Wednesday 18 December 2013

Guess what; you CAN swim all day with a stoma!

We've been back in the Philippines for four out of our seven and a half precious weeks, and have spent most of it getting Chasamba sea worthy and rust free (more or less....). We decided on Sunday it was finally time for a real holiday, and got on a bus to El Nido, the wonderful little holiday village which sits nearly at the northern tip of Palawan. Here limestone carsts form stunningly beautiful islands wreathed with cloud and the water is clear with good visibility. The main activity to do in El Nido is to take a banca trip out to the islands and snorkel, have lunch - grilled fish, rice, salad and papaya, comes with the banca and crew, snorkel some more and go home slightly sunburned but happy. As you can imagine, I was more than a little worried about swimming all day with a stoma; visions of awfully embarrassing potential accidents kept crowding out the expectations of fun. I wasnt about to give in though, and miss the best bit of the holiday, so I prepared an emergency pack of bases, bags and everything I might need, and threw it into the bottom of the bag with towels, snorkelling gear and suntan lotion.
The trick, I discovered, is NOT TO CHECK ANYTHING! Unless the whole base actually falls off, in which case you obviously do have to do something, there is really no problem. After all morning swimming the only problem was finding some discreet place to empty the bag after lunch, (there are no toilets out there!) and in the end I did this in the sea a long way from anyone else on the beach, round a little headland, underwater. It was fine, easier than using some toilets, actually! And the fish had fun too. After all day in the water when I got back to our cottage and checked, the base had partly separated, maybe an inch or two, but there was no actual leakage at all, and I'm fairly sure no-one on the trip had any idea I have a stoma. My bathing suit has a skirt and the cut is generous enough to hide it, so, yes, I would do it again!
Tomorrow it's back to the grind, we have lots more work to do before we leave on the 14th. Merry Christmas, everyone!

Thursday 12 December 2013

Puerto Princesa, yacht therapy.

We've been here for three weeks, ( for those of you who don't follow my other blog, chasamba.com, here is Puerto Princesa, Palawan, where our yacht, Chasamba, has been sitting on a mooring waiting for us for the last fifteen months) and really all we have done is work. I know most people think that living on a yacht is like one long holiday, having cocktails on the deck and watching the sun go down after another glorious day of sunbathing and swimming.... Well, our boat isn't quite like that. After fifteen months of not being lived in and cared for, Chasamba has some issues. Rust, mostly, and Oren is hard at work chipping and sanding, treating with rust inhibitor and primer. Me? I did help for a while, but I'm fed up with it, and have decided to nurse a cold and just clear up after him; a big enough job anyway. The engine doesn't work yet, although we have hope that it will, eventually. The best thing is that I have finally got round to throwing out loads of old junk and making things a bit more comfortable. The last things to go so far have been two old duvets, one a double! which we have dragged with us for the last five years without using once. They take up so much space too!
It may all sound a bit daunting after the year we have had, but really this is the best therapy there is. Getting back to real life, doing things that really need doing, saving our boat. It's good, even if it is hard work. Anyway, next week we will take a bus up to El Nido, on the northern tip of Palawan, and have a real holiday, swimming, sunbathing and having cocktails! This is assuming the weather forecast shows no typhoons coming, of course. We have another month here, it looks as though it is all going to fly by us.

Monday 18 November 2013

Leaving soon, so excited....

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.

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.

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!

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!

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?

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!

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...

Tuesday 27 August 2013

Just one more to go and I'm out of here!

I had the seventh out of eight treatments of Oxaliplatin last week, and this time wasn't too bad at all, although I had the misfortune to be assigned the nurse from hell; short tempered, careless and unfriendly....until she found out from her colleagues that I worked as a nurse for 14 years there. Then she tried to back pedal furiously. Burn in hell, Svetlana! Nurses working in Oncology HAVE to have at least a little compassion and bedside manner ( or armchair manner, I guess); this nurse I wouldn't have let treat a dog, and if I get a chance to talk to the Sister, whom I know well, I will definitely bring that subject up. To be fair, until now I have been spoiled rotten by Maia, an American nurse who is really great; she was on holiday this time.
 The Oncology dept. has been moved temporarily while they renovate, and it is stuck in an old Internal  Medicine ward; the air-conditioners there have only two speeds, freezing and off, so I spent the whole treatment under two blankets with a hot water bottle! (Cold is the enemy of Oxaliplatin.) I hope they are back home by my next and last treatment on September 11th.
I really don't feel too bad, and I'm attributing at least part of that to the wheatgrass juice I have been drinking. I am the last person to believe in quack remedies, but after looking at the amount of vitamins and nutrients in a shot of wheatgrass I decided it couldn't do any harm to try it, and I do feel a measurable improvement in how I feel. Blood tests are inconclusive, because I don't know what they would be like if I wasn't taking it; I had a big drop in all counts before I started taking it, and so far I have had one blood count taken which shows a small drop in most parameters but not anything like the previous test, and thrombocytes up. So who knows? Maybe it's doing some good. I do feel pretty weak, probably because my hemoglobin is low, so I just chill out as much as possible, which is a lot. My chess is getting much better- anemia seems to improve it, maybe because I feel much more capable of calmly thinking about the next move without hotbloodedness making me jump too soon. And I'm reading the Maddaddam trilogy, two of which I read ages ago, and the third has just come out so I'm starting from the beginning to refresh my memory, finished the first already. And following all the boats trying for the Northwest Passage this year, interesting because it is a bad ice year and I'm betting several get stuck over winter in the Arctic. One boat is a fibreglass catamaran with two small children on board!
I have lined up a CT scan for 6th October, the earliest I could do it without annoying my Oncologist, who wanted to wait a month after the last treatment. Then I have to wait for the results, which generally take two weeks, and back to Professor Shpitz to get the ileostomy closed.
So, 15 days today to the end of treatment! Or actually a month, because I keep taking the Xeloda for another two weeks after that, but it bothers me less. I can't wait to start building my strength up again, the Annapurna circuit beckons!

Saturday 3 August 2013

I'm still standing...

