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Starting treatment 11 January.

  • Good luck. That will be my husband’s 77 birthday. He is currently in a beautiful hospice receiving wonderful care.

  • Good luck. Hope it all goes smoothly for you

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi weemee

    I must admit, I'm really struggling at the minute. The more side effects I'm having the worse I'm feeling about my outcome. I suppose I have no positive thoughts at present, and all I can think about is I'm going to get told after treatment is bad news. I hope you don't mind me messaging you with my worries x

  • HI Chris

    of course I don't mind you messaging. That's what I'm here for. I hope today has been an easier day.

    This journey is a bit of an emotional rollercoaster ride but as I mentioned on your other post, if there are new symptoms or anything worrying you, reach out to your CNS. It could be that its a simple medication tweak that is needed to level everything out for now. This is an ever changing scenario so try to go with the flow.

    When is your next scan? G used to get really anxious and bad tempered before those. We all did. It's all too easy to over analyse every wee change and fear the worst.

    I'm not going to patronise you about thinking positively. One of my coping tricks on the rougher days was to break it down into bite size chunks eg if I can get to 10.30 I can have another coffee, 12.00 then its lunchtime, etc. Add in wee rewards for reaching the milestone. It's all mind games but they work. I journal a lot too. It's a safe way to vent all the frustrations and fears and when you see the words written down in black and white, it helps to take the power out of them and they can seem less scary. Just another trick to try. 

    Please remember the helpline is there too. The number is below.

    One step at a time. One day at a time. 

    sending you a huge virtual hug and lots of strength.

    love n hugs 

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thanks for your reply. Really appreciate it. I spoke yesterday with my team, starting more meds today for mouth sores etc.

    My treatment number 30 is 1 week today. Then a 4 week break. I've then got appointment with the consultant on the 15th March, so I'll be having scans in-between, and discuss at appointment.  Yeah very anxious to await the good or bad results. 


  • Hi Chris, hope your tolerating the treatments well.  I been a caregiver to a family member with similar GBM Grade 4 for now 5 plus years.  He is kicking around. Best wishes to you.

  • Hi Sparkles 123

    Thanks for your message.

    I'm now near approaching cycle 3 of chemotherapy treatment. Which will start on Monday the 20th May. Its a triple dosage of temozolamade. Then I've got a 3 month scan due on the 24th June.  It was meant to be yesterday, but got cancelled as would of only been 2 months in between my last scan, and wouldn't show a true reflection on how the treatment is working. 

    • I was all mentally prepared also. As is an anxious time. Nevermind. I'm glad he's still kicking around, and 5 years on, gives me hope. X
  • Hi Chris, these scans are always delayed. You will get use to it. I think just remember temo is what they consider golden standard, and continue your meds / cycle on this for as long as you can. GBM is never fully curable, I hope you’re able to enjoy life - mobility wise and cognitivity because my family member isn’t but as said - he’s here. He’s doing his best also. Keep your spirits up