Me and Rhabdomyosarcoma

  • Second Cycle at Royal Marden tomorrow. Feeling good.

    FormerMember
    FormerMember

    What an interesting two and a half weeks it has been. They have flown by so quickly. I've wrestled with fatigue, breathlessness, sore gums, zits and achy arms, and lots of other side effects but right now I feel tip top and more energetic then ever. My charity head shave helped me overcome the whole hair loss thing. I live in bandana's during the day, my Pompey FC beanie when it gets chilly, and nothing on my head when…

  • i'm neutropenic

    FormerMember
    FormerMember

    tut! sigh! back in hosp at the local DGH as had a fever early hours of sunday morning and a temp of 38.7oC.  Blood tests showed i had zero white blood cells therefore neutropenic, so got fasttracked to a ward and now in my own room as my immune system is so  weak. was given IV paracetamol to bring temp down but last 24 hours were the worse as it felt like i had tonsilitis. the pain turned me into a gibbering wreck. i cried…

  • Mei's Charity Head Shave Day for the Royal Marsden Cancer Charity

    FormerMember
    FormerMember

    It was a tough decision but I'm holding a fundraising event to help me through this time and to help raise money for the Royal Marsden Cancer Charity. I'm shaving my hair off before chemo gets to it.

    If you live locally and would like to come and support me on the day please feel free! Need all the support I can get. Will be a bbq and 80's music. I'm off the A22, 25 mins from Brighton. Starts at 6pm.

  • feel so lost

    FormerMember
    FormerMember

    it's 04.12am. Been crying for last two hours. I just feel so sad and sorry for everyone who is affected by cancer. I'm so so sad that what I have is more common in young children and that they have to endure the same tough chemo as me. It breaks my heart. These little human beings...how on earth do they and their parents cope? I'm a daughter, a sister and a mother. I dont even know how i cope. My body feels broken, but…

  • There's no place like home. Toto!!

    FormerMember
    FormerMember

    Well thank god that's over for now at least!! wow, the fatigue is unreal. never thought it would wipe me out like that....

    Still, I'm back home now having just had my first of 6 cycles for IVA chemotherapy at Chez Marsden. Day 2, 3 and 4 were awful and I feel nauseous just typing about it..

    I had Ifosfamide, Vincristine and Actinomycin. That ifosfamide..ooooh you evil little drug you, but necessary nonetheless…