What kind of week has it been

I have been meaning to update because this is a crucial time. However, I have not had the heart to do it, even though there is plenty to say.

My dad is still with us, albeit just barely. He had a couple of good days at the beginning of the week. He would get up, sit with people, and, although he was not really with it a lot of the time, he was responsive. A few days ago, however, he crawled into bed and hasn't really been up since.

We moved my father's bedroom downstairs on Thursday. Basically, the house is all staircases and it involved two flights to get up to my parents' bedroom. Also, the bedroom is dark and not very friendly. We got a lot of medical and mobility equipment from a wonderful charity in Israel that lends stuff out for free. Wheelchair, oxygen tank, toilet chair, urine bottle, etc. We also managed to blag a hospital bed very quickly and we put it all in the room that looks out over the pool. It's bright and nice to sit in and my father likes to spend time there. The bathroom is very near and we adapted it into a makeshift wetroom. We rearranged the furniture so that it's a bit like a studio flat now. There is a seating area, a dining area and, of course, the bed, with an air mattress that prevents bed sores. Every evening we bring the fold-up bed in for my mother and she stays with him. I feel as though this is a happier place to be, although there was some opposition to the idea, mostly because certain members of my family believed that this was a statement of defeat that would not encourage him to move around.

Yesterday my father got out of bed only twice to go to the toilet and otherwise mostly slept. His oncologist says that, in the best case scenario, he will simply sleep more and more until he doesn't wake up anymore. He has had trouble breathing over the last 24 hours, although our Doctor Friend says that his lungs are clear. Mostly, his liver is enlarged and is pushing on the rest of his organs in his abdomen.

Weirdly, in the little time that he spent awake yesterday he seems to have been much more lucid than previously, and, although he only said about 2 words, he often winks at me.

Doctor Friend says that he can't put a time limit on it. Consulting Oncologist says 7-10 days, although he is in America and can't see him.

I had a fright a couple of days ago when I was on the phone and suddenly heard my mum sobbing uncontrollably downstairs. I ran down to find her hugging my brother so I rushed down further to check on my father. He was there, happily sleeping, but, at that moment, I believed there to be a real chance that the end had come. And I realised that I wasn't ready. Not at that moment, not completely randomly and without notice.

Another vignette was yesterday, when my mother voiced what has been plaguing me for months: we all die alone. The thing that has upset me more than anything else in the last 2 years has been the thought that he would die alone and afraid. I don't know if he has found some peace in recent days or that he is just too tired to be afraid anymore, or maybe he is still very scared. I think, though, that maybe without fear it is not so bad to be alone, as we all are. But there is nothing any of us can do to help that.

There are moments of laughter, some totally inappropriate, but each member of my family is coping in different ways. My grandmother is more or less falling to pieces, which is probably justified. My brother has been unbelievably angry at everything. It is his birthday today and he resents the shit out of it, because he doesn't believe he has any right to celebrate and got angry at his wife for organising a small party. If I had one prayer, it would be for my father to get through today, if only to spare my brother feeling as though he had in some way contributed to his death by daring to be born on the 18th December.

Littlest brother and I are playing a lot of computer games to keep us busy, although I do have a lot of work to do but no concentration to do it.

My mother knows that she is keeping it together (mostly) right now, but can't possibly vouch for how she will be after the funeral.

I honestly don't know how I feel. I don't feel as though I am in denial about anything and I am keeping it together for everybody's sake, including my own. I don't feel as though I regret not having more time with my dad, or that I needed to say something really important to him before he dies. He knows that I love him. I tell him every day and he winks at me. Maybe that is why I don't feel as though he is afraid. He winks, and that wink is for me.

Together again

I won't go into the details about how I ended up on Israel a full week early. Suffice to say that I am here and that my brothers flew in with my parents, one from Houston and the other joining them in Geneva.

We went to pick my parents up from the airport last night. I didn't entirely know what to expect, so I tried not to expect anything. So the report? His jaundice is quite bad, and he has trouble walking. The biggest problems (if you can call them that) on a day-to-day basis are his cognitive problems. He doesn't know where he is going, he forgets what he is doing after a few seconds and he is talking entirely without reason. Sometimes I think the words that he is saying are not the words that he means, but sometimes he is honestly just talking crap. In his better moments he gets very angry and the reason they got in so late last night is because he absolutely refused to get on the plane. Later he refused to get out of the car (while all the while talking to my brother as if he was an employee of the airport) and then he cried going upstairs to bed. All of these things form a pattern for me that he believes that this is the last time he will be doing any of these things. He knows, if only subconsciously, that he has come home to die. Smart man.

In the meantime, it's quite group effort to handle him all the time. Trying patiently to convince him to do anything is a full-time job, so we take turns, depending on what the situation is. He is still very angry, so we tend to tag-team him, so when he gets mad at one of us, the next one can jump in.

He looks a bit better this morning and is not completely off his head, but we will have to look at what the next few days will bring. I will probably be updating here fairly regularly, as I am going to be in Israel for the foreseeable future.

It is at times like this that I am grateful that I have a close-knit, supportive family. We truly are all in it together and will pull together to try to make this as painless as possible.

Today I am sad

It's hit me like a ton of bricks. I'm in Israel and I am caring for everyone. My mum has done her back in, so I am driving her around, ensuring that she can sit down and get back up again. It would be funny if it weren't so detrimental to my family's general wellbeing. 

But let's talk about my grandfather for a moment. Repeat. The following is about my grandfather. After his diagnosis last month, he immediately started Gemzar to see whether this would slow down the progression. After about 2 weeks of hideous side effects and not being able to get out of bed due to exhaustion, they went back to the hospital to be re-staged. In that short space of time, his markers had skyrocketed, his liver began to shut down and the cancer was spreading like wildfire.

So they sent him home. My mother and her brothers are arranging for palliative home care and he seems almost relieved that it will all be over soon. My brother has flown in from Canada to see him because I told him that we are talking about weeks now, rather than months. And I need to fly back to the UK today.

My father, on the other hand, is doing fine. He is still collecting fluid in his abdomen, but we think that we might have kicked the infection that has been plaguing him for the last 4 months. He is on what we would call "stabilising" chemo, which means that he is not supposed to be improving, but not supposed to be getting worse for the time being until my parents head back to Houston.

So, to recap, my mother can't function properly in any capacity because she needs help getting in and out of chairs, my grandfather is dying very fast and my father is complaining that no one is paying enough attention to him.

And I am sad. I have been trying to put my finger on it. It's not that I feel a sense of injustice, although it is unfair and stupid. I think it's more that I am so emotionally exhausted from dealing with my father's illness for almost 2 years that I don't have anything left to give to anyone else. My cousin is taking my grandfather's illness very hard. In many ways, I wish I could to. Because right now I don't feel like I am giving him the respect he deserves and I doubt I will be able to grieve him properly. Because I am all cancer-ed out. I have become cynical and hard and that makes me sad.

So I am leaving here now and might be back fairly soon to try to fit in more visits before my grandfather dies. Because, even though my father doesn't understand this, funerals less useful to me than sitting with someone and chatting while they are still alive.

It's hitting the fan right now

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

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

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

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

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

It's going to be a long road ahead

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

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

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

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

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

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

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

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

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

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? :-)

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.

"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.