I was rarely asked questions delving into the finer details of my experiences with chemotherapy. Often, the questions I did answer only scratched the surface of a convoluted topic. Yet, ironically also served my self-esteem with a reassurance that, despite the lackluster inquiry, the person I conversed with did care:

Them: How is treatment going mate?

Them: (Regardless of duration lingering. )Not long to go now!

The subject quickly passes its use-by date and is changed to something easier to digest. It doesn’t make me upset that people don’t linger on the issue. I’d do the same; somehow it’s ubiquitous and unspoken that the the general social rules of cancer follow a similar format to that of ‘Fight Club’ i.e. “Rule #1, Do not talk about it.”.

Simultaneously, it’s important to note that the conversation and its direction was defined by whom I’d be speaking to about it. If it was a friend, they’d want to express their concern but move on swiftly out of consideration, due to Rule #1; because surely the last thing a chemo patient wants is to talk about it. This was where personality added colour to an otherwise greyscale issue. Personality, being the word I use to describe my inability to recognise when to put my foot in my mouth or, alternatively, my ‘openness and acceptance’ about the issue.

The double edged sword that is ‘honesty’ usually plays the protagonist in how these conversations usually become delicate and uncomfortable.

At first I was quite open and in my defence, unassuming, about the forbidden prevalence surrounding the issue. I thought the best way to deal with my illness was to be unreserved about my circumstance, if not for the sake of my own self-esteem but for my family and friends. ‘Courage in the face of adversity’ is a notion I’ve tried my best to adhere to. This may sound very well and good for me, but the bottom line was that people quite simply just weren’t ready to hear about it. People whom this affected the worst were those who had no idea of my situation and would part-take in a conversation which was destined for disaster; imagine the verbal equivalent of Hiroshima. Cancer; The all consuming conversation killer.

This presented me with a dilemma; continue to maintain this air of resilience at the expense of conversations which would almost certainly lead to an uncomfortable silence , or, evade any reference even remotely linked to current happenings. I was and still am explicit about pity and my lack of need for it. At the same time greatly value the support that has been provided to me by family and friends, both local and remote, has motivated me through times where ‘courage in the face of adversity’ were nothing more than words engulfed in the stench of cliché.

Aspects of chemo affected my day to day life and as a result, it came up in the most uninteresting of conversations eg. “I can’t do pizza, I have to avoid cheese this week(due to medication)”. I’m not seeking attention, just stating a fact. Those who know me well know of my love for pizza, so retrospectively it’s hurting me more than it hurts you.

To the curious bystander, the new acquaintance, or someone looking to make small talk and is none the wiser, they probe; ‘Why can’t you have cheese?’.
Sure, it’s an innocent enough question but after a few experiences, I’d stagnate upon hearing this, I knew where this conversation was heading, and it wasn’t going to be pretty.
People don’t like asking a question not knowing that the final answer is; ‘I’m on chemo’ or ‘I have cancer’. I’d hate it too.

Initially, I’d be blunt, say I was on medication that prevented me from doing so and if the conversation went any deeper, I’d confess.

I altered my approach towards the end of treatment; I’d weave in and around the topic careful not to say too much, reminiscent of a politician afraid to commit to policy. It’s brought about from my fear of what I coined ‘that sequence of questions’ which culminate in me cornered and leave me no option but to come clean. I find myself dodging and ducking to preserve the persons humility rather than just being honest (though let’s be frank, I hardly relish reiterating the lengthy chain of events that resulted in my diagnosis and relocation).

Telling people I’m on chemotherapy because I was diagnosed with Hodgkins Lymphoma is easy enough. It’s damage control that is the challenge. The desperation to salvage the remnants of a conversation is tragic but sometimes sadistically humourous too:

Me: “Well actually I was diagnosed with a type cancer so I’m currently on chemo right now. Which is why I can’t have cheese/drink alcohol/etc./Which is why I relocated back to Sydney.”

Me: “Don’t worry man. I think you’re going to make it.”

Whilst the above didn’t happen frequently, I wish I could say it’s far from exaggeration and added dramatics.The truth is that the above is exactly how someone has responded.

