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Wish someone would help him


Guest Fifi
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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

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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

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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

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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

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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

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Hi Leila,


It is good your Dad is feeling a bit better pain wise but it would be good for both of you to get some more support really - your Dads comment to the DNs resonated with me Leila about him not needing them as he had you. I completely understand why you want to do that as well.


We didn't have MacMillan nurses (they don't cover my area) but we did have a community palliative care team. For a long time they were short staffed and so not visiting, at least not us as we were "coping" but when we did finally get a nurse, she was super and took such a weight off, including a huge weight off me as I'd been doing so much advocacy for Jonathan. I might be tempted to (in fact, when it was me I did) ring them up and have a chat. Jonathan too was dead against when he was first diagnosed but was won around.


Lots of love


Cathy xx

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Leila this is so hard they weighed my mum when she was admitted to hospital and she is 6.5 stone! I was shocked! I like you would do anything and we are in our own way...we are there for them!

You are doing a wonderful job and your Dad knows that. Sue xxx

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Dear Leila, really sorry to hear that your dad is still struggling, but glad his pain is better. It shines through your posts how much you love him and I really understand your heartbreak. I've been feeling like that for 48 weeks and 3 days, since James was diagnosed and it's so hard to try and carry on working, managing family stuff and just living. I would like to cut down on work, but with family to support financially, that's not possible. You have helped us immensely with James diarrheoa and your advice onSIBO. James has now taken 5 lots of antibiotics and they do work at first although the last lot wasn't so good, however, without your advice no clinician would have suggested this and at least he's had temporary relief. He hasn't put on weight, originally lost 2.5 stones and is sort of maintaining 10 stones, but he is so very thin, with arms and legs like sticks, when just over a year ago he was really fit with muscles and bulk at a slim 12.5 stones.


I also understand your feeling re your GP. James' GP failed to diagnose him, despite losing weight and just kept telling him itwas stress. In the end he paid for a battery of tests privately, including a camera up and down and finally a CT scan, well over £ 3 K, although that's immaterial now, what is so bad is that he could have been diagnosed months before and maybe could have had the whipples, we'll never know. We no longer see that GP, on the day he finally told James and that was a week after his last private CT reported and he had been sitting on the report for days. He said sorry mate it's bad, eat, drink, be merry cos you've not got long and suggested James change GPs. James then had to drive home alone and I often think someone more vulnerable could have done something to hurt themselves and others on that drive, so as you can see we have lost confidence in that GP.

I really understand re Macmillians too, the nurse we got was insensitive, inappropriate and actually made offensive comments, I do intend to complain and have tried to get a different nurse, but apparently she's the PC expert so it's her or nothing and nothing is far preferable. I have tried the local hospice several times and they have even been on the point of visiting, but James has cancelled. Like your dad he says he doesn't need anyone else, but me and it's also all the stuff around dying and he's not ready to think about that yet.

I feel your pain and admire you so much for helping others when you must be run ragged and coping with emotional stress that it is unbearable. Thank you Fiona X

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Fiona, thank you so much for your lovely comment. It really angers me to read stories like yours, I can't tell you how much it disgusts me how they treat James, and everyone else. This is peoples lives, not something menial. It is someones loved one. People just don't care anymore.


I am so pleased that James is getting some relief with the antibiotics. Can I suggest something else? Steak, preferably fillet. I'm not joking. My dad had one, he called me that night and said he hadn't been to the toilet. So I told him to try again the next day, it was the same, he never went to the toilet until the next morning. He then had lamb for dinner, and 10 minutes later, back to the toilet. So he has a steak most days now. It probably doesn't work as well on chemo days though. I think it is worth a try? It does give him quite bad stomach ache though, but it wears off as the weeks go on. It worried him to start with but I believe it was just his stomach getting used to holding food, nothing else.



Nikki,


Pleased you like them. I wasn't sure which to get. I know it is stupid to say, but I hope you and the girls as coping as well as could be expected.


Leila xx

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Dad just called me in absolute tears. He said he is in so much pain, he has never felt anything like it. He said he is at the start of dying.


