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Last post for now

2012-01-07T07:34:00.001Z

So I am at Geneva airport on my way home. We flew in on Tuesday to begin to sort out my father's estate. It felt very good to get out of Israel and out of the house on which he died. When I arrived in Israel, I wandered into his bedroom and saw a massive digital clock that he spent ages haggling over and buying in Thailand. First I groaned at the memory of us standing at a market stall and him taking an hour to negotiate a deal over an item that cost less than a meal out. Then I saw him, in my mind's eye, lying in bed, virtually blind without his glasses, looking at the large digits on the clock and thinking : that's better. And it made me smile. And all the small things in the house that he bought and brought and considered and loved I suddenly loved too and I thought, you mad mad amazing ridiculous man.

We have been trying to work out what to put on his gravestone. It's not easy because his father's inscription is just above it and we need something that is similar, personal to him and yet doesn't eclipse his memory. This is still a work on progress, but we need to have it done soon and definitely before I head back in February for the stone laying service. This is strictly supposed to be 30 days after the death, but Jewish law is surprisingly flexible on this point.

Small story which probably won't make sense to anyone but me, but I wanted to write it down to remember it. Many years ago, there was a television ad in Israel for McDonald's. It was advertising their new flamegrilled burger or something. It featured an Indian guy recalling that his grandfather walked on hot coals and his father walked on hot coals. When his father approached him to follow in the same vein, he said "Abi Babbi, are you crazy? I only walk on hot coals at McDonald's!" Abi Babbi is a bizarre bastardisation of the Hebrew word for father (abba). I took to calling my father Abi Babbi and he thought it was hilarous. So it stuck. I called him that on his death bed. If all things were equal and I didn't have to consider anyone else, I would write the following on my father's grave: "Abi Babbi walked on hot coals".

So that's it. Unless I feel the need to post again, this blog has fulfilled it's orginal purpose. It kept people updated about what was going on and of our journey. That journey is now ended. Obviously, we all remain and I hope to go back to work soon. But this chapter is closing. If my writing has been of any use to anyone, I am glad. It definitely was to me. Thanks for listening. It helped.

Horribleness after the fact

2011-12-29T03:16:00.003Z

So we are in the 4th day of the Shiva now, out of 7. The funeral was pretty horrendous, although it was no worse than I expected. My father trained us all very well, with years of going to my grandfather's memorial service. Going to the cemetery, meeting all the friends and family, the graveside, all of this was familiar territory and felt unsettlingly comfortable (if that is not an oxymoron). The only part that was different was the short service in the funerary building and the presence of the body, which was then interred.

We were supposed to start at 1pm, and at 1:40 I asked my brother what the hold up was. "They're still digging", he said. You see, my father's final wish was to be buried in the same plot as his father, which meant digging up that grave. So, at almost 2pm, when we all bundled into the building and still nothing happened, I asked what the delay was again. My brother said, "it's taking longer to dig through, because your father filled the grave with concrete". My mother and I looked at each other. We were both thinking the same thing. My father buried my grandfather and then covered the grave with concrete to prevent what? His escape? Body snatchers? We started laughing hysterically, in the funeral building, with everyone around us, and we couldn't stop. While we were laughing and crying, the funeral finally got under way.

My father looked very small under the shroud that he was wrapped in and again, that's probably one of the memories that I would prefer to delete from my brain. My brother is having a problem that people keep coming up to him and asking "did your father suffer at all?" I suggested to him that he should answer "Terribly", which would shut them up. Word of advice to anyone comforting people who are bereaved: this is not an appropriate question and one that simply causes a world of pain for the family, regardless of whether the person suffered or not. It causes us to have to focus on those last moments, those hideous snatches of time that we would rather forget as quickly as possible, because they are not indicative of the rest of our father's life. He was so much more, and we would like to be able to start to see his life as a whole, rather than only being able to see the last few weeks.

