Wish someone would help him

Hi Leila,

Hope your dad is feeling a bit better now, how was he over the weekend?

Did you manage to get some support for him in place yet, I hope so, let us know how he is doing.

sandrax xx

Hi Leila,

Hope you and your Dad are ok. You are doing so well. I bet your Dad is so proud of you,

Lots of love,

Nikki

Thank you everyone for your lovely comments. I really do feel cared for and I wish I had the strength to post more often.

It has been a strange few days. As you know, Dad wasn't good Friday. I spent the day in tears. His low mood, and the things he says, absolutely breaks me. I cannot describe to anyone how much that hurts. But, saying this, I think it would hurt me more if I knew he was keeping it all in.

Sunday, me and Paul went to see him. He has never said anything in front of Paul, he always just says it to me. But we walked in and he said he had been cursing him upstairs, telling him to bring it on, that he couldn't hurt him anymore than he is doing. That was all he said, and even Paul welled up, so maybe he might start to understand now. Dad was in chronic pain, he really could hardly move. He says he can't get in and out the bath, and said he doesn't want me to help him there. I washed his feet and helped him move around. He was absolutely convinced that the cancer had spread.

I emailed his oncologist and asked him to give dad a scan in his back, and asked for some nerve pain killers.

Dad saw him on Monday. He did have a scan, on his back only, and it was clear. So sciatica it is. They gave him liquid morphine and Pregablin. Dad has lost 5lb. So he is back down to 9st 8.

Yesterday, Dad called me at work. He sounded out of his face. He didn't know where he was. He said someone had called him and asked for Mr Morris, he said he didn't know who Mr Morris was! I asked what he had done. He said the spoon with the morphine was too small, so he sipped it from the bottle. He said he pain didn't go away, so he had ' a few sips'. I was absolutely fuming with him. I was that mad I was shaking. I called someone to go and sit with him until he came round. He will not be doing that again.

Today, he has been ok. No stunts.

Leila xx

Oh Leila!!!!

Poor you, but what your dad did with the morphine is just so easy, Trevor is now on 10mg Oxycontin twice a day with either paracetamol or oxynorm for breakthrough pain, and the other night during the night Trevor did the same woke up with pain so took an oxynorm, woke up a couple of hours later still in pain so took another, so now I only leave one tablet out for him, and he has to wake me if he needs any more, I usually wake up if he gets out of bed anyway. I know that's not an option for you of course, but like I said its so easy to do. At least today was a good day.

I do hope his pain subsides, as I said to Sue this Bloody disease is just relentless.

Just lets hope they all feel a bit better soon take care sandrax xx

How is your Dad Jay, have you got results?

Leila xx

Readig about Trevor Sandra, it sounds just as I imagined my Dad was. Thinking he still had pai , so he would have another sip!

Anyway, he's stopped with the morphine and with the Pregablin. He said he can't physically feel anything, and he had an accident last night. He said he doesn't want that to happen again, so he will put up with pain. It all seems a lose lose situation, for all of us.

Leila xx

I'm really sorry that your dad and you are suffering. Just a suggestion, we found a probiotic called VSL3, used for Crohns disease. We managed to get the doctor to prescribe this for my dad and it did help a bit, wish we found it earlier as quite clearly the imodium was doing absolutely nothing for dad. Look it up and maybe suggest it to your dad. It can be put in food or added to water. Your pharmacy will probably need to order it in as its a probiotic so has a short life. I know what its like when you are constantly trying to find medication that works and find something they might fancy to eat or drink

Hope this gives some relief, good luck

Vicky

Leila,

How is your dad doing? I hope he and you are both ok, please let us know when you have time sandrax xx

Thank you Sandra.

Dad called me an hour ago. He sounded very out of breath. He said that bad pain came on suddenly this morning. Under his ribs on the right side. He said it is taking his breath away and he's not even going to have any dinner. He said he was going to go to bed. I know that pain under the ribs is a bad sign. I'm very worried and feel in limbo while I wait to hear from Dad again. I have made a note of the medications that Sandra's Trevor has, and will ask for these if necessary. I feel desperate to hear from him, but guess I can do no more until he calls me.

Leila xx

You sound like a very special daughter. Its not easy seeing our loved ones in pain. I do hope the medics sort out his medication - I am sure there must be something that will help him. Take care and thinking of you,

Cate XX

Hi Leila I hope you have heard from your Dad to put your mind at rest. Hope everything is ok.

Love Sue x

Hi Sue,

Heard from Dad just over a hour ago. He sounds very breathless. He said the pain under his ribs, is like a pang, and like stitch. He told me that he was actually in the hospital this morning, when the pain came on! He didn't tell anyone because he didn't want to be kept in! He said he is going to try some tea and see if the pain goes away.

He has a ct scan tomorroe, first one since December. I know he is incredibly anxious for this.

If he had mentioned the pain while he was in there, they could have given him pain relief. I can do it for him, but will take me a few days. Then the chemist will have to order them in. He is such a stubborn man.

Leila xx

Dads going into hospital. His girlfirend just called me and asked what was wrong with him because he is distressed. I called him and he is sobbing his heart out and can hardly breathe. Called the cancer hospital and they have called him and he is going in.

At least he isn't on his own. I should have called someone earlier. He begged me not to, but I couldn't stand it any longer.

