We Talk Brain Tumours

Hi Laura,

Sorry, I don't know whether disobedient catheters are normal or not, but if your father is suffering harsh pain, then I'd be tempted to give the out of hours doctor a call and see if you can get any help.  Paracetamol seems a little lightweight for what you're describing.

Hi Laura, 

Having had a twisted catheter whilst in hospital I know just how much pain your dad is in and my feeling is that paracetamol just won't hit the spot.  Also, if there is an infection of some sort I would have thought paracetamol would disguise a temperature if he has one.  Having been far too patient in the past with waiting for the NHS protocol to kick in, I would be inclined to go to A&E, either by car or ambulance if that's what it takes.  Weekends aren't great in A&E so best get in before if you can.  Hope it gets sorted very soon, and wish your dad well for the rest of his treatment. Jenx

Hi Laura

If the balloon on the catheter is deflating then the catheter is likely to fall out, the balloon is what holds it in the bladder.  It sounds as though the drainage holes in the section of the catheter in the bladder may be blocked especially if dad has an infection.  The DN should be able to do a wash out and see if this helps.  If the holes are blocked you will notice he isn't passing much urine and you may be able to feel his bladder if you touch around the pubic bone.  I would be inclined to call the out of hours doctor.

Debs - hope you heard exactly what you wanted to do today, have been thinking about you

Love to all xx

Joanna

Hi lauraloo

The catheter thing sounds awful and I agree with everyone, paracetamol is not good enough. I'd get onto the out of hours doc and get it sorted. I used to feel guilty calling a GP to do a home visit to be honest and I would leave it as the last resort usually especially as they always make such a song and dance about it but now I'm on that phone at the slightest twitch. I've lost all sensitivity about it. Tony is my priiority and sod their song and dance. If they do a song and dance I do an even bigger one right back!

I don't know how much pain is involved but I do know that even the merest mention of pain in the general region of a man's dangly bits sends most men into a cold sweat. Poor thing.

Good luck with it all. Let us know how you get on.

Pam

x

Pam's right.

I'm in a cold sweat.

Thanks, Pam...!

Hi Lauralou, I don't post often because my husband is defying all expectations and doing so well that I don't feel I have a great deal to offer my fellow passengers - but I have to confess to being a very regular 'stalker' ! He has a brain stem tumour of unknown histology - couldn't biopsy it because of where it is - was given 5 to 11 months but 3 and 1/4 years later he's still here and has actually improved on Temozolomide. He holds the record at our oncology unit of 24 cycles of chemo - albeit they have been stretched our from 4 weekly to 6 weekly and now 8 weekly. Thinking about your Dads catheter,has anyone checked your dads bowel? Apparently one of the most common causes of catheters failing in immobile patients is due to a full bowel pushing the balloon out- have been told this by several of our Marie Curie nurses. Just a thought , hope your Dad is more comfortable very soon.

Warmest wishes to everyone

Rosskin -

Rosskin, it's always good to hear a good outcome like yours.  Proof that timescales have no meaning.  Long may it last.

We have a few inches of snow here, but I'm old and ugly enough to want to stay indoors.

Wishing all a peaceful weekend.

Hi Rosskin

I've just read your post - I don't agree! I think you have a very great deal to offer to fellow passengers. Although obviously I can only talk personally but, for a very very long time, the only thing my husband had was hope. He clung to it like a lifeboat and it fed his positive outlook, when everything else had abandoned him. His oncologist, his GP, his carers, his nurses, everyone in fact agreed that your psychological state can have as much effect on the disease as any drug. He held on to every tiny grain of hope he could even when the voices in his head were screaming that it was all pointless. So other people's stories of survival and success were so important, they were the small percentage that bucked the trend and it was like finding water in the desert! 

There is a generosity of spirit on this forum that you don't get to see in many places. There is an equal amount of love and joy for good news as there is love and empathy for bad. We are all fighting the same thing - this b@st@rd cancer.

Here's to defying all expectations! Your story made me smile, as it will many others. So keep on sharing!

Pam

x

Hi Pam , Hi Pete

Thanks for that, It's hard to explain but I sometimes feel guilty that we're in a more fortunate situation than so many other with this godawful disease and at the same scared s**tless that all this is yet to come.

My husband always had a quiet determination bordering upon being 'thron' -scottish colloquism for stubborn!Throughout his illness he has never asked why or felt sorry for himself and has accepted what's happened but refused to allow it to take him without a fight-and what a fight he's had! Our story is remarkable in that no one expected his tumour to be so chemo sensitive but it took 24 months to stabilise the massive seizures that put him on the edge of life every time. We nearly lost him 4 times due to the seizure activity  and all the complications they brought-I've lost count of the times I've said to the medics 'of course we want him resucitated, he's not ready to give in yet, don't let him die here I've promised him that he'll be at home '

So, to cut a long story short he's gone from being a shambling wreck of a man who at times didn't know where he was ,couldn't toilet himself, could barely walk ,needed help with just about every aspect of his life to someone that plays scrabble and numerous other brain training games and goes to a private physio on a regular basis.It's been a battle but we now have good support from our DN team ,GP,local Palliative Care Unit and Psychologist for me! I suspect NHS resources are slightly better here in Scotland than in parts of England so in that resect we're also lucky.

My heart goes out to everyone that is suffering from this dreadful disease that slowly robs the person of who and what they are, my husband is remarkable but that has to be tempered by the observation 'for a man with a brain tumour' He's a faded and depleted version of the acutely intelligent and witty man that he was pre tumour.Our daughters are slowly losing their Dad and at times I feel less than his wife and more of a carer. But then I guess everyone on this forum will identify with that.He is however ,'still in the game' and long may that continue- his sheer gritty determination to see his daughters graduate from Uni may yet come to pass!

Crikey- better shut up now ! Not sure why all that came tumbling out but hopefully knowing that sometimes the treatment does work for a long time will help others have hope. We know it's unusual but it does happen occasionally. There's still so much that's not known about brain tumours that hope and belief and determination must play a part-attitude alone clearly can't stop the disease process but i think it can help you live with the tumour for as long as you can rather than live your life dying with it if that makes sense?Debs is someone who comes to mind - another remarkable lady!

Warmest thoughts to all who are struggling - Rosskin

Dear Rosskin. Keep posting. Hope is what enables everyone on this Forum to keep going from one day to the next. Your husband and Debs are the "can do" people that fly in the face of the statistics that kick us all when we are down. Good news is hard to find in the BT community so never feel that we will not wish to hear it. 

Love to everyone this morning.

Cathi x