It all just got too hard

Actually, that's the long and short of it. My father is physically exhausted, has lost his hair and has about 2 weeks worth of radiation left. Super. He shouldn't have as much pain as he does, which worries my mother. He had a CT on Sunday, but no one has bothered to tell me the outcome of that. He's convinced he's dying, I'm convinced he isn't, and on it goes.

Problem is that his illness has gotten entangled in a bunch of familial emotional stuff, which it is unwise and unfair to post. It's insane that I can quite happily talk about my father's mortality, but when it comes down to family matters unrelated to his health, there is suddenly an issue of privacy. So, I'm really sorry, but I can't update. Things are happening, but they do not relate (directly) to whether my father lives or dies. All I can say is that the cancer has destroyed much more than my father's pancreas.

If there is anything relevant, I will post again, but until then, this needs to stay offline. I'm really sorry, but I have discovered the limits of the internet. Some things are just too hard.

It's hitting the fan right now

Good news is my father is in radiation and its all going well. He is thrilled to be shot of the nasty chemo.

Bad news is I was supposed to go and see them in the states next week and I have currently been uninvited. I can't go into detail here because it's too personal and too painful, but if you really want to know you can find a way to contact me instead.

I am out at sea, then. We have managed to get to a point where it is less painful for my father not to see me at all. The little voice in my head says "what did you do and how could you have been so awful?". My voice replies, "No no. This was not of my doing. Well, it was, but not in an evil way".

Jesus, it's so hard right now to try to convince myself that I am not a bad person. I still have no hard proof either way. But things are changing and I don't know which way the wind is blowing or if I am having any effect on it.

Sorry to be cagey, but this is not a conversation that should be inflicted on the internet.

Onwards and upwards

So my parents managed to make it across the big ocean and back to MD Anderson (after a mishap with a closed airport and not being allowed to leave). Supervising doctor is positive, although I am worried by my father's report, which was, "he is a stubborn one, but we broke him in the end". Yes, that's my parents all over. They will pummel you until you break.

He is done with the abraxin (the drug that was making him feel yucky in the current chemo) and is going back to more regular chemo. He has a session on Monday and then they are going to prep him for radiation, which probably sounds more exciting than it is. He is going to have radiation therapy every day for about 10 mins a day for 6 weeks, with weekends off, and then there will be about 2 months of nothing, while they wait to see if the radiation has fried everything. Then it's surgery to remove the dead cells, we hope, and then possibly more chemo. Fun.

In terms of dates, he is due to start radiation on the 25th of January and they are planning to leave Houston for sunny Thailand on the 7th March. My dad wants to spend his "time off" in Thailand, which makes me smile and shake my head. Then, in May sometime, they will be back in Houston and we will see from there.

I am probably planning to go to see them in Houston at the beginning of February. Maybe. They are still arranging their schedules.

I have absolutely nothing deep and meaningful to say about cancer or anything else today, as I am mostly spending my time looking up prices on flights. Did you know that it is half the price to fly return to the States than one way, even if you throw away the return half? Stupid airlines.

It's going to be a long road ahead

I have been working my backside off over the last couple of days to try to catch up on all the work I was not doing in Israel because of the shuttling back and forth to my parents. Yeah yeah, good excuse.

Right, so I suppose I will start with the important news, which will follow into the rest of this post:

We have to postpone the wedding/civil partnership thingy. My dad, who about a month ago, agreed to come, has now asked me to push it back indefinitely, as he does not have the "physical or emotional strength" for it right now. The theory is that, come April or so, my dad will have his surgery (we hope). Then one of two things will happen. First, they could open him up, remove the tumour and then he has 6-12 months of recovery and then remission. But it would put him at post-op in August, which would be bad. Second, they could open him up, see that it has metastised everywhere, go "holy shit!", close him up and then we have approximately 6 months to plan as fast as we can.

We are disappointed, obviously. And it's all well and good saying we plan and cancel, plan and cancel (my mantra for life right now) but weddings are difficult things to plan and cancel. So we are in much more indecision than ever. We will know more next week.

"We will know more next week" is starting to drive me up the wall, by the way, as it is always answers that come with many more questions.

However, what I really wanted to talk about was adapting and complacency. It's been about 4 months since my father's diagnosis. In the beginning we were upset, panicked and searching for answers. However, you can't keep up that state of panic for long. It is simply unsustainable. So you have to adapt. You get used to chemo and doctors always being around. If you are like me and are not the person with the cancer, you accept that you are not going to know every medical update and stop worrying about that too much. And you also stop worrying about death too much, I suppose. Que sera sera, while we can't predict any better. I know that my father is getting the best possible care and all the rest is up to the Fates. There is nothing I can do more than I am doing and continue to do.

