I won't go into the details about how I ended up on Israel a full week early. Suffice to say that I am here and that my brothers flew in with my parents, one from Houston and the other joining them in Geneva.
We went to pick my parents up from the airport last night. I didn't entirely know what to expect, so I tried not to expect anything. So the report? His jaundice is quite bad, and he has trouble walking. The biggest problems (if you can call them that) on a day-to-day basis are his cognitive problems. He doesn't know where he is going, he forgets what he is doing after a few seconds and he is talking entirely without reason. Sometimes I think the words that he is saying are not the words that he means, but sometimes he is honestly just talking crap. In his better moments he gets very angry and the reason they got in so late last night is because he absolutely refused to get on the plane. Later he refused to get out of the car (while all the while talking to my brother as if he was an employee of the airport) and then he cried going upstairs to bed. All of these things form a pattern for me that he believes that this is the last time he will be doing any of these things. He knows, if only subconsciously, that he has come home to die. Smart man.
In the meantime, it's quite group effort to handle him all the time. Trying patiently to convince him to do anything is a full-time job, so we take turns, depending on what the situation is. He is still very angry, so we tend to tag-team him, so when he gets mad at one of us, the next one can jump in.
He looks a bit better this morning and is not completely off his head, but we will have to look at what the next few days will bring. I will probably be updating here fairly regularly, as I am going to be in Israel for the foreseeable future.
It is at times like this that I am grateful that I have a close-knit, supportive family. We truly are all in it together and will pull together to try to make this as painless as possible.
Showing posts with label waiting. Show all posts
Showing posts with label waiting. Show all posts
Sunday, 11 December 2011
Friday, 18 March 2011
"I wanna go home!"
Not me, actually, but rather my father, who is getting some cabin fever after having been here for 5 days. I am sitting in the corner of the hospital room and my father is struggling into a t-shirt. He doesn't want to get up and move around but he still wants to be released. And then he wants to go to the office on Monday. And then he wants to fly to Geneva next week. He's on antibiotics for the next two weeks, so we might be able to convince him to stay put.
So, where are we today? They extracted 3 litres of fluid from his abdomen but he is still incredibly bloated (like pregnant bloated). The initial tests show a high number of white blood cells in the fluid, which suggests the presence of an infection (possibly now gone). This is good, believe it or not, because it means that he could be feeling so crappy due to the infection rather than because he is dying.
However, an ultrasound yesterday revealed that his portal vein is partially blocked, which means that this is going to keep happening if they don't find a way to solve it: he will keep retaining fluid and losing albumin and feeling crappy. We have to wait for his regular oncologist to come back from holiday to investigate options. It's not a very good state to be in,though, so we are waiting to find out what will be going on.
Further, we are waiting to hear about what else they find in the fluid from his abdomen. They are looking for cancer cells, which would be the equivalent of a further metastasis. This would be bad. Worse, in fact, than the other stuff. So we wait, again.
I keep trying to fly home. It was supposed to be Wednesday. Then it was Friday. Now it's Saturday. But we are waiting for my father to be released from the damn hospital. I also have a deal with him that he will cooperate with the nurse that they are hiring in to help and do his best to get some exercise, as it make him feel better. I am writing it here as a testament that we made this deal, because he promised. His health depends on this.
So, where are we today? They extracted 3 litres of fluid from his abdomen but he is still incredibly bloated (like pregnant bloated). The initial tests show a high number of white blood cells in the fluid, which suggests the presence of an infection (possibly now gone). This is good, believe it or not, because it means that he could be feeling so crappy due to the infection rather than because he is dying.
However, an ultrasound yesterday revealed that his portal vein is partially blocked, which means that this is going to keep happening if they don't find a way to solve it: he will keep retaining fluid and losing albumin and feeling crappy. We have to wait for his regular oncologist to come back from holiday to investigate options. It's not a very good state to be in,though, so we are waiting to find out what will be going on.
Further, we are waiting to hear about what else they find in the fluid from his abdomen. They are looking for cancer cells, which would be the equivalent of a further metastasis. This would be bad. Worse, in fact, than the other stuff. So we wait, again.
I keep trying to fly home. It was supposed to be Wednesday. Then it was Friday. Now it's Saturday. But we are waiting for my father to be released from the damn hospital. I also have a deal with him that he will cooperate with the nurse that they are hiring in to help and do his best to get some exercise, as it make him feel better. I am writing it here as a testament that we made this deal, because he promised. His health depends on this.
Sunday, 10 January 2010
It's going to be a long road ahead
I have been working my backside off over the last couple of days to try to catch up on all the work I was not doing in Israel because of the shuttling back and forth to my parents. Yeah yeah, good excuse.
Right, so I suppose I will start with the important news, which will follow into the rest of this post:
We have to postpone the wedding/civil partnership thingy. My dad, who about a month ago, agreed to come, has now asked me to push it back indefinitely, as he does not have the "physical or emotional strength" for it right now. The theory is that, come April or so, my dad will have his surgery (we hope). Then one of two things will happen. First, they could open him up, remove the tumour and then he has 6-12 months of recovery and then remission. But it would put him at post-op in August, which would be bad. Second, they could open him up, see that it has metastised everywhere, go "holy shit!", close him up and then we have approximately 6 months to plan as fast as we can.
We are disappointed, obviously. And it's all well and good saying we plan and cancel, plan and cancel (my mantra for life right now) but weddings are difficult things to plan and cancel. So we are in much more indecision than ever. We will know more next week.
"We will know more next week" is starting to drive me up the wall, by the way, as it is always answers that come with many more questions.
However, what I really wanted to talk about was adapting and complacency. It's been about 4 months since my father's diagnosis. In the beginning we were upset, panicked and searching for answers. However, you can't keep up that state of panic for long. It is simply unsustainable. So you have to adapt. You get used to chemo and doctors always being around. If you are like me and are not the person with the cancer, you accept that you are not going to know every medical update and stop worrying about that too much. And you also stop worrying about death too much, I suppose. Que sera sera, while we can't predict any better. I know that my father is getting the best possible care and all the rest is up to the Fates. There is nothing I can do more than I am doing and continue to do.
But this means that, with my own resettling into something of a routine, so has the rest of the family. When you are not worrying about Cancer all the time, the old life worries come back. And suddenly you remember that you never really liked a certain member of the family or that you were having a problem with this and that area of business. Slowly life creeps back on you and you realise that you cannot stem the Tide of Life with the Dam of Cancer. It just won't hold it back. But you still feel like Life owes you something in return for the Cancer, so you still expect it from the people around you. And you suddenly find yourself in a Jesus-like position, where you are expecting the Tide to stop (with the help of the Dam, of course) and the water is welling up all around you and you don't know why. "What do you mean, you can't do that for me? Don't you know that I have cancer?"
I suppose, in my own oblique way, what I am trying to say is that things were easier when my only job was to acquiesce to what my father wanted. But I have found that, in matters of daily life, cancer, like love, does not conquer all, regrettably.
And we are nowhere near done. I expect that, for better or for worse, this will follow us for the whole of 2010. And that seems like a really long time to stem the Tide.
Right, so I suppose I will start with the important news, which will follow into the rest of this post:
We have to postpone the wedding/civil partnership thingy. My dad, who about a month ago, agreed to come, has now asked me to push it back indefinitely, as he does not have the "physical or emotional strength" for it right now. The theory is that, come April or so, my dad will have his surgery (we hope). Then one of two things will happen. First, they could open him up, remove the tumour and then he has 6-12 months of recovery and then remission. But it would put him at post-op in August, which would be bad. Second, they could open him up, see that it has metastised everywhere, go "holy shit!", close him up and then we have approximately 6 months to plan as fast as we can.
We are disappointed, obviously. And it's all well and good saying we plan and cancel, plan and cancel (my mantra for life right now) but weddings are difficult things to plan and cancel. So we are in much more indecision than ever. We will know more next week.
"We will know more next week" is starting to drive me up the wall, by the way, as it is always answers that come with many more questions.
However, what I really wanted to talk about was adapting and complacency. It's been about 4 months since my father's diagnosis. In the beginning we were upset, panicked and searching for answers. However, you can't keep up that state of panic for long. It is simply unsustainable. So you have to adapt. You get used to chemo and doctors always being around. If you are like me and are not the person with the cancer, you accept that you are not going to know every medical update and stop worrying about that too much. And you also stop worrying about death too much, I suppose. Que sera sera, while we can't predict any better. I know that my father is getting the best possible care and all the rest is up to the Fates. There is nothing I can do more than I am doing and continue to do.
