Tomorrow at this time we will be in Jordan, hopefully at the airport and waiting for our flight. It's a long journey; we leave Pardes Hanna at 7.00 am when Boaz, one of Oren's brothers, is kindly driving us to Meggido junction. Thanks Boaz! Then we get on a special bus which takes us all the way to Amman; we bought an inclusive ticket from Fly East, the cheapest way to fly to the east from Israel, and it is quite convenient too. If we had flown from Ben Gurion airport in Israel it would cost much much more, I don't understand why. So then we wait a few hours for our flight, which goes to Abu Dhabi. In Abu Dhabi we wait six hours in the airport, we aren't allowed into Abu Dhabi because we are Israelis, but I don't think I would want to go out anyway, it's the middle of the night. Then we get on the next flight, which goes to Manila. We get to Manila on the afternoon of the day after we set out, and wait three hours there for the final connecting flight from Manila to Puerto Princesa. In Puerto we have a hotel reservation for the night, and the next day, which is Thursday, we will finally get to see Chasamba. It's a marathon.
We have heard from friends and from the owner of the yacht club that Chasamba is fine, still floating and quite dry. Whatever we find, as long as she is floating things will be ok. We know how to renovate and clean, and it will be a labour of love, helped along by good cold Philippine beer (at least for Oren) and plenty of mud crabs, pork baby ribs and shrimps, sweet orange mangoes and coconut curry.... You can tell I'm getting excited already!
Here is the link to Chasamba.com, where I will post all our sailing related news, just click on the Chasamba.
Monday, 18 November 2013
Wednesday, 6 November 2013
I'm not leaking!
Sorry for the delay in updating! I got carried away planning our next moves and forgot I had left you all hanging on the edge of your seats waiting for the next installment of this thriller...
Well, the leak test was truly awful, just as I thought it would be. We got to the hospital at about 10.00, reported to the x-ray department and were told to take a seat. After an hour it became evident that they had FORGOTTEN about me! Then, when they realized I existed, they had to start trying to get hold of Professor Shpitz, who was in the operating theatre. To make a long (long long) story short, eventually he turned up and ushered me in to the x-ray room. Of course, because this is Professor Shpitz, and everyone was falling over themselves to be useful, we ended up with two x-ray technicians, another doctor and a nurse as well as Professor Shpitz all clustered around my bare bum while I lay with my back to them on my side. The test consists of an enema with radio-opaque fluid which is introduced while x-rays are taken of the area where the join was made. This fluid is sticky and icky, and in my case the second it hit my inner bits they decided that, no, this was going OUT, and it then stuck to my legs and the hospital gown so that I got all stuck together. At least it didn't hurt much, it was just uncomfortable and very embarrassing, just as I had feared it would be. I could only hope that everyone's eyes were more on the x-ray screen than on my private version of a tsunami. As soon as I was allowed to I jumped off the table and ran (or waddled, since my gown was stuck firmly together, restricting my movements to little baby steps....) for the toilet, which mercifully was next to the x-ray room. There I stayed until I was sure everything that wanted out had come out. Then I had to rip the gown off my legs forcibly and try to get dressed without my legs sticking together meanwhile.
But, somehow, I survived and as I was still frantically trying to pull on jeans over my sticky legs I was informed that the news was good, the join is fine and I can have a reversal! So it was all worth it. I just hope I never need that test again.
Now, the date for the reversal was more or less in our hands, except that the waiting list meant that we had to wait at least a month or so. We went home and thought about it and decided to wait for three months and meanwhile to go back to Chasamba for a good holiday and to get her back into shape after a year and three months of sitting on her own being used as a target for bird poo, a convenient anchoring place for barnacles and a home for rust. So, we leave for the Philippines on the 19th of this month!!!! And have an operation date ready, the 3rd of February. We get back to Israel on the 14th of January, just in time to get all the pre-op blood tests done, and conveniently to do the three month check up of markers and CT too.
I will keep updating here, but will also post on www.chasamba.com, which is our sailing blog, until we come back.
