Immunotherapy

Hi , ouch that sounds really bad. Is there not anything they could give you for the night??

So sorry to hear about your pain.

Pain at night time often indicates inflammation, so slow release anti infammatories, if you can tolerate them, might help.

I've had a lot of pain from bony mets at times, awake and in tears at night, and found ice packs helped the most  or cooling gel like bio freeze. The important thing with ice packs is to protect your skin and use them for a maximum 15-20 minutes at a time, cooling gel can be used along side them and you can alternate with heat packs for the muscular pain. Ice cubes in a bag work really well.

It's worth speaking to your Oncologist or GP because there are specific medications for nerve pain that are prescription only.

Good luck! Pain like that is so draining and debilitating. xx

Hi Gsd Rule 

That sounds truly awful.  I had pain that woke me at night for months last year and it’s exhausting. I was able to find a pain medication regime that’s worked for me but if I hadn’t, I was going to try acupuncture and visualisation techniques. I’d got as far as finding this:

https://www.pathways.health/visualization-for-pain-relief-management-the-ultimate-guide/

As I say, I haven’t tried it myself but I’ve got it up my sleeve for the future 

xxx

Thank you all again for replies. I bought a spine alignment pillow to see if it helped, it didn't, Riley very happy with his new pillow tho.... I'm back in hospital on Monday for next lot of immunotherapy and have booked to see the palliative pain people while there. I manage to sleep for an hour and awake in agony, take a liquid morphine, sleep again for roughly 45 minutes to an hour and so it goes on. Been sick during early hours of this morning but no idea why as feeling OK again, just exhausted. Hope everyone is doing well xx

I will look into this Daloni thank you xx

Hi Gsd Rule 

jeez that sounds awful. Morphine can make you sick - but I’m not a doctor so I can’t give you any medical advice.

Are you able to talk to your oncologist and your GP about the pain? When I reached the stage of needing morphine I was very quickly moved from swigging the oramorph liquid to taking three slow release tablets a day to slow release patches that I change every few days. But I needed to pipe up and ask for help. 

I know I started out thinking someone would sort out this kind of thing for me but I’ve learned over time that I have to be the project manager of my own health. My GP and oncologist are both very supportive; I also get back up from the hospice nurses.  They only know what I tell them. So if I tell them I’m struggling with pain or nausea, for example, they are responsive. 

I hope this is helpful and not just desperately patronising 

xx

Hi Daloni, not in the least patronising, I appreciate everyone's wisdom on here. They gave me oramorph at the start, it did nothing. Now on a lidocaine patch twice a day with oxynorm liquid for when I wake in the night, part of morphine family apparently. They had me on 3 morphine tablets a day but I was constantly asleep 24/7 so felt it was pointless . I am seeing palliative pain people again on Monday. They need to do something, they will hear me Monday! I just can't go on like this, it's not fair on me or my hubby who is also awake in the night as I am up and down. Thank you for your reply, I will sort them on Monday... Xx

Ah that’s good, Gsd. I think maybe I’m just lucky. I don’t find the opiate pain killers knock me out too badly. 

I really hope they can sort you out on Monday. 

xx

So, I had bloods taken Friday morning in preparation for 2nd lot of immunotherapy on Monday, infection markers were up, I explained I had been sick early hours of Friday morning, otherwise I felt fine. Chemo nurse called me Monday morning to ensure I had no signs of infection or illness so all was good to go. Got to hospital and temperature was up... Think it was just the stress of it all, they left me settle for a bit and by luck temp came down and all went well! Had Reiki during it, I think it's amazing. Seen the palliative pain ppl, they have given me a new tablet to take at night along with everything else, apparently this one focuses more on nerves. Monday night not brilliant, last night I only woke 2/3 as opposed to every hour, and not so much in pain just a bit uncomfortable. Just had 2 lots of oxycodone last night so a huge step in the right direction. Feeling more like myself. No tears of pain or frustration last night, I feel brand new. Fingers crossed I've turned a corner. 3rd lot of immunotherapy 30th march then scan 6th April. Hope all are doing well. Xx

That’s great news, Gsd Rule. I’m so pleased you’ve got on top of things. 
xxx