But this means that, with my own resettling into something of a routine, so has the rest of the family. When you are not worrying about Cancer all the time, the old life worries come back. And suddenly you remember that you never really liked a certain member of the family or that you were having a problem with this and that area of business. Slowly life creeps back on you and you realise that you cannot stem the Tide of Life with the Dam of Cancer. It just won't hold it back. But you still feel like Life owes you something in return for the Cancer, so you still expect it from the people around you. And you suddenly find yourself in a Jesus-like position, where you are expecting the Tide to stop (with the help of the Dam, of course) and the water is welling up all around you and you don't know why. "What do you mean, you can't do that for me? Don't you know that I have cancer?"
I suppose, in my own oblique way, what I am trying to say is that things were easier when my only job was to acquiesce to what my father wanted. But I have found that, in matters of daily life, cancer, like love, does not conquer all, regrettably.
And we are nowhere near done. I expect that, for better or for worse, this will follow us for the whole of 2010. And that seems like a really long time to stem the Tide.
Monday, 7 December 2009
Business as usual, i.e messed up!
Over the last couple of days, we have been dealing with mundane yet important matters regarding the Christmas period.
Every year, in December, my family has held a memorial service for my grandfather, who died in 1996. My father is very keen on this and has insisted that everyone be together for this occasion. It's the equivalent of a religious holiday for him (we can talk about the morbidity of this another time). My brothers have managed to worm their way out of it a couple of times in the past but, as far as I know, without fail, I have turned up every year to entertain my father and grandmother's friends as they pretend they are celebrating the life of someone long dead while scoffing all of our food (cynical? moi?).
In any case, my Grandmother was desperately hoping that my dad had forgotten about it this year and that, if she kept her mouth shut, the appropriate window of time would pass without the memorial taking place. Seriously, this is her husband we are talking about, and even she is fed up of it.
But, lo and behold, as soon as my father's chemo schedule was set (which he had the first dose of yesterday, by the way) he was talking about dates for the memorial. It usually happens on the last Friday before Christmas. Only problem is that on the 21st he is having chemo in Geneva. So the 25th it is! It is a Friday, after all.
Now, my mother has some serious objections to memorials this year, anyway. Throughout these last few months, with my father's immune system being compromised, no one has been allowed near him if they had a cold, sniffle, funny coloured tonsils, etc. Surgical masks are given out like sugar lumps with your coffee. So the idea of him standing outdoors, in midwinter (albeit Israeli winter), surrounded by 100 people who will be coughing on him and then inviting them all back to a very small flat hardly seems sensible. But apparently catching a virus that could kill him does not faze my father if it is in the name of a service to remember someone who is already dead.
So, in short, the argument is ongoing. There has been shouting and crying and my grandmother is about to add her considerable gravitas to the discussion.
In the meanwhile, I have prices for 9 different flight options, and my fiancee is losing her rag, as we can't tell her mother whether we will be turning up for Christmas in Dorset.
Otherwise, I think the chemo is ok. He is clearly impatient to get on with something. He just happens to be making our lives difficult in the process!
Every year, in December, my family has held a memorial service for my grandfather, who died in 1996. My father is very keen on this and has insisted that everyone be together for this occasion. It's the equivalent of a religious holiday for him (we can talk about the morbidity of this another time). My brothers have managed to worm their way out of it a couple of times in the past but, as far as I know, without fail, I have turned up every year to entertain my father and grandmother's friends as they pretend they are celebrating the life of someone long dead while scoffing all of our food (cynical? moi?).
In any case, my Grandmother was desperately hoping that my dad had forgotten about it this year and that, if she kept her mouth shut, the appropriate window of time would pass without the memorial taking place. Seriously, this is her husband we are talking about, and even she is fed up of it.
But, lo and behold, as soon as my father's chemo schedule was set (which he had the first dose of yesterday, by the way) he was talking about dates for the memorial. It usually happens on the last Friday before Christmas. Only problem is that on the 21st he is having chemo in Geneva. So the 25th it is! It is a Friday, after all.
Now, my mother has some serious objections to memorials this year, anyway. Throughout these last few months, with my father's immune system being compromised, no one has been allowed near him if they had a cold, sniffle, funny coloured tonsils, etc. Surgical masks are given out like sugar lumps with your coffee. So the idea of him standing outdoors, in midwinter (albeit Israeli winter), surrounded by 100 people who will be coughing on him and then inviting them all back to a very small flat hardly seems sensible. But apparently catching a virus that could kill him does not faze my father if it is in the name of a service to remember someone who is already dead.
So, in short, the argument is ongoing. There has been shouting and crying and my grandmother is about to add her considerable gravitas to the discussion.
In the meanwhile, I have prices for 9 different flight options, and my fiancee is losing her rag, as we can't tell her mother whether we will be turning up for Christmas in Dorset.
Otherwise, I think the chemo is ok. He is clearly impatient to get on with something. He just happens to be making our lives difficult in the process!
Wednesday, 2 December 2009
Decisions, Decisions
So, I fell asleep with the phone on my chest last night, until the call finally came. This will mostly be a medical post, so bear with me.
In short, the spot on my father's liver has not moved. It's a bloody fat deposit, like we claimed all along. Which means that his cancer has always been localised, which is fantasitc news. Also, the tumour is exactly the same size and does not seem to be spreading. Also good.
Now, what MD Anderson would like to do is send him for another round of chemo (with different chemicals - don't ask me why) and then radiation and then, hopefully surgery. We like surgery. Only problem is that my parents have French Surgeon who is willing to operate on it now, more or less. MD Anderson are worried that this could cause the cancer to spread (remember the angry tumour? We don't like him) thus effectively killing him.
The question therefore remains: Do we go the "safe route" and risk the cancer spreading despite the chemo, rendering it inoperable? Or do we operate now and take the risk that it will fail?
My parents are discussing it, along with Family Friend Doctor and many other people. It's the best possible outcome so far, but still leaves my family with some difficult choices.
After my parent's rang, my brother rang, thus waking me up again.
-"Have you heard anything?"
- "Um, yes. They called about 20 minutes ago"
- "BASTARDS!"
- "I think they may have rung me first because they know that I am 6 hours ahead of them and you are not"
- "BASTARDS!"
So, that's the update. Good news all round, but I am waiting to find out what they think further.
For me, this either means that my dad will be back in Israel for more chemo, which I might skip this time around, or he is going for the surgery, which I will definitely be joining them for.
It's a big like a soap opera cliffhanger.
Will she stay or will she go?
In short, the spot on my father's liver has not moved. It's a bloody fat deposit, like we claimed all along. Which means that his cancer has always been localised, which is fantasitc news. Also, the tumour is exactly the same size and does not seem to be spreading. Also good.
Now, what MD Anderson would like to do is send him for another round of chemo (with different chemicals - don't ask me why) and then radiation and then, hopefully surgery. We like surgery. Only problem is that my parents have French Surgeon who is willing to operate on it now, more or less. MD Anderson are worried that this could cause the cancer to spread (remember the angry tumour? We don't like him) thus effectively killing him.
The question therefore remains: Do we go the "safe route" and risk the cancer spreading despite the chemo, rendering it inoperable? Or do we operate now and take the risk that it will fail?
My parents are discussing it, along with Family Friend Doctor and many other people. It's the best possible outcome so far, but still leaves my family with some difficult choices.
After my parent's rang, my brother rang, thus waking me up again.
-"Have you heard anything?"
- "Um, yes. They called about 20 minutes ago"
- "BASTARDS!"
- "I think they may have rung me first because they know that I am 6 hours ahead of them and you are not"
- "BASTARDS!"
So, that's the update. Good news all round, but I am waiting to find out what they think further.
For me, this either means that my dad will be back in Israel for more chemo, which I might skip this time around, or he is going for the surgery, which I will definitely be joining them for.
It's a big like a soap opera cliffhanger.
Will she stay or will she go?
Tuesday, 1 December 2009
Today's the Day (apparently)
He's still feeling wonderful. This scares both me and Sensible Brother, who see this as an upset of the statistics. He, quite rightly, points out that, every time my father has seen a doctor, it has been bad news: "Oh, it can't be a tumour... it's a tumour", "There is a 70% chance it's not cancerous... it's cancerous", etc.
