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.

Friday, 27 November 2009

Is it only the 27th? When's December already?!

So this post is mostly about waiting. Again. Thrilling, I know. Ended up flying back into London a little bit early for personal reasons, so now I am waiting in London on my own. Which makes things feel both normal and bizarre, seeing that I am out of the loop. It scares me how much out of the loop a person can be, as illustrated by my brother last night. We were chatting and he said, "I don't know where I need to pack for or where I will be next week. After all, they could say that he's doing really well and to come back in a month for more chemo and then he will just bugger off to thailand". Stunned, I said "Um, no, there is less than an iota of a chance that Thailand is anywhere in the realm of possibility". It's weird, because he knows much more about stuff like the Whipple Procedure (the surgery that is sometimes done on pancreatic tumours) but didn't seem to realise that if you leave this tumour alone for a month, it could treble in size and kill my father.

My grandmother is recovering from her back injury and her life is almost back to normal. However, we have a new war injury, namely my mother, who fell off the pavement and hit her head and wrist. She needed stitches in her forehead and is wearing a sling. God knows if it's broken, but she will get it checked out in Houston. I feel irrationally guilty, as if, if I had been there, this would not have happened. I don't need to be told it's not my fault, but sometimes you feel it anyway.

The reason updates have been thin on the ground is that nothing much has happened. We are all just waiting. It's been almost two weeks since my dad's last chemo. He is feeling good enough to walk to work (I walked with him and it takes about 40 mins) and stay at work all day. He also felt well enough to travel, alone, to an overnight meeting in Bucharest and came back tired but chirpy. It's all too good to be true. I feel like we are setting ourselves up for a fall, because it can't possibly be SO GOOD. I am worried that, come the 1st December, we will find out that the cancer has spread everywhere and that he may feel well, but he has 2 months, tops.

I know he has had the best possible care (most of the time) but, after all, he was staged as 4, and that's not a funny staging. It would be insane to allow yourself to believe that just the chemo has done the trick, right? Chemo doesn't do that with the pancreas. But maybe I have heard just the horror stories. However, in the UK in 2005, there were 7,632 cases of Pancreatic Cancer. There were also 7,288 deaths from Pancreatic Cancer. And my father is flying off to Romania. What? I mean, WHAT?!

Monday, 23 November 2009

Sharing the Caring

I left Israel with my parents yesterday. They had been there for 6 weeks, which is a very long time for them. And it was more emotional than anyone expected, especially when it came to my grandmother.

So I was left with a really crappy decision which did not occur to me until 12 hours before we left. It goes something like this:

I have dedicated this time to spending with my parents, supporting my mother and seeing my father. However, my grandmother has done her back in, is in pain and has been having all that other trouble. She is also very fragile and upset about my father, as she fears the worst all the time. Consequently, she causes my parents to worry, especially my mother, who feels like she wants to be looking after them both, but can't. So she feels guilty.

On the other hand, my grandmother seems to be fine getting on with her life. She has millions of friends, an enviable social life and, apart from the fact that she doesn't have a proper doctor, is sorted whether we are there or not. In fact, when I was there last time, she wasn't doing all the things that she wanted to because she felt as though she had to "entertain" me. Also, hopefully her back will be better in a couple of days.

In short, when my grandmother left our house and I drove her home, she started crying and did not stop for a long time. My mother, at the same time, also cried, for the fact that she is only one person and can't take care of everyone at once. So I suddenly started considering staying in Israel to look after my Gran, despite the fact that I much prefer being with my father and in the loop.

Eventually, I decided to go, just out of ease, because changing all the flights AGAIN would have been a pain in the arse. But maybe I should have stayed for her.

In the meanwhile, the optimism around here is overwhelming. My dad feels marvelous, even though he is prone to having energy crashes in the early evenings. My mother is absolutely convinced that he will be ready for surgery after the 1st December. I believe her, but am slightly worried about what will happen if the news is not good. We are getting ourselves so geared up to the next stage that we find it hard to imagine a world in which we are told to go back to chemo.

