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  • newnorm
    newnorm Member Posts: 54
    edited February 2018

    The Beacon it is! Yeah. Great news. Thanks for sharing. Xxx

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited February 2018

    That's great !!!

  • Katiejane777
    Katiejane777 Member Posts: 28
    edited February 2018

    Yah! I’m so glad to hear the name isn’t changing

  • chrissyb
    chrissyb Member Posts: 11,438
    edited February 2018

    Hi Katiejane777, welcome to the Aussie thread!

    Feeling a little better and getting used to not having to look before I move my feet. I will miss her for awhile I'm sure but the days go on and so do I.

    My weeks are beginning to get back to usual routine after the holiday break and I have my first day back at the station tomorrow. I'm not expecting to be run off my feet but I am hoping to get a few people through. For those who don't know me, I volunteer at the Burra Railway Station historic building once a week as well as being on the committee. We are all really excited as tge SA Government has gifted us $100,000 towards the restoration of the 1917 Dinning Carriage that we acquired last year and to help with the cost of replacing the canopy over the rails which was demolished back in the 1930's. The majority of the work will be done by volunteers which will help to make the money stretch. We are hoping to have all this done by August 2020 as that is the date that the rail came to Burra 150 years ago.

    Here ceases the history lesson......lol.😁 If you would like to know more about our Australian Heritage listed town I'd be happy to tell you or you could do a Google search.

    Am seeing my GP again on Monday as I'm still chasing the cause of my discomfort......sigh.

    Hoping you are all doing well.

    Oh, can you all let me know your views on sharing and wether you want me to book accommodation for you for the Get Together.

    I will be attending but I will have to leave for a few hours on the Saturday as my sister has announced that she is getting married that same weekend and she would like me to be her photographer........why do all good things come at once?.......lol.😁

    Love n hugs all. Chrissy

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited February 2018

    Yay Traveltext! Good news - and they listened Happy

  • Katiejane777
    Katiejane777 Member Posts: 28
    edited February 2018

    Thanks Chrissy! It’s good to be here.

  • wildplaces
    wildplaces Member Posts: 544
    edited February 2018

    Thank you Chrissy - I don't know sooo not nearly enough about South Australia.

    Sounds like a wonderful project!!

    😊🌷🐣

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited February 2018

    Katiejane ..Welcome ..

    Chrissy..gosh ...you'll be very busy with your sister's wedding as well !!! 😃


  • traveltext
    traveltext Member Posts: 1,055
    edited February 2018

    Artwork by Annie Dennison @barbieslosingit on Twitter. Co-founder #BreastCancerRealityCheck


    image

  • chrissyb
    chrissyb Member Posts: 11,438
    edited February 2018

    Love it Traveltext!

  • newnorm
    newnorm Member Posts: 54
    edited February 2018

    That’s great Traveltext. Awesome!

  • wildplaces
    wildplaces Member Posts: 544
    edited February 2018

    You are/ may beall familiar with this

    https://cancerforum.org.au/forum/2016/november/imm...


    There are a number of treatment articles av on Cancer Forum - some better then others.

    I picked the one above because it appears that we knew as early as 1922 the breast cancers had lymphocytes inside the tumour mass - and it is just recently that we think that might important...🙃

    Seriously though, great to see it take some momentum.

    Wishing everyone a good week!

  • traveltext
    traveltext Member Posts: 1,055
    edited February 2018

    Thanks for posting this here Wildplaces. I've been following bc immunology research and practice for a while now and have come to the conclusion that the results are not matching the expectations. The conclusion of this article perhaps explains why early optimism has been tempered by the variety of results achieved to date:

    "However it has become clear that checkpoint blockade as monotherapy will be insufficient in many patients with advanced breast cancer. To combat this, research efforts are now focusing on the key determinants of immunogenicity, and the factors that contribute towards immune-escape. If these are fully understood, a personalised approach to combination immunotherapy may have great potential to enhance breast cancer outcomes in the right patients."


  • wildplaces
    wildplaces Member Posts: 544
    edited February 2018

    and because I find history fascinating

    https://www.mdanderson.org/publications/conquest/f...

    This is a leisurely read about Paget seed and soil hypothesis - fist published in 1889 - Lancet - brilliant, just bloody brilliant article.

    The long and short of it - metastasis are as dependent on the SEED as they are on the SOIL.

    This being the MD Anderson article.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC30750...

    Why does it matter?

    Because without a doubt staying focused on well being, taking time and care, being supported and nourished, avoiding unnecessary stress affects the soil. This is something to aim for independent of Stage.