By the end of the conversation not only am I comforting someone else for something they don’t have but am also wishing I had woven a far more complex web of deceit to avoid this.

Herein lies possibly where I felt that maybe I needed to draw the line; perhaps the moment where I needed to stop and say quite simply and bluntly that it would probably be best for the both of us if we don’t go into it.

My downfall in these conversations lay in my brutal honesty, my defiance amidst the circumstances, acknowledging that I wasn’t as healthy as the average person, but essentially getting on with it. Further, it was unaided by the self-consciousness I inherited from losing all my hair due to medication which, as a result often compelled me to justify why I looked the way I did(ie. In case you’re wondering why I’m bald and ugly etc.), further complicated by the the fact that in the past ten months I’ve done little else aside from focussing on getting better, leaving me with a limited spectrum of talking points, particularly with new people.

Essentially, I feel it boils down to a single simple notion. Based on my experiences, I’ve gauged that people can generally be viewed in two distinct groups; one oblivious to the fragility of their existence and the other, well acquainted with this fact. Those who have gone through their life without a genuine threat to their existence or ones close to them and the other; realists all too familiar with how complicated our lives can be.

For me, life means more now that it ever has before.

~~~

This will be my final post. I want to thank with immense gratitude my Mum & Dad and Amar, without whom I wouldn’t have be able to overcome this.
- Ash for her support.
- My aunts, uncle, grandparents, cousins. For coming to hospital, chemo, bringing me chocolate.
- Ash’s family
- Qube Konstrukt, my old colleagues.
- Reactive in Melbourne and Sydney, for allowing Ash travel so often to visit me.
- My friends here and abroad, for keeping me sane, strong and occupied.
- The internet (YouTube, Facebook, Twitter). I’ve stalked you all.

Hope to see you all soon.<3

Love,
Karan

Radiotherapy began last Tuesday and it’s been going swimmingly.

To say that it’s been a lot easier than chemo is an understatement; if you’ve read my previous posts you’ll have established that chemo is nauseating, demanding and arduous. Contrasting to this, radio is swift and thus far painless, most of the time of the trip to therapy at Westmead is absorbed by the search for a car park.

Nevertheless, it’s hardly sunshine, lollipops and rainbows. I recollect that on my first day of treatment, I felt sick. Mainly due to the fact the psychologically, the scenario was reminiscent of chemo. Alarm goes off, get ready, jump in the car with Dad, go to treatment. What almost pushed me over the edge is the journey there. Whenever I’d travel to chemo, the imminent needle and pending exhaustion were both thoughts that danced in my head. Nevertheless, after day one was done my mind was at ease thanks to the friendly nurses.

A few people have been asking what it involves so here goes:
Upon arrival to the Cancer Care Centre at Westmead, I check in and wait around for my name to get called. When I get called in I’m taken to a change room to change into a hospital gown. Seeing as though it’s focusing on my chest I just need to remove my shirt.
When they’re set up in the radio room, they call me in and get me to lie on a bed which moves in pretty much every horizontal position possible. Using the (frickin’) laser beams they line me up based on my tattoo. Most of the time spent in the room is spent by them setting me up, relaying measurements back and forth to one an other down to the millimeter.
When they’re done, they all leave the room, shut the door and the machine goes to town on my chest for about 20 seconds. It then rotates and does the same to my back and that’s it. I get changed and carry on with my day.

Meanwhile………….

Nearly there!Home stretch!Mad Love,KPS. I have eyebrows! Expressions are my tool.PPS.

My first month post-chemo has been somewhat invigorating.

It’s been uplifting psychologically. During chemo there was a routine reminder implanted in my head that my next cycle/visit was imminent. I suppose the nausea and lethargy were only temporary affects in comparison to the constant weight on your mind of having to return, the dreaded thought of them not finding a vein the first time, the daunting number of cycles left, the unspoken agony of having to sit through another blood transfusion and so on.

