Looking around after the event....

There comes a stage after the long hard fight when you can look back and evaluate everything that happened, everything that you felt, and how that affects the rest of your life.
 I fought cancer for a year and a half with all my strength, and I am still fighting to overcome the residual effects. Now, though, I feel strong enough to see things - and people around me- clearly. I have read many conflicting accounts by cancer survivors; some say that they felt an incredible amount of support from everyone around them, others were more down to earth and said that people treated them no differently. For me, I feel that cancer was a watershed.
Before cancer I had no way of knowing who my friends really were. When I was lying in bed feeling too weak to get up in the middle of chemo, when cold water hurt to drink, when I was lying in intensive care after barely scraping through an emergency operation for peritonitis, it suddenly became apparent, very apparent. Luckily for me I was and am surrounded by people who care for me, first of all my wonderful partner, Oren, who took a lot of s**t when I was on the steroid crash once every three weeks during chemo, when I was hurting after each of the three operations I had, and when I just felt crappy, and kept on through it all, doggedly determined to see it out. My daughters all kept in touch and visited as often as they could, and my parents emailed regularly and visited from abroad twice during this time. Waking up to see all my daughters and Oren peeping round the door to the recovery room after the last operation was the best present I could possibly have got, even though they were hustled out by the nurse immediately. I knew they were there, I knew they cared enough to be there, and that gave me so much strength. Oren's family too, tried their best to help, although I think they were a bit scared of me. I was thorny, I know; I am thorny at the best of times, and these were not the best of times.
One of the best things which happened in this time was that I got back in touch with my best friend from way back, and she gave me another valuable source of strength and comfort,another shoulder to cry on and a good laugh too sometimes.
With all the good has to be bad; how would we recognize good otherwise? Those who tried to push religion, quack remedies, internet rumours of a miracle cure...And those who just didn't care enough to stay in touch. Those who never sent an unsolicited email, or sent one, and then forgot about me. Those who didn't visit, or offer to visit, those who never picked up a phone, once, to ask how I was. Those people are no longer on my Christmas list, and silly as it may sound, it took something like this for me to take them off it.

Two Updates in One Year!

Yep, me again. Just thought I'd check in and say that all's well. My surgeon was happy with everything, after prodding my smiley face stomach ( which he is responsible for, anyway...) and shoving his finger where the light don't shine, AGAIN! I hate that. But I do like to be told that everything is ok.
So we will be off on our next adventure soon, my grandchild is doing well and will probably be talking by the time we get back, laden with cuddly toys, I expect!

Sorry!!!

For all, or should I say any, of my faithful followers who have been checking back to try to find out what is going on; I am really sorry for not updating for so long. I always hate it when I am crazy to know what is happening with other people and they don't update, and hey, here I am doing the same thing.
So; I didn't do any CEA tests after the one in Palawan. Scared to, really, and I just wanted to forget about cancer and do something else, which is also why I didn't write anything. It's been almost nine months of ignoring cancer, and it was great, except for the nagging feeling at three in the morning that I really should be checking...
We arrived back in 'reality' a few weeks ago, and the first thing I did was to make an appointment with the doctor. Reality means Israel, modern medicine, lots of people who ask you what is going on, so basically no choice but to go and get tested. My CEA came back as 1.78, which, while not as low as I would really like ( I'd like 0) is reasonable. It is lower than the result nine months ago, but higher than those in the same lab a year ago. Let's say I can live with it. ( Black humour...) Then I went for a CT of chest, stomach and pelvis, so all of me more or less, and that was clear, which, frankly, amazed me. Now I am waiting for my check up with the surgeon who did my operations, which is on Wednesday.
The real reason we came to Israel is to be here for the birth of my first grandchild. It seems so strange to be a granny, but that is what I now am! The baby is lovely, and my daughter is fine, although the birth was extremely long and she had pre-eclampsia. It is so good to see everyone here, and my parents will be here soon too, so I'm hoping to get a few good 'four generation' photos.
We have big plans for the next year or so; I feel as though I have been given a chance to have one last big adventure, so we will be going back to Chasamba on the 27th of February, and after stocking up as much as possible we will set sail for Papua New Guinea and the Solomon Islands, stopping at several tiny atolls on the way; Helen Reef and Ninigo atoll, two of the most beautiful places on earth. See those and die! ( Too much black humour?) After that we will decide whether to carry on south down to Australia or go north east up to Micronesia. So, there will be a few months that this blog won't be updated, but hey, you're used to that, I guess. (Sorry again...)
Actually I am having a hard time getting used to the idea that I'm not going to die just yet. I was pretty sure I was riddled with cancer and just about to start feeling it; having a clean scan really threw me. I suppose that's just my way of dealing with all this. If you resign yourself to the fact that you are going to die, you can concentrate on living meanwhile. We have done so much these ast few months- Chasamba was in a terrible shape when we got back to her, and after overhauling the engine we sailed  to Carmen on Cebu island and got her hauled out of the water. Non too soon, she had lots of rust and several places where the whole thickness of her bottom was rust, so that any little bang would have sunk us. Chasamba has cancer too! But we cut it out, welded her back together and scrubbed her, painted her and did lots of work which hopefully will keep her afloat for a few more years.

