Towards the end of treatments is when the going gets tough. Unfortunately, when having rads, it gets progressively more difficult as treatments continue. Even after the rads end, they are still working and the patient will continue to feel lousy. There is a bright spot, about 2-3 weeks after finishing rads most patients begin to feel a little better. The recovery phase can be a long process full of ups and downs. About the only thing that can help is to focus on what is within your control, that is his intake and pain management.

Make sure Larry is not in pain. Most of us have had to change our pain medication dosages several times thru out treatment and recovery. If the pain can be controlled, the patient is more likely to better manage their intake. If he can take a few sips of water several times during the day this will help keep his swallowing muscles active and make recovery much easier. Believe it or not, a patient's swallowing muscles can actually forget how to properly function and they have to relearn how to eat and drink again after rads.

Every single day his minimum numbers to take in are at least 2500 calories and 48-64 oz of water. Remember all the formula he is taking in has water. I suggest buying the little mini water bottles and setting a couple out every morning. This will help create a visual goal for him to achieve, hopefully making it easier to track. I know how difficult it is, Ive been there and struggled too.

Ask the doc for a prescription to get extra hydration a few times per week in the chemo lab. This will help him to feel a little better. At least it worked for me, I always felt like a new person after getting a couple bags of saline. If Larry is dehydrated, he will feel horrible. It happened a few times to me and I was hospitalized. Its not fun but it is always an option and if its necessary to get thru the next few weeks then it might need to be done.

Please keep in close contact with the doctors and nurses about Larry's problems. They are the professionals who need to watch out for his best interests. Too frequently, eliminating the cancer is the only focus and everything else is viewed as collateral damage and is ignored. As the caregiver, be a strong advocate and let the team know everything you explained above.

Hang in there and dont forget to take some time for yourself too. Being a caregiver is a tough job! Be good to yourself.

Best wishes!!!


PS... As far as the pump speed, its very low. If he has been at that speed for over 10 days, try bumping it up to 75 or 85. Give that speed about 5 days then push it up to 120ml. At the current rate of less than 60ml, its less than 2 oz per hour and not nearly enough. Ask for a nutritionist who is experienced with PEG feedings to get Larry on a formula with higher calories. You may need to add some water to it. Also make sure he is sitting up or at least has his head raised by a couple pillows when doing feedings.