He had all the tests yesterday, and I was waiting for a text message to tell me what was going on, which they clearly failed to send. Bollocks. So I have to wait another 6 hours until they wake up, and then I will be told that they still don't know anything, so don't ask. What I do know is that they have a huge conference with the doctors today, so we had better bloody know something at that point.
I do quite fancy Paris at Christmas, though.
He had all the tests yesterday, and I was waiting for a text message to tell me what was going on, which they clearly failed to send. Bollocks. So I have to wait another 6 hours until they wake up, and then I will be told that they still don't know anything, so don't ask. What I do know is that they have a huge conference with the doctors today, so we had better bloody know something at that point.
I do quite fancy Paris at Christmas, though.
Friday, 27 November 2009
Is it only the 27th? When's December already?!
So this post is mostly about waiting. Again. Thrilling, I know. Ended up flying back into London a little bit early for personal reasons, so now I am waiting in London on my own. Which makes things feel both normal and bizarre, seeing that I am out of the loop. It scares me how much out of the loop a person can be, as illustrated by my brother last night. We were chatting and he said, "I don't know where I need to pack for or where I will be next week. After all, they could say that he's doing really well and to come back in a month for more chemo and then he will just bugger off to thailand". Stunned, I said "Um, no, there is less than an iota of a chance that Thailand is anywhere in the realm of possibility". It's weird, because he knows much more about stuff like the Whipple Procedure (the surgery that is sometimes done on pancreatic tumours) but didn't seem to realise that if you leave this tumour alone for a month, it could treble in size and kill my father.
My grandmother is recovering from her back injury and her life is almost back to normal. However, we have a new war injury, namely my mother, who fell off the pavement and hit her head and wrist. She needed stitches in her forehead and is wearing a sling. God knows if it's broken, but she will get it checked out in Houston. I feel irrationally guilty, as if, if I had been there, this would not have happened. I don't need to be told it's not my fault, but sometimes you feel it anyway.
The reason updates have been thin on the ground is that nothing much has happened. We are all just waiting. It's been almost two weeks since my dad's last chemo. He is feeling good enough to walk to work (I walked with him and it takes about 40 mins) and stay at work all day. He also felt well enough to travel, alone, to an overnight meeting in Bucharest and came back tired but chirpy. It's all too good to be true. I feel like we are setting ourselves up for a fall, because it can't possibly be SO GOOD. I am worried that, come the 1st December, we will find out that the cancer has spread everywhere and that he may feel well, but he has 2 months, tops.
I know he has had the best possible care (most of the time) but, after all, he was staged as 4, and that's not a funny staging. It would be insane to allow yourself to believe that just the chemo has done the trick, right? Chemo doesn't do that with the pancreas. But maybe I have heard just the horror stories. However, in the UK in 2005, there were 7,632 cases of Pancreatic Cancer. There were also 7,288 deaths from Pancreatic Cancer. And my father is flying off to Romania. What? I mean, WHAT?!
My grandmother is recovering from her back injury and her life is almost back to normal. However, we have a new war injury, namely my mother, who fell off the pavement and hit her head and wrist. She needed stitches in her forehead and is wearing a sling. God knows if it's broken, but she will get it checked out in Houston. I feel irrationally guilty, as if, if I had been there, this would not have happened. I don't need to be told it's not my fault, but sometimes you feel it anyway.
The reason updates have been thin on the ground is that nothing much has happened. We are all just waiting. It's been almost two weeks since my dad's last chemo. He is feeling good enough to walk to work (I walked with him and it takes about 40 mins) and stay at work all day. He also felt well enough to travel, alone, to an overnight meeting in Bucharest and came back tired but chirpy. It's all too good to be true. I feel like we are setting ourselves up for a fall, because it can't possibly be SO GOOD. I am worried that, come the 1st December, we will find out that the cancer has spread everywhere and that he may feel well, but he has 2 months, tops.
I know he has had the best possible care (most of the time) but, after all, he was staged as 4, and that's not a funny staging. It would be insane to allow yourself to believe that just the chemo has done the trick, right? Chemo doesn't do that with the pancreas. But maybe I have heard just the horror stories. However, in the UK in 2005, there were 7,632 cases of Pancreatic Cancer. There were also 7,288 deaths from Pancreatic Cancer. And my father is flying off to Romania. What? I mean, WHAT?!
Monday, 23 November 2009
Sharing the Caring
I left Israel with my parents yesterday. They had been there for 6 weeks, which is a very long time for them. And it was more emotional than anyone expected, especially when it came to my grandmother.
So I was left with a really crappy decision which did not occur to me until 12 hours before we left. It goes something like this:
I have dedicated this time to spending with my parents, supporting my mother and seeing my father. However, my grandmother has done her back in, is in pain and has been having all that other trouble. She is also very fragile and upset about my father, as she fears the worst all the time. Consequently, she causes my parents to worry, especially my mother, who feels like she wants to be looking after them both, but can't. So she feels guilty.
On the other hand, my grandmother seems to be fine getting on with her life. She has millions of friends, an enviable social life and, apart from the fact that she doesn't have a proper doctor, is sorted whether we are there or not. In fact, when I was there last time, she wasn't doing all the things that she wanted to because she felt as though she had to "entertain" me. Also, hopefully her back will be better in a couple of days.
In short, when my grandmother left our house and I drove her home, she started crying and did not stop for a long time. My mother, at the same time, also cried, for the fact that she is only one person and can't take care of everyone at once. So I suddenly started considering staying in Israel to look after my Gran, despite the fact that I much prefer being with my father and in the loop.
Eventually, I decided to go, just out of ease, because changing all the flights AGAIN would have been a pain in the arse. But maybe I should have stayed for her.
In the meanwhile, the optimism around here is overwhelming. My dad feels marvelous, even though he is prone to having energy crashes in the early evenings. My mother is absolutely convinced that he will be ready for surgery after the 1st December. I believe her, but am slightly worried about what will happen if the news is not good. We are getting ourselves so geared up to the next stage that we find it hard to imagine a world in which we are told to go back to chemo.
Otherwise, tensions are a bit high, as they always are. There is a strange thing going on where my father blames my mother for the cancer, which I have not gotten to the bottom of. I will let you know when I know anything more about that.
And, just in case you were wondering, we are waiting.
So I was left with a really crappy decision which did not occur to me until 12 hours before we left. It goes something like this:
I have dedicated this time to spending with my parents, supporting my mother and seeing my father. However, my grandmother has done her back in, is in pain and has been having all that other trouble. She is also very fragile and upset about my father, as she fears the worst all the time. Consequently, she causes my parents to worry, especially my mother, who feels like she wants to be looking after them both, but can't. So she feels guilty.
On the other hand, my grandmother seems to be fine getting on with her life. She has millions of friends, an enviable social life and, apart from the fact that she doesn't have a proper doctor, is sorted whether we are there or not. In fact, when I was there last time, she wasn't doing all the things that she wanted to because she felt as though she had to "entertain" me. Also, hopefully her back will be better in a couple of days.
In short, when my grandmother left our house and I drove her home, she started crying and did not stop for a long time. My mother, at the same time, also cried, for the fact that she is only one person and can't take care of everyone at once. So I suddenly started considering staying in Israel to look after my Gran, despite the fact that I much prefer being with my father and in the loop.
Eventually, I decided to go, just out of ease, because changing all the flights AGAIN would have been a pain in the arse. But maybe I should have stayed for her.
In the meanwhile, the optimism around here is overwhelming. My dad feels marvelous, even though he is prone to having energy crashes in the early evenings. My mother is absolutely convinced that he will be ready for surgery after the 1st December. I believe her, but am slightly worried about what will happen if the news is not good. We are getting ourselves so geared up to the next stage that we find it hard to imagine a world in which we are told to go back to chemo.
Otherwise, tensions are a bit high, as they always are. There is a strange thing going on where my father blames my mother for the cancer, which I have not gotten to the bottom of. I will let you know when I know anything more about that.
And, just in case you were wondering, we are waiting.
Monday, 16 November 2009
So I'm not actually in Israel
Everything has been quiet for a few days. My father had his last round of Chemo yesterday, and I believe all went well.
