New here - struggling with pain

Can you be referred to a pain specialist either through your GP or through your oncology team. I have found the pain clinic nurse and consultant I speak to and I’m due another face to face appointment with very useful.

Sorry to hear you are in a lot of pain. It is not something you should live with. Can you ask to be referred to your hospice/ palliative care team ASAP? They are very good at managing pain and improving your quality of life. 
Hope things can improve soon do you. 
Stella x

Hi Rosie, welcome, 

You need to go back to your team and tell them your experience, so that they can give you something for it.  And if you aren't given anything, then you need to protest!  

I remember once I was in discomfort (not pain) and mentioned it.  Nothing happened.  I was in the next week, even more frustrated, and I really articulated it much better!  I think the end line was something like ". . . and I told blah this, then I told blah, and you all did nothing about it!".     My feedback was quite clear!

I had a phone line open during the day for concerns.  They never answered it, (by design) but it went to an answering machine and they'd get back to me that day.   

Hi Rosie, I find your best going to your own doctor for pain relief I have been a few times with back and hip pain as my cancer is in my bones and they have been great . Give them a wee phone see how you get on 

Angie 

Hi Rosie, welcome to the group, full of the most friendly and empathic people around, ready to lift anyone's spirits. So sorry to hear that you are suffering with pain, I know exactly how you feel. My pain isn't linked to my incurable bone marrow cancer, it's spinal stenosis that I was diagnosed with 3 months after my cancer diagnosis. 

I had to leave work because it wasn't possible to continue, before I left I asked my GP if he could relieve my pain to which he replied he would. I started with morphine patches, then morphine sulphate tablets building up to a very high dose. Next stop was the chronic pain clinic at hospital but still the back pain persisted and hasn't stopped. Night and day. As soon as I stand, the pain begins. 

I don't let it get me down, I am a very keen gardener so doing that takes a lot longer due to compulsory rests. My wife had a hip replacement 7 weeks ago and for 4 or 5 months before it she was in quite a lot of pain herself and for 6 weeks after the operation it was tough going for both of us as the house wasn't going to clean itself!

You have the right attitude Rosie, keep positive and keep smiling and laughing and don't think that any post is not uplifting, we'll be interested in everything you say. 

Take care Rosie 

Tvman x

Hi EllieKate, Stella and Mmum,

Thank you for the replies! Really useful to know what works and also of course to generally vent when things get tough. It’s sometimes really hard to access the right help. In this case the palliative care team - pain management dept have helped. 

I find I need to be really pushy as help and support is not always automatically offered.

Saying that, obviously  I can’t complain - far from it, the community nurse came round yesterday and did some jiggery pokery with my current meds and added in some new ones. I actually slept last night as the pain had subsided enough to do so - such a relief. Couldn’t thank her enough. The pain seems to be beyond the GPs knowledge as the meds given were not effective on certain parts. I think they will do a scan on January to determine the cause of the pain. I think it could be that the tumour is pressing on the spinal chord and causing nerve problems.

I feel far more human, not pain free as such but able to get comfortable. Feeling positive and festive today :-)  what a difference. 

Tomorrow I see my granddaughter who is 10 months old, one of those lovely days when cancer doesn’t get a look in regardless of how I am :-)

Rosie

xx

Thanks Angie, I did try them initially but have now moved to the pain management dept (palliative care team) as they were unable to control the pain. 

Cancer in bones sounds painful? What do they prescribe for that? It does all seem a little trial and error but I guess that is understandable as everyone responds differently.

Hi Rosie I hope you’re feeling better today I’m glad you have the pain management team o. Your side , and yea I’m okay with the pain I’m on mst continuas and oral morphine when I need to .its hard dealing with all we have going on on but it’s great that family mucks in and I hope your pain free for Xmas

angie 

Hi TVman, 

Gosh, you are a real inspiration! All that pain and still managing to keep active. I do love walking but like yourself standing up triggers the pain level to increase - I don’t seem to be able to stand for long at all. Saying that, there are days when for so reason there is relatively little pain - I do make sure to go out when this happens! Even a short walk tends to reset the brain for a while. 

I agree the group does feel friendly and empathetic, I look forward to chatting to more people soon. 

All the very best!

Rosie

x

I take both of those too Angie, I also take paracetamol with the oramorph. This was upon the advice of the team as apparently it maximises the effectiveness of the morphine. 

It’s true, we do muddle along and it is very hard but I suppose I’ve learnt that not everything is a priority - just got to let things go.

As for Xmas all shopped for online, a first as I do love a Christmas shop! Probably saved a fortune though

Take care

Rosie

x