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Rare cancer

Dilan
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I've just been diagnosed with a very very (my specialists words not mine) rare type of melanoma cancer. I've had amazingly thorough and very quick diagnosis and am in that limbo time of waiting for a treatment plan, and dealing with my families reactions. My specialist advised me and my family not to search the internet as new treatments etc are coming along and the info there may be out of date. It's hard just waiting though!  

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    Hi I too am recently diagnosed and waiting for a treatment plan. Found this site last night and it's so reassuring to see there are others out there. I think I am still in complete shock and already imagining the worst. I have been told you mustn't think of the end picture but just take each stage as it comes. Im trying to be so positive and have never been in a situation like this before. Think it will be a long waiting game!

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    Hi,

    I've been a melanoma patient for 23 years (firstly Stage 1 and now Stage 3). There are several new treatments now for melanoma & the landscape changes quickly so Google can't keep up. If I can be of any help just ask,

    Angie

  • Offline in reply to AngieT

    Thanks Angie. I'm trying to focus on the positive, and it's good to hear from people who have come out the other end so to speak! 

    Dilan

  • Offline in reply to mic-st

    Hi mic-st

    It's a really difficult time isn't it? My consultant said the next few weeks would be difficult while I wait for the treatment plan. It's also so hard telling people. Like you I'm trying to be positive and look at the many positive outcomes. I've had so many people telling me about how their relatives or friends are now cancer free, even some who were diagnosed as stage 4! 

    Dilan

  • Offline in reply to Dilan

    I've only told family at moment and a close friend I'm avoiding everyone else and social media until I know more. It's a horrendous time and feels like a bad dream can't believe this time last week my life was so normal!! Really worrying that i have secondary as I have experienced shoulder pain off and on for a while. I guess I can only wait and hope. I only know the horror stories apart from Kylie Minogue!! Can't really eat keep any food down at moment and my sleep is awful I just want to fast forward the next couple of weeks!  Any time you need to sound off i am here xx

  • Offline in reply to Dilan

    I've sent you a friend request. If you accept it I can then pm you to share advice and information that you may find helpful.

  • Offline in reply to AngieT

    Hi Angie

    I've accepted your friends request, not sure how this forum works all new to me!  Thank you so much. Dilan x

  • Offline in reply to mic-st

    Im the same as you. Close family and friends at mo. I don't think I can do this on social media, it's hard repeating and trying to be positive for them. It's a very frightening time. I have heard that you start to notice lots of aches and new pains! You become so aware of your body! 

    Like you I just want to fast forward to know the treatment plan! 

    Stay strong!

    Dilan 

  • Offline in reply to Dilan

    Gosh so true I've already convinced myself I have both brain and bone cancer as I have become so forgetful and can't think of words I just go blank and I've had a painful shoulder on and off for last few weeks too. I know i feel the only time I can be my true self is on this forum and I only discovered it last night. Think this will become my lifeline! We will get through this xx

  • Offline in reply to Dilan

    I've sent you a private message Dilan. x

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