My husband has a gbm grade 4

Hi Mills24,

it was the worst news you could possibly here, the tumour is in the brain itself and he has weeks maybe a month or so left to live; it’s inoperable and they are going to try and treat it so just palliative care now, I feel in complete and utter shock and keep thinking how am I going to cope when he isn’t there and the boys he is my rock, my everything. 

Xx

Hi,

Sending you lots of love. 

Lisa 

xx

oh heather I am so sorry to read this. Big hugs to you. I’ve tried adding u as a friend. I’ve not really done this before I’m quite new to the group but if u wanted to message to chat I’m always here to listen and I know where your coming from. Everyone keeps telling me only think about today and now, do not think about tomorrow and just take each day as it comes. How is your partner? Is he still himself as much as can be? My husband is a different person. It’s like a massive part of him has gone and I miss him so much even tho his still here. My husband is my rock too and with this whole virus thing I’m so scared and I just need him more then ever and he can’t be there for me as I need to look after him now. Xxx

How is everyone getting on? I’m finding this all so hard. Missing my family so much. So hard being stuck in trying to keep us all safe. 

Hi everyone,

I think the only thing I am thankful for at the moment is the weather.

We are 9 sessions in now for radiotherapy with 21 still to go.

We do not have any idea on what time we have left as hubby did not want to know.

It is difficult but we are trying to take time and do something different each day.

My hubby is generally well in himself, only changes are he is getting more tired now and his memory and reading is worsening.

We are keeping in touch with friends and family on the phone and I have worked out that by having messenger I can talk to people via video call which is so lovely to see their faces.

In all honesty though I think we are in denial with the seriousness of it all as he is well you would not think there is anything wrong.  When changes come I am really frightened on then how I will cope and how the kids will manage too.

I keep suggesting about making some memories or writing a letter for the kids to look back on but that is something that is not being done yet.  I only know that from when I lost my own mom aged 12 I wish I had something of hers to look back on or to read.

With challenging times as well with covid that is an additional worry that none of us need right now too.

Keep safe everyone I am thinking of you all xxxxxx

From Emma xxxx

Hi Emma I am so terribly sorry you are having to live with this.

My husband Michael was diagnosed in 2014 after 2 weeks of headaches . He asked not to be told the diagnosis as he wanted to focus on treatment.  The surgeon told me and I did a lot of research into statistics , medications ,alternative therapies as well as the standard treatment .

Because he asked not to know we never discussed it . I began a micro manager of getting our son to school ,?Michael to treatments and working.  It did not not me it was like a drama on tv . It was real but not real .

Michael had it removed ( 7.5 cm) and chemo and radiation . He got all of 2015 clear with regular checks . How I wish we had taken our son who was at that point8 and travelled the world making wonderful memories. 

It recurred in 2016 and they keep it at bay on various chemist which did amazing damage to his personality moods etc . A year later he was deteriorating so much it grew back to huge size in 3 weeks . So surgery again plus chemo plus radiation .

He had 9 months from that point the last 4 being horrific for him and traumatic for me .

Still I wish he had left letters cards memories for us . I wish we had focused on making them . The damage from not doing this has been enormous . Michael wrote a journal throughput his life ..his last entry was when it recurred in2016  and from when he first was diagnosed it's only a few pages .

I have all his cards and all the comic verse and stories he wrote before he got sick ..which I treasure . But I wish he had written cards for our sons birthdays and Xmas.

I would just say if I could go back with what I know now ..i would somehow force him to talk about it ...and know the prognosis ..and focus on having happy times. 

Big big hug

Heather xx

Hi everyone,

How are we all?

Such a strange Easter, grateful for good weather but nothing makes up for not seeing family. 

We've set up zoom, web based conferencing tool, we were using whatsapp video but more family wanted to join in so needed something else. Once a week we all catch up together. Our daughter and us video call everyday which is lovely.

I know where all at different stages with this illness, at present Graham is really well, short term memory and being more tired still his only issues, time for afternoon nap for him now, usually 50 mins to an hour!

Take care everyone and stay safe.

Love Lisa xx

Hi Lisa 

Thanks for your message. It’s nice to keep in touch with everyone on here. 
Definitely agree that Easter was so strange. Miss my family so much. 
My husband is doing well also. Just tired and a bit clumsy on his feet. Still having an afternoon nap that can be anywhere from an hour to sometimes 2.
We’ve just reduced his steroids so I’m really hoping more side effects from the tumour don’t start to show. 
Is your hubby on steroids? 

Hope everyone is doing ok. 
xxx

Really sorry if I’ve got this completely wrong I’m pretty new to all this.

my dad is he got diagnosed in January with a stage 4 glioblastoma wild type. We were never told if they managed to remove any of the Tumor when they did surgery to diagnose.

dad has always been fit and well with no real issue and was still working up until he got admitted to hospital. A month later he was ready to come home however wasn’t allowed home unless somebody was there to care for him full time so I’ve moved in. We were given the 12/18 months prognosis with radio and chemo. Dad has however since refused all treatment now I have no idea where we stand with time :( up until about a week ago he was doing amazingly ! You would never of guessed he has this horrible cancer ! Yes memory was an issue but other than that life was some what normal. He has started to get a little slower and more shuffle in His movements and is now sleeping so much ! The last 4 days he has only been awake for maybe 3 hours a day, he saying he has a bit of a headache but it comes and goes with a throb.

its been lovely reading other people’s stories and knowing we are not alone in this journey

xxx

Hi

Is your hubby clumsy on his feet with finer movements, small steps indoors? Graham has since diagnosis had slight numbness on 1 foot that has made him slightly clumsy indoors when you can't stride out properly (hope that makes sense). 

Graham has been on steroids since diagnosis in Sept, highest has only been 6 mg which he stayed on until about 4 months ago, then started coming down. Was at 2mg for quite awhile because of chemo, now on 1mg, so hopefully will be off completely soon. 

Hopefully your husband responds well to coming off them. 

Take care and happy to chat whenever.

Lisa  xx