• Skip to primary navigation
  • Skip to main content
  • Skip to footer
  • Home
  • recipes
    • baking
    • mid-week meals
    • time-worn tucker
    • entertaining
    • kid-friendly feeds
  • Latest Posts
  • About Me
  • Work With Me
  • Shop
    • Cart
    • Checkout
    • My account

Cooker and a Looker - Australian Home Cooking

Australian home cooking served with a side of farm life

  • Home
  • recipes
    • baking
    • mid-week meals
    • time-worn tucker
    • entertaining
    • kid-friendly feeds
  • Latest Posts
  • About Me
  • Work With Me
  • Shop
    • Cart
    • Checkout
    • My account
menu icon
go to homepage
search icon
Homepage link
  • Home
  • Latest Post
  • Recipes
  • Shop
  • Work with me
  • About Me
    • Email
  • ×

    By Amanda Smyth 25 Comments

    thank fac for smart people

    Share19
    Pin
    19 Shares

    Don’t worry Mum, that title says fac. It’s colloquial French for university.
    Yes, I know what it looks like. Yes, I meant it.
    No, I don’t think anyone will think less of me for it. Cool?

    The Little Sister was making churros and ice cream sundaes on the iPad behind us while the Neurologist listed our options.

    Yes it was Multiple Sclerosis.

    Yes it was time for treatment.

    Injections, they’re safe but old science.
    What else you got?

    Tablets, less invasive but incidences of fatal brain infections
    NEXT!

    An infusion of chemotherapy for five days this year and three days next year. Then potentially no more treatment after that.
    Tell me more…..

    And so we sat listening to my Neurologist outline the case for Lemtrada; pausing occasionally to ‘eat’ the ice creams that the Little Sister delivered. When he finished he said ‘if I had MS I’d do this’. With those words he kindly removed any doubt I had that giving MS both barrels was my best option.thank fac for smart people-3

    Alemtuzumab is a monoclonal antibody that binds to the surface of mature lymphocytes and marks then for destruction. After the mature misbehaving lymphocytes are destroyed, your body makes new ones from bone marrow. The hope is that the new lymphocytes don’t transgress like the old ones. That is, they’re not exposed to the same unknown triggers that caused the originals to attack the myelin sheaths of my nerves.

    The drug was initially used in the treatment of types of leukaemia but some clever chaps at Cambridge University saw the application for use in the treatment of MS patients.

    Their first trial wasn’t a success. I think the accepted position is that the trial was on patients who’s  MS had progressed too far. The drug can’t repair the damage, just prevent further damage being done.

    But the chaps at Cambridge weren’t discouraged. They knew the drug had potential and eventually it was approved for use in the treatment of Relapsing Remitting Multiple Sclerosis.

    The treatment isn't without risk and it's not suitable for everyone. There's a suite of drugs to take post-treatment and a strict monitoring regime that I've committed to following.

    thank fac for smart people-4

    I'm incredibly grateful to be offered this treatment; the timing is perfect....Lemtrada hasn't been around long...I'm lucky to meet the criteria...but there's also a $120k silver lining to the timing.

    Lemtrada has only been on the PBS in Australia since April 2015. Prior to that the cost for treatment was $120,000. (Why it costs $120k as an MS drug when it only cost $20k as a leukaemia drug is perhaps a blog post for another time.)

    I am incredibly grateful, however, that Bearhands and I do not have try to raise that kind of money. There are no guarantees that this approach will be effective. Deciding whether to gamble our financial future on a treatment that may or may not work for me would have been an agonising decision. I'm counting my lucky stars that I only have to focus on getting well.

    I head to Brisbane on Monday to start treatment. My support crew hss mobilised. I'll stay with Mum and Dad in Brisbane for the week while my wonderful in-laws Howard and Lynn help Bearhands with the kids on the farm.

    I'm apprehensive but confident that this is our best shot of continuing to live the life that we've planned. I'd like nothing more than to shake the hands of the two Cambridge researchers who knew their idea had merit and weren't discouraged after their initial set backs.

