My husband has a gbm grade 4

Hi,

Thought I'd reply and say I share some of your thoughts/concerns. My husband was diagnosed Sept 19, he's had the 6 wks of combined radiotherapy/chemotherapy. He was due to start chemo cycle 4 of 6 last wk but it was stopped due to coronavirus. Our daughter is 27 so we're prob older than you, husband will be 55 soon. This is a terrible condition and I can't take myself to imagining life alone and what the end will be like. From what I've heard this differs depending of location of tumour. Our daughter joined the brain tumour Facebook group and has made 2 very good friends, might be worth you looking at. With time life does become a little more normal, just a different normal. We'd love to go back to last summer when life was perfect. You take care, always here if need a chat/rant x 

Hi Mills19,

My other half was diagnosed on the 20th February. Starting Chemoradiotherapy on the 14th April.

Hi JuSimmo

So sorry to hear your news. How is your Partner getting on? Does he have any symptoms from the tumour? Do you have any children? 

Hi LH66

your husband is a little bit further along the treatment then mine. He was due to start 1 of 6 chemo cycle next week but I’m not sure what will happen now due to the corona virus. Such scary worrying times. How is your husband feeling after the chemo and radio? My husband is so tired and is sleeping quite a lot during the day? Sometimes his memory is bad and sometimes his getting some words muddled. I would love to go back to last summer too when life was so perfect. I miss my husband so much a massive part of him has gone. Take care. Message me also if you ever want to talk x

Hi,

Radio/chemo tired Graham out and frazzled his brain. The tiredness was one of his first symptoms, he's continued to nap after lunch but no more than an hour. It seems very common to sleep and how long they sleep for seems to differ from person to person. He loved having no treatment for 4 wks which was over the Christmas break, he started his 1st chemo 30/12. Memory with Graham is patchy too and yes muddled words, right sided weakness has improved through exercise and writing etc. He's very sporty so was determined to get back to that. I so understand you wanting the old husband back, I think that too, thinking for 2 ppl has become quite normal. Generally atm Graham is really good, not sure for how long but then the docs can't tell you that, it's all statistics and the one thing I've learnt is there are good positive stories out there, so I cling to them. You take care xx

Hi.  My husband was diagnosed Dec last year so we are slightly ahead of your path.  We have completed  1st round of following up chemo and due to start next round 14th April.  You are not alone. Never feel that.  We are all in the same boat here and dearly wish to be able to turn back to clock to happier times.  You will find a "new" normal whatever that is. I find coming to this place helps because other people don't understand the situation and the pain you are in.  My guy is in okay condition at the moment . It took him about 3 months before he really understood what was happening.  He was very stunned at the start.  Every day is a new day and every day he is here is a blessing.  Take strong but part of that is being sad and letting the tears come.

Hi Mills19,

His short-term memory isn't good. I've only been with him for 3 years (but known him since 1986). He has no children. I've got a 22 year old daughter who has a 7 month old daughter, a 17 year old son, a 14 year old daughter, and a 12 year old son.

Hi mills19 So sorry you find yourself on this path. Yes it feels lonely at the beginning, but I have found this site very comforting and informative. Also, brain tumour support group have been very supportive, just meeting peopl in a similar situation helps, comparing notes etc.

yes, you will in time find a new “norm”. It’s a very emotional journey, full of twists and turns.

my husband was diagnosed in October 2017. His tumour was in the left temporal lobe, so short term memory has been a problem, along with speech difficulties. He had a craniotomy, after having first a seizure in bed from where they found the tumour - no other signs previously other than possible depression. 

Then 6 weeks radiotherapy and chemo (TMZ), a couple of weeks break, then started the first of 6 cycles TMZ. After his 5th there were signs of regrowth, so he started the more aggressive chemo PCV. He finally completed the full 6 cycles of that last April.

i can’t believe I’m writing this. For the last 2 1/2 years he’s had a “12/18 months” prognosis hanging over him, yet he’s still here!

hes now on 3 monthly scans -  had 4 “good” scans. He’s not the same person - it’s been gruelling and we have had some fantastic after care - speech therapists and physiotherapists, as well as complimentary therapy from the local hospice.

its a roller coaster of a journey. I focused on arranging trips/experiences away when he was well. PCV was very rough. 
And now Coronavirus.....

keep talking to friends and family. They will feel helpless but just getting your thoughts out there does help. I was resistant at first, but it does help. I spent the first 12 months thinking about how I’d cope without him. Yet he’s still here - family and friends will help.

take care. I’m here if you need to vent. You can friend request if needed.

sheila xx

Hi Sheila,

Your message gives so much hope. My husband's chemo stopped because of coronavirus. He's been told about 12 months life expectancy, we're now at 7 months and doing really well. Short term memory not great but generally we're getting on with life, well we were until isolation. As you say this group is a fantastic help.

Love to you all 

Lisa

Hello all,

I have only just joined this community today.  My husband was diagnosed in Feb he has had surgery and has started his radiotherapy/chemotherapy and have completed 5 out of 30 sessions.  As my user name states I am a mom of three I normally work full time but am signed off to support hubby (work are great) I am also worried about what is ahead and am finding a lot of comfort reading through these posts.  I am worried, I am scared for what will happen next.  I am worried about the future.  We have only had 5 sessions and today it is making some of the side effects known.  He is currently curled up on the settee snoozing and has slept loads more than normal today.  He has a headache too which he never had until the actual day he went to the GP and was sent to hospital.  It is a worry and more so with the current events of covid.  I can see some changes with him, his memory is not as good and he looks for things but does not spot them.  He gets muddled more easily too.  How do others find ways of coping through all these changes?  Is there any advice for what I can do?

Mills19 I know you are a little ahead of us, I feel the same but have great friends online and at the end of a phone.  I keep in touch with them and what little family I have.  It is nice to find that others are going through this or have gone through it.  It gives hope xx