Mum probably has cancer - in chronic pain but no painkillers. What can we do?

[LordTrash]

My mum has been in horrendous pain since mid-April, and it has now become clear - after months of false dawns and differing experiments - that she probably has myeloma (a form of leukaemia).

Her GP referred her to a haemotologist on Tuesday (18th). She chased the referral today and was told the 2-week wait for an appointment wouldn't even START until next Wednesday (26th) - eight days after the initial referral. She was advised that she would definitely have to wait 2 weeks from then and possibly longer.

In the meantime, she is in shocking pain and isn't getting more than 1-2 hours sleep a night because it keeps her awake at night. GP tried amitriptyline, which did nothing, and co-codamol - again, doesn't even touch the sides.

She is in absolute agony and I really doubt she can take another 3 weeks of it. When she pleaded, with tears (and this is a very stoic woman, believe me) to the GP, he said, 'Fine, fine, don't worry' and dismissed the subject.

What on earth can we do?

[stopfuckingshoutingatme]

Oh
I am
Pleased to hear OP

When you are less traumatised You could write a very firm letter to the GP practice

My advice is to word it as feedback and 'for her medical notes ' and end with a request for information as to how they can support her in this initiative and be active should this happen again .

I find that approaching it more subtly will
Mean that they nicer people there will be helpful and the feedback will get back to him anyway

[lougle]

That is such good news Tell her not to be afraid to call back if she finds that she gets used to the painkillers and the pain breaks through - they won't mind looking at things. Similarly, if she starts to feel sick (that might have been what the 'indigestion' drug was for). Either way, if she needs to make a fuss, make sure she does

[TheFaerieQueene]

I'm so happy your DM is pain free. Your GP sounds like a nightmare. Would they let their mother suffer like that? I think not.

[LordTrash]

Thanks for asking - doctor turned up just before midnight, gave mum enough oromorph to last at least a week, another drug for specific bone-type pain (can't remember the name) and something for 'indigestion' (guess that's the Movicol but mum didn't want to go into detail on that one...)

Result was she had her first good night's sleep in nearly 3 months and blissful release from pain. Went round to see her earlier and she was in tears of relief, and looking so much brighter.

Great to see, but I'm still mad as hell at the GP. If she hadn't had anyone to fight for her, she could have been left to suffer for another 3 weeks .

[hairymuffet]

Hope your mum is a wee bit more comfy

[lougle]

I've just seen this. Oramorph is a great first step - easy to take, you can increase the dose in very simple steps and you can normally take it up to every two hours. The thing to make sure of is that you have adequate laxatives prescribed alongside, though, because the main side effect is constipation and you don't want to wait until it's a problem to find out about it. Movicol is a good one.

[Veterinari]

Brilliant - oromorph will definitely help. OP PLEASE teport the GP. Denying pain relief is about as shitty as it gets

[LordTrash]

She said they were bringing oromorph and would sort out a plan for the weekend.

Well done, mumsnetters - you're the literal best (as dd1 would say) .

[lougle]

Fantastic news, well done for making that call. I hope they give her some strong pain relief and get a plan together for the weekend.

[LordTrash]

Thank you, everyone, they are sending somebody over right now - advised against A&E because from what she told them about her pain, it would be really difficult for her.

So the 111 guys are telling her she's too ill to even go to A&E, but the GP reckons she's fine to carry on without pain relief . I'm going to have a word with her about changing GPs (my surgery is fab) once she's feeling more human.

Thank you so much, all .

[Slimthistime]

I hope your mum gets something
I am raging at the GP. Could you cope with filing a complaint? Is there someone else at the same place you can see? Outrageous. There's one of five at my surgery who seems to delight in never prescribing. I hear patients say they want an appointment with anyone who isn't him.

[stopfuckingshoutingatme]

Just RTWT

Fuck that GP am so angry with them

I said that about my dad not to make it sound like she is Dying but to assure you they will take this seriously

[stopfuckingshoutingatme]

Honey I also say a and e

From my dads cancer reoccurring to it getting he progressed and ended up in a and e , then ICI then he passed

I say that as when the pain is this bad it's very serious and she needs proper palliative pain killers

They will look after her and this is an emergency

I am so so sorry for you and her

Sending strength

[lougle]

I hope they get to her fast

[crazykitten20]

Is it silly to suggest changing GP surgeries? For your mum?

[LordTrash]

lougle, thank you, have just done that.

Fingers crossed she can finally sleep tonight.

[lougle]

You can call 111 now, they will send a GP out who can give an injection to give pain relief, and may well be able to arrange admission for pain management, via a medical assessment unit rather than A&E.

[cloudofpink]

My aunt has myeloma, and had compressed vertebrae as a result when she was first diagnosed almost 2 years ago. The haematologist immediately prescribed slow release morphine (mst) and lidocaine patches as well as cocodamol. They helped significantly to get the pain under control and she has pretty much been able to get on with life. I got lots of information from Myeloma uk and we also had a specialist Macmillan nurse who helped with pain control. Not sure how you can get help until you see the haematologist, but persisting with the GP can't do any harm - she shouldn't be left in pain.

[GoodBadOrIndifferent]

A+E. Appropriate and may speed investigations up. Saturday morning tends to be quiet

[HeyRoly]

I really think you should go to A&E now. Two reasons:

1. It's too early for the drunks to start arriving
   
2. She should be triaged and seen before people who are there with splinters and silly stuff