H3 I'm so sorry you have to go through this. It's heartbreaking. My dad passed away with the same thing although it spread to his liver from his bones. We didn't have a drawn out process, he literally went downhill on the Fri and passed on the Sat night.

The Fri night was bad. My brother and sister took turns sitting with him. I have young children so returned home to get a good sleep in preparation for the next night when I had planned to take over. We never got to and we had no idea he was so close to the end. It had only been 2 weeks since his diagnosis and he had been in great form right up to the Thursday evening. I spoke to him in what turns out to be our last conversation. 

He suffered some pain and was very agitated. We had visits from the palliative care team and the Fri they had to administer the pump of morphine. It's difficult to know if the body processes things esp if it has gone to the liver but Dad couldn't hold down the tablets so it had to be administered intravenously. Dad had been very anti any medical call outs but he actually asked for the pain relief and I remember thinking give him whatever it takes because it was so hard seeing him like he was. We nursed him at home. Do you have any medical support. It's very important to have help. We had the palliative care team ringing and only called out if we needed them. We couldnt have the night nurse on the Fri as it was too late to request their services. We were given one for 2 nights the sat and sun but the nurse had only arrived 10 mins on the sat before he passed.

You cannot do this on your own. Ask your gp what assistance is available to you. I'm in Ireland so not sure about the NHS but you need medical help just so you can let someone do the worrying while you spend the quality time with your dad. There is no need for your dad to be in pain. You need to tell them how much pain he is in. You don't want his suffering to be your last thoughts of him.

 It's one of the most difficult things I've ever had to witness and I pray when my time comes my children don't have to go through this. It's cruel. 

Oh I hear you on the wanting to go home. There were days when I didn't want to visit cos I didn't want to face up to things and dad wasn't in pain at that time. It was more for the anticipation of what was to come and the self preservation, to protect myself from what I was seeing, my dad dying. But I'm glad I pushed myself because the only thing you can do is to be there for your dad. Speak to him, leave nothing unsaid, let him know you're there. That was a great comfort to my dad. 

Thanks for the reply , I’m sorry for your loss - I’m actually in the bedroom keeping an eye on him as he’s restless again tonight , he’s been like this all day . We have palliative care involved and Marie curie who will do a second night this coming Sunday . The GP mentioned about it being too soon to use a driver but I think we’re at that stage or the pain relief he’s on needs to be upped , I’m going to stay here tonight and I’m hoping he’ll sleep but as it is I doubt it . 

My Dads having bad mood swings and when I suggest something he gets upset , agetated and tells me where to go , we’re just trying to help but we can’t get him to listen so we just agree to his terms which we feel on times aren’t in his best interests . It’s all a horrible situation to be in for all of us and god knows what Dad is thinking as he’s very private on times , old school .

Thanks again for the reply it was genuinely nice to see someone help .

Thanks for the condolences.

He sounds very much like my dad. I don't think it's for the gp to dictate things. If you can see your dad needs something stronger, speak up for your Dad. The gp cannot feel your dad's pain nor can he see what you are seeing and going through. Has he been out to see your Dad. Things can escalate quickly. Like with my dad, sitting in the kitchen on the Thursday chatting away and then just woke up on the Fri in a bad way. I was on my way down when my mam rang to say not to bring the children down. She has never once told me not to bring them down. 

My Dad was a bit more abrupt than usual but I'd say that was the pain moreso. The nurse who called out on the Fri was such an airhead. She was sitting in our sitting room emptying her bag out looking for things. Then she'd be like oh I forgot this and I forgot that. Then her phone would ring and she'd disappear into the kitchen to answer it. All the while dad was sitting there asking how long more until he got his pain relief. She was really bad. Then she lost her keys and we were searching all over the place and they were in her pocket. I kid you not! Anyway I digress. 

Oh my dad was the same, very private, very old school. We couldnt tell anyone what was going on not even his family. That was one of the hardest things too,having to keep it all secret. Dad's niece minds my children and I had to go up each day to collect my children knowing I had just left my dad's house after visiting him. Then to have to deal with people's shock at the news of his passing. It was so hard. 

I hate to say it but be prepared and I'm only saying it because I wish I had fully appreciated what was happening on the Fri and Sat when Dad was so agitated.  He was up, then was down. He was actively dying and we didn't fully appreciate what was happening. We were offering him everything and he got impatient at times. He spoke in a whisper that sometimes we just didn't hear him reply.  I wish I had known on that Fri when I left dad that evening that it was his last night. He still had periods of coming to. The Sat not so much. He stopped responding and would pull away from our touch. I read not to take offence to this. 

Just try to be present in the moment if ya get me. It's easy to get distracted and busy yourself with other things, but be there with him. That's the advice I would give you.

Thanks again , it’s 2.15 am and he’s more relaxed as I’ve given him more pain relief - I’m going to ask for a review of his Longtec 5mg tablets as I think he needs a larger dose - it appears they start off low and build on the dosage , well that’s what medicine.org tells me .

I’m dreading the next few days / Weeks as it’s had an effect on my mental health , I didn’t think it would but it’s opened some old issues from many years ago . I know how to get through it all but it’s not what I wanted to face . Again thanks for the chat and I hope your lives are gaining strength and you’ve started to look forward to something down the line .

Hi there. I'm sorry you are going through this. I lost my dad 10 weeks ago to cancer and I too felt I wanted him to pass as I couldn't bare seeing him to tormented. It is perfectly OK to feel like this you must not feel bad. You must speak to your macmillan nurse, you should be assigned one. He shouldn't be in pain like that and it may be he needs a syringe driver to keep him topped up constantly with pain relief. Ask for your care package to be increased and contact Marie curie. They are voluntary and will night sit. They were fabulous for us. It helps give you rest too. I have written a blog on my experience if you think it would help. It's about coping with grief and the r motions you experience. I'll send you the link if you'd like to read it. It's a hard read, but aims to let people know you're not alone.

There is a lot of support out there. Ask for it. Dont be frightened. Wishing all good luck xx

Mandy xx

Hi Mandy 

Thanks for those kind words , we have been in touch with folk , we have a Palative care team which I had to call this morning at 8 am as I felt his pain management last night wasn’t sufficient, I’ve been instructed to double up on his Longtec and keep up with the Oxynorm - he’s a bit agitated at the moment as I’m sitting here with both my folks - myself and Mum have just spoken about how much Dad has done in his life and we wish he would go soon so his suffering stops  . I’d feel happy for him . Again thanks as I’m waiting for the Palliative nurse to arrive 

I'm so glad things are moving for you. 

amandfewtrell.simplesite.com

My blog may help you a little. If I can help with anything, just as xx

Hi H3, 

That's great that you are getting the support you need so that you can concentrate on your Dad. Yes it's horrible that we are forced to think like that but it's only in their best interests. My Dad called it his cure and he told us that with no disrespect to us that he hopes it comes quick. Whilst very difficult to hear, it just shows the suffering he was going through. 

Thinking of you all in solidarity.

Hi Mandy, I've been reading your blog over a few days, slowly getting through it as it's still so raw for me. You put it all so eloquently. Hope you're doing ok. 

Hi All , well things have moved on since last night as Dad is fading away as the medical team have just sedated him for the second time today , they’ve also given Dad pain relief via an injection , he can’t take his tablets any more by mouth  and they say we only have a few days . They plan on supplying a driver possibly tomorrow.

We all have mixed emotions at this point and we’ve informed the family where we can , myself and my brother are here so I’m going to get some rest .

Thanks for the words and I hope your managing .

Regards

Phil