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Wish someone would help him


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Hi Leila,

I am so sorry to hear about your Dad's scan results, it must have been such a horrible day. You and your Dad still sound like you have lots of fight in you, however low you may feel, and keep it in your mind that many people here have had really good results with Folfox, especially, I seem to think, on liver secondaries.


It sounds to me that those girls at work see you as the strong one, who copes with everything life throws at her, and I think you are doing an amazing job, keeping working whilst being there for you Dad, you come across as anything but selfish. Believe me I have days when all I can do is feel very sorry for myself!


Take care, and remember when you get those really, really bad days, when all you can do is cry, that the next day is never as bad!

Lots of love,

Nikki


Ps when Paul had his last chemo the pharmacist was telling us that that a patient she had seen was on a new drug for diarrhoea called Prucalopride, which had amazing results. Paul can't have it because he has had bleeds, and it's a long shot whether your Dad would be able to, as for some reason they have only done trials on women, but Paul wanted me to mention it to you, just in case.

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How are you today Leila? How is your Dad?

It must be so difficult to stay focussed at work. There's nothing selfish at all about just wanting to go to work and come home again without 'interruption'. It's totally understandable that you just want to be with your Dad. From what ve said in this forum you are doing a fantastic job caring for and looking after your Dad. I hope you are looking after yourself too? ...

Thinking of you and your dad xxx

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PCUK Nurse Jeni

Hi Leila,


Sorry to hear this news about your dad and the recommencement of chemo.


Steve Lewis is right, as always, Folfox is Folfirinox without the irinotecan, so 5FU, oxaliplatin and Folinic Acid (this is a vitamin, not a chemo).


Regarding the removal of the pump, this is a pump which will be attached to his line, and delivers the chemo (5FU) over 48 hours, via a vacuum device. You need to be properly trained as to how to do this Leila, as the line leads into his large veins, and you need to use proper aseptic technique etc....to keep everything sterile. Please do not attempt to do this without being trained at the chemo unit first - they should show you how to do it, then let you do it in front of them before you are doing it alone.


Once you have learned how to do it, it will take about 15 mins maximum to detach the pump and flush the line through.


Kind regards,


Jeni.


(Ps - you know where we are should you need us).

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Thank you Nikki, your words were so kind. Needed them yesterday, believe me. Please say thank you to Paul. Good of him to think of us, have sent an email to dad's oncologist.


Thank you Jay, we need hugs right now.


LMD, thank you for posting. I think it's amazing how you can still post to others when you're going through such pain yourself. I really do appreciate it, thank you. Dad is either very down, or very angry. He keeps asking me when he's going to die, then he cries and then he ignores me. He's currently very quiet and won't answer my calls. He lives alone and I can't stop thinking about what he must be thinking to himself and how he's dealing with it. I'm not coping much either, being at work today, and listening to everyone and their problems. Someone broke a nail and wanted to show me, I just can't really care about all that. Maybe I'm just envious. I'm going through so many emotions, sadness, anger, guilt. I just don't want this for my dad, he's just not a strong man. I just think of there all on his own and being upset.


Leila xx

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Leila,


Sorry for not replying earlier, I feel so much for you and your Dad, being away from him must be so hard, when all you want to do is be able to give him a big hug. Trevor was very very down when he had to go back on treatment, I always say this news is, in a way,a bit like a bereavement, you have to come to terms with it, work it through, before you can pick yourself back up and continue the struggle or fight, whatever you want to call it. I try to tell Trevor that we have to be grateful for every single day, as so many have lost their battle. Having said all that, I had a terrible time a couple of weeks ago, when every silly little thing upset me, I cried buckets that week, over such stupid things, but it finally passed and I picked my positivity up again. Your work colleagues seem a little selfish to say the least, but it could be that they have never had to deal with this kind of thing before, so just don't know how to give you the support you need.

I sincerely hope your Dad copes well again with his treatment, and that you get to spend time with him over the holidays.

