Here we (I) go

13

Comments

  • cactusk
    cactusk Member Posts: 72
    They look amazing @arpie
    Kayak sounds fun too
    Hope you and yours have a great ukulele singalong.
    x
  • cactusk
    cactusk Member Posts: 72
    UPDATE: Oncotype test is back - am going to see the Medical Oncologist on Thursday. Only 2 more sleeps.
    Now i'm stressing thinking she would call me if it were OK - but given I have to go in, perhaps that means it has come back with a result that means chemo?
    I realise that I don't know until I know, and that only 2 more days is much better than 6 days (or longer) but still. 
    Breathing, will go for a walk this afternoon.
    Utilising all the anxiety tools in my repertoire for this one.
    K
  • arpie
    arpie Member Posts: 8,164
    @cactusk ..... all the best for your Med Onc appointment on Thurs xx.  They'll take you thru all the options and explain it fully.

    Try not worry yourself leading up to it xx  I think they really only do phone calls or telehealth consults if there is a Covid issue or similar ....  

    Have you listened to the Charlotte Tottman Podcasts on What you don't know until you Do?  They are terrific - she is a BC psychologist who was diagnosed a few years ago & had a double mastectomy, no reconstruction.  
    The podcasts cover pretty well every emotion that most of us have gone thru since Day 1 of diagnosis. (There are 2 series)
    https://www.bcna.org.au/resource-hub/podcasts/season-1-episode-1-d-day-diagnosis-shock/

    You can read a bit more about her here too .... (click on the PDF document below - an interview with The Herald.)

    take care
  • cactusk
    cactusk Member Posts: 72
    Thanks @arpie
    I actually listened to her podcast about anxiety last night. I really like how she gave the informed 'psychologist' perspective, but then gave examples of how she personally handled issues from her own experience.
    I also respected that she was (seemingly) very honest and did not dumb down any of the the feelings or understandings.
    I'll take a listen to that one too.
    Appreciate - truly - the support from this network.
    Kelly
  • Pommy8
    Pommy8 Member Posts: 135
    Good luck with results x
  • cactusk
    cactusk Member Posts: 72
    Thanks @Pommy8
    I must admit, the anxiety yesterday and last night was rather acute. Dug deep into my 'toolbox'.
    Cleaned the fridge, had a warm shower, even played a game on my phone (which I had to download as I don't have any!) to keep my mind off things.
    I'm prepared - mentally - as much as I can be, I think. Or maybe I'm telling myself that so that I don't let fear of what's to come overcome me.
    I know from reading many posts on here that a lot of people have done this before, come through it, are doing great. I need to remind myself of that - constantly.
    It's the absolute powerlessness right now for me to have any impact on the outcome that i'm struggling with, that loss of control. 
    Harumph.
    I'll update my thread after the appointment today.
    (another date to add to the brain: 31 October, found weird dimple on boob, 22 November diagnosed withe breast cancer, 30 November surgery, 4 January - next phase of treatment will be ...)
  • cactusk
    cactusk Member Posts: 72
    GREAT NEWS!
    Oncotype came back with a very low recurrence score (10) so no benefit from chemotherapy.
    I'll be seeing my radio oncologist next week to get ready for radio, then when that's done, back to the med onc for aromatase inhibitors, an injection to ensure menopause (some kind of something to support bones (bisphosphonate), and a new medication that's currently not available on PBS (Natalee trial / results?).
    I felt like I'd been hit by a truck - the relief felt like such a massive load had been lifted. 
    I am so incredibly grateful and lucky I was able to get the test, I am very aware that this is not right nor possible for everyone. I'm incredibly lucky that my genes went that way too - I realise that this isn't the case again.
    So very very relieved.
    Kelly xxx
  • arpie
    arpie Member Posts: 8,164
    Woohoo!!  Great news @cactus xx.    Does that mean you'll be on the trial?

