Last Update (21/05) - Ho Hum, Seconds out - Round 4!

Hi Peter.  You are being so calm and practical.  I am sending you all my very best wishes. Thankyou for writing about what’s happening. Lizzie x

Sorry you did not get the best of news yesterday and all I can say is best wishes.   

Sorry you got the bad news yesterday, but lets hope this time they get the thing before it goes back into hiding.  Whatever treatment they decide on we have to go with as they are the experts, as Hazel says plenty of experience on the site to help you through.  But understand that feeling 'do i really have to go through this again'.  Best of luck and keep positive.

Mo

I've got to say that my hospital is totally amazing - and not just this time around!  I had "the conversation" yesterday late afternoon and this morning the various departments were on the phone booking me in for scans and dental checks working their best to meet my personal calendar as well as the clinical priorities.  Everything is next week and I anticipate the MDT at the tertiary hospital on the 5th December - and that delay is only because I am away the previous week.  I know not everybody has positive experiences, but at the moment the NHS rocks !

PFJTHS said:

I've got to say that my hospital is totally amazing - and not just this time around!  I had "the conversation" yesterday late afternoon and this morning the various departments were on the phone booking me in for scans and dental checks working their best to meet my personal calendar as well as the clinical priorities. 

How on earth do you do that, Peter? 
I have patients waiting weeks for diagnostic scans only for appointments to be changed at the last minute, treatment delays beyond cruelty and no communication with support staff. 

Hi I was lucky I was pre covid  and everything worked  like clockwork. Dental check day after diagnosis mri ct  and pet within weeks. Nowadays like Dani I’ve people waiting for scans cancelled biopsies and no dieticians and that’s not all up north  the southern coast as well. What’s the secret ! Peter 

Hazel  

Really sorry to hear that Peter… thinking of you and sending just positive vibes  

marta x

I think it is mainly down to communication.  I do believe it is how you engage with the staff in a hospital that makes them want to go the extra mile or just put you on the pile.  I am lucky in-so-much that having worked in the NHS I know the system and how to make sure it delivers what it should, but rarely do I have to use that knowledge.  For example if I know I can't make a specific date then I will let my consultant know or ring the booking clerk before they make an appointment and discuss.  That way they don't waste their time; or mine.  NHS staff genuinely want to help and will do if we make their life just a little bit easier.

I also won't stand for any nonsense.  For example if my clinic letter or discharge summary says follow up in a certain time frame then if I have not heard I will chase it.  I am also not scared to go to PALS if the "system" has let me down (only once and not my local hospital).  Without raising, at least, a "concern" (not always a complaint) then the system will continue to fail other patients as it knows no better.

A week of scans and reviews over and done with.  CT on Tuesday, dental on Thursday and MRI yesterday on Sunday.  Hopefully I get all the results on the afternoon of 5th after the MDT meeting that morning.

The good news is that I get to keep all my teeth if I go on to radiotherapy.

The not so good is that the CT contrast left me absolutely shattered for 24 hours and I was in the  MRI for 70 minutes!  I was trying not to fall asleep and the scan was so long that the music ran out just as I received contrast - and I was counting the tracks to helped me judge the passing of time.

Good luck for next week. I kept all my teeth too which was a blessing