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

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Fifi

Re: Wish someone would help him

Postby Fifi » Tue Feb 17, 2015 9:41 pm

I know it is easy for me now, to say don't think about it. But seriously, my Dad has doubled his time. It really does consume your mind. We had a holiday booked for September and cancelled it, because I expected my Dad not to be here. I dreaded Christmas for the same reason. I kept thinking, only so many month/weeks to go. I know you will keep counting down, it's what you've been told and it's imprinted on your mind. I just wish I could make it so you didn't. But, saying this, if I was told another time now, then I would start over again.

Leila xx

Fifi

Re: Wish someone would help him

Postby Fifi » Thu Feb 19, 2015 9:13 pm

Dad is suffering quite badly with pain in his stomach. He said it is below the belly button and central. Going to the toilet used to help it, but not today. He has been 20+ times today so far and stomach pain is quite bad. He said something is happening now. Weight loss is there again as well. Dad says he feels suicidal, as every day is a bad day now. I have told him that he has to tell the oncologist, and that if he tells him about pain, then hopefully he will get a scan.

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Wish someone would help him

Postby Sueoliver » Thu Feb 19, 2015 9:30 pm

Hi Leila it makes me so sad when I read some of these posts! This disease is relentless! Does your Dad have a palliative nurse in the community? Maybe he could talk to someone like that. I really hope he feels better over the weekend. I'm away early in the morning until Monday so will check on posts when I'm back. Really hoping there is some good news on here.
You are a great support to your dad . Look after yourself as well. Sue x

Fifi

Re: Wish someone would help him

Postby Fifi » Thu Feb 19, 2015 9:52 pm

Thanks Sue,

Dad only has the District nurse. The Macmillan nuse asked him where ge wanted to die, so she hasn't been back. He's not really the type of man to 'talk' either, unfortunately. He daren't even tell the hospital if anything is ever wrong, in case they keep him in! He's really going to have to start. I can only do so much. I am hoping he will be offered a scan on Monday.
I spoke to Chris this morning ( the new nurse on here) he was lovely. We don't believe it is pancreas pain, but maybe some kind of dumping syndrome? Its just all so hard, to hear him so low, breaks my heart. I love my Dad.


Have a good break Sue.

Leila xx

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

Re: Wish someone would help him

Postby sandraW » Thu Feb 19, 2015 11:33 pm

Hi Leila,
Sorry to hear you Dad is feeling so down, strangely Trevor too is not too good he has all sorts of pain in his tummy in the middle, then in his side, then lower down, every day seems different. The Macmillan nurse called in last Friday and suggested he take Paracetamol 4 times daily for breakthrough pain, but he has yet to take them 4 times a day, and I am fed up of asking him to take them.
Perhaps you could ring the Macmillan nurses yourself, and explain to them about how your Dad feels and that they had upset him, and perhaps then they could call on your dad again and build up a relationship which would benefit him. I know what you mean about the "where do you want to die" scenario, Macmillan are like that, I think they just try to prepare people, and find out their wishes but if its the last thing people want to hear, then its sooo difficult.
I hope your Dad feels better soon, love sandrax xx

Fifi

Re: Wish someone would help him

Postby Fifi » Fri Feb 20, 2015 9:30 am

Thanks Sandra, Dad won't have Macmllan again, at least not at the moment. It was me who made him have one in the first place, so felt a bit bad.

Have they found out what Trevor's pain is, and what is causing it?

Not heard from Dad today yet, that normally means he isn't very good. He is worried the pain is cancer. This is first pain he has ever had since being diagnosed. Not that it is ever off my mind, but when he is like this, it feels all the more raw.

Leila xx

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Wish someone would help him

Postby nikkis » Fri Feb 20, 2015 11:27 am

Leila,
It is so frustrating for you that because your Dad had such a bad experience he can't get the support that might help him. We don't have Macmillian in our area but the hospice have community nurses. The first one we had wanted to talk about where Paul wanted to die and said a lot of ahhh's, we asked if Paul could change nurses and the 2 we have had since have been fantastic, and have very much been concentrating on living. Both have understood Paul, and realised he didn't want to talk about his emotions.
I am very worried for you both if you Dad is not getting any support, especially if pain is an issue. If he has a good relationship with the district nurse could she find out who else is available? Our district nurses also have a pain specialist in their team, so it might be worth asking about that.
Leila, you are doing such an amazing job, all on your own, and supporting everyone else here, people are lucky to have you in their lives,
Love,
Nikki
Last edited by nikkis on Fri Feb 20, 2015 2:20 pm, edited 1 time in total.

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Wish someone would help him

Postby Slewis7313 » Fri Feb 20, 2015 12:42 pm

Liela, there are some really wise words from both Sandra and Nikki. It is a real shame that your Dad's first encounter with the Nurse proved to be so negative, but I am sure others might be able to strike a positive chord with him, offer real practical help and take some of the burden off you. You have and continue to be a great support for your Dad and others here, so if you are able to follow any of the suggestions, I am sure it would help both your Dad and yourself.