    take care xx
  • cactusk
    cactusk Member Posts: 72
    @arpie I think it's more that there a scheme where I'll be able to apply to get access to the medication before it's on the PBS, more an early access scheme.  Just the timing is incredibly perfect!
  • Pommy8
    Pommy8 Member Posts: 135
    Fantastic news a huge relief I know .
    Good luck next step.
  • cactusk
    cactusk Member Posts: 72
    Next consultation with radio oncologist tomorrow - hopefully then we'll have a plan for treatment.
    I think the reality of the waiting for the result about chemo has finally hit me.
    I felt so buoyed on Saturday, did some chores and had an early dinner with friends. Yesterday - I crashed. Absolutely exhausted. Felt like i'd been hit by a truck. The past 8 weeks have been so full on - from diagnosis to surgery to treatment options - i think the reality of what's happened and what is still happening has finally started to sink in. I'm trying to be kind to myself and take good care of me before radio starts, but i already feel so fatigued. Perhaps it's a combination of everything and my body telling me to take it easy, there's still (quite) a way to go. 
    Gosh...
  • arpie
    arpie Member Posts: 8,164
    Take care @cactusk ... it really is like a treadmill at the beginning. 

    Try and take each day as it comes & just "stay in the 'present' " .... try not to get ahead of yourself with the 'what ifs' as they may not even happen xx

    All the best for tomorrow's appointment xx
  • Abbydog
    Abbydog Member Posts: 512
    Dear cactusk,
    You've had great news, not needing Chemo.
    That should be a great relief. Although there is still a great rollercoaster of emotions.
    Radiotherapy was the easiest of my therapies, but everyone is different.
    I was lucky to not be fatigued and I did not burn.
    Ask where you are going for R/T if they use Mepitel to cover the R/T site.
    My hospital provided it. It saved trying to find a miracle cream to apply.
    When Mepitel is applied, it is on 24/7 and until it falls off 1-2 weeks after R/T
    Also make sure you find out what cost is involved in your R/T
    It is generally not covered by Private Health insurance.
    I was told I could be out of pocket after Medicare,  $2,000-$3,000 if done privately.
    My Private Onc referred me to the Public system and it cost nothing. Treatment was very good.
    Sometimes I have heard that the Private R/T, can sometimes be negotiated to a lesser fee.
    Wishing you all the best with your R/T experience.

  • cactusk
    cactusk Member Posts: 72
    Thanks @Abbydog
    I'll be doing rads publicly - thankfully - as going private for my diagnosis and surgery has been expensive, but I"m incredibly grateful and lucky to be able to have gone that way, with surgery happening so quickly. I have chronic anxiety so the waiting is the worst for me.
    My rad onc has suggested Strata XRT instead of Mepitel. It's a gel that apparently does the same thing but is easier to use (applied twice a day).
    I also have a consult next week at the Menopause Clinic at RNS hospital. I'm keen to see what they can offer in terms of side effects once I'm on Zoladex and the other combination of endocrine therapy. 
    My measure up / CT is Thursday, then rads will begin a couple of weeks after that.
    More waiting, but this time i'm hoping it will be easier to handle as I know what's at the end of it.
    Appreciate your comment - thanks Abbydog,
    Kelly
  • cactusk
    cactusk Member Posts: 72
    OK. Radiation treatment will begin on Monday 29th January.
    DIBH - deep inspiration breath hold, and no tattoos!
    The team are SO lovely - everyone i've met at all 3 hospitals i've been to so far have been incredibly kind and understanding and patient. It really does make a difference to how I feel.
    Maria, the receptionist at the rad onc building at RPA this morning reminded me again 'take it a day at a time Kelly'.
    I think of it now as more of a pinball machine than a roller coaster. Some times on a roller coaster you squeal with glee and excitement, whereas on a pinball machine there are rounds of crazy activity, then moments of pause, where you just have to wait and be still, before the next craziness begins. I'm trying to learn to live with my pinball machine, not like it, but accept that it's here for some time.