My parents are fighting. I blame my father's pancreas. He gets irritable out of pain and then shouts at whoever happens to be around. So we are tolerant. My mother has started therapy, which she wanted me to come along to on Tuesday, but I have to be in London. My grandmother is throwing herself into courses and classes, which is good, but she is still not sleeping at night. Does it make me a bad person that I sleep fine? Am I more or less enlightened by not worrying the whole time? Am I in denial, or am I at the "acceptance" phase of the proceedings? I am pretty sure I could worry myself into a tizzy if I wanted to, but I don't really. I would rather sleep. Does that mean I don't care? I'm not really comfortable with these ideas, so I will leave them out there for the cosmos to deal with and come back to them when I have some answers.
In the meanwhile, plans have changed. And, apparently, I was given false information. So, listen up everybody:
MY FATHER DOES NOT HAVE THE GENETIC MUTATION. ANY OF THEM.
Which means that I am unlikely to. Which is good news for my brothers and I, but bad news for my dad, as the non-genetic version is harder to treat.
So, I went in to the kitchen yesterday clutching a calendar. I sat down with my mother and told her about the Plan for the next few weeks. The first thing she said was "you really don't need to come with us to Houston". I am not sure I agree with that sentiment, but my father says the same, so lets go with that.
So, the revised schedule looks like this:
9th November: Back in London
16th November: Israel Again
22nd November: Fly with parents to Geneva
23-26 November: At some point fly back to London
Stay in London until I know otherwise.
What else? It's a bit stressful out here at the moment, although my father is feeling physically well, I think. Emotionally, everyone is a bit stretched right now, and the biggest problem is the relationships between each other rather than our own personal coping mechanisms. This probably suggests to me that something is faulty in those, but just because we are finding each other difficult right now does not necessarily mean that people are taking out their anxieties on each other. I hope.
Funnily enough, I have some work that I have to do and I have to supervise the repairs to the house, that was battered in the storm we have had over the last two days. Apparently the fuse box caught on fire on Friday. That's all we need!
Showing posts with label genetic mutation. Show all posts
Showing posts with label genetic mutation. Show all posts
Wednesday, 4 November 2009
Saturday, 24 October 2009
How do you solve a problem like a grandma?
So we are looking towards the future right now, to the upcoming trip back to Houston to see what work the Chemo may have done. It's not until the 1st of December, but we can already foresee an issue: My grandmother fully intends on coming and staying for as long as it takes. And she wants to bring my great uncle.
What's the problem? I hear you ask. Well, I would, ordinarilly be in favour of my grandmother being with my dad for as long as possible. She is the mother of an only child and has every right to be with him for as long as she likes. Problem, though, is that she freaks out easily, gets angry when she is not kept in the loop but does not understand any of the medical things she is being told. She, for instance, had a go at my father yesterday for eating almond spread, because, she says it's fattening. She doesn't realise that the rules have changed and that he now has to gain weight, otherwise things will be bad.
In fairness, if my parents kept her up to date with what the nutritional requirements were, etc, then she would not make these irritating mistakes, but the other argument is that she doesn't listen. She only knows what she has heard from her friends in the "I knew a friend of a friend who had your type of cancer and they did... or, I think it was cancer. Or maybe it was MS" sort of way. So she thinks she knows best (ahhh, Jewish Mothers) and, in the meanwhile, my mother is the bad guy who is trying to keep her away from her son and might well kill him in the process.
Now, things being well in Houston, the next step may be radiation therapy and then he may be in Houston for several months. And true, anyone can hold my father's hand, but my mother knows what drugs he is on, how much he takes and how he reacts to everything. So, as much as it's important to support him, his "primary carer" i.e. my mother, needs support to. And this does not come in the form of my grandmother.
My mother rightly says that she will not trek to hospital with us every day and will end up in her hotel room going stir crazy because she has no idea what is happening with her son. And then she will need to know every infinitessimal details and then she will worry about it, which causes my parents more worry.
In short, my mother says that she is not sure she will survive Houston as it is, and with my grandmother there, the chances are even slimmer.
I told them to sit her down and have a candid conversation with her about this. I think she will respond to reason and, when she sees that no one is lying to her or trying to trick her, she will calm down. After all, the trip to Houston could be only 1 week long, and then straight back to Israel for more Chemo. But they are not convinced.
So what do you do? Is it a woman's inaliable right to be with her son when he is suffering, even at the expense of his wife's sanity? And can the two learn to coexist in any reasonable way? Tune in Next Week for the next part of Days of our Deaths!
Oh, P.S Preliminary results have come in for the genetic tests. So far, my father tests positive for all three mutations. And I now have American medical insurance.
What's the problem? I hear you ask. Well, I would, ordinarilly be in favour of my grandmother being with my dad for as long as possible. She is the mother of an only child and has every right to be with him for as long as she likes. Problem, though, is that she freaks out easily, gets angry when she is not kept in the loop but does not understand any of the medical things she is being told. She, for instance, had a go at my father yesterday for eating almond spread, because, she says it's fattening. She doesn't realise that the rules have changed and that he now has to gain weight, otherwise things will be bad.
