Today I am sad

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

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

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

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

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

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

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

When it rains it pours

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

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

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.

I really didn't miss the hospital

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!

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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