Hieronymous the Anonymous

Nearing the corner

Image via Wikipedia

I went with mum last week to visit her oncologist. It had been about 6 weeks since her previous visit. Early in the year regular chemo was scheduled for her, but after each dose her blood levels went into meltdown. Every week she would have her blood tested to see if her blood had recovered sufficiently to begin the chemo again: every week the answer was no. The result was that even though we're nearly halfway through the year mum has only had three sessions of chemo when 12-15 might have been expected.

The last time we saw the doctor he agreed to pause any attempt at chemo to ensure that mum recovered sufficiently to begin again. Mum is crook enough without picking up an infection in her weakened state. And the chemo, unsurprisingly, knocks her around.

It's been about 8 weeks then since mum had any chemo and she's felt as good as ever. Going in to see the doctor last Wednesday she considered telling him to hold off the chemo, or at least space it out. It's the old balancing act, quality of life versus quantity. You want to hang on to life, but it has to be a meaningful life. I understood, though proferred no opinion - it's a decision only she can make.

As it turned out it's what the doctor ended up suggesting without any prompting from us. It seemed pretty common-sense. There's no guarantee that the chemo is doing much, and if you're doing well then why change it? We agreed to meet again in another 6 weeks, with the proviso that if anything changes before then that we come in again and review the situation.

It's still very hard to comprehend that mum has cancer she will die from. She seems pretty well. She shows few outward signs of it. And she's been my mother all my life: how can that possiubly cease?

Last night she rang sounding terrible. I could barely understand her. I gathered she had a serious cough and cold blown up out of nowhere. The sub-text clearly was the question as to whether it was cancer related? You can't presume that I told her. That's my line, keep it calm, keep it reasonable. It's been a cold and wet month and colds are not uncommon.

I spoke to her again this morning. She sounds no better and reports pains in her stomach. She is going to her GP. I don't know what to think. At the back of your mind is the nagging thought that it could be the cancer. It's almost the easiest thing to believe because it looms so large in your mind. And I am reminded how quickly things can change. Whether this is just a cold or something more the point is the same. It's just around the corner, and the corner may come a lot sooner than you think.

Related articles

• Chemo Treatment #2: The Neutrophil Edition (andyridesagainstcancer.wordpress.com)

Family health

I've abstained writing about the state of mum's health for the last few weeks because it's something I want to get away from. I don't know if you understand, but when someone close to you has a terminal disease you find much of your life revolving around that single fact. There's always a lot to think about and discuss, not to mention appointments with doctors and specialists. Quite beyond that is a shadow you carry with you everywhere you go. To escape from it for a while, to avoid the subject if possible, is both desirable and necessary. And so I haven't written of her here.

In actual fact her prognosis has improved. Her condition is still terminal, but the chemo she has been having has been more effective than expected and her life expectancy is now 12 months or more. Of course it's not as simple as that. There are ongoing complications with her blood meaning mum has missed more chemo sessions than she has had. And there is the ongoing and inadequate communication from doctors who mean well, but have no real conception of what this is like. There's a whole other story there I can't be bothered going into.

So, on the surface at least mum's immediate future looks brighter. For me it means I can get back to my own life. I'm still a bit of a sceptic in the face of so much confusing and contradictory information, but my general outlook towards her condition remains unchanged: make the most of the time you have, don't dwell on what is to come.

Now my nephews are sick too, quite suddenly. They are both in hospital right now with something just short of renal failure. They are 13 and 10, both came down with very severe cases of gastro which ultimately led my sister to take them to hospital, where they were admitted yesterday. My mum tells me they look like they have just come from a concentration camp. They are gaunt and thin and listless. It's also a bit of a mystery what has caused this, which is the concern now.

They'll be ok. Had it gone on much longer without treatment they may not have been, but the worst has been averted. The doctors are scratching their heads though about what the problem is. It seems more than just a bad dose of gastro. The doctors ask if there is any history of kidney problems in the family, which there is - my sister and a cousin both had serious kidney complaints. Perhaps the problem is inherited, perhaps it is in their kidneys as the doctors seem to be thinking, but something had to trigger it: they both can't have kidney problems spontaneously occur at the same time.