Please take care!

Steve
X

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Wish someone would help him

Postby RLF » Fri Feb 20, 2015 4:53 pm

MacMillian have been great for us, though we've not really delt with a nurse as such just the support teams at the center. Maybe if you advise them to avoid that type of topics, or maybe just a different nurse will handle it differently. You definitely need some support, we all no this is too much to bare on one pair of shoulders! Nikki's idea about a pain specialist nurse is probably the ideal choice for the moment though, if they have one in your team of district nurses.
Rob
x

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Wish someone would help him

Postby Didge » Fri Feb 20, 2015 10:38 pm

Hi Leila, your poor old dad, going through it again. I agree that some kind of pain control specialist must be the next option - hopefully you can find a non-Macmillan one but if not persuade your dad to try a different one. Sandra, my fella is now supposed to take regular pain relief to avoid pain break through. Does he? Does he hell! I never even started trying to get him to do so as I would be banging my head against a brick wall! xxx

SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: Wish someone would help him

Postby SusannaUK » Sat Feb 21, 2015 10:48 am

Dear Leila,

I am sorry to read that your Dad has this terrible pain. I also think that he should have some kind of pain control specialist. My husband had a palliative care nurse from the local Hospice who was always there when we needed. We could call her any time, or if she was not there then someone from the hospice team was able to help us or get some painkiller, prescription etc. For us district nurses didn't work because they never turned up when we needed them, but hospice was always available.
My husband started to feel pain again in September after a relatively "good" summer and as you know that later was found that it was cause by new tumours on bowels. I hope your father's pain is not caused by anything like this but it needs to be found out what causes the pain.

I am thinking of you a lot. You are giving an amazing support to your Dad!

Lots of love,
Susanna xxx

LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: Wish someone would help him

Postby LMD » Sat Feb 21, 2015 10:11 pm

Hi Leila
So sorry to read your Dad is having this pain.

If your Dad won't tell his District Nurse, are you able to speak to him/her just to let them know so they're aware of the situation? Maybe your Dad will contact someone when he feels the time is right for him to do so?

Youre doing an amazing job at looking after and supporting your Dad. Look after yourself too. Thinking of you xxx

Fifi

Re: Wish someone would help him

Postby Fifi » Sat Feb 28, 2015 5:32 pm

Thank you all for your lovely comments. They really mean a lot.

Dad's pain seems to have improved. I believe it was down to his stomach struggling to hold onto food. Kind of like giving a new born child a roast dinner! If Dad has a fillet Steak, he doesn't go to the toilet until the next morning ( unless he has recently had chemo, then it is back to normal ).

Dad also has Sciatica which doesn't help.
He has now lost a stone again, but still has a large stomach. The weight loss is worrying him and making him upset. No matter how much he eats, he can't gain weight. He has been very emotional lately. Cries to me quite a lot. It is all so unfair. Wish I could change places with him.

Leila xx

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Wish someone would help him

Postby Slewis7313 » Sat Feb 28, 2015 10:07 pm

Leila, you really are doing an amazing job with your Father, even with the difficult distances involved. Your last comment about changing places confirms what we can all see....You love him dearly and would do anything for him.

Is his weight stable at the moment and/or is he under weight? I have a really good appetite at the moment, still have chronic diaohrea, but have a really steady weight of 10 stone 10 pounds which is OK for me (I can't put weight on either!). If he is still losing weight after already having recently lost a stone, then that obviously needs looking at. Have you had any joy at all with the District Nurses? They are there to help and should be making your lives easier, not more difficult.

I wish I could offer more assistance, but hope you can get the Nurses involved to help your Dad resolve his current issues (including the emotional ones). Please give your Dad my regards.

Steve
X

Fifi

Re: Wish someone would help him

Postby Fifi » Sat Feb 28, 2015 10:31 pm

Hi Steve,

Yes, I really do love him. It breaks my heart. Pancreatic cancer breaks my heart.

He managed to get back up to nearly 11 stone when he had his chemo break. He is 6ft tall. His appetite is still very good, but weight is slowly dropping off him. It is a very big issue for him. His arms and legs are quite slim, but he does have a large stomach. I tell him it is because of the chemo, using up all of his energy and his calories. Itdoes upset him, and he does question his weight with me. He has always been a slim man though.

I did speak with the District Nurses, they said they would call my Dad. They called him, and he said he didn't need them because he had me! If he ever does get bad pain, and is serious, I will call his GP. My Dad still has the same GP that misdiagnosed him. I hate him so much, I genuinely feel sick to think of him. But, I believe he is feeling the guilt and I would contact him. He does anythingfor my Dad now, and he will even be interrupted during clinic if my Dad calls.

I always appreciate your messages Steve. My Dad thinks a lot of you, and I will pass on your regards.

Leila xx