Otherwise, tensions are a bit high, as they always are. There is a strange thing going on where my father blames my mother for the cancer, which I have not gotten to the bottom of. I will let you know when I know anything more about that.

And, just in case you were wondering, we are waiting.

Friday, 20 November 2009

Gran has an "episode" and we don't really sleep at night

My dad feels marvelous. Psychologically, he feels as though the chemo has now ended and he can "feel" it leaving his body. This is, of course, bollocks. He now has a greater concentration of chemicals in his system than ever before. But if it makes him feel better, suits me.

But the wider impact is being felt, kind of. This story is slightly unrelated to cancer, but bear with me.

I went to stay with my grandmother yesterday. She has done her back in and has nerve pain shooting up her leg and up to her back. I went over to help her out. She went to an orthopedic specialist, who gave her some codeine based medicine (with caffeine) and a COX2 inhibitor. She's in pain, but is coping.

We went to bed at about 9.30 last night. At about 10pm, she came to my room saying that she didn't feel well. She had tightness in her chest and a heavy head. She was flushed but not hot. And her blood pressure was 205/77 . So we called her private emergency health people, who came and claimed that it was because she had forgotten to take her blood pressure meds and had OD-ed on the caffeine from the new pills. I don't buy it, but anyway.

They went away, she took the pills and went to sleep. She didn't want to wake my parents because she did not want my father to worry, which is how this ties in with the cancer. She still has very high blood pressure this morning, and the doctor says its the COX2 interacting with other stuff. Whatever. I am less than convinced, but don't have a better explanation as to why a woman's blood pressure would spike in the middle of the night. When I do, I will let you know.

So, in short, we are all feeling the burden of my father's illness in our own ways. My grandmother could be having a stress related reaction, although this seems unlikely. But I am beginning to feel a bit like a firefighter: you get one fire under control and another one starts somewhere else and you need to leave the first one unattended to deal with the second, and so forth.

Heading to Geneva on Sunday, which will be nice.

Otherwise, what are we doing? Oh yes, I almost forgot. Waiting.

Monday, 16 November 2009

So I'm not actually in Israel

Everything has been quiet for a few days. My father had his last round of Chemo yesterday, and I believe all went well.

My mother told me that she has been trying to contact the woman who recommended us to French Surgeon. He had treated her husband and that's how the whole thing came about. There had been radio silence for a while and then my mother found out that the man had died, which was why his wife was unavailable. And apparently French Surgeon knew this when we sat with him and never mentioned it. Nice. I won't dwell on it, because the two cases are very different, but it happened. So it goes.

I was supposed to go to Israel last night, but I put off my flight because I felt sniffly in the morning. Seriously. My father's white blood cell count was down yesterday at chemo, so his immune system is feeling a bit down in the dumps. The last thing he needs is someone coughing on him. I feel much better this morning, but I have rearranged my flight for Tuesday (£30 change fee, thank you BA!)

So I am still in London.

My mother just told me that the chemotherapy madness was even worse yesterday than when I was there. Apparently, there was only one nurse on duty for scores of patients, and, because my dad's nurse was not there, this one had no idea which treatment her needed. "Is it treatment one or two?" Cue my mother calling Doctor Friend, who came down and gave her the right prescription. But my father has been given two different treatments in the past month. So one of them MUST HAVE BEEN WRONG. Great. My mother and I are both losing faith in this hospital very fast.

Also, in the 14min conversation that I had with my mother today, she said that she thinks that I am far too willing to give up my dreams for the good of other people and that I should not be doing it. She is referring to bouncing back and forth to see my dad, but doesn't only refer to that. I told her about the project I am slowly cooking up to placate her, but, as usual, at the back of my head, I hear "27%!" So I sacrifice a year to my father. So what? As far as I know, I have a few more in reserve, which he may not.