Sorry to all my faithful readers for being so lazy, I know it's been a long time since I updated. So, I'm now past the sixth chemo dose, and it is definitely getting harder. My blood counts are down quite substantially, and I only just scraped past the check-up before the infusion; my platelets are 98 whatevers when the lowest they should be for chemo is 100 whatevers. Still, I can tentatively say that I feel less bad this cycle than last, the last one really did me in for a few days and while I did feel really bad on the day, this time I seem not to be crashing into a really yucky state like last time.Maybe I was dehydrated, or maybe the chemo was a really strong batch, no way of knowing but I truly felt awful for a while.
 I have learned that it isn't a good idea to try and force my body to do anything it doesn't really want to do; I'm just worried it will get spoiled and want an easy life after chemo too. On the other hand I am quite determined to do the Annapurna Circuit next October, so I guess I will have to lick it into shape by then, whatever it thinks about it!
The timetable for the next few months looks like this; September 11th last chemo dose, early October CT which my oncologist is quite optimistic about, in fact he said that he is confident that there will be no pathology visible, to which I answered,  so why do I need a scan? Of course I had to ask, and the answer is that this is the baseline scan, so that if there is recurrence later they know it is new. Then back to Professor Shpitz to set a date for the ileostomy reversal, hopefully some time in November, and some time in December ESCAPE, back to paradise!!!!
Chasamba is waiting for us, the season will be perfect to sail to the Gulf of Thailand, it is all I am thinking about and it keeps me going. Just two more doses of poison, one scan and one little operation and we're out of here!

Thursday 11 July 2013

Here we go again....

Number five. Not too bad, just pins and needles, yukky feeling when I drink anything cool, no appetite ( actually a plus as I did gain a bit during the famous 'good weeks') general tiredness. I've learned how to mess about, do nothing and not feel guilty, since if I do try to do too much on these days I just get nasty and weepy, and no-one, least of all me, needs that. So doing nothing is a good thing. I can sweetly greet Oren when he comes home from working twelve hours and say " Oh, I'm so glad you're home, I'm dying for a cup of tea." This is a big improvement from, " Where have you been, I'm exhausted, I did the laundry, made dinner, went shopping, why do I have to do everything, wa wa wa..." ! And Oren being so sweet, he really doesn't mind making me a cup of tea, cooking something nice for dinner, clearing up at least a bit of the mess I've made during the day. I really am very lucky, and I do appreciate that.
I did go to yoga, and even stopped on the way back to get stuff for Oren's muesli, which he mixes himself.He uses an incredible amount of oatmeal, we are getting to the point that we could get deliveries straight from the oatmeal lorry! I should eat it too, it is good for my stoma output, but I'm not really keen on it. In fact I find I am drawn exactly to the foods which are the least recommended, salads, oily food, sushi, burekas, anything which I know I will spend the next few hours emptying tons of liquid output after. I don't really care though, I am not going to survive on potato, rice and oatmeal for the next few months. I just drink more, probably four to five litres a day, and keep my salt intake high. Potato crisps are one recommended food that I do eat!


Wednesday 26 June 2013

Halfway, and I've found my best friend again!

Four rounds of Oxaliplatin down, four to go. I feel fine now, the two good weeks are ahead of me and I'm on the home run. No worsening of side effects, even I can say that this round was easier for some reason, maybe because I finally started using the Lorivan which was prescribed for me to use on the days after the IV. The protocol has changed, I don't get calcium and magnesium any more because new studies have shown that it doesn't make any difference to the side effects. My personal experiences agree with this, it didn't make any difference and saved me half an hour or more at the hospital.
The best thing that has happened to me for a long time happened this week. I found my best friend again. I don't know how we lost contact but I am so glad she is back; I went up to meet her in the nice, quiet community where she now lives and we spent the whole day just talking. I was hoarse when I came home! So much has happened in both our lives since we lost contact eight years ago, we have both changed but somehow we seem to have changed in the same way. We still just understand each other, and it is wonderful. I feel happy in a way I haven't for a long time. Just to balance things out the microwave packed up this morning- good trade off, universe, I'm willing to renew all my electrical appliances this way!

Saturday 8 June 2013

Out with the goats, in with a Green Monkey!

There is a traditional Israeli story about a man who goes to his rabbi and says " Rabbi, please, you have to help me, my wife and I and our five children and my parents and her parents, we all live in a tiny one room house, I think I'm going crazy. What can I do to improve this situation?" The rabbi smiles and says, " That's easy. Buy a goat and take it home, let it live in your house with you for a month and come back to see me." The man really thinks this rabbi has gone mad, but being a religious man he has no choice but to do what the rabbi said, so he gets a goat on the way home. We'll gloss over the terrible argument he has with his wife, the delighted reactions of the kids and the surprised expression of the goat, and fast forward a month. He drags himself into the rabbi's office ( or whatever rabbi's have, maybe it isn't an office) and falls on the floor crying. " I can't stand another minute of this," he screams. The rabbi smiles and says, " Now take the goat to market and sell it." The man whoops for joy and rushes off to get the goat. When he gets home from the market he goes into his house and is amazed at how much space there now is...
Suffice to say that Pziza, Iza and her kids are now frolicking happily in the meadow belonging to the boarding school that Oren's brother works at, and I feel that there is so much space in my life...
And I have met a Green Monkey! Green Monkey, aka Shannon E. Kennedy, is a wonderfully creative and sometimes painfully honest blogger who has been through having breast cancer and now has rectal cancer. 'Follow me, I have no idea where I'm going', is her motto, I love it! Here is a link to her blog, and it's on the blog roll too. Green Monkey Tales
I started this blog for two reasons. One was to keep friends and family updated, so I didn't have to worry about forgetting someone or whatever. The other reason was that when I was first diagnosed I looked for advice, support or just people with similar experiences to know what it was really going to be like, and it turns out that there are very few of us 'wrecked tail cancer' ( love that!) bloggers out there. Now I am part of the way through the treatment, I have had the pre-adjuvant therapy, the operation and some of the adjuvant chemo and I do have things that I have learned, I can say to people just starting this, " Keep your head up, it's not as bad as it sounds, you can do this!"
 I don't know how many people like me read this blog, I know there must be a certain percentage of readers who are going through this too but Green Monkey is the first to make contact with me, and it makes me feel that it is so worthwhile blogging. Honestly, sometimes I was wondering whether I was talking to myself! ( Which isn't too bad anyway, sometimes just writing is good therapy anyway). So, I'm really happy this week. Also because I'm into the time when I feel good again after the IV, and I have another eleven precious days of good feeling time. And I have adopted a dog, she is lovely and we went to the beach with her today and had fun, but I'll write about that next time.

Tuesday 4 June 2013

A Tospy Turvy Week.