My mother told me that she has been trying to contact the woman who recommended us to French Surgeon. He had treated her husband and that's how the whole thing came about. There had been radio silence for a while and then my mother found out that the man had died, which was why his wife was unavailable. And apparently French Surgeon knew this when we sat with him and never mentioned it. Nice. I won't dwell on it, because the two cases are very different, but it happened. So it goes.
I was supposed to go to Israel last night, but I put off my flight because I felt sniffly in the morning. Seriously. My father's white blood cell count was down yesterday at chemo, so his immune system is feeling a bit down in the dumps. The last thing he needs is someone coughing on him. I feel much better this morning, but I have rearranged my flight for Tuesday (£30 change fee, thank you BA!)
So I am still in London.
My mother just told me that the chemotherapy madness was even worse yesterday than when I was there. Apparently, there was only one nurse on duty for scores of patients, and, because my dad's nurse was not there, this one had no idea which treatment her needed. "Is it treatment one or two?" Cue my mother calling Doctor Friend, who came down and gave her the right prescription. But my father has been given two different treatments in the past month. So one of them MUST HAVE BEEN WRONG. Great. My mother and I are both losing faith in this hospital very fast.
Also, in the 14min conversation that I had with my mother today, she said that she thinks that I am far too willing to give up my dreams for the good of other people and that I should not be doing it. She is referring to bouncing back and forth to see my dad, but doesn't only refer to that. I told her about the project I am slowly cooking up to placate her, but, as usual, at the back of my head, I hear "27%!" So I sacrifice a year to my father. So what? As far as I know, I have a few more in reserve, which he may not.
Beh. Everything will be clear on the 1st. Maybe. Or Maybe Not.
My mother told me that she has been trying to contact the woman who recommended us to French Surgeon. He had treated her husband and that's how the whole thing came about. There had been radio silence for a while and then my mother found out that the man had died, which was why his wife was unavailable. And apparently French Surgeon knew this when we sat with him and never mentioned it. Nice. I won't dwell on it, because the two cases are very different, but it happened. So it goes.
I was supposed to go to Israel last night, but I put off my flight because I felt sniffly in the morning. Seriously. My father's white blood cell count was down yesterday at chemo, so his immune system is feeling a bit down in the dumps. The last thing he needs is someone coughing on him. I feel much better this morning, but I have rearranged my flight for Tuesday (£30 change fee, thank you BA!)
So I am still in London.
My mother just told me that the chemotherapy madness was even worse yesterday than when I was there. Apparently, there was only one nurse on duty for scores of patients, and, because my dad's nurse was not there, this one had no idea which treatment her needed. "Is it treatment one or two?" Cue my mother calling Doctor Friend, who came down and gave her the right prescription. But my father has been given two different treatments in the past month. So one of them MUST HAVE BEEN WRONG. Great. My mother and I are both losing faith in this hospital very fast.
Also, in the 14min conversation that I had with my mother today, she said that she thinks that I am far too willing to give up my dreams for the good of other people and that I should not be doing it. She is referring to bouncing back and forth to see my dad, but doesn't only refer to that. I told her about the project I am slowly cooking up to placate her, but, as usual, at the back of my head, I hear "27%!" So I sacrifice a year to my father. So what? As far as I know, I have a few more in reserve, which he may not.
Beh. Everything will be clear on the 1st. Maybe. Or Maybe Not.
Tuesday, 10 November 2009
"And by a sleep to say we end the heart-ache"
I dreamt that I had my very own support group at a hospital where my dad was having treatment. These are either the people I would want around me, or I have been watching too much television. My lovely group were diverse and supportive, also having family battling cancer.
There was Tom, the kind gay boy, Jack, the funny, stoic guy, a lovely, shy black girl that I didn't get a name for in the dream, and some other people. It wasn't a "sit around and swap sob stories until you reach catharsis" group. It was more of a "hook up, have coffee, and talk rubbish" group.
So that was nice. And also a dream. My brain likes dreaming about chemotherapy recently. I find myself in hospitals a lot. My father is still about 5 days off his next round, and I have gone back to London, so god knows where my head is.
I am trying to get back to work. What I mean is that I am tentatively beginning to plan things, make things happen, in the full knowledge that I may have to cancel them, but caring less. I would like to be able to apply for jobs in February or March, just because I figure something will have to have happened by then. this is a total fallacy, but my brain is unwilling to accept a future where everything is still misty in 4 months. So I have picked a date out of the air. We shall see if I am right.
The 1st December draws nearer. I am loathe to believe that our entire futures hang on the balance of this one day, or one set of tests. Because I have seen how these kinds of expectations have gone so far: "We will know much more once we have a diagnosis." "We will know much more once we know if these are other growths". "We will know much more once we know if it is genetic". It's all bullshit. We are never any wiser about what the future holds, so I am not going to pin my hopes on this time. It's just common sense.
There was Tom, the kind gay boy, Jack, the funny, stoic guy, a lovely, shy black girl that I didn't get a name for in the dream, and some other people. It wasn't a "sit around and swap sob stories until you reach catharsis" group. It was more of a "hook up, have coffee, and talk rubbish" group.
So that was nice. And also a dream. My brain likes dreaming about chemotherapy recently. I find myself in hospitals a lot. My father is still about 5 days off his next round, and I have gone back to London, so god knows where my head is.
I am trying to get back to work. What I mean is that I am tentatively beginning to plan things, make things happen, in the full knowledge that I may have to cancel them, but caring less. I would like to be able to apply for jobs in February or March, just because I figure something will have to have happened by then. this is a total fallacy, but my brain is unwilling to accept a future where everything is still misty in 4 months. So I have picked a date out of the air. We shall see if I am right.
The 1st December draws nearer. I am loathe to believe that our entire futures hang on the balance of this one day, or one set of tests. Because I have seen how these kinds of expectations have gone so far: "We will know much more once we have a diagnosis." "We will know much more once we know if these are other growths". "We will know much more once we know if it is genetic". It's all bullshit. We are never any wiser about what the future holds, so I am not going to pin my hopes on this time. It's just common sense.
Sunday, 8 November 2009
"Cut me open, Doc"
We went to see a surgeon yesterday, who shall be henceforth known as French Surgeon. He is French. He said that he would be more than willing to operate on my father's tumour, providing that on the 1st of December the tests show that the spot on his liver has either shrunk or not done anything. So, we are praying. The selfish bit of me quite fancies spending the second week of December in Paris!
However, he also says that there is no point in operating on it if the tumour keeps metastisising ("spreading", for us laypeople). It will not prolong his life and would be pointless.
For one optimistic and completely unrealistic moment, I thought, "well, that means that in December or January he can have the surgery. Potentially French Surgeon will get it all out and then our lives will be back to normal. How weird would that be?" Then my mother reminded me that he would have at least 6 months of further post-operative treatment, even in the best possible case.
Ah, whatever. I am fed up of not looking towards any future at all. So even if I make them up, I feel that I am entitled to, as no one can possibly tell me that I am mistaken.
London tomorrow.
As a side note, I have been reading some blogs of people I barely know and am currently feeling better about the rubbish I post on here. At least my grammar is up to scratch!
However, he also says that there is no point in operating on it if the tumour keeps metastisising ("spreading", for us laypeople). It will not prolong his life and would be pointless.
For one optimistic and completely unrealistic moment, I thought, "well, that means that in December or January he can have the surgery. Potentially French Surgeon will get it all out and then our lives will be back to normal. How weird would that be?" Then my mother reminded me that he would have at least 6 months of further post-operative treatment, even in the best possible case.
Ah, whatever. I am fed up of not looking towards any future at all. So even if I make them up, I feel that I am entitled to, as no one can possibly tell me that I am mistaken.
London tomorrow.
As a side note, I have been reading some blogs of people I barely know and am currently feeling better about the rubbish I post on here. At least my grammar is up to scratch!
Thursday, 29 October 2009
Out of touch
Being in London has one big drawback. I get updates once a day about how my parents are doing and I consequently feel guilty about not being there. That's not to say that anything is wrong, but so much goes on when I am there that I know that I am not getting all the news.