Beh. Everything will be clear on the 1st. Maybe. Or Maybe Not.

Tuesday, 10 November 2009

"And by a sleep to say we end the heart-ache"

I dreamt that I had my very own support group at a hospital where my dad was having treatment. These are either the people I would want around me, or I have been watching too much television. My lovely group were diverse and supportive, also having family battling cancer.

There was Tom, the kind gay boy, Jack, the funny, stoic guy, a lovely, shy black girl that I didn't get a name for in the dream, and some other people. It wasn't a "sit around and swap sob stories until you reach catharsis" group. It was more of a "hook up, have coffee, and talk rubbish" group.

So that was nice. And also a dream. My brain likes dreaming about chemotherapy recently. I find myself in hospitals a lot. My father is still about 5 days off his next round, and I have gone back to London, so god knows where my head is.

I am trying to get back to work. What I mean is that I am tentatively beginning to plan things, make things happen, in the full knowledge that I may have to cancel them, but caring less. I would like to be able to apply for jobs in February or March, just because I figure something will have to have happened by then. this is a total fallacy, but my brain is unwilling to accept a future where everything is still misty in 4 months. So I have picked a date out of the air. We shall see if I am right.

The 1st December draws nearer. I am loathe to believe that our entire futures hang on the balance of this one day, or one set of tests. Because I have seen how these kinds of expectations have gone so far: "We will know much more once we have a diagnosis." "We will know much more once we know if these are other growths". "We will know much more once we know if it is genetic". It's all bullshit. We are never any wiser about what the future holds, so I am not going to pin my hopes on this time. It's just common sense.

Sunday, 8 November 2009

"Cut me open, Doc"

We went to see a surgeon yesterday, who shall be henceforth known as French Surgeon. He is French. He said that he would be more than willing to operate on my father's tumour, providing that on the 1st of December the tests show that the spot on his liver has either shrunk or not done anything. So, we are praying. The selfish bit of me quite fancies spending the second week of December in Paris!

However, he also says that there is no point in operating on it if the tumour keeps metastisising ("spreading", for us laypeople). It will not prolong his life and would be pointless.

For one optimistic and completely unrealistic moment, I thought, "well, that means that in December or January he can have the surgery. Potentially French Surgeon will get it all out and then our lives will be back to normal. How weird would that be?" Then my mother reminded me that he would have at least 6 months of further post-operative treatment, even in the best possible case.

Ah, whatever. I am fed up of not looking towards any future at all. So even if I make them up, I feel that I am entitled to, as no one can possibly tell me that I am mistaken.

London tomorrow.

As a side note, I have been reading some blogs of people I barely know and am currently feeling better about the rubbish I post on here. At least my grammar is up to scratch!

Friday, 6 November 2009

Having a small attack of the Green Eyed Monster

I'm feeling a little bit resentful today. This is probably an ugly post, so avert your eyes if you want to maintain the illusion that I am a saint.

Ok, still with me? Right, so here goes.

Actually, I would like to precursor this with an introduction:

I was sitting with a friend a few days ago who said that her father had eosophogial cancer and she was reading my blog and ticking things off her list of how she felt, as the process was very similar. I was comforted by this and was really glad to have spoken to her. But here I am about to stray into a problem that most people probably don't have:

I am jealous of my parents. Not the cancer, of course. I am jealous of the fact that they only need to say "go" and tests are done and results obtained. The nurse who did my smear test said it would take 4 weeks and then they would send me the results by post.

I am jealous that my father got authorisation for a blue badge (disabled parking) last week simply because his doctor said so. Ok, so I think that the criteria are weird out here, and I am not saying he does not need one. But why did it take us 3 months, including an aborted trip to an inaccessible GP's surgery to be given the same consideration?

I am jealous because my mother wrote an email to a famous surgeon about my father's case on Wednesday at 7pm and by 8pm had a response from him saying that he would be happy to meet with them. And all because they had had an introduction from a woman whose husband was already a patient of his.

