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Wish someone would help him


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Leila, sorry to hear about your poor Dad, we all seem to be struggling with treatments at the moment, I sincerely hope he feels better soon, take care sandrax xx

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  • sandraW

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Spoke to dad about a hour ago. His voice was so slurred. I told him I was going to call the hospital for advice and he made me promise not to get him admitted. They just said to keep him hydrated and they will see him Monday. I told them he was hydrated. But you see, he isn't. He can only put water to his lips, any further and he will be on the toilet. He seriously cannot take any food or drink.


I know I made the wrong decision, he needs to be on a drip but he really doesn't want to go into hospital. He so bloody stubborn it is untrue. I will see how is he later and I'm going to have to be firm with him. I don't want to go against him, but he can't do everything on his own, like he wants to.


Leila

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Thinking of you Leila

(I know how hard it is when all you want to do is help and make it better...)

You're doing such a good job looking after and supporting your Dad


xxx

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Leila,

Paul hates going in to Hospital (he's in at the mo. will update when I can) but once he is there he always feels a sense of relief, but the decision is your Dad'. It's so hard for you being so far from your Dad and only being able to judge how he is by phone, but you are doing an amazing job.

Lots of love,

Nikki

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Hope your Dad sounded a bit better when you spoke to him Leila.


I wonder if tiredness is making him sound slurred.. You said he'd been up til 4.30am.


I hope things have improved today


Cathy xxx

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It all sounds so tough for you both. Leila are doing so well with your dad. I know Ray was really tired on the chemo so expect that as a side effect.


Hope your dad get his bowels sorted quickly and starts to feel a bit better.


Julia x

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Thank you everyone for your supportive words. As always, it means a lot.


Dad is ok. I didn't admit him, whether that was the right decision or not, I don't know. He has put a few lb back on, which has picked his mood up no end. He saw the Oncologist Monday, and he decided to reduce the 5FU by 20%, to see if that makes the diarrhoea not as severe. I seriously doubt it. Saw dad Sunday, he seemed well, and looks really well. I believe his anxiety is getting worse by the day. It's like he can't seem to hear you unless he wants to. If we are talking and I start and he hasn't quite finished, he will just carry on like I never said a word. Hard to describe. He also has spells of being very angry with the world.

He had chemo today. He said his vision is blurry, and his arm is tingly, but he didn't want to tell them in case they kept him in! He's a stubborn bugger.


Leila xx

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Hi Fifi I think parents are stubborn. my mums chemo has been reduced 40% now. It does make her life easier. My mum hasn't had problems with diarrhoea like your dad I hope they sort it out soon or at least help him deal with it.

You are doing brilliantly supporting him I know how hard it is. Keep up the good work. Love Sue x

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Leila,

What are these men like, glad to hear your Dad is feeling a little better, but I am sure its being stubborn that keeps them going, fighters at least. I am sure like Trevor dad will worry if he gets any aches or pains, and put everything down to the chemo, which I have to say I do too. I also think the treatment can affect their ears/hearing, well that's T's excuse and he's sticking to it, but I really do think it effects it.

Hope dad continues to improve, you take care sandrax xx

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Thank you Sue and Sandra. Sandra, what you said made sense, for some reason, I Never thought about the chemo. Dad scared me so much today. I contact him first thing every morning. Today, I tried twice. No reply. I was just about to call someone to go round when he called me. He sounded so tired. He said he felt the worse he ever has. That he wasn't hungry and he wasn't getting out of bed. Spoke to him again at tea time, he was in bed, said he just had some porridge. He said he knows he has to eat, he just can't be bothered. I am going round tomorrow. I wish I wasn't so far away. I told him that Sandra said he would be tired with this chemo. People on here seem to calm him down more than I do. If someone has said it, or done it, from here, then my dad seems to accept it.


Leila xx

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Sorry Leila, only just seen this I was watching the TV at the same time as checking the forum and missed your post, This is Dad's second Folfirinox isn't it, the 2nd always seems the worst, the tiredness usually hits Trevor on the Friday he has treatment on Monday, it is not unusual for him to literally sleep most of Friday, more of Saturday and ALL of Sunday, he gets up but sleeps in his chair, I wake him up for his meals, and he manages the odd hour of TV but that's it. I know your dad only had treatment yesterday but everyone is different.

I hope we do help by letting him know how others have struggled through, and after the 2nd, Trevor did find it did get slightly easier.

Its good that you are going tomorrow I am sure you will cheer him up and you can look after him, and pamper him a little, I do feel for you being so far away from him, but he is very lucky to have you. sending a big ((hug)) xx sandrax

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Thank you Sandra,


Yes, it was Dad's second treatment. You really helped, I told him what you said about Trevor, and it made Dad feel better that he wasn't alone. My mum calls him once a week and she rang while I was there and I heard him telling her that you said your husband was the same. He said he was half way to the shops this morning, and he had to turn back and go home. He said he just couldn't face walking any further. I thought he was over the worst, because he seemed really good yesterday.


Leila xx

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Hi Leila, the tiredness does lasts a few days and comes and goes, one minute Trevor is chatting and jolly, the next he is flat out in his chair fast asleep, and as I said that lasts for days, some better than others.

