Non site specific pathway hand hold

[Words]

Has anyone had any experience of this?

After months of rapidly deteriorating symptoms - I am now so weak and breathless I can barely walk - and nothing but lengthy referrals to various specialists - I was referred to the non site specific team and things are now moving very rapidly. CT MRI endless blood tests and finally, saving the best till last, endoscopy and colonoscopy booked for tomorrow.

I've been so focused on getting through all the procedures I have put the results to the back of my mind. Now I am getting a bit scared hence the post.

The co ordinator called this morning wanting me to move forward a couple of outstanding blood tests from Friday to asap. This is not proving to be very straightforward but has made me feel uneasy.

Anyone?

I don’t have any experience of what you have mentioned, but have had a recent cancer diagnosis and can sympathize with all the tests and waiting for results. Have never felt anxiety like this. I hope you find the answers you are looking for.

Thank you. @Notjustabrunette . Sending 🌺

My issue is there are no red flags as such individually for any particular type of cancer and it may still turn out to be nothing, or trivial,

Or not.

Cant fault the NHS on this though. Since this non site specific team have become involved things have moved at Lightning speed after maundering on for months with no answers.

I wish you all the best brunette. X

I don't have any experience of this pathway, but I can relate to what you say about being focused on the procedures and then the results part dawning on you.

The wanting to rearrange the tests might just be about efficiency. E.g. they could be looking at when all the various results will come through and want them all together for the next case discussion meeting so they can come back to you sooner. It might not be anything heavier than that.

If you can, try to distract yourself with nice things and just take it one day at a time until they have the results ready for you. I know that easier said than done. It's encouraging that they're being so thorough and hopefully they will get some answers for you about why you've been so poorly.

Thanks @sandrevolutionary . Kind words and they mean a lot.

Back home after latest tests. Colonoscopy not too bad. Endoscopy - caméra down throat- was awful.

As you say I am very lucky they are bei g so very thorough.

Oh and thanks about the meeting. I think that might be right and doubtless there are targets to be met with this pathway.

I have no words of wisdom for you but I am really sorry you're in this situation and I do wish you all the very best. ❤

Sorry you had a rough time with the endoscopy. I found that particular test pretty hideous too - I think lots of people do. If it's any comfort to know you're not the only one! IME once your throat feels back to normal, the rawness of the experience goes too.

I hope you manage to have a peaceful weekend and the memory of the endoscopy fades rapidly for you.

Thank you @sandrevolutionary . I'm sorry you had this also. My throat feels fine now but the memories are still vivid and intrusive. Trying to find things to distract my mind.

They want to do the same thing but through the nasal passageway as they didn't get quite enough view as I simply couldn't tolerate the last bit.

NO sedation for that so I do t even get briefly off my head on fentanyl! Fortunately not for another six weeks or so.

Oh, that's not one I've had the pleasure of! Hopefully it will be a little bit easier. I'm glad you get a little bit of a break before you have to go back for that one.

If the intrusive playbacks are bad, see if you can identify some really soothing distractions or activities. That will help settle your central nervous system and re-establish a sense of safety in your body. Your brain/CNS are probably still a little bit like "what the hell?!" with danger klaxons blaring at the moment.

Even really small things like holding a soft pillow, wrapping yourself in a soft blanket, smelling a comforting fragrance can help. There's some research that suggests holding soft and cuddly items has a measurably soothing impact on the CNS. Soothing your CNS will help your brain process the memories and file them away rather than replaying them so much. Time will help too.

Oh that makes so much sensé. I was actually yearning for a squishy soft toy. I have my childhood Teddy but he is quite firm. My darling cat was killed last October and he would have understood and helped.

I will see what I can find online . I also love beautiful scent.

It's funny how sometimes we just instinctively know what may help without realising. I'm sorry about your cat though, that's never easy to lose a close bond. Animals can be so tuned into us.

It sounds like you've had an awful lot to deal with lately. I hope you managed to find some things that have been helpful.