I am jealous because my father does not have to fight for the medication he needs with doctors who don't think that a particular drug is "necessary" and therefore refuse to represcribe it. He gets what he wants and needs without argument. Maybe that's because it's cancer and therefore my dad gets what he wants, when he wants because we may have many years to battle the system after his system has given up.

But, in short, I am jealous of the ease with which my parents seem to be navigating these waters. That's a terrible thing, because I would not wish their situation on anyone, but, on the other hand, it's not like my partner's impairment is a "nice" one which gives her or me all the energy in the world to ring government agencies 20 times a day.

Sometimes I tell Nay, "you know what? Sod the government. Let's throw money at the problem, because that will save us the aggro". But she soldiers on on principle, because it's important that people like us pave the way for people who are less able and less vocal. But sometimes I want to have a friend at the Department of Work and Pensions, at University College Hospital, at JobCentrePlus. Because what I am really jealous of is the grease that has been put my parents' wheels, the fairy dust that makes their passage through this seemingly blessed.

My mother complained that the blue badge was going to take a week to arrive. I laughed, then thought "now you know" and then almost strangled her. Wow, that's really ugly.

So remember, boys and girls, Cancer is not nice. But money and connections help. And always, ALWAYS, remember the poor sod struggling next to you and give him a hand up the step, if you at all can. And if you can't, you can always blame the DWP.

Wednesday, 4 November 2009

Cracks in the Masonry

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:


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!

Monday, 2 November 2009

Wrestling with the Grim Reaper

I am at the airport, blogging from my phone. going back to sunny Israel ( where it is raining, incidentally). and I am thinking over the last few days.

nothing much has happened, bar ending up at two vigils, or memorial services. the first was the vigil against hate crime in trafalgar square. the second was a church service celebrating All Souls Day.

the vigil was sad and celebrated senseless, violent death. the feelings of outrage were palpable and I left feeling that we can do more and should do more to prevent attacks on people simply because they seem different. this is avoidable death.

the church service looked at garden variety death. this is death that may have been violent or preventable but is more often just inevitable and sad. everybody dies. this never ceases to shock me, even though I am unhealthily obsessed with the idea.
so what am I trying to say? if my father dies, should he not be mourned because death is as normal as life? "so it goes", as Kurt vonnegut would say.

more to the point, however, is the question of how we should be facing grief right now. just because no one is dead, does not mean that there is not loss. and the potential for further loss. so I am here, facing Death (and anthropomorphisising it for the purpose of the metaphor) and waiting to see what he will do.

currently, he's just loitering in the corner, watching us. but, like a wild animal, if I take my eyes off him, he may pounce. so I ask him "what are you going to do? do we need to prepare ourselves for the grief that you bring?" but there is no answer. Death has no interest in me, which is, I suppose, the point. He is indifferent to any pain he causes because if it's time, it's time.

am I consoled by this? not really. but is it better to wait for signs that the Grim Reaper is backing out of the room than to deal with simple, stupid grief?

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.

Wednesday, 30 September 2009

There's a spot

My brother called. I have been waiting up for him. He has been in the meeting with my parents and the oncologist for the last 2 1/2 hours or so. He had to leave early to catch a plane home.

So, it's pretty grim. My father had an MRI yesterday "just to check" that there were no spots on his liver, and they found one. One. Usually there are loads, which makes it officially stage 4, inoperable and we are fucked. With one, they can't tell yet. PET scan tomorrow to confirm, if they even can confirm anything. So it might be Stage 4, or not. And the relevant question is now "It took them this long to figure it out!?"

My brother says that my parents don't believe that the spot is cancerous, even though the doctor says that there is a 90% chance that it is. However, so far, this entire thing has been atypical, and not in a good way. If it's stage 4, they won't operate, because it could "anger" the cancer and make it much more aggresive. Personally, I don't care about making it angry. Frankly, I'm angry.

