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.
Showing posts with label London. Show all posts
Showing posts with label London. Show all posts
Sunday, 10 January 2010
Wednesday, 23 December 2009
Over the Hills and Far Away
Still in London. Starting to feel quite bad about it. Mostly because Littlest Brother (who would like to be known as Cellophane Brother from here on in, for reasons best known to himself) is with my parents, on his own, and having a bit of a hard time.
First, my parents are being pissy with each other because of something that happened on Chemo Day (21st). The Swiss, in their infinite wisdom, decided that a bag of chemicals that said, in large lettters "DO NOT FILTER" needed a filter. Consequently, the quite sludgy chemical got all backed up and the procedure had to be stopped while they figured out their mistake. We are not yet sure how much damage has been done, if any, but I told my dad that court hearings make some people feel better. He says "life's too short", by which he means "MY life is too short". But I think he is worried that they have wasted an entire chemo session, each of which is vital to him right now. After all, anyone can say "whoops" at an autopsy.
So they have gone to Italy, to enjoy the hot springs there (anyone seeing a pattern?). But travelling is quite stressful for my family, at the best of time, and Cellophane Brother reports that my father has taken to eating a lot of cake, or other things that my mother disapproves of. She shouts at him that he is committing suicide and he, I suspect, shouts back that it's his life and he will kill himself as he likes.
Bear in mind that I am getting all of this information second-hand, so it may not be accurate.
In the meanwhile, Cellophane Brother is in the back of the car feeling like a 10-year old whose parents are getting divorced. They can be quite intense when they are fighting. I told him that he needs infinite patience and infinite love and he has to realise that, if they shout at him and make him feel useless, it's not personal. It's just way that they are coping with a shitty situation. But I can understand why it would be hard to have to listen to, especially since it often sounds as though Love has left the building.
Funny thing is, though, that the worse it sounds as though it is, the more I want to take the next flight over and just hug them and tell them it will be ok. The more pain they are in, the more I want to ease that pain and take some of the burden from them. So yes, over the years my father has accused me of being a "nursemaid", and not in a nice way. But look who's reaping the benefits now! My mother, several weeks ago, told me that my life should not have to stop and that I should continue as normal, despite the Cancer. I protested with the same arguments that I have previously laid out here. A few days later, she turned to me and said, "you know what I said about not stopping your life? Forget it. You do exactly what you have to do and what you think is best." So, here I am. Currently nursemaiding from afar, or at least giving the temp nurse as much guidance as I can.
So, to Cellophane Brother, if you are reading this. Tips from what I have learnt in the last few weeks:
1. It is never personal. Our family shout when they get angry/frustrated/hungry/tired/confused/scared/etc. It's a coping mechanism.
2. Try and figure out what the underlying cause of the shouting is. Often, it's quite simple, like hunger. Do not talk to your father about ANYTHING when he is hungry. I recommend over breakfast, if it's something important. Once you have figure out the cause, alleviate it, if you can, or address it gently if you can't.
3. There is bound to be A LOT of existential angst kicking around. If your father wants to talk about it, let him. If he doesn't don't push it. Let him joke irreverently if he wants, but always listen.
4. Actually, that's a point all for itself. LISTEN. You will learn to judge what is going on.
5. Don't ask about their plans, if you can help it. They don't know what their plans are. Try to keep your diary free for them, but make plans, with a view to cancel if you need to. Plan and Cancel, baby, that's the phrase of the year.
6. If they are fighting, you can take sides for the sake of the most vulnerable. They should know that, even though they are hurting, there are things you can and cannot do to another person. But don't get angry. Confront them with the truth. But, in the end, comfort them both.
7. Do some really serious thinking about what the situation is like for each of them. You will be able to really help once you understand what is going on in their heads. Only then can you be their Strength.
8. Always remember that you are there to prop them up. If you need support, I would probably recommend getting it from someone other than them. Your mother told me that the siblings should be talking to each other more. She's probably right, although it's difficult across oceans.
So, in short, Unconditional Love, Endless Patience and Profound Understanding.
You'll be fine.
