Friday, 27 November 2009

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

So this post is mostly about waiting. Again. Thrilling, I know. Ended up flying back into London a little bit early for personal reasons, so now I am waiting in London on my own. Which makes things feel both normal and bizarre, seeing that I am out of the loop. It scares me how much out of the loop a person can be, as illustrated by my brother last night. We were chatting and he said, "I don't know where I need to pack for or where I will be next week. After all, they could say that he's doing really well and to come back in a month for more chemo and then he will just bugger off to thailand". Stunned, I said "Um, no, there is less than an iota of a chance that Thailand is anywhere in the realm of possibility". It's weird, because he knows much more about stuff like the Whipple Procedure (the surgery that is sometimes done on pancreatic tumours) but didn't seem to realise that if you leave this tumour alone for a month, it could treble in size and kill my father.

My grandmother is recovering from her back injury and her life is almost back to normal. However, we have a new war injury, namely my mother, who fell off the pavement and hit her head and wrist. She needed stitches in her forehead and is wearing a sling. God knows if it's broken, but she will get it checked out in Houston. I feel irrationally guilty, as if, if I had been there, this would not have happened. I don't need to be told it's not my fault, but sometimes you feel it anyway.

The reason updates have been thin on the ground is that nothing much has happened. We are all just waiting. It's been almost two weeks since my dad's last chemo. He is feeling good enough to walk to work (I walked with him and it takes about 40 mins) and stay at work all day. He also felt well enough to travel, alone, to an overnight meeting in Bucharest and came back tired but chirpy. It's all too good to be true. I feel like we are setting ourselves up for a fall, because it can't possibly be SO GOOD. I am worried that, come the 1st December, we will find out that the cancer has spread everywhere and that he may feel well, but he has 2 months, tops.

I know he has had the best possible care (most of the time) but, after all, he was staged as 4, and that's not a funny staging. It would be insane to allow yourself to believe that just the chemo has done the trick, right? Chemo doesn't do that with the pancreas. But maybe I have heard just the horror stories. However, in the UK in 2005, there were 7,632 cases of Pancreatic Cancer. There were also 7,288 deaths from Pancreatic Cancer. And my father is flying off to Romania. What? I mean, WHAT?!

Monday, 23 November 2009

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.

Friday, 20 November 2009

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.

Monday, 16 November 2009

So I'm not actually in Israel

Everything has been quiet for a few days. My father had his last round of Chemo yesterday, and I believe all went well.

My mother told me that she has been trying to contact the woman who recommended us to French Surgeon. He had treated her husband and that's how the whole thing came about. There had been radio silence for a while and then my mother found out that the man had died, which was why his wife was unavailable. And apparently French Surgeon knew this when we sat with him and never mentioned it. Nice. I won't dwell on it, because the two cases are very different, but it happened. So it goes.

I was supposed to go to Israel last night, but I put off my flight because I felt sniffly in the morning. Seriously. My father's white blood cell count was down yesterday at chemo, so his immune system is feeling a bit down in the dumps. The last thing he needs is someone coughing on him. I feel much better this morning, but I have rearranged my flight for Tuesday (£30 change fee, thank you BA!)

So I am still in London.

My mother just told me that the chemotherapy madness was even worse yesterday than when I was there. Apparently, there was only one nurse on duty for scores of patients, and, because my dad's nurse was not there, this one had no idea which treatment her needed. "Is it treatment one or two?" Cue my mother calling Doctor Friend, who came down and gave her the right prescription. But my father has been given two different treatments in the past month. So one of them MUST HAVE BEEN WRONG. Great. My mother and I are both losing faith in this hospital very fast.

Also, in the 14min conversation that I had with my mother today, she said that she thinks that I am far too willing to give up my dreams for the good of other people and that I should not be doing it. She is referring to bouncing back and forth to see my dad, but doesn't only refer to that. I told her about the project I am slowly cooking up to placate her, but, as usual, at the back of my head, I hear "27%!" So I sacrifice a year to my father. So what? As far as I know, I have a few more in reserve, which he may not.

Beh. Everything will be clear on the 1st. Maybe. Or Maybe Not.

Tuesday, 10 November 2009

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

I dreamt that I had my very own support group at a hospital where my dad was having treatment. These are either the people I would want around me, or I have been watching too much television. My lovely group were diverse and supportive, also having family battling cancer.

