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.
Wednesday 24 April 2013
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.
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!
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.
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.
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