We Talk Brain Tumours

Hello,

just as a disclaimer... I don't think I've ever posted anything in any forum ever in my life so pardon any lack of ettiquete. I'm also very fresh to this... was only told about it yesterday. It's apparently a left sided glicoma. According to the doctor it's benign... though apparently that's not as pleasant and peaceful as I had always assumed it meant. 

When I was told about it I took it the same way I take most news... meh, it'll be fine. At the time I was quite upset by the fact that he said I'd have to stop driving which means selling my motorbike which I love. I guess it wasn't until a google search and a few hours later that I realised this isn't just a stable state. I didn't even think to ask the consultant about what it meant for life etc. 

So that's the big question I have... morbid and all... does anyone know or have any experiences with whether these things do either go away, respond to treatment or stay stable enough that you live more or less a normal existence. Or am I basically looking at a guess of duration?

Hi eug,

Yes, you're in the right place here and we'll do what we can to help you through this journey.

First of all, you need to confirm your diagnosis as a glicoma isn't a valid term.  If it's a glioblastoma, then it's definitely not benign and is a very serious condition (as are any brain tumours).  There are also gliomas.  Some of them are very serious and some are survivable for a good period of time.

Understandably, this is a huge amount to take on board and it c an be difficult to understand what's going on from a first meeting.  I'd strongly suggest that you have a follow-up meeting to go through things again and make sure that you understand everything.  Cheifly, you need to know what the diagnosis is, and what treatment place has been offered.  If you found things hard to follow, then take someone with you.  Don't ever be afraid of asking question.

Also don't be afraid of asking questions here as well, we'll do out best to give you the best support and advice that we can.

Not been around for a couple of days - welcome to new members, you will find all the help and support you need here.

Dad still in the hospice, despite them saying he would have to leave yesterday as he was only in for a week's respite. He continues to decline at a rather alarming rate. I hate to have to ask this as I worry about being disrespectful of dad's dignity but does anyone on here know anything about constipation at the end stages? And what it means? Dad hasn't opened his bowels for ten days now. Today he had two suppositiories but still nothing. I keep telling myself it is immobility but that voice I don't want to listen to tells me it is probably his body slowing/shutting down. I don't know.

After a weekend of continually trying to stand up and falling over he now sits on a sensor pad so as soon as his bum leaves that pad, an alarm goes off and three people rush in and re-seat him. He can now only drink through a straw and only if someone holds his beaker for him.

He doesn't know who I am but he always seems pleased to see me and sits and holds my hands.

After trippling his steroids last week he has now gone back to the original dose after the higher dose made him agitated and distressed. Each night he has an injection in to his thigh of some kind of sleeping medication

And still he asks me to take him home ....

Have no idea what the plan is or where he will be moved to but we are hoping we will find out on Thursday.

Love to all,

Naomi.xx

Hi Eug--

or maybe its a glioma as in oligodendroglioma? If it's a grade 1 or 2 the docs do sometimes say benign, but like Pete says you need more info as most brain tumours are serious due to the position, and what they can damage. Unlike other tumours in other parts of the body, they cant just go in and remove it plus a load of healthy tissue around it to be on the safe side as it's your brain. Brain tumours go from a grade 1 up to a very serious grade 4.. So sorry you had to join this site but you are in good hands and will get support and information. My 25 year old daughter has an oligodendroglioma and her diagnosis was January this year. It's certainly life changing! And too bad about the motorbike!

Best wishes, Sue XX

Hi Naomi- I give my daughter Magnesium Sulphate capsules at night before bed-- 2 if it's not bad and 4 if she hasn't been for a couple of days. But you're right, it's the lack of mobility, so is there any possibility at all that someone can help him move around even for a bit, especially since he tries to get up all the time? Maybe with the help of a zimmer frame or similar? If the body doesn't get much movement then it's hard for the digestive system to work properly. 10 days is such a long time not to go.

Best wishes to all, Sue XX

Hi to new and old,

Naomi, your dad sounds almost at the same stage as G now.  Surely they will keep him at the hospice.

We are almost two weeks on since they told us the fight was almost over but still he battles on and the only word he now says is 'sorry' I really don't know how he carries on but he is certainly a fighter and he does not appear to be in any physical pain but the emotional torment is written all over our dear Gs face. I'm finding it hard to post at the moment but please know that I read when I can and that my heart goes out to you all.

Ange x

Sue - thank you for your help. He tries to get up but the reality is his legs have withered away to almost nothing and haven't been able to support him even in standing momentarily for a couple of weeks now. He also seems to have lost the use of his arms so he can't support himself on a frame. It is like he is trapped in his own body, he wants to move (and his bottom gets really numb and uncomfortable) but he just isn't able to and immediately falls to the ground.

Kerry - thank you, especially at such a difficult time for yourself. I don't know where he will go. Mum swings between thinking she can cope with him at home and being terrified of him being at home. I don't think she could cope. It takes at least two, and usually three, nurses to move him on to the commode. His legs can't support him in a wheelchair anymore and he slumps to one side (seems unable to support his head much either). We are constantly told by them that it isn't a long term option and yet there are people in there who have been there six weeks but seem more well than dad. I think he is a lot of work for them and, lovely as they all are, I don't think their expertise is in that of patients with dementia-like symptoms.

I hate going to see him cos I get so distressed yet I hate leaving him there and when I'm away from him I miss him terribly. I used to go in every day but now I go in every other day. I feel I should be making the most of him but I'm not strong enough.

Such a mess.xxx

Just wanted to send an huge hug and love to all new and old.

Naomi, if dad isnt uncomfortable with his bowles then its likely he hasnt got anything there to void, I dont suppose he is eating much and is mainly taking fluids.  The staff should be monitoring and watching him.  As for them saying he can only stay a short time this is common, hospice usually allocate a bed for 1-2 weeks but they will not discharge him until they are sure he is going somewhere where he will be cared for better than they can do it.

take care everyone and have a peaceful day xxx

Hi Pete,

sorry about that, for some reason had glycomas in my head (or however you spell it). I've got the referral letter to the GP which says:

Left sided glioma. Sensory simph partial seizures R arm

The seizures thing is how it all began. Though they were no more than pins and needles in the arm, didn't cause numbness or anything like that. 

I've been trying to call the consultant I spoke with but seems impossible to get through. Tonight I'm going to the GP and will have a follow up hospital appointment in 3 weeks. 

Judging by a few of the responses, is it safe to assume that this is the kind of diagnosis that should be measured in months? 

I know it sounds morbid, but in theory I'm meant to be away next week doing a masters program which seems fairly pointless and a waste of money if the diagnosis doesnt even go up to graduation. On top of that my wife is due to give birth to our second child in about 6 weeks so I need to know what I can do to plan for everyone being ok. 

Eug,

I think you should wait and speak to your consultant before making any decisions. You are being incredibly brave and selfless but I would imagine it is impossible to think rationally at this present time, especially wtih a new baby so close. I cannot begin to imagine how you are coping with all of this, and your wife too.

We will all be here to help you when you need us.

Naomi.x