Latest Blogs

  • 1 Mar 2013 - 01:13
    Mango's picture

    Have missed every other one because we didn't hear about them until afterwards, so taking a big step to attend this one and hopefully meet some fellow travellers and get a bit more hope for a future without deadly brain tumours.

    See some of you there!

    2 comment(s)
  • 1 Mar 2013 - 00:42
    glenys48woods's picture

    Would someone help me out after having a mastectomy and not having a recontruction with a false breast? This is what I have, being flat on my right side after a mastectomy in 2010.

    I don't like my false breast as I don't want to accept it. Why? It is because I lose when I take my bra off and gain the weight when I put my bra on. This to me is annoying.

    I find also when I lay in bed it is OK to be on my right side as the left breast is heavy and satisfying to me. Then if I lay on my left side it is upsetting as my right breast has gone. I can't cope with what I have said to you.

    9 comment(s)
  • 28 Feb 2013 - 11:22
    Peta Kaye's picture

    I was diagnosed exactly one week ago today. Triple negative breast cancer. My appointment with the surgeon booked for twelve days later.
    TWELVE days. I don't know if my days have passed so slowly as these last seven have. I have two small kids. Samuel has just turned 6. In fact his birthday was the day after my diagnosis. And Elizabeth is 3, turning 4 in April. So with just these two I'm busy. I have a wonderful husband, we've been married 13 months.

    3 comment(s)
  • 27 Feb 2013 - 20:08
    gn21's picture

    One of the things I have forgotten to mention is my determination to take holidays. Sometimes this would be difficult to fit in around treatments and clinical trial responsibilities. I recall one holiday required at least 4 international conferences (not just about me of course) to be able to go for 4 weeks, rather than the 3 weeks required between infusions.

    0 comment(s)
  • 27 Feb 2013 - 11:55
    gaila's picture

    Hi there, I am new to this - I mean new to having cancer (uterus) - diagnosed nearly two weeks ago and off for hysterectomy tomorrow. I had symptoms for a long time which I ignored and so I am convinced that it has spread everywhere, I am just so angry at myself for doing this to my family.

    15 comment(s)
  • 26 Feb 2013 - 21:17
    jobeth's picture

    Is there anyone with a GBM tumour that is inoperable on Avastin? If so, has it slowed progression?

    6 comment(s)
  • 26 Feb 2013 - 17:10
    Peta Kaye's picture

    It was odd, being in the doctors surgery, hearing my long time G.P say the words, "I'm sorry".
    What was he sorry for? It's not his fault. He didn't give me breast cancer. It wasn't some pill he made me take, or anything he ever did.

    Then everyone I tell is sorry. My sister. My mum. My best friend. Everyone is sorry. I'm still just numb. Walking through a fog. Pushing my way through the jelly like day, waiting for the appointment with my surgeon in a weeks time.

    3 comment(s)
  • 25 Feb 2013 - 15:10
    gn21's picture

    Luckily my dr had arranged for genetic testing and the results are in. Positive for EGRF. So he is able to offer me a clinical trial. Tarceva, which is tablet based, and pertuzumab. And so starts 9 weeks of hell. Tarceva is known for its side effects and I get them all, at grade 3 level. Lose nearly 20 ks, the rash makes me look like the scientific experiement that I am, diarreah, low potassium and magnesium, borderline blood results, and hair loss! We drop the dose etc and dr is concerned I need to come off it but I am determined to get to the 9 weeks scan results.

    3 comment(s)
  • 23 Feb 2013 - 23:57
    Tammy Woods's picture

    At 4.40am yesterday morning (22/2/13), my husband took his final breath. I was with him until the end, and I know that he is in peace now.

    I spent some time today with the funeral director and walking around the crematorium finding a beautiful final resting place. Trying to get the eulogy and funeral details sorted, but I'm not in a good head pace right now.

    9 comment(s)
  • 22 Feb 2013 - 18:29
    gn21's picture

    Scheduled for surgery in March 2009. Being a tough as old boots I just get partner to drop me off and come see me the following evening. But fate intervened, and he appeared in my post surgery haze telling me that the surgery had to be stopped as the cancer was more widespread than appeared, and pathologist bought in to view results thought breast cancer cells were making an appearance. Great!

    Original specialist drops in to say 'this isnt what we wanted to hear' and charges me for the appointment!

    2 comment(s)

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