We Talk Brain Tumours

FormerMember
FormerMember
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Hi everyone

I am just trying to navigate myself around the site.  Still struggling, but thought I would try and make a temporary place for the WTBT folk as we are all wandering round like lost souls at the moment- don't know if this will work- but worth a shot while Mac try and resurrect the old thread

Love Ali xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Let me guess Ilowe.  Your sister is on Dexamethasone?  It's well known for increasing appetite.

    Ali was much the same, despite one of the after effects of the Dex being insomnia.

    There is a low of pleasure to be had in food, so just feed it, is what I say...!

  • FormerMember
    FormerMember in reply to FormerMember

    Ilowe, glad to hear your sister is doing better, I hope this continues throughout her radiotherapy and chemo.  As soon as you start to feel a bit better, EVERYTHING seems better.

    Slightly off topic, today is the funeral of little Charly Johns, her mother uses this site.  Charly bravely and humorously fought ď»żNeuroblastoma for a few years, sadly losing that battle a couple of weeks ago.  As a typical 8 year old girl, she loved all things pink and sparkly.  All those who knew her/knew of her are painting their nails pink today in her honour - that is MEN, WOMEN & CHILDREN.  Me, I don't really do pink but, my middle child Sean had a day trip to France during my RT and brought me home a shockingly brightly fuchsia pink felt beret to cover my baldness.  I shall be wearing this in her honour as her family have her final send offl in Paris (beret seems even more fitting now) for my walk to Tesco's.  It's a real head turner, cos I know its not my face LOL  Just wanted to share, I've seen pink nails all over facebook being posted, friends I've made on here that I've taken with me.  The power of compassion is amazing, the cancer community is amazing!

    I wish you all the best weekend you can and that your circumstances will allow.

    Love & Strength to all who want or need it xxx

  • FormerMember
    FormerMember in reply to FormerMember

    RIP Charley Johns xxxxxx

  • FormerMember
    FormerMember in reply to FormerMember

    I spent the morning in Reading today having a bit of quiet time. While I was there, I went into the cancer ward in the hospital and gave a card of thanks to the nurses for looking after Ali so well.

    It seemed odd to go back there, everything was just so familiar.

    I also went down to the cancer centre and managed to get a few minutes with Ali's oncologist between his scheduled consultations.  It just felt good to let him know what had happened and to thank him for all of his compassion and tact with which he dealt with us all those months ago.  I wanted to let him know that he was appreciated.

  • FormerMember
    FormerMember in reply to FormerMember

    Enter your message...

    Pete

    Haven't been logging in so much recently and was shocked to hear you news - so sorry to hear - you have been an inspiration to many of us on the train.

    Charlie 

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you so much for the message, Charlie.

    If I've been at all inspirational here, it's just a reflection of those here who have gone before me (and who still remain).

    Yes, Ali's passing was sooner than we expected, but she went the way she would have wanted, with dignity and without fuss.

  • FormerMember
    FormerMember in reply to FormerMember

    Oh boy.

    Just been packing up some of Ali's clothes to take them to the charity shop.  There's some there that I remember her wearing very often, some I remember from her "dressy" times (weddings, going out to restaurants, etc), some I don't remember at all, some that I just question entirely (cordouroy blouses?!?!) and quite a few still with the tags on from where she bought them and never wore them at all.

    Some, I've kept for the family to decide over as I know some people would want to keep some items.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Pete.xxxxx   :)

  • FormerMember
    FormerMember in reply to FormerMember

    A glass of pinot for whoever needs it tonight....

    And I have some Black Magic chocolates with the mushy fruit centres to give away too....

  • Good evening,

    Not sure my taste buds are sorted yet as wine doesn't do it for me yet (weird I know!) but I'll have a bottle of Old Speckled Hen with you ... and possibly a Black Magic. Strange mixture, I know, but somehow it might just work - trust me.