First, my parents are being pissy with each other because of something that happened on Chemo Day (21st). The Swiss, in their infinite wisdom, decided that a bag of chemicals that said, in large lettters "DO NOT FILTER" needed a filter. Consequently, the quite sludgy chemical got all backed up and the procedure had to be stopped while they figured out their mistake. We are not yet sure how much damage has been done, if any, but I told my dad that court hearings make some people feel better. He says "life's too short", by which he means "MY life is too short". But I think he is worried that they have wasted an entire chemo session, each of which is vital to him right now. After all, anyone can say "whoops" at an autopsy.
So they have gone to Italy, to enjoy the hot springs there (anyone seeing a pattern?). But travelling is quite stressful for my family, at the best of time, and Cellophane Brother reports that my father has taken to eating a lot of cake, or other things that my mother disapproves of. She shouts at him that he is committing suicide and he, I suspect, shouts back that it's his life and he will kill himself as he likes.
Bear in mind that I am getting all of this information second-hand, so it may not be accurate.
In the meanwhile, Cellophane Brother is in the back of the car feeling like a 10-year old whose parents are getting divorced. They can be quite intense when they are fighting. I told him that he needs infinite patience and infinite love and he has to realise that, if they shout at him and make him feel useless, it's not personal. It's just way that they are coping with a shitty situation. But I can understand why it would be hard to have to listen to, especially since it often sounds as though Love has left the building.
Funny thing is, though, that the worse it sounds as though it is, the more I want to take the next flight over and just hug them and tell them it will be ok. The more pain they are in, the more I want to ease that pain and take some of the burden from them. So yes, over the years my father has accused me of being a "nursemaid", and not in a nice way. But look who's reaping the benefits now! My mother, several weeks ago, told me that my life should not have to stop and that I should continue as normal, despite the Cancer. I protested with the same arguments that I have previously laid out here. A few days later, she turned to me and said, "you know what I said about not stopping your life? Forget it. You do exactly what you have to do and what you think is best." So, here I am. Currently nursemaiding from afar, or at least giving the temp nurse as much guidance as I can.
So, to Cellophane Brother, if you are reading this. Tips from what I have learnt in the last few weeks:
1. It is never personal. Our family shout when they get angry/frustrated/hungry/tired/confused/scared/etc. It's a coping mechanism.
2. Try and figure out what the underlying cause of the shouting is. Often, it's quite simple, like hunger. Do not talk to your father about ANYTHING when he is hungry. I recommend over breakfast, if it's something important. Once you have figure out the cause, alleviate it, if you can, or address it gently if you can't.
3. There is bound to be A LOT of existential angst kicking around. If your father wants to talk about it, let him. If he doesn't don't push it. Let him joke irreverently if he wants, but always listen.
4. Actually, that's a point all for itself. LISTEN. You will learn to judge what is going on.
5. Don't ask about their plans, if you can help it. They don't know what their plans are. Try to keep your diary free for them, but make plans, with a view to cancel if you need to. Plan and Cancel, baby, that's the phrase of the year.
6. If they are fighting, you can take sides for the sake of the most vulnerable. They should know that, even though they are hurting, there are things you can and cannot do to another person. But don't get angry. Confront them with the truth. But, in the end, comfort them both.
7. Do some really serious thinking about what the situation is like for each of them. You will be able to really help once you understand what is going on in their heads. Only then can you be their Strength.
8. Always remember that you are there to prop them up. If you need support, I would probably recommend getting it from someone other than them. Your mother told me that the siblings should be talking to each other more. She's probably right, although it's difficult across oceans.
So, in short, Unconditional Love, Endless Patience and Profound Understanding.
You'll be fine.
Sunday, 20 December 2009
It was fun while it lasted
It's been a while since I posted. Sorry about that, kids. The main reason was that everything seemed to be hunky-dory. My dad is on his second course of chemo, and has his second treatment of four tomorrow. My parents went to a spa in Germany to chill out and had a wonderful time and I salute their creativity in coming up with the idea. He was swimming in hot springs and having massages and generally felt good. Until a couple of days ago. And now my mother is going mental.
So, two things happened. First, out of boredom, I suspect, my mother was having another look at the reports from his last set of tests and found the phrase "poorly differentiated". She rang to find out what it means, and I couldn't tell her, me not being a doctor and all that. We are still not sure (help?) but I am gathering that it means that the cancer is of the more agressive type. So what else is new? But she is upset, again, because the doctors seemed to have stopped speaking to her about it. This is the price you pay for being in different countries from your doctors. Also, maybe they believe that she is overreacting.