Again, the burial is something that I would rather forget, so I will not post about it. My grandmother insisted on waiting for everyone to have finished before putting her flowers on the grave. I had wandered off and was talking to some people when, out of the corner of my eye, I saw my grandmother fall. I ran over as my brother's helped her to sit down. At that moment, although I don't believe that people can die from a broken heart, I believed that it was happening. My brother asked my grandmother later what was going on. She said "for a moment, I thought I was dying. And you know what? It wasn't so bad". However, I can't go through this misery more often than every decade or so, so I need my grandmother to remain healthy and happy.

Since the funeral, we have been sitting Shiva. Don't know if I need to explain this, but, under Jewish law, the family sits for 7 days and people visit them to condole with them. All a lovely thought and very healthy for grieving and so forth, but there are a few problems. Firstly, we have a lot of people coming that we haven't seen in years or that I don't know at all. It is hard to sit and talk to them, especially when it turns out that the relationship between them and your family member was not all rosy. For instance, yesterday, an old teacher of my father turned up. She said that my father was dyslexic (we all knew that) but also that he was disruptive and a pain in the backside. My grandmother almost punched her. But we have no control over who comes through the door. The next problem is that we don't have any control over what time these people come. They can come at any hour of day or night. So they start at around 10am and don't leave until after 10pm. Between the hours of 1pm and 3pm we are supposed to eat, and sometimes we have a short reprieve. But mostly we eat in shifts, with the people not eating sitting with the guests. Another problem is that we don't get any time for ourselves. We have plenty of stuff to work through, but we are only able to snatch little moments of time between people who ask us if he suffered. We need time for the family and, further, we need time to ourselves. I am so peopled out that it is unreal. This is the only time of day that I get to myself. So I am going to do some more land law and wait for the sun to rise.

The end of waiting

2011-12-25T23:03:00.002Z

Many of my posts have been tagged with "waiting". Well, the wait is over. My father died at 6 o'clock this evening. We were all with him and, despite some tricky moments, it was mostly peaceful. It's 1am as I am writing this and I do actually have plenty of time because my brother and I are taking shifts looking in on my mum every hour.

This last week saw a swift decline in my father's condition. He didn't get out of bed for most of it and, for the last three days or so, he was mostly unable to communicate. I started with quiet yeses and nos, then went down to nods, and eventually we were trying to guess whether a small movement in his eyes was assent. However, the brain fog completely lifted and we believe that he was aware until the end.

I won't go into the details of everything that happened tonight. I was sent to a nearby hospital to pick up morphine to help my father's pain. I was just about to raise holy hell because they wouldn't give it to me when my mother called and said to come home right now because we had run out of time. I got back about 30 minutes before he died and despite the fact that I saw things that I really wish I could unsee, it was worth it. We didn't need the morphine, in any case.

There are so many thoughts, so many worries, so much misery, that I don't really know how to arrange it all in a coherent form. This will not be my last post. In Jewish tradition we sit for seven days now, as a family, and are visited by people wanting to be with us. Obviously, this is after the funeral, which is tomorrow. Trying to get the undertakers to do their jobs was bloody difficult, as they close up shop at 4pm and don't reopen until 9 the next morning. But apparently, if you grease enough palms, you can get things to happen outside of those "work" hours.

Basically, what I was trying to say, before I got sidetracked, was that I have seven days in which to try to work out what I am thinking and feeling. My overwhelming thought for most of today was that people tell you that certain things in life are hard. Final exams, planning a wedding, loving your neighbour, that kind of thing. Many of those things I have hunkered down on and come out thinking "ok, that wasn't so bad". This is absolutely as hard and bad as they say. I can't overstate how difficult the last few days have been, and I don't mean sad or worrying, I mean difficult. There have been things I desperately did not want to do, such as say goodbye to my father, watch how the ambulance took him away or calling people to tell them the news that nevertheless had to be done. And so I did, and we did. I have been far from perfect in behaviour, but I need to allow myself that. To be fair, no one in this house has been exemplary this week. We all wanted to punch someone at some point.

