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'Getting on with life' tips

Mez_BCNA
Mez_BCNA Administrator, Staff, Member, Moderator Posts: 1,095 ✭
in Metastatic breast cancer
Moderator moved @Batjam to the main discussion section of forum:
Hi all - I’m new to this group. I’m 52 diagnosed St4 Breast Cancer after ending up with a fracture in my hip in Dec 2022. I’ve joint to connect with others - get any ‘getting on with life’ tips etc. Say hi if you are in a similar situation and feel like chatting 

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Comments

  • June1952
    June1952 Member Posts: 1,935 ✭
    Hello @Batjam and welcome to the site.  Perhaps if you'd like to tell us a little about yourself and others will join the conversation.
    Have you joined the private metastatic cancer group on here ?  You can chat more privately in that group and the ladies know just what you are going through.
    Getting on with life is just that, we all have to put one foot in front of the other and try to go along as if we'd never had the diagnosis.  We all do the best we can.
    I am in Victoria so am absolutely hating the very cold windy weather which is stopping me from going for walks.  The cold is OK, just the winds make it incredibly difficult and I end up with more pain.
    If you are an animal lover like me you will find a post on what pets we have so that may be of interest to you.
    If you look at the groups (see list in the top blue banner) you may find one you'd like to join.
    There is a post relating to all the clever 'crafty' ladies so that may be of interest.
    Keep in touch and ask if you need assistance navigating this site.  ❤️❤️
  • arpie
    arpie Member Posts: 8,056 ✭
    Hi @Batjam - welcome to the forum!!   I hope you've recovered well from your hip fracture xx 

    Where abouts are you? You can add your 'town/city/area' on your profile - and other members may also be able to point you to specific services that may be available to you.   If you live in a rural/regional town, you can also access some fuel & accommodation rebates thru your local state's Patient Travel scheme ..... as we don't have the luxury of just being around the corner from treatments, as most city dwellers do.

    As June says ... let us know a bit more of your story 'so far' .... which BC you've been diagnosed with and treatments you're having .... It is all such a shock & rocks your life bigtime.  I hope you have supportive family & friends surrounding you xx

    Feel free to check out this thread for other areas of interest on the forum that are 'off topic' - including showing off your pets, your garden, art & craft .... and there are also some tick sheets (down the bottom) that you can use to 'self assess' how you are going, physically & mentally xx. We even have some 'funny' threads, as we all need a laugh!!
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

    Re 'getting on with life' ..... I find that keeping busy is one of the best things ..... and if you are up to it, get out & about as often as you can - even just a walk in the sun every day, going to a movie with a buddy, or a coffee catchup with family & friends .... 

    Have you been able to get back into your old 'hobbies & passions'?  Maybe even consider trying something new as well?    I run a ukulele group & it is terrific fun, plus we 'give back' to others, by doing regular Gigs at Nursing Homes etc .... all good fun!  

    Take care xx
  • arpie
    arpie Member Posts: 8,056 ✭
    edited June 28
    OMG @Batjam..... early morning dragon boating in WINTER? ..... it is cold enough HERE let alone up in the Mountains!!!   I kayak fish & the wind is definitely a 'no no' .... bitterly nasty cold & dangerous .....

    Have you had to travel much for your appointments/treatments?  IPTAAS (Isolated Patients Travel and Accommodation Assistance Scheme) will reimburse a lot of your fuel costs, and also contriute to any accommodation costs .... you have 12 months to put the 'bills in' for reimbursement.   (We have a private group where we update any info as it occurs ....).
    Your GP fills in the first form (to your out of town specialist) and you fill in the 'diary dates' & get the specialist to initial those ones .... and send them in for processing.
    https://onlinenetwork.bcna.org.au/group/28-living-in-regional-rural-and-remote-areas

    Get the forms here:
    https://www.iptaas.health.nsw.gov.au/

    Wow! You would have had to be incredibly organised to run all those theatre groups!!  Well done YOU.

    Feel free to check out 'Creative Corner' - we have many who crochet/knit & may be able to help with patterns & tips ..... @cranky_granny, @Annie C, @iserbrown, @AllyJay
    https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest

    Great that your treatment is keeping you stable, even with some side effects .... yes, it sure beats the alternative!  

    Take care & all the best xx

  • jennyss
    jennyss Member Posts: 2,067 ✭
    Dear @Batjam,

    from jennyss in Western NSW
  • Cath62
    Cath62 Member Posts: 1,444 ✭
    Hi @Batjam, fellow mets girl here. I have early breast cancer in 2020 and mets diagnosed in 2023 with spinal fracture. Mets to bones and liver. My current treatment is Fulvestrant injections monthly, ribociclib and xgeva every 3 months. Side effects are tolerable atm for me. I have joined the mets private group and that is also good to join but I do post here as well. 

    I am a early morning walker. I hate cold but rug up. I live in Brisbane so most days the sun shines and I love that in winter.  Fatigue is the hard one but I balance my days with a nap here and there. 

    Do you have good support? My hubby is amazing and I have a son who has a little boy and a little girl due next month. They are my world. I have aging parents (88 and 90). I use to do alot more for them but not as much now.

    I do yoga weekly and enjoy a few other alternative treatments too. I love a nice lunch out with friends and escaping in our camper. I am crocheting at blanket but have not got too far with it. 

    Great photo of you. 
  • cranky_granny
    cranky_granny Member Posts: 851 ✭
    Hi @Batjam welcome to this fabulous support group.  i live down the hill in Penrith. Where abouts  are you having your treatment. I go through the nepean cancer care centre for just about everything. 
    I have been relatively stable with my mets since 2019 had the odd scare but Oncology keeps an eye on things.
    I am part of the living with mets group on here. they are a wealth of information re mets treatments
    I don’t post here as  much as others but i check in regularly. Im 67 and work part time a Desk jockey so not hard work physically. I keep going because its keeping my brain alive. Though I keep telling my boss she needs to replace me I cant keep going forever. I don’t think she believes me.  
    I do try to do my crafting. All for charity. Crochet T towels. I have a heap of bowl cosies cut out ready to sew also some oven mitts and I do hanging hand towels to match. Way back in the crafts section is some pics of some. Friends keep trying to get me to join their craft group and cwa but until i stop working no time  between work and home chores and nana duties theres not much time left.  
    Keeping occupied keeps my mind off things. 
  • Batjam
    Batjam Member Posts: 2 ✭
    I’m at Genesis Care just down the road in the Somerset centre. Down there once a month now for my jabs. Had port taken out as it wasn’t flushing well so eliminated that hassle. I’m working as a public servant so work mostly from home now - the upside of covid. Head into town one day a week. I will join the other group for sure.  I’m getting better at juggling time between health, life and work - dropped work hours has helped. Definitely helps to still use my brain (albeit foggier thanks treatment) and stay creative- all good therapy. Just started with exercise physiologist get some strength back. I call myself my work in progress 😂
  • cranky_granny
    cranky_granny Member Posts: 851 ✭
    @Batjam the Genesis centre was out of my reach financially. I have heard its a great place. I have no complaints about the cancer clinic, they haven’t let me down. I’ve been going there since 2016. I got a great team there. My next appointment is the 19th, We are hoping to stretch out to every 8 weeks instead of 4, my meds are oral  Palbociclib  and Armidex so no jabs plus all the junk to counteract the side effects. hope to stay that way. My mets are still just hanging round in my bones so things are working. 
    I’ve not found a local support group in the area. Not that i have much free time to join in on much. 
    The cancer wellness centre have some great support services. As yet the various things are on when I’ m at work or grandkid caring. Though i keep my annual membership up. They are in Katoomba and Penrith. 

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