There is a reason I shouldn't make plans

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.

Sharing the Caring

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Heading to Geneva on Sunday, which will be nice.

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

Oh Hai. I iz in London, feeling ur rain

So I flew back to London yesterday.

My mother told me, before I left, that I should be talking to my brothers and spending more time with them. This is a lovely idea, but not helpful, seeing as they are both halfway across the world. On the 6th of November, one will be in Israel for a few days, and we are all planning to meet in Geneva for "Thanksgiving" (which is what we will call the time that all the Americans seem to be taking time off at). So, just to make it absolutely clear, the planned dates for the coming months are:

2nd November: fly back to Israel
9th November: Back to London
16h November: Back in Israel
22nd November: Back in London
27/28th November: Geneva possibly
30/1st December: Houston for the tests possibly
8th December: Back in London, entirely dependent on what the doctors say

I am finding it utterly impossible to keep to any kind of weight-loss plan while I am jumping from place to place. This may sound trite, but so long as I am only a week in any place, I psychologically feel like I am on holiday, in a weird way. This must stop. Diet and exercise start now!

I have a smear test booked for Friday. I know, too much information. But the woman on the phone was very reluctant to give me an appointment. So I played the Cancer Card. I have not been doing that so far, although my father is happy to. He was taking out his crappy mood on my mother the other day and when she asked him to stop he said, "I have cancer. I will do what I like". She responded with, "I don't care what you have. If you treat me like this, I will kill you myself." Point.

In the meanwhile, my father is being as irreverent about the Cancer as I tend to be in this blog, which makes me feel like we are on the same page about some things. It drives my grandmother crazy when my father starts making jokes about death, pain or anything cancerous at all. To which he responds, "It's my cancer and I will say what I like about it". So the Cancer Card can work both ways.

Having left the country, I am no longer in such close contact with my parents. Of course I talk to them at least twice a day, but it's not the same as getting the inside info on how they are coping. And I think it's hard right now.

I have been worrying about whether having a disabled partner and dealing with medical matters, pain, fatigue and drugs every day has somehow made me jaded or cynical to what others are going through. Sometimes, instead of sympathising with what my mother goes through with the doctors and so forth, I think "yes, I know, I have been doing this for years!" She does get very stressed, which does not do her any favours. Of course, my partner does not have a diagnosis which may prove fatal, but I think that what my mother hasn't figured out yet is that, as well as my father having a life-threatening condition, it's also a chronic one. If she tries to keep up the pace she is at for a long time, she will burn out. I think she knows this, but can't switch off the panic. And a very small part of me, I am ashamed to say, thinks "na ni na ni boo boo, I have been doing this for years and you have always only looked down on me for it. Now it's your turn." God, that's terrible schadenfreude. But now it's out there and I can move on.

In other news, my grandmother had her 80th birthday on Sunday night. The enormous plan to take her to Florence had to be aborted because of my father's diagnosis, so we had a small dinner in her honour. Everyone got into the mood, which surprised me, given the circumstances, although my father did cry a little bit. Facing one's mortality every day sucks.

I gave my grandmother a photo album of pictures that my father has taken of us over the years. She has not been able to see the pictures since my father went digital in 2003 or so, so I thought she would like it. And the unspoken reason, which I think everyone knows but no one talks about, is that, if my father doesn't make it, she will have something to look at to remind her of him.

Anyhoo, this has got a bit heavy, so I will go back to drinking my coffee and wondering why I was up at 4am. Jet-lag, yes, but I believe I was dreaming about my dad castigating me about something. Why can't he just be satisfied? :-)

How do you solve a problem like a grandma?

So we are looking towards the future right now, to the upcoming trip back to Houston to see what work the Chemo may have done. It's not until the 1st of December, but we can already foresee an issue: My grandmother fully intends on coming and staying for as long as it takes. And she wants to bring my great uncle.

