Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Glioblastoma grade 4 brain tumor

Michael143
Posted by

New to the site. My dad had 2 seizure in the last 4 months. Original suspected stroke. He lost fullivement down his left leg. CT scans followed which were inconclusive. He couldn't have an MRI as he has a pacemaker. Eventually a CT scan showed something on the the right side of his brain explaining the impact on the left side of his body. He was prescribed 4mg of steroids (dexamethasone) and 2 anti seizure drugs.  

He started to deteriorate before the biopsy was carried out, the results which we have just received, grade 4 glioblastoma. He needs help to do most things and is immobile. Non operable with a course of RT suggested with the aim of slowing the tumour growth short term. Was told it's a matter of months before my father dies. He is my rock. Trying to digest it all and watching him go through this is unbearable. 

Gillian59
Posted by

Hi Michael,

So sorry to hear your news and your Dad's case sounds very similar to my Mum's.  She is 87 and I called an ambulance last Thursday suspecting she had had a stroke.  She lost all control on her left side - arm, leg and drooping mouth.  She had a "funny turn" at the beginning of February, which she ignored and afterwards we began to wonder if it had been a TIA, as she started having other strange symtoms - depression, not eating, some confusion and then the episode last week which perfectly mimicked a stroke.  She had a CT scan in A&E where the tumour was detected.  An MRI the following day confirmed grade 4 glioblastoma.   She has been on a high dose of steroids for the last week and she soon got control back of her left leg and face but the left arm was still useless yesterday when we had the consultation with the oncologist. He said there is nothing to be done and also said it would be a matter of months.  Against all odds and as if to prove everyone wrong, she has now started to move her left arm and hand today.  She has got her spirit back and was tonight doing newspaper quizzes with us in the hospital. We realise that this is just a respite due to the steroids but after such devastating news yesterday, it was uplifting to see her today and we just need to enjoy what time we have left.  She is also my rock and has helped me through lots of life's traumas in the past. 

I hope your Dad sees some improvement with the steroids.  I think Mum is on a higher dose but we are all aware that these benefits won't last forever before she starts to deteriorate.

Best wishes for the future

Gillian

Michael143
Posted by

Thanks Gillian. 

He too got some improvement about 6 weeks ago after taking the steroids (was actually the max 2 doses of 4mg). At that point it was being treated as a low grade tumour since the CT scans were not conclusive. The deterioration since has been frightening. Confirmation yesterday of grade 4 glioblastoma has just wiped us out. Fortunately I took my mom and dad out of the room once the official diagnosis was given so I could ask the more painful direct questions. Dad doesn't fully know and thinks some RT may help. I don't want to take all hope away.


Then there's the management of my mom who has worked/lived with him for 50 years. They have spent couple of days apart in all that time. 


I am reading on the forums a consistent theme of how cruel brain tumours are (not that any other cancer isn't cruel). The pace and ferocity of the changes are sometimes unbearable. 


I understand there is help at hand from a number of sources like Macmillan but I am trying to get him into a nursing home as day care is simply inadequate given his mobility is almost zero. 


Thanks 

Michael143
Posted by

I am pleased to hear that she has perked up a bit enough to engage with you all and play cards etc. 

It's no consolation and a cliche I know, but  these are the moments we hold onto. 


I hope you have many, many more to come. 

Buttercup2017
Posted by

So sorry to hear of your dad's condition.

Is he at home now? The OT's at the hospital and also local authority should be able to provide assistance in terms of carer care in between helping you decide about the future.

My MIL has lost mobility but can walk around with a zimmer and at the moment, can go to the toilet herself but unsure of what the future holds.

20yearsadaughter
Posted by

hi mi mother in law has this type of tumor in the back of her brain was diagnosed around 6 weeks ago she tryed 1 round of oral cemo 5day course in 4 weeks sadly hasn't had.any impact on the tumor and she is getting palitive care now and has accepted it. How is your dad taking it? I'm sending lots of hugs as.u will need them hope he gets the best out of life the now and enjoy every min with him :) god only takes the best xx

Michael143
Posted by

We brought him into hospital yesterday as his tremors got quite violent and we were worried he would have a major seizure. We are waiting for potential RT which will be minimum a couple of weeks away given he had his biopsy 2 weeks ago and they like to leave some time for the biposy swelling to reduce before administering RT. 

