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User
Posted 12 May 2017 at 20:46
Hi everyone,

My dad is currently on slow release morphine morning and night which is topped up with Oramorph. The nurses suggested paracetamol and ibruprofen too. Is there anything else I can ask for because he's in agony, absolute agony. He is paranoid about becoming a zombie (thinks this is a blip and he will get better like a broken leg). Is there other stuff we can ask for which will help with the pain but won't make him sleep. He's a strong proud man and it's frightening to see how much pain he's in.

Thanks

Bee

User
Posted 13 May 2017 at 01:30

That is a question you need to ask the Macmillan nurses tomorrow but the fact that he isn't eating would worry me - although being in pain tends to make people not want to eat. As I said on your other thread a couple of weeks ago, whether this is tumour flare from the abbi or dad is coming to the last stages you are coming to a time when you must say the things that you might otherwise regret not saying in years to come, and somehow (perhaps with the help of the nurses) you need mum to understand that if dad is suffering she must call for help even if he wouldn't be very happy about it as he may not be able to make the best decisions for himself. And if you haven't already done so there is going to come a time when you all need to know what dad's preferences would be for end-of-life care - my guess is that he would like to stay at home if possible but some people would prefer to go to a hospice for example. In my family we have always talked very openly about these things early which makes planning, getting a care package in place and just generally coping easier on everyone when the time does come.

Edited by member 13 May 2017 at 01:32  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 May 2017 at 07:11

Originally Posted by: Online Community Member
Update: called Macmillan nurses and they said my dad had discharged himself from their care weeks ago

Oh Beebee, I'm so sorry.

I feel that you and Mum are going to have to explain to Dad that his inability to accept help from some medical services is causing huge distress to you and Mum. Maybe then he will be able to reconcile his wish to be left alone with his love for you and his desire to protect you and not cause you pain.

David

Edited by member 14 May 2017 at 07:13  | Reason: Not specified

User
Posted 14 May 2017 at 15:13

Hi Beebee

My heart goes out to you... agree with David that you and your mum might need to put some pressure on your dad to accept help for your sake rather than his. If he can be persuaded to try a syringe-driver 'just to get things on an even keel' that could manage the pain but on a lower does than he is using currently because it is absorbed immediately and provides constant small doses of whatever medicines he's on (it can deliver a cocktail of options at the same time). So the lower dose also makes it possible that he'll feel less 'zombified'.

It's a bit of a pain to carry it around, Tony used a small canvas shoulder bag (and grumbled a lot!) but it was really effective. The paracetamol (1000 four times a day) and Ibuprofen (400 three times a day) were used alongside the syringe driver. Tony has the liquid painkiller too but didn't need it while on the syringe driver. District nurses came every 24 hours to refill it.

Hugs

Eleanor (Ruth)

User
Posted 15 May 2017 at 01:48

Originally Posted by: Online Community Member

We had a good conversation yesterday and without being blunt and he finally seemed to "get" this isn't a broken bone. The doctor who came then made out that this was all muscle spasms so my dad thinks that cancer is under control and this is all due to pulling a muscle. Is this all muscle pain and nothing related to cancer? If so, should everyone be on morphine if they pull a muscle?

Two three letter acronyms come to mind: FFS and WTF.

Re the supplements, I've got no experience of them so have no opinion. However, logic says to me that if he's not eating anything else then supplement drinks are better than nowt and I'd put that statement directly to the Roy Castle doc and ask if she agreed. If she didn't agree I'd then ask her whether starvation was a recommended dietary option.

Sorry, I'm feeling a bit pedantic at the moment, yesterday I had to deal with a couple of medics to whom the word logic had no meaning.