I know you will ask about the drug Nikki mentioned, so lets hope that finally your Dad gets his problem sorted, he must be fit otherwise he wouldn't get the chance for Folfox as it is a hard regime, but Trevor coped with it well. They are probably not giving your Dad the full Folfirinox as the Irinotecan causes griping stomach pain and can cause diarrhoea, which is the very last thing your poor dad needs. I hope you have the best Christmas you can have, and that your Dad starts his treatment soon. take care sandrax XX

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Hi Leila

Sending you a virtual hug. It's so tough going through this ... You really are doing your best for your Dad, though, and he knows that. People at work mean well, no doubt, but they just don't fully comprehend the intensity of everything that's going on in your life. I'm not surprised you feel a whole range of emotions.... (You're allowed to!)


Take care Leila - look after yourself as well as your Dad. I am thinking of you both xxxxx

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Hi Leila


I am so sorry that the disease has progressed a little. It is a good sign that your Dad is well enough still to restart chemo.


Jonathan's last cycle of folfironox had the oxalyplatin dropped.


Don't worry about flushing the line and disconnecting the pump. I used to do this and it really is easy to do once you have been shown - it takes only a few minutes and means your Dad won't need to rely on nurses visiting or needing to go into hospital for them to do this.


I know it's tough but you are doing a great job. Your Dad must be so proud of you.


Cathy xxx

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Jeni, thank you, I am going to the hospital twice in one week to be shown how to do it.


Sandra, thank you, your post made me realise that I am not alone with my emotions. Sometimes I think I am. All the tears, anger, anxiety and frustration, sometimes all at once and I just don't know how to deal with it. It can be so hard. I think your trevor is a little like my dad with their feelings. Though wheras Trevor has his shed, my dad just doesn't communicate. I try to pick him up as best as I can, but I doubt nothing I say can take dads thoughts away. They say dad is fit enough to have chemo, though from reading on here, I know Folfox is quite tough, which does worry me. The nurse said not to worry if it is too hard, as they have other treatments up their sleeve. What does Trevor do when he's down? Is there anything you can do, which picks him up a little? I hope you both have a good christmas too.


Thank you Didge, how is your partner doing?


Nikki, I emailed dads oncologist. He said that dad can't have it as he is on too much other pills. He said it is fairly new and that he doesn't want to risk taking him off everything else ( not that anything else works). He said it can also cause diarrhoea. I am going to get in touch with Jeni/Dianne and see if they know anything about it and then contact the hospital again if necessary.


Thank you LMD. I do appreciate your posts. I am doing all I can, sometimes I feel I could do more, but maybe I can't. Guess I just want to cure him. I forever search the internet looking for help. What are you doing for christmas? I don't know the right thing to say here, I want you to enjoy it but you more than likely won't, I just can't imagine. I'll be thinking of you and I hope you remember some happy christmasas that you spent with your dad.


Thank you Cathy, I have already been shown how to flush but never actually did it for my dad. I will try to reply to your email this evening.


Leila xx

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My poor dad, he is so worried about going back on chemo. He is having his PICC line fitted on the 5th January. He wants it, he's just very anxious about it all. Yesterday he called me to say his back, just above his hips, is really hurting him and he can hardly bend down. He said he doesn't think it is cancer related because it would have come on gradually? He says it's just a bad back, and that he used to get bad back and that it will just go. Does pain come on gradually, or does it come full force? He's also got a bad chest, he's been to the doctors this morning and he's given him antibiotics.


We are going tomorrow for christmas. I can't tell you just how much I am looking forward to it. I've missed him so much. I just hope he is well enough to enjoy the day.


Leila xx

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Thanks, Leila. He is not too bad, restarted chemo last week after 4 week break because of low platelets. I am sure just be being there with your dad will cheer him up. And I too never cease looking on the internet for other things which will help. No harm as we know it is officially incurable. I don't know about pain - I think sometimes it can be sudden. We've had several scares but then the pain has cleared up so don't know what to think! Hope you manage to enjoy your time with your dad xxx

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Leila, I am glad that you are with your dad for Christmas, I hope you have the best time you can while worrying about the forthcoming treatment. I think every pain they have we all worry over too, we are good at that, aren't we, worrying that is. take care and enjoy your time together sandrax xx

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  • 2 weeks later...

Thank you all for replying, as always, it means a lot.


Christmas was lovely and I loved being with my dad, it meant the world to me.


