Posted by: Kim | 11 May, 2008

The never-ending fear

To be forewarned, this is somewhat of a depressing post and is more of a rant than anything else. I wrote to get the thoughts out of my head, hoping in some sort of naïve way that once gone they will disappear from within there, never to return. I know that’s not possible, but it’s nice to dream occasionally.

One minute I’m going through life as best I can, allowing myself to dream of the future, and the next I’m completely despondent about it all.

I can’t seem to get through this funk that I’m in at the moment. I can’t get rid of this never-ending thought that sometime soon the cancer is going to rear its ugly head again and be like ‘Gotcha! Thought I was gone, didn’t you? Idiot!’

Occasionally before I’ve been able to stop it, tell myself that it’s not going to happen. I don’t think I’ve ever really convinced myself though. It’s more of a “Let her have her little fantasies” indulgence than any true belief that it isn’t going to come back.

Is this the same for every cancer survivor? Do we all suffer from this ‘intuition’ that tells us that either the cancer is going to come back, or it’s gone for good? I ‘knew’ that I was going to relapse from the time that I went into remission, but back then I was actually able to convince myself that I was being irrational. But was this actually ‘intuition’? Was my fear actual knowledge that I would relapse? More likely, I was scared that it was going to come back, it did and I then convinced myself that I knew it would.

I know I wrote in the last entry about being able to think past the fear to planning ahead for my future, looking at careers, thinking about children etc. But then I get into moods like this and I think ‘Why bother with any of that?’ And then I worry that I’m not ‘living life to the fullest’, whatever the hell that means.

I’m scared that I won’t reach my 21st next year, but I’m trying to think about it and convince myself that it will happen.

I always hear the stories about others who have gone through the same thing, only to have it fail weeks, months, years later. I haven’t met anyone who has had a successful transplant, not in real life anyway. I know they are out there; my mum came home last week with a story about meeting a woman who had a BMT 8 years ago. Her husband-in-law had a BMT 10 years ago. The woman wanting to meet someone who had been through it before is actually how her sister and husband-in-law met. And I’ve spoken to a few people on the internet who are further down the track than I am. So I know that it’s possible.

In my actual experience though, my real-life one barring what I read on the internet, I haven’t met anyone who has survived. True, I haven’t met that many people because in a form of self-protection I kept to myself quite a bit when I was at the Royal Melbourne. The transplant failed for the two women I did make friends with though. It failed for the three men whom I was closest to at Peter Mac. It also failed for my friend whom I met through CanTeen.

So I’m left thinking, after all of these, why should it work for me? Why am I so special that it will do its magic for me? And I can’t think of an answer. So I’m left depressed and despairing that the transplant will fail and the leukaemia will come back.

Posted by: Kim | 5 May, 2008

Future careers

Over the past few days I have been obsessive in researching new courses and career paths. The urgency with which I am delving into this is relatively unnecessary at the moment, considering that I won’t be changing into a new university course until next year at least. I could call what I’m doing procrastination; after all, it is the prerogative of every student to put off assignments and study that they really should be doing with pointless tasks. Somehow, though, I don’t think that’s it.

It is only recently that I have finished ending every future-looking comment with the silent proviso ‘if I’m still here, that is’. A few weeks ago Dad was talking about a family reunion involving my immediate cousins in 2011. “Oh that sounds like awesome fun!” I exclaimed whilst thinking, ‘if I’m still around for it’. Morbid, yes, but I couldn’t help it. It popped into my head without warning, and still does occasionally. I’m sure that I’m not alone in this, that many other cancer patients suffer through the same thing. It is disconcerting nonetheless.

The idea that the leukaemia is going to come back and hence kill me off is far less pervasive than it has been in the past few months. It is still there, to some degree, and I don’t think that it will ever entirely disappear. But I’m now able to think ‘well, if that doesn’t happen then what am I going to do?’ and I think that’s what’s really motivating this frantic research. I believe that my future is now undecided (i.e. I’m not necessarily going to die) and so I’m worrying about it. I’ve hit the stage that most people hit when thinking about uni during year 12 – only 2 years later than normal.

Before I relapsed I had a relatively clear idea of where I was heading. I was going to study Social Policy and International Studies at UNSW, majoring in Development so that I could then go work for an international non-government organisation. I was going to campaign for refugees, organise better policies for social development, and in general fix all the problems of society that I could. How very noble and idealistic of me.