There was Tom, the kind gay boy, Jack, the funny, stoic guy, a lovely, shy black girl that I didn't get a name for in the dream, and some other people. It wasn't a "sit around and swap sob stories until you reach catharsis" group. It was more of a "hook up, have coffee, and talk rubbish" group.

So that was nice. And also a dream. My brain likes dreaming about chemotherapy recently. I find myself in hospitals a lot. My father is still about 5 days off his next round, and I have gone back to London, so god knows where my head is.

I am trying to get back to work. What I mean is that I am tentatively beginning to plan things, make things happen, in the full knowledge that I may have to cancel them, but caring less. I would like to be able to apply for jobs in February or March, just because I figure something will have to have happened by then. this is a total fallacy, but my brain is unwilling to accept a future where everything is still misty in 4 months. So I have picked a date out of the air. We shall see if I am right.

The 1st December draws nearer. I am loathe to believe that our entire futures hang on the balance of this one day, or one set of tests. Because I have seen how these kinds of expectations have gone so far: "We will know much more once we have a diagnosis." "We will know much more once we know if these are other growths". "We will know much more once we know if it is genetic". It's all bullshit. We are never any wiser about what the future holds, so I am not going to pin my hopes on this time. It's just common sense.

Sunday, 8 November 2009

"Cut me open, Doc"

We went to see a surgeon yesterday, who shall be henceforth known as French Surgeon. He is French. He said that he would be more than willing to operate on my father's tumour, providing that on the 1st of December the tests show that the spot on his liver has either shrunk or not done anything. So, we are praying. The selfish bit of me quite fancies spending the second week of December in Paris!

However, he also says that there is no point in operating on it if the tumour keeps metastisising ("spreading", for us laypeople). It will not prolong his life and would be pointless.

For one optimistic and completely unrealistic moment, I thought, "well, that means that in December or January he can have the surgery. Potentially French Surgeon will get it all out and then our lives will be back to normal. How weird would that be?" Then my mother reminded me that he would have at least 6 months of further post-operative treatment, even in the best possible case.

Ah, whatever. I am fed up of not looking towards any future at all. So even if I make them up, I feel that I am entitled to, as no one can possibly tell me that I am mistaken.

London tomorrow.

As a side note, I have been reading some blogs of people I barely know and am currently feeling better about the rubbish I post on here. At least my grammar is up to scratch!

Friday, 6 November 2009

Having a small attack of the Green Eyed Monster

I'm feeling a little bit resentful today. This is probably an ugly post, so avert your eyes if you want to maintain the illusion that I am a saint.

Ok, still with me? Right, so here goes.

Actually, I would like to precursor this with an introduction:

I was sitting with a friend a few days ago who said that her father had eosophogial cancer and she was reading my blog and ticking things off her list of how she felt, as the process was very similar. I was comforted by this and was really glad to have spoken to her. But here I am about to stray into a problem that most people probably don't have:

I am jealous of my parents. Not the cancer, of course. I am jealous of the fact that they only need to say "go" and tests are done and results obtained. The nurse who did my smear test said it would take 4 weeks and then they would send me the results by post.

I am jealous that my father got authorisation for a blue badge (disabled parking) last week simply because his doctor said so. Ok, so I think that the criteria are weird out here, and I am not saying he does not need one. But why did it take us 3 months, including an aborted trip to an inaccessible GP's surgery to be given the same consideration?

I am jealous because my mother wrote an email to a famous surgeon about my father's case on Wednesday at 7pm and by 8pm had a response from him saying that he would be happy to meet with them. And all because they had had an introduction from a woman whose husband was already a patient of his.

I am jealous because my father does not have to fight for the medication he needs with doctors who don't think that a particular drug is "necessary" and therefore refuse to represcribe it. He gets what he wants and needs without argument. Maybe that's because it's cancer and therefore my dad gets what he wants, when he wants because we may have many years to battle the system after his system has given up.

But, in short, I am jealous of the ease with which my parents seem to be navigating these waters. That's a terrible thing, because I would not wish their situation on anyone, but, on the other hand, it's not like my partner's impairment is a "nice" one which gives her or me all the energy in the world to ring government agencies 20 times a day.

