Brain tumours

For people affected by brain tumours or brain cancer to get together, ask questions, share experiences and support each other

Dad has glioblastoma grade 4 - need some practical advice

Piercey
Posted by

Hello

Out of the blue Dad (aged 72 at diagnosis) was diagnosed last June with glioblastoma grade 4, he had an operation, 6 weeks of chemo and radiotherapy, and in Jan started more chemo it was meant to be 6 sessions but he only managed 3.

We went back to the oncologist last night to get the last brain scan results and we got the news that tumour has grown and we have been presented with the possibility of another operation, but it would appear there would only be one more bout of chemo they can offer him.

I feel we are starting down the route of the final stages as in options are running out to us and they advised last night if they do the op they would only be extending his life by a matter of months.

I am devastated but I have started to think of practical things, what can we expect towards the later stages, is he going to have seizures (how do Mum and I manage these to ensure he doesn't harm himself during the seizure), loss of memory, loss of speech - what can we expect what can we do to prepare?

Then I have a 4 year old little boy who is incredibly close to his Gra Gra (as he couldn't say Grandad and it has stuck), he is aware Gra Gra has a baddie and this doesn't allow Gra Gra to run around like he did do, and he must do good listening when with Gra Gra.  What do I say and when do I say it? I don't want my 4 year old to see Gra Gra having a seizure.

Any help, advice would be very much appreciated to a daughter who is devastated she has to say goodbye to her Dad too early.

P

Rupert66
Posted by

Hi there

So sorry to hear about your Dad and the latest prognosis.  It has been a while since I have posted on here - I lost my hubby to G4 in July 2014 after a three year journey (I hate the word battle)...

I know you will probably get a few more replies but I hope my own personal experience can help in some small way?

My hubby's tumour was left temporal and after one successful operation to remove 96% of original tumour and then 6 weeks radiotherapy and chemo followed by six months more.  In early Sept 2013 we were hit by the news that there was a new tumour (old site was clear) and this was inoperable this time, as it was so close to his speech centre, though he had always said if there was any more growths he would not go through with the op again for what would be a futile end result.

He also chose not to have further chemo tablets (three more months max was offered) as he wanted to experience life outside of the hospital routine of appointments/scans etc..

Each brain and so each BT patient is different if that makes sense?  The general information given is that speech, memory, mobility may all be impacted on, or not; seizures may become more regular, or not; they say most patients towards the end will fall into a deep coma and slip peacefully away, or not.  These are the widest facts possible and it feels like at the time - how long is a piece of string?

My hubby had the one and only seizure that kickstarted the nightmare journey for us in 2011 - he was I know very lucky not to have any more after that one and he did stay on Keppra til the end.  He was still working three days a week when he was diagnosed as 'terminal'; he was 48 when first diagnosed in 2012 after what seemed like months of scans/discussions etc at two different hospitals.

He continued to work for a further five months which I am convinced kept him here for as long as it did.  During this time he was eating well, walking fine, talking OK, though he had had some speech issues since post op time (he had totally lost of power of speech shortly after the op but fought really hard to get back to a good level of speech and understanding)..

As we moved into those final months, his short term memory got a little bit worse, he did get tired quite early on in the evenings and he lost the ability to read the written word probably about three or so months before I lost him.  He could still just about write his name and sometimes his speech would come so fluently and then some days words would come but not sentences... That was really hard for my Dad who in his 80s was so close to my husband and he couldn't cope with the fact that his best buddy couldn't have a laugh and a joke with him as they had always done.  Hubby would sometimes get a bit frustrated if I couldn't quite get to grips with what he was trying to say but that was less frequent but I know it can happen with some BT patients.

Now the harder bits - in the last three months we had to put him back on steroids which he hated as he was struggling to bring knife and fork to mouth, he had mobility issues with his left leg and foot and he was not sleeping bizarrely at all.  So sleeping tablets were also prescribed.  I  also had problems with him 'night walking'.

It is a little like sleep walking but he, or rather his brain was confusing night and day which apparently is another possible affectation of the condition.  So I would hear him in the middle of night thinking he needed a shower and then would find him undressed and trying to wash himself though no water was running.  He would try and go downstairs to make a cup of tea - something he had done for years without any issue but at this point he had no concept of how hot things were?

He would get really frustrated with me - never angry or aggressive thankfully - but I worked really hard on my patience levels and would calmly encourage him back into bed.  In the mornings he often had forgotten what had occurred in the night.

Then closer to the last month he struggled so much with walking - he was a tall chap at 6ft 1 and around 15stone by this time due to the increased appetite from the steroids.  So I would have to help him shower, dress and gradually help with other more personal things that he hated having to have help for but realised he needed me there.  He also had sight problems with his right eye as we think the tumour had started to press on his ocular nerve but sometimes his sight would be clear so no definite sight loss.