I have felt so up and down, inside out all week. I don't know if it is the steroids or just the effects of chemo getting more pronounced, but I felt weird, moody and not myself. Today I am feeling a bit better, I hope this trend will continue. Oren is working very hard all week, which doesn't help; at least he got a pay rise though!
We have a problem with the goats; it is too hard for me to do all the work with them during the week when I feel bad- I just want to curl up in a ball, not to get up at 6 am to milk Iza and feed them, take them to pasture for hours and drag them around after me. Unfortunately the other people who were supposed to help are too busy too. The end result is that the goats are suffering, although being goats they don't really seem to care. We haven't milked Iza for the last few days, just let the kids have all the milk, lucky them. It is a bit hot to go out to pasture anyway, so as long as they get plenty of food and have an hour or two free in the meadow to stretch their legs every day I think they will be fine. Meanwhile Pziza has been taken to the boarding school where Boaz works to meet a nice billy goat and hopefully start a family, it is quite a bit easier without her since she was the source of most goat naughtiness around here. Maybe she will come back with an education too!
Other news; we are in the process of adopting a dog! Sofi is part canaani , the Bedouin dog, and three years old. She is a good dog, not too big but big enough to guard, and she seems to be fitting in well. She has been here for a day so far, and seems fine. She doesn't worry the goats at all, Iza makes a kind of half hearted 'danger' call when she comes up to her but there is no real tension or hysterical running off, which goats do for no reason anyway, it's a goat thing. The kids don't even run to Iza when they see her, they seem to realize that she isn't going to attack them. Still, I am a bit careful, I don't completely trust her yet. She doesn't seem to have a wonderful memory for people, she knows me but barked at Oren when he came home even though he had given her a bowl of chicken the day before! She had better get that straight! She isn't in good condition, but I expect a month or two in the Mosenzon household will do its magic.
We aren't really thinking ahead too far, we know there is a good chance that we will go back to Chasamba at the end of the year but we will cross that bridge when we get to it. If Sofi makes herself welcome Oren's parents might keep her. Anyway, for the next few months she will have a good home.

Thursday 30 May 2013

Third time, getting used to it...

Yes, it's those icky days again. This time seems a bit less nasty than last time, no leg cramps, less flashes of headache and chills and meanwhile I still have an appetite although I know from the last times that the nausea will probably start tomorrow. One of the worst side effects is because of the steroids I get; my mood swings between anger, depression and jitteryness, and I can only sleep on the night after treatment with half a Lorivan ( like Valium). Still, I am getting used to this cycle of treatment and it makes it less awful knowing that in a few days the worst will be behind me and I will start feeling good again. Also this time the nurse got a vein first try, this makes such a difference! I wonder whether the strength of the chemo is really always identical, the side effects are so different each time.
I have to say that yoga really helps me at this time in my life; I get to the lesson feeling tired, a bit depressed and unhealthy and leave feeling relaxed, happy and energized, although a little tired sometimes too, it is very intensive vinyasa yoga. I am so lucky to have found the perfect class and teacher for me- for anyone in Pardes Hanna who is reading this, it is Hilah's class at Hakika sport centre.
Meanwhile the goat kids are growing at a tremendous rate and skip and race round the little meadow behind the house while Iza, their mother looks on nervously; she would run round after them if I didn't tie her on a long rope. Having kids running round is one thing, but Iza is a bit too big for comfort! We started milking her seriously yesterday, we separate the kids at night so they can't suckle and milk her in the morning. We got more than two litres of creamy, rich milk and made wonderful yoghurt from it.
Everything else here is fine, the weather is getting hot and I hope soon to get to the beach. Now that will be an experience to write about, swimming with a stoma! I'll wait until the side effects of the IV wear off though, so probably not this week.

Sunday 26 May 2013

Granny?


This is why I haven't posted recently; Iza has had two beautiful kids, and they are keeping us on the run! They are growing up fast, and she is a great mother, plus we now have goat's milk yoghurt for breakfast every day!

Friday 10 May 2013

Happy Blechday...

Happy blechday to me, happy blechday to me...
I'm not saying anything else about side effects this time, suffice to say that I will be happy to hit Monday, by which time I hope I will be feeling better. It's just blech, that's all I have to say. Oh well, two down, six to go. This time they only stuck me twice, oh happiness.
Why is cancer such an awkward disease? People generally have no idea how to talk to someone with cancer, and often come out with statements that don't help, or in the worst cases even cause me to get pretty annoyed. Examples;
" You will definitely beat it, no doubt at all!" No, I have about 60% chance of 'beating it', but does it make you uncomfortable to think about that? Well, sorry.
" It's a question of will power, you can beat any illness if you want to enough!" Oh, so this is my fault for not wanting to get better enough, huh?
"Should you be eating that? It's pretty unhealthy, shouldn't you be eating more salad?" Well, let's see, I've lost five kilos since March, do you think salad is going to work for me? Really?
And I'm not even going to deign to talk about the ' faith and belief' crowd, most of whom have realized that getting too close to me is not going to be good for their own health.
Good, I feel a lot better now, don't know if it is the nausea pill or the satisfying rant.
It isn't all black, really, don't take me too seriously. On the positive side, I seem finally really to be getting the hang of getting a good seal on my ileostomy wafer, and it's itching much less, the skin is getting better and it has stuck for three days and counting, a record so far. The weather is pretty good too, and my hands are suffering less from cold sensitivity this round. Iza still hasn't given birth, but she is so heavy, she didn't want to get out of her nice soft straw bed this morning. I know how she feels, actually.

Monday 6 May 2013

Just goating around...

Since I don't have much cancer related news ( and no news is good news!) I thought I would show you a bit of what else is going on- the most important thing everyone is waiting for is the birth of Iza's kids. Iza is one of our two goats, here is a picture of both of them;


Iza just means 'goat', and her daughter is called Pziza, which means ' reckless', which is a pretty good description of her behavior. Here you can't see that Iza is pregnant, but here is one of her doing her prenatal exercises- note the satisfied look on her face as she manages a full stomach roll;





Really, she is HUGE, she has to give birth soon or she will burst. Pziza was supposed to be pregnant too, but she doesn't look any bigger than she was. Sold a dud goat, I guess. And here is one of yours truly on a goatherding expedition;




Actually this was taken before we got the goats, but I like it, and this is my blog so I'm posting it, so there.


Thursday 2 May 2013

At my nadir..

Bet you don't know what a nadir is, huh? Nor did I, until now. The nadir in chemotherapy is when the lowest level of blood counts occurs in the cycle, and it depends on which drugs are used and on the concentration. On my treatment, today is the nadir for red blood cells, meaning I am temporarily anemic, and god do I feel anemic! I hardly managed to drag myself to yoga this morning, then sweated and puffed through the lesson; I didn't know what was wrong until I came home and did some research, which is why I now know the word nadir. The good news is that in another day or two my body will be swinging upwards again- I am into the week without pills, which is nice.
Otherwise all is fine, the hand tingling has completely gone and I don't have any nausea or anything .I have lost a kilo and a half, so I can eat whatever I want whenever I want, a novel experience for me. Looking at the list of common side effects of chemo made me realize that I actually have an advantage; quite a lot of the symptoms sound just like menopause, of which delightful experience I have already been partaking for at least the last two years. Insomnia, flushing, irritation, loss of libido, headaches and so on hold no special terror for me, in fact it can only get better since radiotherapy and chemo kill off the last remnants of ovaries. Actually I DO feel less menopausey! See, it's an ill wind that blows nobody any good! Now if I could just find a chemo drug that dyes your hair a kind of dark copper.....

