My Alex has not used his PEG for 3 weeks as he has finally succeeded in drinking his nutrition. Yeah!! We are 6 months "behind schedule" for PEG removal which we had hoped would be removed by November last year. This was not to be as the damage to Alex's swallow and lack of weight would have made it a suicide mission. Alex was devastated at the time and went into a funk over it (not unsurprising).

So today at lunch (me the meat pie and him half a dozen oysters) I suggested it was time to ring Louise (dietician) and set up an appointment to schedule the PEG removal in a couple more weeks.

His response? He wants to wait awhile in case he needs it. Except that since he realised he can drink ALL of his nutrition, he won't use it because it takes time and restricts his movement. Additionally, since he refuses to do it overnight anymore, he would procrastinate long enough to do it just before bed which would cause reflux. So, the likelihood of him using his PEG again is zero making this an excuse, but why???

One of the reasons may be that he is scared of pain. When I mentioned that it is a lot easier coming out than it was going in his immediate response was "you said the tube going in for the pleurodesis wouldn't hurt and you lied!!!" Well maybe we were told it would be quick and wouldn't hurt so much but he was supposed to forget the pain afterwards. Unfortunately, the insertion of the tube was a bit of a production due to inflammation and he hasn't forgotten it.

Is it possible he has become emotionally attached to his PEG (after all it DID save his life)?
Is there someone out there who can reassure Alex?

I wasn't sure when I was writing this if I was venting or asking for help so this is possibly in the wrong place as it turns out I actually need guidance on how to handle this and maybe get some insight into other reasons behind Alex's sudden reluctance to have the PEG removed.

Your experiences please

Karen

Karen-

I think you may have hit the nail on the head when you asked if he has become emotionally attached to his PEG. I have a friend who was a long-term PEG user who, when it came time to remove it, was very anxious and sad about losing what had become a true "friend" and support for years. It was going to be a big loss for her, and she had to approach it almost like someone would approach the loss of a relationship. All ended well, thanks to her wonderful group of outside supporters who gave her encouragement and strength. I wonder if this is also somewhat true for your Alex.

Best of luck -- I'm happy to hear he is able to drink! That's real progress!

Karen - It's true!, we can become emotionally attached to anything, and any situation. It has to do with the fear of the unknown even if the unknown brings a good change, it is too easy to stick with the familiar because of the feeling of control associated with it. It happens all the time. That's why so many women will stay in an abusive relationship because it's something familiar that they gotten used to and they fear the unknown, even if the unknown brings all good things! (I know, I stayed married for 20 years in an abusive relationship). Any change, even a good change brings stress. Tell Alex, he doesn't have to stay "married" to Peg. He's already started a new relationship with "D" (drinking his nutrition)!

I was very scared!!! I know the PEG saved my life during and after several major surgeries....BUT every morning in the shower, getting dressed or just feeling it in and around my stomach, I couldn�t wait until I could maintain my weight without using it. I complained regularly, and wished I could get the damned thing removed. I had a PEG for 3.4 years. After about 2 years, I was managing everything regarding my nutrition. I didn�t have any help/regular checkups from a nutritionist.

Once I was well enough to swallow my daily calorie intake, knew I was not having further major surgeries and wouldn�t need it again, I focused on taking everything orally (except tablet/capsule medications). I contacted the visiting nurse to have the PEG tube removed the following week.

Once my appointment was booked, the thought of getting it removed started to scare me. I was thinking perhaps I should keep it for a big longer �just in case�. The "what ifs" played havoc with my mind. Many times I nearly dialled the number to cancel the appointment. I started to panic, and might of continued in that mindset for months, except the tube was worn out and looked like it could split any moment creating further dramas. I had it removed as planned. Due to my damaged airways I can�t swallow tablets or capsules, so all medications are prescribed in liquid form.

A couple of days after the PEG was removed, my mind settled down. I was thrilled and proud of myself for taking a huge step having it removed.

For me, knowing I had a PEG incase anything happened (as it had, and does) gave me peace of mind and security knowing I wouldn't have to put myself through further pain trying to maintain my weight and get medication down my throat if need be, without choking. I knew emotionally and physically I didn't want to put myself through any more drama, it was difficult taking the final step.

Karen

Thank you people for your insightful comments.

I was talking to a friend today who has done the cancer roller coaster herself. She suggested that he may not feel equipped and ready to face the future yet. Keeping the PEG allows him some chance of controlling the pace of moving forward. This idea resonates as I know that Alex's attempt to go back to work was a little premature and did nothing to help his confidence. As a consequence, his fear of moving forward and subsequent failure (his perception, not anyone else's) is high.

Karen, thank you for your comments. As an actual PEG user and recent ex-PEGGER your own experience suggests that his reaction is not abnormal. He too uses the phrase "just in case" when we discuss it.

he needs to be reminded about how brave he has been through everything and that he can do this. It is not the walk in the park we thought it would be and his reticence is understandable but unfounded (well, maybe not unfounded so much as not as big a deal as he imagines).

Again, thanks everyone.

Karen