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.
Sunday 31 March 2013
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.
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!
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.
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.
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.
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.
Subscribe to:
Posts (Atom)