What's the problem? I hear you ask. Well, I would, ordinarilly be in favour of my grandmother being with my dad for as long as possible. She is the mother of an only child and has every right to be with him for as long as she likes. Problem, though, is that she freaks out easily, gets angry when she is not kept in the loop but does not understand any of the medical things she is being told. She, for instance, had a go at my father yesterday for eating almond spread, because, she says it's fattening. She doesn't realise that the rules have changed and that he now has to gain weight, otherwise things will be bad.

In fairness, if my parents kept her up to date with what the nutritional requirements were, etc, then she would not make these irritating mistakes, but the other argument is that she doesn't listen. She only knows what she has heard from her friends in the "I knew a friend of a friend who had your type of cancer and they did... or, I think it was cancer. Or maybe it was MS" sort of way. So she thinks she knows best (ahhh, Jewish Mothers) and, in the meanwhile, my mother is the bad guy who is trying to keep her away from her son and might well kill him in the process.

Now, things being well in Houston, the next step may be radiation therapy and then he may be in Houston for several months. And true, anyone can hold my father's hand, but my mother knows what drugs he is on, how much he takes and how he reacts to everything. So, as much as it's important to support him, his "primary carer" i.e. my mother, needs support to. And this does not come in the form of my grandmother.

My mother rightly says that she will not trek to hospital with us every day and will end up in her hotel room going stir crazy because she has no idea what is happening with her son. And then she will need to know every infinitessimal details and then she will worry about it, which causes my parents more worry.

In short, my mother says that she is not sure she will survive Houston as it is, and with my grandmother there, the chances are even slimmer.

I told them to sit her down and have a candid conversation with her about this. I think she will respond to reason and, when she sees that no one is lying to her or trying to trick her, she will calm down. After all, the trip to Houston could be only 1 week long, and then straight back to Israel for more Chemo. But they are not convinced.

So what do you do? Is it a woman's inaliable right to be with her son when he is suffering, even at the expense of his wife's sanity? And can the two learn to coexist in any reasonable way? Tune in Next Week for the next part of Days of our Deaths!


Oh, P.S Preliminary results have come in for the genetic tests. So far, my father tests positive for all three mutations. And I now have American medical insurance.

Chemo Stories

Yesterday was intense. I ended up in bed at 8pm. That intense.

Basically, chemo goes like this (anyone who doesn't know my famous blog-by-schedule is about to discover it!):

6:45am - Get up. Find relevant computers, get dressed, brush teeth.
7:15am - Grab a slice of bread with cottage cheese
7:30am - Leave for the hospital
7:45am - My mother realises that she has left all the medical notes at home. I get out of the car and hail the first cab.
8am - Cab arrives back home.
8:02am - Cab on the way to hospital again, with medical notes
8:30am - I struggle into the ward. My parents are waiting in reception
8:31am - I realise that I dropped my phone in the cab
8:45am - The cabbie picks up my phone after I have been ringing it compulsively. He says he will bring it back to me.
9:30 - We are still sitting at reception. Evil Dissenting Doctor comes by and chats to my dad. For an hour.
10:30 - My dad is shown into a room with a bed in it and no windows. He is hooked up to some saline and some preparatory fluid. No chemo yet because they have not finished preparing it in the lab.
11:30am - Lovely nurse comes in to say that still nothing has happened. We eat some sandwiches. My phone arrives with the cabbie. My parents begin to call in the big guns, best friends of the doctors, heads of the hospital. You know, the big guns.
12:30pm - The drugs arrive. The ward shuts at 3pm, so they now have 2 1/2 hours in which to give him the drugs that would usually take 6 hours. The drip is moving really fast.
3pm - The drip finishes and we are packed out. My dad has chest pains, so is ushered into a doctor's office to check him out.
3:30pm - There is nothing wrong with him.
3:35pm - Dissenting Doctor's Nurse wants us to come up and have a chat.
4:45pm - We leave the hospital
4:50pm - We get stuck in traffic
5:15pm - We get home. My father gets into bed.
5:25pm - My grandmother arrives
6:30pm - My grandmother leaves my dad to sleep and I take her to eat burgers.
8pm - I come home and collapse.