As for the question about the dentists needle, no T doesn't have that, when he is on the full Folfirinox his mouth is not too sore but the 3 treatments he had without the Oxaliplatin with the 5FU bolus increased, he had a very sore mouth, lasted a week, this is his first treatment without the Irricanitin still with a bolus but reduced, and so far his mouth is ok, everyone is different, and every treatment is different. Perhaps Dads funny sensation is caused by the Oxyaliplatin, as it is very cold at the moment, I hope he feels better soon sandrax xx

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Thank you for that Sandra. Again very helpful.


I spoke to him about half hour ago, he was very down. He said chemo wasn't worth it. Even on the good days, they're not really good days. He's not living his life. He doesn't like his life. He's fed up. He doesn't want it anymore. He can't drink alcohol ( because of the diarrhoea). I think those are the times I really can't cope with, but he has to get the words out of his system, and he only has me. I don't want him to build them up.


Leila xx

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  • 2 weeks later...

Dad couldn't have chemo this week. His bloods were too low.


It has upset him a bit, he keeps saying he has this thing growing inside of him, and there's nothing he can do to stop it.


Life is crap.

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Hi Leila life is crap sometimes you are right! No one can be prepared for pancreatic cancer , or any Cancer, it is awful! You have been so strong for your dad and you will find the strength to carry on . I can understand we have to get old but dealing with this cancer is hard!

Since my mum had been diagnosed my life has changed and will never be the same but I will support and be there for her and you will be for your dad as well!

Stay strong and do what you can for him. We are here to listen.

Sue x

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Hi Leila, you are right life sure is crap!!! and we are all struggling at the moment too. The furry fox does seem to cause problems with bloods, Trevor has been lucky it only happened once in his (dare I say the number) you know the one after 12, treatments. Did they mention to your Dad about giving him some injections, sorry I cannot remember the name of them, they help to increase the neutrophils if that's what's wrong in your Dad's case. Usually chemo is only delayed for the week, if Dad's bloods are ok next week and treatment goes ahead, then they will probably give him the injections to have for so many days that week, to make sure his bloods stay ok.

I understand exactly how your Dad feels though, Trevor is the same, he says he feels as though the cancer is rushing around his body getting everywhere, when he can't have his treatment on time.

I hope your Dad and you too, get your positivity back soon. take care love sandrax xx

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Hi Leila, I am really am sorry to hear your Dad couldn't have his chemo because of low bloods. I have had this as well, both with Folfirinox and and GemaCap. It is however so frustrating to want the medication, but having it stopped because of low bloods. I hope he can get back on track really soon and hopefully as a result help with his mood.


Thinking of you both.



Steve

X

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Thank you Sue, you put me back into perspective, and I've picked my chin back up. I can't afford to think like that, I have to be strong for my Dad, and I will be.


Sandra, thanks, I have mentioned the injections to my Dad, and he wants them ( anything to receive treatment), but I don't think the Oncologist is keen on them. Dad has mentioned them to him, but he says that they only like to give them if absolutely necessary. If Dads bloods are low again on Monday, then I shall ring him and request the injections.


Hi Steve, thank you for your post. I read it out to Dad. He always seems better if it is something you have had or been through. Everytime something new happens to him, he always asks if you've had it. In fact he asked me to ask you about alcohol. Do you still fancy one and can you drink it like you used to? His mood was better today, but his memory is really poor.


Thank you Jay, I definitely need one.


Been to Dads today. He seems ok. He hasn't been able to put half stone back on, despite eating very well. He likes Horse Racing and he's winning quite a lot of money at the moment. He says someone is laughing at him and giving him loads of money that he can't spend. It's strange, he enjoys winning, but at the same time it is getting him down.

We have had a little break through with the diarrhoea, he has found that if he has a fillet steak, he doesn't go to the toilet until the next morning. He gets really bad stomach ache because he's not going though. He said he feels like he needs to go, so he has a big glass of water ( which normally makes him go) and he still doesn't go. He said he feels wonderful from the drinking the water. Normally, he can only take little sips and he's on the toilet. I told him to try it when he's just had chemo, see what the steak does for him then, when he's at his worse.


Leila xx

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Scrap the steak idea. It worked for two days, like everything does, and then his body is used to it, and wins. Dads diarrhoea is bad again today. He is worn out, and dehydrated but yet again, he is scared to drink. I've told him to just try and keep wetting his lips, at least he will get a bit of moisture that way.


Leila xx

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Leila, your dad has become a hero to me over these months. He's such a Trojan, he keeps going in spite of all the setbacks and the awful situation with the diarrhoea. Tell him I used to work for the Racing Post and I'm delighted his bets are coming in. I am sure there is something he can spend it on - some music perhaps, or a book to read or painting to look at. xxx

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Thank you Didge, that means so much to me. He really is my hero, he is fighting so very hard, and in a way, that makes it all the more sad. I really wish I could do something more to help. I will tell him that you used to work there, he's been this morning to have another bet. He won £216 on Friday. He keeps trying to explain it all to me, but it just goes over my head.


Dad is at hospital on Monday for blood tests again, hope they are ok for chemo on Wednesday.


Leila xx

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