hi, my husband had a surgery last Saturday and my whole world had crashed. GBM grade 4. I’m lost, and scared. I have 3 kids. 16, 13, 13

[Manty54]

I’m looking for emotional support and chat. I live in California. My whole world has crashed in a second. What do I do?

[Tansi75]

Hi Manty54,

Sorry to read about your husband; I was diagnosed with a grade 4 GBM in May 2010. So it is possible to live beyond the expected prognosis.

Can I suggest that you down load the Brain Tumour Charity's BRIAN APP, which will give you access to support and the various posts I have placed about my experience on the discussion board, which you will hopefully find useful.

I appreciate that at the moment you and your family are feeling as if your 'world has come crashing down'. But you all have the ability to be able to get through this situation with a positive future ahead of you.

Most importantly you must be strong and positive, this will probably seem a strange thing to say, but try and see your husband's diagnosis as an opportunity for change. A high grade tumour diagnosis can mean 'change of life, not end of life'.

Did they manage to remove the whole of the tumour? If not, don't worry, that is not unusual.

A couple of important steps you can take to help your husband fight back, is change of diet. Cut out all unnecessary sugar, which feeds cancer cells; include blueberries, pecan nuts and turmeric spice in his diet, which have anti-cancer properties - they have been part of my alternative anti-cancer treatment since 2010. You will find more details of my 'alternative anti-cancer' treatments on the BRIAN APP discussion board.

In the mean time focus on living every day one at a time, taking it one step at a time. Do not waste time and energy on 'what if' scenario's and focus on the here and now, keeping one eye open on a positive future and believe that this can be achieved. More than anything, laugh as much as possible, which is after all, a great healer.

If you have any questions, please leave a post and I will get back to you. I do use the BRIAN APP on a daily basis, so you can also contact me there as well.

Wishing you and your family the very best for the future.

Stay strong and believe in a positive outcome. 🙂

[Denni60]

Don't be scared Manty, I am doing really well. I have the same and just finished 16 months of chemo I have just had last lot. Please be positive that really does help. When he has recovered from surgery. Try and keep him positive. Very important to keep up with normality of life. I go walking with husband, I try and keep focused. The oncologist always says I am really good. I know it is really awfull. But I am here should you wish to talk ok xxx

[Manty54 in reply to Denni60]

Thank you Denni. You made me feel better. I’m happy that you are doing well. Keep up the good work. I try to take my husband for a bit of a walk everyday, but it’s a struggle. He always says he is tired and doesn’t want to go. He was not a big fan of work out before his surgery either and now he just wants to stay in bed all day and this is very frustrating. I don’t want to push him but I want him to go into treatment strong.

[kukiiit]

Hi Manty! so sad to hear about your husband. My husband lost the battle this september after fighting valiantly for 26 months. He had glioblastoma grade 4 on the right frontal lobe. Initially after doing the mandatory chemo cycle and radiation, we found that chemo was not effective and that his GBM has spread. we were shattered as doc gave 3 months prognosis and told us to give him whatever food he wanted. he immunity nosedived to 6 lymphocyte count. but from then on, we took the challange, researched on our own, and started giving him CBD oil, ayurvedic supplements, and good diet for boosting immunity. And thanks to all these, his lympho count increased to 30. CBD is a very good choice if you want to wean him of steroids. We have faced numerous challenges during this 2 yrs but we never gave up on him and tried every possible way to prolong his life. we created some wonderful memories those 2 years and both my children were constantly near him, showering him with all the love they can give. The disease is cruel and but a positive mindset, happy atmosphere and faith will keep you going and lastly please do explore the possibility of clinical trial. if initiated early, you husband will live for a long time. We weren't so lucky because by the time the trial was approved, he was unable to take it. so pls initiate the procedure early. all my love and prayers to you.

[Manty54 in reply to kukiiit]

thank you kukiiit for sharing your story. I’m so sorry about your husband. I’m glad you made good memories for 2 years though. I can’t make any good memories because everyone I look at him I want to start crying. He is so positive and hopeful but I’m not. I’m so nervous and just have bad thoughts in my mind and keep thinking what would my kids do without a father and mother who doesn’t work and knows nothing.

[kukiiit in reply to Manty54]

Hi Manty54

My heartfelt condolences. Didn’t check my mail for quite sometime and wasn’t aware of the sad news. May god give you all the strength to move forward in life. The past two years totally drained me as well and despite the unbearable void, I have carried out the responsibilities bestowed on me. My children too are missing their father so much. I need to be their pillar of strength. You too must have moved forward and taken the rein. Be strong dear. God is always with you. Despite everything, don’t lose your faith in god. Love and hugs to you.

[CK1310]

Manty I am so sorry to hear your husband has a GBM …

I was recently diagnosed with a GBM .. Yet ironically despite all the surgery etc one of the hardest parts so far for me has been seeing everyone I love crying constantly.

To me sometimes it feels like they have given up on me already - while I’m still here waking talking and functioning.. .

Do not give up on him - choose life( & love) & hopefully he can find the emotional strength to give it his all.

I can only imagine how heartbroken you are feeling; but please remember miracles & healing/recovery happens ! All the time. Our bodies really are amazing. And there are people out there who survive YEARS post-diagnosis.

I hope you have some good support groups & friends around for you as you move through it.

Sending lots of love & prayers from Australia.