    As Bearhands said that night after we'd made our treatment plan, "thank fuck for smart people".

    Yes Mum, I actually typed it that time. I'll accept my lashings in the car ride to Brisbane on Sunday. 

    Share19
    Pin
    19 Shares
    « introducing Baby David
    expect a miracle »

    NEVER MISS A RECIPE!

    Sign up and be the first to receive new recipes straight from my oven to your inbox.

    Reader Interactions

    Comments

    1. Emily @ Have A Laugh On Me says

      June 01, 2016 at 12:00 pm

      Yes thank fuck for smart people alright. You have got this and when you haven't I'm here for you. xxx

      Reply
      • Amanda Smyth says

        June 02, 2016 at 9:30 am

        Thanks love. I had a call late yesterday afternoon from a nurse at the infusion unit. She was so friendly and helpful, made my stress levels drop significantly! 🙂

        Reply
    2. The Hungry Mum says

      June 01, 2016 at 7:44 pm

      oh wow, I am lost for words. I feel like I know you from the twitter / blogging worlds. Best of luck for your treatment.

      Reply
    3. Kirsten and co. says

      June 01, 2016 at 7:59 pm

      Thank FUCK for smart people (sorry Amanda's Mum for typing and shouting the word but I dread to think where we would all be without them.) I'll be thinking of you next week and have no doubt the treatment will be a success x

      Reply
      • Amanda Smyth says

        June 02, 2016 at 9:27 am

        Thanks Kirsten. I fear I've opened Pandora's box on the swearing. It's strangely liberating - fuckity fuck fuck fuck.
        There.
        Much better!

        Reply
    4. Kylie says

      June 01, 2016 at 8:33 pm

      There's so many people cheering you on. Go and kick MS's butt. You've got this. Thank you for being so inspiring.

      Reply
      • Amanda Smyth says

        June 02, 2016 at 9:25 am

        SO many people cheering me on. I'm lucky to have such a great support team. Thanks Kylie. xx

        Reply
    5. Sharon says

      June 01, 2016 at 8:48 pm

      Amanda I am sending you much love and light xxxxxxx as always I adore your amazing spirit and positive attitude. I know there is not a lot I can do but you will always be in my thoughts and my version of prayers xxxxxxx and also Kevin and the flying dogs xxxxxx

      Reply
      • Amanda Smyth says

        June 02, 2016 at 9:24 am

        Thanks Sharon. Give Maggie a pat for me! xx

        Reply
    6. Bec Senyard says

      June 01, 2016 at 9:08 pm

      Yes, thank goodness for smart people. Will be thinking of you and praying for this treatment, that it will work. Sending you all my love and prayers. xx

      Reply
      • Amanda Smyth says

        June 02, 2016 at 9:23 am

        Thanks Bec. I had a call from one of the nurses in the unit yesterday. She was so friendly, it really calmed my worried brain! xx

        Reply
    7. Amanda Kendle says

      June 01, 2016 at 9:17 pm

      Far out Amanda, I will be sending you every thought and hug and yes, the smart people will get this. You'll get this (coz you're smart too). I've been in my own little fog and missed your first post. Thinking amazing huge big loving thoughts for you xxxxxx

      Reply
    8. elizabuf says

      June 01, 2016 at 9:20 pm

      dear amanda's mum: please look away now....

      thank fuck for the smart people... who don't give up
      thank fuck for australia's medical system... (where i come from, a person could go broke just getting diagnosed and advised on treatment)
      thank fuck that there's still money for groceries... see above
      thank fuck for your support crews... what an an amazing group of people you have around you

      and in turn, we give thanks for you, amanda.

      sending lots of love. (and call on me if you need anyone to run some backup; i'm here in bris)

      Reply
      • Amanda Smyth says

        June 02, 2016 at 9:22 am

        Thanks Buf.
        You make a good point about our health system. I've joined a fb group for people having this treatment and so much of the conversation is about whether or not their medical insurer will pay for the treatment or worry about changing jobs mid way through treatment (and whether the new insurer will pay for round 2). I'm so lucky not to have that worry.

