The Feeding Tube

I haven't posted anything for a while because, understandably, I'm pretty exhausted by the end of the day!

Our days are busy with my treatment and appointments to see the doctor, dietician, nursing staff, and the dentist.  A good proportion of our day is taken up just with our time at the hospital or dental hospital. Feeds, medications, and resting generally take up the rest of the day.

The treatment is still progressing well. I've been seeing the doctor each day to assess whether or not I can keep going on with the planned treatment schedule. As this planned schedule has only two more days of treating the broader area before reducing down to treat only the primary cancer site, I'm hopeful that I can continue on. It has been borderline all week whether or not they postpone the treatment to allow my body to heal a little before resuming a week later. You might recall a comment in an earlier post where they were trying to balance the need to treat me without killing me in the process. Seems I may be dancing close to serious. But my preference is to keep going while I can still manage it. Based on what little we know of this cancer, I feel like this is a one shot opportunity and don't want to compromise my long term outlook.

So now I have a feeding tube in. I hadn't liked the idea of the feeding tube and wanted to just persevere without it if possible. Last Friday evening, though, it had gotten so painful to swallow even just water that I was in tears knowing that I would need to get the feeding tube. I spent the weekend barely able to drink anything and ended up loosing two kilos in two days! Monday morning the dietician arranged for the tube to go in. We got a detailed explanation of how to care for the tube and how to use the tube, plus cleaning and caring for the tube. It sounded overwhelming but now that I've had it in for a few days its actually surprisingly easy to use. And, most importantly, I can have my tinned formula without any pain.

Someone asked me today how the boys are coping with it all. They seem to be coping really well. Ryan has been a terrific encourager, giving lots of hugs and thoughtfully asking about very specific aspects of my treatment.  He was initially concerned when he saw the tube. He wanted to know if it hurt at all and was visibly bouyed when I was able to tell him, no, it just feels weird.  Matt has been great too, very loving and cuddly. When Matt saw the tube his comment was, now how am I supposed to kiss you? When I replied he could still kiss me on the other side he came over,  kissed and hugged me and let out a loud, Phew! Nate seems to be okay for the most part. I can't hold him as I'd like too in case he pulls the tube out. His routine is completely out of whack now that we've been out and about during the day and he's not getting his lunch, sleeps or bottle at the usual times. Unfortunately, he's been waking up overnight too, about 2:30 each night and poor Steve is struggling to get him to resettle. He even put my dressing gown on the other night hoping that Nate might think it was me. After initially cuddling in he pulled back with a puzzled look at Steve before nuzzling in again. Hopefully he will get a full and good night tonight! I just really want to see Steve have a good night sleep too!