In fairness, if my parents kept her up to date with what the nutritional requirements were, etc, then she would not make these irritating mistakes, but the other argument is that she doesn't listen. She only knows what she has heard from her friends in the "I knew a friend of a friend who had your type of cancer and they did... or, I think it was cancer. Or maybe it was MS" sort of way. So she thinks she knows best (ahhh, Jewish Mothers) and, in the meanwhile, my mother is the bad guy who is trying to keep her away from her son and might well kill him in the process.
Now, things being well in Houston, the next step may be radiation therapy and then he may be in Houston for several months. And true, anyone can hold my father's hand, but my mother knows what drugs he is on, how much he takes and how he reacts to everything. So, as much as it's important to support him, his "primary carer" i.e. my mother, needs support to. And this does not come in the form of my grandmother.
My mother rightly says that she will not trek to hospital with us every day and will end up in her hotel room going stir crazy because she has no idea what is happening with her son. And then she will need to know every infinitessimal details and then she will worry about it, which causes my parents more worry.
In short, my mother says that she is not sure she will survive Houston as it is, and with my grandmother there, the chances are even slimmer.
I told them to sit her down and have a candid conversation with her about this. I think she will respond to reason and, when she sees that no one is lying to her or trying to trick her, she will calm down. After all, the trip to Houston could be only 1 week long, and then straight back to Israel for more Chemo. But they are not convinced.
So what do you do? Is it a woman's inaliable right to be with her son when he is suffering, even at the expense of his wife's sanity? And can the two learn to coexist in any reasonable way? Tune in Next Week for the next part of Days of our Deaths!
Oh, P.S Preliminary results have come in for the genetic tests. So far, my father tests positive for all three mutations. And I now have American medical insurance.
Saturday, 17 October 2009
Israeli Limbo
So, several things are happening at the moment. Firstly, my suitcase didn't follow me to Israel, so I am on the family desktop.
Secondly, my parents are not coping particularly well. They were underplaying how much pain my father has been in since they fiddled with his insides on Thursday last week. My mother is trying to give him different cocktails of drugs to help with this, but this means that no one but her can really help to care for him.
My mother says that my grandmother has become unbearable since they arrived in Israel. I told her that I would go and babysit, but that I feel like I am more useful at my parent's house right now.
Otherwise, the place has become like the train station that my grandmother's was when I was over there. My mother has no help and is therefore constantly offering coffee, cake and meals and then washing up after everyone, in between small talk. She is really hating it right now, but also knows that it's very helpful for my Dad. He had arranged for an enormous barbecue this afternoon before my mother had a mini-breakdown and begged him to cancel. Which he did. But that doesn't mean that it's going to stop. People keep turning up unannounced, because they think it's fine to do that.
Which brings me on to the complete lack of planning. My mother says that they are only planning from one minute to the next because they don't know how my father is going to feel. Well, I think that's tough. Funnily enough, this is actually something I know something about, living with a partner who has a chronic illness. So what do we do? We plan anyway, and then we cancel. We plan and cancel. If we didn't plan anything, we would never see anyone, we would not have gone on holiday and we would not be getting married. So you cancel. It's better than feeling well and having nothing to do.
It's my grandmother's 80th birthday next week. What's the plan? What plan?
In other news, my mother is seeking professional help to help her cope. And by this I mean cleaner, someone to help her host these stupid coffees and a counsellor. I am helping in any way I can, which is washing dishes at the moment, but I will see what needs doing. Limbo is an understatement for where this house is.
P.S The genetic test that we were supposed to have results for by now hasn't been done yet. It will take another two weeks. Why? Because the insurance company was querying it and forgot to tell anyone. C'est la vie.
Secondly, my parents are not coping particularly well. They were underplaying how much pain my father has been in since they fiddled with his insides on Thursday last week. My mother is trying to give him different cocktails of drugs to help with this, but this means that no one but her can really help to care for him.
My mother says that my grandmother has become unbearable since they arrived in Israel. I told her that I would go and babysit, but that I feel like I am more useful at my parent's house right now.
Otherwise, the place has become like the train station that my grandmother's was when I was over there. My mother has no help and is therefore constantly offering coffee, cake and meals and then washing up after everyone, in between small talk. She is really hating it right now, but also knows that it's very helpful for my Dad. He had arranged for an enormous barbecue this afternoon before my mother had a mini-breakdown and begged him to cancel. Which he did. But that doesn't mean that it's going to stop. People keep turning up unannounced, because they think it's fine to do that.
Which brings me on to the complete lack of planning. My mother says that they are only planning from one minute to the next because they don't know how my father is going to feel. Well, I think that's tough. Funnily enough, this is actually something I know something about, living with a partner who has a chronic illness. So what do we do? We plan anyway, and then we cancel. We plan and cancel. If we didn't plan anything, we would never see anyone, we would not have gone on holiday and we would not be getting married. So you cancel. It's better than feeling well and having nothing to do.
It's my grandmother's 80th birthday next week. What's the plan? What plan?
