Bowel cancer CARERS, FAMILY & FRIENDS chat

Hi Maggie. I’m glad Les’ operation went ahead. How is he today? My dad had morphine on a drip that he could click to dispense as and when needed.  I wouldn’t worry too much about him not eating at the moment. The anaesthetic can mess with your stomach a bit. And he has plenty of time to build himself up before the bowel op. Have they indicated whether they’re going to go straight in for that as soon as he’s recovered from the liver or whether he’ll have any more treatment first? Make sure that you have all the support you need lined up before they discharge him. You might need the district nurse to visit to help if he’s still got a drain and to change dressings. Take care. Thinking of you both x x

Well he did not get home today as his markers were up.  We got there about 1 and he was asleep.  I saw a syringe which I thought was empty and about an hour later the nurse came round to take his thing out and asked if he was in pain.  Les said he had oromorph about 1 and guess what, the nurse said oh you were asleep so I left it for you.  This is a controlled drug and should have been locked up, I was fuming. He took it.  She then had a look at the site of where the drain was going to be taken out and there was a huge bruise bigger than my hand. She took the drain out and rang the doctor who said to keep an eye on it and mark it. No one had checked it before we came away.  Fuming again. They don’t know what is causing it. I am so anxious now.

i don’t know how Helen travelled back and forth as this is so exhausting.  Bloods again in the morning to see if markers are down.  This is a right rollercoaster.  He is in agony so not sure how he will cope with the journey home.

thinking if you all xx

It's such a worry for you, I understand your frustration The nurses and doctors have been great with my husband but they are so busy and get distracted. I think they forget that they do this everyday and know what's going on but for us it's a very strange and scary world.

I hope the markers are good tomorrow so he can go home.

Nancy x

Thank you Nancy.  They are used to all this and we aren’t.  It is just so worrying xx

It’s understandable that you would be frustrated. My dad had really good care at Freeman, but what you’re describing doesn’t sound good. I hope they manage to get his pain under control soon.

My dad ended up in hospital today. The pain got too much and when my parents rang up they were asked to come in. His scan results were finally available (it’s taken well over 2 weeks) and the cancer has spread further and the tumour on his spine has grown and caused a fracture in his spine. So angry that it’s taken so long for them to realise that he’s fractured his spine. They’re stopping chemo treatment now as it’s clearly not working. He’s had an MRI scan this evening and just waiting to see what’s next. He’s been sat in a waiting room for 9 hours waiting for them to find a bed for him and they’ve just now got him settled onto a ward. This disease is just so viscous and cruel x x

Matt I am so sorry to hear about your dad. This disease is dreadful.  I really hope they get his pain under control. Les is getting good care but there are things I am not happy with. I haven’t complained as Les is happy with the care he is getting. I think I am asking too much.  If his bloods are okay he will be home today, if not he stays. Are you travelling again to see him.  My thoughts are with you and your family.  Words are not enough but I will be thinking of you all xx

Hi, I hope you don't mind me joining in, but I have been in a similar position to all you ladies a couple of years ago. I joined this board when my husband was diagnosed with bowel cancer.

He had to be fed by tube at various points and I was worried as he was often waiting hours for water to be put up. I began to nag about this, even to the point of ringing up to check if he had it!! I have found that they have too much to deal with, and too few of them doing it. So, I think you have to keep an eye on what is going on and intervene if necessary. Apparently, They used to take his water and say it was 'to shut the wife up'.!!! 

Keep your eye on things, Distraught. And all the best. xx

No we don’t mind the more the merrier. Unfortunately we live over an hour away and visiting is limited. Then we have to drive back. I did stay in a Joel for a couple of days but that too was exhausting.  I am just hoping they have checked this huge bruise to ensure it has not got any bigger. My daughter will ring up at 10 to see what is happening. I do know they are understaffed but on the afternoon they are all sat around chatting.  I think they expect the visitors will help out and let them know.  One of the nurses cannot speak English so that is hard for her but does the obs at 3. We have to wait again for his bloods to see if he comes out today so will take things like pillows etc so he is comfortable for a long journe home.

thinking of you all xx

Yes, I used to get the daughters to ring up if I felt I had nagged enough!!!!

I was fortunate in that the hospital was only half hour on the bus which stopped right outside. I spent most afternoons there, so saw quite a lot of what they had to deal with. I found it was basic nursing care that was lacking. If my husband didn't feel up to walking to the bathroom he didn't get a wash unless I got a bowl and towel for him. It transpired that his bed was short of a washing bowl !!! Pretty basic in my opinion. I am not a nurse, but have looked after children when ill.

Yes we will check again. If I had to get a bus it would take over 2 hours.  It is such a worrying time xx