They'll be in hospital for a few days yet as they recover their strength. They're under observation now and will be tested for what ails them. My sister naturally is a very concerned mother right now.

Much ado

My head is sort of spinning at the moment. I've been immersing myself in a variety of different learnings, some within my area of expertise, some way outside of it. I think I have to do this, but the bonus is that no matter how clogged my head feels or how much it spins I sort of enjoy it. Being curious is the baseline for me, and so satisfying that curiosity is always going to be fun.

Not surprisingly maybe I've never felt more competent than I do now. My head buzzes with new information and in its way quickly begins joining the dots between the separate pieces, imagining and extrapolating before synthesising into a neat set of bullet points. Out of all this come opportunities which I'm itching to exploit.

In the last couple of days I've written a short piece on Collective Intelligence for my soon to be released website, and updated another piece I've called the Human Element. I've been in contact with professionals in Asia and the states looking to outsource expertise I don't have to finalise my business Facebook and twitter presence, to manage lead generation and possibly content management. I've learned a lot about these things recently, but I'm not expert enough to do it myself, nor do I have a time - and at $15/hour why not get someone else to do it for me?

While a lot of this is related to my career and business I am also putting time into other areas of my life. For the last couple of months I've been seeing a personal trainer 2-3 times a week. I'm getting pretty fit, and beginning to look both trim and pretty cut. All good. I'm motivated to continue on this path though I hate the exercise - the 'high' people speak of is a myth to me. No pain no gain as they say. I know that I have to work - and to suffer to some degree - if I'm to achieve my end goal. That's the cost, I'm prepared to pay it.

I get competitive with these things. It grows as a challenge in my head to the point I feel as if I have been dared to go harder, longer, further. My commitment grows out of a belligerent defiance. And because of the way I think I find myself wanting to know more. To that end I have been reading up on human physiology in reference to the effects of diet and exercise on the human body. I find the cause and effect fascinating from a scientific viewpoint. From a personal viewpoint I have adopted some of the findings into my life. I've modified my diet and am exercising regularly with or without my PT. This is not forever - I value the good things in life too much - but I'll give it a month. If it goes to plan I should be pretty sweet by then.

Last night I went out with a girl I met speed dating last week. She's cute and interesting. She's the project manager for a new Australian retail website. We found much to talk about in her work, which interests me and which overlaps some of my expertise. I grilled her about certain aspects wanting to know more. Outside of that we shared a few glasses of good pinot, a good meal, and a bit of each other.

I'm seeing the Irish girl Thursday and catching up for drinks with a Kiwi next week. In a moment I'll set off to the myotherapist so he can work on my back, which is much improved. Then it's lunch with a friend who also happens to be a job opportunity.

How do I feel? Fit and healthy, strong and smart. But also frustrated. I need to apply these things to make them worthwhile. I need it financially, but I also need it spiritually. I've got into this business for the good of my soul as much as the health of my bank balance. I want to make a difference, I want to show why I can do and run with it as far as I can go. Just have to make that happen now.

Related articles

• Twitter and the collective storytelling (yihongs-research.blogspot.com)
• Modern Day Examples of Collective Intelligence (brighthub.com)
• What is Collective Intelligence and how do we harness it? (brentsilva.wordpress.com)

Enough

This is very selfish of me. Donna thinks she has breast cancer, like her mum did. If she has then I give up. That's the end. Except it won't be. I feel surrounded by it.

Chances are she hasn't, but...

Know Thursday.

The prognosis

Yesterday we saw the doctor. He showed us the PET scans and the results were obvious. The tumours in mum's stomach were gone. Instead there were two clear spots, one in either of mum's lungs that weren't there before. Sitting between them in the lymph nodes was a larger patch about the size of a 50 cent coin. There was the proof. Cured in one spot the cancer had sneakily spread elsewhere.

We discussed all the options, but they pretty well boil down to this: mum has about 3-6 months to live. The cancer is aggressive and while it's progress might be delayed by chemo there is no guarantee. Without treatment it's probably closer to 3 months, but then quality of life will be so much better.

