A forum for family, friends and carers of pancreatic cancer patients

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alimc77
Posts: 17
Joined: Mon Aug 03, 2015 12:31 pm

New Member......so glad I found this forum

Postby alimc77 » Thu Aug 06, 2015 1:34 pm

Hi,

My dad was diagnosed with pc in early summer and is now on his 3rd cycle of folfirinox. His side effects are quite strong, he's losing his hair, has no energy, dry skin, no appetite. I'm struggling to know what to do to help him. He just seems to have lost all motivation to fight. My heart breaks when I see my once strong and young at heart dad looking so old and frail. He was only given the all clear from prostrate cancer at the start of the year and now has this to cope with.

Anyway just wanted to introduce myself and say I've already found this forum a great help so thank you.

Ali

WilliamS
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: New Member......so glad I found this forum

Postby WilliamS » Thu Aug 06, 2015 2:25 pm

Hello Ali
Sorry to hear your Dad is facing a second battle with cancer. Of course no-one wants to join this forum but it is a great source of support and information, and the nurses on the helpline are wonderful. Best wishes.

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: New Member......so glad I found this forum

Postby sandraW » Thu Aug 06, 2015 2:37 pm

Hi Ali,
Welcome to the forum, the place no one wants to be, but where you will get lots of support.
I am sorry to hear about your dad this disease is truly horrendous, how sad after getting the all clear he for the previous problems. It must be very hard for your dad to try to remain positive, when he is feeling so unwell, all I can suggest is just support him, make him small meals to try to tempt him to eat, I used to be quite bossy with my husband, telling him he had to eat, and literally standing over him, but I realise that might not be an option with your dad.
My husband has 6 Folrinox straight after 6 5FU, and he didn't loose his hair though it did thin, he had 5 months off when he felt great until the tiredness hit him again as the tumour regrew, he restarted Folfirinox and on the 2nd cycle his hair fell out quite badly but it did regrow again.
I hope with the next treatment he feels a little better, as his body gets more used to the treatment.
take care sandrax

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: New Member......so glad I found this forum

Postby kittycat » Fri Aug 07, 2015 11:09 am

Hi Ali, I know it's such a difficult time watching a loved one suffer when there seems so little you can do to help. My husband has had 6 folfironox and initially suffered really badly with sickness but this now seems better controlled through medication. His hair is definitely thinning but it's still there. The biggest problem at the moment is fatigue and there's nothing to be done about that other than listen to your body and rest. Just give him all the support you can and, like Sandra says,try small meals. My husband sometimes struggles and it is hard work, but just do what you can.

Sue

alimc77
Posts: 17
Joined: Mon Aug 03, 2015 12:31 pm

Re: New Member......so glad I found this forum

Postby alimc77 » Fri Aug 07, 2015 2:32 pm

Hi,

Thanks everyone. It's definetly the fatigue which is hardest to deal with at the moment. When I'm not there I worry he isn't coping. He picks up during 2nd week and then it's back for next cycle and start all over again.

Ali

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: New Member......so glad I found this forum

Postby sandraW » Wed Feb 24, 2016 12:55 pm

Hi Ali,
Just seen your post on another thread,
How's your Dad doing, sorry to hear the treatment has stopped, but you say his appetite is improving,
hopefully he will get his appetite back a little.
Just to let you know I am thinking of you too sandrax xx

alimc77
Posts: 17
Joined: Mon Aug 03, 2015 12:31 pm

Re: New Member......so glad I found this forum

Postby alimc77 » Wed Feb 24, 2016 1:45 pm

hi, thanks Sandra. At the moment he isn't too bad, in quite a bit of pain, back, stomach and bowels and very tired but he's still getting out and about when he can. He has accepted there is nothing more that can be done and always has a positive attitude! i'm a bit of an emotional wreck but holding it together for him and my little girl. x

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: New Member......so glad I found this forum

Postby Proud Wife » Wed Feb 24, 2016 7:11 pm

Hi Ali

My hubby was diagnosed a few months before your Dad and I know exactly what you mean about being an emotional wreck. Good on your Dad for getting out and about when he can and long may his appetite continue to improve. I do hope they can get on top of his pain though as that must be hard for you all.

Good luck xxx

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: New Member......so glad I found this forum

Postby shelda » Thu Feb 25, 2016 11:12 pm

Hi Ali, sorry that you are feeling so emotional, it's awful seeing the person who raised you going through this, my mum was diagnosed in the summer and the hopeless of this disease is just awful!!! Fingers crossed for him to continue to get out and about, sounds like he needs some help with pain management. I sure hope you've someone supporting you whilst you are trying to stay strong for your dad and daughter. Sending big hugs xx Shel xx

alimc77
Posts: 17
Joined: Mon Aug 03, 2015 12:31 pm

Re: New Member......so glad I found this forum

Postby alimc77 » Fri Feb 26, 2016 10:13 am

Hi Shelda, yes it is awful, I lost my mum 6 years ago and that was heartbreaking but it was quick, this is totally different, watching your parent get weaker and weaker. I have my partner to support me and my dad has a partner, she doesn't live with him but sees him most days and has been great throughout all this. He is now attending the local hospice once a week so they're helping with the pain management. I saw your post on another thread about you mum sounding confused, my dads been like that the last few days too so keeping an eye on that. Ali xx

Fifi

Re: New Member......so glad I found this forum

Postby Fifi » Sat Feb 27, 2016 12:39 pm

Hi Ali,

Pleased you have posted here, and I hope it will be a great source of support for you.

My Dad was diagnosed February 2014. He was 61. He was so strong, so active, and I watched him decline so heartbreakingly, watching him struggle broke my heart. I had to stay strong, made myself be his shoulder, for whatever he needed it for. I never let him see me upset, I had to stay positive when I was with him.

I really really hope they sort the pain out for your Dad.

Leila xx

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: New Member......so glad I found this forum

Postby shelda » Sun Feb 28, 2016 12:16 pm

Hi Ali, how is your dad this weekend??
xx Shel xx

alimc77
Posts: 17
Joined: Mon Aug 03, 2015 12:31 pm

Re: New Member......so glad I found this forum

Postby alimc77 » Mon Feb 29, 2016 9:40 am

Hi Shelda, I haven't seen my dad this weekend, I was away with friends, had been organised for ages and although i was reluctant to go it was good to get away. My partner and daughter saw him though and he wasn't too bad, still mananging to eat and get up and about. he couldn't speak on the phone last night as his throat too sore so will pop round today and see how he is. He never admits how ill he is feeling, probably to protect me and stop me worrying!! but i'll get it out of him!! hope things ok with you xx

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: New Member......so glad I found this forum

Postby shelda » Fri Mar 04, 2016 10:42 pm

Hi Ali, hope you and your dad are okay?? X

alimc77
Posts: 17
Joined: Mon Aug 03, 2015 12:31 pm

Re: New Member......so glad I found this forum

Postby alimc77 » Thu Jun 09, 2016 5:03 pm

hi, I can't believe it's been nearly a year since I posted here. I don't post often but I follow everyone's stories and share your heartache.

My brave dad has fought for almost a year now but we're near the end and the emotions I'm going through are crazy. I don't want him to suffer but I don't want him to go, I can't imagine life without him.

I already know the grief of losing a parent, my mum died suddenly 7 years ago but this is a totally different kind of grief, having to watch him suffer and knowing there is nothing you can do to stop it.

He wants to be at home and we are trying our best, he is never alone. My little girl is only 9 and already lost her granny. I don't know what to tell her, she knows grampa is not going to get better but she thinks that just means he will be like he is now forever.

Has anyone else kept their loved one at home, how did you manage and what was it like at the end?