        PS. I love that you've offered to help. You're a darling. xx

        Reply
        • elizabuf says

          June 02, 2016 at 1:13 pm

          hey now, just because we haven't actually met (yet) doesn't mean that we aren't old friends (in my head)! ha.

          the COLLECTIVE OTHER MOTHERS are pulling for you, babe.

          xoxo

          Reply
    9. Nicole @ The Builder's Wife says

      June 02, 2016 at 5:13 pm

      Thank fuck for smart people alright! And for the 120K blessing. I'll have you here in my heart next week, keeping you close to send you love and strength. I'm here if I can help at all, in any way xxx

      Reply
    10. Melissa @ All Around Oz says

      June 04, 2016 at 10:39 am

      I'm a bit lost for words too as I hadn't read about your diagnosis. Sending you lots of virtual hugs and positive vibes xxxx

      Reply
    11. Kirsty @ My Home Truths says

      June 06, 2016 at 10:55 am

      Good luck with the treatment - fingers and toes and everything else crossed that it will work and not leave you with too many nasty side effects x

      Reply
    12. Karin @ Calm to Conniption says

      June 06, 2016 at 7:19 pm

      I just saw your post on Facebook about starting your treatment so just jumped in to see how you were. How brilliant is a Dr that gives his personal opinion too, not just his professional! Sending all the good vibes. xx

      Reply
    13. Vanessa says

      June 10, 2016 at 6:55 pm

      Thank fuck for them indeed. A friend with lupus has had a similar type (in the grand scheme, I'm not an expert, obviously) of chemo type treatment.
      You gotta love researchers that don't give up.
      Stay strong & kick some ass!

      Reply
    14. kit@lifethroughthehaze says

      June 11, 2016 at 9:58 pm

      Thank Fuck indeed! Where would we be without the amazingly smart people who refuse to give up when they believe they are onto something wonderful!
      I know you have finished your week now and I hope that things haven't been too horrendous for you.

      I think I saw a lady on the Today show this morning who had this treatment. She is doing so well now she is going to walk the city to surf and when she had the treatment two years ago was just about in a wheelchair!

      Thinking of you (and sorry Amanda's mum for swearing, my mum still tells me off at 45 too!)

      Reply

    Trackbacks

    1. necessity is the mother of invention - Cooker and a Looker says:
      at

      […] stitches are still in my hand. The site has become infected, one of the many downsides to being immune compromised. So instead of removing them yesterday, the doctor wrote me a script for an antibiotic and strict […]

      Reply
    2. what not to say to someone living with MS - Cooker and a Looker says:
      at

      […] I’m midway through a course of treatment that I chose based on peer-reviewed research and repl… Choosing my treatment was not a decision I made lightly – my future quality of life relies on picking the right one, so I paid attention. […]

      Reply
    3. you can't sugar coat MS, an update - Cooker and a Looker says:
      at

      […] means no new lesions for twelve whole months! There’s no real way of measuring whether the treatment is working, but no new lesions is an encouraging […]

      Reply
    4. 5 things every newly diagnosed MS patient should know | Cooker and a Looker says:
      at

      […] day to be grateful for the hundreds of brilliant minds working tirelessly to find a cure, and a day for hope that 2018 might be the year we kiss goodby to […]

      Reply

    Leave a Reply Cancel reply

    Your email address will not be published. Required fields are marked *

    Footer

    • Facebook
    • Google+
    • Instagram
    • Pinterest
    • RSS
    • Twitter
    • YouTube
    • Home
    • Latest Post
    • Recipes
    • Shop
    • Work with me
    • About Me

    STAY CONNECTED

    Footer

    ↑ back to top

    About

    • Privacy Policy
    • Disclaimer
    • Terms & Conditions

    [ninja_form id='2']

    Contact

    • Contact
    • About Me
    • Latest Post
    • Shop

    Copyright © 2021 Cooker and a Looker

    Copyright © 2022

     

    Loading Comments...