hi x 

i hope you don’t mind me messaging you x 

my husband has recently been diagnosed with a grade 4 glioblastoma .. I’m not being nosy and know everyone’s journey is different but I want to be prepared of what could happen. 

If you could tell me anything that you think may help I would really appreciate it xx

many thanks 

Sally xx

Hi Sally just reading this thread as it is a bit personal to me as we lost our father to a glioblastoma just over a year ago, the sad thing about this cancer is that it is quite unpredictable but i can give you pointers if you like as to what you may come up against on this journey, hopefully, our experience may help you prepare for what may happen. it was not all negative x

Maybe speak soon, take care x

thank you x 

Im just feeling a bit overwhelmed by it all.. and just feel that if I know a little of what may be to come ( I’m aware everyone is different ) Id feel a little better ( whether it’s hood or bad ) I’m a bit of a control freak and the whole notion of taking a day at a time isn’t easy 

many thanks 

Good morning Sal29

In September 2018 i went to see my Dad, he was fine, his usual self ( he lived alone with Burt his dog as we lost our mum to cancer in 2011).

I always kept in touch as i live a little distance away but in October i was getting calls off my brothers to say dad was not his usual self so i went down to see him and he was very distant and confused, over the coming weeks this got worse so in November we marched him up to the hospital, he did not want to go. we thought he had had a mini-stroke or maybe he was drinking too much as sometimes he had.

They gave him a head scan and an hour later called us through, they had found a deep-seated tumor at the front of the left lobe, they sent his scans away to a consultant and hospitalized dad for a week to stabilize him then sent him home with steroids to manage the tumor while we waited for the consultant

A week later we had the meeting, Dad had a grade 4 Glioblastoma multiform but it was too deep and large to treat so they told him to get his affairs in order and set up various appointments for support.

He took it surprisingly well which was a blessing for us but from that moment we had to support him daily, my youngest brother and his wife saw to the day to day stuff but in the early week's dad got around just fine, in fact, the steroids had made him like a new man, he was out and about and generally being fine, the problems started when we had to reduce the steroids, they are key, Dad would struggle with mobility and appetite when lowered so the doctors kept putting them back up then taking them down so dad was all over the place but he did try to remain positive and very rarely complained, bless him. One big change was that he could not communicate the same, he wanted to say things but the wrong words would come out which could frustrate him sometimes, he developed fixations on different thing, his mind was playing tricks on him, ie he would send out for pies from a certain shop because he believed they were made special for him and only him, he became obsessed with a chip shop at the other side of town and he had to eat from there, what we would consider small things would be huge for him, he did keep some of his humour though.

In December occupational health and district nurses got involved to offer him and our support and we made plans going forward but by Xmas dads mobility was really bad and he had started to get edema in his legs, we were told that was a side effect of readjusting the steroids.

Straight after the new year, we had a profiling bed delivered to dads as he could not get upstairs, my brothers especially my younger brother took care of his daily needs and personal care, we found the more we did the less the district nurses coordinated home care for dad as they saw us managing so we were kind of left to it.

Dad would not get in the bed so he lived in his chair, he was on minimal steroids i think one a day. 

He was getting weaker and not eating and on the 19 of January we got a doctor out to him and my brothers and i gently lifted him from his chair and placed him on the bed, it was decided to administer his end of life drugs that weekend and he was given morphine just to calm him down, he fell asleep never to really wake up again and passed away very peacefully on Jan 22 the same date my nan passed on and was cremated on the 31 Jan the same date my mum passed on.

My dads cancer was very aggressive and every case is different, as a family, we were up and down but it managed to bring an already quite close family even closer, It was a very intense time and i think we made the mistake of not pushing for enough support, don't be afraid to ask for anything and everything that you may feel you are going to need, don't be afraid to ask any questions even if you just need to verify the answers you already have.

I am sorry to find my self speaking to you in these circumstances but if i can help you in any way with anything you may need to know i will just be a message away.

Best wishes to you all, take care x

thank you so much for telling me your dads story... I just have no idea what to expect.. my husband is having radiotherapy and chemo and like your dad was, seems like a new man. I’m hoping this continues but have been told that by the 2nd week of treatment he’ll start to tire 

thank you again x 

Hello Samantha 

verty sorry to hear about ur mum

I was working last October no bother 2019

felling fine when I came home my wife said lefty had side of my face drooped half inch  went to hospital

first taught belly pause, but before let me out did mri &found 2 tumers 1 had to come out straight away 

have another , but said to dangerous to remove ,have had 30 rounds 1 a day for 30day and kemo tablet 

when tested what tipe tumer they are its the grade 4 

astrocytoma , the consultant told me , ther is no cure 

but can manage it mabie 3 years very frightening

have had few seausersc since , on kapra but may have to up dose , ment to go on kemo 1 week 3,off 

soonand back for scan may 

t

Hi Sal29, 

I know you posted this a while ago but I felt like I was reading about me and my husband and just wanted to say how sorry I am that you're going through this awful time. (And everyone else on this site) 

We are a bit further down the treatment road, my husband who's just turned 50 was diagnosed with GBM4 last August so he's been through surgery and 6 weeks chemoradiation and is now on his monthly rounds of chemo. He's doing ok so far, we're trying to take a day at a time and luve as normally as we can. He doesn't want details of prognosis but I feel like I need to know what to come.  I  respect his way if dealing with all if this but not talking sometimes is difficult. 

I hope that your husband's treatment is going ok and you are ok

Take care x

thank you for taking the time to message me x 

glad your husband is feeling well.. so is mine!

im not at work at the moment and find myself overthinking things as I can’t chat to my friends. 

Ive thought about ringing his nurse to find out more about his prognosis but haven’t been brave enough

if you want to stay in Touch I’d like that x 

if 

Hi, 

I'm glad that your husband is feeling ok x

I understand completely about needing information and answers. I struggled myself with how much I could ask his nurse about. I did eventually pluck up the courage to ask some questions. They can talk generally if its without your husbands consent, I did get my husbands go ahead to ask anything but she still was fairly vague. The truth is they just don't know what will happen and when as this sort of tumour behaves differently with everyone. It devastatingly does limit their life we just have to keeping hoping for years not months. 

How is your husband coping with the treatment? Tiredness was the worst thing for my husband during and for a few months after radiotherapy.  He's still tired all of the time and he can't recall names for things or gets words wrong which us frustrating for him.  

It really is a case of taking a day at a time and staying hopeful and I really do know how hard that is

I am happy to Keep in touch if you want to x

I’d like that! 

My husband has been lucky and only suffered with tiredness. He amazes me with his strength.. he had brain surgery to try to remove his tumour and just bounced back as though nothing had happened! That’s why I want to know what will happen, I know prognosis of what he has isn’t good but he is just so well!! I’m incredibly happy that he is and like you say just take one day as it comes.

take care x speak soon