I will start with one story from tonight. Only one and then I will try to rest a bit. After my father died, we sat in his room, all together. At some point the blanket was pulled over his face, a big duvet that kept him warm for a week. I simply couldn't bear the idea that he had his face covered, for the illogical, insane reason that I was worried that he couldn't see us and would be scared. Or that he wouldn't be able to breathe. Or something.

I won't tell you about what my family are doing, because it is not for me to make their business public. I will stick to myself, but only tell you that everyone is hurting and everyone is exhausted. A light has gone out of our lives. And I can literally feel the hole that he has left in my heart.

What kind of week has it been

2011-12-18T04:28:00.002Z

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

2011-12-11T06:58:00.002Z

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.

Passing the Time

2011-11-28T12:28:00.002Z

My parents are hoping to be back in Israel at the beginning of next week, once my father has begun the new cocktail of drugs (flogging a dead horse, anyone?). After that, my classes finish on the 15th and I should really be booking tickets. The question was when I should book a ticket back to the UK. My mother suggests that I should see my father before deciding on when I should head back. The implication is that he is not in a good way and I will need to decide whether to stay for the foreseeable future.

Sensible Brother and I have been talking about "after", a pretty transparent euphemism for "when my father dies". Mostly we have been talking about his worries and concerns, some of which are legitimate and some of which are unfounded but worrying nonetheless.

What has been interesting is the way in which the death of a parent forces you to grow up. Obviously, having lived away from my parents for a decade, I don't turn to them every time I have a sniffle or a lightbulb blows in my bathroom. But I do ring them if I need advice, if I am out of my depth or if it seems that there is something they should know. My brother is slightly more dependent, but that is mostly by choice. My father, cryptic man that he is, has a tendency to give advice that seems to have little foundation. When asked why he does things the way he does, he responds with "one day you will understand". My brother worries that he will live his whole life by the rules set down by my father, only to realise on his own deathbed, that he never did understand and simply followed the instructions doggedly, waiting for the answer to become clear. I explained to him that part of being an adult is learning to find your own answers and to evaluate the information that you are given against your own experience and against expert advise. If he is not sure about something, he could ask a lawyer, accountant, doctor, etc. Part of growing up is realising that your parents are people and do not have all the answers, as much as they might present themselves as though they do. But it is hard to digest the idea that someone you may have relied upon to have an answer will no longer be there, whether their answers are good or not.

I have been reading back over my posts and I can see how far we have all come on this god forsaken journey. As much as we will all have learnt and understood, my father will still be dead, and wisdom is little consolation for that.

Happy news is thin on the ground these days and will probably continue to be for the next few weeks. I regret to report that we are coming to the end of this war. All I can hope for is to keep my chin up and remember that life always kills you in the end.

The long and winding road

2011-11-24T11:28:00.001Z

So my father's MRI scan shows that the tumours are spreading and are now completely blocking his bile ducts. This is bad. Basically, the doctor says that blocked bile ducts are "negative to life" , which I thought was a charming way to put things.

The new plan is to try a couple of types of treatment, but basically we are at the "prolonging life" stage of things. They are hopefully going to release my parents to Israel next week.

This is the final battle and my father is going to go out guns blazing. What does this mean for me? I am trying not to worry about the possibilty of missing the last few precious weeks with him and I will go as soon as I am sure that it's the right time. go

I had a momentary "bad" thought when I was told that they are going to continue treatment: "why won't the just let him die in peace?" This is a deeply selfish thought, but not necessarily one that I want to disown on that ground. Whose time are we buying and for what purpose? I am worried about the pain that my father might suffer, having seen my grandfather's pain a short time ago. I want us to be able to say that it was not a mistake to fight to the bitter end and that it was not sheer bloody mindedness that ultimately caused him more suffering, merely because we weren't ready to let him go. There is no question about him: he will never be ready to go and will leave this life as he came in, kicking and screaming. But maybe this is the wrong tack to take. Maybe it is less important to worry about how we will look back on this time and more important to try and make the best of now. We will all feel guilty about certain things that we did or didn't do, eventually, but, hopefully, we will remember what it was like here, in this moment. But I am ready to turn back the clock now. I don't really fancy coping anymore and would really like to go back to a time pre-cancer, pre-blog and pre- questioning every action in case it's the last.I'm ready. I keep seeing images of the Trojan war in my head. Achilles, Hector, Ajax, fighting a war they knew would kill them. Bring it on, bitches. We shall fucking overcome.

