Bowel cancer CARERS, FAMILY & FRIENDS chat

Thank you all for your kind words.

I rushed up today as was told that he had gone into kidney failure and so thought the end was close. Because the kidneys haven’t been functioning properly, the morphine he has been taking has been building up in his body. The effect is a bit like an overdose. I’m fuming as he was discharged from hospital on Wednesday and they hadn’t picked this up. When I looked at his discharge notes from earlier in the week, it also said that he had pneumonia (which he still has).

He has extreme water retention and his legs have ballooned. He has very little strength and is acting very confused - a lot of what he says doesn’t make much sense and he seems to be imagining some things. I’m not sure now how much of this is reversible with antibiotics etc so a bit of a waiting game.

Dad just wants to come home but my Mum wouldn’t be able to help him get in/out of bed, to the toilet etc so think we need to see if his strength improves and what kind of palliative care is available (if returning home is even an option).

I feel exhausted but my poor Mum looks worse. Even by the standards of the past 2 years, today has been a bit of a crazy rollercoaster. Trying to focus on the positives (MRI scan indicates no further encroachment into his spinal column) but we know that, even if they can treat his current issues, things will just continue to deteriorate.

Matt that is so sad. He should be babble to go home with a package but what do I know.  I hope you spoke to the consultant as us wives do not take everything in and need an extra ear to listen and explain.  He should not be going home without some sort of care package in place.  If they have discharged your dad that is scandalous.  How do they expect your mum to do everything.  I really hope you get this sorted I am not sure if he has gone back in or still discharged, apologies as I am confused. Please let us know how you and all are doing xx

He went into hospital on Monday, was discharged on Wednesday, then was taken back in to hospital on Thursday. He really shouldn’t have been discharged on Wednesday. When they discharged him, my Mum was just left to take him home and try to get him into the house. There’s a small step to get in through the front door and she struggled so much trying to help him in. He wants to come home again but he’s still incredibly poorly and, if he does improve, you’re right that they’re going to need a care package in place before he can come home.

Matt make sure there is a good care package in place and see if you can talk to someone in charge before they even consider taking him home and an ambulance should be arranged.  You will need all the equipment as well.  Please talk to someone in charge and if need be make a fuss. I am thinking of you xx

Hi MGSH My dad was recently in hospital after a fall and even with a care package in place at home it’s been a struggle for my mum. I just wanted to add that a water infection is very common and causes confusion - my mum had to ask them to do one and then remind them again a couple of days later so that’s worth asking for.

Take care

Karen x

Morning having to wait for a ambulance for Simon 4 hours so far he woke up couldn't stand was really dizzy had to lay down but still dizzy he has been complaining of a ache pelvic area but today a tightness along chest and dizzy when standing just couldn't understand what it is layed in bed dizzy even to lay rang 111 wish I had called a ambulance 111 says we are really busy so here waiting he is no worst so just running up and down stair check on him PLEASE just give us a break he has been through enough will let you know sorry MGSH I can relate to your mum it is really hard work for us to watch and try and care for our love ones it is cruel and long love to you all xx

Jkee I can’t believe this is happening again. 4 hours is ridiculous as some don’t even need one. I hope Simon gets sorted. You should have rang 999.  Please keep us updated and I am thinking of you and Simon. I will reply when I hear.  Is there anyone who can drive him to hospital xx

Hi Maggie big mistake not ringing 999 but think they still would have classed him as category 3 just phoned chasing they say really busy been waiting 6 hours he can't stand the hospital is 1 hour away do not want to sit in a&e. While I am able to keep looking after him he is better with me it's weekend AGAIN every time he needs bloods taken this is traumatic can't do this anymore he just said I have had enough can't blame him it is so unfair he got through again surgery all good the wham something else will let you know long night ahead x

Sorry to hear this Matt! 

I can just imagine what you will be going through. All Jay wanted to do was come home to pass here but in the end he was too weak to be moved so just had to bide his time at the hospital. He too had kidney problems at the end and had to have a double nephrostomy to help his kidneys drain properly but that was the chemotherapy that caused that. My heart goes out to you. and yes you are right as we all say here it is a rollercoaster and for some of us it doesn't seem to want to stop. Take Care. 

Vicky x

Oh Jkee! That is a disgrace!! Surely they should have put that through as urgent. I had the same carry on with Jay he went into sepsis again at the end and I was frantic and was never off the phone trying to get and ambulance think too they said they were very busy and I don't even think any emergency crews were in our area either. Oh dear just when you thought things were on the up but had a few of those times myself. Hope they get to you soon. Take Care. 

Vicky xx