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Original poster

Terminally ill cancer patient and only painkiller prescribed so far is Co-Codamol - is this right?

26 replies

PussinJimmyChoos · 05/07/2009 12:29

My Grandad is terminally ill with cancer. Lung cancer that has spread to the bone. He is becoming weaker by the day and at present, only weighs 5st 5lb.

We haven't found that the Drs or the Mac nurses have been much help. He was prescribed 40mg of Propanol (sp!) but this was decreased to 10mg as it caused his pulse rate to drop to 50

The only pain killer he's been given so far is Co-Codamol...not sure what strength, but I do know its in the higher ranges.

Gdad HATES the co-codamol with a passion as he says its doping him up too much and instead of taking two every four hours, he's only taking one. He's now complaning of aching in the arm and sore coxcyxx (sp!). He has a pressure cushion but we are now ordering him a special coxcyxx cushion

Is there any other pain killer available that could help without knocking him out too much and why is he only being prescribed co-codamol??

Any help would be appreciated.

TIA

Puss

OP posts:
Katymac · 05/07/2009 12:40

I can't advise on much of your post

I didn't want it to go unanswered - so hopefully this will bump it for you

But When I take co-codamol I take 1 every 2 hrs which keeps my pain at bay & me not too doped up to cope

HTH

Original poster
PussinJimmyChoos · 05/07/2009 12:47

Thanks Katy for replying. We are pretty stressed with it all.

Should also add he has a specialist oncology appoinment tomorrow and he doesn't want to go. I'm a bit shocked that they are expecting a 5st 5lb patient to trek to the hospital for a consult, especially when they have already agreed the way forward is palliative treatment only...its causing huge friction as he's adamant he doesn't want to go, Gran wants him to go to get more answers, treatment plan etc

FWIW, I don't think he should go. Hospital not the place for someone so weak right now!

OP posts:
TheProfiteroleThief · 05/07/2009 12:49

This reply has been deleted

Message withdrawn at poster's request.

onlyjoking9329 · 05/07/2009 12:55

sorry to hear about your Grandad.
The Mac nurses are expert in pain control and management so try and speak to them.
if he is too weak/ill to go to hospital get someone to come out and see him.Mac nurse can arrange this for him.
there really is no need for him to be in pain thou hard to get painfree without the drowsyness.

Original poster
PussinJimmyChoos · 05/07/2009 13:00

OJ - thanks for posting. Hope you and the children are doing ok

The problem we are having is that the Mac nurse doesn't seem to be getting involved in the pain management side of things. She's not getting involved much at all quite frankly and has only visited once.

I've said to my Gran she needs to phone and push things and maybe even ask for a different nurse but she's very stressed and to be honest, not thinking that clearly. She's worried about offending people and keeps saying we'll wait and see the specialist etc.

I don't think he should be going to the hospital. Think it should be a home visit or similar but we are really struggling as although the Mac nurse is very kind, she seems a bit...well, crap tbh which is totally at odds with what I've heard about Mac nurses in general, but I guess you get good and bad in every profession

Not sure what to do tbh

OP posts:
Thevelveteenrabbit · 05/07/2009 13:05

Mac nurses should be the way to go.
co-codamol contains paracetamol and codeine - it will be the codeine that is making him "dopey". However all "step-up" pain killers are also opiates and may also make him dopey - oramorph/fentanyl/oxycodone but may not - also the sleepiness is usually a side effect that you get used to - in that it is a problem to start with but wears off.

There should also be other pain medications that he could have in additon to the co-codamol depending on any other problems and the type of pain it is.

The hospital appt may be useful if he can get there as they may be able to suggest alternative analgesia and should have a good idea as to what will work.

Original poster
PussinJimmyChoos · 05/07/2009 13:11

I agree Mac nurses are the way to go, but ours doesn't seem to be doing much

OP posts:
TheProfiteroleThief · 05/07/2009 13:35

This reply has been deleted

Message withdrawn at poster's request.

madamy · 05/07/2009 13:36

I agree with velvettenrabbit - if he can get to the hospital then at least the Oncologist can assess him properly and prescribe some correct analgesia. They will also be able to chaseup and advise the GP, whereas if you just stick to the GP, not much will change. Unfortunately, you're not going to get a home visit from a hospital doctor.

