Wish someone would help him

Thank you Didge, very lovely of you. Why did he try to change hospitals? Did they mess up? Pleased you got him back them, not a good time for him to change. Though, if they are as I expect, I can understand why.

Leila xx

No, not really. Just had a wobble and made irrational decisions!

You are doing an amazing job Leila, take care

love Jayne

x

(Nikki, you and Paul make a very handsome couple, what a smile he had, bet he lit up a room when he walked in. Ill post a photo of Jem later and will sponsor you)

Hi Leila,

How is your Dad? Is he a little better?

Sue x

Another horrible few days.

Dads pain under his right rib is getting constantly worse. Though i don't think he was taking the oxycodone strictly every 4 hours, i believe he is now though.

Dads back pain has spread up to between his shoulder blades. He also has pain below his belly button. His appetite is also deterioting.

He is very tired and has zero energy.

He went to the shop yesterday and nearly passed out, they had to rally round him and get him a chair.

I called the hospital to soeak to the research nurse, who has always been good to us. He told me if dad is in pain amd is going dizzy, then he doubts chemo will be an option and then it is just pain control. I felt like someone had smashed a brick in my heart. I was expecting bad results this coming Monday, but I wasn't expecting Dad to not have long left.

When I got home from work yesterday, my Dad called me and asked me to get him in hospital. I called them and they said they would send an ambulance. My Dad never wants to go in hospital but he said he wanted to and that he hadn't eaten yesterday at all.

It got to midnight, and still no ambulance. By this time, Dad was mad, and said he felt better and wanted to fo to bed. I called the hospital and they apologised for the ambulance not turning up. Guess it was Friday night drunks that stopped them, thanks for that!!!

Got to bed about 2am, absolutely shattered. Dad called me at 8 to say he managed breakfast and was looking forward to the Grand National. I just don't know what is going off. I don't know whether I am coming or going, crying or smiling.

( Sue has Shingles, I have hair falling out and a problems with my gums, caused by stressed). Thanks pancreatic cancer, you €$*€$*€$*€$*€$.

Leila xx

Oh, Leila, what can I say?! Your dad has been remarkable and good for him rallying and having breakfast and looking forward to the Grand National (as am I). Although it is terrible that they didn't collect him, I hope he has a better day today for NOT being in hospital. I think we are also at the point where no more chemo is going to be offered - had a fruitless visit to hospital app yesterday when it turned out the consultant was on holiday so no progress made, but it looks unlikely that any kind will be offered now as he just can't tolerate it. But your dad gives me hope that we might still have some time left - he's been amazing. But how we all cope with the stress, I really don't know. I'm sometimes amazed that I'm still here as it feels like it's at lethal levels xxx

Dear Leila,

As we all know there are no words that can change this and make you feel any better, but you know I am thinking of you and your Dad. Glad it turned out ok, him not going to the hospital. If possible do persuade your Dad to get his local hospice involved. There is no way I would ever have taken Paul to our local hospital, but the hospice were so great at sorting out the pain, and it so much nicer an environment, and they supported us for nearly 2 years.

Didge thinking of you too, how frustrating about the appointment, when we all know how we build up our expectations, the hopes and the fears, and then for it to be fruitless, I feel angry on your behalf,

Love,

Nikki

Leila,

What a terrible time we are all having at the moment, the stress involved for all of us is bad, but for you not being with your Dad it must be so hard for you to cope. How we all carry on and not just turn into jibbering wrecks shows how strong we are, because we have no choice but to be so.

Its so wrong that your dad never got his ambulance, but perhaps in this case it was for the best, as at least he can watch the Grand National at home, and enjoy it, and that's what its all about isn't it enjoying all they can. Are you going with your Dad on Monday for his appointment? lets us know how it goes please. Just try and look after yourself as much as you can love sandrax xx

Didge,

What a pain, having a wasted journey,like that, the powers that be just don't understand, how we have to build ourselves up for these appointments, and then its all a waste of time. I don't know what to say about the no more treatment, really I don't, but I think we are probably in a similar position too, it just doesn't bear thinking about, and as for the stress, its all so overwhelming, just take care of yourself too, love sandrax xx

Massive hugs to Leila, Sandra and Didge, try and look after yourselves too but I know how hard it is.

love Jayne

xxxxx

Sorry you ladies have all been having it so rough (and obviously your loved ones who have it even worse). I hope there is at least some light relief coming your ways xx

Oh my ! I have to agree with what RLF as said so you all just keep on keeping strong ! with love and understanding from one who as been there done it all got the tee shirt as crass as the saying is you will come out the other side but the bloody thing that PC is makes it a hard unforgettable journey .