    It's why I treasure Chrissy's "I found my peace and that gave me strength"

    ( watched Darren Cahill ( tennis coach to many Hewitt and Agassi being notable) in an interview about his coaching style " greatness is not something that just happens, it is achieved by doing the little things and doing them well EVERY SINGLE DAY)


    😊🌷🐣


  • aussie12
    aussie12 Member Posts: 421
    edited February 2018

    Hi all

    I had my colonoscopy yesterday, I had a huge migraine as I hadn't eaten then didn't get it done until 5pm, had to be at the hospital at 1.30pm. I had to have 2 enamas as I couldn't drink all that horrible liquid to clean me out as I was gagging all the time. Then I threw up and finally got home about 8pm and threw up again.

    I woke up with a headache again this morning but it finally cleared and I've been eating again. The good news is that they didn't find any cancer or polyps in the bowel. I'm going back to the Oncologist on Monday as they want the results from the colonoscopy. I'm still getting pain on my left side so will ask what that might be.

    I haven't booked my trip to Adelaide yet but will soon.

    Carol

  • chrissyb
    chrissyb Member Posts: 11,438
    edited February 2018

    Wow Carol, you sure had a bit of a roughy but the end result is great news! Hopefully that pain in your side gets a explanation.

    I am assuming that you're ok for sharing? I know Aly, Trish and I are up for it.......anyone else? I have to really get stuck in and make our booking so need answers asap please.

    Have finally found out what has been causing my sight disturbance.........yes, I have cataracts but also (because of the fact that I'm an old fart) the eye gel is shrinking, but, instead of shrinking nicely mine has decided to stay attached at one point near the optic nerve. So when I go from looking down to looking straight ahead it pulls......ta da!!.... sight disturbance........sigh, just another thing to add to the list. 😊

    Hope everyone is doibg just fine.

    Love n hugs. Chrissy


  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited February 2018

    Carol - it's great news that your colonoscopy was clear, but not so great that you got a migraine, and were throwing up. I have the same problem (not the migraine) but the prep makes me throw up. I'm not sure what we are going to do when the next one is due!

    Chrissy - it's good to know what's causing your sight disturbance. That would have been so scary for you, not knowing. I've had cataracts removed on both eyes (so has Bob) so can tell you that part is a piece of cake :-)

    Now - as to Adelaide. I'm not sure I'll get there. Bob has to have a hip replacement ... sigh ... I knew he'd need one at least two years ago, but being stubborn, he didn't want to have it done "too early" as a hip replacement only lasts 20 years! Lol - I think he's intending to live to 100! So - he finally went to the dr (he's in a lot of pain now) and has an appointment with a specialist in March. I have a feeling this is going to leave us out of pocket at least a couple of grand (if we are lucky) and it could be even more. I can't make a commitment to Adelaide now until I know when his op will be and how much it's going to cost. If it's later in March or early April - I won't be able to leave him on his own.

    Sorry girls, I won't know the answer to Adelaide until 20 March ... Scared

    Trish

    xoxo

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited February 2018

    Carol..great news about the colonoscopy results ..ugh ..I know what you mean about that awful liquid ..I always end up by vomitting too :-(

    Chrissy..glad they got to the source of your problem .I'm not enjoying being an old fart much !!!

    Trish ..I hope Hubby's hip replacement goes well for him ..!

  • aussie12
    aussie12 Member Posts: 421
    edited February 2018

    Chrissy I don't mind sharing at all.

    Trish I hope you can come to Adelaide.

    I still haven't booked yet but will do soon.

    Carol

  • aussie12
    aussie12 Member Posts: 421
    edited March 2018

    i will probably book my holiday tomorrow night. I will be leaving on Wednesday 11th April and spending Thursday maybe going to the zoo etc. Will be going to bundaberg after to see my brother. Please let me know tomorrow if there is a change of plans.

    Thanks

    Carol

  • chrissyb
    chrissyb Member Posts: 11,438
    edited March 2018

    Hey Carol! No change of plans so go ahead and book. Can't wait to see you!

    Love n hugs. Chrissy

  • aussie12
    aussie12 Member Posts: 421
    edited March 2018

    Hi all

    For those not on Facebook I've booked my holiday to Adelaide, can't wait just under a month to go.

    So I've had my CT and colonoscopy and both have come back clear, for the new members I have stage 4 bowel cancer and had breast cancer in 2012. I am still getting pain in my abdomen so went to my GP and have a referral back to my Surgeon, luckily I go on Monday, very quick for an appointment. I might have scar tissue but not sure if it would cause so much pain as I've been having pain since January.

    I also the past few weeks have had pain in my left thigh which a few times after getting up haven't been able to walk for about 10 minutes. I had an x-ray but only mild degenerative changes to both hips. I am getting a referral to another Doctor to sort that out as very painful at times. I have arthritis in my fingers and the last few weeks they have been quite painful as well !!