It’s cliché to admit that to no longer dwell on these premonitions is “a huge weight off my mind” but I can find no words to better describe the immense feeling of relief. The freedom of being able to freely eat without thinking, the sweet taste of beer, and perhaps most special; the journey in re-growing my long lush mane are all things that I’ve taken for granted or hardly thought twice about in the past, but cherish now more than ever. Oh hairy hairy mane.

For now I’m savouring the temporal thought that whilst a lot of us may yearn to be elsewhere doing something more exciting… I just want things to go back to normal.

This week saw me visit the Radiologist at Westmead Hospital where I’ll be receiving treatment. The call to notify me that I was up came as a surprise as we were prepared for up to a five week delay due to extended waiting lists. I’ll really happy to say that I begin a three week course of Radiotherapy from the 22nd of June.

Capt'n Snooze's Latest Range

Above are some photos I asked the Registrar to take whilst in preparation. What you’re seeing are them about to place me into a CT scanner which measures the densities in my body. Radiotherapy is complicated and potentially damaging; the scans are performed so they know exactly where to radiate without damaging other organs. The lasers are guides to set my body up based on their template.
Finally, when they’ve completed a scan they tattoo dots onto the patient to let the radiotherapist giving the treatment know where to aim the rays. They don’t exactly use a tattoo gun but they use a needle to break the skin so that the ink will stay. I received one dot on my chest which just looks like a felt marker dot(despite my requests for dragons). It’ll be there for about three years.

Peace! <3
Karan

Ps. I hope the photos don’t freak you out. It is what it is and I thought it’d be worthwhile to share.

Click for a closer look.

Above is a comparison of CT scans I did in November of 2009 and last week.

The view you’re looking at is one section of my chest(kind of like one slice from the loaf of bread that is my body)  .The faint grey mass in the top section is the Hodgkin’s Lymphoma. The black areas around it are my lungs which maybe explains why I was suffering from a persistant cough. The May 2010 image shows that the mass has resolved, though there is still some residual/scar tissue. The doctor explained that with Hodgkin’s Lymphoma, this normally happens as chemo never really removes everything. Radiotherapy, which is to start in a month is to target these remnants. The white glowing bits in the centre show my heart and oesophagus which were previously being compressed and hidden by the cancer.

I’m really, really happy. That just about sums it up.
Love!
K

Hooray! With 7 cycles done, I have one more bout of chemotherapy remaining and to be frank, it couldn’t have come any sooner.

In retrospect, I can’t really decide whether it’s gone fast or slow as the past 6 months have proven how fast or slow time can travel depending on circumstance, which really is a fancy way of saying that it’s usually against you.

I’ve been lucky though. I’ve heard stories of people being on chemo for 4 years, if not longer. I can’t even imagine what that would be like, 6 months was tough enough, and that’s saying very little.

So what happens now?
Chemo is complete in the second week of May. According to my oncologist, I get about a month off before I begin radiotherapy as they don’t want to rush into it. Whilst I’d love to get it over and done with, a break is going to be welcomed before I start more treatment. Mind you, radiotherapy, I’ve been told isn’t nearly half as bad as chemo.

I’ll be doing a post chemo CT scan on two weeks and if all goes in my favour, it should be negative like the one I did in January. This prompted me to ask the doctor what the chances are of something like this recurring. There is a 15% it could return, and should this happen, it’s still quite treatable though second time round, treatment would be more intense.

This past week has been great! Ash has been in town and we went to Canberra along with Mum to visit my brother, Amar and some cousins too. Again, it was Canberra, but I can’t emphasise how much value a scenery change has.

Cycle 8 begins bright and early tomorrow. Let’s do this thaaaaaaang.

K

PS. Also I wanted to share this. It’s a guy who’s stuck in quarantine in a hospital because he’s got TB(tuberculosis). To keep himself busy, he’s started making these videos. I’m sharing because before they diagnosed me, I too was in quarantine because they thought I too might have had TB and its a nightmare. Anyone who visited me during these 10 days remembers having to wear plastic overcoats and masks when in my room. Lame.

Article on him from Sydney Morning Herald

YouTube Video ‘Life in Quarantine’

Anger and frustration have settled in usurping the throne previously held by acceptance and patience. Or maybe I’m just in a very shitty mood.

