Thursday, 31 December 2009

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.

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.

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.

Monday, 7 December 2009

Business as usual, i.e messed up!

Over the last couple of days, we have been dealing with mundane yet important matters regarding the Christmas period.

Every year, in December, my family has held a memorial service for my grandfather, who died in 1996. My father is very keen on this and has insisted that everyone be together for this occasion. It's the equivalent of a religious holiday for him (we can talk about the morbidity of this another time). My brothers have managed to worm their way out of it a couple of times in the past but, as far as I know, without fail, I have turned up every year to entertain my father and grandmother's friends as they pretend they are celebrating the life of someone long dead while scoffing all of our food (cynical? moi?).

In any case, my Grandmother was desperately hoping that my dad had forgotten about it this year and that, if she kept her mouth shut, the appropriate window of time would pass without the memorial taking place. Seriously, this is her husband we are talking about, and even she is fed up of it.

But, lo and behold, as soon as my father's chemo schedule was set (which he had the first dose of yesterday, by the way) he was talking about dates for the memorial. It usually happens on the last Friday before Christmas. Only problem is that on the 21st he is having chemo in Geneva. So the 25th it is! It is a Friday, after all.

Now, my mother has some serious objections to memorials this year, anyway. Throughout these last few months, with my father's immune system being compromised, no one has been allowed near him if they had a cold, sniffle, funny coloured tonsils, etc. Surgical masks are given out like sugar lumps with your coffee. So the idea of him standing outdoors, in midwinter (albeit Israeli winter), surrounded by 100 people who will be coughing on him and then inviting them all back to a very small flat hardly seems sensible. But apparently catching a virus that could kill him does not faze my father if it is in the name of a service to remember someone who is already dead.

So, in short, the argument is ongoing. There has been shouting and crying and my grandmother is about to add her considerable gravitas to the discussion.

In the meanwhile, I have prices for 9 different flight options, and my fiancee is losing her rag, as we can't tell her mother whether we will be turning up for Christmas in Dorset.

Otherwise, I think the chemo is ok. He is clearly impatient to get on with something. He just happens to be making our lives difficult in the process!

Thursday, 3 December 2009

I might even be around for Christmas!

That's me, folks, not my dad, who, hopefully, will be around for a good long time.

My parents are still deciding on what they want to do next, but it's definitely going to be chemo then radiation. It's new exciting chemo now, though, which is brand new chemicals, that are only available in the States, apparently, so anywhere they go, they will have to take the drugs with them. Fun! It's either two courses of chemo (one month) or four (two months) and then off to radation, which has to happen in Houston, over 5 weeks, approx.

I don't know what this means for me yet, as I was all set to stay here (London) until the radiaion therapy starts, but then I spoke to my mum. Apparently, the reason that my dad has been reacting so well to the chemo so far is because he has been getting "chemo lite" (the Diet Coke of chemo - not chemo enough!). This round is the real deal, including hair loss.

I was shocked by how upset I was with the idea of my father losing his hair. I mean, we talked about it before and, as far as we knew, his treatment did not involve any hair loss. I can't quite figure out why this is affecting me, even though suggestions might be that this is a physical sign of his illness, or, alternatively, that he has a lot of hair, unlike other men who, at his age may be balding, so he has a lot to lose. If I had to guess, I would simply say that it's making it real to me that something is hurting my father, be it chemo or the cancer, and I really don't like it. It's not fair and there is nothing I can do, but something very basic inside me is rebelling against the notion that anyone or anything would want to hurt my father, or, for that matter, could. Assholes.

So maybe I will go back out there, depending on where "there" is. Or maybe I will wait until radiation starts, which will be in January, at the earliest.

Christ. This never gets any easier, does it? I'm not trying to have a "woe is me" moment, or make out as if I am pitiable, but answers and some kind of stability would be nice. If anyone is listening, I would like that for Hannukah. I will forgo 8 presents for just two. Ta.

Wednesday, 2 December 2009

Decisions, Decisions

So, I fell asleep with the phone on my chest last night, until the call finally came. This will mostly be a medical post, so bear with me.

In short, the spot on my father's liver has not moved. It's a bloody fat deposit, like we claimed all along. Which means that his cancer has always been localised, which is fantasitc news. Also, the tumour is exactly the same size and does not seem to be spreading. Also good.

Now, what MD Anderson would like to do is send him for another round of chemo (with different chemicals - don't ask me why) and then radiation and then, hopefully surgery. We like surgery. Only problem is that my parents have French Surgeon who is willing to operate on it now, more or less. MD Anderson are worried that this could cause the cancer to spread (remember the angry tumour? We don't like him) thus effectively killing him.

The question therefore remains: Do we go the "safe route" and risk the cancer spreading despite the chemo, rendering it inoperable? Or do we operate now and take the risk that it will fail?

My parents are discussing it, along with Family Friend Doctor and many other people. It's the best possible outcome so far, but still leaves my family with some difficult choices.

After my parent's rang, my brother rang, thus waking me up again.

-"Have you heard anything?"
- "Um, yes. They called about 20 minutes ago"
- "I think they may have rung me first because they know that I am 6 hours ahead of them and you are not"

So, that's the update. Good news all round, but I am waiting to find out what they think further.

For me, this either means that my dad will be back in Israel for more chemo, which I might skip this time around, or he is going for the surgery, which I will definitely be joining them for.

It's a big like a soap opera cliffhanger.

Will she stay or will she go?

Tuesday, 1 December 2009

Today's the Day (apparently)

He's still feeling wonderful. This scares both me and Sensible Brother, who see this as an upset of the statistics. He, quite rightly, points out that, every time my father has seen a doctor, it has been bad news: "Oh, it can't be a tumour... it's a tumour", "There is a 70% chance it's not cancerous... it's cancerous", etc.

He had all the tests yesterday, and I was waiting for a text message to tell me what was going on, which they clearly failed to send. Bollocks. So I have to wait another 6 hours until they wake up, and then I will be told that they still don't know anything, so don't ask. What I do know is that they have a huge conference with the doctors today, so we had better bloody know something at that point.

I do quite fancy Paris at Christmas, though.