Just wanted to highlight the struggles the hospitals are having at present in all departments regarding delays with appointments..
During a phone call with my husbands specialist nurse yesterday regarding an issue with his JEJ tube I asked why after six months post esophaghectomy surgery he hadn’t had the first follow up monitoring phone call /appointment? ..These are meant to be scheduled for every three months in the first year post surgery ..So four in total …She informed me she would look into it as she didn’t know what had happened and I was correct in the fact he should have had his first one by now ….She phoned back after an hour and had scheduled an appointment for him today to see his dietician and a DR regarding his JEJ issue and had managed to schedule a full face to face monitoring appointment with his surgeon on the 10th July …SEVEN months post surgery ! ..Maybe I should’ve phoned earlier but I didn’t think due to the seriousness of my husbands illness that I would have to chase appointments up ..as it would be automatically scheduled by the hospital ! ..and come to think of it ..it was never fully explained from what date the monitoring appointments would commence only the frequency of appointments…
On his discharge from hospital in December we a letter clearly stating how important it is to attend the post surgery appointments at the hospital or take the phone calls if that’s the method used …No exact dates but It clearly states the frequency of the appointments over the full five years after cancer treatment has ended ..These are obviously meant to pick up on any issues and possible signs of recurrence of the cancer …
To say I’m disappointed in the after care is an understatement..We were led to believe a full extensive after care package would be available but from our experience this isn’t so ! ..I know the NHS system is struggling at present and all hospital departments are stretched to the max but it’s no comfort to find that after going through such a life changing experience you seem to be basically left to fend for yourself and deal with the aftermath on your own.
Apologies for having a moan because we’re all going through the process but I’ve had to vent …We are very grateful for everything that has been done for him and his medical team have been wonderful throughout .but I can’t help feeling a little angry and scared by the lack of after care ,
My husband is now on his way to have his JEJ line repaired or removed ..He’s had it in for nearly a year and I only found out yesterday it shouldn’t have been left in so long and should’ve been replaced with a fresh one six months ago whilst he was having his surgery ..but it wasn’t ! (He had it fitted in July 22 during his laparoscopy ) This should have been dealt with at his first follow up appointment which he never received !
I’m feeling totally deflated this morning !
Wishing you all the very best in your own individual journeys …regards J
