Husbands glioblastoma

HI Llamalover

you are definitely not alone. There's a few of us here going through the same  or a similar journey. 

My fitness freak 51year old husband was diagnosed with a GBM4 last September. His only symptom was a difficulty with words and conversation. The initial sign was a "funny turn" while out running when he realised he didn't know the words for pavement and cars and couldn't form any words. Did he stop his run and come home? Eh no! He ran several more miles trying to restore his speech and reading by looking at the name badges on the parked cars. A month later he was given the GBM4 diagnosis  and two weeks after that, following surgery to debulk the tumour, was given 12-15 months to live.

He went through 6 weeks of oral chemo and radiation which to his mind didn't make him any better. He's since declined further treatment. He developed blood clots in his lungs a few weeks after surgery and we found out recently that they have shortened the time he has left. Just two weeks ago we were told there's a small non- blocking clot in his brain potentially affecting two of the major veins..... the good news just keeps coming....sigh...

Physically he's still in good shape, still running but mentally he's declining. His short term memory is shot. His speech gets confused especially when he's tired and his reading ability is all but gone. He can only follow simple instructions. Its been so scary seeing how quickly things changed.

I totally agree with you though- all we can do is our best. I am led by what he wants but I do make a point of taking time for myself. He doesn't understand that this is having an emotional impact on me and our kids (23 and 21). To him, this is all about him. 

So read those books, go for those walks, listen to music, watch tv, whatever it takes to recharge your own batteries. All the emotions are natural and showing emotion is a sign of strength and resilience.

Hang in there.  

love n hugs

Wee Me xx

ps  guess I wittered a bit too LOL 

Hi Wee me

Thank you for your lovely reply.

My husband is, I have to say pretty good at thinking of my needs most of the time. He hates the fact he can do very little without worrying he’ll fall over, which he has done a few times in the house, even when using his walking frame. However when this happened he wouldn’t let me get any help to lift him. I know he feels embarrassed and frustrated but it’s difficult to help him. I have been told by many people both friends and professionals to get help, whatever he says. 

I realise that at 69 my husband is much older than yours so think it’s really difficult for you and your children to come to terms with. What upsets us both is the fact that our grandchildren (3 yr old and few weeks old) won’t remember him and he won’t see them grow up.

We just have to carry on as best we can as you say. At the moment he seems quite stable, he is also on Keppra because he had a couple of mild seizures. I would never have believed we’d be in this position this time last year. Lockdown then seems like a breeze compared to this dreadful illness.

Keep going and keep well,

love to you all.

Hi, I've just joined the group as my sister (39 Yr old) is going through exactly the same thing so I understand the heart break it causes. She's usually super fit, out running all the time and it's absolutely heart break g to watch. Unfortunately she's mostly non responsive at the minute, spending most of her time asleep and we're at the point where she is no longer opening her mouth to take in water and really struggles to swallow when she does.

I don't suppose anybody in the group has come across any way to help hydrate her, it's really desperate now. 

Hi Gary,

So very sorry to hear about your sister. She is so young to have this dreadful disease.

I can only think that the nurses (whether at home or in the hospital) might give her intravenous liquids. If anyone else is better informed, please post a reply. 

Best wishes,

Llamalover

Hi  Gary

so sorry to hear about your sister. So young....

I agree with Llamalover- a nurse or perhaps your local hospice team would be best placed to advise on hydration. You can always Ask An Expert/Nurse on here.

My husband has lost his sense of thirst over the past few weeks and never feel thirsty. Dangerous when he's still running but I'm doing my best to ensure he drinks plenty of fluids. 

Stay strong. 