But this means that, with my own resettling into something of a routine, so has the rest of the family. When you are not worrying about Cancer all the time, the old life worries come back. And suddenly you remember that you never really liked a certain member of the family or that you were having a problem with this and that area of business. Slowly life creeps back on you and you realise that you cannot stem the Tide of Life with the Dam of Cancer. It just won't hold it back. But you still feel like Life owes you something in return for the Cancer, so you still expect it from the people around you. And you suddenly find yourself in a Jesus-like position, where you are expecting the Tide to stop (with the help of the Dam, of course) and the water is welling up all around you and you don't know why. "What do you mean, you can't do that for me? Don't you know that I have cancer?"

I suppose, in my own oblique way, what I am trying to say is that things were easier when my only job was to acquiesce to what my father wanted. But I have found that, in matters of daily life, cancer, like love, does not conquer all, regrettably.

And we are nowhere near done. I expect that, for better or for worse, this will follow us for the whole of 2010. And that seems like a really long time to stem the Tide.

"and if I'm not dying?"

Sorry that I have been a bit remiss. Lot's of non-cancer related things have been happening.

Catch-up story. My dad was in Chemo on Monday. The treatment was supposed to start at around 9am. Anyone remember the first time that he was at this hospital? Right, well, it turns out that one of the drugs he was supposed to be on has only just becomed FDA apporved in the states and is DEFINITELY not approved for treatement in Israel. So the hospital would not give it to him. He had brought it himself, you understand, but they could not hold themselves responsible if anything went wrong with it. An insurance thing. So my mother and the Head Nurse went on a hunting mission to get written consent for this drug from about 3 different hospital adiminstrators. And at 2:30pm , the treatment finally started. Home by 6. Nice.

My parents are so annoyed that they are leaving here ASAP for Houston, even if they need to do the last round of chemo there. I don't know yet whether I will be joining them at any point. Currently, the set date is Saturday the 16th.

Right, now is where I vent my spleen a bit over things that I can't specify, because they partially relate to something else. But here it is. I am angry and sad and disappointed by the notion that my father may only be doing things because he thinks that he is dying and, if he finds out he is not, will revert straight back to the objectionable opinions that he once held. I was hoping that he would be having personal epiphanies about the important things in life, but it seems that the epiphanies are quickly and easily forgotten as the threat of mortality fades or just becomes a part of life. After all, he may believe that he is going to die, but that belief cannot be at the forefront of his thoughts all the time; it would drive him mad.

So the transformation into "sainthood" that I thought was happening is not. All that's happened is that he has discovered that people treat him like a saint who can do no wrong, people are afraid of upsetting him and people will do whatever he wants. I hate feeling this bitter! And this cynical and thinking such terrible thoughts about my parent. But if a man is acting under duress of having the fear of God put into him, how can he be trusted to follow through once that threat has been removed.

I hope to god that this particular thing that I am going through will not last long because loving someone and hating them all at once is hard and hasn't happened to me for a few years. Right now it needs to be simple. Man could be dying: do what you can to help. End of Story. Stop muddying it with motive. Even if that motive makes you want to break things.

Arse.

Chips are down, stakes are high. Now we play.

So, I have managed to drag my bum to Israel. My father looks ill and feels ill too. He is lucky that he has more hair than anyone I know, because it just looks thinner. And whiter. He is in a relatively good mood, or at least he was yesterday. My mother is just about coping, I think.

So, doctor news. My dad had a blood test and what I will call the Cancer Count is down. Good. It means that the tumour cells are dying. Problem is that he still feels shitty. Supervising Doctor seems to think that this is the chemo's fault. So the current recommendation is the following: After his 7th treatment (on Monday), if he doesn't feel better, he will come off the chemo, fly back to Houston and straight into radiation. That would bring us to the middle of January. Which is very fast. If he starts to feel better, on the other hand, he should continue with the chemo for the last dose.

I am at my grandmother's again, and feeling a little bit detached. Sensible Brother needs to talk to me about something that he can't say in front of other people. It could be completely unrelated, but something is clearly bugging him about my behaviour. Or something. I will know more soon, I hope.

Otherwise, we are still yo-yo-ing. One day I truly believe that this will all be over by Passover and that he will be fine. Other days I feel like the doctors are just making it seem better than it is and that people are just trying to protect us. Or me. Or someone. But no one is being protected here. Protection implies that someone is safe. None of us are safe without the Truth. With It, we are quite capable of protecting ourselves.

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.