Dad goes to the hospital on Monday for his PICC line to be fitted again. He starts chemo on Wednesday. I will be going with him, for the nurses to show me how to take off the chemo. He has Sciatica in his back, and sadly he also has pain in the middle of his back from the tumour. Think that is getting him down, as it is a constant reminder for him.

He cut his finger on Thursday and he couldn't get it to stop bleeding. I gave him some advice over the phone and all went quiet, so I gathered it had stopped. He called me yesterday morning to say it was still bleeding and dripping from his finger. I was annoyed with him, I can't believe he never went to the doctors to get them to stitch it or something. He said he wanted to wait for me to do it, as I'm better than the nurses! If I weren't going yesterday anyway, I don't know what he would have done. Anyway, I cleaned it up and bandaged it up, and gave him a talking to! He can be so stubborn at times.


Leila xx

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Hi Leilla


Really pleased to read that you and your Dad had a lovely Christmas.


Sorry to hear your Dad has pain though - Hopefully restarting the chemo will help with this? Good luck with the hospital appointment.

xxx

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I hope his chemo goes without a hitch, and that it helps the pain.


RE: his lower back pain, well when im examining someone for their pain if the pain is made worse by movements like bending over or twisting then its usually mechanical pain. If that doesnt make it worse it can mean its from something else. Obviously that's not set in stone, but it's a tool we are taught to help in our diagnosis. Carl's shoulder pain isn't affected by movement at all so I kind of knew it was something a little more sinister, even though I tried to convince myself it wasn't.

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Thank you RLF, that really does make a lot of sense. Dads lower back pain was mechanical, unfortunately the pain in his upper back isn't, but very thank you that it isn't two places.


Thank you for the advice, will keep that at the front of my mind from now on.


Leila x

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Well, Dad had first cycle of Folfox today. He did really well bless him. I have never been with him when he has had chemo before, and to be honest, I found it quite tough. He never experienced any sickness of anything during.


The nurse showed me how to remover the infuser and flish his line, and I will be doing this Friday. When they took his bandage off, it was bleeding quite a bit. They said it was because of the Fragmin. The hole where is PICC line is seems quite large conpared to last time. That was snug around it. It bled again when the nurse replaced the plaster. I do feel concerned about charging this, with all the blood round it, as I don't want to cause it to bleed again.


We went home separately and he called me when he got home. He said his mouth amd gums were very sore and his hands went numb and tingly when he washed them. I told him about Steve getting this, so he knew about that, and not to be worried. I didn't expect him to get this so soon though.


Will see how is tomorrow. Feel very proud of him for what he is going through and his continuing fight.


Leila xx

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Thank you Cathy.


Dad still seems to be doing pretty well. He said his mouth hurts the first time he starts eating but goes as he carries on. He feels quite tired also. I was expecting him to be quite poorly, but he is doing so well.


The PICC line is quite worrying. He had that put in on Monday, and it is still bleeding today, Sunday. I cleaned it up on Friday and you could see the blood glistening. The sticky bandage doesn't help and I think this contributes to causing it to bleed. It is making his arm ache as well. Guess it is the down side of having Fragmin, I just didn't expect it to be bleeding this long.


I also emailed Dads oncologist on Friday to ask if he tested Dads CAa19-9 number recently. I had expected it to go up, probably to around 2000, which it was when Dad was first diagnosed, but not to 27,336!! I wish I never found this out while I was with my Dad as it really upset him. I just never imagined a number so incredibly high. Guess this means it is more active than before.


Leila xx

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Hi Leila


Well, I know tumour markers aren't an exact science.. they can be raised by other things too (an infection for example) but let's hope once chemo starts it will be reduced again quickly.


Take care


Cathy xxx

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Dad has been extremely bad with diarrhoea since he started Folfox. They told him it would constipate him but his diarrhoea is worse than before.

I called him this morning and I didn't reconise his voice. He sounded drunk, weary and old. He said he was going to the toilet every ten minutes until 4.30 this morning. He's already lost half a stone, don't know how much he lost last night.


I am so worried, no one seems to help him, no one can stop or evern help his diarrhoea. I hope I am wrong but I think Dad will give up. The mental, physical and emotional suffering the diarrhoea alone has/is causing him is just too much for him.


Leila

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