Folfox, 5FU & Fatigue

I should preface this post by saying it’s lengthy, and a bit technical. It is also a bit blue towards the end. If you want something less onerous and with a little more bounce, then go back and read about the awesome wank I had, otherwise, press on. Having read through it before publishing, it also loses it’s pizzazz about halfway through. I’m blaming the time of day and fatigue…and hey, cancer ūüėČ

I’ve just finished (officially) my first week of chemotherapy. I say officially because the week is actually over and a fresh week starts tomorrow. In actuality,¬†although I stopped having my chemo on Wednesday, chemo finished me yesterday (and Friday).

A previous post gave an overview of the treatment program that my oncologist/radiation oncologists have prescribed. Having now completed my first chemo cycle, I thought I’d give you an insight into what that week was like.

My week started on Monday, and it was reassuring to know that cancer kept normal business hours. I attended the day treatment centre at at Calvary Mater Hospital and assumed my seat on the blue pleather throne that are synonymous with chemotherapy.

First they removed the dressing from my portacath, admiring the handiwork of the surgeon who installed my hardware, with phrases such as “look how clean the incision is”, and “I can’t believe this is four days old”. Apparently, the preferred course is for patients having portacaths to have them installed some weeks before starting treatment, if for no other reason, it substantially lessens the chance of infection. Infection is bad at any time, when you’re being routinely poisoned, it can be fatal.

Anyways, having generally been given the impression that I have some form of superhuman healing powers, the nurse begins unpacking multiple bags which are sealed more tightly than Duty Free booze at the airport. The trolley is scrubbed, twice, and everything is laid out in a specific order, as though we are about to sacrifice a virgin on the altar of Olympus. If on;y we were sacrificing Miguel there and then.

The nurses discuss what size needle to use to access my port. They disagree because while there is some localised swelling and bruising, they don’t think they’ve seen a port settle quite as nicely as mine. It’s quite flattering being complimented on something that you have no control over whatsoever. They decide on 3/4″. If that sounds big, it fucking is.

The needles used to access the port looks like a record player needle. with a block housing from which a needled drops vertically, and which is tapered at the end. I can assure you that when they access the port with the needle, there is some music, as the wind is sucked from my lungs past my vocal chords like a cross between a banshee and a banjo. And then, nothing.

No pain, no discomfort. Nothing. Other than an a slight pulling feeling from the dressing which is put over the needle to secure it in place, nothing.

They start the infusion process with two non-chemo agents. Don’t kid yourself though, these fuckers are just as important as the hard stuff. One is a hardcore, slow release anti-emetic (anti-nausea) and the other is a steroid agent, which boosts the efficacy of the former.

Palonosetron is a highly effective anti-emetic drug. It basically works in two ways. Firstly, anti-emetics work by keeping your digestive system moving quickly so that food doesn’t sit in your stomach for very long but principally, it blocks certain receptors in your brain from thinking that anything untoward is happening: “Move along, nothing to see” type thing.

Dexamethasone is a steroid which works in tandem with the Palonosetron in their ruse against the body. It blocks the release of substances which cause inflammation, again tricking the brain into thinking that there is absolutely nothing wrong, despite the fact that a garage of toxins are about to mainlined into one of the largest veins in the body.

Those take only a matter of minutes, and then the fun stuff begins…

FOLFOX stands for Folinic Acid, Oxaliplatin, and Flourouracil (5FU). It is the gold standard for advanced colorectal cancer. If you decide to do some research on FOLFOX having read this post, please don’t be alarmed when you read that it is almost exclusively used for metastatic cancer. There is no evidence to suggest mine has spread yet, and in fact the brutal regiment they have me on is to ensure that it doesn’t. The internet is a great place, but it’s also a mine for anxiety etc.

They start with the¬†Oxaliplatin, and probably for good reason. As far as the chemo drugs they have me on, this one is a bitch. It’s the one that has a ‘side effects’ list longer than the Amazon, and none of them are nice. Fortunately, because the regimen they have me on is somewhat’tweaked’ from the norm, I only have to take it during chemo weeks, and not when I’m having radiation, and so I may not suffer as badly as many who have gone before me.

The Oxaliplatin looks meek enough. It’s just a clear liquid, hung on an IV post. The only evidence I have that I’m actually taking it is the reassuring beep that Baxter (my IV pump) makes and the fact that the bag gets smaller, minute by minute. The Oxaliplatin takes a fair amount of time to get into you, principally I suspect because they want to slow it down to a rate that won’t make you consider death as a viable option. In any event, the constant checks from the nursing staff and reassuring words are such that you have a long time to think about the possible onslaught that may be around the corner.

The main side effects of Oxaliplatin are nausea, vomiting, neuropathy (tingling in the hands and feet), hand and foot syndrome and extreme sensitivity to temperature, particularly cold.

Hand and foot syndrome is something I am really not looking forward to, but hopefully, as I said above, the way in which I am having it may go some way to minimise the effects I’ll face. Basically, my hands and feet become super sensitive and swell like a dead hippo in the savannah. Needless to say, cracks abound and life is generally unpleasant. So far so good, but ewe’ll cross that bridge when we come to it.