He then pretty much took to his bed for the last ten days he was still with us - I think he gave up when he realised we couldn't get him out without a wheelchair and his daily walks into Derbyshire were not more.  Speech became less, he became quieter but not fully withdrawn.  I would sit and read to him from the TV teletext or newspapers and he still understood everything but just couldn't find the words to make a sentence - though he never stopped saying I LOVE YOU to me...

We had Macmillan support which we, no I, couldn't have coped without; our GP was brilliant and came to see him twice a week in those last few weeks at home and sadly for us the Community Nursing team were a shambles!

The GP and our Mac nurse thought we were still around 6-8 weeks away of anything significant happening to him as he was still very alert and awake.  Then on the Wed afternoon as I tried to help him back into his bed (now a hospital bed as he couldn't cope with our normal double bed) he slipped off and fell onto the floor. It took three of us to help him back into bed - which broke my heart completely and utterly as I felt I had failed him so badly.

The final day, the next day he was now really quite tired and my sister who is a nurse had been staying over for a few nights to help out as I was really tired by now.  We had stripped the bed again as he had become bladder incontinent during the past week; he ate a lovely breakfast of porridge and blueberries and then a light lunch of a cheese sandwich.

We were checking on him hourly and he slept a fair bit.  My last check was at 3pm when he opened his eyes, smiled at me and then shook his head when I asked if he needed anything.  He then nodded and when I asked what he puckered up his lips for a kiss. I told him I loved him and he nodded 'Me too'..

Just over half an hour later I heard a noise - I can't describe the noise to you but I knew it was him; I bounded upstairs - well, I won't go into details here but at 4.10pm he slipped so peacefully away with me by his side at home.  He looked so peaceful and normal again - he had been so bloated the past few previous days with fluid issues.  But he just looked like he was sleeping.  The GP thinks he possibly had a bleed on the brain which took him so quickly and well before any deep sleep/comatosed state occurred.  Whatever the reason I thank my lucky stars that we didn't have to have him sedated and drugged even though we had some of the end of life drugs in the house ' just in case'....

I know this may read as very personal to those of you that still have your partners, parents, siblings etc here with you but the only way that we can understand what may lie ahead is if we share stories.

I kept a diary all the way through our journey so most of this is still there for me to pull out and well, you never fully forget the passing of someone you love so totally and completely.

I know that our story isn't the 'norm' as BTs go but not everyone does become aggressive, have constant fits, or lose all sense of who they are and who is around them.  But others do - I hope this insight may give you a better understanding of what may lay ahead for you as a family but I will say please don't soldier on alone.

We had time to plan, talk, cry (me of course) and listen to what might happen in our situation.  We chose to have a home death and whilst I wouldn't have it any other way it is blooming hard work caring for the one you love; the one you have relied on for support and understanding and love and is now the one who needs you so very much.  I couldn't have done it without Macmillan, our GP and family - and I know that there are good stories about Community Nursing teams, I cannot tell you just how appalling ours was and whilst I got an unreserved apology afterwards - I didn't get the help when I needed it most.

When I look back now after nearly three years and I know some may find this hard to understand, but I was lucky that for us, and more importantly for my hubby, we had what has been deemed the 'perfect end' to a true gentleman's life.  He was just 51 when he slipped quietly away and I know he would want this story to be shared to give hope, comfort and a little understanding to this terrible condition that robs so many of us of the people we love.

I hope this helps in some small way and I send my heartfelt love to you all who are still on this journey of fear and unknown.  Sorry if it's a long one! x

Itsmywifeiworryabout

Hi Piercey,

I am so sorry that you are in this situation.

I am only a patient rather than a carer so not in the same place. I am surprised that the oncologist has not discussed with you about seizures, memory, speech and so on. Do you have a neurologist who can help? Many of us do have problems with all of the things you mention. Are your dad on any medication? If so it could be that it is helping preventing any seizures.

You should have a Macmillan nurse to help you. They can be very good at getting info from the doctors and they can give you a lot of advice on what to expect in your dad's situation.

R

Littleminica
Posted by

I'm sorry you are going my through this but I feel your pain and understand where you are. I'm right there with you. My husband was diagnosed with a grade 4 glioblastoma February 7, he had a biopsy and a week later due to fluid building up on his brain he had a second surgery to put in a shunt. He's very mobile and impulsive, but has significant cognitive issues, searches for words, doesn't always make sense when he talks, confuses past and present. It's been a month and life turned upside down for us, he has not started chemo and radiation yet, that should be next week. He sometimes is very sleepy and will sleep 12/20 hrs a day but other times he's very alert and chatty. I don't know what to expect or how long he has, I hope he regains more cognitive function but they can't tell me how far he will come back. I was a wreck for a while but have settled down with the help of this community. Take it one day at a time and Be blessed 

Rupert66
Posted by

Hi Littleminica

My hubby lost most of his speech and memory after his op.  Our Speech Therapist got us working on poems - simple ones to start with to help him with speech as rhyming and singing is easier than normal sentences...