So, relevant details. Firstly, Israeli hospitals are just like any other. They are brightly lit with lights that hurt my head. They have no windows, they are busy and they are harsh. Overall, not a nice place to be. They have promised that it won't take so long to get the medication next time, which my dad is pretty pissed about.

Otherwise, my father feels fine. His pain suddenly dropped off yesterday, which truly makes me think that it was from the endoscopy. He was feeling weak yesterday, but this morning my parents went for a walk. So good.

My grandmother, however, is having a hard time. She wanted to come to the hospital yesterday, and my parents fobbed her off. I don't know whether this is right or not, but they had decided that they did not want her there. So she feels as if she is being sidelined. Nice. She has a lot of hurt feelings right now, as if no one wants her, and, frankly, it's not in my power to rectify this. It's quite hard enough dealing with all the fraught emotions on this side of the family without having to think about who is feeling left out. Nerves are raw, and everyone is trying to peer through the glass, which is so dark at the moment that the frustrations are high. And when you can't blame it on god or on the fates, blame it on each other. So we are all carrying a little bit of blame inside, which we are carrying for everyone else. And that, kids, is called sharing.

On a side note, I would just like to make it clear that this blog is my personal thoughts. It does not reflect or pass comment on anyone's experience but my own. By definition it is deeply subjective. And it's the best way that I have right now to communicate any thoughts or feeling that I may have. It is not meant to cause offense. It is not meant to provide accurate data about my father's conditions. It is not meant as a judgement nor is it meant for judging. I am grateful to everyone who reads it and just wanted to make that clear, so that no one gets upset or angry. Really, I would like to keep those emotions off the blog entirely. If we can.

Israeli Limbo

So, several things are happening at the moment. Firstly, my suitcase didn't follow me to Israel, so I am on the family desktop.

Secondly, my parents are not coping particularly well. They were underplaying how much pain my father has been in since they fiddled with his insides on Thursday last week. My mother is trying to give him different cocktails of drugs to help with this, but this means that no one but her can really help to care for him.

My mother says that my grandmother has become unbearable since they arrived in Israel. I told her that I would go and babysit, but that I feel like I am more useful at my parent's house right now.

Otherwise, the place has become like the train station that my grandmother's was when I was over there. My mother has no help and is therefore constantly offering coffee, cake and meals and then washing up after everyone, in between small talk. She is really hating it right now, but also knows that it's very helpful for my Dad. He had arranged for an enormous barbecue this afternoon before my mother had a mini-breakdown and begged him to cancel. Which he did. But that doesn't mean that it's going to stop. People keep turning up unannounced, because they think it's fine to do that.

Which brings me on to the complete lack of planning. My mother says that they are only planning from one minute to the next because they don't know how my father is going to feel. Well, I think that's tough. Funnily enough, this is actually something I know something about, living with a partner who has a chronic illness. So what do we do? We plan anyway, and then we cancel. We plan and cancel. If we didn't plan anything, we would never see anyone, we would not have gone on holiday and we would not be getting married. So you cancel. It's better than feeling well and having nothing to do.

It's my grandmother's 80th birthday next week. What's the plan? What plan?

In other news, my mother is seeking professional help to help her cope. And by this I mean cleaner, someone to help her host these stupid coffees and a counsellor. I am helping in any way I can, which is washing dishes at the moment, but I will see what needs doing. Limbo is an understatement for where this house is.

P.S The genetic test that we were supposed to have results for by now hasn't been done yet. It will take another two weeks. Why? Because the insurance company was querying it and forgot to tell anyone. C'est la vie.

"I don't even have cancer"

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

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

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

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

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

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

Off to tell Gran

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

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

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

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

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