Well, the leak test was truly awful, just as I thought it would be. We got to the hospital at about 10.00, reported to the x-ray department and were told to take a seat. After an hour it became evident that they had FORGOTTEN about me! Then, when they realized I existed, they had to start trying to get hold of Professor Shpitz, who was in the operating theatre. To make a long (long long) story short, eventually he turned up and ushered me in to the x-ray room. Of course, because this is Professor Shpitz, and everyone was falling over themselves to be useful, we ended up with two x-ray technicians, another doctor and a nurse as well as Professor Shpitz all clustered around my bare bum while I lay with my back to them on my side. The test consists of an enema with radio-opaque fluid which is introduced while x-rays are taken of the area where the join was made. This fluid is sticky and icky, and in my case the second it hit my inner bits they decided that, no, this was going OUT, and it then stuck to my legs and the hospital gown so that I got all stuck together. At least it didn't hurt much, it was just uncomfortable and very embarrassing, just as I had feared it would be. I could only hope that everyone's eyes were more on the x-ray screen than on my private version of a tsunami. As soon as I was allowed to I jumped off the table and ran (or waddled, since my gown was stuck firmly together, restricting my movements to little baby steps....) for the toilet, which mercifully was next to the x-ray room. There I stayed until I was sure everything that wanted out had come out. Then I had to rip the gown off my legs forcibly and try to get dressed without my legs sticking together meanwhile.
But, somehow, I survived and as I was still frantically trying to pull on jeans over my sticky legs I was informed that the news was good, the join is fine and I can have a reversal! So it was all worth it. I just hope I never need that test again.
Now, the date for the reversal was more or less in our hands, except that the waiting list meant that we had to wait at least a month or so. We went home and thought about it and decided to wait for three months and meanwhile to go back to Chasamba for a good holiday and to get her back into shape after a year and three months of sitting on her own being used as a target for bird poo, a convenient anchoring place for barnacles and a home for rust. So, we leave for the Philippines on the 19th of this month!!!! And have an operation date ready, the 3rd of February. We get back to Israel on the 14th of January, just in time to get all the pre-op blood tests done, and conveniently to do the three month check up of markers and CT too.
I will keep updating here, but will also post on www.chasamba.com, which is our sailing blog, until we come back.
Monday, 28 October 2013
Professor Shpitz and the way forward...
So... Wednesday was Shpitzday. Naively I thought I was just going to swan in there and get a date for closure of my ileostomy. Well, no. That's not how it works. First of all I was informed that I needed a colonoscopy and a 'leak test', which, believe me, is going to be just as horrific a test as it sounds. I was anxious that these tests would take a while to set up; through my local clinic it would have taken at least a month. Fortunately, Prof. Shpitz came to the rescue, and set up both tests in the hospital, the colonoscopy today and the 'leak test' tomorrow, and I have just come home from the colonoscopy.
I was really quite worried about having anything stuck up what has become rather a sensitive and delicate bit of me, and explained this (loudly) to any medical staff I could manage to trap in a corner for long enough. Luckily the colonoscopist (?) was a nice person and reassured me by deciding he would use a pediatric colonoscope and really just by making me feel that he was listening to my concerns. In the event it was a much easier colonoscopy than the first, last year, and I felt absolutely fine right afterwards. The results were good too, all clear and a recommendation to proceed with closure.
Tomorrow's test is another adventure in the making, it sounds slightly awful and I hope it won't really be as bad as I fear. It involves a rubber tube, contrast medium, an x-ray machine and twenty minutes of clenched muscles. I shall say no more until tomorrow, assuming I survive.
The last bit of news is that even when all these tests are done there is a waiting list for the operation. I don't think it is actually a waiting list of people wanting their ileostomies reversed, just a general waiting list for non life saving operations, and I am not sure it really bothers me. If it turns out to be a few months we will go out to Chasamba, have a lovely holiday which we both really need, and come back for the operation. It might even be better that way, since apparently it takes a while to get good bowel control back after reversal, so a good holiday beforehand might be a good idea!
I was really quite worried about having anything stuck up what has become rather a sensitive and delicate bit of me, and explained this (loudly) to any medical staff I could manage to trap in a corner for long enough. Luckily the colonoscopist (?) was a nice person and reassured me by deciding he would use a pediatric colonoscope and really just by making me feel that he was listening to my concerns. In the event it was a much easier colonoscopy than the first, last year, and I felt absolutely fine right afterwards. The results were good too, all clear and a recommendation to proceed with closure.