However, what I do know is that Evil Dissenting Doctor never got back to my mother, despite the fact that she was calling and emailing him every day. She finally managed to get a hold of him to ask him the important question of what to do about my father's blood sugar levels. My father has been on a low sugar diet for a very long time, as he has been trying to keep diabetes at bay. Now, with the new, low fat diet, his sugar levels have gone through the roof. Which is bad. So my mother rang to ask what to do. He said "ask your GP". She said "We don't have a GP here". He said "Oh, we must fix you up with one". My mother went ape-shit, seeing as she does not want a GP to give her advice when a GP would in no way be a pancreatic cancer specialist. So the ongoing Israel experience is not a good one.
Problem is, of course, that if my parents go back to Houston for the superior healthcare, they will lose the social network that they have in Israel. My mother also says that the guests have been coming far less this week, which is silly as this week my father is feeling better. In the first week after chemo, my father is supposed to feel like crap. In the second week, not so much.
Personally, I think I am pro them going back to Houston. It would only be a month now (slightly less even) and the care would be much better. But it's not up to me, as much as I can make my views heard. Also, I am worried about giving out opinions, because I know that these are things that my parents get quite enough of without me adding my voice to the hubbub.
Otherwise, nothing to report. I am keeping busy but I am almost waiting to go back to Israel to know what is going on. Gah.
However, what I do know is that Evil Dissenting Doctor never got back to my mother, despite the fact that she was calling and emailing him every day. She finally managed to get a hold of him to ask him the important question of what to do about my father's blood sugar levels. My father has been on a low sugar diet for a very long time, as he has been trying to keep diabetes at bay. Now, with the new, low fat diet, his sugar levels have gone through the roof. Which is bad. So my mother rang to ask what to do. He said "ask your GP". She said "We don't have a GP here". He said "Oh, we must fix you up with one". My mother went ape-shit, seeing as she does not want a GP to give her advice when a GP would in no way be a pancreatic cancer specialist. So the ongoing Israel experience is not a good one.
Problem is, of course, that if my parents go back to Houston for the superior healthcare, they will lose the social network that they have in Israel. My mother also says that the guests have been coming far less this week, which is silly as this week my father is feeling better. In the first week after chemo, my father is supposed to feel like crap. In the second week, not so much.
Personally, I think I am pro them going back to Houston. It would only be a month now (slightly less even) and the care would be much better. But it's not up to me, as much as I can make my views heard. Also, I am worried about giving out opinions, because I know that these are things that my parents get quite enough of without me adding my voice to the hubbub.
Otherwise, nothing to report. I am keeping busy but I am almost waiting to go back to Israel to know what is going on. Gah.
Tuesday, 27 October 2009
Oh Hai. I iz in London, feeling ur rain
So I flew back to London yesterday.
My mother told me, before I left, that I should be talking to my brothers and spending more time with them. This is a lovely idea, but not helpful, seeing as they are both halfway across the world. On the 6th of November, one will be in Israel for a few days, and we are all planning to meet in Geneva for "Thanksgiving" (which is what we will call the time that all the Americans seem to be taking time off at). So, just to make it absolutely clear, the planned dates for the coming months are:
2nd November: fly back to Israel
9th November: Back to London
16h November: Back in Israel
22nd November: Back in London
27/28th November: Geneva possibly
30/1st December: Houston for the tests possibly
8th December: Back in London, entirely dependent on what the doctors say
I am finding it utterly impossible to keep to any kind of weight-loss plan while I am jumping from place to place. This may sound trite, but so long as I am only a week in any place, I psychologically feel like I am on holiday, in a weird way. This must stop. Diet and exercise start now!
I have a smear test booked for Friday. I know, too much information. But the woman on the phone was very reluctant to give me an appointment. So I played the Cancer Card. I have not been doing that so far, although my father is happy to. He was taking out his crappy mood on my mother the other day and when she asked him to stop he said, "I have cancer. I will do what I like". She responded with, "I don't care what you have. If you treat me like this, I will kill you myself." Point.
In the meanwhile, my father is being as irreverent about the Cancer as I tend to be in this blog, which makes me feel like we are on the same page about some things. It drives my grandmother crazy when my father starts making jokes about death, pain or anything cancerous at all. To which he responds, "It's my cancer and I will say what I like about it". So the Cancer Card can work both ways.
Having left the country, I am no longer in such close contact with my parents. Of course I talk to them at least twice a day, but it's not the same as getting the inside info on how they are coping. And I think it's hard right now.
I have been worrying about whether having a disabled partner and dealing with medical matters, pain, fatigue and drugs every day has somehow made me jaded or cynical to what others are going through. Sometimes, instead of sympathising with what my mother goes through with the doctors and so forth, I think "yes, I know, I have been doing this for years!" She does get very stressed, which does not do her any favours. Of course, my partner does not have a diagnosis which may prove fatal, but I think that what my mother hasn't figured out yet is that, as well as my father having a life-threatening condition, it's also a chronic one. If she tries to keep up the pace she is at for a long time, she will burn out. I think she knows this, but can't switch off the panic. And a very small part of me, I am ashamed to say, thinks "na ni na ni boo boo, I have been doing this for years and you have always only looked down on me for it. Now it's your turn." God, that's terrible schadenfreude. But now it's out there and I can move on.
In other news, my grandmother had her 80th birthday on Sunday night. The enormous plan to take her to Florence had to be aborted because of my father's diagnosis, so we had a small dinner in her honour. Everyone got into the mood, which surprised me, given the circumstances, although my father did cry a little bit. Facing one's mortality every day sucks.
I gave my grandmother a photo album of pictures that my father has taken of us over the years. She has not been able to see the pictures since my father went digital in 2003 or so, so I thought she would like it. And the unspoken reason, which I think everyone knows but no one talks about, is that, if my father doesn't make it, she will have something to look at to remind her of him.
Anyhoo, this has got a bit heavy, so I will go back to drinking my coffee and wondering why I was up at 4am. Jet-lag, yes, but I believe I was dreaming about my dad castigating me about something. Why can't he just be satisfied? :-)
My mother told me, before I left, that I should be talking to my brothers and spending more time with them. This is a lovely idea, but not helpful, seeing as they are both halfway across the world. On the 6th of November, one will be in Israel for a few days, and we are all planning to meet in Geneva for "Thanksgiving" (which is what we will call the time that all the Americans seem to be taking time off at). So, just to make it absolutely clear, the planned dates for the coming months are:
2nd November: fly back to Israel
9th November: Back to London
16h November: Back in Israel
22nd November: Back in London
27/28th November: Geneva possibly
30/1st December: Houston for the tests possibly
8th December: Back in London, entirely dependent on what the doctors say
I am finding it utterly impossible to keep to any kind of weight-loss plan while I am jumping from place to place. This may sound trite, but so long as I am only a week in any place, I psychologically feel like I am on holiday, in a weird way. This must stop. Diet and exercise start now!
I have a smear test booked for Friday. I know, too much information. But the woman on the phone was very reluctant to give me an appointment. So I played the Cancer Card. I have not been doing that so far, although my father is happy to. He was taking out his crappy mood on my mother the other day and when she asked him to stop he said, "I have cancer. I will do what I like". She responded with, "I don't care what you have. If you treat me like this, I will kill you myself." Point.
In the meanwhile, my father is being as irreverent about the Cancer as I tend to be in this blog, which makes me feel like we are on the same page about some things. It drives my grandmother crazy when my father starts making jokes about death, pain or anything cancerous at all. To which he responds, "It's my cancer and I will say what I like about it". So the Cancer Card can work both ways.
Having left the country, I am no longer in such close contact with my parents. Of course I talk to them at least twice a day, but it's not the same as getting the inside info on how they are coping. And I think it's hard right now.
I have been worrying about whether having a disabled partner and dealing with medical matters, pain, fatigue and drugs every day has somehow made me jaded or cynical to what others are going through. Sometimes, instead of sympathising with what my mother goes through with the doctors and so forth, I think "yes, I know, I have been doing this for years!" She does get very stressed, which does not do her any favours. Of course, my partner does not have a diagnosis which may prove fatal, but I think that what my mother hasn't figured out yet is that, as well as my father having a life-threatening condition, it's also a chronic one. If she tries to keep up the pace she is at for a long time, she will burn out. I think she knows this, but can't switch off the panic. And a very small part of me, I am ashamed to say, thinks "na ni na ni boo boo, I have been doing this for years and you have always only looked down on me for it. Now it's your turn." God, that's terrible schadenfreude. But now it's out there and I can move on.
