Wish someone would help him

[J_T]

Great news about the scan Leila.

KBO

Julia x

[Guest]

Thanks Nikki and Sandra. Dad was started on Rifaximin and the diarrhoeas consistency still stayed the same, but it was less frequent. Got to about an hour after food, rather than 10-15 minutes. He saw a different specialist last week who prescribed Co-amoxaclav. He's been on that since Friday and it is back to constant again. The specialist thinks dad might have some nerves pressing on his pancreas, and that the next thing is a camera down his throat again. Hopefully they can move them at the same time, don't really know how hard it is to remove nerves.

Thank you Julia, good of you to say.

Leila xx

[jay]

Sending you and your Dad a hug Leila

love Jayne

x

[Guest]

Dad was taken off of Co-amoxaclov as it was making him really bad. He saw the specialist again and he prescribed Colesvelem. It seems to be working. His diarrhoea is now the right colour, and is very thick in consistancy. Every other day he will do pellet sized stools.

He went into hospital last Mondayfor 4 days but was discharged after 16 minutes! They told him they weren't going to mess with these pills, seen as though they seem to be working. They are also weening him off of Codeine.

Dads appetite is still large. He is 11 stone now. So he's put just over 2 stone on.

Because he isn't on chemo anymore, his anxiety is very high. He worries so much. He keeps asking if his blood clots have gone, if the cancer is getting worse. He often asks me when it will come back and what will happen.

Dad doesn't know much about this cancer, as he doesn't have internet. Not so long ago, there was cancer statistics in the paper, and pancreatic was at the bottom of all tables. He said he didn't know that 6 months was the 'average' after diagnosis. He asks a lot about people on here. I try to tell him not to think about when it comes back, and to just concentrate on now, but of course, that's easy for me to say.

Leila xx

[sandraW]

Hi Leila, Good to hear you dad is doing well, what a fantastic weight gain,and at long last it seems they have sorted his diarrhoea.

Its hard not to worry, when they are not on treatment, but he should get even stronger, without the "poison" as Trevor calls it. Tell him to try not to worry, and stay positive,I do think positivity helps, and he is doing so well now take care sandrax x

[Guest]

Thank you Sandra. He is doing so well, I am incredibly proud of him. I really never thought he would be here now. I am very lucky. I tell him not to worry, and to try to calm down. He always wants to know if his blood clots have gone, and if the cancer is coming back. He has been making silly mistakes at home, and he thinks it's the cancer. I told him it is anxiety. I can't get him a scan any earlier than it is (8th December). It pains me to think that he is sat at home all alone, thinking all he is thinking.

Leila xx

[Guest]

I wonder. Does anyone know if nuts are ok to eat? He desperately wants some nuts. The dietician told him no, because they are hard to digest. He has asked me to ask here, please.

Leila xx

[nikkis]

Hi Leila,

Our food policy is Paul learns what agrees with him by trial and error. If something has a bad effect, he then decides if he wants it enough the next time to put up with the consequences. For example we went out for a Thai meal recently. He knows spicy food gives him more pain and diarrhoea, but decided it was worth it, but it's not something he would have too often.

We have never been told there is anything he shouldn't eat, and we have seen ( it feels like) half the dietiticans in the South East! I would have thought nuts would go straight through your Dad, probably making his diarrhoea worse for a bit.

Best wishes,

Nikki

[Guest]

Thanks Nikki,

Sorry, only just seen this post now for some reason. So pleased Paul is able to eat out, that must be a nice pleasure for him.

Thank you for replying.

Leila xx

[Guest]

My dad is so depressed. He is down all the time. It's all so very horrible. He keeps telling me that he can't enjoy food, because anything he eats makes him go to the toilet. He can't enjoy alcohol because he has to take tiny sips, or that makes him go to the toilet. He can't even drink water, as that makes him go to the toilet. All he can do, is wet his lips, literally.

He can't go out to see his friends, because he needs a toilet close by. He said this isn't his life. He said he used to have a good life, that he doesn't like this one.

I am worried about his state of mind and where it will take him.

He's all on his own. In the house, day in day out, all on his own.

He says they will never sort his diarrhoea, so he will never get a chance to live his life. Sadly, I have to agree with him now. They cannot stop the diarrhoea. They've told him as such. I am desperately sad for him and his situation.

It is all so unfair. Symptom wise with the cancer, he is very lucky and doing very well. He cannot appreciate this though. He's trapped indoors.

He has the appetite of someone who is 20 stone. Yet he can't even eat in the house, let alone go out for meals, which he despery wants to do.

[sandraW]

Sorry to hear about your Dad Leila, I think we all hoped the doctors had finally sorted out the problem for him once and for all. It must be very upsetting for you as I know you do not live near by, I really don't have any advice for you, sorry. I am glad to hear though that he has no other symptoms,of this wicked disease, it is all so worrying, Trevor seems to be slowly getting more tired and even though he is still eating well at meal times, his appetite is not as good as it used to be. Thinking of you love sandrax xx

[LMD]

Dear Leila

Massive hug for you

Xxx

[jay]

Thinking of you both Leila

x

[Slewis7313]

Leila, I am really sorry to hear this is again an issue for your Dad. Whilst the weight is ok, I can sympathise with the need to know where the hearest loo is, but it is obviously much more of a problem for your Dad at the moment. I know you are both very experienced with what helps (and what doesn't), but am personally managing with the old Imodium / Codeine combination. Other than that, I wish I could offer more practical advice, but unfortunately cannot.

