Night Howls

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  • JJ70
    JJ70 Member Posts: 983
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    @kmakm I don't know how I got from distressed about not being able to find words like 'tongs' and 'bed' to finding it fucking hilarious! I just have. I guess when I went to visit high profile people like the Medical Director of BreastScreen WA and my local MP with the Can at 40. Do at 45 campaign, I had to be up front about my impairment.
    I remember sitting in Josh Wilson's office straining to find the word 'negligent', but instead used 'negligible'.
    This was hilarious, because I was trying to say that the government were negligent for not exposing compromising breast density information to women so the word negligible was of course opposite in meaning.
     I laughed my head off and said to him - 'I know that's the wrong word, but for the life of me, I can't think of the right one!' It was then that I explained CRCI (Cancer Related Cognitive Impairment). I think I have just come to accept it and still hope it will improve. Kids are going to have a field day come February when I start teaching again!
  • kezmusc
    kezmusc Member Posts: 1,544
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    Yep,  you do have to start laughing at it after a while.  Incredibly frustrating when you used to be able to hold a decent conversation and now you just have to sit back an listen somedays incase you say something stupid. Add in a glass of wine and I pretty much forget my own name sometimes. I have a penchant for getting words reversed or mixing two words together as well.
      It does improve somewhat. I started taking ginko and brahmi a number of months ago.  I am not sure whether it has made the difference or the breaks off my drugs, or just time that has helped. Probably a combination of all of them.  I also do a tonne of crossword puzzles.  Seems to be helping.  Some days I even sound normal LOL.  
  • SoldierCrab
    SoldierCrab Member Posts: 3,446
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    Survivorship is not an easy road at all  especially at the beginning of it as we are still effected by side effects to our brains emotions bodies etc. 
    But know that it will get better and I think we do learn patience through it.  Both PrimeK and myself often discuss the toughness of survivorship.  I try to focus on the positives of survivorship as the negatives can really get me down. 


  • kitkatb
    kitkatb Member Posts: 442
    edited November 2018
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    God you ladies make me feel better reading your posts. Same as you @Flaneuse I manage to get the first letter out if I'm lucky.  People look at you like you have 2 heads and I just try to laugh it off. This bloody BC keeps on giving.  Am dreading the return to work in the next couple of months just worried I won't be able to cope.  Like you @Kiwi Angel  the work load is high. Those doing a similar job as myself have to get  work an hour early to get the work done.( no pay of course ) No morning tea and No lunch break straight through and every time we have a staff meeting the work load issue is bought up to management its the usual comment of must be "TIME MANAGEMENT"  issues.   It makes my blood boil.  Time management issues my A*#E.   Makes you think, an extra hour and a half a day they get out of us a day for free and work that out over the fortnight.  Anyway sorry this post turned into a rant and rave. As you can see my dread for returning.  Always hard when you live in a small country town to change jobs as there are just not the jobs available or because you weren't born here its who you know.   
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
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    @kitkatb - bloody time management issues excuse - what a load of crap!!
  • kmakm
    kmakm Member Posts: 7,974
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    @Blossom1961 Osmolax worked better for me than Movicol. My GP recommended it.
  • kmakm
    kmakm Member Posts: 7,974
    edited November 2018
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    I am not at the laughing at stage. I get embarrassed. My family laugh at me and I feel a bit humiliated. I must be prideful or something. I'm certainly still resentful rather than accepting of all that cancer has taken from me. I am chafing hard against my diminished quality of life. I will be working on this with my psych...

    I'm interested to see what happens when I take a break from the Letrozole next month. How much of it is related to the AI as opposed to sleep deprivation, treatment recovery and/or stress.
  • kezmusc
    kezmusc Member Posts: 1,544
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    @kmakm

    Had to start laughing or continue to be somewhere in between pissed off, frustrated or just plain out depressed about it.  I did cry playing uno one day with the family when I couldn't possibly keep up with the change of directions card.  My kids said goodness mum, watch the game............tears.    
    Hopefully you can at least get some sleep on the break.  Are you getting excited for your trip?

    xoxoxo
  • Wonk
    Wonk Member Posts: 61
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    Well done @Sarnicad, if we can all get one person to go for their mammograms we have achieved something out of all this.  I’ve even threatened to book my friend in and drive her there myself!!
    Glad you had a lovely lunch and forgot about everything 😊
    That’s what friends are for.
  • JJ70
    JJ70 Member Posts: 983
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    Speaking of mammograms...if anyone wants to support the Can at 40. Do at 45. campaign for better awareness of FREE mammography from 40 and to lower the active recruitment af=ge from 50 down to 45, then LIKE and SHARE this FB page and also the pinned post at the top of the wall.

    I am collecting any BC warrior stories diagnosis age anywhere between late 30's - early 50's as part of the campaign, collating a book to take to government.

    https://www.facebook.com/Can40Do45/

  • Flaneuse
    Flaneuse Member Posts: 899
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    Don't forget the 20% of BCs that are lobular and don't show up on mammograms, including 3D mammograms. Need to have an ulstrasound to find them - and often, with difficulty. 
  • Flaneuse
    Flaneuse Member Posts: 899
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    Yet another night of not getting to sleep in spite of having taken a 30 mg Serepax. Lymphedema hot, stiff hands aching, ankles aching, old knee problem aching, me belly-aching! Pissed off with substandard brain functioning. Just ditched three books within 15 minutes - all shortlisted for the Man Booker Prize (pissed off that it's not just the straight Booker any more) - read three pages of each and thought - don't need this miserable story in my life. Pissed off that my podiatrist said yesterday that he's concerned by a black spot that became visible on my big toe after he cut off half of my horrible chemo-affected toenail. He said, "Given your history of melanomas, you should get this checked out at once." So - off to have that done tomorrow after I see the psych. Saw my Radiation Oncologist's registrar today. One fun outing after another. My skin has healed really well from the radiation, but new bursts of raised brown spots keep sprouting (six weeks since end of rads). He said, "unfortunately, that's not over yet. They'll keep arriving for some time." Apparently they'll never go away. So after I've healed from my changeover surgery next year, I'll get them zapped off. But there are dozens of them.

    It will be the anniversary of my diagnosis on 30th. I've just sent an email to invite my best friend and his wife to come to dinner to mark the occasion. They've been fantastic this year. 

    Have listened to a Dexter Gordon albumn and now on Anouar Brahem's "Le Pas du chat noir" - massage for the soul. And shall try another book - not a MBP shortlister.