In other news, my grandmother had her 80th birthday on Sunday night. The enormous plan to take her to Florence had to be aborted because of my father's diagnosis, so we had a small dinner in her honour. Everyone got into the mood, which surprised me, given the circumstances, although my father did cry a little bit. Facing one's mortality every day sucks.
I gave my grandmother a photo album of pictures that my father has taken of us over the years. She has not been able to see the pictures since my father went digital in 2003 or so, so I thought she would like it. And the unspoken reason, which I think everyone knows but no one talks about, is that, if my father doesn't make it, she will have something to look at to remind her of him.
Anyhoo, this has got a bit heavy, so I will go back to drinking my coffee and wondering why I was up at 4am. Jet-lag, yes, but I believe I was dreaming about my dad castigating me about something. Why can't he just be satisfied? :-)
Friday, 23 October 2009
This is Grand Central Station. Alight here for Cancerville
Dear God. They just keep coming. They come at all hours of the day and night, unannounced and expecting to be seen and talked to. The phone has not stopped ringing between the hours of 7am and 11pm for about 5 days, and even on the off-peak hours it's not guaranteed that we will have quiet. Do you think I can pay people to go away?
I have been told that I have to come and make nice. These people happen to be distant relatives, but still, I didn't invite them, so why do I have to be sociable? I don't like people, ok? Or, at least, if I do, I like them on my terms.
So I went upstairs, put some shoes on and did my hair. I am now more dressed up than I am for work. Then I get aggro from my father because people have turned up again who we weren't expecting. Yes, that's my fault, apparently.
But before this becomes too teenage angst-y, let's talk medicine.
Lovely Doctor who flew with me out of Houston has been calling almost every day. He rang today to say that, having thought about it, he is of the opinion that Evil Dissenting Doctor is wrong and was giving advice out of misinformation. Even though he is a pulmonary oncologist and not a pancreatic one, he has seen all the documentation on my father's case, which Dissenting Doctor apparently did not. Fine.
I am still of the opinion that we have a case of too many cooks here and that they are all simply depressing and confusing my father. Who, by the way, is very chirpy, even without the legal weed that they told him he could have. Seriously, they are going to come to our house and roll him marijuana, on doctor's orders. And it's the good stuff too, they say.
In any case, I am feeling a bit put out, because I didn't sign up to look after all of my father's friends. It's as if they need emotional support. They turn up and shake their heads and thank god it's not them. But that's the cynic in me. So long as it helps him, I will serve coffee. In fact, I will serve 20 cups of coffee an hour, I will wash the dishes, I will clean the house top to bottom and be general slave labour so long as I don't have to sit and smile.
So what do I do instead? I bring up the Stamford Prison Experiment of 1971 and kill the conversation. Hopefully my parents will get the gist and send me upstairs to the computer. He he. Evil me.
I would like to take a poll. I wonder how I do that... ah ha!
So yes, I am making this interactive now. Like Choose Your Own Storybook, only Choose Your Own Blog. Kinda.
Good luck!
I have been told that I have to come and make nice. These people happen to be distant relatives, but still, I didn't invite them, so why do I have to be sociable? I don't like people, ok? Or, at least, if I do, I like them on my terms.
So I went upstairs, put some shoes on and did my hair. I am now more dressed up than I am for work. Then I get aggro from my father because people have turned up again who we weren't expecting. Yes, that's my fault, apparently.
But before this becomes too teenage angst-y, let's talk medicine.
Lovely Doctor who flew with me out of Houston has been calling almost every day. He rang today to say that, having thought about it, he is of the opinion that Evil Dissenting Doctor is wrong and was giving advice out of misinformation. Even though he is a pulmonary oncologist and not a pancreatic one, he has seen all the documentation on my father's case, which Dissenting Doctor apparently did not. Fine.
I am still of the opinion that we have a case of too many cooks here and that they are all simply depressing and confusing my father. Who, by the way, is very chirpy, even without the legal weed that they told him he could have. Seriously, they are going to come to our house and roll him marijuana, on doctor's orders. And it's the good stuff too, they say.
In any case, I am feeling a bit put out, because I didn't sign up to look after all of my father's friends. It's as if they need emotional support. They turn up and shake their heads and thank god it's not them. But that's the cynic in me. So long as it helps him, I will serve coffee. In fact, I will serve 20 cups of coffee an hour, I will wash the dishes, I will clean the house top to bottom and be general slave labour so long as I don't have to sit and smile.
So what do I do instead? I bring up the Stamford Prison Experiment of 1971 and kill the conversation. Hopefully my parents will get the gist and send me upstairs to the computer. He he. Evil me.
I would like to take a poll. I wonder how I do that... ah ha!
Would you rather hear more medical stuff, or more emotional rantage?
So yes, I am making this interactive now. Like Choose Your Own Storybook, only Choose Your Own Blog. Kinda.
Good luck!
Tuesday, 13 October 2009
"There is a difference between what you want and what your parents want"
So, my uncle randomly turned up in London yesterday. He was here for a meeting, which I did not know about and rang me up to ask me to meet him for coffee. I have not spoken to this man one-on-one for more than 5 minutes at a time in my life, so the prospect was fairly daunting. After trekking up and down Tottenham Court Rd for a while, we ended up in Starbucks (by the way, British Society, you were not doing yourself any favours yesterday, as the customer service everywhere we went was appalling. I was quite ashamed of the city that I call home) and sat down to talk about nothing.
Eventually the conversation turned to the upcoming trip and my parents arriving in Israel (which they did yesterday, how nice of you to ask! ;-) ) and he started saying some slightly odd things. He was wondering how come I was going to Israel when my brothers are not, why I am so adamant to stay and have I asked my parents what they want from me. Suddenly, and without warning, I thought "Holy shit. Has he been told something that I haven't? What if they don't want me there? What if I am just going to be a burden and my mother thinks she will have to cook for me and do my laundry and generally look after me, as well as after my father? Gah!"
So I rang home and called my mum. She said, "Don't be so silly. We not only want you. We need you. For instance, I can't leave the house to get a pint of milk if there is no one to look after your dad. We are counting the days until you get here" (Obviously, this was all in Hebrew, but you get the gist).
So I'm rather chuffed. The title of the post refers to something my uncle said, which suggested that I was going to be with them out of a selfish need to see my father, when he didn't necessarily want me there. So nah to that! Apparently it is unimaginable that a daughter could take time out of her life to be with her sick father.
I told my uncle the following: Let's pretend that there are two options. One option is that I run off to Israel and take 6 months out of my life, only to have him fully recover and I am left feeling like a bit of a ninny. Fine. Option two is that I don't. I decide that everything is fine, I stay in London, get on with things and, 9 months down the line my father is dead and I spend the rest of my life regretting the time with him that I will never get back. I know which option I choose, selfish or otherwise.
And this brings me on to my next point. My uncle kept talking about the circumstances in which my father is dead. People have been intentionally avoiding this, which includes everyone from my immediate family to random acquaintances. So, just to put it out there and thus confront the fear: Dead. Death. Dying. Terminal. My father may die. The chance is pretty damn high.
Phew. Do I feel better? No, not really. But if I need any justification as to why I am doing any of what I doing, let's go with that. And furthermore, let's go back to the start. 27 Percent. It's the 73 percent that is driving me right now. And everything else is bullshit.
Eventually the conversation turned to the upcoming trip and my parents arriving in Israel (which they did yesterday, how nice of you to ask! ;-) ) and he started saying some slightly odd things. He was wondering how come I was going to Israel when my brothers are not, why I am so adamant to stay and have I asked my parents what they want from me. Suddenly, and without warning, I thought "Holy shit. Has he been told something that I haven't? What if they don't want me there? What if I am just going to be a burden and my mother thinks she will have to cook for me and do my laundry and generally look after me, as well as after my father? Gah!"
So I rang home and called my mum. She said, "Don't be so silly. We not only want you. We need you. For instance, I can't leave the house to get a pint of milk if there is no one to look after your dad. We are counting the days until you get here" (Obviously, this was all in Hebrew, but you get the gist).
So I'm rather chuffed. The title of the post refers to something my uncle said, which suggested that I was going to be with them out of a selfish need to see my father, when he didn't necessarily want me there. So nah to that! Apparently it is unimaginable that a daughter could take time out of her life to be with her sick father.
