Pain 'attacks'

Hi JenW ,

I’m really sorry that you’re going through this right now. I was lucky enough to have very little discomfort prior to my diagnosis but my tumour was removed via local resection prior to going through the chemo-radiotherapy & the pain I had following surgery was awful! I was given oramorph & was told to take it regularly to try & stay ahead of any pain, it did absolutely nothing for me except cause awful constipation which landed me in A&E 5 days post surgery with burst stitches & bleeding. I think it sometimes takes trying a couple of combinations of meds before you find one that you respond well to so I would give your Dr’s a call & tell them what you live been prescribed just isn’t working. I hope you find some relief soon. 

Nicola 

Hi Jen,

I’m so sorry that you’re experiencing such intense pain. It sounds absolutely awful and frightening. 
It most definitely sounds like you should be checked out and have a review of your pain medication. 
I can also understand your thoughts of going to A&E but would likely be a very long wait.  

Definitely tell your team what is going on and they should be able to review your pain medication, possibly adding something long acting to help you get through the night. Hopefully they could also have a look and see what’s going on right now. If you liaise with the MacMillan nurse they can discuss with the oncologist and if you do have to go to the hospital at least they’ll be expecting you.

 I really hope that you get some help with this very soon. Really feel for you.

Sending hugs xx

Hi, yes, mine was bad, could only get to sleep dosed up and then woke , usually 3 or 4 am in agony, but only 2 or 3 days in to treatment I got my first nights sleep! I’m now 2 weeks in, and I would call my pain uncomfortably, but it’s not keeping me awake and, as long as I don’t sit down for too long, I’m managing with no pain relief at the moment, so overall, feeling positive that it’s shrinking.

Hope you get your treatment started soon and some relief 

 x

That sounds a truly awful thing to go through, Nicola :( I hope you're past all that now and doing well x

Yes, I think I need to go back to docs, but they've been very reluctant to prescribe. It took paramedics coming out and then contacting my GP to get the help I already have this far...  x

Thank you Peb24. I will try get in touch with someone for help x

Ah, I really hope the treatment calms all this down quickly for me too. Sleep deprivation is awful and makes everything worse. Still waiting for positioning scans etc, so probably a few weeks away from treatment starting still x

Hi Jen,                                                        I really feel for you. It sounds like you are not yet properly linked in with a team. I can’t understand why they are reluctant to prescribe when you are clearly suffering so much. 

Sounds like your GP is in charge of managing it at the moment and doesn’t really get it. It’s awful not being able to sleep due to pain. I truly hope that you get some proper help even if you have to push for it. Do you have a MacMillan nurse yet? They are incredibly helpful and would be able to liaise with your GP.

Everything crossed that you can access some help quickly. Xx

Peb24, it's so frustrating. They have the hospital letters, they know I've had all the scans etc and my diagnosis. One GP wanted to examine me before prescribing! Which I outright refused as all it would achieve is causing more unnecessary pain... they were a little more sympathetic last time I spoke, but obviously can't contact them till tomorrow morning now. It's been such a battle to even get this far :( took around 14 months from referral before I was given this diagnosis, and several months of symptoms dismissed as hemorrhoids before that. It wouldn't have got this painful pre treatment if things had moved faster. 

Just waiting for this oncologist appointment and positioning scans before treatment can start. 

Thank you for all your replies and support btw... it's hard in the middle of the night, not knowing where to turn. I hope I can be of some support to you and others on here myself xx

Hello JenW

I am amazed that in the light of your (late) diagnosis and now being aware you have a tumour they are still giving you a hard time at your GP's practice.  If you don't have any help there tomorrow, you could try ringing the cancer department at the hospital where you were diagnosed; certainly most cancer departments don't hesitate to offer strong medication once you are in treatment but in any case they must have your full records there by now.

On a separate note, and when you are through all this and feeling better, you might want to escalate the practice's general treatment of you, I think I would be, given your circumstances.

Wishing all the luck and a very gentle hug

Irene xx