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  • oseikka
    oseikka Member Posts: 4
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    @lorns thinking of you, you are a super woman. Delegate as much as you can. I'm sure your daughter and your mum all they want is to have you there. It's the oxygen mask on the plane thing, focus on you right now and let others (who i'm sure will be grateful) to step up and organise things. Sending you hugs and positive vibes.
  • lorns
    lorns Member Posts: 14
    edited June 7
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    Seems about time for an update...
    My daughter's birthday party went off without a hitch and she had a wonderful time. Though my knitted knocker disappeared up towards my shoulder over the course of the party and no-one thought to tell me I was majorly lopsided :#
    Port-a-cath was installed and is now all healed up. It was much more painful than I expected from how the procedure was described. I'm getting used to having it there and negotiating hugs with kids whose heads are at that height.
    Enjoyed a weekend away with the family at the beach which was wonderful, cold but wonderful. Cabarita Beach (northern NSW) is just stunning and reminds me so much of my absolute favourite place, Point Lookout on North Stradbroke Island.
    I had my first chemo treatment last Tuesday. I'm on the AC-T protocol. I went in with low expectations, and hoping for the best. As the infusion finished, I suddenly felt exhausted. I had some nausea but was easily managed with the meds and finding foods that didn't set it off. Helped to not get hungry, hunger definitely is not good for nausea. I had horrible joint aches for the first couple of days. The first 3-4 days were the worst, the fatigue was pretty intense. I'm now at day 10 and feeling pretty good - gratefully so.
    I had to go into emergency twice to get things checked out - of course these things happened on the days that my GP doesn't work so couldn't see them. The first was after my face & neck turned bright red - and I mean beetroot, bright red. No clear answer for it, likely a reaction to something - either meds or my skin deciding it suddenly didn't like something I was putting on it. The second, I woke up with a very sore ear and throat, spent all day in emergency waiting for bloods & swabs. Again, no idea what it was but sent home this time with antibiotics for just in case.
    The emergency visits were a real head-f*k for me. I've always been the sort of person who brushes things off, works through sickness - I have a real intolerance for being sick :D (ironic, right?) and having to get every little thing just makes me feel like a big hypochondriac. I mean, there were people who were having real life & death emergencies while I was there, and I'm sitting there wasting people's time with a sore ear - it felt so dramatic. It's going to take some getting used to.
    In anticipation of the hair loss, I enjoyed a final trip to the hairdresser and got it cut short. Then dyed it hot pink for a bit of fun :) I've booked in for a Look Good, Feel Better workshop - which looks like a lot of fun (for anyone coming across this, here's the link - https://lgfb.org.au/).
    Anyway... that's where I'm at so far. Grateful for having a fairly mild time of it so far. It'll be good going into the next one with an idea of how I'm going to respond.


  • arpie
    arpie Member Posts: 7,801
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    I am so glad your daughter's birthday party went off so well.  hehe, I bet no-one noticed your knitted knocker going north!  ;) 

    Portacaths tend to be easier in the long run - did they give you a swab to rub on it before you got to the clinic, to deaden the pain when the needle goes in?  If not, ask about it xx  Drink plenty of water in the days following each infusion xx  Eat what you can, when you can - meal times don't 'count' any more. ;) 

    No, you are not a hypochondriac @lorns - you've been told to seek medical advice if things go 'wrong' ... so well done you.  You do need to be proactive from here on.  Well done on chopping your hair & doing the colour!!  That would be a surprise to family & friends!!  ;)   The look good, feel better workshops are terrific.  

    Check out this post to see if you might be interested in some lovely bright caps to wear (specially with winter kicking in now!)  Hubby used to sleep in his beanies when he lost his hair to chemo.  @LeighLeigh has them available xx
    https://onlinenetwork.bcna.org.au/discussion/26560/chemo-caps#latest

    take care & all the best for your ongoing treatments 
     
  • lorns
    lorns Member Posts: 14
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    Thanks @arpie - I was sure to put my husband on boob duty after that to let me know if it was travelling. I managed to get a silicon prosthetic a week or so after which doesn't head off in strange directions :D

    Thanks for the pointer, I haven't looked at caps to wear yet so this is helpful.

