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

[alimc77]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[Guest]

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]

Hi Ali, how is your dad this weekend??

xx Shel xx

[alimc77]

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]

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

[alimc77]

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?

[Dandygal76]

Hi Ali. I have not been through this but I send you my love for what you are going through. Children are very resilient, my child is a similar age and understanding and trust me on the one thing I can advise upon, she will be okay. You concentrate on you and your dad and I wish your dad a pain free journey. x

[sandraW]

Hi Sorry I cannot help with the at home problem as my husband died in the hospice, but there should be lots of help for you, I hope things go well for your lovely Dad.

As for your daughter our granddaughter was 9/10 when we lost her Granddad we explained that he would not want to stay being so poorly and she agreed, she even spoke at his funeral/ celebration of life, which was the day after her birthday which she thought was very special. She wanted to and got up with her 6 year old cousin and said the piece she had written herself about how much she loved her Granddad, the little one just said "I loved my Granddad and he used to lick me all over like an icecream" ther wasn't a dry eye in the house. She cried quite a lot for the first few months and now talks about him all the time as we all do, children are amazing. love sandra xx

[PCUK Nurse Dianne]

Hi Ali,

Sorry to hear you are struggling just now. I have sent you a personal email that may have some helpful information, and of course do feel free to come back to me.

For anyone struggling with children in a similar situation there is a brilliant charity that is very helpful in dealing with bereavement in children - it is called Winston's Wish and the link to it is here: http://www.winstonswish.org.uk/.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK Support Team

[alimc77]

Thank you all. My daughter is very shy and sensitive and i'm worried how she will cope with this. Will read your email Diane.

Sandra we do have lots of help at home, district nurses, marie curie and macmillan. It'sonly me and my brother but fortunately he lives with my dad so there is always someone here. They think we should have him in a hospice but the nearest one is miles away and he wants to be at home. And if thats what he wants we'll do everything we can to make it happens x

[Proud Wife]

Where there's a will there should be a way.

Stay strong xxx

[Guest]

Hi,

Sadly I understand your feelings all too well. I didn't want to lose my Dad, but I didn't want him to have any pain or discomfort. What he must have been thinking, I think was pain enough.

He coped amazingly throughout his illness.

I agree with you, this is a completely different grief. We grieve from diagnosis, we know we are going to lose them. Everything becomes more precious. We also try to he so strong for them, that we build up our pain.

Dad wanted to be at home, he never wanted to die in hospital. When we were told the chemo hadn't worked, and that he had broken bones in his spine, he was only supposed to be getting pain management. But sadly he had a severe stroke and lost all movement and speech. I worked hard to get him a bed at a local hospice, but they said Dad wouldn't stand the journey. This is my only regret, I feel I let him down.

As for the end, it is different for every individual. 5 days before Dad passed away, he started to get secretions, so obviously I knew then, he could go any moment. He never wanted to die and he held on. He was already nil by mouth because of the stroke. He was receiving fluids. I don't believe he was in any pain. My main concern was that he would get distressed. He had a syringe driver in place which had medication for the secretions, pain control and for distress. Dad was able to stay awake while I told him what was happening, and with his left arm ( the only part of he could move )he stroked my hair. I put my head on his chest, and he held my head, with some strength as well. A nurse came in and wanted to get by. Dad wouldn't let me go. That evening Dad went unconscious.

I read him the newspaper, and just talked to him about everyday things. He passed away the next morning. I know I did all I could, I just wish I could have saved him.

As for your little girl, I think Sandra's post is beautiful, and I think she is so right. Children adjust and she will probably be the one thing to get you through.

Thinking of you.

Leila xx

[Guest]

Perfect Fifi, just perfect.

We are very lucky as our palliative care team provide 'hospice at home' care and so far every thing has worked well. District nurses, nurse specialists from the hospice and hospice trained carers to come in at night when needed to allow me to sleep. Hospital beds and all sorts of equipment are available and arrive usually on the day of request. I don't know if we are just lucky or if this is the case elsewhere.

Of course we don't want them to give in but sometimes love really does mean letting go...

[shelda]

Oh Ali so sorry to hear that you are at this stage, I can't really comment from mum's experience as we were in a hospice, but when my uncle died at home from cancer the hospice at home team were amazing and in the final weeks provided a bed and nurses stayed most nights I know my aunty found them a god send. Sending you so much love as we all know to well how awful it feels, the helplessness and pain we feel seeing our loved ones suffer like this. Big cyber hugs huni xxx

[alimc77]

Thank you all. I had a good talk with my little girl and she understands that grampa wont be here much longer. It was heartbreaking. I have made her a special photo album with pictures of her and grampa.

my dad is holding on at home. Between carers, nurses and me and my brother we are coping x