Mum in pain - please help

[Charlotte]

Hello everyone,

I haven't posted on here for quite a long time... My mum was diagnosed in March last year and finished chemo at the beginning of December. She had responded quite well to the treatment at first and thankfully has been able to spend some precious time with her two grandchildren, my son Isaac who was born last August, and his cousin Alma, who was born on Boxing Day. She also managed to come to my wedding in January, stayed right to the end and danced and everything.

Since then she's been deteriorating quite rapidly - you will all know how painful that is to watch. Over the past week or two she's been suffering with more and more pain, to the point where today she seems to have been in pain for most of the day. Surely it must be possible to control her pain better than this... I'm going to call her nurse at the Hospice tomorrow but wondered if any of you had any advice. Mum has a Fentanyl patch (I'm wondering whether she needs to get the dose changed again) and paracetamol, and takes Effentora for breakthrough pain, as well as something else (Amytryptiline?) for neuralgic pain. She also has Oromorph but doesn't want to take it as it makes her constipated and then she needs laxatives which give her stomach cramps. She's scared in general about taking too many drugs I think - she often tries to 'hold off' before her next dose of Effentora. Having said that, this evening the pain was bad again over an hour before she could have the next dose.

I just feel so helpless, it's awful to see her suffering like this. My aunt is staying with us at the moment and has suggested trying to get some medicinal cannabis for her but Mum doesn't seem keen. Any suggestions gratefully received.

Charlotte x

[louiepc]

Hello Charlotte

I'm sorry to hear that your mum is in so much pain. I would definately get her fentenyl patch checked, and maybe the dosage could be changed. My mum had a lot of pain in her back, which apparently is quite common. There is a big bundle of nerves at the point in the back, and with the tumour pressing on it, the pain gets really awful. Mum was put on Gaberpentin, it did completely knock mum out, but it stopped her pain. They then changed it to oxynorm. I can't quite remember whether the oxynorm worked that well, but I know mum didn't like oramorph.

She also used to take codeine, but this will also cause constipation.

I hope that you get the pain relief that your mum needs.

I am glad that you have some wonderful memories with your mum, you will think back on those lovely times and smile. xxxx

[PCUK Nurse Jeni]

Hi Charlotte,

Sorry to hear that your mum is in pain.

The main thing about pain is to keep on top of it and not let it get to a stage where it is really bad. This will take careful management by a Macmillan or similar nurse, or the Gp, who needs to be in regular contact with your mum in order to assess and titrate any further pain relief. It should be entirely possible for her to have much better pain control than this, and she should not be in pain for most of the day. There are numerous types of pain relief out there, so there has to be one which will make her quality of life better.

In terms of the patch, is it secure and in the right place? Sometimes, patches can come loose and it renders it ineffective. Also, she may need a higher dose. When you speak to the hospice nurse, see if she suggests admitting your mum for a short time in order to get the pain relief sorted. This is a common occurrence, and is often the most effective and quickest way to get the pain under control.

If she can't take oramorph due to constipation, as the laxatives give her cramp, then she could have a different laxative? There are a few which cause wind and crampy pains, so maybe a different one? It would be better to have this so she can take her meds, rather than being in pain. She certainly should not be holding off on pin relief - the key is not to let it build up in the first place if at all possible.

I think there are other things which can be tried before the cannabis? Especially if your mum is not keen. As I said, there are several drug treatments which can be taken to see if they will be effective or not.

Hope you get on ok with the call tomorrow.

Kind regards,

Jeni.

[Charlotte]

Thanks Louie and Jeni for your replies. The hospice nurse came today and decided to increase the dose of mum's patch - she said it could take a couple of days for the higher dose to kick in but this evening she's already feeling a lot better, and was well enough to help me give Isaac his bath (with his new rubber ducks - one of those precious memories Louie). She also suggested a different laxative for her to try. Mum has pain around her back too, Louie, but lower down, so the nurse wasn't sure whether or not it's due to pressure on that bundle of nerves (if we're talking about the same bundle). Anyway, I'm crossing my fingers that for now the stronger patch will keep the pain in check, and Jeni I'll try to gently tell Mum what you said about ideally not letting the pain build up too much (which is what I've been trying to tell her - but good to get validation from an expert!).

Thanks again,

Cx