RIG fitted eventually - 3 weeks of treatment left

Hi all - updating on my RIG being fitted and starting week 4 on Monday!

My hospital trust policy is for everyone to have a RIG fitted. Unfortunately they kept talking about it but no-one could sort it out due to bed capacity and staff holidays...  Finally I was told it would happen on Monday  18th - I was told to come at 8:30am for RT then I'd have the procedure and stay in overnight. I sat around waiting over 3 hours, then got told no bed available and could I come back the next day and I'd definitely have a bed. Hugely unimpressed and very hangry as I had been nil by mouth all morning on the hottest day of the year, could barely speak or swallow my mouth was so dry; I asked to see the ward sister /manager and a Dr.

Long story short, my oncologist and the ward head promised Tuesday would go ahead. My oncologist was also unhappy and tried several routes, but moving it to Tuesday was confirmed as I'd missed my operation slot!

Tuesday - no bed available until end of the day so I was looked after on the day ward initially (cannula put in for my fluids as I wouldn't stop nagging them!), went for the op, got moved into triage where a bed was set up for me in the corner right next to the coffee machine. Fawlty Towers springs to mind. I was drowsy so just dozed. It was a very hot day and all I could do was swill my mouth with water to wet it. Not ideal. Torture!

I ended up staying in for 2 nights, didn't feel confident enough and not on top of the pain management. Given oramorph and IV paracetamol. Oramorph helped with serious pain and especially when taken just before my RT sessions. I have had to unlearn using my core for every movement., which after decades of pilates is very hard! Getting into bed was excruciatingly painful and of course I had to have help laying back on the RT plank. All in all, having the RIG was very painful for 2 days, bit better yesterday and even easier today. But if I cough (which I'm trying to avoid) the pain is unbearable. Hopefully it will settle down soon.

Otherwise: Very little saliva. All food tastes of nothing. Mouth soreness slightly better than last week. I'm now at the food is fuel stage. I can fall back on the RIG whenever I may need it. I may end up doing a mix of eating bland food to keep chew/swallow going, but topping up with high calorie stuff I can put through the tube, as necessary.

I'm trying not to get de-moralised, but I am bored of this now! To top it off I've got chemo (last one!!) on Monday (yuck!). BUT at least once next week is done I'll be closer to the end than the start of my treatment   .... So, just to prewarn you I may be back on here next week feeling very sorry for myself LOL!

Helen x