I guess I’m running out of things to do; the internet has become a small and all too familiar place that now I’d rather  not be on the computer despite it being on for most of the day. A lot of it also has to do with the fact that I work from home, a big no-no as home and work should be kept separate, but a decision I currently can’t manoeuvre around. Without trying to sound melodramatic it feels probably what a prison sentence would feel like: essentially I’m just waiting for my release date. Man, gaol must be boring.

All that being said, this isn’t a cry for a help. I’m just venting.

On the positive side on things, April has arrived! I’ve literally just got to make it through this month and then I’m in the clear. My last chemo i.v. day is in the first week of May, but I’m going to cheat and count down April. It’s easier this way. So what happens when chemo is over?: according to the oncologist I get a month off before radiotherapy starts, which at first had me disappointed, and frankly still does(I just want it all over and done with), but I guess I earn a small break in monotony and sobriety which can’t be too bad. Radio is going to happen everyday for 3-4 weeks, not including weekends. No where near as bad as chemo, almost no side effects, just a powerful x-ray zapping some cancer cells into oblivion for a short period of time everyday.

Last week I shaved for the first time in 5 months. It was kind of like the first time I ever shaved; think high school, the hair on your face isn’t rough, but baby soft. Needless to say, I felt like a new man and it needed to be done because the stubble was breaking a whole new level of sleaze. Good times.

I also did something called a Lung Function test this week. It involves a lot of intense breathing and exhaling. I did one right before I started treatment because one of the medications, Bleomycin, messes with your lungs. I think my capacity was down 8% as a result. The doctor said it was okay and would only be a temporary drop. I was a bit more concerned about the “reduce goals by 15% due to race” printed on the sheet. Apparently, Indians aren’t so crash hot at breathing.

That is all.
Hoping you’re all well
K

Cycle 5 has been good; things feel like they’re moving more swiftly after reaching the halfway point. It also really helps when I have things to distract me.

In comparison to the previous cycle; the nausea hasn’t been as bad; oh it’s still been there, just not as bad. It usually has a habit of rearing it’s ugly head as I arrive at the clinic for chemo; something about the smells, sights or the imminent needle makes me gag. But it’s been tolerable these past times.

The weekend before last, I travelled to Canberra with James to see my brother as well as Lupe Fiasco in concert. It really really good to be out of the house; look at me getting all excited about Canberra; either way, that as well as having Ash visit this last week has kept my brain from collapsing upon itself from boredom and monotony. It’s really nice when she’s in town; things are that much more bearable.

In other news, I’m growing hair. Beard hair.
But not that manly beard hair. You know the kind of hair you have as a teen until the first time you shave, it’s all soft and cushy. It’s growing. What’s funny is it’s longer than the hair on my head. Either way today it’s started falling out again, so it totally got my hopes up.

That’s really all, I wish I had more exciting things to report but I guess under these circumstances, no news is good news .

Hope you’re well.
K

Sorry it’s been a while since my last post. Just been trying to keep myself in a state of busy even if that means procrastination. I realised that this free time I have now is probably not going to be repeated until I’m a retired old man so I might as well make the most of it.

This cycle has been pretty crappy. Possibly the crappiest thus far, I don’t know why, but the nausea this time was worse during the first week of treatment and to make matters further complicated, I had to get a blood transfusion.
I came into treatment on Day 1 of Cycle 4 and was told that my red blood count was low and if it went any lower, they would probably have to give me a blood  transfusion. The reason for the low blood count was probably because of the chemo and its destructive nature. In an attempt to counter it, I was told to eat foods that would increase the cells i.e. brocolli, red meat, chick peas etc. I tried. Nothin’ doin.

So sure enough the next week, I got the news that I would have to have just under half a litre of blood infused over six….that’s right six, hours. I wouldn’t have gotten through it if I hadn’t taken my laptop and burnt through an entire season of Entourage. Speaking of which, I’m looking for a friend in a movie star/musician who’s willing to buy me an Aston Martin on a whim.