[Manty54 in reply to CK1310]

Thank you CK! I’m so sorry for your diagnosis. You are so right. He feels hopeful but tells me when he sees me around him upset it makes him feel terrible. My husband is also walking and talking right now just tired. his treatment is going to start next week. I’m praying he stays the same. My problem is that I’m thinking about future and that is wrong. I have to train myself to enjoy the moments with him and as you said our body is amazing and miracle can happen. I’m sure you can do it and I’m here to support you. I’m not going to give up on him and I will show him by trying to be happy and positive. If he is hopeful I need to be hopeful too. Lots of hugs from California 🤗

[CK1310 in reply to Manty54]

Of course it's normal and sensible to think about the future, esp because of you have children etc. It isn't healthy to deny how you are feeling- keeping it repressed won't help, so hopefully you do have people/emotional support there you can open up to when you need a friend to vent or just to listen.

You , your husband and your children are going through it together as a team; a united family unit. Also please forgive me if my first post came across a bit blunt - email / words on a screen can't convey tone. I'm just speaking from my own situation , which is obv very different to yours ; I've noticed such a difference in my energy when I am around people who have faith.

I do know me & my family esp were in shock - for almost a month. I only started really being able to read up on it and research approaches the last weeks of Dec when I was diagnosed in October 2023. It felt like we went through , or are going through all the stages of grief due to me being in ICU for a week /a half, even though I managed to survive the emergency operation and I'm still here.

To say it has been a rollercoaster of emotions for me (and my family/friends) is an understatement, as it's been so much to process. However at the end of the day everyone else can do 'normal' things and for me (esp right now during radiotherapy).. I'm a lot more limited than before. Banned from driving for at least another three months (if I m allowed again), struggle around social settings/ lots of people, going out no alcohol, sugar etc..

I have had to say no to a lot of people wanting to visit, and other distractions, to focus on getting through this stage.

For the first time in my life I am struggling with depression due to the circumstances - some days I honestly struggle to get out of bed as it's so overwhelming. And I'm tired of everyone telling me what to do all the time. But I'm finding new ways to get myself going, and motivated, to keep on choosing life as I know I am so lucky compared to others. Exercising helps me, and music. Even if it's just a few stretches or a 5 min walk.

However also give myself full permission to stay in bed when I need to -- cos it's my body and my life/ choice at the end of the day. No-one else can do this for me.

The hardest part for me is the loss of my independence and becoming codependent again - just like I a kid when I am a grown woman. However at the end of the day I am grateful I am still alive, and I am trying to focus on the good stuff (there is a lot) because I know focusing on what I don't have won't help. Tony Robbins recommended a few things on cancer when his wife Sage was battling it, he said the main thing was staying across the latest trials updates etc.

It's also been so overwhelming reading, researching different approaches etc and then of course everyone else adding in what they think I should do when I'm the one who has to actually do it. So I made a decision to copy what the thrivor/survivors are doing or do what I can to give to myself the best chance of longevity.

I found a little bit more on the latest research update and I have a few more things on the MTP if you need but it's a pdf - if you want more info on it I can hunt around and send to you. Just DM me on here (if that's allowed) and maybe I can email you it.

hindawi.com/journals/jo/202... - latest research - ironically a doctor who studied cancer who is managing his GBM

This guy's story is very interesting as well ..

youtube.com/watch?v=tEoHq9R...(Not working as expected?)

Praying for healing for your husband and your whole family.

[Snettisham]

Hi Manty54

Just reading through these posts and wondering how you’re all doing? I unfortunately am sat next to my husband who is in hospital, things not going so good for him. He has been in hospital for 4 weeks now…..and I know he values my visits, even though we can’t communicate much. It’s very tough, I cry a lot but I see it as a release valve. Fingers crossed things are going well for you xx

[Manty54 in reply to Snettisham]

Hi, my husband passed away in March 3 months after diagnosis. It was terrible loss. I miss him everyday but am glad he is not suffering anymore. Hope things turn out better for your husband. Hang in there 🙏🏼

[Snettisham in reply to Manty54]

Hi Manty54

I’m really sorry to hear this and I don’t know what to say to you. I hope that you have a good support network and people are kicking in for you. Life can be so cruel and you will never forget him, he will always be by your side and in your heart. Big big cyber hug to you and your young ones from across the pond.

[Manty54 in reply to Snettisham]

Thank you so much for all your kind words and support. It means a lot that a total stranger from other side of the world cares about me and my kids. I’m praying so hard for you and your husband. I have been through this hell for 3 months. Going from hospital to hospital . Rehab to rehab it was though. I feel your pain. Wish I was close to hug you and we could cry together. People tell me stay strong but you don’t have to. You can cry, yell and be angry trust me I feel you. Good luck with everything and God bless you 🙏🏼

[Imstillstandin]

Hi Manty54Ever so sorry to hear of your situation. Just been diagnosed myself with GMB wild 4

Had surgery now starting radiotherapy in.2 weeks

Im.sending my best wishes iover to you in the states

I fully understand the Unknown thoughts and fears as lm experiencing the same. Always good to talk to others similar position. As inexperienced l am.with this that l do know how talking helps in these groups and the Health Providers.

All Best Wishes For The Future

God Bless x

[Manty54 in reply to Imstillstandin]

I’m so sorry to hear that. I wishing for the best for you and keep you in my prayers. Unfortunately, my husband passed away after 2 craniotomy within 3 months. I’m still in shock that what happened, I’m glad he is not suffering anymore. I miss him everyday but will keep going to take care of our kids and making him proud. This was what he asked me to do and I will do everything in my power to do so. I was a stay at home mom I’m working now and part time student at 49. Life has totally changed for me and my kids but I will not give up. Stay strong my friend you can do this thanks for reaching out 🙏🏼