CEA Results

I'm getting slowly but surely back to a semblance of normal, as far as digestion is concerned, anyway. I now know for certain, after a lot of trial and error (mostly error, ouch!) that at the moment I cannot eat any vegetables at all, no garlic, no ginger and no chili, pepper or paprika. As long as I avoid those, life is reasonably good, and if I don't forget  to take one imodium in the morning and another before lunch, and also take Metamucil with every meal, things are even better. I can go out for hours and not worry too much, and on Sunday we went for the buffet lunch at the Yacht Club here in Puerto Princesa and stayed for four hours after a large meal talking to other cruisers- I was fine! I can eat some fruit, like papaya, which is really good here, and bananas, so I can get enough vitamins not to get rickets!
On Monday I went to do my three monthly CEA test. I don't know how to react to the result, really. It was 2.14, which is an increase from the last test. Since finishing chemo I have had three tests, the first was 0.88, the second 1.36 and now 2.14. It looks as though the CEA is slowly creeping up, and if that is true it is bad news. But there are a few things which mean that I can't be sure of that; firstly, this is a different laboratory, maybe using a different test kit- there are several, and each give slightly different results, enough to produce results like mine. Secondly, anything which causes inflammation can cause CEA to rise, and it is certainly true that I have had an inflamed bum for a while.
This level of CEA is still not enough to be sure about, basically, so all I can do is either to wait three months and test again or wait a month and test again. I'm in two minds about what to do, and I guess I'll make my mind up on the spur of the moment. In three months I have to do a liver ultrasound too, although I could move it up. I don't know, I'm just confused what to think. I know if I talk to my oncologist he won't be concerned about this result. I just have to try to forget about it and get on with life, I guess. This is so typical of this disease, there is so much uncertainty all the time. Maybe that is the hardest thing.

Ten Weeks (and a bit...)

This is the first time I can use the word 'good' to describe how I feel since the reversal operation. The last few weeks have been better and better, partly because I have started to use more Imodium. With the long trip to Chasamba, I took plenty of Imodium and had a good experience. I really didn't have any problems at all, even though it was 36 hours of travel, three planes and lots of airport time. As a result I have carried on taking it since then, playing around a bit with timing and amount to see what works. So, I've got to the point where 2 tablets first thing in the morning and another one some time in the afternoon seem to have the desired effect, which means that I feel safe to go out, usually have only two or three lavatory visits per day and no out of control rushes at all. I am still taking Metamucil, although I keep forgetting and I'm not really convinced that it makes that much difference. One thing which has helped a lot is that I have started having porridge for breakfast; my stomach really seems to like it and the silence afterwards is remarkable, no bubbling, volcanic eruptions or even squeaks! And, I had SALAD today! Only three spoons, just in case, but everything is ok so far. I was amazed at the crunch of fresh vegetables, I had completely forgotten how salad feels. Papaya is another food which is fine, I had half a medium sized one yesterday, and bananas of course too are ok, so I'm getting enough vitamins. I won't take vitamin supplements since there is some data which suggests that antioxidants help cancer cells survive. I'm still drinking lots of green tea too.
I can share with you now the fact that until a short time ago I really thought I had made a mistake having the reversal. I had perfect control with the ileostomy, and then suddenly, I'm shitting all over the place, stuck on the loo all the time, having a sore sore bum and afraid that that's how my life is going to be from now on... It doesn't help that doctors are vague about what to expect, and reading other people's experiences can be very scary too. Some people still have no quality of life years after reversal. I didn't want to post my fears because I did hope that I was wrong and that things would get better, and thank goodness, they have.

Seven Weeks On...

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.

The three week mark...

Three weeks post reversal, and things are still up and down. I had a few really good days with very few bowel movements and actual TURDS, something I haven't experienced for more than a year. But  unfortunately it didn't last; I don't know what I ate or whether it had nothing to do with food, but I went back to what I can only describe as sludge. Sludge tends to be hard to control and also enjoys announcing itself just at unfortunate moments....
Then I think I made a mistake- Metamucil is supposed to help reduce diarrhea and form stools, so if you have sludge it makes sense to up the dosage, sound reasonable? NO. This is a bad idea. Remember this post, anyone who is on the same course as me, you will save a lot of toilet time. When you increase the amount of soluble fiber you are taking, you may find (as I did) that you suddenly get a lot of gas. And I mean A LOT of gas. Enough gas to fill a zeppelin. I'm just assuming, I didn't actually fill a zeppelin or anything, but believe me, I was scared to light a match indoors. And this is combined with aforementioned sludge. I think you get the idea. 'Wet fart' doesn't even scratch the surface, and this is happening six to ten times AN HOUR!!!!
I think on one hand the gas is a good sign; it means my intestinal flora have well and truly recovered from the beating they have had over the last year. It may not be a coincidence that I had some probiotic yogurt this morning too, maybe my bacteria are having a celebration. On the other hand, it's awful, and I'm back to the  sore bum stage again. I have found out that water is the best antidote to the burning- washing really well after each mini-hiroshima helps a lot. Now my stomach seems to be calming down, and I think I'll try a day or so without Metamucil to see what happens.
On the positive side, I feel generally quite a lot better, no more fevers and the scar looks pretty good. So, it's like two steps forward one step back. That's ok, it could be one step forward two back, I'm not complaining.