There's a lot to think about. The room was shocked. I was less so - I had prepared myself for any eventuality. It's a tough gig, but there's no value in gilding it. My experience may not be typical, but it runs pretty deep now. I've lost an aunt and uncle to cancer, as well as a step-father and step-mother. It was an ugly for each of them, with none of them weighing over 50 kilo's at the end.

Maybe it won't be like that. Maybe there's a way. You have to explore options, consult with doctors. In the end it's mum's decision as to what she wants to do. It boils down to quality of life versus length of life I think. And near the end there are tougher decisions to be made. Having witnessed what I have I know what I'd do.

These are pretty tough things to talk about. It still feels very strange that this conversation is possible. Mum looks fine. She has minor issues, but feels fine pretty much. That will change. Regardless of treatment she will find it more and more difficult to breathe. The cancer will eat away at her from the inside. She will decline, and quickly by the sounds of it. I don't want to see that. I don't know what we can do though.

Yesterday afternoon mum had many of her friends come around to her home. They came in the expectation that the news was good. I sat there and did the good son bit. I was friendly and social, I looked after people's drinks. I listened as again and again mum had to explain to the newcomers the truth of her condition. Their reactions were shock and dismay. For me listening it was like hearing an awful recording played again and again. I choked back the tears, I steeled myself each time.

In her way mum was in her element. We drank good French champagne and mum told her stories to an eager audience. I listened, knowing most of the stories by rote. Mum, I saw, was a glamorous figure to all of them, a warm, extroverted character who had led a life more interesting than most of them.

She was at her best yesterday, bright and brave, playing to the crowd, but without the theatrics. Pushed to her limits the best of her emerges, as it does for many people. Maybe it's because she need do nothing to be the centre of attention. Keep it simple, be natural. And she was.

For me the afternoon was torture. Everyone was very pleasant - good people - and I was happy to support mum. There were times though I felt as if I needed someone too. Ever since hearing the news on Thursday I've felt like talking, but not known what I wanted to stay. I wanted to be there for mum, but I also wanted to get away at some point for myself. People came and went though and I felt I had to present throughout.

There are tougher things than that, but it felt a kind of purgatory. You can't expect much less than that. I left at about 8pm with mum going to bed.

Long journey ahead, don't know what to expect.

Don't know

I was in at work today. After my hard drive went belly-up last night with my freshly written strategy document I was not in my best mood. In a meeting early we had a discussion that turned into a kind of debate. I felt mild frustration. I knew half my audience didn't understand the complexities of what we were presenting and probably never would. I was tired of answering the same question again and again, and weary of steering the conversation back to what was relevant from what was not. I was vociferous and my voice perhaps had an edge to it.

That was the morning. A little after 12 I received a call on my mobile phone. I listened as the caller introduced himself, my mind racing to keep up with the words trying to understand what it meant. It was mum's doctor, the man we meet tomorrow. My mind stilled as realisation clicked. I was suddenly wary.

He was ringing to see if I would be coming in with mum tomorrow to support her. He told me that the treatment had cleared up her diagnosed cancers, much as they hoped. Unfortunately the PET scan she had yesterday showed signs of cancer in her lungs that were not there before. I knew that was bad. I asked him what it meant. His answer was succinct: any time the cancer spreads it's bad. That was that, two minutes on the phone and off.

I was shocked. I wondered if I should say anything to mum. Then I thought it was better to prepare her. I called her and told her exactly as it occurred. I didn't embellish, I told her not to jump to conclusions and that we'll know more tomorrow. She was upset. She expected the all clear. So did I. Earlier she had asked me to go out and buy some French champagne to celebrate.

I know this is it. I know there's no real cure for lung cancer. In any case mum has already said she wants no more treatment. The only question that remains is how long. She has long said that she would end it before it got too nasty. Having watched more than one person die of this I understand and support that.

I stayed at work. I couldn't focus on anything. I felt so sad and then somehow guilty. In the back of the mind I knew I would have to get used to the fact that my mother will one day soon be gone forever.

Why does this happen?

Not lying down

Image via Wikipedia

I saw my osteo this week. I see her about once a month where we go through a few routines to free up my back a little. I'm a lot better than I was. A slipped disc is very painful, but the worst of it is past and it is manageable without being pleasant. Lets say I was 100% about the time I went travelling two years ago; when my back was at it's most painful I was about 40% of that. Right now I'm somewhere between 60-70%.