Tomorrow's test is another adventure in the making, it sounds slightly awful and I hope it won't really be as bad as I fear. It involves a rubber tube, contrast medium, an x-ray machine and twenty minutes of clenched muscles. I shall say no more until tomorrow, assuming I survive.
The last bit of news is that even when all these tests are done there is a waiting list for the operation. I don't think it is actually a waiting list of people wanting their ileostomies reversed, just a general waiting list for non life saving operations, and I am not sure it really bothers me. If it turns out to be a few months we will go out to Chasamba, have a lovely holiday which we both really need, and come back for the operation. It might even be better that way, since apparently it takes a while to get good bowel control back after reversal, so a good holiday beforehand might be a good idea!
Tuesday, 22 October 2013
I was wrong!
I have just come home from my appointment with Dr. Mishaeli, my oncologist. I am pleasantly surprised by what he said, and it has changed my mind about check ups.
Apparently, the quite new practice of operating on liver tumours has changed the outlook for recurrent cancer survivors. If liver metastases are caught early many CAN now be removed; the five year survival figures haven't yet had time to reflect this. This means it is worth doing check ups, at least cancer markers and abdominal CT, these being the best way to discover liver metastases. I scurried home and started checking whether I can do these tests in Thailand, Taiwan and so on; yes you can! So it seems that that is what we will do. The other good piece of news is that I can do the colonoscopy before we leave, it is long enough after the operation. If that is ok I don't need another one for five years, yay! And I got Dr. Mishaeli's email, so I can always ask him if I'm not sure about anything.
All in all it was well worth going to talk to him. Tomorrow Prof. Shpitz!
Apparently, the quite new practice of operating on liver tumours has changed the outlook for recurrent cancer survivors. If liver metastases are caught early many CAN now be removed; the five year survival figures haven't yet had time to reflect this. This means it is worth doing check ups, at least cancer markers and abdominal CT, these being the best way to discover liver metastases. I scurried home and started checking whether I can do these tests in Thailand, Taiwan and so on; yes you can! So it seems that that is what we will do. The other good piece of news is that I can do the colonoscopy before we leave, it is long enough after the operation. If that is ok I don't need another one for five years, yay! And I got Dr. Mishaeli's email, so I can always ask him if I'm not sure about anything.
All in all it was well worth going to talk to him. Tomorrow Prof. Shpitz!
Monday, 21 October 2013
To check or not to check?
So....my oncologist has thrown me out. He looked at the CT and told his secretary to tell me to come for a check up in a few months, or in his words, "Whenever you're in the country again." In other words, piss off. I'm a little harder than that to get rid of, I've made an appointment with him tomorrow ( actually it should have been Wednesday, neatly fixed just before the appointment with Prof. Shpitz, but he is going fishing on Wednesday apparently, so I got rescheduled to Tuesday, annoying but not enough to get me off his trail!). I have a few questions to ask him, but the most important one is whether I really should bother with three month check ups at all.
The thing is; ok, I know my chances are about 50/50 of the cancer coming back. If it does, will early detection really change anything, or will it just mean starting a most probably futile course of chemo which will waste the rest of the time I have? Basically, which sounds better, snorkelling round the Thai islands for as long as possible, or sitting in a chemo armchair for, granted, maybe twice as long? I know which I would choose, and unless Dr. Mishaeli gives me a very good reason to change my mind, I will. I just need to be sure the statistics I have managed to find are right; it is hard to find statistics of this kind but what I have found seems to say, 'Only 30% of recurrent rectal cancer can be treated surgically. Of those cases only 30% are successfully treated. Overall, only 1% of cases are treated more successfully because of early detection of recurrence.If you have a recurrence you have about the same chance of surviving it as you do of being crowned Ms. World. Run, run fast and don't look back.'
On Wednesday I will find out when I get the reversal of the ileostomy, hopefully. If there is a long wait for it we plan to fly out to Chasamba and come back, but I hope it will be soon. I did blood tests this morning, hoping to be able to show Prof. Shpitz that my counts are back to normal, but I've just looked at the results and they aren't wonderful. My liver is nearly back to normal, that's the good side, but I am still anemic and my white blood cells are still low. I can't understand it; I feel so much better, I walked to the clinic and felt good, no huffing and puffing at all. I have got the colour back in my face too. Weird. So I guess grabbing any spare reversal-operation slot available this week is out?