My relapse changed all of that though. Not only did I have to postpone studying at UNSW, I had to seriously rethink what I wanted to do as it wasn’t really feasible for me to live and work in a developing country anymore. I need to live somewhere where I can have regular check-ups, access to modern medicine and a quick reaction time should anything go wrong.

On that note, it has just hit me how supremely lucky I am to have been diagnosed as someone living in Australia. Of course I have thought about it before, but more in a vague off-hand manner. If I was born and living in Africa, I would most likely be dead by now. Quite possibly without having been diagnosed.

Even as an Australian I am extraordinarily lucky. I’m a daughter in an upper-middle class family who live quite close to the city. My mother was able to afford to take the time off work so she could be at hospital with me everyday. I was able to go home to my actual house when I was allowed time out of hospital, because we were close enough to come back quickly if something went wrong. We have private health insurance, so the cost of treatment and the numerous medications didn’t add an extra burden to an already shit situation. Though I may be unlucky to have this disease, I am a hell of a lot luckier than other people.

Anyway, back to the topic at hand. Relapse shattered my idea about what I was going to do with my life. It left me uncertain and clutching at straws about what was important to me. It also raised a number of other factors that I hadn’t really considered before. Losing the ability to have children has, in a cruel and somewhat ironic twist, made me certain that I want them. And so, I will have to have a job that enables me to pay for either IVF or adoption. Not only that, but in the case of adoption I have to have an acceptable (i.e. stable) job. There is also the issue of health insurance. At the moment I’m still covered under my parents’ private health insurance, yet when I strike out on my own I will have to pay a premium to get coverage for my ‘pre-existing condition’. I expect to have to pay through the nose for this, and therefore again need to have a relatively high-paying job. So uncertainty about what I want to do is compounded by the knowledge that whatever I do, it has to be permanent and it has to be pretty well-paid. These are things that are entirely too practical for a 20-year-old to be thinking about and yet this is my reality.

So what career can I follow? Living and working in a third-world country has been ruled out, and to be honest I have now lost the passion necessary for the aid and development industry. Does this make me a bad person? I hope not.

Immediately after finishing the bone marrow transplant, I had the idea of working with young people who have cancer. This was more of an idle thought than an actual plan, as I was still in the phase of believing that it was only a matter of time before the leukaemia would be back to take me down. But it was a possibility of a career and it fulfilled my self-imposed criteria of ‘helping people’, though my certainty that this was what I wanted to focus on was fading. As time has passed, however, I have discovered that emotionally I would not be able to work in this field. I am not strong enough to build relationships with people only to watch them die. Though this may be an extremely morbid and yes, stereotypical way of looking at it, this has been my experience so far. Every single person that I became close to in hospital has died. I don’t know why I am the one who hasn’t, and I think I will save that discussion for another time. But as it stands I can’t, and I won’t, subject myself to that over and over again.

So this is where I am left. The idea of a full-time career revolving around ‘helping people’ has now been discarded, though I am definitely not opposed to volunteer and pro-bono work. I just think, at the present time at least, that I am not emotionally strong enough to deal with the problems that come with working in such fields. I have new criteria of ‘stable’ and ‘well-paying’, as well as the old criteria of ‘interesting’ and ‘enjoyable’.

I am keeping a list of any career that remotely interests me – print journalism and event management are the two topping the list at the moment. I use most of my time researching courses that lead to these careers, or thinking about how I can arrange a university course to accommodate the possibility of either career at the end. Not to mention wrangling with my parents about the idea of getting into ‘event management’ – apparently they believe that it would not be ‘intellectually stimulating’ enough for me.

But it is getting to the point that I need to either make a decision or take a break from this. I am stressing myself out, believing for some reason that I am not skilled enough to get a job in either profession though I have nothing to base this fear on. I am worrying about money for things that I’m not even going to have to look at for at least another five years. I am putting off assignments and study that I am going to regret not doing when I have to cram it all in the day before it is due. But I can’t help myself.

Posted by: Kim | 2 May, 2008

‘Appreciating my post-cancer life’

It sometimes makes me so angry to hear people talk about the fact that they appreciate life so much more because of their experiences with cancer. They ‘no longer take anything for granted’, they ‘see the beauty in everything’, they ‘don’t waste any time’, they ‘live every day as though it were their last’, blah blah blah. If that’s how you want to do it, fine. But don’t then tell me that I should be doing the same, just because I too have had cancer.