Wednesday 24 April 2013

Over the first one, seven more to go.

Just to say that I feel really good today, and am busily stuffing my face! I have made a great vegetable soup, roasted peppers in garlic vinegar and olive oil dressing, grilled salmon with fresh oregano and butter, toasted pasta.... Is this called a bounce back? Pass the beetroot salad this way...
And the weather is better, today I took the goats for a trip over to the neighbours ( yes, the grass was greener) and they had a happy crunch.
And my hands feel better.
Yippee.

Friday 19 April 2013

Feel icky.

Yes. Side effects, ugh. No appetite, pins and needles in my hands every time they get cold, and lots and lots of watery output from my ileostomy. And a kind of just shitty feeling. I know I should have got up and gone for a bracing walk, but the weather isn't co-operating at the moment; this is the weirdest year I have seen in Israel so far, hard rain and COLD! In the middle of April! And cold is not too good for me at the moment. I did try, I got up and walked outside for a bit with a friend who came by, but when the sky clouded over and rain started pelting down, my hands started going numb and even the end of my nose started to go, I chickened out and ran back to bed. None too soon, I couldn't even get my shoes undone because my fingers were completely paralyzed. Luckily after a few minutes in the warm they woke up, but I had learned my lesson- I'm still in bed and am staying here until it gets nicer outside. Hope we aren't headed for a mini ice age.

Thursday 18 April 2013

First Oxaliplatin Infusion; Did it kill me?

No, it did not! After battling awful traffic all the way we finally managed to arrive at the oncology day care center in Meir Hospital on time. It is a fairly big ward, probably about 40 places in all, some in armchair recliners and some beds, depending on the state of the patient. It isn't really new or swish, but is adequate; it gets a little crowded when it is busy and companions have a hard time finding a comfortable place to sit. Oren ended up perched on a high stool crammed into a corner with patient files hemming him in on all sides! The nurses are nice, work hard and are professional and friendly. My nurse was an English speaking nurse from America called Maia.
We started off with a BIG problem getting an open vein. I maybe hadn't drunk enough or whatever, but my veins were not in the mood for giving blood, and after five attempts on my arms the third nurse to try used a vein on the back of my hand. Everyone, including me, thought it would be hopeless, and they immediately sent off blood work and ordered an appointment to put in a port, which is a kind of under the skin permanent catheter. I really don't want a port, it will bother me doing yoga, but it did seem as if there was no choice at that point. However, surprisingly, the back of hand vein was really good, dripped well and gave me no pain at all. I had been told that Oxaliplatin can hurt, especially in a small vein, but this was fine. I just have a kind of feeling of numbness and as though I have got a bit of a fibreglass burn on my arm just over the infusion area and a few centimeters up. So, I asked them to cancel the port and I will carry on this way. Next time is in three weeks and I will try the other hand, there seems to be a good vein there too. The whole procedure took a long time, we arrived at 9.00 and left at 15.30, but next time will be shorter since I won't need blood work, I will do it in the local clinic and I won't need the first time tutorial. I hope we will get a vein open more easily too.
Side effects; I have sensitivity to cold which makes my hands numb and I have pins and needles a lot of the time in them,probably because it is a bit cold today. It doesn't hurt, just annoying and a little difficult to type. No nausea, no feeling of weakness yet, but I haven't got out of bed yet, ha ha ha. I know the floor will feel as though it is frozen metal. No diarrhea as far as I can tell, but it is a bit hard to know with an ileostomy anyway, luckily! No running for the loo for me!  Anyway, this should all go away in the next few days.
 I need to get used to taking the Xeloda, with chemo-brain this is quite a feat. I definitely have some chemo-brain, my short term memory is shot to hell, although it doesn't affect things like playing chess as far as I can see. I can ask the same question and have it answered three times in a row, though, and some things just completely disappear into a black hole. 
So, all in all not too bad, much less than I had feared. I can do this!
And I'm going to yoga today.

Saturday 13 April 2013

Can't eat another meal!!!!

So, my parents have been here all week, today is the last day of their visit, and I am full. Really, really full. Of kebabs and grilled fish and Italian food and calamari and gourmet hamburger and.....
I have been fattened like a lamb ( well, more mutton in my case, I suppose) and am just hoping to avoid the spit now! My parents, who look as well as ever, are flying out in the evening, but that isn't the end of the celebrations; on Monday night Independence Day starts, with fireworks, music and dancing and huge barbecues and picnics on Tuesday. We will have an 'open barbecue' which means that whoever wants to can bring their meat and grill it on our grill, salads and pita bread will be plentiful. It is good timing- on Wednesday I start chemo again, with an infusion of Oxaliplatin and pills of Xeloda. Fingers crossed.
Stomaland is getting better, the new bases and some rings to put round it arrived and are helping, I hope; for the first time I have gone three days without changing bases. I hope my skin will look better when I do change, it certainly itches less. I have become rather daring- I ate an olive yesterday! Actually I didn't mean to, I thought I would just suck it a bit, but it was so tasty I couldn't resist it, started chewing a bit, and just couldn't stop. I did chew well, and I guess it must have been ok. I accidentally ate some pine nuts a few days ago, they were hidden in sauce and they came out whole! Lucky? Or can I start to relax a bit about blockages? I guess this must be a good stoma, I know some people aren't able to eat these things at all. One interesting thing is that I seem not to be gaining weight with all I am eating; I wonder if I am absorbing all the nutrients? Wow, it may be worth keeping the stoma for ever!

Sunday 7 April 2013

Ok, bring it on!