However, my father began feeling very unwell over the past couple of days and yesterday he began running a fever. And no one seems to be able to tell us why. He is almost two weeks past his last round of chemo, so it can't be a chemo reaction and fever usually means infection (she says with intimate knowledge of medical television programs). So my dad is feeling crappy and my mother is stressed out. And I feel guilty for not being there, again, because I thought they were all alone.
But lo and behold! Little Brother has arrived! I have prepped him, but I am not sure how good he is at dealing with the emotional stuff. I think he's more of a practical I'll-get-the-groceries-in type of bloke. And I don't think he is used to seeing his mother this distressed. It's one week before I see them, but that suddenly feels like an awfully long time.
I am going to call them, right now I think, to see what's what. It's nice that they are not in the entirely wrong time zone at the moment. The way my father is feeling now may inform my decisions about what to do next. Although, the way my mum is feeling, if she is right, my father may no longer be eligible for radiation by the time they get back to the US.
And that's why I haven't posted in a while. I was holding my breath, praying that the bubble wouldn't burst. Damn Hope and it's way of making you feel...well, hopeful.
Bum and arse. Stop the rollercoaster please. I think my dad looks queasy.
So, two things happened. First, out of boredom, I suspect, my mother was having another look at the reports from his last set of tests and found the phrase "poorly differentiated". She rang to find out what it means, and I couldn't tell her, me not being a doctor and all that. We are still not sure (help?) but I am gathering that it means that the cancer is of the more agressive type. So what else is new? But she is upset, again, because the doctors seemed to have stopped speaking to her about it. This is the price you pay for being in different countries from your doctors. Also, maybe they believe that she is overreacting.
However, my father began feeling very unwell over the past couple of days and yesterday he began running a fever. And no one seems to be able to tell us why. He is almost two weeks past his last round of chemo, so it can't be a chemo reaction and fever usually means infection (she says with intimate knowledge of medical television programs). So my dad is feeling crappy and my mother is stressed out. And I feel guilty for not being there, again, because I thought they were all alone.
But lo and behold! Little Brother has arrived! I have prepped him, but I am not sure how good he is at dealing with the emotional stuff. I think he's more of a practical I'll-get-the-groceries-in type of bloke. And I don't think he is used to seeing his mother this distressed. It's one week before I see them, but that suddenly feels like an awfully long time.
I am going to call them, right now I think, to see what's what. It's nice that they are not in the entirely wrong time zone at the moment. The way my father is feeling now may inform my decisions about what to do next. Although, the way my mum is feeling, if she is right, my father may no longer be eligible for radiation by the time they get back to the US.
And that's why I haven't posted in a while. I was holding my breath, praying that the bubble wouldn't burst. Damn Hope and it's way of making you feel...well, hopeful.
Bum and arse. Stop the rollercoaster please. I think my dad looks queasy.
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, 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.
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? :-)
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.
Tuesday, 6 October 2009
The Lack of Straight Dope
Very little to report, actually. My father had shortness of breath yesterday, relating to his chemo, and my mother flipped out and called every doctor in the world.
He's actually feeling surprisingly good, which is good, although I don't know how crappy he is supposed to feel after the chemo.
Remember that PET scan that he had done? Within all the excitement, I never asked how it went. So my brother tells me that the spot on my dad's liver does not register as cancer, which doesn't mean that it isn't. All it means is that it doesn't register. My parents are still convinced it is a fat deposit, and the race is now on to find a scan from 2003 that has it on it to prove the fact.
The jist is this: If, after the chemo, the spot stays exactly how it is, then it's a fat deposit. If it disappears, then it was cancer, but the chemo destroyed it. If it shrinks, but does not go away, then we have issues. In any case, we won't know until my father finishes chemo in mid-november and goes back for restesting.
In other news, I tried to book in for a PAP smear test yesterday (better safe than sorry), and got told that I have to figure out when my next period is and make an appointment for a week after that. What?! I might not be in the country, I have no idea when my period is and I can't think that far ahead! Oh well, when I have it I will try to figure out where I will be and take it from there. I am pretty sure that I can find a Ob/Gyn in Israel to check me. Although I do seem to have made an appointment to have a flu jab. Which I don't want. So I am an idiot who is seduced by advertising, especially if it comes in the form of a letter which says, "HAVE THIS NOW!"Silly me.