There is a reason I shouldn't make plans

2011-10-28T12:52:00.003+01:00

I broke my own rule and now I am paying for it. Actually, lets start from the top, seeing as I failed to post anything when stuff happened.

First, my grandfather died, as we knew he would. I was in Eastbourne at the time, doing some work experience, but had tickets booked for Israel anyway, so off I went, about 3 days into the Shiva. I knew when I left Israel that it would be the last time I saw him, and I still don't have any regrets about that. Who knows, though, they might catch up with me. My biggest problems continues to be that I keep worrying that I am not taking advantage of the opportunities when they arise. However, I am learning that sometimes opportunities are there to be missed.

The short version of the story is that my father had another infection when they arrived in Houston. His haemoglobin is very low and his ammonia is very high. The doctors reckon that he his leaking blood from somewhere, because it doesn't seem to matter how much protein he eats or how much blood he receives, the haemoglobin doesn't rise. The oncologist described it as "like having a wheel on a car with a very tiny puncture that the mechanic can't find". The mechanic is him and his colleagues and at this point, their best advice is "just keep pumping up the air" i.e. the blood.

The problem is that he hasn't had any treatment for the cancer for weeks. And every time he has not been in treatment in the past, he has gotten stronger and sorted out his other health problems in preparation for another round of chemo/radiation/whatever. This time that hasn't happened. He has not gotten stronger, he has not bounced back and the doctors are not willing to treat his tumour when his body is so weak. And they are not seeing it improving.

So, in short, they are foreseeing treating his secondary symptoms but being unable to do anything about the tumour/s (there are many in his lungs that are becoming an increasing concern) for the foreseeable future. Now, I don't believe in miracles, and we all have to look at this realistically, so that our lives don't fall apart. Without treatment, the tumour will run rampant and we know what happens then. Obviously.

My brother reckons we shouldn't make any plans for Christmas (actually, he thinks we shouldn't make any plans for Thanksgiving, but I didn't have any anyway, so let's move on). My mum thinks that if anyone got pregnant at this point, my father would still not live to see a grandchild, but no one can say for certain, obviously. So I have a Devil's Timescale here, which makes it difficult to do anything.

So, things I didn't do in these last couple of months:

1. Be there when my grandfather died (horribly, I might add. From what I understand, it was quite hideous and he only stopped being in intense pain when they moved him to a hospice, less than 24 hours before he died. He didn't like the hospice either, but at least they could control his pain a bit).

2. See my parents for between the beginning of September and the end of October.

3. Get a job

4. Make any commitments that "my father is dying" wouldn't get me out of.

Things I did do:

1. Started a law GDL. Good for me and all that. It's hard work and I am getting seriously invested in it personally. Which isn't to say I can't easily drop out, but I would be miffed.

2. Got accepted onto a pro bono clinic. We have clients, who are real people, who really need our help. Not turning up would be frowned upon in more than one way.

3. Signed up to volunteer with an organisation. I can still back out at this point, but I have been waiting a year for the training.

4. Signed up for Mooting. Right now, that, again, is not a big deal, but it will be if I register properly.

As you can see, the Devil's Timescale makes it difficult to know what to do with all these things. If we are talking about 3 weeks, I should drop everything now. I will get my money back for part of the course (I think) and upset the pro-bono people, and I will have to start again next year, but that's the way it goes.

If it's 9 months then I will have finished the course but be doing summer work experience or something. Less of a concern.

If it's anything between now and six months from now and I don't know where, I will have to pray that they don't chuck me off the course and anything else I am doing.