In other news, my mother is seeking professional help to help her cope. And by this I mean cleaner, someone to help her host these stupid coffees and a counsellor. I am helping in any way I can, which is washing dishes at the moment, but I will see what needs doing. Limbo is an understatement for where this house is.
P.S The genetic test that we were supposed to have results for by now hasn't been done yet. It will take another two weeks. Why? Because the insurance company was querying it and forgot to tell anyone. C'est la vie.
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?
Friday, 2 October 2009
whose cancer is this, anyway?
Speaking to my parents yesterday, I got only one clear indication: They are worried about me. Sounds weird? Well, here's why.
Apparently, there is quite a high chance that my father has a specific genetic predisposition to pancreatic cancer. And breat cancer. And ovarian cancer. He is being tested today to find out if he has this mutation. If he does, then there is a 50% chance that his children do as well. However, I have managed to pick up every single one of his genes and seemingly none from my mother, so the chances are pretty good that I have it, if he does. And so do my brothers. This is more of a problem for me, though, obviously, as they don't have breasts or ovaries.
So, in a couple of weeks when those test results come in, I might have to be tested myself (and don't start me on how much I am going to have to deal with having blood tests), and, if the test is positive, I am going to have to be screened for all these cancers every few months for the rest of my life.
My parents are worried about the inconvenience. I am worried about my potentially shortened lifespan and the prospect of having cancer coming out of every orifice. Nice.
I have a very poor record when it comes to considering my own mortality. I truly think I am going to die on airplanes and I think about death a lot. So the idea that I might be halfway through my life scares me shitless. Yet another reason to run off, get married and start having sprogs as quickly as possible. Only not really.
Yeah, but it's all contingent on him having this mutation. Which everyone actually thinks he does this time. The reason is that, if he does have it, it makes the cancer much easier to treat, because they know what type it is and what to target. So, good for him, not so good for the younger generation.
I'm feeling mildly cynical today, can you tell?
In other news, I have taken my grandmother's advice to not take anyone's advice and have booked flights back to London for the very immediate future. I want to be back in Israel when my parents arrive, and I reckon I am going to be bouncing back and forth for a while. So, London on Saturday night, where I will stay for 10 days. Then we will think onward. Life, shouldn't stop, they say, but until my personal view of my father's prognosis improves, I am not taking any chances. Plus, I hear that chemo isn't nice.
Finally, I want to thank all the people who have dropped me messages via any means this week. People that I have not spoken to in years have come out of the woodwork in support. Funnily enough, this is not like my attitude on birthdays. I disabled my facebook wall every year on my birthday, because I think that if people want to wish me a happy birthday, they should make an effort. I think this is different because people genuinely care, and also, because I have received several very thoughtful and heartfelt messages. So thank you. Thanks for being supportive. Thanks for making me smile. Thanks for showing me that people out there care and that there is a point in my writing all of this (other than for informational purposes anyway). You guys rock.
Apparently, there is quite a high chance that my father has a specific genetic predisposition to pancreatic cancer. And breat cancer. And ovarian cancer. He is being tested today to find out if he has this mutation. If he does, then there is a 50% chance that his children do as well. However, I have managed to pick up every single one of his genes and seemingly none from my mother, so the chances are pretty good that I have it, if he does. And so do my brothers. This is more of a problem for me, though, obviously, as they don't have breasts or ovaries.
So, in a couple of weeks when those test results come in, I might have to be tested myself (and don't start me on how much I am going to have to deal with having blood tests), and, if the test is positive, I am going to have to be screened for all these cancers every few months for the rest of my life.
My parents are worried about the inconvenience. I am worried about my potentially shortened lifespan and the prospect of having cancer coming out of every orifice. Nice.
I have a very poor record when it comes to considering my own mortality. I truly think I am going to die on airplanes and I think about death a lot. So the idea that I might be halfway through my life scares me shitless. Yet another reason to run off, get married and start having sprogs as quickly as possible. Only not really.
Yeah, but it's all contingent on him having this mutation. Which everyone actually thinks he does this time. The reason is that, if he does have it, it makes the cancer much easier to treat, because they know what type it is and what to target. So, good for him, not so good for the younger generation.
I'm feeling mildly cynical today, can you tell?
In other news, I have taken my grandmother's advice to not take anyone's advice and have booked flights back to London for the very immediate future. I want to be back in Israel when my parents arrive, and I reckon I am going to be bouncing back and forth for a while. So, London on Saturday night, where I will stay for 10 days. Then we will think onward. Life, shouldn't stop, they say, but until my personal view of my father's prognosis improves, I am not taking any chances. Plus, I hear that chemo isn't nice.
Finally, I want to thank all the people who have dropped me messages via any means this week. People that I have not spoken to in years have come out of the woodwork in support. Funnily enough, this is not like my attitude on birthdays. I disabled my facebook wall every year on my birthday, because I think that if people want to wish me a happy birthday, they should make an effort. I think this is different because people genuinely care, and also, because I have received several very thoughtful and heartfelt messages. So thank you. Thanks for being supportive. Thanks for making me smile. Thanks for showing me that people out there care and that there is a point in my writing all of this (other than for informational purposes anyway). You guys rock.
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