Just coming to write this update has done me good. Until I read what I wrote nearly a month ago I had forgotten how far I have come, and how much things have changed. I have had a lot of ups and downs in the last few weeks, the worst stage being a few days of really bad rectal pain, so bad that I was taking pain killers and Valium just to be able to sleep, and really felt rough. I suspect that may have been a flare up of radiation proctitis caused partly by having home made tomato soup- too acidic for my poor old bum, at least just yet.
My bowel is gradually starting to settle down, and I have also discovered a really good trick which seems definitely to help. I've only started this today, but it really has made a difference to me, so I'll pass it on; As you get better organized, there gets to be a certain time of day when your bowels decide it is OPEN time. For me this is after lunch, but everyone is different, and for some people it is after every meal. The problem for me was that I would start going to the loo after lunch and be in and out maybe 10 times or more until everything calmed down for another day, usually after 4-5 hours. This is draining, bad for your ass and very restricting, you can't go anywhere during this time, even trying to cook or do basically anything is difficult. I was taking Imodium with little effect. SO....the big secret is this- take one Imodium half an hour to an hour before the meal which gives you grief. It doesn't mean you won't go at all, (I was worried about this, weirdly!) but it does slow things down and make it all come together. Eureka! I have only been three times to the loo today! No-one who hasn't been in this situation can understand how much this means; I was getting so depressed and angry, I didn't know what to do with myself. One little tablet and everything is better.
I am back on the Metamucil by the way, I gradually built up from a teaspoon once a day up to three spoons and the gas is better. I am still not eating much fresh vegetables or fruit, except bananas, but I did have some cabbage salad and a few beans on Saturday, both considered potential trouble makers, with no bad effects. I would try to introduce more veggies, but it isn't really a good time now, because tomorrow we go on a big trip. Yes, back to dear old Chasamba, waiting for us in Puerto Princesa. It's a 36 hour journey, which means that my Imodium discovery is just in time. We leave here tomorrow afternoon and travel to Jordan by road, get on a plane to Bangkok, then Hong Kong, then Manila, then Puerto Princesa. Four flights, but thank goodness not much waiting in airports, which I hate the most, and the long flight is a night flight, so we can sleep. I hope. I have chosen seats near the loo, just in case.
I am so happy to be going home at last, even though this is my home too, and Oren's relatives have been very good to us. But Chasamba needs us, her keel plates need changing and her engine needs to be fixed, she needs to sail again, and so do we!
I will have regular check ups in whatever country we are in; my next one is CEA in May. So far my levels are; 0.8, 1.37. May will be the third since finishing treatment, and I'm obviously hoping for a low one, fingers crossed.