What the hell am I supposed to do with that information??????


What do I do? I don't know what to do. I don't want my Dad to die. I don't know what to do anymore.

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Leila take a deep breath! If I was you I would ring his GP and ask for an emergency home visit. Does he have a friend or neighbour you can contact?

Try to keep calm , I know it's hard but get on the phone to the GP.

Ring your Dad back and explain you have contacted GP so he knows they are coming.

Stay strong. Sue x

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Thank you Sue. His neighbour won't help, she calls him 'white trash'. His friends have deserted him when they found out about his illness. He has his 'girlfriend'. Dad said I can't call anyone. Nothing can help him and that he just has to wait now. He is still in bed, he can't get out. Julie has a key, I have called her and told her to go round. Not heard nothig since. He is the most stubborn man I have ever known. It is times like this, I wish I had a brother or a sister.


How is your mum?


Leila xx

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Oh Leila I do feel so sorry for both you and your Dad. To be so far away when he needs you is horrible, that's why he needs some support setting up, its so hard with these independent stubborn men!!

Of course you don't want your Dad to die, or to be poorly either, this disease is relentless and its all so bloody scary. I agree with Sue about ringing the GP, if he needs some help.

Did dad have his chemo this week, I know how Trevor felt on his "bad" weekend, and for dad to have this horrible pain as well, its so scary for them.

You are going to have to have a "conversation" with him explaining how much it upsets you that he is on his own so far away from you, and for YOUR peace of mind he will have to have some support in place SO THERE.

I hope he feels better soon, and that he contacts you to let you know, are you able to visit this weekend? sending you a big cyber ((((hug))) sandrax xx

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Hi Sandra,


Thank you for replying.


I am going over on Sunday. I will have to have a chat with him, I can't cope like this.

He had chemo week before last, due to have blood tests this chemo monday. He thinks he is being lied to and the pain is the beginning. I told him that no one is lying to him. He said he must have done something bad in a past life. He is very uoset and very anxious.

He isn't answering his phone, but I am hoping that Julie is with him, and that he hasn't told her not to come round. When he is feeling poorly, he tends to tell people to leave him alone.


I begin to think myself, is this it? I drive myself mad with worry.


Leila xx

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Leila, Join the club, we all think just the same, Trevor is not well at the moment too, didn't want to update the thread yet, as we had had such a lot of bad news then lots of very good news, will update after the weekend sandrax xx

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I have been thinking of you and Trevor. If look forward is the right thing to say, then I look forward to reading about your good news. I know Trevor gets very down, I hope the good news has picked him up.


Leila xx

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Leila I am an only child as well so I know exactly how you feel! I hope things are calmer now. I agree with Sandra you need to have that conversation!

However much he puts up a fight you need to have someone who can check on him every day ... For your peace of mind as well!

My mum was very sick yesterday couldn't keep anything down. I went round this morning and she was ok but I'm just going back now to see how lunchtime went !

Sue x

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Oh, dear, I have missed all this as I've only just come in from work. Leila, I know from experience that there is sometimes awful pain and then it clears with no explanation. I remember from all your posts too that your dad often seems to feel very down and that the end is near. It must be so hard for you but hopefully he will pick up again. Sandra, I am so sorry to hear that things are not good. You hinted at it before and you have been much in my mind. Please don't feel that you can't post bad news just because some of us have good news. And with pc we know that good news rarely lasts so it is just a matter of riding the highs and the lows. Wacky, I have missed you too and think things have been tough for you too. I am thinking of you all this Friday night and sending lots of love xxx

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Hi Leila try and have that conversation with your Dad it would help you so much to have someone who checks oh him. The community pallative nurses are very good here and you can talk to them as well! Would that be an option? There are charities that also offer support you could google them for your Dads area.

Thinking of you. Sue x

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hope your dad is in less pain and you are ok. I can feel the immense love you have for your Dad.

(My Dad has had non hodgkins lymphamoa for 3 years, hes in hospital with a blockage in his stomach, praying its not spread , waiting for the scan results )

Sending you a massive hug

Love Jayne

x

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