Love and virtual hugs it's all I can give you Emma xx

You are all so wonderful, how you cope with these dreadful times. It's agony seeing your loved ones in pain and feeling so helpless but as I read all your stories (and the mistakes seem to appear time and time again) it makes me feel less alone. I know trying to be strong is difficult and hopefully there is light relief on the way. Big hugs to you all.

Sue

Nikki, Dad will not consider a hospice. He relates them to dying. But, I have managed to get him to try a Macmillan nurse again, a different one to before. She is coming round next Friday. Hopefully this one will be more sensitive to him.

Sandra, I will be going with him tomorrow. I am absolutely dreading it. I know the results are going to be bad, it is how bad that is worrying me.

Dad just called me, he sounds a little slurry, and has a little back pain. He says he is ok with it. He believes that when we go tomorrow, he will be having a blood test, ready for chemo on Wednesday. I hope with everything I have, that this is the case.

I think he will have to have a CT scan again, as he had it done in his local hospital and they didn't use contrast. He asked for it, but was told they don't do that there. So I am presuming, we won't be able to see the pancreas. The liver is the biggest concern though, I feel there are many more tumours on it now. I don't think folfox has done anything. BUT, it is obviously all speculation on my part, until proven otherwise.

Leila xx

Will be thinking of you both tomorrow Leila, and really hoping the news is better than you are expecting. That's good news that you have managed to get him to see another Macmillan nurse. There are some really good ones out there, so hopefully this one will be what your Dad needs, and will take a little bit of the pressure of you.

Hi Leila,

I hope the appointment goes well tomorrow try and stay positive, I know it's hard! I can only say this is like living in a permanent nightmare!

You are fantastic at supporting your dad and I know how ever hard or stressful we will continue to do so!

I know I am stressed and my body is definitely telling me! Shingles is very painful but thankfully my spots are drying out now and the pain is definitely better today than it has been!

I will be thinking of you tomorrow. Stay strong.

Love Sue x

Hi Leila

Hope the appointment goes well tomorrow and your Dad gets some positive news.....

Will be thinking of you xxx

hope everything goes well today Leila

love Jayne

x

Hope things are not too bad today, Leila for your dad AND you! x

Leila, I hope today goes well and that chemo still remains an option. I also hope your Dad backed the winner on Saturday! I am sure you will update us fully later, but give him my best wishes for the meeting today.

Steve

X

Fingers all crossed for better than expected news today Leila, lets us know how it went, love Sandrax xx

We saw the consultant Monday. He said Dad could no longer have chemo as the tumours on his liver have increased significantly. He also said that he back pain was caused by lower lumbar bones collapsing, not

Sciatica.

We were very upset. They said they would like to keep him so they could give him proper pain relief for his back.

The Macmillan nurse came to see us. My Dad started to ask her how long she thought he had left and he started slurring and collapsed. They rushed me out. When I went back in, he was speaking ok. They thought he had a mini stroke and have him a ct scan. It didn't show anything. A few hours later, he was slurring very poorly again.

Next day when I went to him, I spoke to him and he never answered me. He had a MRI and it showed he had had a moderate to sever stroke.

Dad longer speaks to me. No more texts or calls. No more I love you's

I spoke to the consultant yesterday who said his liver is covered in tumours and he has possibly a few days to a few week at the most.

I am trying to get him moved to a hospice near his home.

I believe he has rib pain. They have put a patch on him. I don't want this for him. He wouldn't want people helpin him going to the toilet and helping him dress.

They asked me yesterday whether to cause him discomfort by feeding him and whether I consent to resuscitation.

I just can't believe all this has happened since Monday morning.

I cannot describe the pain in my heart.

Dad holds my hand and strokes my face. I just wish he would go to sleep now.

Leila xx

My dearest Leila,

I am so very, very sorry. It just seems that it is the nature of this disease that things just happen very quickly all of a sudden, which can only leave you reeling. I have to keep this quick, as I have to get the girls from school, but if you need someone to talk to, please ask Jeni or Dianne for my email or phone number,

lots of love to you and your Dad,

Nikki

Dear Leila,

My heart goes out to you and your Dad. This disease is so relentless and just when things appear to be going okayish something else happens and changes everything. Your Dad has battled bravely, thanks to the support and determination of you getting things done. It is so wrong that people with PC have to battle and fight all the time. It is so tough to sit and watch the person you love dearly suffering. Like so many others on the forum you always give so much support and encouragment to others. Love to you both at this difficult and stressful time. You are both in my prayers and thoughts. Annette xx

My heart is aching for you and your Dad Leila. Pc is so relentless. You have been amazing through all of this and I wish I could give you a hug in person.

love Jayne

xx

Leila, I am so saddened to hear what is happening to you dear Dad. You have worked so hard for so long to help him through this. He is lucky to have a Daughter who loves him so much. Nothing I can say will take away the pain you are feeling at the moment, but I will be thinking of you and your Dad.

Keep us posted and look after yourself.

Steve

X