Don’t get me wrong, I am thankful to be alive. I’m extremely happy about that fact. But I think if I lived every second of every day in some sort of hyper-aware and loving-every-minute mode I would burn out in a week. Probably less than. I just can’t do that, especially at the moment. I need to get sad and angry that I had to go through this. That I am still going through this. There are days where all I want to do is curl up in a ball, shut myself away from everyone and bawl my eyes out. This is one of the ways I deal. And it’s OK, I can accept that of myself. I also have the days where I will be walking along the street and just break into a huge smile, because everything looks so pretty and I’m happy to be here. It’s a bit of a balance.

But I’ve recently come across a lot of people who, in their comments, have basically berated other cancer patients for not ‘living every moment as though it were their last’. This really pisses me off. What does ‘living every moment’ even mean? Does it mean that I now shouldn’t watch T.V. because I’m not truly ‘living’ if I’m sitting mindlessly in front of a box? I don’t want to be made to feel guilty for bludging in front of the telly to watch So You Think You Can Dance. I like that show. Watching that show is how I want to spend my Sunday night. I may be ‘wasting my time’ but it is my time to waste, thank you very much, and since it is my life in which I have been given the ‘extra time’ I will do with it whatever the bloody hell I please.

And surely they don’t appreciate everything that happens in their post-cancer life. What about the stuff that really pisses them off? Do they appreciate their dinner being interrupted by telemarketers? I’m sure as hell not appreciating the fact that I have a giant and painful wound just above my ass that has to be dressed every day for the next month. Even if it is happening after I survived cancer.

And does appreciating everything mean that I’m not supposed to get pissed off that my friend doesn’t call when he says he will? Or agonise that my jeans don’t fit properly? Or get upset over a bad mark for something I worked hard on? Some people are telling me that I have been through a life-threatening illness so therefore I should no longer worry about such ‘insignificant’ things.

But that just doesn’t make sense to me because these aren’t insignificant things. These are ‘normal’ things that make up a ‘normal’ life, or at least they are in my version of a normal life. I’m not going to turn into some modern-day Buddha that rises above all such petty things simply because I have had cancer.

The whole reason I went through treatment is so I could keep on going with life. This includes getting mad and paranoid and obsessive and jealous and upset and depressed and self-indulgent and any other ‘petty’ emotion that some people have suggested should now be banished from my post-cancer life. I may be able to shrug off a lot of things more easily than other people and I do keep what I call a ‘cancer-perspective’ – i.e. this isn’t nearly as bad as cancer. But I do still feel all the ‘negative’ emotions and I want to. They are a part of life and I don’t think it’s healthy or normal to suppress them.

I have just turned 20 years old. To expect me to live the rest of my (hopefully) long life in some state of permanent bliss is plain stupid. So to everyone who tries to insist that I should be ‘living every moment as though it were my last’ and ‘not letting the small things bother me’, feel free to do that yourself but please excuse me while I throw a temper-tantrum over the fact that my jeans don’t fit.

Posted by: Kim | 1 May, 2008

Starting Off

I have never really been one for keeping a blog. I’ve kept diaries (plural, because I will start one, write for a few months before forgetting about it, and then start a new one) for pretty much my entire life. The thought of being so open and honest to strangers, let alone to people I know, has always scared me a little bit. But this is what I will attempt to do in this blog, for one main reason really.

I’ve found very few blogs that I can relate to with the whole cancer experience. A lot of them will post whilst going through treatment, but then trail off once they have finished and treatment is over. But for me, it’s the dealing with life post-leukaemia that I am finding supremely difficult. I’m struggling to fit together the pre-cancer me and the post-cancer me. So this is one way in which I am attempting to do that, and hopefully my ramblings will be of use to others going through this whole cancer thing. Which is why I am going to be completely honest in this. Well…most of the time anyways. About the important stuff.

So yes, that’s why I’m doing this. I can’t guarantee that this is going to be interesting or even helpful to anyone but me, but if you are dealing with the whole cancer thing then I hope that you get some kind of benefit out of this. Or if you have dealt with it before, you might be kind enough to relay any advice or thoughts that got you through.

So for now, au revoir mes amis! – That’s my first year uni French kicking your ass 😉