Being back in London is, overall, lovely. Closed the show last night and was really sad about it, even though the last few weeks with it have been hellish because of the theatre. I am also planning to see lots and lots of friends before I bugger off back to Israel, so please, if you want to see me and are in the UK, drop me a line. Seeing my friends is lovely and makes the world seem like a better place. I am keen on this illusion, so I will keep up with it. It's doctors that I wish would tell me something straight.
Basically, I am struggling with hope right now. Hope seems to be messing me around, and I am not impressed with it. People are so intent on giving me Hope that I feel like I am being lied to. I want to believe that my father will be absolutely fine like everyone else seems to, but if he isn't, I really need to know, because preparations must be made. Financial, legal, emotional. If this is goodbye, I can't have Hope standing in the doorway, barring my path. Because I think that there are many more important things, if things are really bad. "But they're not", the well-meaning bystanders are going to say. Well, if I don't know that, how the hell does anyone else? Not that I am angry. I am simply frustrated by being given what is potentially an illusion. It's fine for when you need to be strong and when you need to put on a brave face. But when that face is the only option you are being given because the doctors are trying to spare you the grief, I worry. In short, I want to have the choice. I want to be able to choose whether to cry or laugh, fight or grieve, support others or myself.
So, a request to the doctors in the ether: Give it to me straight. Because the truth will out, eventually, and I want to be able to say that I chose what to do with it.
He's actually feeling surprisingly good, which is good, although I don't know how crappy he is supposed to feel after the chemo.
Remember that PET scan that he had done? Within all the excitement, I never asked how it went. So my brother tells me that the spot on my dad's liver does not register as cancer, which doesn't mean that it isn't. All it means is that it doesn't register. My parents are still convinced it is a fat deposit, and the race is now on to find a scan from 2003 that has it on it to prove the fact.
The jist is this: If, after the chemo, the spot stays exactly how it is, then it's a fat deposit. If it disappears, then it was cancer, but the chemo destroyed it. If it shrinks, but does not go away, then we have issues. In any case, we won't know until my father finishes chemo in mid-november and goes back for restesting.
In other news, I tried to book in for a PAP smear test yesterday (better safe than sorry), and got told that I have to figure out when my next period is and make an appointment for a week after that. What?! I might not be in the country, I have no idea when my period is and I can't think that far ahead! Oh well, when I have it I will try to figure out where I will be and take it from there. I am pretty sure that I can find a Ob/Gyn in Israel to check me. Although I do seem to have made an appointment to have a flu jab. Which I don't want. So I am an idiot who is seduced by advertising, especially if it comes in the form of a letter which says, "HAVE THIS NOW!"Silly me.
Being back in London is, overall, lovely. Closed the show last night and was really sad about it, even though the last few weeks with it have been hellish because of the theatre. I am also planning to see lots and lots of friends before I bugger off back to Israel, so please, if you want to see me and are in the UK, drop me a line. Seeing my friends is lovely and makes the world seem like a better place. I am keen on this illusion, so I will keep up with it. It's doctors that I wish would tell me something straight.
Basically, I am struggling with hope right now. Hope seems to be messing me around, and I am not impressed with it. People are so intent on giving me Hope that I feel like I am being lied to. I want to believe that my father will be absolutely fine like everyone else seems to, but if he isn't, I really need to know, because preparations must be made. Financial, legal, emotional. If this is goodbye, I can't have Hope standing in the doorway, barring my path. Because I think that there are many more important things, if things are really bad. "But they're not", the well-meaning bystanders are going to say. Well, if I don't know that, how the hell does anyone else? Not that I am angry. I am simply frustrated by being given what is potentially an illusion. It's fine for when you need to be strong and when you need to put on a brave face. But when that face is the only option you are being given because the doctors are trying to spare you the grief, I worry. In short, I want to have the choice. I want to be able to choose whether to cry or laugh, fight or grieve, support others or myself.
So, a request to the doctors in the ether: Give it to me straight. Because the truth will out, eventually, and I want to be able to say that I chose what to do with it.
