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Wish someone would help him


Guest Fifi
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Fingers crossed for tomorrow for your dad. I think it is going to be a tough week for a lot of us on here. We are at the hospital Tuesday for scan results. I'm preparing myself for bad news, but you just have to pick yourself up and plan the next approach! xx

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Thank you Didge and Susanna. How are you coping Susanna and how are the boys? Please let us know the scan results on Tuesday Didge?


Dads hospital visit went well. Bloods are all ok. Chemo cycle 3 on Wednesday.


Leila xx

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Hi Leila,


Good news about Dad's bloods, he will feel better knowing he can have his treatment on Wednesday.


Susanna, lovely to hear from you hope you are all doing as well as you can, please let us know.


Didge, fingers double crossed for Tuesday for you both, just lets hope the news is better than you expect it to be.


take care all love sandrax

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Dad's chemo seemed to have gone well today. His diarrhoea hasn't got bad yet, normally it does as chemo is being administered. He has gone very quiet though, so assuming he has gone to bed.


Also, just wanted to post that one year today, Dad was diagnosed and at stage 4, with only 6 month life expectancy.


Leila xx

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Glad to hear the chemo seemed to go well Leila. Also a great anniversary, proving some of the experts wrong with life expectancy. I hope your Dad continues to do well for some considerable time to come, though I know it has not been easy for either of you!


Take care!


Steve

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PCUK Nurse Dianne

Hi Leila,


I wanted to say well done on supporting your father through this journey, amazing that a year has passed and I am sure your other 'forum family' along with yourself recognise that this is a very difficult journey. I think it is wonderful that you have highlighted the positive outcome for your father of being here way past the time that was told to him in the first instance. This is so important for people to hear as we are now hearing more frequently of better outcomes than you may have been told initially.


May I also say congratulations to you too Leila, it is wonderful to see you as a respected 'forum member' and the way you and others support each other. I think this is the amazing aspect of the forum that you have all built a close knit and supportive community.


Dianne

Support nurses team.

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Good news about the chemo. A great anniversary Leila! This journey isn't easy but you are a brilliant support to your dad. I support my Mum as well so I know what a journey we are on. This forum is fantastic and it makes me think I know you all and can rely on everyone for wise words and support. Couldn't be without it!

Love Sue x

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Leila, that is great, what an achievement, double what he was given that will help so many people who read on the forum and are in despair at what they have been told. Glad too that the chemo went ahead, I hope his diarrhoea is not too bad and that he isn't too tired, you certainly are a wonderful support to your Dad and I am sure he appreciates you so much, take care sandrax xx

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Hi Leila


I just logged onto the site today, first time for a little while and am so pleased to hear your latest news.


I can't believe it has been a year either!


Keep on keeping on


Cathy xxx

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Thank you everyone for your supportive words. When Dad was told he had 6 month, I kind of went onto countdown, thought that by August I wouldn't have my Dad anymore, but I do, and I am grateful for every day. Every day is precious.


Dad doesn't think he will have chemo next Week. He said he knows when his bloods are low because his nose bleeds. He said he doesn't think his body can handle it.

He called me earlier to say he wants to talk to me about money on Sunday. I think he is going to tell me to transfer it all. I hope not. He thinks like this though when he is down. Compared to how he could be, he is very well. I'm not just saying it, he really is like RLF has said, an inspiration. It still really is the diarrhoea, that is his only symptom. He hates spending any money from his bank, he keeps telling me that I have things to pay for when he's not here. Funeral, house clearance, bills. I would rather worry about that when it happens. I want him to spend the money himself. I know he can't go out and spend it like it should but anyway, I want him to have it.


Sorry, ranting away. It's just so hard, as you all know.


Leila xx

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Hi Leila I think I countdown as well we were told 8-12 months and we are on month 9 ! I find it very hard to get beyond that thought! I suppose they do have all sorts of thoughts going around in their heads I can sort of understand that they want everything to be easy for us!

Your right it's hard, very hard!

At least we can all support each other. Sue x

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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

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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.

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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

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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

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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

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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

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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

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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

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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

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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

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