    Will be glad to get it all sorted out.

    Carol

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited March 2018

    Hi Carol - good that you are going back to your surgeon on Monday - hopefully you'll find an answer to your abdomen pain. 

    I assume you are on an AI for the ER+ part of your bc? That can cause arthritic pain in your joints. Sometimes mild arthritis can cause a lot of pain, and sometimes severe arthritis has almost no pain. Change of season will often make my joints ache more.

    Well I'm happy to report that I don't have any bleeding internally! I've had a few problems recently - mainly that I've been really, really tired. My GP ordered blood tests, and for some reason my iron levels dropped to critical levels, and so I had to do the "poo" test for three days to see if there was any blood in there. There wasn't - which was a relief! So I'm on iron tablets for a month to get my levels back up. I've also got a referral to see a Rheumatologist. My GP thinks I have some sort of autoimmune problem, and the specialist will hopefully get to the bottom of it. I'm on a short course of steroids at the moment, to see if it helps with my pain, and it's been great for the pain, but not so great in other ways - we've probably all been on steroids at some point, so you'll sympathise. I HATE steroids. At least I'm not bouncing off the walls. Remember how I was during chemo Chrissy? Well at the moment I'm sleeping like a baby, so that's great, but I have a constant low grade headache.

    Anyway - when I see the specialist - first available appointment is the end of May (!) - I'm hoping he can work out what's wrong. 

    Hope you are all well.
    Trish

    xoxo

  • Delvzy
    Delvzy Member Posts: 454
    edited March 2018

    happy dance girls all scans clear CT and bone show no progression and all organs clear. This is me (left) at the Ed Sheran concert in Melb on weekend

  • chrissyb
    chrissyb Member Posts: 11,438
    edited March 2018

    Hi girls!!  Well the booking is made, we are staying at the Mantra Hindmarsh Square which is a very short walk to Rundle Mall and a good selection of café and restaurants.  Also not far from the tram as well. I have booked a 2 bedroom suite which has a queen bed in one room and twin beds in the other a well as a sitting area and small kitchen.  I'm happy to share the queen but if there is no one comfortable with that we can get a roll away bed added at $40 p/n.  Total cost for the suite is $576 so divided by four that is $144 ea total or $154 with roll away.  The full address is 55-67 Hindmarsh Square, Adelaide for those who want to book their own room.(they also have single rooms but I forgot to check price for you).  Getting close now that's for sure and I can't wait!

    Carol, I sure hope it's just arthritis and nothing more as you have had quite enough.  Arthritis can be ever so painful and if your hands are acting up it's very possible that you have it elsewhere and that is where your pain is coming from.  Anyway, keeping my fingers crossed for you.

    Trish, dang girl!  What else can this disease do to you?  Autoimmune problems can crop up after chemo and seeing as you have done it full on twice, a problem there would not surprise me.  Bit of a bugger having to be back on steroids.......yeah, I remember how you were so I pretty stoked that you are at lest sleeping well at the moment. How's Bob doing?  Any news on his hip replacement?  Hoping you can get to the bottom of it all soon.

    Delvzy, Yay!!!!  You go girl!!!  Fantastic news!!  Great pic of you and Lucky you getting to see Ed Sherran....wow!

    Let me know if anyone needs a pickup from the airport as I will have my car with me.

    Love n hugs all!  Chrissy

  • aussie12
    aussie12 Member Posts: 421
    edited March 2018

    Hi all

    I saw the surgeon today and I'm getting a ultra sound in a few weeks, he said it might be a hernia although he couldn't feel one or maybe scar tissue.

    Before I leave for my holiday I am having a ultrasound, seeing a specialist about my arthritis and having my port flushed. I will be glad to have a break.

    Carol

  • chrissyb
    chrissyb Member Posts: 11,438
    edited March 2018

    I am looking forward to seeing you again, Carol. Keeping everything crossed that it is scar tissue.

    Love n hugs. Chrissy

  • kyliet
    kyliet Member Posts: 587
    edited March 2018

    Hi everyone! I have been reading to catch up, some really interesting info from Wildplaces and Traveltext.

    Great news Delvzy.

    Hugs to everyone.

    I wish I could make Adelaide, hopefully sometime.

    It is that time again, I am having scans this week and next week. But I am doing a Body painting course in between, so that should be fun :)

    Kylie xx



  • Delvzy
    Delvzy Member Posts: 454
    edited March 2018

    let's hope for scar tissue Carol. I wish I could have made the reuinion maybe Melb next time?

  • chrissyb
    chrissyb Member Posts: 11,438
    edited March 2018

    Or maybe even Ballarat?

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