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.

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? :-)

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.

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!

Would you rather hear more medical stuff, or more emotional rantage?
Give me wonderful medicine and drugs. Definitely drugs.
I want to hear the details of your thrilling psychological state. Bring on the meltdown!
Please Specify:
ugg boots

So yes, I am making this interactive now. Like Choose Your Own Storybook, only Choose Your Own Blog. Kinda.

Good luck!

Thursday, 22 October 2009

It's my cancer, and I'll cry if I want to

My parents went to see an acupuncturist and a nutritionist and my father is on a new diet. Great. Nothing very physically significant has happened, but, emotionally, it's a whole other ballgame.

This has been bugging me for a couple of days. The optimism. How people keep saying, "you must keep strong and keep him strong and fighting". There is something deeply unnatural to me about being told that you have cancer and your only thought being "bring it on!" It my heart, I believe there is a process and, personally, if it were me, I would not want to see anyone at the moment. I would want to close the door on the world and cry for a little while. Not because I was giving up, not because I was facing death, but just because I am entitled to cry and feel shitty for a little while if I goddamn want to!

The strain of fighting and maintaining the "positive thinking" for the sake of everyone else must be exhausting. And as soon as he stops, people accuse him of giving up. And then the guilt comes. "you don't want to get better. You aren't even trying. You don't love me enough to try". This is speculation, but I am thinking that my father is not the man to give up. But he is the man to take a breath and think for a while. But while he's thinking, people get hysterical. "you're giving up! Stop giving up!"

Again, I am only hoping this is the case. If my mother is right in what she told me as she cried on my shoulder last night, and the light really has gone out from under him, then that's bad. But I am hoping that it's more like the former. "You are allowed to cry, then I am going to goddamn cry!"

My mother asked me about the grief cycle, which I have written about here before. I gave her the list: Denial, anger, bargaining, depression, acceptance. She said "that doesn't seem right. Where does the fighting bit come in?" I said that I thought that came under Anger, but that this model applied to grief, not to a non-terminal prognosis. But I actually thought, my god, I never realised the very strong genetic thread in my family: The need to fix.

I am often accused of trying to fix everything, even things that either can't be or do not require fixing. I have worked to try to get better at accepting situations that are out of my control. I am not saying that it's not great that my mother sent me out to get enough health food for an army in the belief that a proper diet will aid my father's treatment. What I am saying is that this, perhaps, is a symptom of denial of the situation rather than a reaction to understanding it.

"If I do enough things to try to fix this, I won't have to face that it's happening, because it will just go away, thanks to all the marvelous fixing that I have done". It's cancer. It's not just going to go away.

On the other hand, my father is feeling pain in his pancreas, but, we believe that this is the "good pain", the pain that says that the chemo is doing it's job. So even though he spent most of the afternoon in bed, I see this as a good thing.

All the rest is bullshit. Is it just me, or do I keep saying that?

Tuesday, 20 October 2009

Chemo Stories

Yesterday was intense. I ended up in bed at 8pm. That intense.

Basically, chemo goes like this (anyone who doesn't know my famous blog-by-schedule is about to discover it!):

6:45am - Get up. Find relevant computers, get dressed, brush teeth.
7:15am - Grab a slice of bread with cottage cheese
7:30am - Leave for the hospital
7:45am - My mother realises that she has left all the medical notes at home. I get out of the car and hail the first cab.
8am - Cab arrives back home.
8:02am - Cab on the way to hospital again, with medical notes
8:30am - I struggle into the ward. My parents are waiting in reception
8:31am - I realise that I dropped my phone in the cab
8:45am - The cabbie picks up my phone after I have been ringing it compulsively. He says he will bring it back to me.
9:30 - We are still sitting at reception. Evil Dissenting Doctor comes by and chats to my dad. For an hour.
10:30 - My dad is shown into a room with a bed in it and no windows. He is hooked up to some saline and some preparatory fluid. No chemo yet because they have not finished preparing it in the lab.
11:30am - Lovely nurse comes in to say that still nothing has happened. We eat some sandwiches. My phone arrives with the cabbie. My parents begin to call in the big guns, best friends of the doctors, heads of the hospital. You know, the big guns.
12:30pm - The drugs arrive. The ward shuts at 3pm, so they now have 2 1/2 hours in which to give him the drugs that would usually take 6 hours. The drip is moving really fast.
3pm - The drip finishes and we are packed out. My dad has chest pains, so is ushered into a doctor's office to check him out.
3:30pm - There is nothing wrong with him.
3:35pm - Dissenting Doctor's Nurse wants us to come up and have a chat.
4:45pm - We leave the hospital
4:50pm - We get stuck in traffic
5:15pm - We get home. My father gets into bed.
5:25pm - My grandmother arrives
6:30pm - My grandmother leaves my dad to sleep and I take her to eat burgers.
8pm - I come home and collapse.