That's an improvement, but it's not where I want to be. I'm still pretty stiff and often sore. Last week I had to run and felt awkward and clumsy. I was always such a good mover that it was a shock to me. I was always in the three quickest at school, and near the best at the agility tests. That form fell away, but I retained the basic ease of movement until now. I used to look at these uncoordinated, shuffling runners and wondered how that happened. Now I feel unco.

It's not good enough and I told the osteo that. I don't want to feel this way physically, and there's certainly a psychological element at play also. This is not who I am. I need to be physically functional. I may age, but that need not cripple me - except that is what is happening now. Right now, for the first time in my adult life, I can't take stairs two at a time as I always have. I'll do anything I told her, to get back to where I was.

She recommended yoga and exercise. I'm doing the exercise, but I'll try the yoga. She told me my back will never be what it was. In my mind I was content to get back to 80% of what I was, but she told me that this might be as good as it gets. I tried to imagine that, a lifetime of being little more than half of what I was and declining from that. We can manage things she said, but we can't cure.

I can't accept that. Not completely. I know there's no way of fixing me short of operating on me, and that's not going to happen. I can't just accept this decline as inevitable, especially when its been so abrupt. I was so strong, so physically hardy. I could go all day, I lugged around a heavy pack for weeks just two years ago without too much issue, I climbed mountains and tested myself daily. I might get tired, I might get weary, but the next day I would be at it again. Now if I am forced to stand on the train too long I feel it through my whole body.

I'm away soon and though it will not be a rugged as in the past there will be challenges. I look forward to them. I want to put myself to the test, want to extend my physical reach bit by bit. I cant take this lying down, literally.

Big Friday

Last Friday was one of the more eventful days in living memory. I haven’t written since then not because there’s been nothing to comment on, but rather that I was over it.

Friday started well. I was up early to pick mum up and take her to an appointment with the oncologist. Quite unexpectedly he reported that he was confident that a course of treatment should cure mum. It was great news, but left me bewildered and silent for minutes after. I couldn’t understand, and wondered even as I celebrated if the variety of doctors mum has seen are all on the same page. There have been different stories and negative developments and yet, at the end of it, comes a prognosis better than the original and much in advance of our best hopes. In the end you take it at face value and feel happy about it. 

I went to work and immediately noticed a difference. It was as if a dark cloud had lifted from me. I felt better physically, and mentally I was brighter, more alert and much more focussed on the work before me. It was a pleasant relief. 

The good news continued. My sister called to report that the loan her whole future hinges upon had been approved. Then a colleague in the office called me over. He is a consultant and principle of a company with people in companies all across town. We have regular dealings together and have developed a friendly and respectful relationship. Over a coffee he explained to me that he had met with one of his bigger clients and had been sounded out about an opportunity that he recommended me for. He told me what he could and I was encouraged. It sounded a great and interesting opportunity, and the money on offer half again as much as what I’m earning now. 

I made a call about the job and left a message. The afternoon proceeded normally. Then just as I was about to leave work I got a call from my sister. Have you heard from Mum? She asked. No, I said. She explained that mum had rung earlier in a panic. She was haemorrhaging she said and being taken to hospital. I was alarmed. I felt the dark cloud descend. I called mum again and again on her mobile without an answer. 

I was on the train heading into the city when I got a call. It was from one of mum’s friends. Mum was on her way to Box Hill hospital. She had haemorrhaged badly from a routine procedure she’d had earlier in the week. There was blood everywhere. It was a shocking story. I was told that the doctors had ordered an ambulance and that a doctor would call as soon as there was news. 

For the next hour I stood in a bar with Ibs sipping on a beer and waiting for news. In the meantime the guy had rung about the job, but we agreed to talk again Monday. My aunt called seeking news I didn’t have. I explained what I knew and then made calls looking for information that wasn’t available. 