It took a while, but I'm back! I feel fine, Pesach is behind us and chemo hasn't started yet. I do have various little aches and pains, but nothing that can stop me from having fun on the last ten days before getting hooked up. Mum and Dad are here for a flying visit this week, and I mean to enjoy it to the hilt; today we went to Ceasarea to have lunch at Helena's and I had a DELICIOUS spanish mackerel fillet with niuki and a rich sauce containing jerusalem artichokes, olive butter and basil, all blended into a creamy paste. It was excellent. They brought me a big carton of English chocolates too, yum! We sent them back to their hotel with a big bag of avocado, lemons and pecans from Oren's parents garden, so they have their dinner ready. It is really nice to see them and this is the perfect week for them to come, although the weather isn't really cooperating, it is sharav weather today. Sharav is very hot weather which comes with an east wind, drying out the earth and you too if you don't stay in the shade and drink plenty. I hope it will break this evening and then the weather will be nicer for the rest of the week.
In stomaland news, the stoma nurse finally showed up last week and advised me to change to a convex base because my stoma is quite flat and there are little hills of (lets be honest) flab round it, so it looks a bit like a little red castle with a moat surrounded by rolling hills. This is picturesque, but means that it is hard to get a good seal close to the stoma and I am getting some irritation and skin peeling. So, I ordered the convex bases and they should be here tomorrow, I hope. I will be glad if it helps because it gets pretty itchy, and you just can't get at it to scratch properly. (Probably a good thing anyway, it would just get worse.) Apart from that it seems fine, I have been adding foods gradually and nothing has been a problem yet. Even lettuce, an 'advanced' food, went in and hasn't been seen since, hmmm! If I don't chew really well the food tends to suddenly get shot out like a little bullet a few hours later, but it doesn't hurt or anything. If I made a little hole in my bag I could have quite a bit of fun with that, but I'd probably get banned from places. On the other hand a lot of the interesting noises it used to make have subsided, making eating out less hazardous, and the output seems gradually to be getting more organized, with sometimes a few hours of relative quiet. So all in all a good week.

Sunday 31 March 2013

Dehydration, Passover and other fun things to experience

Yes, I got well and truly dehydrated last week. I felt rotten for ages, and did try to drink plenty but didn't realize that with an ileostomy water is only part of the problem. With an ileostomy you can lose a teaspoon of salt a day, and if you drink water and don't replenish the salt you are going to feel very bad indeed. I got to the point of vomiting, feeling faint and dizzy and nearly got Oren to take me to Emergency. With all the water I was drinking my skin was still standing in humps when I pinched it, and my pulse was over 100.  Luckily I had been for blood tests earlier that day and got the results online, saw that I was hyponatremic and realized what I was doing to myself. I got Oren to mix an isotonic solution up from a cup of orange juice, 1/4 teaspoon of salt and water to fill to a liter, and started chugging it down. It took a few hours but eventually I did start to feel better, and since then salt has become my best friend. Unfortunately this was on the eve of Passover, and we had to cancel our visit to Hilah and Eli's; I was fed up because all the girls were there and it was probably really good, but there was just no way I could do it. At least I managed not to end up in emergency!
So, it's been Passover week. For anyone not acquainted with the rather awkward dietary restrictions of Pesach, as it is called in Hebrew, let me explain; tasty things aren't allowed. That is basically it. No bread, nothing with flour, nothing which hasn't been specifically given a kosher for pesach certificate is sold almost anywhere. No beer either, although that bothers me less this year. Having been under the weather I hadn't prepared by buying stuff in, as about 50% of people do here, and got stuck with no bread AND NO PEANUT BUTTER!!!! in the middle of the week. This was serious, I doubted I could manage a week without peanut butter. Suddenly it seemed as though the world was crashing down round my shoulders! Why peanut butter isn't kosher for pesach god knows. Luckily there is a Russian owned supermarket in Hadera, Keshet Ta'amim, and they have no god. Fresh bread rolls, all the things which have disappeared from the shelves of all the other supermarkets and Peanut Butter. Ahhhhhh! And they have good frozen shrimp for a good price, and pork neck cutlets. And bacon. And imported cheese. In short, I took out a loyalty card. I will be back, I cackled as I scuttled home with my haul of goodies.
The funny thing is, I haven't actually opened the jar of peanut butter yet, and tomorrow is the last day of pesach. It just makes me feel better knowing I have it.

Wednesday 20 March 2013

Stitches out, that's better.

Ok so we're home with a lovely chicken shish kebab takeaway after another traipse round Meir Hospital. We did manage to get almost everything done, the only thing I really would like to see is the pathology report from the operation, the annoying thing was that it is ready but not signed by the head of pathology, so we couldn't get it. I will call tomorrow and try to get it. Anyway it doesn't matter to the treatment.
So, we started with Professor Shpitz, got my stitches out and had a nice chat. I wasn't feeling really wonderful, and he said I should be drinking more, so I started drinking water at a fairly high rate and really did feel better fairly soon. I really have to drink a lot with this ileostomy, probably two and a half liters per day is about right, maybe even more.
Then we went to see Doctor Mishaeli and got a prescription for Xeloda, one of the chemotherapy drugs I will be taking. We worked out a treatment plan starting on April 17th, I will be taking Xeloda and Oxyplatin, Xelox is the name of the protocol. I will be doing that for the next six months, what fun. The only good thing is that because of the Xeloda being tablets I can take it at home and only need to come to the hospital for IV Oxyplatin once every three weeks. Also I won't need a port, which makes me really glad, I've already got enough bits which are going to make doing yoga interesting.
Then we went to talk to the matron of the oncology ward, and to my surprise found that she was one of my teachers when I was studying nursing in the nineties! I like her so much, it makes it much nicer to think of coming to the ward and she is also a very good nurse. She arranged a session with one of the nurses on the first day to learn about Xeloda; I said I had already had Xeloda but never any guidance and she went mad at Dr Mishaeli for not sending me for it before. She also said I should have had appointments to check hand and foot syndrome. Oh dear, he is going to get smacked really hard, I think. I'm just glad I managed to do the Xeloda without dragging myself all the way to Meir for check ups as well as Beilinson for radiation, it would really have been over kill, and the nurse in Beilinson did keep an eye on side effects of Xeloda.
Meanwhile Oren went up to the surgical ward and retrieved my CT and PET scan disks, lucky we remembered before the file went down to the archives. So, a busy day, and I'm glad to be home.

Tuesday 19 March 2013

Finally....the full story!