I do however hope the condition improves and that he can get back some semblence of a social life.

Thinking of you both!

Steve

X

[J_T]

Sorry to hear your dad is suffering again. I wish I could offer some advice but sadly I can't. I'll just hope that things improve for your dad and quickly.

Julia x

[Guest]

Thank you all for your lovely comments. They are all appreciated and mean a lot.

Dad is still very down. He says he hates his new life.. He went for a coffee one day last week and it just got him down. He wanted to order food but said he was scared and had to wait untill he got home to eat. He is incredibly tearful at the moment, which I just cannot describe how that feels to me.

He had his last CT scan last Monday. We get the results tomorrow. I am going with him. I am very scared. He hasn't had bad results since being diagnosed. He hasn't had chemo since August. I am hoping with all my heart that he gets good results and he can sort of enjoy christmas. I really don't know if his state of mind can cope with bad results. He is just so depressed. It hurts me so much, to think what must be going through his mind. I just love him so much and I don't want this for my wonderful dad, I really don't want this.

Leila xx

[LMD]

Hi Leila

Good luck tomorrow.

Thinking of you and your dad and sending you lots of love....

Xxx

[Didge]

Leila, will be thinking of you tomorrow - and your dad xxx

[sandraW]

Hi Leila, fingers crossed for you and your Dad tomorrow, take care sandrax

[Guest]

Thank you for your kind wishes. Unfortunately it didn't go well.

The tumour on the pancreas has grown and he has new spots on his liver, all about 33mms. They weren't particularly worried about his pancrea, bit they are about his liver. The doctor looked straight at me dad and said 'it's progressing now'. Will never get that out my mind. They want to start him on chemo as soon as possible. We are waiting to hear when he need his PICC line fitted again.

He will be having Folfox which I know nothing about. I thought this was the same as Folfrinox, but they said it is different. I am going to be the one that changes the drip after 48 hours. Do I need to quit work to do this? I work on a 3 week part time rota. I work 1 Friday in 3,and I believe Friday will be the chosen day. They did tell us all about but I took nothing in. Do I need to do this every Friday? If I stay at work, and it is my working Friday, can it wait until Saturday morning to be taken off? I don't mind leaving work, but had hoped to stay a while longer.

I am completely devastated hearing this news, but I stayed calm amd confident for my dad. Dad cried when we got home and we hugged. He said he was crying because he didn't know how many hugs we have left. He is prepared for chemo and will take whatever is expected of him.

What dad did say, which kind of makes sense, is - why does he look, and feel so well, when he is so ill? He still has no pain, or feels unwell.

Any advice on this chemo would be greatly appreciated.

Leila xx

[Slewis7313]

Leila, sorry to hear the news but it is good that they will be restarting chemo as soon as possible. The name Folfirinox is a breakdown of the various drugs as detailed below. I therefore believe that Folfox is the same thing with Irinotecan removed.

FOL = Folinic acid (also called leucovorin, calcium folinate or FA)

F = Fluorouracil (also called 5FU)

Irin = Irinotecan

Ox = Oxaliplatin

Hope this helps, but I don't understand what is involved in 'changing the drip'.

Please give my regards to your Dad and wish him luck with the treatment.

Steve

X

[Guest]

Thank you Steve for the information.

I will pass on your regards to my dad, he will appreciate it.

Sorry, it's not a drip ( my head is complete mush at the moment). They said he will have chemo at the hospital and then attach like a bag, plastic tube to his PICC, she did show it us, and then go home with it going into him for 48 hours. I then take it off and flush as before.

Leila xx

[Didge]

Hi Leila. Sorry it was not the news you were hoping for but good that your dad still feels well. My fella has a port in his chest rather than a picc line in his arm. Chemo is every two weeks and he has to disconnect the tube after it has finished which is after 48 hours and flush the tube. He finds it easy to do - I don't know if it is the same procedure if it's in your arm but I would think it equally quick job, done in a couple of minutes. I don't suppose it would make any difference waiting for a few hours but you would have to check that with someone who knows more about it. xxx

[LMD]

Hi Leila

Sorry to hear the result wasn't as good as you'd hoped for... I don't know anything about Folfox but will hope and pray it does the job and gets working asap.

Well done for 'staying calm and confident' for your Dad - It must be comforting and reassuring for him. Sending you a huge hug. You and your dad are in my thoughts. Keep posting xxx

[Guest]

Thank you Didge and LMD,

I din't really have anything to post, so just thank you for replying. I'm completely numb. I know I should be grateful he feels ok, and that will chemo will start as soon as, but, to see his face, to see him upset, it really breaks my heart.

I have to go work later and I don't know how to do it. There are a few young girls there, that treat me as their Agony Aunt, even now. I can be texting my dad and they still don't take a breath. I just want them to stop. I want to go to work, do my job and come home. Or is this selfish on my part?

I just want to see my dad. I really don't know how people on here cope with their lives. They all have more to do in their life than I do, and they just get on. Nikki springs to mind, she just seems to get on with her days. I don't have kids, and right now I am pleased, I couldn't do it. Some people are just so amazing and brave to get through each day.

Leila xx