Follow up call

One step forwards, 1 and a half steps back it seems. That pain does sound awful, do you get any large periods of pain free sleep?

It is really upsetting when promised phone calls fail to materialise, glad the community nurse is proving useful. If you have been used to efficiency and professionalism in your previous daily work it is hard to lower your expectations. 

Heres hoping for you Tinalay to get back where you were a little while ago. Xxxxx

It certainly doesn't do anything for my confidence when something the nurse identified as urgent hasn't happened 5 days later, the pain is so draining and I was really enjoying being painnfree on the high dose steroids.

The  TENS machine really helps, as does a soak in he bath, but it's the night time pain, once it wakes me up I just can't get comfortable again and end up tired and tearful. I've been very lucky so far though, so shouldn't complain. We'll see what Monday brings. xx

We will get you back where you were. I remember having pneumonia and crying because I was not able to sleep for a week. One injection, sent to hospital and the world changed! They need to get an answer to that pain. Plenty of drugs out there, they will get you on the right one. Horrible at weekends when you know everyone is missing.

I am sitting here watching a recorded masterchef, easy for me to talk nonsense but you will get sorted.

As soon as you are back falling out of your chair the happier I will be. Xxxx

Hi Tinalay, I'm so sorry you have been let down. It is terrible waiting for the call that doesn't come, especially when you think it will solve your problems and that they will find something to help with the pain. Please ring your GP 1st thing on Monday morning and don't ask for something for the pain, demand it! Or you should have Emergency phone numbers your nurse or oncologist gave you, possibly a while ago. Phone that! That's what I ended up doing after being past from pillar to post for weeks. Please don't wait, pain especially at night always seems worse.

I wonder have you tried the normal nerve pain meds like Pregabalin or Gabapentin? Morphine got to the stage with me, it was like eating smarties as they did nothing. They also have patches for pain which are quite good, ask about them!

I'm so sorry your nurse didn't phone someone on your behalf either! She should have done! I know how difficult it is and how your husband must feel! Some nights my husband just held me and we both cried. I was crying because of the pain, my husband was crying because he could do nothing to help. That was the night I decided someone had to do something! I phoned my GP on the Monday (yes that was at the weekend too!) & told him if he was the one in charge of my health, I needed him to fight for me. He did! Good luck my friend, things will get better, you won't believe it now but I hope it happens soon!

Hi Tinalay

I don't have confidence in any doctor's estimate of surgery or pain etc since I had a heart attack in 2012 and I was told I urgently needed surgery. I waited 5 months for a stent to be put into the main artery in the left side of my heart, commonly known as the widow maker!.

I feel for you having pain through the night, I know exactly how it feels. I can only hope someone finds relief for you.

Tvman xx

Oh no that sounds bad...isn't it a shit feeling to wait for...nothing!! Pls listen to anndanv and call your gp first thing Monday...hugs Pet

Morning anndanv The only pain medication I’m on is morphine sulphate twice a day, paracetamol & oramorph for break through pain. The Macmillan nurse was horrified that someone with cord compression & nerve compression in the lower spine wasn’t prescribed a nerve agent like Gabapentin, and her main role at the moment is pain relief. I’ve sent a request to my GP via their online service which works better than a phone call, but will call the nurse first thing in the morning too.

I haven’t fallen out of the chair again but we did knock an Easter display over in Smiths so it rained fluffy bunnies and chocolate eggs on me for a while. A very po faced assistant marched over rolling her eyes...we felt suitably chastised.

I’ve also discovered that being able to put shopping on my lap is useful but when I get back to the car I occasionally find something that was missed at the checkout and my sister has to go back and pay for it, so always use a basket.

Thanks for the moral support everyone, it does help xx

You must ask . I went to A @E  when I was in so much pain I couldn’t stop crying. They 

kept me in for 2 days and gave me an injection of anaesthetic into my back  eventually I had surgery on my back. 

there are things that can be done . You may need help from an anaesthetist as well as palliative care.

I think we know how much we can take. Xxx

Hi Tinalay. My wife has MS and as part of that she also suffers from trigeminal neuralgia.  I've think you probably have heard of that, it is known as the worst pain known to medical science.

Before she was diagnosed we had all night screaming, trips to A&E where morphine didn't touch it.

Eventually after having unnecessary teeth surgery she was diagnosed.

I do not know how these drugs will affect you. The intention is to deaden down the nerve activity in the brain.

She started with the tried and tested Tegretol, increasing the dosage until she didn't know what day it was. She has eased off that now.

As breakthrough pain started causing problems her neurologist threw everything into the mix.

Some or all of these drugs helped.

Duloxatine,  topiramate, amytriptoline, lacosamide.  Some of these were not licensed for TN but the consultant had a fair amount of clout and her GP was happy to join in the fun.

We still see him privately just for a catch up, best few quid we ever spend. If you need his name, PM me. Here's hoping Monday brings some relief. Xx

She tried gabapentin but the side effects were too much. She is still on all of these drugs as she dosnt know what ones are doing the good work and is too frightened to come off any. Been like that for 25 years at least!