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Original poster

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

41 replies

LordTrash · 21/07/2017 18:59

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?

OP posts:
DoItTooJulia · 21/07/2017 19:00

Do you have a local hospice?

DoItTooJulia · 21/07/2017 19:04

Sorry, pressed way too soon.

I'm so sorry your mum has been left like this.

Technically your hospice will want a referral but ignore you ring and explain they may be able to help. They've been brilliant for us. Fantastic at managing symptoms.

OOH may be able to help-a dr can do a home visit, and may even refer you to the hospice.

Alternatively it's A&E, who may be able to refer you to an acute cancer triage ward in your local hospital.

The strongest OTC Painkiller is probably cocodamol. Could be worth a try until you get help?

spankhurst · 21/07/2017 19:04

How stressful for you all, I'm so sorry. My mum has severe pain and is given morphine which is the only thing that really works.
Could you take her to another GP? It sounds like hers doesn't get the situation. Worse case scenario, take her to A and E?

DoItTooJulia · 21/07/2017 19:05

Typos, sorry, I'm typing too fast because I posted too soon.

Ignore is supposed to say if you

user1471453601 · 21/07/2017 19:05

I'm so sorry your mum is going through this. I think you have to persevere with GP until you get consultant appointments.

If it's any help, when I had part of my lung removed, along with part of three ribs, the only thing that touched the pain was dihydrocodeine and paracetamol. There were side affects (there always are) but with the right help I was able to manage them.

Good luck

HeyRoly · 21/07/2017 19:06

Honestly, since she's in such terrible pain, I would take her to A&E. It's totally appropriate. She shouldn't have to suffer like that.

Original poster
LordTrash · 21/07/2017 19:07

Thank you, DoItTooJulia - local hospice is an excellent suggestion. Will give them a ring tomorrow for advice. Have also thought about OOH but wondered if they could help with a referral already being 'in the system' as it were.

OP posts:
Original poster
LordTrash · 21/07/2017 19:08

Will keep the option of A&E open too. There is no way she can carry on like this for 3 more weeks.

OP posts:
zzzzz · 21/07/2017 19:08

This reply has been deleted

Message withdrawn at poster's request.

Original poster
LordTrash · 21/07/2017 19:10

Thank you - for various reasons I have very little faith in her GP (used to be mine...) so I might try other avenues before going back to him.

OP posts:
Veterinari · 21/07/2017 19:11

Pain is an dnergency - it's debilitating and shit and she doesn't need that on top of the cancer-related anxiety.

A and E or hospice
Your GP can give you dihydrocodeine, tramadol and gabapentin and should be better than they are. I'd be putting in a formal complaint.

DoItTooJulia · 21/07/2017 19:11

Honey, don't worry about making a fuss. Just get your mum seen-tonight.

I would definitely call OOH now-they won't be able to do anything about the actual diagnosis but they will be able to help with pain relief. Flowers

BiggerBoatNeeded · 21/07/2017 19:12

This reply has been deleted

Message withdrawn at poster's request.

Gatekeeper · 21/07/2017 19:16

Your poor, poor mum. I know someone who was recently diagnosed with myeloma and I've watched him in agony Sad. He was prescribed a morphine pain patch five days ago and the relief he now has from pain is incredible. He can sleep at night and has started going out again

Original poster
LordTrash · 21/07/2017 19:19

Great to hear your experiences of people with myeloma - dh's grandfather had it, and lived till he was 94 (20 years after diagnosis) independently, out gardening right until the end, so we're trying to stay hopeful on that score.

But something MUST be done about the pain - I've just called her and said we're going to A&E. She said 'Not on a Friday night' (fair enough) but we're heading there first thing tomorrow morning.

Thanks, all Flowers.

OP posts:
ginnystonic · 21/07/2017 19:22

I'm so sorry your mum (and you) are going through this Flowers

My DF had horrendous pain (bone cancer) where he was weeping in pain (this is a man that never even took paracetamol for a headache)

We were not living in uk at the time, so I'm not sure if the exact route to follow here. But, we contacted hospice (they had an emergency number and we phoned one night that was particularly bad) a hospice nurse was sent out to us the next day and morphine was given.

In my DF case it was the only painkiller that gave relief (and it did give complete relief from the pain)

I don't feel a GP is the right person to manage cancer and cancer pain (I would suggest an oncologist/ hospice nurse etc. who specialise in that area)

I wouldn't hesitate to visit A & E either, keep 'kicking up a fuss' you know your DM best and when she needs decent help.

There is so little we, as family members, can do but being instrumental in helping get her pain relief will be one of the best gifts you will ever give her.

Wishing you much strength.

HeyRoly · 21/07/2017 19:25

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 Wink
GoodBadOrIndifferent · 21/07/2017 19:25

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

cloudofpink · 21/07/2017 19:26

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.

BiggerBoatNeeded · 21/07/2017 19:27

This reply has been deleted

Message withdrawn at poster's request.

lougle · 21/07/2017 19:34

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.

Original poster
LordTrash · 21/07/2017 19:46

lougle, thank you, have just done that.

Fingers crossed she can finally sleep tonight.

OP posts:
crazykitten20 · 21/07/2017 19:47

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

BiggerBoatNeeded · 21/07/2017 20:02

This reply has been deleted

Message withdrawn at poster's request.

lougle · 21/07/2017 21:33

I hope they get to her fast Flowers

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