Well, it's now eight days since the operation and I am starting to feel a little like my old self, just a self which has been punched in the stomach. Really, I have almost no pain and what there is is because of the metal stitches which will be removed tomorrow. I have started walking a bit and can feel the strength of my leg muscles compared to the weakness of my diaphragm, I suppose this will get better gradually.
So, how was the operation, you ask? Actually I was asleep at the time, thankfully, but it did have its moments of mini-drama. After I went off to sleep and was intubated, as well as having a urinary catheter and a stomach tube inserted, as is standard practice a dose of IV antibiotics was started. I don't expect I will ever know quite how allergic a reaction I had to it, hospital notes are dry and often incomplete, but at some point I had steroids and fluids, generally a sign of quite a reaction, and someone in Recovery said something about my tongue swelling up. I'm just glad I was asleep, no worries! Because of this and maybe for other reasons, the operation took longer than planned, and when I got to Recovery I was hypothermic, 34 degrees. Again, I only know because I was told so, I just remember a wonderful heating blanket and lots of morphine, grabbing as many vials of water as I could every time I surfaced and actually feeling pretty ok.
I stayed in Recovery overnight, and the next morning my stomach tube was removed and I went up to the ward. When I was a nurse I worked in Recovery some of the time, and knew all the nurses so it was strange after so long to see them again. To me it seems as though nothing has changed for them, they are just older, while I have changed a lot, sailed a third of the way round the world and seen so many amazing things. It made me happy that I chose to leave when I did. They were really good to me, I got so much morphine I could practically have walked up to the ward, and it was a nice way to start recovering.
On the ward I spent the morning in bed and managed to get up and sit in on a chair for a few minutes in the afternoon. The next morning I had my first shower, sitting down because I was so dizzy, and sat in a chair a bit again. Then gradually I got less stiff and sore until I could get up and go for meals, walk round the ward and so on. The important thing is not to try to do too much too soon, you could easily faint that way. By the time I was released on Sunday I could already walk down to the carpark and get to the car, although I was really glad to get in and rest.
The ileostomy started to work just about immediately, and I got a bit of guidance from the stoma nurse on Surgery B ward and plenty of supplies for meanwhile. They expect you to deal with the stoma more or less from the first day, so I retaliated by emptying it into a plastic bag and stowing the bag under the bed until a nurse came past and threw it away. To be honest I really couldn't do much else, I didn't want to call the nurse every time and the first few days the stoma was hyper active and had a huge output, every time I looked it was bursting full. Now it seems to be gradually settling down, the output changes a lot depending on what I eat and goes from completely liquid to quite jelly like, and the amount of output is quite a lot less. I have to be careful to drink a lot, and managed to get dehydrated on the ward on one of the first days. I had IV fluids and drank a lot, then couldn't stop peeing for hours! The next day it nearly happened again, but I caught myself early and started drinking and was ok. You just have to re-educate yourself, you have a new normal for drinking, eating and shitting!
As for food, I was hungry from the start and couldn't wait to get some calories in me. I started with clear soup on the first day and gradually added in mashed potato, white cheese and all the soft food they had after that. By the third day I managed some chicken meatball- wow did that meatball taste good! Now I am up to well cooked chicken, white rice, avocado and hummus, although I am not sure my stomach was really happy with the hummus- it was commercial stuff with loads of added vegetable oil, I will make my own and try again.
As for activity, I made meatballs with loads of vegetables in a great tomato based sauce yesterday. I felt pretty exhausted afterwards but only for a few minutes, then I got up and cooked rice too. I am walking a bit as I said, I think after the metal stitches are out I will be able to do more.
All in all, not too bad an experience, I saw a lot of old friends and felt that I had made the right choice of surgeon too, based on my recovery so far. I don't think I would actually recommend having major surgery if you don't have to, but it isn't the end of the world at all!

Sunday 17 March 2013

Home sweet home at last!

I'm home! It's been a hard week and I'm really exhausted, but feel very happy to be home. I'll update the full enthralling story tomorrow, for now I'm just enjoying having internet again and not having to eat hospital food any more!

Saturday 9 March 2013

T minus 1

Ok, this is just a last quick post before I shut down my computer. I won't be blogging while I am in hospital, I think I could do it via email or with one of the girls iphones, but I'm guessing mainly swearing would be the content of my posts anyway, so maybe better radio silence.
Today, my last day as an un-cut-up person, was pretty nice. Oren went to run in the Kfar Saba 10k run and I went with him. It was a hot day and he was still a bit ill from the flu that we all had, so he was happy with the result of 52 minutes (and a few seconds), he was 40th in his category from 84. Not bad for a first competitive race, and well done to him too for losing 13 kilos in the last three months. It's amazing what a little fear can do...Oren had his colonoscopy a few days ago too, and guess what? He had a polyp. The doctor took it out and told him how lucky he was not to have waited until his 50th birthday to be checked, who knows how big and nasty it could have got by then. He needs to have another colonoscopy in 3 years, and will get the biopsy report on it in a few weeks. So, people, get your bums checked!!!! It could save your life.
After the race we went home and showered, then met Hilah and her husband Eli in Bandy, a nice restaurant near home. I had a huge entrecote steak, chips and creme brule, the best meal I could think of as my last good one for a while.
Fingers crossed, I'll be back next week some time, the hospital stay is supposed to be up to nine days but it depends how I feel I expect. I will have severe internet withdrawal symptoms.

Thursday 7 March 2013

They brought it forward!

This is going too fast for me! The hospital has just called to say they are rescheduling the operation for Monday. This means I will be in hospital from Sunday morning already. I suppose I should be happy, one less day of thinking about it, but actually I feel as though a day of freedom has been taken away. I had plans! I was going to go to one last yoga class, get some shopping done so Oren will have something to eat while I am in hospital....
Nothing really earth shattering, I guess. It's just a bit of a shock, suddenly it is a real event which is going to happen. Sunday is close, suddenly we're at T minus 2, engines on, final flight checks in progress. Houston, we have a problem, the astronaut's run off screaming.

Monday 4 March 2013

Pre-Op is done, 8 days and counting...

Yesterday was pre-op day, this was just a quick check by a surgeon to make sure I am fit for the operation and that my blood tests and so on are ok. I passed with flying colours and have my official invitation. At 9.00 in the morning on Monday there is a bed with my name on it in Surgery B ward of Meir Hospital waiting for me to jump in, my file is ready and my name labels are printed. The operation isn't until Tuesday, I guess they want to make sure I'm actually going to be there, not chicken out at the last minute or anything, I bet they get that a lot.( Hello, is that the hospital? Yes, she isn't coming, she's decided she wants to have steak and chips and go for a movie instead. Sorry....)
 I expect Monday will be a mixture of boring and nerve-wracking, but will also include extra fun such as restricted food intake from lunch, a fast from midnight and probably some kind of enema, diplomatically they haven't said anything about that. I expect the first I will know about it will be when the nurse appears with it.
Since I am allergic to some kinds of plaster and was worried that I would wake up with a big rash on top of everything else, the doctor who did my intake forms kindly got me two samples of stoma base to stick on at home. I had fun scaring Oren with them, and slept with one stuck on my belly in about the right place; good practice but it really brought it home to me that I am going to have big body changes. Lucky my stomach isn't really a bikini stomach anyway, and hasn't been for years. Anyway, no allergic reactions, so that is ok.

Wednesday 27 February 2013

The joys of sneezing...

