Pain 'attacks'

Hi Jen,

Everything crossed for you getting some help at your appointment. Although of course it shouldn’t be down to luck- just proper understanding of this cancer, empathy and responsiveness. 

Hope you get the help you need.

xx

Utterly pointless. Didn't get the call from GP until almost 6pm and despite me trying to explain and plead for something that might actually work, all I've been told to do is increase amitriptyline from 20mg to 30mg at night.  I already know this isn't going to help. Doctor said that was the next step and that I couldn't increase anything else and offered no alternatives. I'm going to try attach the note I've been keeping of what I've been taking. It's a lot and still doesn't fully alleviate the pain. When it gets really bad, it feels like nothing works at all and I just have to ride it out.

Will leave a message with the colorectal nursing team tomorrow and wait for a call back :(

Hi Jen,

I am truly sorry to hear that your GP wasn’t willing to prescribe you anything more. I can imagine your frustration. Just not on.

Definitely speak to the colorectal team tomorrow. I’m sure that they will be more helpful as your GP clearly doesn’t get it at all.  I really feel for you having to battle for help again after all the difficulties of getting your diagnosis.

Xx

Honestly, I feel like I'm being treated like a junkie, begging for a fix... there must be something other than dihydracodiene that might help, because it really isn't :( currently got hot water bottle stuffed down the back of my pyjamas. Have ordered a sitz bath, as seen it recommended by quite a few people on here. Xx

Hi Jen, 

This sounds awful. Have you asked about oral morphine or oxycodone? This is what I was on, alongside paracetamol every four hours and it really helped keep on top of the pain. My oncology team prescribed it though as I have never received much support from my GP practice. I don’t know if this is something you could ask about if you give them a call rather than your GP. They shouldn’t be leaving you to suffer like this. 
Good luck, 

xxx

I think I've about given up with the GP at this point... even tho I was redirected back to them by the original surgeon for pain relief in the interim period whilst waiting for oncology. In my experience, asking for anything specific from the GP gets you nowhere. Just have to hope I will get my next hospital appointment ASAP and try seek help from the nursing team until then. Just keep going between anger and despair xx

Hoping they sort you out with an appointment really quickly so you can get on top of this pain relief. Once you have your oncology appointment, you’ll be able to contact them and they’ll be really on it and supportive. That doesn’t help in the mean time though. 
Keeping everything crossed you get seen sooner rather than later and get all the help and support from your team. It might be worth calling the GP practise manager, that’s the only thing I can think of to get things moving a bit quicker. 
Best of luck, I really hope you manage to get a good nights sleep  xxx

Hi Jen,

To be honest it sounds exactly how you are being treated. Shame on them. 
You could have some oramorph or long acting morphine or oxycodone. 

You are doing all that you can with your current regime from your post. Amitryptiline  is for nerve pain and it sounds like your pain is more related directly to the tumour. 

I hope you get some help tomorrow xx

Hello JenW

I am so sorry to hear what has happened (and astonished).  And even more so when I had a quick Google of amitriptyline - you are on a low dose.  I would ring the colorectal team first thing tomorrow.  Hopefully they will look at your case and medication and try something different.

I am thinking of you, please let us know how you get on.

Irene xx

Hi JenW 

I had a different cancer but the same issues with no proper pain relief from a gp so I hope you don’t mind me replying. I got zero help from my gp-even when a doctor came to the house because I was unable to attend the surgery due to my pain levels.  I was told I’d be referred to the pain management team-that was in 2020 and I heard nothing, ever. He only wanted to know if I had thoughts of wanting to die-I said all I wanted was for the pain to be managed. It was hopeless and I was made to feel like I was nothing.

I contacted my oncologist who prescribed pain relief immediately and I was able to pick it up that day. I would always go direct to my cancer doctor and bypass the gp-I was under the care of my consultant and she understood, whereas the gp made me feel guilty for asking for what I  needed. 

I hope you get a reply from the colorectal team and please keep pushing. I’m not a doctor, but amitriptyline seems an odd choice in my experience. My gp prescribed ibuprofen, which I shouldn’t even have been taking since I was bleeding. My consultant put me on Tramadol, and that did help considerably. I just wanted to say how sorry I am that you are having to go through this as I understand how miserable it is even though my situation was different.

Sarah xx