If the Mac nurse has only visited once, she probably doesn't know how much the pain is a problem for him, so she needs to be kept in the picture by the GP, your Gran or the hospital doc.

brimfull · 05/07/2009 13:40

I think you need to get on the phone to the Mac nurse.

Your Gran is maybe trying not to be any trouble.Take the liason role and talk with the nurse yourself.

FluffyBunnyGoneBad · 05/07/2009 13:42

I'm so sorry to hear about your grandad. It sounds like they are trying it ease the pain by using milder pain killers, morphine based analgesia (diamorphine etc) can cause breathing problems which is probably why they are prescribing codeine based ones. The GP can help with this aswell though.

bogwobbit · 05/07/2009 13:47

Puss, what's happening with your grandad sounds pretty crap! My brother is an oncologist and he frequently says that pain can and should be managed and that no-one should suffer the way it sounds like your grandad is. Also, from a personal pov as my dad had terminal lung cancer, he was given morphine and the dose managed so that he was kept as 'non-dozy' as possible for as long as possible.
I agree that it is probably a good idea for him to attend the hospital appointment so that he can be properly assessed and hopefully get the pain relief he needs. The other thing that would concern me, and it's difficult to say without seeing your grandad and knowing his exact circumstances, is the ammount of support he (and your gran) are getting to look after him at home. One visit, from a not particularly good nurse, doesn't sound an awful lot.

Sidge · 05/07/2009 13:54

Puss I'm sorry your grandad is worse

Bone pain can be hard to manage but he can have more than co-codamol. However if he isn't letting on to people how bad his pain is then they won't step up from co-codamol. My dad was like that - when I arrived he was on Panadol and wasn't telling the staff how much pain he was in; every time they said how are you he would smile and say 'fine'! I spoke to the staff and they then started working their way up the analgesic ladder.

If you can get him to the oncology appointment it would be a real bonus as the specialist can advise more appropriate pain relief. The downside is many of the effective analgesics are opiate based and can make him drowsy. Might be worth trying a Fentanyl patch, or maybe some Oramorph given regularly which can then be titrated to calculate a suitable dose of MST.

I hope things improve.

themildmanneredjanitor · 05/07/2009 13:56

This reply has been deleted

Message withdrawn at poster's request.

cass66 · 05/07/2009 19:56

Can he take ibuprofen/neurofen etc?? if so this can be taken as well as cocodamol and is often better than it for bone pain.

Also, radiotherapy can be good for bone pain, is painless and effective. the oncology Dr can arange that, so it might be worth going if you can make it.

Good luck and best wishes. Cass.

Original poster
PussinJimmyChoos · 05/07/2009 20:54

MMJ -not sure why they prescribed the beta blocker actually...will pass that on for them to ask tomorrow.

I think the oncologist will see how weak he is and perhaps that will kick start the process a bit more. I know they are feeling that he's been left to get on with it somewhat. Mum is feeling awful that he's going to the hospital as a) he doesn't want to go and b) she's thinking its going to be awful for the other patients to see the state he's in

I'm profoundly deaf so tend to use e-mail rather than phone, but if could hear on the phone, I think I'd be kicking up. Have asked if mum could do it, but Gran lives next door to her and she gets so so agitated when mum or I suggest pushing for things. Mum actually cried with frustration yesterday. I think its the sheer stress getting to my Gran so she's not thinking clearly and snapping when we are trying to help. Gdad not taking the full quota of pain meds is taking its toll also.

The plan tomorrow is to take my Grandad back to the car with my mum and his brother, leaving my Gran with the oncologist to ask all the questions she doesn't feel she can ask in front of my Grandad...that may sort somethings out

The lack of support from the GP etc is starting to really wind me up

OP posts:
brimfull · 05/07/2009 21:01

well good luck tomorrow

I hope you get the help you all need and should be getting already-makes me

wrinklytum · 05/07/2009 21:07

It depends upon how well his pain is managed atm.Some people may be OK on this but if it is metatesising and in bones would say unusual.is he the "put a brave face " on it type?

