There are times in everyone's lives, I'm sure, when you feel as though you're banging your head against a brick wall, no one listens, no one wants to know and no one cares. I felt like that two and a half years ago. I was going through a very difficult time with my illness. I was new to enteral feeding, felt very frightened and alone. I felt alone because actually I was! It seemed as though the medical profession had abandoned me, almost like I was exaggerating the whole thing. I was left to my own devices and if I complained then that's exactly as it looked -- I was a complainer!
I'm not a complainer; if I was they'd have known about it. I endured a nightmare scenario with relative calm and patience and if I'd known better at the time, I would have screamed a lot louder. I thought it was unreasonable for me to expect the NHS to do anything more than they already were so I just sat it out.
My dietician was very understanding and called one day when I was having one of my worst episodes of vomiting and pain. Realising this wasn't right; she set about complaining on my behalf and getting right to the heart of the problem. The result of her efforts was that I got the treatment I so badly needed and total attention to my needs. The pain had been caused by pancreatitis and not some fictitious pain that I invented, which is exactly how I felt they treated my situation. My tube was also kinked and difficult to use, it wasn't my inept usage as suggested, and I was vomiting because it was simply in the wrong place. I could have ended up with peritonitis or some other 'itis' thing! It was a desperate situation and yes, I'm right in saying that my dietician saved my life!
Today, we discussed the possibility of more surgery. We chatted for a while about the implications and whether I would be better off with or without intervention. I think we both agreed that it was a no win situation, without the surgery I may choke, with the surgery things may not be better after all, and all that will have happened is a whole lot more pain and suffering for nothing. Of course, it may make things much easier or solve the problem entirely. This is the dilemma I find myself in -- no wonder I put it off till next year which in hindsight is only 7 weeks away.
Decisions like these are something we get used to with a chronic illness and perhaps we decide things a little too hastily. The promise of greener grass on the other side of the fence is all it takes sometimes but in reality who knows?