We were standing on the balcony of the Carlton Club and the conversation had ranged over the usual subjects when it lit on Amy. She really loved you man Ibs said. I cocked an eyebrow at that: really? He went on to tell me the story of how she had decided to leave her boyfriend and come to me, but had been talked out of it by the girls at work. I had heard that story before, but had somehow skipped over it. Hearing it again lended credence to it, and hit me harder than it did before. I sipped on my beer. I wanted to ask so many questions. On top of everything else that had happened through the day I now felt an intense disturbance to my state of mind. My mind raced as our conversation continued onto more innocuous subjects. 

There were a mix of thoughts going through my head. The first perhaps was wondering how things might have been different. What would have happened had she taken that step? Where would I/we be now? Then I felt a mild sense of vindication, but too mild for it to really mean anything. Finally I remembered how I felt back then and the feeling in the last days of virtual persecution. They were hard times, but I had accepted them for what they were. Now I saw them as being unnecessary and with that some anger: why was I made to feel so bad? Even that fizzed out though. It was the past, and though everything might have been different had Amy the courage to stick with what she intended she never did. Might have beens don’t count, though they’re curious to consider.* 

We had a quick meal together and then I left Ibsa and went home. I rang the hospital and then got in the car. I found mum in an examination room with my aunt and uncle. She looked pale and tired, but otherwise ok. She had lost over a litre of blood. It was a dispiriting place, but then hospitals almost always feel that way for me. I stayed for about an hour and then left. I felt exhausted, as I have most of the weekend and do now still. Mum was transferred from Box Hill to Peter MacCallum over the weekend. I visited her again yesterday, and this morning she was checked-out to begin 5 weeks of treatment. 

Not out of the woods yet, and much happening. 

(*Curiously, as a sideline to this, I was doing some cleaning over the weekend when I came across a copy of a letter I had written to Amy a few months after leaving her. Strange that it should re-surface now. I read it again remembering the time and the incidents I spoke of. She never responded to it and that was that. Unfortunate, but I got on with my life. Now it read differently knowing what I did. How much different might it have been had I known that then? For years after I left I would track Amy as she would read this blog. For a while it was daily before gradually declined to being weekly, then monthly. I was flattered that she still read and intrigued by it. If I could have reached out to her I would have, but I had tried that and been knocked back, and so it remained a curiosity to me. These days she hardly ever checks – there is much water under the bridge since and I have well and truly moved on to – until moments like these when remembrance is sparked. Such is life.)

Unequivocality

Image via Wikipedia

The most intimate relationship you’re ever likely to have outside your partner is with your mother. I think that’s true of most people and was probably true of me too at one stage. I have not been that close to my mother for some time, but the bond remains. The thought of her likely death tears at something very basic in me. 

I can’t really imagine a world in which she doesn’t exist. There are so many memories and the relationship has been so ‘present’ for so long that for her to go seems equivalent somehow to removing the commonplace items from the landscape. To look outside say, and to find that the trees that have always been there are now gone, or that the park on the corner is now a block of flats. It’s an alternative reality you never really considered. 

My mother and I are very different people. It’s fair to say that in character I take much more after my father. I have some of dad’s personality to, but there at least mum has an equal say. My mother is a glamorous figure, consciously so, the born social butterfly who lightly flits from one place to another. She has always been popular and has the personality of the entertainer and host. I have some of that too, though it is often differently represented in me. I also take my love for books and music from her. Once upon a time we were much closer, but as I’ve got older the differences between us have become more pronounced. 

Now all of that is irrelevant. She expects to die. My sister admitted yesterday that despite her protestations to the contrary that she too feels as if it will happen. It’s almost as if it is something we understand in our bones, regardless of whatever the latest doctor’s reports might conclude. It has its own momentum; that cancer is destiny itself. Maybe it is common to feel this. My experience with cancer has convinced me that it’s a death sentence, and perhaps that is the underlying cause for how we all feel. We may all yet be pleasantly surprised. 

My mum is very accepting of it. As I have recorded previously she is busy organising details of her will and funeral in a calm matter. I am becoming involved in this also, as I must, and find that I too look upon it with a practical eye despite the morbid implications. This is something I’m good at, and being good at it is enough to focus me. 