    I'm trying to hard to get over myself re the "chemo-chondria" (as I'm calling it). A nurse in emergency said "Welcome to cancer, it's a barrel of fun!" - made me smile :)
  • unicorn3
    unicorn3 Member Posts: 8
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    @lorns glad to hear you are doing well. I’ve read your story and many others but have never posted my own. Yours reminds me of mine so much and your age is similar, I’m 48 but my treatment is the opposite of yours.  I’ve already done the 6 months of ac/t chemo, t first which was much easier than ac, then surgery,  mastectomy (8 weeks ago) and 20 lymph node’s which all came back completely clear.  I had the port put in before chemo and now just waiting for 3 weeks of radiotherapy as mine too was in the middle of chest and neck area also. 
    I’m glad your daughters party went well I remember being right at the start of diagnosis at my daughters 7th birthday last year but had to pretend everything was normal as no one knew yet. 
    It’s tricky managing cuddles with the port and then the mastectomy, my daughter was always asking which side she could cuddle me on 😆. Thankfully now I can just about manage either side
    i found the ac chemo the hardest of all this so far, nausea and headaches and just general fatigue but I found I felt good just in the week before I was due to go back for another round.  Small meals often and salty foods seemed to help me, rest when you can which is easier said than done when you have kids 
    I hear you on the emergency/hospital stuff I was the same, never got sick, these surgeries were the first time in over 25 years I’d had surgery or even been in a hospital (apart from kids of course) 
    Best of luck with the rest of your treatment



  • unicorn3
    unicorn3 Member Posts: 8
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    For sure the kids do keep you grounded @lorns, my eldest son who is 15 has been so helpful and even telling me off for doing things I shouldn’t 😆.  They also keep me extremely busy which is good, no time to think about anything negative. 
    I used cold cap but it wasn’t successful so now I have less hair than my teenage sons but grateful I didn’t lose it all. 
  • Locksley
    Locksley Member Posts: 953
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    @lorns I'm so glad your kiddies party went well.  The knitted knockers are good for a short time. I would often be lopsided as they moved.  I would have 1 pop out while I was doing aqua aerobics with certain exercises until I got a proper aqua prothesis.   I was mortified but then just laughed it off as i was happy I could still join in and living my best life.

    I sometimes found a potato cake with salt was a craving after chemo.   I would have whatever I wanted, craved or could keep down.

    I love that your kids want to shave your husbands head.  Telling the kids what to expect helps everyone heal and support you.

    When I went to the hairdresser with my adult daughter when my hair started to fall out. The hairdresser showed my daughter how to shave my hair and it made something that was very traumatic for me such a beautiful thing.
  • lorns
    lorns Member Posts: 14
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    @Locksley yum, potato cake with salt!! You've now got me thinking of gems & gravy 🤤 Thanks for the giggle re aqua aerobics! 

    Last Friday my hair started coming out in clumps, and I was leaving pube confetti on the toilet (haha TMI, but it gave me the giggles for some reason). By Saturday afternoon I looked like a mangy dog, with weird bald patches on my head. Gave a nod to the husband and said "I think it's time". The kids both had a go with the clippers, much to their delight. My daughter gave me the haircut from Raya and the last Dragon. We shared a tear or five and now I've a full nude nut. 

    It's taking a little getting used to - have jumped at my reflection a couple of times! It feels amazing in the shower and I'm slowly figuring out head covers. I'm very grateful to my parents for giving me a well shaped noggin. The kids have forgotten about shaving my husband's head - which I'm secretly happy about as I prefer him with hair ☺️

    I went to a Look Good, Feel Better workshop which was wonderful. I can't recommend enough - the facilitators are lovely and it was so great to meet a lovely group of ladies. You get some skin care and make up goodies and get shown how to use them. They also gives tips on wigs and show you a few scarf ties. It was my first proper 'outing' with no hair and it was such a supportive place to be. 

    Had my 2nd AC the day after that, talk about going from a high to a blergh. Definitely finding it rougher on the second one, I now see how it accumulates 😭 At least I know what to expect now. And I'll be on my "good" week for the last week of school holidays - hoping to get some fun stuff in with the kids. 

  • Abbydog
    Abbydog Member Posts: 489
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    Dear Iorns,
    I'm new to your discussion.
    I'm sorry you are going through this.
    Has anyone suggested you look into claiming on Income Protection Insurance, if you have it.
    Many people have this included in their Superannuation.
    Sorry if this has already been covered.
    All the best with everything.

  • Locksley
    Locksley Member Posts: 953
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    @lorns I'm glad you could share the hair situation with your family.  That bald shower is amazing isn't it.

    Do rest up on the days you are not up to it.  Hope you get to share some special time in the school holidays with your kiddies.