So here is where I broke my rule. The rule is: DON'T MAKE ANY PLANS THAT MIGHT INVOLVE LETTING SOMEONE DOWN. I successfully did that for over a year and then I broke it big time by trying to grab the opportunities that came out of my course. Idiot. I should have let them pass me by. It hurts on a professional level, but personally it makes things easier.

But wow, look at me. I managed to whine about my commitments for a whole post and didn't stop to consider the important questions for a moment.

Should I drop everything (again) and spend all the time with my parents, bearing in mind I did that last year?

If not right now, when is the right time to call it? I don't have a holiday from my course now for another 6 weeks.

Should I quit my course now, before I get too invested, on the assumption that I will fail it on attendance anyway at some point, and at least now I will get my money back?

Are there any people whose needs are more important than mine right now? What is best for my parents/partner/grandmother/brothers?

I told some huge lies of omission to my grandmother last night. She had been ringing since mid-afternoon and my mother had been ignoring her and it was obvious that she wasn't going to go to bed before talking to one of us. So I was tasked. Side note: I should really have word with my mother about making me do her dirty work. It's not fair to sour my relationships with people because she doesn't have the energy to do it herself. If she calls someone with bad news, they understand. If I do it, I'm just cruel. This must stop. OK, back to our programme. I rang my grandmother and told her about my father's trip to the dentist, that he has been eating like a hellhound, and that he was in a fairly good mood. I failed to tell her about the unscheduled meeting with the oncologist and that his markers are at 20000. Luckily, she doesn't know how to get online, so I am safe. But I felt shitty about that. She needs to know eventually, even though she often makes things 1000 times worse than they were before we told her.

So there it is, incoherent, messy and unstructured, much like life. On the other hand, my law notes are beautifully organised. FML.

Today I am sad

2011-08-10T14:36:00.004+01:00

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.

When it rains it pours

2011-07-20T12:13:00.002+01:00

Sorry I have been absent for a bit. Basically here's the update:

We explained to my father very patiently that we were worried about his neurological symptoms. The walking funny, the non-repsonsive limbs, the talking in his sleep (which was making my mother completely crazy) and the lack of mental clarity. Eventually, we managed to convince him to get looked at a by a neuro-psychiatrist and have a couple of tests done. The next morning, as if by magic, his psychological condition massively improved. He was walking straight and confidently, he was talking sense and he was keen to go to work (literally, in the office and everything). He has more or less remained that way through the start of his new Chemo treatment (every two week, 4 courses, can be taken anywhere so long as it's in a hospital). They have also hired a new nurse who will start this week, I think. The only noticeable side effect of the new drug is that he is very tired and sleeps for many hours a day. I will let you know what happens with that.

Everything looked like it was ok, so I went home.

Two days later my mum rang. My grandfather (mum's dad) had rung earlier in the week, while I was still with them, to say that he was feeling very run down and so had gone for tests. What she was ringing to tell me was that his tests had come back showing that his body is utterly riddled with cancer. The irony is that there is a fairly good chance that it started off as pancreatic and then metastisised. One idiot doctor has given him 3 months. Maybe it is.

So I spoke to my grandfather yesterday and he seems very blasé about everything, which either means that he is the most Zen person on earth or he is in deep denial. I couldn't possibly guess. I am not as close to my grandfather as I am to other members of my family, which is probably what causes me to be most worried about my mother in all this. She now has both a father and a husband who are dying of cancer and my father's only comment is: "Well maybe you should start to think about what it is you are being punished for". Nice.

Still getting my head around everything. Will let you know how that works out for me.

Bumping into the wall

2011-07-05T22:54:00.001+01:00

So I find myself at the hospital again. My father was discharged on Friday but we are back. And here's why: On our way to a run of the mill blood test, my father started walking wonky. He spine was totally bent favouring his left side and what was weird about it was that he couldn't tell that he wasn't straight. He was almost falling over and bumped into the wall several times. His oncologists told us to take him to the Emergency Centre.