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.
Saturday, 3 October 2009
Having one's head in the sand may be the superior option to having it sliced off by a passing shit-conducive fan
So I am preparing to leave Israel and go back to London.
There is a fair amount of confusion between my parents about whether I am or am not insured in the States and whether, if the genetic testing comes back positive, I need to be tested at MD Anderson. So, I am potentially facing the prospect of having to decide whether to head to Houston every x months to be poked by American doctors, or whether it would be sufficient to do it in London (or wherever). I think I am arguing that if a doctor knows what they are looking for, then where the test is done becomes irrelevant. But my father swears differently, and says that his tests back in June say, in big letters on them "Patient wanted to know he was clear for cancer. And he is". Sadly, this turned out to be bullshit.
Anyhoos, enough about me. My dad starts chemo in about 6 hours (7am Houston time). I am pretty sure he is terrified, although he talks a lot of fighting talk on the phone. My mother says that I should stay in London for a little while longer than I first thought, as I can be the most use just after his chemo, when he is feeling shitty. He is supposed to be treated every two weeks. Clearly, though, the Israelis are not going to be treating him on a Saturday, so I am thinking his next treatment will be on Sunday 18th (which is a weekday. Don't ask). So I will kick around in London and hope for the best until then.
Funny thing is, I haven't heard from my brothers. I hope they are ok. If they read this, perchance, maybe they would like to give me a call? I miss them.
To sum up, I am still on the short-list for cancer of the everything and going home to think about my dad in peace. My mother finally agrees with us that, if it is the case that he is not going to be with us for all that long, he wants me with him. My dad and I just gave her the you-finally-got-with-the-programme look.
Oooh, oooh. Before I go, a list of lovely screening options for the various forms of cancer:
- Breat Cancer: Mammogram
- Ovarian: Pelvic Exam (which doesn't really tell anyone anything), Transvaginal ultrasound (which is not nice), CA-125 Assay (hoorah for blood tests)
- Pancreatic: Currently no standard screening exists although they are recommending Endoscopic Ultrasound coupled with Endoscopic retrograde cholangiopancreatography (ERCP) (tubes down my throat. Yummy).
Is it just me, or is cancer starting to sound good?
There is a fair amount of confusion between my parents about whether I am or am not insured in the States and whether, if the genetic testing comes back positive, I need to be tested at MD Anderson. So, I am potentially facing the prospect of having to decide whether to head to Houston every x months to be poked by American doctors, or whether it would be sufficient to do it in London (or wherever). I think I am arguing that if a doctor knows what they are looking for, then where the test is done becomes irrelevant. But my father swears differently, and says that his tests back in June say, in big letters on them "Patient wanted to know he was clear for cancer. And he is". Sadly, this turned out to be bullshit.
Anyhoos, enough about me. My dad starts chemo in about 6 hours (7am Houston time). I am pretty sure he is terrified, although he talks a lot of fighting talk on the phone. My mother says that I should stay in London for a little while longer than I first thought, as I can be the most use just after his chemo, when he is feeling shitty. He is supposed to be treated every two weeks. Clearly, though, the Israelis are not going to be treating him on a Saturday, so I am thinking his next treatment will be on Sunday 18th (which is a weekday. Don't ask). So I will kick around in London and hope for the best until then.
Funny thing is, I haven't heard from my brothers. I hope they are ok. If they read this, perchance, maybe they would like to give me a call? I miss them.
To sum up, I am still on the short-list for cancer of the everything and going home to think about my dad in peace. My mother finally agrees with us that, if it is the case that he is not going to be with us for all that long, he wants me with him. My dad and I just gave her the you-finally-got-with-the-programme look.
Oooh, oooh. Before I go, a list of lovely screening options for the various forms of cancer:
- Breat Cancer: Mammogram
- Ovarian: Pelvic Exam (which doesn't really tell anyone anything), Transvaginal ultrasound (which is not nice), CA-125 Assay (hoorah for blood tests)
- Pancreatic: Currently no standard screening exists although they are recommending Endoscopic Ultrasound coupled with Endoscopic retrograde cholangiopancreatography (ERCP) (tubes down my throat. Yummy).
Is it just me, or is cancer starting to sound good?
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