The thing is; ok, I know my chances are about 50/50 of the cancer coming back. If it does, will early detection really change anything, or will it just mean starting a most probably futile course of chemo which will waste the rest of the time I have? Basically, which sounds better, snorkelling round the Thai islands for as long as possible, or sitting in a chemo armchair for, granted, maybe twice as long? I know which I would choose, and unless Dr. Mishaeli gives me a very good reason to change my mind, I will. I just need to be sure the statistics I have managed to find are right; it is hard to find statistics of this kind but what I have found seems to say, 'Only 30% of recurrent rectal cancer can be treated surgically. Of those cases only 30% are successfully treated. Overall, only 1% of cases are treated more successfully because of early detection of recurrence.If you have a recurrence you have about the same chance of surviving it as you do of being crowned Ms. World. Run, run fast and don't look back.'
On Wednesday I will find out when I get the reversal of the ileostomy, hopefully. If there is a long wait for it we plan to fly out to Chasamba and come back, but I hope it will be soon. I did blood tests this morning, hoping to be able to show Prof. Shpitz that my counts are back to normal, but I've just looked at the results and they aren't wonderful. My liver is nearly back to normal, that's the good side, but I am still anemic and my white blood cells are still low. I can't understand it; I feel so much better, I walked to the clinic and felt good, no huffing and puffing at all. I have got the colour back in my face too. Weird. So I guess grabbing any spare reversal-operation slot available this week is out?
Friday, 11 October 2013
CT Scan done, on we plod...
On Sunday I had my CT scan. This time I did it in Netanya, at the Laniado Hospital, which is much nicer than the overcrowded clinic in Bnei Brac where I did the first two. I sat there for the compulsory two hours of drinking yukky contrast medium, even though none of this stuff had any way to get into my nether regions where the scan was most important. Then came the time to lie on the table and get injected with radioactive iodine, which was even more fun. At least it made my whole body hot- it was a little cool in the waiting room, ha ha. Then wait for the disc and ask how long we have to wait for interpretation, and I got a shock; three weeks! We asked to be given priority, although we didn't really have much of an excuse, and the receptionist said she would try, no promises. So, imagine my surprise when the next morning I got an email from the clinic saying my results were ready! They really came through for us, well done Mor Clinic!
Now, the results look good; no visible metastasis anywhere, no enlarged lymph nodes, the only thing is a thickening of the tissue around the operation site which is almost certainly scar tissue. I've faxed the results to my oncologist and now we are waiting to hear if these results are good enough to get a green light to go on to the ileostomy closure. We are hoping they will be, we are so longing to get out of here back to Chasamba, our floating home, waiting faithfully for us in Puerto Princesa in the Philippines. These are the last few hurdles we have to jump.
Generally I am feeling gradually better, although the improvement isn't as fast as I had hoped, probably because my liver has taken quite a shot and may take a while to recover. I have started walking, although today was too hot- we're into the ups and downs of temperature that typify autumn here, and today was almost as hot as the middle of summer. Yoga is good, I can do all the lesson now, even when it is a hard one, and I have started slowly to clean and reorganise our little house; it had got into quite a mess since I didn't even try to clean towards the end of chemo. Luckily neither of us really care. I am juicing most days, and really like the combination of beetroot, apple, carrot and celery- it is really tasty! Also still taking wheatgrass, and eating dark chocolate, drinking astragalus tea... I'm trying everything, more or less, and eating plenty of salad and fruit. Really just so if the cancer does come back I can say, "Well, I tried everything!" The problem with that being that there will always be some quack remedy that I didn't try, but at least I'm having a fair crack at it.
The best thing about finishing chemo is that I can eat ICECREAM! I have had a whole summer with no air-conditioning allowed and no icecream, I think that is the cruelest part of all. Now I can eat it, and I'm enjoying it, just finished a big bowl of chocolate chip and vanilla, yum!
Now, the results look good; no visible metastasis anywhere, no enlarged lymph nodes, the only thing is a thickening of the tissue around the operation site which is almost certainly scar tissue. I've faxed the results to my oncologist and now we are waiting to hear if these results are good enough to get a green light to go on to the ileostomy closure. We are hoping they will be, we are so longing to get out of here back to Chasamba, our floating home, waiting faithfully for us in Puerto Princesa in the Philippines. These are the last few hurdles we have to jump.