Love n hugs

Wee Me  x

Hi, I have been reading some of the posts here and what is so very clear is that the progress of this horrible disease is so completely individual. Our story is really tricky. My lovely husband died eighteen months ago really quickly after diagnosis. He had come home from work saying that he was having trouble seeing, he couldn’t quite focus on things. He hadn’t had new glasses for a while so I suggested h3 had his eyes tested. The optician found it. He was sent directly to the hospital to the eye specialist that day, then an emergency MRI the next, consultant two days later. By this time, and in between all this, the GP said gliobastoma, wild type grade4. I am an ex nurse so knew. John deteriorated very quickly, he had the very large tumour debunked the following week, but was by then confused and had great weakness in the left side. 
He came home Christmas Eve. Two days after Christmas he could no longer stand, hold a cup, remember who I was or where he was and had a whole host of other symptoms. However his innate niceness shone through and he didn’t complain or seem upset at how he was feeling. He had radio, but could not tolerate chemo, he developed a large embolis on his right lung. He had no understanding of time or place and would imagine that he was in all sorts of places, all good, often going on holiday. 
I cannot praise more highly the care given by our GP, the hospice carers and the provision to look after him at home until the end of his life by the NHS. If there is any advise I can give, take all the help you can there is plenty out there. The NHS, through CHP applied for via the district nurses in our area, provided a carer all day, plus one other four times a day and three nights a week over night care. We had a hospital bed, hoist etc delivered which made it possible for him to stay at home with us. My friends, and especially my sister, who travelled over 80 miles a week to help out, were amazing.

During the whole journey the consultants were upfront and clear. They explained his disease clearly and left no doubt about prognosis. Trust them, if they are giving good news grasp it and hold on tight, they make best guesses but will say it as they see it. Our lovely GP would often just pop in to see how we were.

the hospice offered me lots of support, including someone to talk to if I needed it. I didn’t take them up on that preferring to vent a bit here. The emotion are so big it is impossible to describe, but each day I step right on into the rest of my life, which in a moment of lucidity John had told me he wanted me to do. Missing John so terribly after more than 40 years together. So in essence everyone is different, it depends on where and how large the tumour is, how much can be removed, if chemo can be tolerated and what kind of tumour it is. Don’t be afraid of having really difficult conversations they help in the long run but are heart wrenching at the time.

anyway snotty nosed, red eyed and with salty tracks down my face, be kind to yourself.

granniefrannie

Hi granniefrannie

A lot of what you've said is very similar to the symptoms my sister has shown.

Unfortunately she passed away 3 days ago and I've never felt pain like it. We're absolutely devastated.

She deteriated so fast, couldn't eat or drink. We managed to get her a home IV for fluids but because of the lack of food she couldn't go on.

We're consoling ourselves with the fact that she no longer suffers and fortunately we have a close family so we can support each other.

Really hard times still ahead and yesterday I registered my own sisters passing and it's ruined me.

All I can suggest for anyone going through this is to keep their loved ones close and try to support each other.

Gary

Hi Gary,

 I am so sorry to hear about your lovely sister. I had read your posts from earlier and felt sad for a life shortened. There are no words, just know that even though you feel as though you are castaway in a rough sea in a very small dinghy, soon you will begin to remember the lovely things about her. She is at peace now and she will live forever in your heart. It takes time to begin to recover, if you ever do, from the trauma of seeing your loved one being so sick. 

you know that your sister wants you to keep moving forward and living your best life. Do it for her. find the courage and if there are times, and there will be, when you are in that boat again be kind to yourself until the sea calms a bit and you spy land.

all my heartfelt love and prayers are with you and your family.

Granniefrannie

Hi granniefrannie,

I'm sorry to read about the illness and loss of your husband. It seems as if it was quite quick, which whilst being dreadful to deal with, must have seemed like a blessing in the end. I hate the fact that it takes the whole being of a person away, one way or another. My husband seems to be slowly but surely losing any use of his right leg and has more weakness in his right arm too. This means that he cant get in and out of an ordinary car very easily, without lots of help and that wears him out. He does have a mobility scooter and we manage to go for walks together in the local neighbourhood, which is something.

He had another fall in the shower last week and really thought that he would need personal care. However he seems to have gained a bit of strength again and is just having washes instead. Not ideal but better than nothing. We have a bath bar fitted now and hope to be able to use the shower in there. Its just all the things like that, which are so demoralising for him. 

We have been visited by the Macmillan nurse today. She is wonderful, so helpful in every respect. I would agree that getting the right support from everyone is really helpful. The NHS,  family, friends and neighbours have all been so good.

At times like this, when my husband is having a 'good' day, I feel he can go on forever. I know this isn't the case and that he could deteriorate quite quickly from what I have read on various posts and so on. We just take each day as it comes, as there is no choice, but I still feel that we are living someone else's life and we will wake up from this nightmare one day.

I wish you all the very best and take care of yourself,

Llamalover  xx

Hi GaryS2,

So sorry to hear about your beloved sister. It has to be so difficult to lose someone at such a young age.

My thoughts are with you,

Llamalover xx