Reality check 3

Hi Tinalay, sorry to hear things aren’t going too good. When I had unbearable pain in my leg and shouder (product of cancer spread to bones) my doctor, oncologist, and palliative care team had a zoom meeting to decide what to do and came up with oramorph, zoromorph , paracetamol and gaberpentin all together and this has helped my pain immensely. Hopefully your team will be able to do the same for your back. When I first got diagnosed, I was told , nobody should be in pain with cancer, there is always something out there, you just have to find it. 
hoping you have better dsys

love Rose xx

Oh Tinalay...what a horror. But you are like a cat...9 lifes..i'm glad you're back and i really hope you never will get such bad pain again...

Oh Wow, You certainly have dodged a bullet, I'm so pleased your saturation's came up when they did! I know exactly what you mean about the acute admissions, I signed myself out the last time after several hours in that ward, realising no one had a clue what to do with me! Maz is right, it doesn't really matter what the maximum dose on the leaflets of medications say. The doctors have the authority to go over that. I already take more than the recommended doses of a couple of drugs but I only use the extra when the pain gets unbearable! Ruth was told the same as myself and probably lots of others here that they have drugs to manage pain. What they don't tell you is how long it takes to come up with the right combination to suit the individual!

I wonder have they found out what caused the flare up in your back pain? I hope they managed to sort you out with some relief, even if means you will sleep for a bit! We are all with you in spirit! I wish I could do more than just think about you and pray!

Thank you all for these lovely messages full of understanding and support. They really do help.

I’m taking 80mg of zomorph a day and 25mg of oramorph every 3-4 hours for breakthrough pain. The Amitriptyline is the missing link, currently 40mg at night with 6.0mg of dexamethaxone during the day. My Consultant thinks once we can get that right we’ll be able to cope with incident pain so fingers crossed. I know there are many people who really struggle tvman & anndanv for a start, thinking of me and sending prayers very welcome!  Does the temperature help anyone? Forecast is for 25* here tomorrow… xx

I am getting into the prayer situation, best to hedge your bets I think. I will send you all the latest batch I have prepared, I have included quite a lot of begging, leave those bits out if they are too obsequious. 

Hopefully that mixture from the docs has got to start having an effect. 

You are entitled to be fed up each time you go backwards instead of forwards, you will get on the winning streak eventually.

Sending you loads of good thoughts. Xxxxxxx

That sounds a good amount of morphine.

I take zomorph and oramorph for breakthrough pain and it s ms to work well for me . I am on a smaller dose than you I hope the amount you take help your pain 

I found the amilodipine took a few weeks to take effect when I took it for nerve pain 

love Ruth xxx

I really, really don’t want to complain & appreciate that long term survival of cancer patients means more complex issues to deal with. 
The doctor that rang to check up on me today asked if I was in…And told me I’d been cleared for pregabalin on 4th June. She didn’t know if a script had been issued or where to look for it but said that every time they had a plan I upset it by having some sort of ‘funny turn’

Don’t know if we can do a fair assessment of it if it hasn’t been used. 
Otherwise a good day, my sister did lots of clearing out so we really do look like a therapy room &

it’s raining earrings and pamper stuff

The pain has been manageable, I’ve had  a couple of brief & welcome visitors and the sun & warmth lovely. Looks like there’s a change coming so better make the most of it. Hope everyone had a peaceful evening xx

How lucky you were in and what a nuisance you have become to them.

Hopefully they will recall having agreed to the hippocratic oath otherwise they are likely to issue you a DNR.

So pleased the pain is occasionally manageable,  let the medical buggers work to improve that.

No more funny turns, the NHS isn't there for your benefit you know! Xxxxx

It sounds like you are getting on top of the pain issues which must make things a lot more pleasant hope that continues for you

Hi Tinalay, are you in a more comfortable place now? The lovely weather has been a welcome boost. I always imagine you surrounded by your family, keeping you safe. 

X