It's such fun to have 'flu! No really, it's a wonderful illness. First of all, it means you can snuggle up in bed, after all you look sick, you sound sick and you feel sick. Second, no one says how well you look with it. Thirdly it goes away by itself. ( eventually, I hope).
Actually I would prefer not to spend any of the precious time before the operation sniffling and sneezing and feeling lousy, but better now than later; I have a feeling that sneezing with an abdominal incision is a big no no. It's put a hold on my yoga aspirations though, but I think tomorrow I will manage to go. I've been dragging myself around complaining all week, enough already! I can't hear anything in one ear, I am dying to get that 'pop' that clears it out. Everyone here has had this 'flu, Oren is the last in line and got it from me I guess; unluckily for him he has his colonoscopy tomorrow, so he has had to do all the awful preparation with drinking the nasty drink and so on while feeling terrible anyway.
Meanwhile I have done all the blood tests, x-ray and ECG for the op., and am ready for the pre-op on Sunday. My leukocytes are a bit low, hope it isn't a problem. On the bright side my cancer markers came back really low, looks like the radiotherapy really knocked the stuffing out of it. The official answer from the PET-CT came a few days ago, it is as the technician said, it looks good. The actual tumour is 2 cm now, down from 3.2 cm, and there was almost no take up of radioactive marker, which means there is very little activity in the tumour- it's nearly dead in my opinion. What's left of it will soon be dangling from the end of a pair of tweezers! Ho Ho Ho! (and for anyone in the Philippines, a bottle of Rum!) ( I miss that Rum!)

Sunday 10 February 2013

PET scan day is over...

Good news! The official results will be out in ten days, but the technician who did the scan was very nice, and told me that there are no metastases anywhere from my head to toe, and furthermore the original tumour has shriveled up and is hardly visible at all.
I am so happy! It doesn't mean I don't need to be carved up and bombarded with poisonous chemicals during the rest of the year, but it does mean that I have a good chance of getting rid of the cancer completely.
The scan itself was uneventful, I was given an injection of radioactive isotopes and then sat for about an hour drinking pink water with contrast medium in it. Most people say it is awful, but I don't mind it much, it's pretty tasteless. Then I was called in to the PET scanner. I had to lie on a narrow bed with my arms over my head while the bed hummed and buzzed its way into a white tunnel. Kind of like being the hot dog in a big bun ( can you guess I had to fast for four hours before this?). Then it came out again, and that was that. Easy, painless, amazing.
I have been doing research into who survives cancer, and how, or why they do. I have come to some simple answers, and mean to implement them. The people who beat cancer;
  1. Exercise daily
  2. Reduce blood insulin levels by eating less simple carbohydrates ( a low GI diet)
  3. Keep stress levels down
So, that's what I need to do. I have already been on a hunting expedition and have managed to capture and drag back to my lair the carcasses of several types of bean. Hummous, thankfully, is a low GI food, and avocado is too, so I think I will manage to stave off starvation. Actually, lots of foods are low GI ( GI means glycemic index), just not the ones I used to cram myself with. Fruit and vegetables are all ok, except banana which is a bit iffy. Most meat and fish is ok too, just really processed stuff with flour in is out. Peanut butter is good, although bread isn't too good, so you just have to eat it off the spoon, oh dear.
Exercise is easy, I have started doing yoga seriously again, after too long. My whole body aches, but it deserves it anyway. I am walking too, about five kilometers a day.
As for stress levels, I'm pretty well off there too, no big stressors around. I'm living in a quiet, pleasant place where I can hear the birds singing in the morning. Actually singing is an understatement, they seem to have a competition for loudest bird every morning. I don't have to work if I don't feel like it, I have no money problems ( no money, no problems, you know...), and I have an understanding and supportive partner. So, I have nothing to complain about!

Saturday 2 February 2013

I feel...

BETTER! Now the radiotherapy and chemo is over (for now...) and I have had a week free, I feel good. Really good. My bum is getting gradually better, according to touch it still feels a bit like the grand canyon but it doesn't hurt too much any more. I think at least some of the good feeling is from not having to sit for three hours in the car to and from Beilinson, and now I have time to cook healthy food, do my jigsaw puzzle ( 1500 pieces, a world map from the 1600's, I think, there is no date on it) read and do yoga.
Today I started walking again. I used to walk a few kilometers every day, but gradually stopped during the last few weeks. It has been rainy and cold and I just felt tired and icky, but today was a lovely spring day, fresh and sunny after yesterdays torrential rain. I got Oren in tow and set off round the old peoples home over the road, there is a good path through the fields. We did a big circle round, back to the road and ended up ( somehow, ha ha) in the shopping centre, where I got some new sweat pants, then home happily. Oren got some running shorts, he has managed to lose 7 kilos and is running every day.
I have made a decision; I shall not be dying from this cancer, or any other cancer ( just to be clear about it).

Tuesday 29 January 2013

So, today we went to the oncologist....

And he didn't really have much new to say, but at least I did manage to winkle out of him the chemo protocol I will be having after the operation. Xelox, which is pretty good because I only need to get to the hospital once every three weeks, the rest is pills. Xelox is short for Xeloda and Oxyplatin. Oxyplatin is a bit nasty, but I will get it just once every three weeks, so I guess a few days down time every cycle is all really. I am still not going to go bald, according to him! No-one would believe I have cancer, really, I mean look at all this hair!
Sorry it's a bit blurry, it's hard holding the computer still up in the air.

  I will have eight cycles, so six months, and then a month or so rest, then reversal of the ileostomy.
I am getting a bit ahead of myself, probably because I would like to be able really to get it all over with. I do feel better knowing what is coming along. On the other hand, I now have a date for a PET-CT, ( 10th of February) which is really definitive for metastases in the pelvis, so I can start worrying about that now. Good, that gives me something to do!

