Horribleness after the fact

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Together again

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

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

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

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

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

Passing the Time

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

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

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

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.

Published with Blogger-droid v1.6.7

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.

Published with Blogger-droid v1.6.5