Winging it!

Pretty much the same here.Waiting for District palliative nurse to make contact .Up until now he has been accsessing weekly Day services at the local hospice .But isnt up to going anymore .He has secondary brain tumour from oesphageal cancer and has recently had a chest infection and shingles .On second week of antibiotics and  now has a rash over torso .Everytime he stops antibiotics the chest infection returns .He had an episode in Friday where he didn't recognise the flat where we live , and fell over .His disphasia has got worse and he is only eating one small meal a day .Due an m.r.i scan in 3 weeks hope they can bring it forward .He seems a bit better today but it changes from day to day.Good luck with everything the brain tumours are really hard to deal with keep posting lots of hugs x

Thanks Granny Sue, can see you have your hands full there too! Another thing is the constant UTIs, he's up every 1.5hrs in the night for the loo, struggles to walk, needs direction as he is confused. I've called the GP and waiting for a call back, my list of things to cover has doubled in length since I made the call. It took them 6 hours to call back last time and that's with 3 chase calls. Also waiting for the hospice to call, maybe they can help us. Been 2 months now since diagnosis, and it's one thing after another. Take care and hope the nurse calls. Xx

Hi, yes same here really. 

My husband (Spine mets and paralysed from the waist down) recently out of hospital having had urosepsis,  yesterday developed blood in his urine again - he has a catheter - it wasn't a lot, not like before anyway, and he wasn't particulary unwell, but I called 111 - as it was a Sunday - just for advice really.  I encouraged him to drink a bit more than he usually does, and they said we'd be called back within 2 hrs, this was at 2.30pm, we were called at 4.30pm, but only by someone apologising that we hadn't been called by a dr and were told that someone would call later, but I was to phone again if he worsened. 

As he was not showing any other signs of illness I just kept a close eye on him.  We were finally called back at 12.50am!!

Hi Cathjt, how frustrating it is when all we want is answers or some meaningful guidance to help us navigate this nightmare situation. I don't know how people cope if they haven't got someone looking after them, it's really opened my eyes. Last night I watched my dad sleep, rasping breath and really struggling, all I could do was give him nebuliser, paracetamol and a hot water bottle. I know being with him comforts him, but inside I'm bricking it!

I spoke to the GP today, taking up urine sample in the morning, she said how do you know he has UTI, well I know him and how he feels and its defo a UTI. Now won't start any medication for it until it comes back from the lab so poor dad will suffer on top of what's going on. 

I also rang the hospice for some advice don't know who to ask for what, she's going to pop in to see dad on Thurs. At least I feel like I'm doing something, not just watching him depressed and in pain.

Take care xx

 Good for you, hope the hospice visit is useful.I just get the feeling we have to keep pushing and nagging. It's sad but seems the only way. 

The lack of guidance and information is terrible. You just don't know who to contact for advice, particularly out of hours. Tonight he has a temperature of 38 - but given yesterday's response I've not bothered contacting 111. I've given paracetamol and put a fan on - there's no firm sign of infection so I doubt they'd advise anything else, but I just want to know I'm doing the right thing. 

But once again I'll probably sleep on the sofa just in case. And no one can or will say how long this might go on for either. 

Hope your dad gets some treatment for the UTI and you both get some support out of the hospice visit. 

Take care. X