Sometimes I tell Nay, "you know what? Sod the government. Let's throw money at the problem, because that will save us the aggro". But she soldiers on on principle, because it's important that people like us pave the way for people who are less able and less vocal. But sometimes I want to have a friend at the Department of Work and Pensions, at University College Hospital, at JobCentrePlus. Because what I am really jealous of is the grease that has been put my parents' wheels, the fairy dust that makes their passage through this seemingly blessed.

My mother complained that the blue badge was going to take a week to arrive. I laughed, then thought "now you know" and then almost strangled her. Wow, that's really ugly.

So remember, boys and girls, Cancer is not nice. But money and connections help. And always, ALWAYS, remember the poor sod struggling next to you and give him a hand up the step, if you at all can. And if you can't, you can always blame the DWP.

Wednesday, 4 November 2009

Cracks in the Masonry

My parents are fighting. I blame my father's pancreas. He gets irritable out of pain and then shouts at whoever happens to be around. So we are tolerant. My mother has started therapy, which she wanted me to come along to on Tuesday, but I have to be in London. My grandmother is throwing herself into courses and classes, which is good, but she is still not sleeping at night. Does it make me a bad person that I sleep fine? Am I more or less enlightened by not worrying the whole time? Am I in denial, or am I at the "acceptance" phase of the proceedings? I am pretty sure I could worry myself into a tizzy if I wanted to, but I don't really. I would rather sleep. Does that mean I don't care? I'm not really comfortable with these ideas, so I will leave them out there for the cosmos to deal with and come back to them when I have some answers.

In the meanwhile, plans have changed. And, apparently, I was given false information. So, listen up everybody:


Which means that I am unlikely to. Which is good news for my brothers and I, but bad news for my dad, as the non-genetic version is harder to treat.

So, I went in to the kitchen yesterday clutching a calendar. I sat down with my mother and told her about the Plan for the next few weeks. The first thing she said was "you really don't need to come with us to Houston". I am not sure I agree with that sentiment, but my father says the same, so lets go with that.

So, the revised schedule looks like this:

9th November: Back in London
16th November: Israel Again
22nd November: Fly with parents to Geneva
23-26 November: At some point fly back to London
Stay in London until I know otherwise.

What else? It's a bit stressful out here at the moment, although my father is feeling physically well, I think. Emotionally, everyone is a bit stretched right now, and the biggest problem is the relationships between each other rather than our own personal coping mechanisms. This probably suggests to me that something is faulty in those, but just because we are finding each other difficult right now does not necessarily mean that people are taking out their anxieties on each other. I hope.

Funnily enough, I have some work that I have to do and I have to supervise the repairs to the house, that was battered in the storm we have had over the last two days. Apparently the fuse box caught on fire on Friday. That's all we need!

Monday, 2 November 2009

Wrestling with the Grim Reaper

I am at the airport, blogging from my phone. going back to sunny Israel ( where it is raining, incidentally). and I am thinking over the last few days.

nothing much has happened, bar ending up at two vigils, or memorial services. the first was the vigil against hate crime in trafalgar square. the second was a church service celebrating All Souls Day.

the vigil was sad and celebrated senseless, violent death. the feelings of outrage were palpable and I left feeling that we can do more and should do more to prevent attacks on people simply because they seem different. this is avoidable death.

the church service looked at garden variety death. this is death that may have been violent or preventable but is more often just inevitable and sad. everybody dies. this never ceases to shock me, even though I am unhealthily obsessed with the idea.
so what am I trying to say? if my father dies, should he not be mourned because death is as normal as life? "so it goes", as Kurt vonnegut would say.

more to the point, however, is the question of how we should be facing grief right now. just because no one is dead, does not mean that there is not loss. and the potential for further loss. so I am here, facing Death (and anthropomorphisising it for the purpose of the metaphor) and waiting to see what he will do.

currently, he's just loitering in the corner, watching us. but, like a wild animal, if I take my eyes off him, he may pounce. so I ask him "what are you going to do? do we need to prepare ourselves for the grief that you bring?" but there is no answer. Death has no interest in me, which is, I suppose, the point. He is indifferent to any pain he causes because if it's time, it's time.

am I consoled by this? not really. but is it better to wait for signs that the Grim Reaper is backing out of the room than to deal with simple, stupid grief?