Generally I am feeling gradually better, although the improvement isn't as fast as I had hoped, probably because my liver has taken quite a shot and may take a while to recover. I have started walking, although today was too hot- we're into the ups and downs of temperature that typify autumn here, and today was almost as hot as the middle of summer. Yoga is good, I can do all the lesson now, even when it is a hard one, and I have started slowly to clean and reorganise our little house; it had got into quite a mess since I didn't even try to clean towards the end of chemo. Luckily neither of us really care. I am juicing most days, and really like the combination of beetroot, apple, carrot and celery- it is really tasty! Also still taking wheatgrass, and eating dark chocolate, drinking astragalus tea... I'm trying everything, more or less, and eating plenty of salad and fruit. Really just so if the cancer does come back I can say, "Well, I tried everything!" The problem with that being that there will always be some quack remedy that I didn't try, but at least I'm having a fair crack at it.
The best thing about finishing chemo is that I can eat ICECREAM! I have had a whole summer with no air-conditioning allowed and no icecream, I think that is the cruelest part of all. Now I can eat it, and I'm enjoying it, just finished a big bowl of chocolate chip and vanilla, yum!
Friday, 27 September 2013
All Done!
I finished the last tablet of Xeloda on Wednesday. It is a funny feeling; a mixture of relief that this long six months of chemo is finally over and worry that now I'm flying solo, nothing poisoning any left over cancer cells. There is the knowledge in the back of my mind that my chance of surviving five years is only around 50%, and the worry that the next CT, the next blood tests, the next colonoscopy will tell me that my time is up. Maybe this seems so much more pertinent now because I am into the next stage of this saga, the waiting game. It may be that for me at least, this is the hardest part of all; until now I was being treated, doing something about it- now there is nothing I can do to influence the future. Well, I've given it my best shot, had the full treatment, taken every pill on time ( well, maybe forgot once or twice, but not much). I can at least say that I've done the most I can.
The weather has changed here, it's much cooler and although that is nice I have gotten my traditional first autumn cold. Just a sniffle, and I'm sure it's nothing to do with the chemo, I really do get this sniffle every year, at least when we are in Israel, but it makes me feel down. It's hard to sleep with a blocked nose!
Taking stock, what long term effects has chemo left me with? It seems not many; I still have a slight loss of feeling in my fingertips but I think it is getting better and may well disappear completely. I still have pins and needles and my hands lose feeling when I take something out of the fridge. My blood counts are still down, but should bounce back soon. My appetite is still variable, but that can only be a good thing, the occasional day of not eating much isn't going to hurt me; my weight is stable at a comfortable 57.5 to 58 kilos depending on how dehydrated/ well hydrated I am. My skin has held up well, I haven't had any of the peeling and soreness which often happens with Xeloda, but it is very dry and I must pamper it a bit with lotion. Fatigue is still a nuisance, but after all it's early days yet. I want so much to start walking and get strong again but I just have to wait, another week, another two weeks...
The weather has changed here, it's much cooler and although that is nice I have gotten my traditional first autumn cold. Just a sniffle, and I'm sure it's nothing to do with the chemo, I really do get this sniffle every year, at least when we are in Israel, but it makes me feel down. It's hard to sleep with a blocked nose!
Taking stock, what long term effects has chemo left me with? It seems not many; I still have a slight loss of feeling in my fingertips but I think it is getting better and may well disappear completely. I still have pins and needles and my hands lose feeling when I take something out of the fridge. My blood counts are still down, but should bounce back soon. My appetite is still variable, but that can only be a good thing, the occasional day of not eating much isn't going to hurt me; my weight is stable at a comfortable 57.5 to 58 kilos depending on how dehydrated/ well hydrated I am. My skin has held up well, I haven't had any of the peeling and soreness which often happens with Xeloda, but it is very dry and I must pamper it a bit with lotion. Fatigue is still a nuisance, but after all it's early days yet. I want so much to start walking and get strong again but I just have to wait, another week, another two weeks...
Subscribe to:
Posts (Atom)