Rig help

this morning i cannot bring myself to drink anything so had to use rig so i dont think it will be coming out in 3 weeks time but iam not going to tolerate a rig change my cns has hit the nail on the head as it caused me so much pain i was basicly bed bound in hospital for 16 days that ive become phobic of it which is an emotional response to it so i dont know how iam going to cope with a rig change when i cant let noone touch it to clean in including myself iam so sick of all this now i hate this rig so much it makes me cry today is not a good day already unlike yesterday this recovery really is up 1 min n down the nxt xx

All you can do is your best, which you are doing.  I am sure that not everyone reacts in the way I have to the treatment, but in my case my mind has dulled the horrendous bits and refreshed the good bits - and there were some.  Now 8 months on from treatment I really have to think hard as to how bad it was so I can offer sensible advice. 

Hold onto that fact as you may look back on this terrible time you are having and not really remember how awful it was. 

Sending virtual hugs

Thanks Hazel enjoy Spain xx

Many thanks. Does everyone need a PET scan at the finish of treatment? Sue 

Not everyone gets one.  There is no "need", but it does help confirm that the treatment has been effective.  Many will just get MRI scans which can still tell if the treatment has worked, but are, perhaps, just not so easy to see as the PET scan is. 

Neither but most centres like to do a follow up scan. Swansea used to do an MRI at 12 weeks till they got access to PET so moved over to that at around 16 weeks. 
I had an MRI at 12 weeks which was clear but they decided to send me for a PET too. That’s when the fun started. My PET showed a hotspot so you can imagine how devastated I felt. Thankfully a biopsy was clean but heavens, there were a few tricky weeks! 

i thought it b a c t scan or hoping it would be as i cannot do m r i scans iam to claustrophobic i had to be heavily sedated for 1 i had many years ago long before my cancers ive never seen a pet scan x 

ive managed 2 by mouth but had to put other 2 thro rig so they not going to let me have it taken out in 3 weeks time but its been a crap day all round for me today x

dpanky said:

i thought it b a c t scan or hoping it would be as i cannot do m r i scans iam to claustrophobic i had to be heavily sedated for 1 i had many years ago long before my cancers ive never seen a pet scan x 

I think PET is pretty universal these days. There are even mobile scanners.

The scan itself is just like two passes through an open CT machine and doesn't take long. There is an hour's prep beforehand. You get an IV of a radioactive tracer then you have to sit quietly for an hour while it circulates and settles in your body then you are scanned. The first scan is a simple CT, providing a sort of map then the second measures the radioactivity which is then superimposed on the first.

The advantage of the PET is that it does the whole body. An MRI just scans your head and neck

hi just thought i would uodate you on how well iam doing iam on day 6 now no tube used and managing my fortisips and bits of food each day and my daily intake of water this tube is coming out real soon xx hope u all ok as well xz