Hi everyone
my husband was diagnosed last august Glioblastoma G4. We have had all the emotional distress, the what where’s why’s etc,
He had 3 weeks radiotherapy and oral trial drugs.in November and I must say he felt well directly after the treatment but 3 months on he’s showing more signs of left sided weakness in his left arm & leg.
oncology Dr increased his dex to 8 mg daily yesterday
The toileting … wee wee is unbelievable, he and me as his carer are both exhausted by the amount of times he needs to go in a 24 hr day. It’s almost every 15-20mins. he wears pads to help soak up some spillage and to be honest apart from the leg & arm weakness we can really go out because of the toileting.
Can Someone give any advise here ?
thanks in advance
x
Hi there, welcome to the group. So this is a coincidence because just yesterday we talked to my wife's oncologist about this. She has to go at least every hour and before we go out need to make sure she's been and that there are toilets. We got caught short last week on a coast path walk which was interesting....
The oncologist said it's not uncommon with brain tumours and also happens with other conditions that cause brain injury like stroke.
He said the GP may prescribe a drug called duloxeteine which is also an antidepressant.
I'll post back here once we've spoken to the GP tomorrow and let you know how we get on.
Take care,
Chris
HI Icare4you
a warm welcome to the group. So sorry to hear about all you and your husband are going through.
I'm supporting my husband through his GBM4 journey. He was first diagnosed in Sept 2020 and I know that incontinence is something he worries about. We've not reached that stage but I can empathise with the whole situation.
I assume that someone has checked that your husband doesn't have an infection that contributing to this?
Stress/anxiety may also be a contributing factor. I have IBS and if I get stressed or anxious I could wee for Scotland! It ends up a vicious circle that needs to be broken...easier said than done.
I'd raise your concerns with your husband's medical team and see if there is something they can prescribe to assist here.
You can also reach out to Ask an Expert via the online community or you can reach out through the help line. The number is below.
These GBM4 tumours really are the gift that just keeps giving. Please make sure you are taking time to care for yourself here too. This is an exhausting journey for you too so please make sure you're keeping your own wee batteries charged.
Sending you love and light and hugs. Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Just an update on this. We spoke with the GP but they want to review new blood tests (oh joy!) and a urine sample (shouldn't be difficult 
). They also want my wife to see another GP who has a specialism in neurology. The GP did say that if she ever needs to go but can't repeatedly that could be very serious and to seek emergency treatment.
In the meantime if you haven't already it's worth trying different incontinence products. We tried several types of pads but she finds the Tena ones much more comfortable (I'm not on commission). She also uses metanium which we used to give the kids for nappy rash and I never thought I'd be buying again. This whole aspect is just so cruel, like having terminal cancer isn't bad enough.
I'll post back when we get to see the other GP in 10 days.
Thank you Branoc.
we are using pads by the bag load as there’s so much spillage before and after trying to pass wee.
my husband has lost the use of his left side now and mobility to the bathroom is not an option for us.
He wants to continue to wee standing up but he’s at risk of falling as he’s got difficulty standing he now got poor balance. So …. We try to pass most of it into a bottle with him standing up and the inevitable spillage or after drips go into the pads. Although sometimes we don’t make the bottle and it’s game over , start all over again.
Your right it’s bad enough seeing our loved ones fighting this dreadful debilitating disease with out all the other obstacles thrown at us.
i think I’ll stick to the current pads we are using (not tenna ladies) as they are provided for us.
My husband had an assessment carried out by the incontinence clinic and was supported by our district nurse, we get the pads delivered to him every month now. At least it reduces the laundry a little.
hope your wife gets some help also.
Btw , The district nurse is calling today to advise on a catheter as we are both so tired with the wee wee demands.
Keep posting & thanks 
Hi Pete
thank you for your experiences.
since writing my initial message things have gone down quite a lot for my husband.he now has to take all his care from the hospital bed which has been provided.
he can no longer stand or maintain balance as he is falling to the left side even trying to sit.
OT brought commode but transfering from bed - to commode for one carer me) is certainly not possible and such a risk for us both.
Over the weekend DN tried to situ a catheter unsuccessfully and has caused a lot of discomfort and bleeding for him. i am using pads now and he is receiving community assistance with carers to keep him clean and ensuring pressure monitoring with slide sheets morning and evening but will be Increasing asap when the CHC assessment is done, which i hope will be soon.
My goodness it’s so difficult seeing him in a hospital bed 24/7.
I'm feeding him and giving all meds from the bed now.
it’s so heartbreaking.
where has my man gone. 
Keeping positive - T️
It sounds like this might not be so useful to you now but I promised I'd post back here once we'd spoken to the GP about my wife's need to pee every 30 minutes. The GP has prescribed a drug called mirabegron which helps relax the bladder allowing it to fill more before the need to pee. For anyone else who might be reading this it's worth saying that this is for urge incontinence (needing to go a lot) as opposed to stress incontinence which is where you spring a leak when sneezing, laughing etc..
My wife only started taking it today so I'll post back here again in a week to let you know whether it's effective.
Take care all,
Chris