I would try to see if the onc.appt could be kept(if transport difficult gp can often arrange transport given notice) and push for MacMillan support,or a referral to pain team.

Ususally analgesia is titrated using the analgesic ladder,starting with the simplest such as paracetomol and stepping up.The next step from co-codamol high strength (kapake) would be oramorph or a low dose fentanyl patch (which is a bit like a nicotine patch and changed every 72 hrs.Some pain is not always responsive to opiates (Nerve pain FI).Dependent on condition some anti inflammatories could also be added if not contraindicated such as diclofenac/brufen,or gabbapentin.Hopefully if your in law sees the onc they can assess pain and ensure he is getting the requisite amount,without over sdeating himxxx

idranktheteaatwork · 05/07/2009 21:19

Just axquick thought, my grandad wouldnt take his full dose of cocodamol because it constipated him and he was too embarassed to admit it for a while.
Could that be a part of it?

wrinklytum · 05/07/2009 21:24

He is nursed at home then puss?Does he have a district nurse?

Re I drank...good point.Co-codamol and indeed anything stronger can be very constipating,so hopefully he is px some kind of bowel meds too.

Original poster
PussinJimmyChoos · 05/07/2009 22:34

He's very constipated but bless him, vocal about it! He has movicol so that's helping him.

He's quite up front about his pain, he's not the type to grin and bear it. He just hates the knocked out feeling from the co-codamol. I've text my mum re the oramorph and she's going to ask about that tomorrow.

Hopefully, when the consultant sees the state he's in, it will start things rolling.

We asked about hospital transport but because there are so many of us willing to pitch in and help out i.e lifts to hospital etc, the Mac nurse was all oh, couldn't you take him yourself etc. That in itself is not a problem, but its the getting a wheelchair for him when he gets there - sometimes the wait is about 15mins and he gets really sore as he has no fat on his bum. He's got a pressure cushion so will be taking that and we have a coxcyxx cushion on order.

We were going to hire a wheelchair just for this hospital trip, but Gran just got so stressed out with it all that we didn't...she's 79 this year and its getting too much for her, even with all of us helping out

I could scream tbh!

OP posts:
Original poster
PussinJimmyChoos · 05/07/2009 22:35

Wrinkly - he has a district nurse but we were at her...she put down the wrong dose of propanol that he was on in her notes and also put that he has 'suspected' lung cancer...I mean ffs!!!

OP posts:
ThingOne · 08/07/2009 00:26

How did it go?

Original poster
PussinJimmyChoos · 08/07/2009 22:28

Thing - thanks for asking.

The oncologist has given him steriods to help with his appetite (why the district nurse saw him at 5st 5lb and didn't even suggest this I do not know ), he's got Oramorph instead of the Co-codamol and paracetamol which he can take with the Oramorph.

They are also going to give him some more palliative radiotherapy.

However, he's had to go back into hospital because his calcium levels are up again and so they have had to bring it down. He's been there since yesterday afternoon and Gran says he looks brighter since having that treatment

Not too impressed with things so far though - I mean if we hadn't have seen the oncologist on Monday, doubt the nurses (mac and district) would have suggested steriods etc. We are all really angry about that and I'm going to see if Gran will let me write to the appropriate people and flag all of this up

Overall prognosis is that its spread out to other parts of the body and its just a case of months, which we kind of knew already as he's just so thin and weak

OP posts:
ThingOne · 09/07/2009 17:49

Seems so unfair that he's not getting the help he needs. Everyone's always banging on about how much better palliative care is these days. I hate to think what it was like in the past if this is true.

I was given morphine patches which were great for controlling on top of the pain. I didn't take as strong as I should have done as I was worried about being able to function with two small children but I discovered later on that it would have been fine, and I'd have adjusted just as well to stronger dose after a few weeks. I wouldn't drive on them, but he may well find them better as they give a constant low level feed of morphine, rather than having to wait for the oramorph to act. The GP can prescribe these patches.

The other place I got help was from my local hospice (even though I wasn't terminal). They are experts in palliative care. Do you think there's one the GP/mac nurse could put you in touch with?