They will be staying in Houston for the next two weeks, in any case, because they want to start him on chemo early next week. I am wondering what the damn point is, if they don't want to operate on it.

So we may well be flying out of here. At least I will have a better internet connection, as I am poaching internet from the flat 3 floors beneath us at the moment.

Now what? My brother says that they will probably be unwilling to operate for at least 8 months. So, as our doctor friend claims, does that mean that we are supposed to go back to normal, just live our lives? Am I supposed to go back to London, fiddle around in the theatre and hope for the best? Or could I possibly be squandering any time that I have remaining with my father? Is this not the time that people later wish that they had had with their parents? I have many things that are unresolved with my father and frankly, I am not entirely sure that we want to resolve them now. It's too soon. He's supposed to have 10 months to decide whether to come to my wedding, and then several more years to figure out his relationship to any potential children we might have. We have never talked about god, or about the damned money, or about what the fuck I am going to do with my life. And I'm not sure we can do it all now.

So now what? Does everything stop while we hold our breaths and pray in vain? Or do I trust that tomorrow will be another day and pretend that today is normal?

Fuck normal.

"I don't even have cancer"

My father is due to meet with the oncologist today. Last night he had another MRI. They are worried that the cancer has spread to his liver, so they just want to check that. Also, my parents are pushing for it to all be done as quickly as possible, so that there cannot be any reason that he can't start treatment as soon as possible.

In the meanwhile, he is in denial. He told my grandmother yesterday that it's all a mistake, the doctors don't know what they are on about and that they've got it wrong. This is confusing her. My mother says that it's ok to let them confuse each other. He's seems to be going through Kubler-Ross in a weird order, but that's fine. I find it all very weird.

I have been scaring myself with internet statistics today, which I am going to stop doing because it makes me want to drop everything and just spend 24/7 with him. I don't know if it's a good or a bad thing that I am thinking that there are now many things that I might have to do this year or not get to do at all. It's scary.

I have ordered my brother to call me at any hour tonight, as soon as they know what they are going to do for treatment.

Also, my grandmother has had a steady stream of visitors since the holiday ended, regardless of whether she wants them or not. I find this intrusive, especially when they are quite happy to say "even if you don't want company, I'm coming over". Great. So she needs to play the hostess and keep everyone else amused, when all she wants to do is watch TV and drink lots of tea. Also, it is beginning to feel very much like a wake, which this blatently isn't, and I am getting annoyed at the thought that people are coming to sit with her for their own selfish, albeit well-meaning, reasons.

Tired of waiting now. Please make something happen. 12 hours until we know something. In the meanwhile, I am going to my other grandparents to help build a sukkah. I have never been in Israel during these holidays. Maybe I will learn something.

Monday, 28 September 2009

Waiting in Israel

It's the Jewish day of Attonement today. All is quiet outside, with no cars, no television, although there are slews of children on bicycles riding around the empty streets.

And we are waiting. I came home to my grandmother yesterday morning, after a very long flight, feeling tired, dirty and anxious. The conversation in the car centred around me telling her the news, but, in the end, the doctor told her, while I sat beside her. He kept talking about "growths" and I have been thinking about the word "cancer" and how people don't say it as if saying it makes the tumour grow.

Because my parents aren't talking to anyone until Wednesday, we are waiting. I am about to apply for a visa waiver for my grandmother to the States, in case we are going to pack everything and go back to Houston. The tired part of me does not really want to do that.

In any case, my grandmother cried, obviously, but since then she has been utterly amazing. About 7 hours after we talked to her, she finally got to speak to my dad. She had been saying that she doesn't trust the doctors, that they have been wrong all this time and that she can't lose her son in the same way she lost her brother. Then, on the phone to my father, she said "I can feel in my heart that we are going to beat this. I just know it. And you are getting the best care in the world". And, at that moment, I thought, when I grow up, I want to be just like her. When the moment of truth came, she stepped up and consoled her son in a way only a mother can, putting all her doubts and fears aside to tell him that everything will be alright. And I love her for that more than I can possibly say. This 80 year old woman is my hero and I will be pleased if I can get through this with half as much grace and courage that she is showing.

