Decembeard

Life with bowel cancer

Sarah Morgan

Pain clinic appointment at the Christie

Ian had his first appointment today in the pain clinic at the Christie to discuss his chemo induced peripheral neuropathy. It was a very disappointing, unsatisfactory experience & we are very likely making a complaint, the reasons behind which I will not discuss here.
Just wondering if there are any of you who’ve been seen in the pain clinic & what your experience was.

ElaineG

Hi @Sarah Morgan, sorry to hear of your bad experience at The Christie. Was Ian seen in the Private Clinic or under NHS? Chris was seen in the private clinic 12 months ago for chronic pain in his rectum and pelvic area. :x::x:

Sarah Morgan

It was the NHS clinic with a nurse. Who did Chris see?

Gypsy

@Sarah Morgan . I know of several people where I live who have been dissatisfied with the pain clinic, basically having been given the impression that their debilitating, chronic pain can be managed by a combination of mind over matter and exercise. I know that they often don't go back.

Bear G

Hi @Sarah Morgan and @Gypsy
I did some work with pain clinics a few years ago specifically in the area of chemotherapy induced neuropathy. There are tablets and patches that they can prescribe but they have to try other things first. I know that may seem frustrating but it’s within the licenses of those treatments and all the guidelines say the same (or they did 4 years ago).
It’s definitely worth persisting with the pain clinic and maybe asking to see someone different.
Big hugs
Bear
:x::x:

ElaineG

Hi @Sarah Mo

Quote from @Sarah Morgan: Chris was with Dr Berman
It was the NHS clinic with a nurse. Who did Chris see?

Sarah Morgan

Thank you as always @Gypsy, @Bear G, @ElaineG .
Ian tried Pregabalin previously & we had been made aware of alternatives like patches etc but they were not forthcoming with offering anything & I had to actually bring them up in the conversation.
At present Ian does not want to go back but if he changes his mind, we’ll certainly ask to see someone different.
Ian had an acupuncture trial previously & had a bad experience with the therapist & there has been a breach of patient confidentiality regarding this. We went hoping to get some help but it’s just caused more stress 😧

Bear G

Hi @Sarah Morgan
I’m sorry you’ve had to deal with this on top of everything else you’re facing, so unfair.
Could I suggest reporting all this to PALS so they can investigate it and plug the gaps?
:x::x:

Sarah Morgan

I’m back in work (at the Christie!) on Monday so am going to speak to PALS then. Thanks @Bear G :x::x:

Baxter2

Gosh, I'm sorry to read this @Sarah Morgan

I've yet to hear of anyone who is actually satisfied with the input from pain clinics. It seems to be that there's a very long wait for appointments and when they attend, they are seen and sent away feeling very let down and disappointed. I wonder what's going wrong?

K💛💜💚💙❤️

Sarah Morgan

Thank you @Baxter2. Ian didn’t actually wait long for the appointment but it was so disappointing & they seemed more concerned about his mental health than his physical pain :x::x::x:

Sasa

Hi @Sarah Morgan , so sorry to hear about your poor treatment, what an utter disgrace! 😠

Sarah :x:

Clancy

Hi @Sarah Morgan, I wanted to PM you but couldn’t figure out how to do it. I wonder if you could be referred to UHSM? I do know they have a long standing pain clinic there. The only reason I am suggesting, I do know Ian had lung surgery there, and if he is not keen to revisit the previous clinic. Maybe the chemo induced neuropathy is completely specialised to the Christie. Do let us know how you get on, sending hugs.:x::x:

Sarah Morgan

Thank you @Clancy. I too am aware of the UHSM pain clinic but as you say, because Ian had chemo at the Christie & the treatment caused the neuropathy, I think it is specialised to the Christie. How are you doing?

Clancy

Hi @Sarah Morgan, I am good thanks, on chemo at the moment with the added Panitumumab. I just have to remember the strict skin regime now that the weather has changed, apart from that entirely doable. Christie have changed the antiemetic from Aprepitant to Rolapitant, it’s even better just two tablets a treatment commencing and antibiotics are now Lymecycline apparently more kidney friendly than the Doxy.
I do hope Ian gets the neuropathy sorted, I was lucky really because I wasn’t on Oxaliplatin for long. It’s amazing how debilitating it can be.
I am on the steroids at the moment so I do tend to chat on. Anyway keep us posted, you are both marvellous by the way for the swift return to work. Take care.:x::x:

Sarah Morgan

@Clancy, good to hear that you are managing well on your current regime. Ian took Aprepitant with good effect so great news that there’s something even better. Ian had the Oxaliplatin for about 8 cycles & at that point, the neuropathy subsided but then it came back with avengeance & has persisted. Most of the time he just gets on with everything but he really could do with some respite from it. Take care of yourself too :x::x: