The C Word

CT scan (and life’s little accidents)

I wasn’t originally going to write about CT scans as I – for some reason – thought of them as rather commonplace. However,  after having one yesterday I realised that this is of course a ridiculous view to have. I’m sure most people out there have never had one. Furthermore, they are definitely worth writing about

I’ve had a few CT scans now over the past several years, and the experience has always been just about the same each time. The first involves this:-
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Settle down. That isn’t my pee in a cup. It’s stuff they call ‘contrast’ mixed with some orange cordial. You are made to drink 3 cups of this over roughly 30 minutes before the scan starts. This contrast obviously assists the scan by showing up in the scans rather well… or something. It’s been a while since anyone explained its purpose in detail, but I’m relatively certain we’re not being made to drink it just for fun. It doesn’t taste great, but it’s far from the most disgusting thing I’ve ever tasted (thank you, original recipe Mother) so this isn’t at all difficult

The next part presumably depends on the area of your body that requires the scan, but for me it has always been my torso and I’ve always been made to wear these snazzy pants:-

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After you get you changed, a nurse will stick a cannula into you, like so. This is to inject you with some other dye just before the scan starts. This dye (which probably isn’t regular dye, in case you were wondering) can cause a rather hilarious and awkward sensation, but I will come to that shortly.

You are then taken into a room with the machine itself. I failed to get a photo of the machine, but it’s similar enough to the PET scan machine that you can probably refer to that. It’s basically a giant doughnut with a bed/stretcher that slides through it back and forth as required. Due to the nature of my scans, I’ve always been made to lie on my back with my arms over my head, feet towards the doughnut part of the machine. The technician then runs me through to perform a few tests and then the fun really begins, as the dye is injected into you via the cannula.

The sensation I mentioned earlier is basically one of warmth, which starts in your arm, and works its way towards your head and then down through your body. It’s actually a rather nice feeling. That is, however, until it reaches your crotch area. The warmth stops and lingers here, and there’s no way around it – it feels like you’ve wet your pants. And given the stylish pants they’ve made you wear, that would indeed be a tragedy. The nurse/technician should have told you in advance about this sensation, but it doesn’t really matter. It feels incredibly awkward anyway. Worse still if the nurse/technician failed to warn you, and you think you actually did (this didn’t happen to me – but I know of two people that it did happen to). Hilarious for everyone else, but bad for them.

If you ever have a CT scan and you aren’t warned in advance, hopefully you remember this blog post. If not, we may all have a good laugh at your expense, I’m afraid.

Bone Marrow Biopsies (and 99 other things to avoid experiencing before you die)

I have now had two bone marrow biopsies in my life. The first was over 5 and a half years ago, and the second was yesterday. They were both very, very, different experiences. As such, I feel the only way to give the ‘bone marrow biopsy’ an appropriate run-through would be to describe both of them.

To start with though, I’ll give you a short run down as to what a bone marrow biopsy (at least in both examples that I’ve had them) entails. Basically, whilst you lie on your side, a doctor shoves a needle into your back (your pelvic bone, to be exact) and extracts first some fluid and then a solid piece, which feels like the doctor is removing a small slither of your bone, the size of a match stick. (Technically, I’m describing two different things, but they’ve always been a package deal when I’ve had them done – so for a better explanation, see here.)

Now that you have a basic idea of what the procedure actually is, let me continue with the two examples, which were two very different experieces. I will say this though, if you need to have a bone marrow biopsy done any time soon (or if there’s a likelihood that you’ll ever have to have one done) I would skip the first example. It is not going to be pretty.

Bone Marrow Biopsy #1

As I said, the first bone marrow biopsy I had was almost 6 years ago now. As such, my memory of the event isn’t quite complete – but I don’t think I’ll ever completely forget the experience. The procedure was not undertaken in a hospital, but rather in small side room within a private clinic. Not knowing what to expect, this didn’t send off any warning signals in my mind at the time. Due to the fact that I wasn’t actually in a hospital (I assume that’s the reason why) I was not given any drugs except for a local anaesthetic in my lower back in preparation for the needle.
I remember thinking when the needle first went in that they had accidentally poured whatever was in the needle down my back. However, it didn’t take long for me to realise that was actually my own blood. This thought didn’t occupy my thoughts for long however, as all thoughts quickly turned to how much pain I was in. To get the bone marrow the needle must first break through the bone, for obvious reasons. However, apparently I had had way too much calcium in my life as my bone appeared to be unbreakable. Two nurses/doctors/whoever they were took turns attempting to break the needle through my bone, without much luck. All the while, I could feel not only the pain of the pressure as they pushed as hard as they could against my bone, but also the pain as the needle slid across my bone after failing to push through. The best example of this I can give is to imagine pushing a pen down on concrete as hard as you can, and watch as it slips and slides on the concrete, not able to break through. Only, in this case, my bone was the concrete, and it is covered in nerves.
I was pulling at my hair, probably almost tearing it out, through the whole thing.
They finally did manage to break through, and once in the bone, in order to bring out the solid piece they need, they wedge the needle from side to side as they pull it out. This is, as you can imagine, also extruciatingly painful.
Finally, they managed to get the needle out – where they revealed to me that they had failed to actually get the required sample, and they would have to start over.

This experience lasted – I think (I was pretty out of it – not on drugs, but in pain) about 20 minutes and was quite probably the worst thing I’ve ever been through. It was bad enough that I cut back on dairy products in the hopes that my bones would become more brittle if I ever had to do it again. It was also bad enough that I joked that if I ever had to do another bone marrow biopsy, I would simply choose death instead. Apparently, though, that wasn’t the choice I would eventually make – as I had another bone marrow biopsy yesterday. I wasn’t looking forward to it, obviously, but in the end, these things are for our own good, and there isn’t really a choice.

Bone Marrow Biopsy #2

This time around, the bone marrow biopsy was to be performed at the Austin Hospital. That did give me some hope that they’d actually drug me up a little, considering that’s where I had had my two recent liver biopsies were (by the way, I had another one last week – it was pretty painful. I think I had convinced myself that the previous one hadn’t hurt as much as it did). This time around, I lay in a bed in the day surgery department and a doctor came around to me to explain the exact procedure. He also explained that I’d get some sedation and painkillers and it would not be like the previous time I had had the procedure. This did put me at ease a little, but what I didn’t expect was how little it actually did hurt.
When I was wheeled into the room, there was some rather loud piano music playing (a nice, unexpected, touch) and the doctor explained everything he was going to do before he did it. They gave me some sedation (not enough to fall asleep) and the only part that really hurt was the local anaesthetic going in (which is painful, but obviously it’s for the greater good). Honestly during the procedure there was very minimal pain and when the doctor told me he was done, I was shocked. He had me roll over onto my back so I could take a photo of the needle he used to pierce my pelvic bone, as I’d already told him, along with the nurse, about my blog. See the picture below.
Marrow needle (Medium)

So, as you can see, the two experiences were just about polar opposites of one another. Neither was an overly pleasant experience – but honestly yesterday’s bone marrow biopsy hurt less than the liver biopsies, which I never would have expected. I guess the moral of the story is – if you have to have something done – go to the Austin, because they actually know what they’re doing.

Side By Side

Last week I received a package in the mail from Collingwood Football Club. I had some indication that something was coming, as I had been asked for my address via PM in the BigFooty.com forums by an admin. I  currently have a thread on the forums dedicated to my situation, of which I have received a great deal of support. However, I still don’t know exactly who within Collingwood is responsible, so I don’t know exactly who to thank.

What I can do, however, is acknowledge this act of thoughtfulness and kindness, so that’s what I’m doing

I’ve been a Collingwood member since 2008 (the year I was originally diagnosed with cancer ). I told myself I’d become a member as soon as I could afford it – and it just so happened that the first year that I had full-time employment was also the year I knew I wouldn’t be making it to a lot of games, due to being diagnosed. However, I had told myself I’d get a membership when I could, and that’s what I did. I didn’t make it to many games in 2008, but was proud to have a season ticket regardless. I’ve had a membership every year since. However, I certainly don’t feel entitled to any special treatment or surprises by the club – considering I’m just one of 70,000+ (or is it 80,000+ now?) members, each with their own issues and hardships, many of them undoubtedly worse than mine.

So to receive a card and signed jumper (signed by the coach Nathan Buckley and captain Nick Maxwell) was completely unexpected and extremely appreciated.

Collingwood’s ‘slogan’ for the past few years has been ‘Side by Side’, an emphasis on the line taken from the club song. It’s acts such as these, and the support of the Collingwood fans and community at large, which have gone far to show that this is not simply a ‘slogan’, but something that is believed in and lived by the club and those who support it.

So I send a heartfelt thank you to the Collingwood Football Club (and the mystery person who initiated this gift) along with all those Collingwood supporters who have gotten behind me via BigFooty and twitter, despite the fact that we’ve never met.

Thank you.

Jumper (Medium) Card (Medium)

‘Spleen’ sure is a funny word.

I met with my doctor a couple of weeks ago now, who advised me that while there was no certainty, he believes that the ‘spots’ in my liver are indeed part of my Hodgkin’s Lymphoma. He then told me that I wouldn’t see him for 6 weeks, and instead I was to be sent to the Austin to be treated by the doctors there directly. He advised me that due to the nature of the cancer, and the fact that it has returned, the treatment this time around would be, as he described, ‘shotgun therapy’. It would be harsher than last time and fairly severe.

I have since met with a doctor at the Austin who wanted to meet me to see how healthy I was and explain the next steps. She is going to chat with the Oncology team, as well as the pathologists, to determine the best course of action going forward, and we are to meet this coming Thursday to discuss the plan.

She also told me that besides the ‘spots’ in my liver, the scans also showed spots in my spleen. This prompted two thoughts immediately:-

1. That’s not good. Cancer spreading to multiple organs is never good.

2. I have no idea what a spleen actually is.

We also addressed the fact that due to my category of Hodgkin’s Lymphoma being a rare type (that is, LP Hodgkin’s Lymphoma) which is also not known for moving into organs as mine has done, I am not a ‘text book case’ and they are actually somewhat unsure of what to do with me. Well, that sounds promising!

Apart from that, nothing much has really happened, apart from me taking time off work (unpaid sick leave), and discovering the extended wait for Income Continuity through my super company (a wait of 90 days before I can even claim) and a 3 week wait for processing of Centrelink payments even after getting everything sorted has left me basically broke and with no money coming in in the foreseeable future. Fortunately I don’t have any debts currently or this would be rather alarming. I can see how this could be very concerning for someone in a worse off situation than myself.

There hasn’t been any more tests, no interesting hospital experiences I can share, or anything much worth writing about – which is why it’s taken so long for me to update.

However, in order to give this post some sort of substance, I shall provide the following other updates:-

Update #1:

I got a new shirt! I got it from Hot Topic (and at the time thought some of the money was supposed to go to charity but I can’t actually see that anywhere, so I’m guessing I was kind of wrong about this*. Also, the postage cost 3 times more than the shirt itself, so that was a wise purchase. Still, I thought I needed it).
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Update #2:-

I stumbled across something that will help me deal with my eventual hair loss when the chemo starts. With this, no one will be able to tell anything is wrong.
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Update #3:-

I met Dan Aykroyd! Okay, so this isn’t remotely relevant to this blog – but come on, I met Dan Aykroyd!
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I’ll update again once something of relevance actually happens.

Stay healthy.

Shay.

*edit:- I have just stumbled across the tag for the F*ck Cancer t-shirt. On it, it gives details about the ‘Dyin 2 Live’ program which the benefits go towards. You can find more information here. So it turns out I wasn’t wrong.

Liver, liver, liver – you don’t treat me no good no more.

I had a liver biopsy 2 days ago, and it wasn’t what I’d call a pleasant experience. It was the first time I had had a liver biopsy or experienced anything like it, really. Last time I didn’t need one because the cancer was in my neck and around that area only. This time, the CT scan showed something ‘odd’ in my liver. It could be cancer, it could just be because I had pneumonia at the time of the CT scan, and the abnormalities could have been caused by my liver fighting the infection. At least, that’s what we’re hoping. However, better safe than sorry, so I had a liver biopsy done.

The letter I received in the mail about the liver biopsy made it sound like a pleural tap, which I had had recently due to the fluid in my lungs. However, when I arrived at the Austin Hospital I quickly discovered that the pamphlet was full of lies. The liver biopsy was absolutely nothing like a pleural tap.

The letter advised that they needed me to arrive at the Ambulatory Care Centre (the place for day surgeries/procedures that don’t require overnight stays) at 8:45am. As such, when they called me up the day before wanting to confirm that I’d be there at 8am, I was a little confused. It was even more annoying when I arrived at 8am to be told I wasn’t scheduled to have the procedure done until 9:45am. Not a great victory for the Austin there.

The first thing that happened was I was placed in a bed/stretcher and had a cannula put into my arm. This isn’t really painful at all (not for longer than half a second) and if you can’t take needles you’re not going to like the rest of this blog post.

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I then sat around for a couple of hours (thanks to the 9:45am start time) and was wheeled in my bed downstairs. As a side note, I imagine most of you have never been in an elevator while lying down before. It is quite a weird sensation.

I was moved into a little waiting room in the Radiology department, next to a bunch of people who had just had procedures done. Some of them looked a lot sicker than I did. Eventually I was wheeled into a small room where I met the doctor who would be doing the liver biopsy. I was filled in on what was involved (this is where I discovered that they were going in via my front, between/below my ribs, not via my back like a pleural tap) and that they’d be giving me sedation and painkillers throughout as needed (which sounded both good and bad at the time). To pick the spot they’d be going in, they used an ultrasound machine on me to find my liver. I took a quick snap of the machine they were looking at – though it’s not currently looking through my body so there’s nothing all that exciting on the screen:-

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I’d love to say that this procedure was painless, to assure anyone who has to have one that it’s a walk in the park, but if I start lying then this blog becomes fairly pointless. It was painful – but what I can say is that the pain only came in very short bursts. The needle injecting the local was painful, but that only took a couple of seconds and then I was numb. The actual process of taking a bit of my liver hurt – it felt kind of like a clamp had come down on something inside you and it felt a lot like the pain that usually comes when you get winded/punched in the stomach. But again, this pain didn’t last very long. It built up and made me clench my teeth and curl my toes, but right before it reached the point of being unbearable, it was gone. It did probably help that they pumped a little extra sedatives and painkillers into my blood stream throughout the process.

This whole thing was over quite quickly, and then I was moved back upstairs to my original location and told I had to lie flat for 4 hours. I was allowed to eat and drink after 1 hour, but if you’ve tried doing so while lying flat I think you’ll understand why I waited the full four hours before really getting anything substantial to eat or drink.

While I lay there, I wasn’t really in any pain. The nurses came around constantly to take my blood pressure, temperature, and check the wound, and ask how much pain I was in. There was another guy opposite me who had had the same procedure done just before me and he was in a fair bit of pain whenever he breathed deeply. I didn’t have any of that pain. I’m not sure if the drugs they gave me during the procedure took longer to wear off, or if I just got lucky.

That night I was in very minimal pain, same with the next day. It was completely bearable and only occurred occasionally.

So that’s a liver biopsy. If you have to have one, just keep in mind that while there will be pain, the pain is over so quickly you’ll barely have time to even register it. And these things aren’t for fun – they serve a purpose. Better to go through a little pain now to find out what’s wrong with you, rather than never know and have something very bad happen down the track.

I have an appointment with my doctor later today. I may not find out the results of the liver biopsy due to the short time frame, but we should have the results of the PET scan from earlier. Wish me luck!

PET scan (Up and Atom!)

Yesterday afternoon I had a PET scan at the Austin Hospital. This was the first scheduled test since the diagnosis of my cancer’s return (with the exception of a blood test).

This was the second time I had had a PET scan, and I knew what to expect. It’s completely painless and while it takes a couple of hours from start to finish, is probably the best scan to undertake, as the machine operators play music through speakers in the machine while you’re in it.  Also, unlike a CT scan, the dye they inject into you doesn’t make you feel like you’ve peed yourself (if you’ve had a CT scan, you’ll know what I’m talking about. If not, you’ll just have to take my word for that). The dye they inject is radioactive though, so I assume there’s some sort of risk of gaining superpowers.

I could go through the specifics of a PET scan – about how the ‘dye’ I mentioned is actually glucose and how the cancer cells use more glucose than regular cells so are attracted to it, causing them to show up in the scan, or something along those lines, but I’m really not here to give you the in-depth technical side of things. If you want that, you can click on the PET scan link above and go to the Wikipedia page or go somewhere else. All I can offer you, which is the whole point of this blog, is the personal side of things from the patient’s view. Also, photos of me in a hospital gown, as below:-

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The process of a PET scan is a fairly simple one, though it does take longer than all other scans I’ve had in the past.  The first thing that happens is that you are led into a small room with a bed and asked to get changed into one of the fashionable gowns I am modelling above. Following this, you’ll be asked to lie down on the bed, like so:

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You’ll then be injected with some radioactive glucose – a process that was so quick, I barely even noticed that it had been started. This also meant I didn’t get a photo of the process, or a photo of the protective shielding provided to the operator whilst injecting the dye. Apart from the very minimal pain of the initial needle prick, this is an entirely painless process.

Once this is done, time is required for the glucose to travel through you (and, I presume, to become attached to the cancerous cells) so you’ll then be asked to lie on the bed in the dark for an hour. The first time I did this, it was around 7am, so naturally I instantly fell asleep and the hour flew by. This time, being early afternoon (though admittedly I had just woken up) I stayed awake for the whole hour. When the hour is up, you’ll be asked to empty your bladder and head over to the machine itself for the scan.

I took a photo of the machine prior to getting on to it, so I wouldn’t need to describe it.

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I lay on the appropriate section with my head in the black cusion…thing, and my arms up above my head. It was comfortable enough to start with – though you must remember that you will be in this exact same position for around 30 minutes, so by the end I was less comfortable.

The PET scan itself basically involves you lying completely still, breathing normally, while you are moved through the machine about 5 inches at a time and then scanned for a few minutes before moving another 5 inches. Yes, this is fairly boring.

However, as I briefly mentioned earlier, the coolest thing about getting a PET scan (via the Austin Hospital, at least) is the option to listen to music while you’re in the machine. The music actually plays through speakers built into the machine itself. Last time I had a PET scan, I was told to bring a CD in. I took a Sevendust CD – and felt rather awkward once all the F bombs started blasting out into the room (I hadn’t thought that through). This time around, I took a safer route and suggested that they simply play Gold FM. Music certainly seems like a good idea, but there is of course a problem with this. I was actually told off for moving my foot (as this was affecting the images) due to the fact that I was tapping my foot to Lionel Richie’s ‘Dancing on the Ceiling’ towards the end of the procedure. They’re just lucky I didn’t start singing the first song that came on – REO Speedwagon’s ‘Keep On Loving You’.

When the scan is complete, you’ll be asked to wait a couple of minutes while the images are checked, and then you’re free to get changed and go home. You’ll feel pretty normal, but you get to tell people that you’re radioactive (which is partly true – you can’t spend extended periods of time with babies or pregnant women for 4 hours after the scan) and use Radioactive Man quotes to your hearts content (“MY EYES! THE GOOGLES DO NOTHING!”).

And that’s all there is to it.

Introduction

My name is Shay Semmens. Five years ago – Valentine’s Day, 2008 – I was officially diagnosed with Hodgkin’s Lymphoma.

What followed this diagnosis was a rather aggressive form of chemotherapy and radiotherapy, designed to hit me hard and wipe out the cancer altogether. I was told by my Oncologist that I had somewhere in the vicinity of a 95% chance of survival. I was confident and unafraid. I never even considered that the cancer winning was an option. I knew I would pull through, and in the end, I did.

Now, five years later, it has returned, worse than before.

Last time I had an idea to try and write a book on my ordeal, to give others (perhaps those who lacked my confidence in the face of their own cancer diagnosis) some insider knowledge of what to expect and a reminder that they weren’t alone. Maybe even some hope. However, I’m not proud to say, this was something I never got around to. When the cancer was gone I put it behind me as quickly as possible and got back to living my life – living it better than I ever did before.

Now that my lymphoma has returned, I’ve decided to pursue the idea in a less ambitious blog form. I hope to give details on the kind of things I go through, not just as an easy way for my family and friends to stay updated, but also hopefully for strangers seeking knowledge to learn something too.

If anyone has any questions or wants to chat – whether about their own health issues or those of a loved one, that’s what I’m here for. I certainly don’t have all the answers and can’t provide you with a cure, but I’ll do the best I can to help.

Thank you.

Shay.