?
hi @Cat2, I am on my 4th line of treatment with IV chemo,I have a port,for me, the best thing ever, however as it was too late for surgery of any kind, i am still "intact,its a personal choice, have you spoken to your oncologist about it or a mcgrath breast care nurse,the oncology nurses love a port, its so easy to access, so clean, and depending or not if your chemo drugs have to be refrigerated prior to infusion, they are bloody cold when they go into your vein a reral shock, they had run out of the special needles to access my port one day and had to go into my hand and poke around for a vein, they forgot to tell me the drugs ha been regrigerated and boy did i know about it, with a port you feel nothing at all,but as i am on going treatment for the rest of my life i am a bit different to you, all the other ladies have given the best info, most chemo suites have overherad tvs, but quite frankly i couldnt be bothered,the pre medicatiion they give you for anti nausea often makes you sleepy anyway and i am quite happy to put my legs up have a warm blanket given to me by the nurses and close my eyes while it all happens, its quite boring just sitting there, i think the first time at the hospital you may be there for a good couple of hours, the nurses will explain everything to you, then at some point a pharmacist will come and have a chat to you as well, so a lot of listening involved, a notebook or recording it on your phone, they should give you handouts outlining everything about the chemo and its possible side effects as well and you will probably go home with some anti nausea medication as well,good luck, we are all different and react differently, i did lose my hair, in fact its now the third time for me, on the chemo i am on now, it usually starts around day 14 to day 17 sometimes good to go and have a shorter hair cut first to get used to it,its all very daunting i know but you will get there. take care listen to your body it will tell you when it needs to rest. wendy55
3 years ago Place Side effects
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Re: Accessing super while still working
Hi @danstew, you have reached the preservation i believe which is 55,however its up to your super fund whatever their rules and regulations may be and it also depends on how much the tpd payment is would it be worthwhile for you to access this and would it be financially viable option, i rang the cancer council and was put through to someone who then put me in contact with a financial advisor, this was a free service, depending on your assests, he gave me the advice that i needed in my situation, so i guess next step go through your super papertwork, then ring the super company and expalin, see what they say, it may not be a easy process and may take some time, if there is a reasonable amount of money to be had, it may be worth your while that either the councer council could put you in contact with a solicitor who works pro bono for them or if you have a family solicitor they may do the paperwork for you, all depends how much is on offer versus the costs of a solicitor either your own or the cancer council, i am 67 and on the pension so a bit different to you,but my tpd componenet certainly came in handy, also ask the question do you have trauma insurance on your super, so that in the event of a diagnosis like stage 4 you may have a claim there as well, i can totally understand your reasons for doing this, just to let you know i am stage 4 have been for 10 years and i am still here!!!, just quickly i dont know if you are in the city or are rural i am rural and requested with the cancer council for a phone call with the financial advisor as it would take too much out of me to travel to adelaide for a sit down interview when it could all be done via the phone, just a thought, good luck, wendy55
3 years ago Place Living with metastatic breast cancer
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Re: Things that Francis R. Croken wished he'd been told when diagnosed ...
dear dear@arpie, thankyou, every word that it is written is exactly how i would describe living with stage 4 de novo metastatic breast cancer,nearly at my 10 year anniversary and still counting,my pyschologist has suggested that I too write a book based on my "travels" especially as I also had stage 1 ovarian cancer at 29, and only because I advocated for my own body and pushed the doctors did I get treated,had surgery and now here I am with met.breast cancer,diagnosed at 57, and I was told that it was just bad luck that this has happened!!!! and there was no connection with the ovarian to the breast cancer?, I am going to print the advice off and pass on to my pyschologist. wendy55 xxx
3 years ago Place Living with breast cancer
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Re: fatigue will it ever end
hi @ KGEB, i am currently on this regime, just had my 2nd cycle but i also have mets and this is now my 10th line of treatment,and like you have hashimotoi, although since my diagnosis my endocrinologist has kept a eye on my levels and every time i start a new treatment i have my levels tested as he explained to me, he just did not know what these drugs would do to me, i am currently on thyroxine and tertroxin, so perhaps a thyroid function test would be an option. The fatigue is bad and i really do understand what you are saying, i also have the eye problem as well,this is something i have learned to live with over the years,do mention these effects to your oncologist as we are all different and react to these drugs each in our own way,if you have just had your last treatment, please do be kind to yourself, your body and mind have been through an awful lot lately and now needs time to adjust,if you need to rest, rest,if you need to go to bed, go to bed, its okay!!!, allow family and friends to help out, you are not superwomen,do what feels right for you, allow your body to do its job.Its a hard path that we all tread on this breast cancer "journey" and we all do it in our own way, please get your thyroid levels checked as you may need an increase or decrease in your medication. take care, wendy55
3 years ago Place Side effects
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Re: 5 years today since my surgery ....
Dear @arpie,yes, yes, yes, to all of the above, wendy55
3 years ago Place Living with breast cancer
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Living with metastatic breast cancer
This is group for people living with metastatic breast cancer (also called stage 4, secondary or advanced breast cancer). This is a safe, understanding space to connect with others who truly get what it’s like to hear the words that you are living with metastatic breast cancer. Together, we offer each other strength, compassion, hope encouragement and a place to talk openly—whatever you're facing.
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.

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wendy55

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Living with metastatic breast cancer

Connecting rural, regional & remote areas

Let's talk: vaginas, menopause & me