So, relevant details. Firstly, Israeli hospitals are just like any other. They are brightly lit with lights that hurt my head. They have no windows, they are busy and they are harsh. Overall, not a nice place to be. They have promised that it won't take so long to get the medication next time, which my dad is pretty pissed about.

Otherwise, my father feels fine. His pain suddenly dropped off yesterday, which truly makes me think that it was from the endoscopy. He was feeling weak yesterday, but this morning my parents went for a walk. So good.

My grandmother, however, is having a hard time. She wanted to come to the hospital yesterday, and my parents fobbed her off. I don't know whether this is right or not, but they had decided that they did not want her there. So she feels as if she is being sidelined. Nice. She has a lot of hurt feelings right now, as if no one wants her, and, frankly, it's not in my power to rectify this. It's quite hard enough dealing with all the fraught emotions on this side of the family without having to think about who is feeling left out. Nerves are raw, and everyone is trying to peer through the glass, which is so dark at the moment that the frustrations are high. And when you can't blame it on god or on the fates, blame it on each other. So we are all carrying a little bit of blame inside, which we are carrying for everyone else. And that, kids, is called sharing.

On a side note, I would just like to make it clear that this blog is my personal thoughts. It does not reflect or pass comment on anyone's experience but my own. By definition it is deeply subjective. And it's the best way that I have right now to communicate any thoughts or feeling that I may have. It is not meant to cause offense. It is not meant to provide accurate data about my father's conditions. It is not meant as a judgement nor is it meant for judging. I am grateful to everyone who reads it and just wanted to make that clear, so that no one gets upset or angry. Really, I would like to keep those emotions off the blog entirely. If we can.

Monday, 19 October 2009

Israeli Angst

Things are tough out here. When this kicked off, I didn't think it was relevant, so I didn't blog about it, but suddenly it is, so let's go back a tick.

When my parents arrived in Israel last week, they went to see the doctor here that would be in charge of my father's treatment for the next few weeks. Now, he is still under the care of the nice folks at MD Anderson, this guy is just like the local rep.

However, we all know doctors. They have to give an opinion. And the opinion was this: "You are wasting your time on the chemo. The tumour is growing every day. If you don't have it operated on now, you are giving yourself a death sentence."

To begin with, my mother said, "I knew it!" and my father said, "If I want more opinions, I'll ask for them", but slowly things began to change.

They are still going with the MD Anderson opinion, because, as I said, it's like standing in the supermarket queue which you think looks shorter and keeping on switching. It doesn't work. But my father has had the fight just blown out of him. I think he is scared that whatever he does now, if he dies, some doctor will have the satisfaction of saying, "Well, yes. He didn't listen to MY advice". Opinions are cheap. The consequences of them cost the world.

So we are off to chemo this morning, and my father is feeling a bit crappy, psychologically. He was trying to convince my mother of a suicide pact a couple of nights ago. So, my job has now been clarified to me by my mother: Endless optimism. I am to tell him that everything will be fine, find stories of people who have survived, find amazing friends and family who can tell him how good the doctors are. Which is why this blog is useful. With all that optimism, my head might explode.

Until now, I have felt a bit like a fish out of water around here. I have discovered, though, that one of the most useful things I can do is washing up! So I do that a lot.

Seven hours of chemo. We are going to go through photos to make into an album for my grandmother. But I am thinking that I should have brought a deck of cards.

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.

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.

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...

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.

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.

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.

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?

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.