The temperature sensitivity is something that I experienced, and while it is uncomfortable, it’s short-lived and in a lot of ways, pretty funny. I can say that because I’m having chemo in summer, and not the depths of a North American winter, where I imagine the experience would be far less jovial.

Basically, for the week I’m having chemo, I have to touch test everything before I put it in my mouth. Hands and feet are faced with arctic strength pins and needles but my throat does not react quite as well. Put simply, my throat seizes up quicker than a stripper denied payment, and I feel as though I can’t breathe. They assure me I can, but that it is a pretty confronting experience. Thankfully, I managed to avoid any throat seizures and can now happily report that beer is back on the menu.

5FU is the abbreviated name, no doubt thought up by a patient who had to undergo chemo and became proficient in ‘fuck’. My first lot of chemo is dispensed at the hospital, via the IV. They give it to you at the same time as the Folinic Acid, which the nurses call ‘the bus’. I queried them as to the reason they call it that, and they assured me that it was due to the fact that the 5FU is a passenger and the Folinic Acid simply takes it where it needs to go and not because that’s what it feels like when it hits you. Good enough for me.

5FU is, as far as I can tell from my reading, far better tolerated than other chemotherapy drugs, and particularly the Oxaliplatin. That’s not to say that it’s a walk in the park, but I haven’t felt like necking myself quite yet.

The hospital dispensed infusion of 5FU is a short affair and before I know it, we’re hooking my chemo pump up and I’m getting a quick lesson on how it works and what to do when the alarm goes off.

Optimus is the name I gave my chemo pump. A friend from high school suggested it after I posted a photo and it had a ‘prime’ button on the front console. Having thought about it more it’s entirely appropriate. He is a workhorse, infusing nearly 300mL of 5FU into me over 46hrs without as much as a complaint. He is confronting looking, although perhaps, no more than an 80’s mobile phone, but most importantly, he’s a good guy.

Don’t get me wrong, he’s a pain in the ass. He’s bulky, he gets in the way, he routinely gets tangled, and most importantly, he’s a constant reminder that I’m sick. And of all of it, that’s the worst.

Sadly, but also hilariously, having Optimus installed wasn’t as easy as it should have been, mainly due to the fact that I hadn’t thought ahead and shaved my chest. 20 minutes and three rounds of clipping later, I’m hooked up, strapped in and on the way home.

The next 46odd hours were really nothing of any note, other than inconvenience. Maybe it was because it was the first run but I found it really restrictive in terms of what I could and couldn’t do, and that included being pretty much useless with any housework/chores. Hopefully that’s because it was all a bit raw still and the second time around I can get into a better routine as I know what to expect. Only time will tell. Anyways, before I knew it, Optimus’ alarm telling me it was almost time to disconnect went off and I was on the way to the hospital.

I can’t even think about having Optimus removed without tearing up, and hell, I cried in my colleagues office when his alarm went off telling me the end was nigh. Even now there are big fat tears streaming down my cheeks. ¬†After I was disconnected, I ran upstairs and saw Lyndell and Annabelle waiting for me near the cafeteria and Annabelle smiled and put her arms out for a cuddle. Being able to pick her up and hug/carry her, and hug Lyndell without fear of pumping the needle/port was the greatest thing I think I’ll ever experience. Even better, was it meant that I had beaten the first week of treatment. Well so I thought.

Fatigue isn’t a real thing, right? That’s what I thought. That was until Friday morning when I fell asleep at work, in the middle of typing a report. ¬†I don’t know how long I was asleep for but I know it wasn’t long, maybe a couple of minutes at the most. E-V-E-R-Y-T-H-I-N-G took so much longer to do. It was a struggle to type, I couldn’t concentrate and it took me a coffee and a can of Coke before my brain was operating at something that resembled normal (I know, great cancer diet eh). It didn’t help that Newcastle was 38* on Friday, and that I went out at lunch to get a haircut (it looks good thanks for asking) but by the time I got home, having had 1.5beers over 2.5hrs (my friends will tell you that means I was really sick) I was a wreck. It hurt to get off the lounge. Physically hurt. By the time I got to the bathroom I had to sit on the toilet to regather my strength to have a shower. When I made it back to the couch, I didn’t leave it.

The following day was somewhat better but not really. To say it was an unproductive day is being super polite, I was a lazy cunt!

Today is better, at least thus far. I’ve had my maxalon (more preventative than anything – you know, keep me on a steady course), and hopefully tomorrow is better again.

Even if it’s not, I haven’t really got that much to complain about. I’ve got an awesome wife/doctor who looks after me no end, I have incredible friends who have made meals, sent messages out of the blue to check in and who put up with me being¬†a whiny bitch.

Stay tuned for the next instalment which could either be “I’ve slept for a whole week and it was awesome” or “So I’ve just been nuked in the ass and now my colon feels like a microwave dinner”.



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