I’m hoping I don’t have to do it again; mainly because I’m out of Entourage seasons. Fingers crossed, but I guess they won’t rule something like that out.
It’s also made me come to the upsetting conclusion that I probably shouldn’t travel to Melbourne during treatment. I was really hoping to go visit Ash last week but then this came up and now because my immune system is the piddly thing that it is, I’d had to catch a cold off some guy on a plane and end up in hospital with an infection. So quite simply; no travel until May .

Cycle 4 though! Halfway. That’s got to be encouraging!

In other news, I’ve finally finished my website and got some fresh work up! If you’re bored at work check it out http://www.wakeupmrsingh.com

Peace!
Karan

A quick post.

Saw the oncologist today who had the results of my PET scan.

“There has been an excellent metabolic response to therapy….”

Overall, I’ve responded well to treatment and as a result the doctor stopped short of offically calling it a “negative” scan. He needs to consult the board of doctors who look after cases of Hodgkins lymphoma before saying any more. He has, however, reduced my chemo dosage from the ‘escalated’ version of treatment to the ‘baseline’ version which is great!

I think I’m probably still going to have to complete the full 8 cylcles rather than cutting it short but I gues that’s ok.

Hope you’re well
Karan

Hello all!

Guess it’s that time to update the blog with some progress as to how treatment is going. I’ve had a chance to reflect this past week especially because I had my PET scan last Friday; the last time I had a PET scan was right before I started my chemo and I was just comparing how I felt before and I after these two tests.

In terms of symptoms I had related to the cancer:
- Exhaustion – In Melbourne, it’d get to 11am and I’d be tired at work. I think at one point I was drinking one of those Mother energy drinks everyday.

- Insomnia – I was sleeping horribly because I would get night sweats and often have the fan on even if it was 10 degrees outside.

- Cough – This came and went, but was primarily how the cancer was caught because the lymph nodes were pressing down on my chest. I’d have little coughing fits after eating or drinking.

- Itchiness – This was the worst. It started a long time ago, but got worse and worse. I’d just be ridiculously itchy and even went to a dermatologist who prescribed me some funky cream which didn’t work.

I’m really happy to say that these four main symptoms have cleared up, and I think I noticed differences after the first cycle of chemo. I’m sleeping beautifully, and am back to my “stay-up-til-2am-for-no-reason-on-the-internet” ways. I’ve got all my energy back with certain restrictions, I’m trying not to over exert myself but I definitely feel a lot more alive. The cough has completely disappeared and as for the itchiness, I am so relieved to have it gone. I don’t know how I lived. I used to itch like that crack head Tyrone Biggums.

I guess it’s all well and good but I probably shouldn’t get ahead of myself. I’m still on cycle 3 of 8 and have quite a way to go. Next week, however, I’m seeing the oncologist who, based on the PET results will give me a progress report, let’s pray for good news. If all goes well, he plans to reduce my chemo dosage!

In other news, now I’m told my veins are tricky. I guess I’ve been stabbed so many times that it’d probably happen. I’m a little upset, mainly because this blog is called “You Have Nice Veins”; don’t they know how hard it is to come up with a witty name? Sacrilege I say.

In news not pertaining to my veins, I’ve been entertained over the last couple weeks with postcards and packages from you guys sending your love. I’m so overwhelmed with your support that I can’t really explain how much it helps. I’ve got a lot of spare time on my hands now, you’ve probably seen me loitering online on msn or facebook or depthcore a LOT, but this really makes my day. That and also the constant messages and emails which keep entertained and my mind focussed on the goal of visiting lots of you sometime this year wherever in the world you may be!

I’ve also been kept busy with some freelance projects which are just finishing up now. It’s great to be working again and I really enjoy the whole “make-your-own-hours” thing. Anyone who knows my sleeping habits knows that there’s enough said there. I’ve also submitted some work for a design competition going on here in Australia. Please vote for me if you have a spare moment, you don’t have to register!

That’s roughly it! Hope you’re all well and enjoying 2010 thus far.
Mad Love,
Karan