For all this there is something unreal about the situation. I don’t exactly expect to wake-up to find it’s all been a dream, but I keep waiting for the punch-line. It’s been so abrupt; a month ago was it and there was no conception that mum might be ill? Today she has cancer and faced with death. I don’t think I’ve quite got my head around that yet. 

This explains much of what I have been feeling. I’m told it is perfectly natural, and I suppose that it is. It doesn’t feel natural though. 

There is a metaphysical perspective in all of this. Death is so immense that we spend most of our life avoiding the subject until we are confronted with it. Now it sits there amongst us, a silent but undeniable presence. I can almost picture it, something hard and shiny and black. Like a black hole it sucks things in and exerts a pull that is constant even as we try and ignore it. Like a black hole no light escapes from it. It’s an unequivocal presence. There is no ambiguity, no degrees or variations in shade. It exists, like a pyramid sitting timelessly on the landscape. 

It doesn’t make me feel mortal. That doesn’t come into it. I find nothing personal in facing it, not consciously at least. It’s the final, unequivocal nature of it that is disturbing. There is another realm after all, unavoidable, waiting at the end of the line, intractable and mysterious, like something which has no dimensions into which you step to find that it is infinite. So I wonder. It has always been there and we have forgotten. Reminded of it its immensity upsets our equilibrium like a powerful magnet. How could we have forgotten? 

We forget for good reason I think. To live in the constant shadow of death must be torture. For us, now, we have to follow the path, there is no avoiding it. It may not end where we fear, but chances are one day, it will.

The underside

I’m in a pretty strange place right now. There’s plenty of good reason why I should be feeling some turmoil, though it still surprises me. I always think of myself as being strong and stable. I’m the reliable one, steadfast, calm, focussed. I think that’s how most of the world sees me to, and while nothing has happened to actually question that I can see the underside of it. 

A couple of weeks ago I wrote about how I was feeling unexpectedly ebullient. I have also felt exactly the opposite. This is normal I suppose, though it is foreign to me. I can be moody, but I’m rarely volatile. I think of myself as being pretty even tempered, and though I’ve never had any trouble in bluntly speaking my mind  this feels different. The mood swings are subtle and probably not obvious to most people, but they are swings. There are times I feel quite upbeat singing under my breath as I work and cheekily teasing others. Then there are times when I am grumpy and short, and notably impatient. All of this, I think, is in consequence of mum’s condition and the complicated mix of emotions that has engendered. It’s like having a small cyclone whip through you that sends everything spinning in the air. I guess maybe I’ve done well to manage it so well. 

Most of the time I am neither one nor the other – in other words I am close to normal. All the same there is a constant emotional drain on me even if it’s only in the background. It’s like leaving the power on something that draws off a small but discernible amount of energy – which accounts for that ‘fuzzy’ feeling I describe. I feel it slowly deplete me even as I go about my normal things, and feel it elevate as news comes filtering through of different developments  and in the effort to organise and manage things related to her situation. Sometimes it becomes much more. 

At the same time and probably in reaction to much of this there are other parts of my life that become more dynamic. Lately, it seems, I only need to meet with a woman for me to end up in bed with her. They are of all types and with different intentions. For some it’s just fun, others hope for more. Me? Well I just go with the flow aware, distantly, that I’m creating the flow. I suspect in all of this that some veneer has been scraped off me and something more raw, and perhaps more visceral is revealed. There are times I feel a bit like an outlaw with no real concern for what people think, and so I act accordingly. It seems to be alluring combination, and I enjoy the physicality of it – doing, not thinking; reacting, not feeling. 

I’ve noticed even in how I talk. I’ve always been a good wordsmith. Works normally come easily and quickly to me, and often I take a great delight in speaking them. There are times now when the words trip easily off my tongue smooth and clever. Equally though there are regular occasions when the words seem to stick in me. I know what I want to say but they come out in a jumble, or don’t come out at all as I forget the key word just as I’m about to pronounce it. I feel awkward and awfully confused as it’s not something I’ve ever suffered from before. 

Strange times indeed, including a girl at work who seems to have fallen hard for me. Thankfully I’ve enough common sense left to avoid her like the plague. There are some things I just don’t want to get involved in.
 

Related articles by Zemanta

• Choose Your Feelings (teabreak.pk)