Brain tumour stage 4

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Hi guys I am new on here 

my husband found out in may he had a brain tumour he had his operation end of may we waited for the results to find he has stage 4 terminal brain tumour on his frontal lobe  80% was taken to say our world turned upside down isn’t a lie 

he has now finished his first cycle of chemo and radiotherapy 

As his wife I have found it extremely hard to cope he has changed he isn’t the same person and apart of me feels I have lost apart of him already it’s heartbreaking but looking on the forums today I see many people going through the same and it gives me hope 

I came on here to look for friends who I can share my good and bad days with 

I have family but there not the best and I am unable to say how I feel because I know I would be judged 

if anyone would like to talk to me please message me 

  • Hi Trac

    a warm welcome to the group. So sorry to hear about what you and your husband are going through. It's too cruel.

    My husband (then 50) was diagnosed with a stage 4 brain tumour (glioblastoma) in Sept 2020 so I can empathise with the journey you have been flung into. Nothing prepares you emotionally to hear a diagnosis like that.

    Personally, I've found this group and Carers only forum - Macmillan Online Community and Glioblastoma multiforme brain tumour forum - Macmillan Online Community a huge source of support. There's always someone around to listen who gets it, someone to offer some support, hold your hand and offer that virtual hug when its needed. You're not alone. We're here with you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    If there is anything I can do to support, just ask. I'm still travelling this emotional roller coaster journey two years down the line. 

    For now, I'm sending you a huge virtual huge. You're coping so much better than you think you are (you'll just need to trust me on that). Please remember to take care of yourself here too. 

    love n hugs

    Wee Me xx

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

    1. Hi Trac My husband was recently diagnosed with GMB stage 4 and has had surgery to remove it also from the frontal lobe. He is due to start Radiotherapy and Chemo soon. He's 51 and we have a son who is 15. Trying to stay positive. Keep in touch x
  • This is so sad the world is so cruel my husband is 55 he has finished his first cycle of treatments the chemo was tablet form 42 day cycle and radiotherapy was 30 sessions daily but not weekends he was ok to start found the last few weeks the hardest part if u don’t mind me asking has ur husband changed personality changed? We have a son at 8 and a son at 14 please keep in touch xxx

  • Hi Trac, no my husband has the same personality. His mobility was hit hardest by the tumor. He's walking with a frame and his left arm still has some weakness. We go to Weston Park Cancer Hospital tomorrow to discuss his treatment plan. Been filling out the DVLA form today. How is your husband? Has he had another scan?

  • Aww that’s not good but he will hopefully get his strength back in time if there is a Macmillan centre at the hospital they are really good helping fill in forms and help u with claims ect well I hope all goes well tomorrow for u I am going to ask u a question and if u don’t want to answer it’s 100% fine but what have they said regarding time or was the full tumour taken away so my husband had his op 24th may he had scan before radiotherapy and chemo but his next scan is end of October which will be after his 2nd round of chemo we was ment to be at the hospital Monday but due to the queen it was moved to this Monday coming so hopefully they give him his second cycle to start for chemo atm I feel in limbo x

  • Hi Trac, my husband had a full resection of the tumour with they say little residue if any. My husband has asked about time but no one is committing and to be honest I don't think I want to know otherwise I'd be thinking about it all the time. Have you had the conversation with your children?. My son just knows Dad has brain cancer but not all the details. I'll let him ask questions as he wants can't believe I'm on this journey Sleepy

  • My husbands couldn’t all be removed and 20% remains because of where it is so we have been given time frame even with treatment treatment will not cure him but it’s ment to give a quilty of life regarding the children school have been so good and boy of my children have really benefited from the help they get there little heads are full of questions but I am guessing ur son is like my oldest he won’t want to ask questions to u because they don’t want to upset or bring it up it’s a really funny age but I suggest u talk to school as there is people there that can help x x 

  • Hi Trac this morning didn't go according to plan. Richard did a Covid test and it was positive. No Cancer Hospital appointment for us! Fortunately they did an over the phone appointment so it doesn't delay treatment.  I have a meet the tutor icloud meeting for my son later so I will let him know what's going on at home to keep an eye on him. x

  • Oh I am so sorry u have Covid to deal with now my husband and I got it in august and was ill for a few days bless u it’s really hard time for u keep ur chin up and if no one told u today ur doing a great job yeah it’s really worth talking to the school my sons schools have been great glad u managed to do meeting over the phone and things aren’t delayed for him always here for a chat anytime xx

  • Hi guys, sorry to hear your news re your husband, it’s just devastating news. My husband had a seizure on the 30th Aug, totally out of the blue… and it turns out he has stage 4 brain cancer, they can’t do surgery, I’m heartbroken. He is 50 and we have 2 teenagers…. Our life was perfect, now it’s over! He is away to start treatment to try and keep it small.

    I just can’t function, I’m so scared of my future without him, everything we had planned was together. 
    Any tips ladies on how to cope? It’s nice to communicate on here with people that understand x