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.

Back to Houston

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!"

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.

They think it's all over

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's hitting the fan right now

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

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

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

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

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

Onwards and upwards

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.

"and if I'm not dying?"

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.

Decisions, Decisions

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

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

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

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

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

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

-"Have you heard anything?"
- "Um, yes. They called about 20 minutes ago"
- "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)

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.

Out of touch

Being in London has one big drawback. I get updates once a day about how my parents are doing and I consequently feel guilty about not being there. That's not to say that anything is wrong, but so much goes on when I am there that I know that I am not getting all the news.

However, what I do know is that Evil Dissenting Doctor never got back to my mother, despite the fact that she was calling and emailing him every day. She finally managed to get a hold of him to ask him the important question of what to do about my father's blood sugar levels. My father has been on a low sugar diet for a very long time, as he has been trying to keep diabetes at bay. Now, with the new, low fat diet, his sugar levels have gone through the roof. Which is bad. So my mother rang to ask what to do. He said "ask your GP". She said "We don't have a GP here". He said "Oh, we must fix you up with one". My mother went ape-shit, seeing as she does not want a GP to give her advice when a GP would in no way be a pancreatic cancer specialist. So the ongoing Israel experience is not a good one.

Problem is, of course, that if my parents go back to Houston for the superior healthcare, they will lose the social network that they have in Israel. My mother also says that the guests have been coming far less this week, which is silly as this week my father is feeling better. In the first week after chemo, my father is supposed to feel like crap. In the second week, not so much.

Personally, I think I am pro them going back to Houston. It would only be a month now (slightly less even) and the care would be much better. But it's not up to me, as much as I can make my views heard. Also, I am worried about giving out opinions, because I know that these are things that my parents get quite enough of without me adding my voice to the hubbub.

Otherwise, nothing to report. I am keeping busy but I am almost waiting to go back to Israel to know what is going on. Gah.

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.