I told my uncle the following: Let's pretend that there are two options. One option is that I run off to Israel and take 6 months out of my life, only to have him fully recover and I am left feeling like a bit of a ninny. Fine. Option two is that I don't. I decide that everything is fine, I stay in London, get on with things and, 9 months down the line my father is dead and I spend the rest of my life regretting the time with him that I will never get back. I know which option I choose, selfish or otherwise.
And this brings me on to my next point. My uncle kept talking about the circumstances in which my father is dead. People have been intentionally avoiding this, which includes everyone from my immediate family to random acquaintances. So, just to put it out there and thus confront the fear: Dead. Death. Dying. Terminal. My father may die. The chance is pretty damn high.
Phew. Do I feel better? No, not really. But if I need any justification as to why I am doing any of what I doing, let's go with that. And furthermore, let's go back to the start. 27 Percent. It's the 73 percent that is driving me right now. And everything else is bullshit.
Monday, 12 October 2009
Gearing up to going back in
My father feels ill. Well, duh. On Saturday he had chemo, but what is really making him feel shitty is the operation he had on Thursday to sort out his stent. It's basically like having a big piece of metal stuck up your pancreas. So I can sympathise.
The doctors didn't give him enough drugs right after the surgery, so my mother was ringing all and sundry to try to get him some decent, morphine-based medication. In the meanwhile, they were supposed to fly out of Houston yesterday and do a stopover in Geneva. However, my father was not feeling well enough at the time, so they stayed and extra day and have scrapped the stop-over. They will be in Israel this afternoon. I should probably return my grandmother's call. But it's freakishly restful being out here doing nothing.
I am going back into the eye of the storm on Friday. Speaking to my brother, I got the impression that my father does not want him in Israel. I worry that I am wedging myself in where I am not needed or wanted, and wonder how far I should go with what I want without becoming a truly selfish being. When speaking to my father on the phone yesterday, I mentioned that I wanted to talk to him, when I saw him, about the dates for my future comings and goings. He sighed. It's too much effort for him to talk about booking flights, so how can I expect him to talk about anything of substance, which we will have to be discussing at some point. Note to self. Bring a notebook and pen, in case he has enough energy. If it's not too macabre, I might take my video camera.
In the meanwhile, I have had a steady stream of visitors and visits. I am still lining them up for before I go, but I will be back about a week on Friday, so let me know if you would like to meet up.
Just a small, really selfish rant, before I go to M&S to buy more shirts for my dad: Why is it that all the good jobs come up when I can't apply for them. I have had to ban myself from looking at the job pages, because it's too depressing that I can't do any of them. "starting now", "starting next week", "starting 28th October". Gah! I will just have to be amazingly productive all on my own, with nothing that needs to be done longterm, or in direct contact with other people. Now would be a really good time to start that novel...
The doctors didn't give him enough drugs right after the surgery, so my mother was ringing all and sundry to try to get him some decent, morphine-based medication. In the meanwhile, they were supposed to fly out of Houston yesterday and do a stopover in Geneva. However, my father was not feeling well enough at the time, so they stayed and extra day and have scrapped the stop-over. They will be in Israel this afternoon. I should probably return my grandmother's call. But it's freakishly restful being out here doing nothing.
I am going back into the eye of the storm on Friday. Speaking to my brother, I got the impression that my father does not want him in Israel. I worry that I am wedging myself in where I am not needed or wanted, and wonder how far I should go with what I want without becoming a truly selfish being. When speaking to my father on the phone yesterday, I mentioned that I wanted to talk to him, when I saw him, about the dates for my future comings and goings. He sighed. It's too much effort for him to talk about booking flights, so how can I expect him to talk about anything of substance, which we will have to be discussing at some point. Note to self. Bring a notebook and pen, in case he has enough energy. If it's not too macabre, I might take my video camera.
In the meanwhile, I have had a steady stream of visitors and visits. I am still lining them up for before I go, but I will be back about a week on Friday, so let me know if you would like to meet up.
Just a small, really selfish rant, before I go to M&S to buy more shirts for my dad: Why is it that all the good jobs come up when I can't apply for them. I have had to ban myself from looking at the job pages, because it's too depressing that I can't do any of them. "starting now", "starting next week", "starting 28th October". Gah! I will just have to be amazingly productive all on my own, with nothing that needs to be done longterm, or in direct contact with other people. Now would be a really good time to start that novel...
Thursday, 8 October 2009
Someone else's story
Still not much to report. Father has gone back to work (apparently. Although I am pretty sure the medical advice says that he probably shouldn't). He is getting his stent removed today, the little valve-opening device that keeps his pancreas functioning. This is a leftover from the days when they thought he had pancreatitis. It's working fine, but they are replacing it because the chemotherapy is going to block it off completely unless it's made of hardier material.
After all the other things that he's been through, it feels like a walk in the park, even though he is still going to be anaesthetised and it still may take a couple of hours of surgery. It's strange how your perspective on things change with the situation. Under epistemology, I would call it contextualism, but I would lose all my readers, so I won't!
Still in London. Very easy to pretend that things are normal when I am here. In one way, it's nice and comforting and it's the least stressed that I have been in a good long time. On the other hand, I wonder whether I should be feeling normal. You can very normally shut your eyes and go through life blind to the triumph and tragedy of it all. Yes, you can ignore it, and we say ignorance is bliss. I am not suggesting this is a good way to go, but as a thought experiment: What if I avoided it all? Whatever happens happens, and I don't want to be in the loop, I don't want to be told whether things are better or worse. If they work out, great, and if they don't, I don't need to know.
Clearly that would not work on a practical level, but what about the emotional one? Let's pretend that it was not my father who was ill, but some beloved film star. Let's call him Patrick Swayze. If I truly care about his fate, is it healthier to follow his progress determinedly and to know the instant something happened, or is it better to not know the circumstances of his death and live happily in the belief that he's fine somewhere?
For now, I will say, all other considerations aside, it's the "sadder-but-wiser girl for me". And the thought experiment does not work anyway, because he's my father and the criteria are different.
Meh. Dawn is breaking. And waiting.
After all the other things that he's been through, it feels like a walk in the park, even though he is still going to be anaesthetised and it still may take a couple of hours of surgery. It's strange how your perspective on things change with the situation. Under epistemology, I would call it contextualism, but I would lose all my readers, so I won't!
Still in London. Very easy to pretend that things are normal when I am here. In one way, it's nice and comforting and it's the least stressed that I have been in a good long time. On the other hand, I wonder whether I should be feeling normal. You can very normally shut your eyes and go through life blind to the triumph and tragedy of it all. Yes, you can ignore it, and we say ignorance is bliss. I am not suggesting this is a good way to go, but as a thought experiment: What if I avoided it all? Whatever happens happens, and I don't want to be in the loop, I don't want to be told whether things are better or worse. If they work out, great, and if they don't, I don't need to know.
Clearly that would not work on a practical level, but what about the emotional one? Let's pretend that it was not my father who was ill, but some beloved film star. Let's call him Patrick Swayze. If I truly care about his fate, is it healthier to follow his progress determinedly and to know the instant something happened, or is it better to not know the circumstances of his death and live happily in the belief that he's fine somewhere?
For now, I will say, all other considerations aside, it's the "sadder-but-wiser girl for me". And the thought experiment does not work anyway, because he's my father and the criteria are different.
Meh. Dawn is breaking. And waiting.
Sunday, 4 October 2009
Staying on my father's side of the fence
A Dream: I am wandering the halls at MD Anderson, waiting for a very important appointment with a doctor. Only problem is that I am late and I don't have any of the paperwork, so I don't even know his name. All I know is that it's in zone F and that it's at 11:14am. So I'm trying to find it and people keep sending me to the wrong places. Eventually, I look at the map and see it on the other side of the hospital. So I make my way down there where an extremely bored receptionist tells me to take a seat. And, as far as I know, I'm still sitting there.
I woke up in London, which feels very strange because nothing is feeling like home at the moment, and I don't know why. I'm not sleep deprived (I don't think) and the view out of the window has been familiar to me for the past 5 months. Strange. Too many airports, that's what I am going to put it down to.
My father had his first chemo appointment yesterday and was feeling fine in the afternoon. The doctors say that he will only feel crappy after about a day. They will arrive in Israel at the end of next week, which, once again, leaves me with the eternal question: When do I go to be with them? There are many things that I want to do while I'm here (not least of which is getting a smear test, which I have been putting off), so maybe rushing off is not a good plan. Then again, we are time dependent, all of us, and the clock is ticking very loudly inside me at the moment.