Thursday 24 January 2013

No Mets Confirmed

I have just ( finally!) got the complete report from the chest CT I did two weeks ago, and it is clear,as Prof. Shpitz thought. This is really good news, and gives me a lot of hope of beating this thing. Now I just need to get it cut out, chemo the hell out of any cells left floating around and hope for the best.
The operation is the next big thing, and the biggest issue is that  I will have a temporary ileostomy when I wake up. This doesn't worry me in the least, since I have seen loads of them and know how to take care of it. For Oren it is a bit more difficult, but I am gradually educating him, showing him pictures of ileostomies and talking about it, and he is getting used to the idea. I want to avoid waking up after the operation and having him go, " What on earth is THAT thing?!!!" I most likely won't be in the best state for explaining calmly and reasonably at that point.
Although it is only temporary it will be quite a while, probably six months or more. The reason I need an ileostomy is because during chemotherapy the danger of sepsis from small leaks in the operation site is deadly, because the immune system is depressed. The area of the operation has had radiotherapy and is not healthy normal tissue anyway, so just taking the tumour out and sewing the ends together isn't a good option, although some surgeons do do it, depending on what they see during the operation. I prefer the safe option, I have no intention of getting rid of cancer and dying of sepsis!
 There are quite a few sites giving advice on ileostomies on the web, and looking through them I found some hilarious advice. One site recommends buying a swimsuit 'with a matching pattern to hide the bag' . What, with little baggie prints all over? Hum, is there a real one in there somewhere? Another says that rugby is best avoided. Damn, I was planning on making the team this year! One site gives advice on foods best avoided and manages to recommend cutting out all of the major food groups.
One thing which has me completely in shock is the new theory put forward by James Watson, one of the scientists who discovered DNA. It seems that antioxidants, for instance vitamins and lycopenes among others, actually harm cancer patients. The cancer grabs the vitamins and uses them to protect itself, so that radiotherapy and chemotherapy have much less effect. The cancer can also become metastasized earlier. When I looked for support for this theory I found that many oncologists in the US have been quietly telling their patients for a while not to take vitamin supplements. It has been known for several years that supplements of vitamin E in particular actually shorten the average  life span- now we know why. I am very glad that I haven't taken any vitamins, and even went and chucked out some enriched milk from the fridge! Now I check all the food wrappers in the supermarket to make sure there are no added vitamins in anything. No escape that way, f*****g tumour! You're surrounded, come out with your polyps in the air!
I'm not going to complain about my bum today, because it is so sore I don't want to think about it. The nurse took a look last visit and then opened the 'special cupboard', the one you only get to look inside during the last bit of radiotherapy, and gave me so many creams and gels I could open a sore bum shop. Oh well, only two more sessions and then a big long bum rest.

Wednesday 16 January 2013

Date for the Operation!


We went to see Prof. Shpitz today. He looked at the chest CT, which we are still waiting for the interpretation of ( I did it about 8 days ago) and said it looks ok to him, no metastases. That was good to know! He did a physical exam and says the tumour feels more mobile, which is good, and may have shrunk a bit, it is hard to know from touch alone. I wanted to hear that it had gone altogether, but he says that only happens in 10% of cases. Then the important bit; the operation will be on the 12th of March, exactly six weeks after the end of radiotherapy. I go into hospital on the 11th for pre-op. He will do the operation himself, something which I am very glad to hear.
We had a good day; after seeing Prof Shpitz we went to make an appointment with the oncologist for two weeks time, talked to the secretary of Surgery B ward and got all the paperwork sorted, got a list of blood tests and so on, got Beilinson to let me come early for radiotherapy today, went to buy sneakers for us both, had lunch in the middle and came home satisfied. I will need a PET CT before the operation and a gynecological exam and a chest x-ray and an ECG, all ordered through my GP, so I'll be tromping round all the medical facilities of central Israel for the foreseeable future! At least I only have one more week of radiotherapy to go!
I also am happy to say that my taint (thanks for the word, Eddie!) is feeling better. 
That's all my news!

Wednesday 9 January 2013

Halfway!

Fifteen doses of radiotherapy done, thirteen to go, and I'm still standing. Only because it hurts to sit though. No, actually I'm just kidding. So far so good, I have a few side effects but nothing really bad, and I am still working part time. Chemobrain still hasn't kicked in, at least I can still beat Oren at chess some of the time, although he blames his defeats on absorption through the skin!
Now, I'm going to talk about ladies private parts, so anyone who doesn't want to know should tune out here!  Meanwhile, here is a photo of me wearing my new beautiful scarf and hat knitted for me by Anat, my sister in law. It's really cold and rainy here just now, this is now part of my survival kit with a thick angora coat every time I go out.

Now, on to ladies bits, specifically vaginas. If there is anyone in the process of starting radiotherapy to the rectum reading this, I have one good piece of advice; get some thick, sticky aloe vera gel without alcohol in it ( unbelievable that some kinds have alcohol in) and start applying it around the entrance of your vagina as soon as you start treatment. Not before the daily treatment, when the area has to be clean and dry, but right afterwards. Maybe you will manage to avoid what I have, which is a feeling as though someone has stuck a long, thick sharp nail into my vagina every time I go to pee. If I put aloe vera on first, it's much better, almost no pain at all, but only the thick one, forget about natural juice from the leaf, it's not thick enough to stick on.
Other places I spread it include my bum, which is just starting to smart now, and the area between there and my vagina, which doesn't hurt yet but is the only place the nurse expects it to.
So far, that's about it for side effects. My pubic hair hasn't fallen out just yet, but it may be growing a bit slower. I'm a bit fed up about that, I thought at least I was going to get a free brazilian wax. My head hair seems to be growing more slowly, but I can see my roots again so it is growing. No hand and foot peeling, no mouth sores, nothing. I know the second half of the course is the hardest because the effect accumulates, but I am starting to hope it won't be too bad at all, after all it is only three more weeks! Then a few weeks of complete rest before the op.
Today is probably the rainiest day in Israel since records began, no kidding. It is HEAVING it down outside, and it is COLD. Today of course is the day I go for my chest CT and after that radiotherapy, and of course I have to go up and down the road with the worst traffic jam in Israel, Jabotinsky Street from Geha junction to Bnei Brac and then all the way back to Beilinson hospital. It's going to be a nightmare, and I'm just glad that Oren is taking me and I don't have to go on the bus. Tuesday is my day off, and I have spent it mostly in bed until now, in this weather that is the place to be. I really don't want to get up, maybe I can take the duvet with me?
Update; yesterday the internet went off before I could post this. Everything went fine, we got to Bnei Brac early, did the CT and battled our way through enormous traffic jams to Beilinson, then home in the driving sleet and cold, gusty wind. Today snow is falling in Jerusalem and it is hailing outside, Hadera is partly under water and the road from here to Binyamina has just reopened after being flooded. But we will soon be on the way to Beilinson as usual....

Thursday 3 January 2013

Sheva has a new home.

Nothing earth shattering has been happening here, just taking the pills, going to radiotherapy sessions, feeling fine. The good news is that Sheva has found a new home. Sheva is our beautiful cross breed German Shepherd, she traveled with us all the way from Israel and has been a faithful companion and guard dog. When we came to Israel, thinking we would be back soon, we left her with a good family, but meanwhile they have left Puerto Princesa and Sheva has had to stay with their housekeeper. She has been well looked after, but this couldn't be a permanent solution. We have been very very lucky in that we know quite a few of the expat community in Puerto, and have managed to find her a really good home with Jack, an expat from Australia who loves dogs. He has sent us some photos of Sheva looking relieved that she won't have to improve her typing skills! He was scandalized that she has been fed dry food only; we didn't have the courage to tell him that we always fed her dry food too. No wonder she looks happy!