So he's currently having a CT on his brain and we have absolutely no idea what is going on. My gut feeling is a mini stroke, but who knows. What is slightly funny about it is that my father is not afraid of his symptoms. He would rather have gone out lunch than be checked out. What he is afraid of is having to be in hospital again. Because that's where they hurt him. That's where there are unconcerned strangers who poke and prod him and that's where he gets bad news.

No idea what is actually going on with him, so allow me to wait and see. Don't we always?

Back to Houston

2011-07-03T13:32:00.001+01:00

So I am back at the airport and on my way back to my parents.

Funnily enough, we are experiencing a repeat of what I talked about in March. My father has had more fluid taken out of his abdomen and is still down and out with the mystery infection that he can't seem to kick. There are various theories as to what could be going on, including a possible parasite. But we have to wait to find out.

In the meanwhile, though, I am hoping that my advice is going to finally be taken and my father will get a brain scan. Why? Because his mental state has been fairly rapidly deteriorating over the past month or so and I don't think that merely stress can account for it. He doesn't know how to do simple tasks most days, he forgets words and his memory is shot. The symptoms seem quite similar to dementia, but obviously, with the speed at which the decline has occurred, something else must be going on.

And his cognitive problems are part of the reason I am on my way there again. The second is that, in about April, my parental hired a nurse to keep an eye on my dad, give him medication and just be around when my mum needed a break. He was wonderful, but unfortunately his father got unwell and he had to leave. So my mum became the sole carer again. Sucks.

And it's hard. It's hard when my father thinks he's fine and starts talking utter crap to work colleagues (potentially an expensive problem). It's hard when he is in hospital the whole week and my mum has no one to relieve her for a couple of hours so that she can go and have a shower and change clothes. It's hard when everyone is far away and there is no one they can call if the shit hits the fan. So I go, and I just wish I could stay without reprecussions in my own life.

I wonder if my mum ever has time to sit and wonder about where her life has taken her. She has now spent almost two years doing nothing but caring for a man that is increasingly less able to be independent. I am not suggesting that she is either a saint or a fool, only that it would seem very odd to me. Then again, if I look at where I have ended up, I wouldn't have dreamed such a thing. Again, not in a bad way. Just unexpected.

Must check what my flight is up to.

More soon, I promise.

"I wanna go home!"

2011-03-18T14:08:00.003Z

Not me, actually, but rather my father, who is getting some cabin fever after having been here for 5 days. I am sitting in the corner of the hospital room and my father is struggling into a t-shirt. He doesn't want to get up and move around but he still wants to be released. And then he wants to go to the office on Monday. And then he wants to fly to Geneva next week. He's on antibiotics for the next two weeks, so we might be able to convince him to stay put.

So, where are we today? They extracted 3 litres of fluid from his abdomen but he is still incredibly bloated (like pregnant bloated). The initial tests show a high number of white blood cells in the fluid, which suggests the presence of an infection (possibly now gone). This is good, believe it or not, because it means that he could be feeling so crappy due to the infection rather than because he is dying.

However, an ultrasound yesterday revealed that his portal vein is partially blocked, which means that this is going to keep happening if they don't find a way to solve it: he will keep retaining fluid and losing albumin and feeling crappy. We have to wait for his regular oncologist to come back from holiday to investigate options. It's not a very good state to be in,though, so we are waiting to find out what will be going on.

Further, we are waiting to hear about what else they find in the fluid from his abdomen. They are looking for cancer cells, which would be the equivalent of a further metastasis. This would be bad. Worse, in fact, than the other stuff. So we wait, again.

I keep trying to fly home. It was supposed to be Wednesday. Then it was Friday. Now it's Saturday. But we are waiting for my father to be released from the damn hospital. I also have a deal with him that he will cooperate with the nurse that they are hiring in to help and do his best to get some exercise, as it make him feel better. I am writing it here as a testament that we made this deal, because he promised. His health depends on this.