I notice that the last post I wrote seemed rather self-obsessed and a bit too focused on my largely insignificant problems. These things may or may not come to pass, and, as much as I worry about them, they are not my focus right now. So I ask you to forgive me. My mood varies from minute to minute, and, when I wrote that, I was feeling cynical but quite mischievous. Today seems more and less real in different ways and I am hoping to do something concrete to pass the time.
To close that chapter, for the time being, we are waiting again, for the genetic test to come back from my father. He took it on Thursday, so we won't know anything until the 15th. So I am going to calm the fuck down and focus on him.
Nothing else to be done.
I woke up in London, which feels very strange because nothing is feeling like home at the moment, and I don't know why. I'm not sleep deprived (I don't think) and the view out of the window has been familiar to me for the past 5 months. Strange. Too many airports, that's what I am going to put it down to.
My father had his first chemo appointment yesterday and was feeling fine in the afternoon. The doctors say that he will only feel crappy after about a day. They will arrive in Israel at the end of next week, which, once again, leaves me with the eternal question: When do I go to be with them? There are many things that I want to do while I'm here (not least of which is getting a smear test, which I have been putting off), so maybe rushing off is not a good plan. Then again, we are time dependent, all of us, and the clock is ticking very loudly inside me at the moment.
I notice that the last post I wrote seemed rather self-obsessed and a bit too focused on my largely insignificant problems. These things may or may not come to pass, and, as much as I worry about them, they are not my focus right now. So I ask you to forgive me. My mood varies from minute to minute, and, when I wrote that, I was feeling cynical but quite mischievous. Today seems more and less real in different ways and I am hoping to do something concrete to pass the time.
To close that chapter, for the time being, we are waiting again, for the genetic test to come back from my father. He took it on Thursday, so we won't know anything until the 15th. So I am going to calm the fuck down and focus on him.
Nothing else to be done.
Wednesday, 30 September 2009
"I don't even have cancer"
My father is due to meet with the oncologist today. Last night he had another MRI. They are worried that the cancer has spread to his liver, so they just want to check that. Also, my parents are pushing for it to all be done as quickly as possible, so that there cannot be any reason that he can't start treatment as soon as possible.
In the meanwhile, he is in denial. He told my grandmother yesterday that it's all a mistake, the doctors don't know what they are on about and that they've got it wrong. This is confusing her. My mother says that it's ok to let them confuse each other. He's seems to be going through Kubler-Ross in a weird order, but that's fine. I find it all very weird.
I have been scaring myself with internet statistics today, which I am going to stop doing because it makes me want to drop everything and just spend 24/7 with him. I don't know if it's a good or a bad thing that I am thinking that there are now many things that I might have to do this year or not get to do at all. It's scary.
I have ordered my brother to call me at any hour tonight, as soon as they know what they are going to do for treatment.
Also, my grandmother has had a steady stream of visitors since the holiday ended, regardless of whether she wants them or not. I find this intrusive, especially when they are quite happy to say "even if you don't want company, I'm coming over". Great. So she needs to play the hostess and keep everyone else amused, when all she wants to do is watch TV and drink lots of tea. Also, it is beginning to feel very much like a wake, which this blatently isn't, and I am getting annoyed at the thought that people are coming to sit with her for their own selfish, albeit well-meaning, reasons.
Tired of waiting now. Please make something happen. 12 hours until we know something. In the meanwhile, I am going to my other grandparents to help build a sukkah. I have never been in Israel during these holidays. Maybe I will learn something.
In the meanwhile, he is in denial. He told my grandmother yesterday that it's all a mistake, the doctors don't know what they are on about and that they've got it wrong. This is confusing her. My mother says that it's ok to let them confuse each other. He's seems to be going through Kubler-Ross in a weird order, but that's fine. I find it all very weird.
I have been scaring myself with internet statistics today, which I am going to stop doing because it makes me want to drop everything and just spend 24/7 with him. I don't know if it's a good or a bad thing that I am thinking that there are now many things that I might have to do this year or not get to do at all. It's scary.
I have ordered my brother to call me at any hour tonight, as soon as they know what they are going to do for treatment.
Also, my grandmother has had a steady stream of visitors since the holiday ended, regardless of whether she wants them or not. I find this intrusive, especially when they are quite happy to say "even if you don't want company, I'm coming over". Great. So she needs to play the hostess and keep everyone else amused, when all she wants to do is watch TV and drink lots of tea. Also, it is beginning to feel very much like a wake, which this blatently isn't, and I am getting annoyed at the thought that people are coming to sit with her for their own selfish, albeit well-meaning, reasons.
Tired of waiting now. Please make something happen. 12 hours until we know something. In the meanwhile, I am going to my other grandparents to help build a sukkah. I have never been in Israel during these holidays. Maybe I will learn something.
Monday, 28 September 2009
Waiting in Israel
It's the Jewish day of Attonement today. All is quiet outside, with no cars, no television, although there are slews of children on bicycles riding around the empty streets.
And we are waiting. I came home to my grandmother yesterday morning, after a very long flight, feeling tired, dirty and anxious. The conversation in the car centred around me telling her the news, but, in the end, the doctor told her, while I sat beside her. He kept talking about "growths" and I have been thinking about the word "cancer" and how people don't say it as if saying it makes the tumour grow.
Because my parents aren't talking to anyone until Wednesday, we are waiting. I am about to apply for a visa waiver for my grandmother to the States, in case we are going to pack everything and go back to Houston. The tired part of me does not really want to do that.
In any case, my grandmother cried, obviously, but since then she has been utterly amazing. About 7 hours after we talked to her, she finally got to speak to my dad. She had been saying that she doesn't trust the doctors, that they have been wrong all this time and that she can't lose her son in the same way she lost her brother. Then, on the phone to my father, she said "I can feel in my heart that we are going to beat this. I just know it. And you are getting the best care in the world". And, at that moment, I thought, when I grow up, I want to be just like her. When the moment of truth came, she stepped up and consoled her son in a way only a mother can, putting all her doubts and fears aside to tell him that everything will be alright. And I love her for that more than I can possibly say. This 80 year old woman is my hero and I will be pleased if I can get through this with half as much grace and courage that she is showing.
So we are waiting. We are watching DVDs to pass the time until the television comes back on, but we have had a steady stream of guests. My dad's cousin lives nearby, and she has been with us for a good chunk of the last two days.
People sometimes think that my family is odd, because we are so closely knit and seem to be in each others affairs a lot. But now I know how to answer them. In times of crisis, it is my type of family that survives. Because we will move heaven and earth for each other and never let the support flag.
Waiting
And we are waiting. I came home to my grandmother yesterday morning, after a very long flight, feeling tired, dirty and anxious. The conversation in the car centred around me telling her the news, but, in the end, the doctor told her, while I sat beside her. He kept talking about "growths" and I have been thinking about the word "cancer" and how people don't say it as if saying it makes the tumour grow.
Because my parents aren't talking to anyone until Wednesday, we are waiting. I am about to apply for a visa waiver for my grandmother to the States, in case we are going to pack everything and go back to Houston. The tired part of me does not really want to do that.
In any case, my grandmother cried, obviously, but since then she has been utterly amazing. About 7 hours after we talked to her, she finally got to speak to my dad. She had been saying that she doesn't trust the doctors, that they have been wrong all this time and that she can't lose her son in the same way she lost her brother. Then, on the phone to my father, she said "I can feel in my heart that we are going to beat this. I just know it. And you are getting the best care in the world". And, at that moment, I thought, when I grow up, I want to be just like her. When the moment of truth came, she stepped up and consoled her son in a way only a mother can, putting all her doubts and fears aside to tell him that everything will be alright. And I love her for that more than I can possibly say. This 80 year old woman is my hero and I will be pleased if I can get through this with half as much grace and courage that she is showing.
So we are waiting. We are watching DVDs to pass the time until the television comes back on, but we have had a steady stream of guests. My dad's cousin lives nearby, and she has been with us for a good chunk of the last two days.
People sometimes think that my family is odd, because we are so closely knit and seem to be in each others affairs a lot. But now I know how to answer them. In times of crisis, it is my type of family that survives. Because we will move heaven and earth for each other and never let the support flag.
Waiting
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