Leila xx

At least the hospital will be able to get his pain under control and can reassure him. Hopefully you can relax a bit as you know he is being cared for and you can call a nurse for an update day or night. Hope you all have a peaceful night.x

Hi Leila how is your Dad? Have the hospital sorted out the pain and breathlessness? I hope everything is ok.

Love Sue x

Hi Leila, I hope dad is feeling better, and getting better care than we and Sue's mum is, take care love sandrax

Keep going Fifi you are doing all you can for your Dad xxx wacky

Thank you so much rsk1974, Sue,Sandra and Wacky.

Sorry I haven't been on here. Last few days have been horrendous.

When Dad was first admitted, they gave him paracetamol for pain. I called the hospital in Sheffield that he goes to and told dads oncologist. He called the hospital and told them what to give.

Dad has been incredibly upset, been so horrible.

I went there yesterday. When I got there, he asked for water. They said no, as he was on a water restriction. I said, I hope you are joking, he is dehydrated he needs to drink as much as possible. They went and checked and came back and said they had notes mixed up with the man in the bed before him!

Next, the doctor came round and asked how long dad had been on radiotherapy!

Dad had a CT scan on tuesday. They were going to give him results yesterday but I was worried they would have nothing to compare them to, as last time he was there was when he was diagnosed. I called his oncologist and he said he has called the hospital and asked them to call him first, and that he had also made the December scan available for comparison. SO, the doctor cam round and informed us dads cancer has spread to the liver. I told him we have known this for 14 months and has he spoken to Sheffield. He said no. I asked which scan he was comparing it to, he said the one from 14 months ago. I told him what the oncologist said and he huffed about and walked out.

Next, a lady doctor came and asked me how I am in contact with dads oncologist, i said frequently, by phone and email. She said, so can I leave it with you to get results then. I said why not! Then I got my Dad out.

The pain went about lunch time, he said it went as fast as it came. They gave him 5mg oxycodone.

This morning he called me to say his pain was back. But he had some oxycodone and it went completely again. He is supposed to take it every 4 hours, and he won't wake during the night to take, so that's probably why.

We never got any results in the finish, so we will next get those on the 13th April. Going to be a long wait for us both.

Leila xx

Hi Leila,

Wonderful to hear you are still doing such an amazing job fighting for your Dad, but how frustrating that your fight is so relentless, made worse by so much incompetence!

Hope your Dad's pain is under control. Has your Dad tried any of the painkiller patches, and then he wouldn't have to worry about taking them at night?

Lots of love,

Nikki

Hi Nikki,

Lovely to hear from you. Read that you have been away. How are things with you and your girls?

When Dad has pain, he is very breathless and sounds dreadfull. But it doesn't gradually wear off, it just goes, just like that. I didn't know you could get patches? Are these the same as oxycodone? Will definitely speak to someone about those for him. Thank you.

I know the scan results are going to be bad, I don't think folfox has worked for him at all and that it has grown on the liver. But, no good guessing.

Really nice to see you on the forum Nikki.

Leila xx

Hi Leila,

I can't remember if there are oxcoydone patches, but there are some that work in the same way, so worth asking.

Girls and I are ok, we miss Paul very much, but we try our best to be strong and make him proud. I have started my training for my 100km walk for PCUK in September with my friends, which is a good focus, and the girls are working hard at school. I plan to go back to work at some point soon (I am a Health Visitor). Have put Paul's picture on the tribute wall, if you want to see what he looked like.

Keep doing what you are doing Leila, your Dad must be so proud of you and I am proud of you too. I hope if I am ever ill my girls fight my corner as you well as you fight your Dad's.

Love,

Nikki

Hi Leila, you are doing a wonderful job, its just soooooo frustrating, we are having similar problems with staff that just don't seem able to listen, they ask for information, you give them the info, but then they do something totally different, so what's the point of asking. I do hope your Dad can control his pain, and that you get better results than you are expecting, its all so scary, take care love sandrax xx

Nikki, Lovely to hear from you, thanks for your continued support, I really appreciate it, so glad to hear you are doing ok, but then I knew you would, but don't be too hard on yourself grief and tears are healing, I will definitely have a look and see your lovely Paul on the tribute wall love to you and your girls sandrax xx

Thank you Nikki,

I will definitley find out about those patches. Can we sponsor you? I would like to. I have just looked at Paul's picture. What a lovely warm smile. He looks like he was a very kind and fun man, easy on the eye too. Thank you for your kind words. Dad doesn't always make it easy to help him, with his stubborness, but I do my best.

Sandra,

I replied on your post, I have read about the people at your hospital, it just does not shock me anymore. Level of care has gone out the window.

Leila xx

Of course you can sponsor me Leila, that's lovely of you. I have set up the page but haven't sent it out to anyone yet, as family and friends were very generous donating to our hospice in Paul's memory, so I am waiting awhile before I ask again!

https://www.justgiving.com/Nikkisalt

Leila, thinking of you always, and hoping the scan isn't too bad. Your dad has done remarkably well with liver tumours for last 14 months so hope he carries on. Have been reading your posts but not posting much recently as we had a bit of a crisis. New apps now set up after he tried to change hospitals and cancelled everything. Got him back to old one in the nick of time. Nikki, saw your tribute a while ago. Very handsome man, your Paul. Hope you manage to enjoy Easter with your girls. That goes for all of you on here! Not always easy I know. xxx