After brain tumour removal and ten days of radiation

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  • 4 subscribers

Hello all,

iVe just completed ten days of radiation to the head/brain after tumour removal early March. It’s the second operation at that site - apparently it’s a stubborn one!  I’m weening offf steroids now and the headaches are fading.  First brain surgery was Nove 2018.  I have had three lots for radiation and was told they will scan in six weeks and hopefully the radiation will have worked, however, if it hasn’t then I annoy have more radiation or surgery as that area is pretty mashed up and no surgeon would want to operate there again.

im wondering what other options would be available to me - chemo was mentioned but they are not confident it would work because of the blood/brain barrier.   I was diagnosed may 2016 with nsclc and had surgery to remove in nov 2016.  Was clear for nearly two years before being found in the brain.

I have had balance problems and fallen a few times now.  Last time was just a couple of weeks ago and I’ve really lost confidence when moving around - it doesn’t help that I’m icsolating so muscle are very under used.

inasked at the hospital about getting a crutch and was told I had to get my doctor to do a referral - appointment booked with doctor for Friday - I hope I won’t have to wait ages to see someone and get measured up!

if any of you lovely people can offer any advice or suggestions on hat may be available to me I would love to hear from you.

keep strong! 

Diana x

  • Hi Diana

    I hope you don't mind me popping in, as I'm not a member of this group, but I noticed that your post hadn't had any replies yet.

    I'm afraid I don't have any experience with treatment for secondary brain tumours but I've found this information from Macmillan for you.

    I've tagged my fellow Community Champion  into my reply to you, as she has had secondary brain tumours and looks after this group and might be able to help you further.

    I hope your appointment with your doctor today went well and he's got a crutch on order for you!


    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • FormerMember
    FormerMember in reply to latchbrook

    Thank you so much for reply.

    crutch hopefully being arranged but because if civic the occupation health not doing home visits but my lovely GPS are going to get in contact with a nurse at the hospice and are sure she can help me.  It scared me when she mentioned hospice I must admit - haven’t reconciled myself with that stage just yet...

    best wishes everyone 

    stay strong and positive! (Message to self!)

    diana x

  • Of course , hospices don't just deal with people about to die. I myself go to a day hospice once/ week. (Well, I did  pre- lockdown) It's more of a social gathering, but we also have an exercise/tai chi/ relaxation session, plus lunch n often a quiz n the chance to have a shiatsu session too.

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • FormerMember
    FormerMember in reply to buttercup01

    Thank you for replying to me I’m feeling a little better now.  I think lockdown definitely affecting my moods!  I am going to make an effect to stop having negative thoughts and be more optimistic and positive!, 

    diana x

  • Lockdown's affecting my moods too. I am overdue my routine scans ( end March) and have a certain amount of scanxiety about them. Yesterday felt pretty down - not surprising after 11 weeks.

    Thank goodness for the community!

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.