I really didn't miss the hospital

2011-03-16T19:55:00.001Z

I am writing this on my phone in one of the public areas of MD Anderson. My parents were in Bangkok and had to fly back as a matter of urgency. Why? Because in the space of a week my father's test results tanked. He had very low haemoglobin, albumin, and other bad things and was sleeping 20 hours a day.

So off they flew for 26 hours, picking me up in London on the way. We drove straight to the ER on arrival and, after 8 hours and 3 tests, my father was admitted and has been there ever since (monday).

He has multiple system dysfunction which is causing pain, fatigue, confusion and a scary amount of fluid to build up in his abdomen. The question, though, is why.

We have now had opinions from 4 oncologists. 1 believes that it's a blockage of his portal vein. This is problematic and potentially serious but not time critical or cancer-related. Doctor 2 is hoping that it was an infection in the fluid which will go away now that he is on antibiotics. Doctor 3 thinks it's the cancer that is spreading to his spleen and that he could do everyone a favour by dying faster and not wasting anymore time and resources. Doctor 4 thinks patients are idiots and should only be interested in treating the symptoms rather than the problem. Overall, I am thinking of taking a sledgehammer to the lot of them.

He's had the fluid drained as is feeling a bit better, but he will be staying in hospital until they bloody find the cause of the problem. In the meanwhile, the tumour is acting oddly in that it is changing shape and no one knows why. His brain is clear, which is nice to know.

And, oddly, what I have noticed most over the last few days are the number of child patients kicking around the hospital. Now, cancer is horrible at any age but to see patents with their 5 year-olds waiting in radiation is one of the most heartbreaking things I can imagine. Sod pancreatic cancer. It's the cancers that kill children that we need to eliminate as quickly as possible. Because right now, there is no justice in this world.

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long time no see!

2011-01-11T12:07:00.001Z

It's been a while since I blogged and some people started thinking that maybe it was all over. Well it isn't. Things have been moving and changing and I have spent the last three months or so running between Israel, Geneva, Houston and home. I am currently on a severely delayed flight to Tel Aviv, only 5 days after landing back in the UK.

So, where are we? The surgery in May went by the book and the.doctors were dead pleased. Then, a couple of months later, my father's markers shot up and a tumour in his liver was confirmed. He also has growths in his lungs, but we are not supposed to worry about that.

So, oddly, he has pancreatic cancer but not in his pancreas. He.is getting various types of chemotherapy and his markers have since dropped massively, which is good, but our only hope at the moment is for the tumour to shrink enough to ablate it.

In the meanwhile, we are pleased that my father has made it to 15 months since diagnosis, although that means nothing without effective treatment. He has gotten weaker, he gets very tired and is often confused. This is not a problem for me most of the time, but other people find this very difficult. In many ways, he is not the man he was, although in other ways he is even more the man he was. Overall, though, it feels like the slog is long and we just have to bear it.

In about October, I realised that if I wanted to spend time with my parents (and my mother REALLY needs support) I would have to make some changes in my life. I could not be counted on to take responsibility for anything, so I gave up my remaining commitments. I can't get a job, because I would not be around for long enough to start it. So I have been volunteering a lot and am considering some distance learning. But yes, my life is interrupted. I do not resent my family for it, but it would be nice to end the hiatus. But for now, I will do this. Let's see how it goes.

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They think it's all over

2010-04-29T23:08:00.003+01:00

First blog in a while, but I am sitting at in the hospital while my father has just been taken from surgery to recovery. At 8am this morning he had a Whipple procedure and 40% of his pancreas was removed, along with 30% of his stomach. The surgeons consider the surgery to have been a success and they believe that they have removed the whole tumour. We will have to wait for another week to get the pathology results from the lab, but it is all looking very good and my father is now expected to make a full recovery.

It will take a while for my father to recover (and he's going to be on nil by mouth for up to a week- nice) but it seems that he is out of the woods for the moment. We still need to wait for the pathology report, but there is good reason to be cheerful.