Ideally the hospital will say he can stay in till and during then. 


mjb-help
Posted by

I'm sorry to hear about your Dad. I don't post on hear very often but if I ever feel I can offer a comforting word then it may make a difference to someone's day.

My mother was diagnosed with 5 tumours in her brain in august last year. She had twice beaten cancer before and wasn't strong enough to fight it again given the prognosis. She made the brave decision, with our support, that she would chose the palliative care route. They gave her 6-8 months with treatment but couldn't say without. She was on Steroids up until the last weekend in Sept and then started having some bad headaches at home. My dad managed to get her through Sunday and into Monday with the Oromorph and other painkillers  and the ambulance came and took her to a nearby hospice. By this time she was pretty much unconscious. She passed away very peacefully on the Tuesday. It was devastratingly quick in the end which was as kind as it was cruel. I was so scared of what the end might be like along with my Dad and my sister and we were relieved that it wasn't at all like the indignity that some poor people suffer. She was my rock and I spoke to her everyday to tell her I loved her. I've never lived more than 8 miles from her and the news in August hit me so hard....I used to cry myself to sleep every night but you find the strength, partly because you have to.

Stay strong and do what you need to do to make the time your dad has left the best it can be.

Michael143
Posted by

Thanks for your post. Most helpful. 

I suspect it will be borderline whether he has RT in a couple of weeks.Your mother's swift deterioration is what I am expecting with my dad at some point soon.

Trying to hold on strong for everyone else including him. Don't want to show him I'm upset or other family members. I cry in my own time randomly. 

Good to share some this here ....

mjb-help
Posted by

I found it a very helpful forum and it was comforting to know that there were other people just as scared and upset. I think the first days after my Dad told me were the hardest - trying to coming to terms with the fact I would lose my mum. I wanted to talk to people, anybody...but I found it impossible without breaking down. I just couldn't get the words out. I used to talk to my Labrador when walking him but I would still end up in tears, miles from home.

Only people who have been through this and are going through this can understand and there are some very kind people on this forum that helped me to stay strong and focus on what I had to do for my family and my mum.

you will cope and you will get through this.

TFstar
Posted by

Hi there, 

I'm very new to Macmillan and it's community.

Your story struck a chord and I just wanted to say how sorry I am and you're not alone. My mam fell ill with a stroke/bleed on the brain when I found her day after mother's day.. It's unbelievable when I look back.. I just didn't see the signs and I spent nearly ALL of my spare time with her and if I wasn't face to face I was on the phone to her! We've just got back today from her 1st official oncology appointment when me and my siblings were told she has 3mths to live and no chance of treatment other than steroids and palliative care... it's double shocking as although memory, concentration, mobility has been affected she seems no where near at the end of her life!! She's such a fighter and (although some bad days) she still insists on doing everything by herself and with help will even make ME a cup of tea!! Always caring til the end!

I have no words other than this all feels so unfair.

Virtual hugs and Kindest of rgds,

Victoria

jaynehelen77
Posted by

Hi Victoria  I thank you for posting i'm so glad  I found  this site what a day my family are in bits but we will  fight  it  with  everything as the oldest I want to look  after  everyone  my dad is my world as I'm sure your mam is you sound like your doing a wonderful job always here to support you all the best jayne 

TFstar
Posted by

Hi Jayne, 

Lifted my spirits to see that someone heard me so quickly! Thanks for responding! Feels good to know we are not alone! I'm actually the youngest.. My brother and sister are 12yrs older than me and I feel my brother (as the oldest) feels like he needs to look after everyone too..however.. And unfortunately he's just not the "feelings and emotions" kind of man (although he tries) and neither is he good with the hands on caring side.. which is totally understandable. I think in times like this everyone needs to know they're useful and helping out in some way. I've been there since day 1 of this saga and I've had only 2 days away from the situation. It's exhausting emotionally but I know I'm doing the right thing... has your day been hard? Reach out to me anytime and I'll do my best to reply.. here to support you too if you should need a pair of virtual ears and shoulders! 

Kindest rgds

Victoria

jaynehelen77
Posted by

Bless you Victoria you are amazing you sound like you are doing an amazing job my dad got diagnosed today we will take every day as it comes love from derbyshire 

jaynehelen77
Posted by

And I wanted to add you are a brave person  well done for  being on here so I can talk to you x jayne x