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User
Posted 12 May 2017 at 21:42

hi

the nurses you mention are they hospital or Mcmillan nurses, I am on what been told is some strong pain killers but one of the side effects is they can make you sleepy, abstral to be taken when breakthrough pain hits, 80mg oxycodone twice a day, 225mg Pregabalin twice a day, all sorted by Mcmillan, was on Oramorph at one point it lost its affect, hope this helps

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 12 May 2017 at 21:56
Thanks for response. Macmillan nurses are coming but my dad says he feels great etc and won't admit the level of pain he is in. I'm thinking if I can ring them and give them some idea of meds to take that are relatively non-drowsy then we can leave my dad out of the equation. He is the most stubborn patient....
User
Posted 12 May 2017 at 23:11

It would be a good idea for you to tell the nurses that dad is playing down his pain levels when he speaks to them, they are used to dealing with these kinds of issues and will know how to approach him about it. I don't think they will go along with discussing treatments with you without his knowledge - health professionals are very focused these days on patient voice and patient wishes. They will also know how to help dad (and perhaps you and other family members) be realistic about the situation he is in. In late stage cancer there can be a constant tension to get the pain down without the person being asleep all the time ... but if it can be done, the Macmillan nurses tend to be the best at it.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 May 2017 at 23:24
I've just had a call from my mum saying he's in agony and nothing is working. He crawled up the stairs on his hands and knees. I'm completely devastated! Naive I know but I never knew cancer was so painful!
User
Posted 13 May 2017 at 00:43

Has she phoned 112 or 999? Where is the pain?

Some people have a very calm and peaceful end stage and eventually quietly slip away while others have terrible pain and distress. But your dad's medics didn't seem to consider him to be at the end stage yet so you may have to help mum to go against dad's wishes and call emergency services, particularly as he has previously had SCC I think?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 May 2017 at 00:59
He did this about a month ago and we thought was the return of SCC but he hasn't lost any feelings/strength etc. It's a pure band of pain all over his entire back. My mum won't call in case it upsets him but I've told her to keep an eye on him and either call and ambulance or the nurses. My husband is working tonight and I have young children otherwise I'd be there. Is this the end? his pain is multiplying by the weeks..,,
User
Posted 13 May 2017 at 01:30

That is a question you need to ask the Macmillan nurses tomorrow but the fact that he isn't eating would worry me - although being in pain tends to make people not want to eat. As I said on your other thread a couple of weeks ago, whether this is tumour flare from the abbi or dad is coming to the last stages you are coming to a time when you must say the things that you might otherwise regret not saying in years to come, and somehow (perhaps with the help of the nurses) you need mum to understand that if dad is suffering she must call for help even if he wouldn't be very happy about it as he may not be able to make the best decisions for himself. And if you haven't already done so there is going to come a time when you all need to know what dad's preferences would be for end-of-life care - my guess is that he would like to stay at home if possible but some people would prefer to go to a hospice for example. In my family we have always talked very openly about these things early which makes planning, getting a care package in place and just generally coping easier on everyone when the time does come.

Edited by member 13 May 2017 at 01:32  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 May 2017 at 07:31
We were going the steroids with the abbi would increase his appetite but no. I'm going to ask the nurses about some supplements drinks he can take. I feel like if this was somebody else, they would bed bound but he is so incredibly proud. However he is glued to his orthopaedic chair and heartbreakingly can't wave me off at the door anymore. I hope this is a tumour flare I really do. Thanks Lyn x
User
Posted 14 May 2017 at 01:03
Update: called Macmillan nurses and they said my dad had discharged himself from their care weeks ago. He assured them he was fine and disnt require help. He was almost out of Oramorph so had to call 111 who, despite the delay with the cyber hack, got a doctor out who prescribed a higher dose of the slow release morphine. He seemed better today but still visibly in pain and go pupils are like pinpricks. I suggest food supplements for his appetite and the doc said just to eat little and often! ..
User
Posted 14 May 2017 at 07:11

Originally Posted by: Online Community Member
Update: called Macmillan nurses and they said my dad had discharged himself from their care weeks ago

Oh Beebee, I'm so sorry.

I feel that you and Mum are going to have to explain to Dad that his inability to accept help from some medical services is causing huge distress to you and Mum. Maybe then he will be able to reconcile his wish to be left alone with his love for you and his desire to protect you and not cause you pain.

