Brain tumours

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

Last Stages GBM4

SunnyT
Posted by

Hi,

My fiance is now on Avastin. First in fusion last week.his tumour has progressed to the brain stem so he cannot walk, and has right side paralysis. Has been bedridden. And incontinent for a few weeks

He is having trouble swallowing sometimes but still drinks

I remain hopeful Avastin may shrink the tumour a bit so he can start moving again

Then, we want to try immunotherapy.

Am I being unrealistic to still be hopeful? I know realistically things are not looking good but he is also recovering from a grand mal and a terrible cold. There is a possibility of miracle and as the body slowly heals, he may get better?

He is only 42.




BrianR1948
Posted by

Hello Sunny T

I am so sorry to learn about your fiancé. This makes hard reading. Let us all hope the present treatment helps. Now is the time to draw on your complete faith in his survival and pull in every ounce of belief you have.


I wish you well through this. My thoughts are with you


Brian

SunnyT
Posted by

Thank you, Brian. Wishing you continued success in health too.

I still have faith he will be fine. Being hopeful is not being unrealistic. It is choosing to stay with love. It is not over until it is over. Plus, our spirit s live on forever. Make it a good one! 


I plan to start an NGO, a foundation in his name in the future to meet gaps in needs for GBM and other brain tumour patients. 

BrianR1948
Posted by

Hello Sunny T

You may find the post under the heading “Radio 4 interview “ of interest. I have evidence, at least as strongly as you can get, that the spirit does continue, as you hope,  and not just wishful thinking but actual real life experience.


I wish you continuing strength to carry you forward. I am here to support throughout 


Best wishes


Brian

Gails
Posted by

My Husbands GMB progressed to the Brain Stem and this caused problems swallowing, he was not able to swallow food or liquids.  It had already travelled down his spine and therefore he could not walk either. 

It is so cruel to see them go downhill like this.

Gail x

BrianR1948
Posted by

Hello Gail

This must be so hard for you. The thoughts of everyone here will be with you. I am sure his clinicians are helping by keeping him medicated and comfortable 


Best wishes and thoughts throughout


Brian x

PaulMc
Posted by

My brother is 39. He was diagnosed with an inoperable brain tumour about 10 years ago. He had a biopsy, one treatment of radiation and then chemotherapy on and off since but in October his doctor told us there was nothing more he could do for my brother.

D has gone downhill quite rapidly since. He has little strength in his right side, is blind in his right eye, struggles to communicate. He sometimes doesn't make it to the toilet in time. His mobility is quite restricted and he has started falling now too. I don't know if he's strictly in the last stages, but he's heading that way.

However, although he can't talk much, he's still (usually) the friendly lad he always was. The frustration he must sometimes feel rarely shows and when it does it is minor and short-lived.

He's still at home, but I don't know how long that will continue (and that's one reason for my post). He lives with my mum, who is 80. She is amazing, but caring for him is wearing her out (I do what I can but I'm 50 miles away, work full time and have a young family of my own). Mum is afraid of sleeping when he's out of bed (in case he falls or has a seizure), and he keeps terrible hours, often up until 2am. His last 2 falls (both within the last week) happened late at night. He's twice the size of her and there's no way she could lift him. She rang the ambulance each time because there was no one else she could ask for help. On both occasions he eventually managed to crawl to bed. It took him more than an hour each time but he still managed to get into bed before an ambulance could get to him, so mum cancelled them each time.

I don't think he really needed an ambulance. Thankfully, he hasn't hurt himself seriously during any of his falls. It's just that he struggles to get up.

The local hospice is in touch. I've heard that (if he does go to the hospice) it will probably only be at or near the very end. A carer visits for an hour each morning to help my brother shower and dress. 

I'm trying not to focus too much on how much time he has left, but I'm wondering what comes next, and when, and how long for - more for mum's sake than anything. I'm also wondering when she'll get more help to care for D. 

What will happen? Will someone suggest that D goes into local authority care, or will they look to keep him at home for as long as possible? Is there more help available? Or do we have to deal with this ourselves? I'm going to take some time off work and just stay with them both to give mum a break, but I can't do that for more than a few days.

I'm sorry that this is a bit rambling, but it's only when you start to write it down that you realise how much there is to say.

With respect to all here, I'm not looking for responses about treatment or hope. I want to hear others' experiences of the practicalities of the later stages of terminal brain cancer.

Thanks in advance,

Paul.

Novembergirl
Posted by

You and your mum sound like amazing people, and your brother too. It sounds like things are getting to the point where your mum needs more help, and maybe some plans in place if she can't manage. But if she and your brother would like home based care, I would hope you could get the help needed to make this possible. 

My husband was at home for the last six weeks of his life, and we got a lot of help under the NHS community healthcare arrangements. This was sorted out while he was in hospital. It included an assessment for equipment (eg. hospital bed), and carer visits three times a day for washing, getting dressed, toileting etc. Macmillan nurses and our local district nurses did all the medical stuff such as setting up a syringe driver and prescribing all drugs needed. We also had occasional GP visits.

It worked well on the whole but it was still very challenging because ultimately you are the hub for everything, doing all the liaison, cooking, feeding, entertaining and caring when the carers are not there, managing drugs and so on. If you can be properly supported though there's nothing more important or rewarding, but 'properly' is really important because no-one should feel out of their depth in a situation like this. Coming to the end of your life at home, surrounded by the people who love you best, is a great goal to set but only if it's properly managed. If this isn't feasible, a care home might be safer and preferable. Whatever you choose, your brother will need an assessment. A GP or Macmillan nurse should be able to start the ball rolling to get everything arranged, and there is a 'fast track' if the person has a short life expectancy. 

I 'spent' some of my allocated hours on a night carer because rest was so essential if I was to function and support my husband during the day, and later I also got a Marie Curie nurse for occasional nights which was very good because they are medically qualified and you can really relax knowing someone professional and knowledgeable is looking out for the person you love.

Having said all this there's no shame in deciding that it's too much. I am 30 years younger than your mum and still needed all the help I could get. A hospice or care home can provide a safe environment and breathing space so that you can focus on being together rather than worrying about practical stuff. You can also use a hospice to get stabilised and then come home again after.

As I'm sure you know, things can change rapidly so do press for an assessment asap. Good luck

PaulMc
Posted by

Thanks NG. I'll push for an assessment and try to be there when it happens:  I'm worried that my mum tries to cope too much and downplays the amount of help she needs.

What (please) are allocated hours? NHS, LA or something else?

Novembergirl
Posted by

It's the number of hours the NHS is prepared to fund per week, depending on your needs. Of course these fluctuate so I guess you can ask for the arrangements to be reassessed as you go. In our case we needed a lot from the start because my husband was unable to move and was completely dependent on us for all personal care, feeding and so on. I hasten to say this doesn't happen to everyone, it's because of where his tumour was.  

Gails
Posted by

Hello Brian, I am sorry but I didn't make it clear when I posted my message.  I was referring to how Rick was towards the end, he passed away in February 2016 after an 8 month battle where 2 of these were spent in hospital. 

I thank you anyway for your kind words

Gall

NeelG
Posted by

Hii dear ...how r u 

l know you miss u father..m also in same situation..it very tuff to see him...he wants to talk everyone...but he can't speak and keeps rising hand in air....after see all ...I just cry ...m helpless...why I do for himmm...

Thanks