We also tripped down memory lane with old photos etc - within three months of his op most of his speech, writing and medium to longer term memories had been unlocked.  Don't give up - try anything!  They will become hopefully happy and cherished times together...

We started with Spike Milligan silly rhymes, followed by Dr Seus and eventually he got right up to the Rhyme of the Ancient Mariner!  Word Searches are brilliant too! Hope this helps x

trudyk
Posted by

I'm so sorry, I lost my dad to a GBM4 very quickly - just a couple of months from diagnosis to losing him -  my response is going to be very honest, I hope that's ok. Make the most of every day now, get all the help you're going to need ready, your local hospice will be a support for you all of you including how to tell your little boy. It's not going to be easy, you won't be able to do it alone. He won't necessarily have seizures, my dad didn't, the end stage symptoms will be different dependant on where the tumour is. You will find it hard to get the right advice or care, you will have to shout for it, it's not right, it shouldn't have to be that way but I found it a good way of getting some control back in a situation that was so out of control. I took time off work, my GP was very supportive and understood that if I didn't take time, it was likely I would make myself ill, it allowed me to just focus on sorting out the practicalities and getting everything we needed. 

We looked at the later stages of being lights going off in the rooms of a house, the loss of mobility, incontinence, loss of speech, sleeping so much more. Just a light going off and we worked with what was left, we didn't care for him at home, we were lucky to have the help of a nursing home and the hospice, being a carer is hard, dad didn't want that for us, and there is nothing to say you have to do it. There are alternatives. Make new memories now, just one day at a time.  Make decisions about treatment or no treatment, as a family we had always discussed this, we were focused on quality of time, not quantity, once the decision was made we didn't have to worry about hospitals, treatment, side effects....we just focused on living each day we still had him. I can say with my hand on my heart we did the right things, having those discussions were so important though, once he couldn't tell me what he wanted, we knew what to do especially right at the end, when we just made sure he was calm, settled, pain free and loved. 
Littleminica
Posted by

Thank you, my husband was an avid reader and loved puzzles, I thought it might frustrate him so I haven't taken books or puzzles to him but I will do that. Hopefully it will stimulant his mind and memory.

Rupert66
Posted by

If it helps as a starter - try reading some simple poetry to him to see what response you might get.  Perhaps some poems from your childhood period?  I know we sometimes had difficulty with certain letters like B or S - almost like a brain stutter...

We both grew up like I said with Spike Milligan poems in the 70s and this one was really good because it has great rhyming and uses all the letters of the alphabet.  It was such a joy to see him master words, phrases and sentences again as I really thought after his op that we would never get 'him back' but we did!

Twas midnight in the schoolroom
And every desk was shut
When suddenly from the alphabet
Was heard a loud "Tut-Tut!"

Said A to B, "I don't like C;
His manners are a lack.
For all I ever see of C
Is a semi-circular back!"

"I disagree," said D to B,
"I've never found C so.
From where I stand he seems to be
An uncompleted O."

C was vexed, "I'm much perplexed,
You criticise my shape.
I'm made like that, to help spell Cat
And Cow and Cool and Cape."

"He's right" said E; said F, "Whoopee!"
Said G, "'Ip, 'Ip, 'ooray!"
"You're dropping me," roared H to G.
"Don't do it please I pray."

"Out of my way," LL said to K.
"I'll make poor I look ILL."
To stop this stunt J stood in front,
And presto! ILL was JILL.

"U know," said V, "that W
Is twice the age of me.
For as a Roman V is five
I'm half as young as he."

X and Y yawned sleepily,
"Look at the time!" they said.
"Let's all get off to beddy byes."
They did, then "Z-z-z."

If he is as tenacious as my old man was - fingers crossed for some positive results! x

TeresaJ
Posted by

Thank you so much for sharing your experience.  My husband was diagnosed last August.  He has significant speech and language problems and memory issues.  We are still having a relatively ok life but I do worry about the future so much and my husband has chosen to deal with his illness by not really acknowledging what is going on.  I have very little support caring for him as my family and main friends live in Ireland and my husband doesn't really want visitors.  It's just good to know about what the end will possibly be like.  You have written so sensitively and of course I am so sorry that you had to go through this but what you have written has helped me.  I have read about the possible end but using statistics and what happens in certain percentages of cases but to read it from a real person's perspective is just so much more meaningful...thank you so much. 

Rupert66
Posted by

Hi there

I have sent you a Friend request.... If you want to discuss anything more privately - or just need an 'ear' to listen then please feel free to contact me via the PM system.

Take Care