David

Edited by member 14 May 2017 at 07:13  | Reason: Not specified

User
Posted 14 May 2017 at 15:13

Hi Beebee

My heart goes out to you... agree with David that you and your mum might need to put some pressure on your dad to accept help for your sake rather than his. If he can be persuaded to try a syringe-driver 'just to get things on an even keel' that could manage the pain but on a lower does than he is using currently because it is absorbed immediately and provides constant small doses of whatever medicines he's on (it can deliver a cocktail of options at the same time). So the lower dose also makes it possible that he'll feel less 'zombified'.

It's a bit of a pain to carry it around, Tony used a small canvas shoulder bag (and grumbled a lot!) but it was really effective. The paracetamol (1000 four times a day) and Ibuprofen (400 three times a day) were used alongside the syringe driver. Tony has the liquid painkiller too but didn't need it while on the syringe driver. District nurses came every 24 hours to refill it.

Hugs

Eleanor (Ruth)

User
Posted 14 May 2017 at 23:15
Thanks guys. His slow release morphine was at 5mg twice a day a month ago which was increased to 10mg. The doc yesterday increased it to 30mg and said it's a really low dose. So far, it's not had any effect and the evening flare ups are still occurring. He's still topping up with Oramorph but at least he's admitting directly to me about his pain. I've explained the need for Macmillan nurses and he iinsists nobody mentioned discharging him when he said he was fine.

We had a good conversation yesterday and without being blunt and he finally seemed to "get" this isn't a broken bone. The doctor who came then made out that this was all muscle spasms so my dad thinks that cancer is under control and this is all due to pulling a muscle. Is this all muscle pain and nothing related to cancer? If so, should everyone be on morphine if they pull a muscle?

Bee x

User
Posted 14 May 2017 at 23:19
Doctor also pooh poohed my suggestion of supplement drinks that somebody on her suggested to compensate for his lack of appetite. My dad has always been overweight with a belly and she said they're full of sugar and he doesn't look like he needs it! She worked for the Roy Castle Foundation so obviously has experience with cancer but does everybody agree?
User
Posted 15 May 2017 at 01:48

Originally Posted by: Online Community Member

We had a good conversation yesterday and without being blunt and he finally seemed to "get" this isn't a broken bone. The doctor who came then made out that this was all muscle spasms so my dad thinks that cancer is under control and this is all due to pulling a muscle. Is this all muscle pain and nothing related to cancer? If so, should everyone be on morphine if they pull a muscle?

Two three letter acronyms come to mind: FFS and WTF.

Re the supplements, I've got no experience of them so have no opinion. However, logic says to me that if he's not eating anything else then supplement drinks are better than nowt and I'd put that statement directly to the Roy Castle doc and ask if she agreed. If she didn't agree I'd then ask her whether starvation was a recommended dietary option.

Sorry, I'm feeling a bit pedantic at the moment, yesterday I had to deal with a couple of medics to whom the word logic had no meaning.

User
Posted 15 May 2017 at 07:51

Hi Beebee

I've just checked on our current GP prescribed supplements (Ensure shake) and there is sucrose in the ingredients, plus sweetener E950, both in small quantities. More to the point there are proteins, minerals, vitamins and essential carbohydrates. Tony has his with semi-skimmed milk rather than whole milk, and has bananas or other fruit blended in to increase the nutritional value and the taste.

Can't believe that response from the doctor. As if your dad (and you) don't have enough to deal with without her going all Slimmers World on you. One of the additional benefits for us is that we don't have to spend so much time worrying about what food to buy and what to cook and then being anxious when he doesn't feel like eating whatever it was. Some days he eats ok and then has fewer supplements. Other days they are a lifeline. Either way do ask again.

Hugs

Eleanor (Ruth)

x

User
Posted 15 May 2017 at 15:41
Another update. Called docs to get my dad re-referred back to Macmillan and advised that the 30mg of slow release morphine has had zero effect on the pain so told to increase it to 40mg. I spoke to doc after I saw your post about the supplements so will ask again tomorrow.

Thanks everyone

Bee

 
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