Why did I have to get the short straw?

Less than one minute read time.

I wasnt sure how to post this on the Melanoma forum so thoughi would try a Blog.  As you can see from my profile had a mole removed from my ankle two years ago, groin dissection etc.  I was all clear at my checkup in January and all was fine until I had a fit on Sunday.  Was rushed to  A and  E where they thought I had suffered a stroke. After endless tests I was discharged and told to go back to the Royal Marsden where they told me the cancer had spread to my brain and liver with lesions all over my body under the skin. I was fine until they brought in the palliative care team!!!!  I have to  have radio therapy next week which will hopefully restore the feeling in my left side (I am left handed) and stop any further damage to my brain.

They told me surgery wasn't an option.

Life is bloody unfair isn't  it?

Gill x

Anonymous
  • FormerMember
    FormerMember

    Awwww Gill there just doesn't seem to be anything I can add to your post other than agreement with you that life is bloody unfair.

    Can I ask why secondaries to the brain can't be operated on?   Or is just that secondaries can't be operated full stop no matter where they are?!

    Radiotherapy to the brain is totally painless, the mask/shell can be a bit daunting (depending on what one you have) but the treatment is very quick......you will lose your hair but it does grow back - kinda!

    Good luck with the treatment.

    Love & lotsa strength

    Debs xx

  • FormerMember
    FormerMember

    Oh Gilly, what awful news!  I'm afraid as far as melanoma patients are concerned there do only seem to be short straws on offer, and only the timing of when we get to draw them differs.

    I do hope that the radiotherapy can halt the spread of the disease and restore some feeling to your left side.  Can they test the tumours for the BRAF mutation and get you on one of the trials?  I know they're not a miracle cure, but there do seem to be some successes.

    Good luck, hun, I'll be rooting for you!

    Marsha xx

  • FormerMember
    FormerMember

    Hi Gilly

    God this is a wicked, horrid disease that always hits you when you least expect it.

    So sorry to hear your news. I know how devastated you must feel at this minute and my sympathies are with you. It is very frightening to have seizures and to lose all feeling in your limbs.

    Do you know if you are having sterotactic radiotherapy  or all over head radiotherapy.

    I had the stereo tactic radiotherapy last December and I just wanted to reassure you that it is painless although the mask you have to wear is a bit claustraphobic. Also the treatment room looked like a scene out of Star Trek and was slighly daunting. The worst part for me were the drugs. Have they started you on steroids and epilepsy tablets?

    Three months on and the tumor has shrunk and surprisingly I am now drug free. Although still sleeping a lot which they think is down to the radiotherapy.

    If I can help answer any questions on the treatment to put you mind at rest - just email.

    I wish I could do more!! - sending you a big hug

    Barb xx

  • FormerMember
    FormerMember

    Gill, I have some pics on my profile of me in my mask/shell - of course you may be getting the funky clear plastic shell which at least will have eye & mouth holes cut in (I think Classy Rioja still has pics of her daughters one on her profile)!

    I hope this treatment gives you relief from your symptons xx

  • FormerMember
    FormerMember

    gill hun, i have just lost my hubby to this awful disease , if i can do anything at all to help plz pm me, if you have any questions or just need someone to listen , big hug jenni x