Brain tumour support

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Hi, husband diagnosed with brain tumour on Christmas Eve.  Been struggling to deal with this huge change.  Initially they said radiotherapy and chemo best chance of extending life and keeping him well although it sounded a scary short prognosis, but just found out yesterday that they have re-reviewed his case and are going to do surgery first.  They say they can’t get all of it out but will try for as much as they can.  We have pre-op next week then all being well operation should be week after. I swing from feeling positive to despair and all sorts in between but trying to be strong for him and his elderly mother.  But terrified about basically everything to come. Thanks for reading.

  • Hi 

    things have been challenging lots of seizures but things have calmed down for a week and hubby it now out of hospital. Treatment should start in 2 weeks. How are you? X

  • So pleased to hear things are calmer.  What treatment are you going for and how are you both feeling about it?  We start radiotherapy tomorrow morning and also pick up his chemo tablets and both then run together for 6 weeks.  hubby is VERY anxious and i think bottling it up too much and so feeling quite sick this weekend and sleeping a lot.  i'm hoping if we can get through the first appointment smoothly tomorrow we can get in a sort of routine with it.  as always i'm trying to be positive without being unrealistic, but its very hard sometimes.  still can't believe this is happening to us xx

  • Hi

    I am in a similar situation as you. My husband was diagnosed after a seizure collapse in September 2023. He had surgery to debunk and managed to remove 90%+. He then had 6 weeks intensive chemo/radiotherapy. It has been such an emotional rollercoaster and I find it really tiring (making me feel guilty) trying to be strong for me.

    epilepsy medication was adjusted for him with no further seizures.

    We found out this week after an MRI that the tumour has shrunk, so I’m keeping everything crossed.

    I hope things are a little easier for you and your husband. Sending a virtual hug. 

  • Hi AlyG

    Thanks so much for your message. You are a few weeks ahead of us but yes our situations sound very similar. We are 4 weeks into the 6 week radio and chemo therapy and have the scan booked for 2 weeks after to see how the tumour has reacted which we are very scared about. I hope your consultants are being positive about how things have gone for you and your husband.  I feel selfish to say I sometimes miss my old life so much as this is all consuming.  I hope you are doing well xx

  • We are very fortunate the Consultant and team are fantastic. 
    My husband has been taking Milkthistle (bought from Holland & Barrett) because his liver function tests were getting too high and the chemo had to stop. Apparently it helps cleanse the liver but I’m hoping it is having an overall positive effect.

    i feel selfish at times too, but I guess this is normal. X

  • Please let me know how things go on your journey. I send you and your husband lots of good wishes and strength. We too are blessed with a lovely medical team. Big hug x

  • Thank you. Please update us with your journey too. It helps to know we are not doing this alone x

  • My husband as that op. Sept 2023.  Debunk. Had. Chemo. Radio from 21st. October  30th November.  Started. Chemo jan. for 6 months.  The scan. Said. It’s. Worked. Only tiny. Spec. Left.    It as skrink. Did get bit. Bigger when. We went cancer  hospital.  But. No. Tiny spec.   Now 

  • That is great news that the treatments seem to be keeping it reduced 

  • That's great news , I'm back in end of month 

    Lee