So we are waiting. We are watching DVDs to pass the time until the television comes back on, but we have had a steady stream of guests. My dad's cousin lives nearby, and she has been with us for a good chunk of the last two days.

People sometimes think that my family is odd, because we are so closely knit and seem to be in each others affairs a lot. But now I know how to answer them. In times of crisis, it is my type of family that survives. Because we will move heaven and earth for each other and never let the support flag.


Saturday, 26 September 2009

Off to tell Gran

I am flying out of Houston in a couple of hours to fly to Israel to break the news to my grandmother. I am taking an oncologist with me. Ok, not quite like that, but the way it works is that this guy, a friend of my parents, has been here all along and is now going back to Israel and will come with me to my grandmother. My role, for the next week or so, is to keep her calm and busy until my parents meet with the doctor who will be coordinating my father's treatment. Only then will he decide whether we are coming on a plane to Houston (oh the fun of transatlantic travel) or if they are coming to Israel.

In the meanwhile, my brother has arrived in Houston and the other one will be arriving today. They are not alone, so, as much as it loathes me to leave, my task lies elsewhere.

Luckily, I will not have to do the talking. My job is hand-holding and hugging. And then keeping busy until Wednesday. When I told my grandmother I was coming, she was utterly thrilled, but this will not last long. My job will also be to check that she is physically alright after we tell her. She is 80 years old and healthy, but still, 80 is 80.

I will take her to the theatre, and opera, and restaurant, and I will have to let her buy me clothes, which I despise. But before it sounds like self-pitying martyrdom, I need to point out that I love her very much and this is the next best thing to being with my parents. And, either way, I will be seeing them before the end of next week anyway.

The show opens again this afternoon. I will be on an airplane. C'est la vie.

Friday, 25 September 2009

Journey starts here

I am starting this blog because it is important for me to write stuff down as it comes. I have a feeling these are going to be a tough few months. A friend a few days ago commented "This seems to be many people's annus horribilis." Fair enough.

The gist is that my father has just been diagnosed with pancreatic cancer. He has been having problems in that area for a while now and had scans done in June and then in August. He has a condition called pancreatic divisium, which is completely harmless. Except when it isn't. The point is that the doctors thought that it was chronic pancreatitis, except one doctor, with whom the whole thing didn't sit right. So he talked to another doctor. An oncologist. And he looked at the scans and said "I think I see something here". So my parents trekked back to Houston, with me in tow this time, and yesterday he had another endoscopy to take a biopsy.

The doctor was slightly shocked. My father is in the completely wrong demographic for this (except for being in the same age bracket as Patrick Swayze). He is young, healthy, strong, and so there is a belief somewhere that he has a good chance. Problem is that, worldwide, pancreatic cancer has a survival rate of 5%. At MD Anderson, the cancer hospital, these odds are 27%, hence the title of the blog. My brother says "that's 27% of crap", but it's what we have to hang on to right now.

I have been supporting my mother and my father over the last couple of days. Badly. I have gone and caught a cold (I blame the air conditioning in this stupid country). However, I think that my next job is going to be going to Israel to bring over my grandmother, who is blissfully ignorant right now. It's going to be a relief not to have to lie to her, but I don't envy her future position in any way.

In any case, this is a blog to chart our progress through treatment (of which we know nothing right now) through the weirdness and to keep friends updated as to what's going on, in case anyone cares. It sounds like the treatment will take six months, although we really don't know right now. Some of this blog will be medical jargon (as far as I understand it), some of it will be just thoughts.

I'm OK, although I am not really sleeping and I feel like I am jet-lagged all the time. In the meanwhile, I have a show that I am supposed to be running. Luckily, I trust my team to get on with it. I know that I was looking to take a break, but this was not really what I had in mind!