After all that, it seems a bit of a let down, really. I feel that we at least deserve a medal. Instead my father gets to live another day. Just like before the cancer. Of course people got faced with their own mortality and some of us reassessed our lives and life will never be exactly the same. But it feels too much the same for my comfort. Does defeated cancer really leave a lasting impression. Complacency and habit return very quickly.

But don't mind me. Selfish. And tired. Meh.

It all just got too hard

2010-02-24T11:32:00.002Z

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

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

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

It's hitting the fan right now

2010-01-27T06:56:00.003Z

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

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

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

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

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

Onwards and upwards

2010-01-17T10:22:00.003Z

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

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

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

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

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

It's going to be a long road ahead

2010-01-10T07:05:00.003Z

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

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

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

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

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

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

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

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

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

"and if I'm not dying?"

2010-01-06T05:10:00.003Z

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

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

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

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

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

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

Arse.

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

2009-12-31T05:46:00.002Z

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

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

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

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

Over the Hills and Far Away

2009-12-23T18:05:00.002Z

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.

It was fun while it lasted

2009-12-20T07:49:00.000Z

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.

Business as usual, i.e messed up!

2009-12-07T07:53:00.002Z

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!

I might even be around for Christmas!

2009-12-03T17:36:00.003Z

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.

Decisions, Decisions

2009-12-02T11:49:00.003Z

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"
- "BASTARDS!"
- "I think they may have rung me first because they know that I am 6 hours ahead of them and you are not"
- "BASTARDS!"

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?

Today's the Day (apparently)

2009-12-01T07:16:00.002Z

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.

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

2009-11-27T06:11:00.003Z

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?!

Sharing the Caring

2009-11-23T05:27:00.003Z

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.

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

2009-11-20T05:27:00.003Z

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.

So I'm not actually in Israel

2009-11-16T07:37:00.002Z

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.

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

2009-11-10T06:10:00.003Z

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.

"Cut me open, Doc"

2009-11-08T15:15:00.003Z

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!

Having a small attack of the Green Eyed Monster

2009-11-06T04:03:00.005Z

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.

Cracks in the Masonry

2009-11-04T06:09:00.005Z

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:

MY FATHER DOES NOT HAVE THE GENETIC MUTATION. ANY OF THEM.

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!

Wrestling with the Grim Reaper

2009-11-02T11:49:00.001Z

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?
probably.

Out of touch

2009-10-29T09:30:00.002Z

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.

Oh Hai. I iz in London, feeling ur rain

2009-10-27T06:40:00.003Z

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? :-)

How do you solve a problem like a grandma?

2009-10-24T08:50:00.003+01:00

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.

This is Grand Central Station. Alight here for Cancerville

2009-10-23T16:24:00.003+01:00

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?

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

Good luck!

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

2009-10-22T05:28:00.003+01:00

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?

Chemo Stories

2009-10-20T07:44:00.004+01:00

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.

Israeli Angst

2009-10-19T05:56:00.002+01:00

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.

Israeli Limbo

2009-10-17T08:46:00.005+01:00

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.

"There is a difference between what you want and what your parents want"

2009-10-13T11:21:00.003+01:00

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.

Gearing up to going back in

2009-10-12T08:13:00.003+01:00

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...

Someone else's story

2009-10-08T06:49:00.004+01:00

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.

The Lack of Straight Dope

2009-10-06T07:19:00.003+01:00

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.

Staying on my father's side of the fence

2009-10-04T06:59:00.003+01:00

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.

Having one's head in the sand may be the superior option to having it sliced off by a passing shit-conducive fan

2009-10-03T06:47:00.005+01:00

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?

whose cancer is this, anyway?

2009-10-02T06:18:00.002+01:00

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.

There's a spot

2009-09-30T23:06:00.002+01:00

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"

2009-09-30T07:51:00.006+01:00

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.

Waiting in Israel

2009-09-28T13:56:00.003+01:00

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.

Waiting

Off to tell Gran

2009-09-26T10:25:00.003+01:00

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.

Journey starts here

2009-09-25T13:06:00.000+01:00

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!