A small story about a massive pulmonary embolism

2 September 2013.

I have not been outside in over a week.

Limited variety has been provided when I have shuffled from place to place and room to room, as various people prodded me, jagged me, scanned me and judged me, but moving around a building does not stop claustrophobia setting in. My last sortie to the outside world happened ten days ago, when a Czech chap escorted me to the local fertility centre, first wheeling me from the ward in a wheelchair then whisking me across the campus in a car. That experience would normally have been an instant contender for the top ten of bizarre experiences in my life, but my expectations had a damn good shake when they worked out what was wrong with me. So my hospital based sabbatical continues.

I make no secret of the fact that I am feeling a bit stir crazy. Other than that, I am not feeling too bad, actually. I was told my treatment might make me feel nauseous and I could expect to lose my hair. This has not happened. Yet. In fact, it is all just a bit too normal, although I am being spoilt rotten by friends old and new. Childhood pals are catching up with me and making a special effort to visit: Neil is driving across from Elgin today for the afternoon visiting slot. And people actually bring me three meals a day to save me from the chores of cooking and washing up, I have enough reading material to last me a lifetime and I have access to free WiFi (a perk of being a University of Aberdeen employee re-homed in a teaching hospital). Not too bad, eh?

For all that, I am not at liberty. Okay, my enforced and quietly consented to confinement is for my own good. A bit of tough medicine gets pumped into me via my newest appendage, namely a PICC line which protrudes from a vein in the crook of my left arm. Today I am hooked up to my third consecutive 24 hour bag of bleomycin, a drug that I desperately need to stay alive, as I have recently learnt. Paradoxically, bleomycin reacts in a funny manner with oxygen, causing changes in the lungs. Prior to treatment, my medical knowledge was such that I was aware of the need for oxygen to stay alive. My updated medical knowledge, improved by a crash course in chemotherapy, is acutely aware this is a trade off I need to quietly accept.

I have almost acclimatised to the need to steer this IV stand around with me, with its bright red balloon of chemotherapy proclaiming its cytotoxic status, warning against human interaction with its contents unless taken intravenously. I wheel my new companion to the shower and imagine how ridiculous I look as I attempt to wash. It accompanies me to bed at night, sort-of-silently yawing away as it slowly infuses bleomycin or other goodies. Mobility is a tad hampered. At one stage of my stay in the ward, there was mention of “bed rest”, but my legs are tight and need a stretch. I ask if I can go for a walk. I have spotted other in-patients lapping the ward, enjoying what limited exercise they can, and I am jealous. The oncologist who is looking after me has been keeping a close eye on things, but he eventually assents. Finally, I am going to stretch my legs again. I am grateful for such small mercies. There is only so much time you can idle away on your smartphone or laptop. In fact, my vision was a little blurred earlier today, as if someone had fired fifteen consecutive camera flashes at me. Maybe I have been looking at a screen for too long. Yes, I could do with doing something else.

I abandon my laptop at the side of the bed. Gingerly, I venture from my room to the corridor. Room 13. Unlucky for some. (Someone in the hospital kitchen is obviously superstitious, as my menu card often comes back with Room 13 amended to Room 12A.) I must look a sight, as I plod slowly into the corridor in a dressing gown and big, floppy slippers, trundling my trusty IV stand beside me. I smile as I pass one of the young auxiliary nurses. She smiles back, perhaps wondering whether I am allowed to be out of my room, but doesn’t say anything. If she did, I could set her mind at ease. I am fine. Well, except for this massive bag of chemo. But apart from that, I am fine. My oncologist said I could go for a walk.

After navigating two of the four limbs of the ward corridor, I reach the common room. I have not been in here yet, so I peer in and look at the assortment of sudoku puzzles and books that I may enjoy in future. I take a moment’s rest. Yes, I am feeling fine, for a minute there I lost myself. I am sure it is nothing. I will finish my lap, which is suddenly the most important athletic event of my life. The Edinburgh Marathon has nothing on this.

I plod on. I pass the reception and begin the fourth and last limb of the oncology ward lap. I slow down. Wait, I am feeling a bit woozy. I can see those shiny flashes again. I ponder briefly that I have never fainted before.

I am on the ground. I don’t remember getting there, but I am lying horizontal in a hospital corridor. Someone is shaking me. The standard first aid questions are being fired my way. I am in pain. I am struggling for breath. Actually, I can’t breathe. Fuck, I can’t breathe. There seems to be an entire drum corps inside my ribcage, beating my chest in something that vaguely resembles a rhythm, but I am completely lacking the quiet rhythm of breathing. It is said you only notice the lack of air when you can’t breathe. I can confirm this is true.

“I can’t breathe.” I am not too sure who I am speaking to, but I think it is the senior charge nurse, who has adeptly put me in the recovery position.

“How much pain are you in? On a scale of one to ten.”

“Um, six.”

Six? Macho idiot. Why did I say six? I mean ten. I am in more pain than I have ever been in my life. It hurts. My chest is tighter than an over-tuned snare drum. I don’t know what to do. I can’t make it better. Can someone make it better?

So this is what it is like to be in an episode of a hospital drama like Casualty. People swarm around me. An Asian doctor who I have spotted around the ward is animatedly shouting instructions about what should be pumped into me. I have no idea what he is saying. A Scottish doctor I don’t recognise slips some kind of gizmo on my chest. I later discover it is a portable ECG machine, to check my heart.

“His left ventricle’s empty,” the new doctor announces.

Fuck.

That’s not good.

Aah, fuck. Fuck fuck fuck fuck fuck fuck fuck fuck fuck.

Fuck.

Why is one of the four chambers of my heart empty? I mean, I have a rogue testicle, not coronary issues. I was going to sail through this chemotherapy and get better. What exactly is going on?

Fuck.

Now what?

“We’re going to need to lift you up onto a trolley, Malcolm. Is that okay?”

At this point my English reverts to its best Johnstone High School vernacular.

“Fucking go fur it.”

Hilarity seems to ensue amongst the nurses at my erudite instruction. I stifle a chortle myself. If it wasn’t so sore it would be funny. Actually, it still is funny. And bizarre. Also bizarre is the fact that I seem to sprouting cannulas on my right arm, as people seek access to my bloodstream. The PICC line on my left arm has been decoupled from chemotherapy. I am hoisted by my own petard onto a trolley. Or maybe I was hoisted by a bunch of nurses, I don’t really recall.

Shit, Neil is supposed to be coming to visit me this afternoon. Will he still be allowed to visit me? Actually, maybe I should concentrate on not dying just now. Neil can wait. Sorry, chief.

“We might need to cut your dressing gown, Malcolm. Is that okay?”

I assent. I may have assented with a strategic swear word. I am wheeled back to Room 13. Unlucky for some.

“Watch out for his laptop!”

Hah, now I know why the nurses and cleaning staff were moaning at me to keep my room tidy, in case something like this happened and they had to wheel me about the ward. Something like this was never going to happen though, was it?

I swear and suggest to the nurses that the laptop is not a top priority for me.

I am positioned back in my room. People continue to swarm around me. A young medical student claws at my feet, seeking a vein for some reason she knows and I can only guess. The curtain is drawn to prevent prying eyes looking in. I mull over how much of a scene I have made in the ward and feel guilty.

“Malcolm, we are going to need to put a catheter on you, is that alright?”

“My good lady, if you can find my decidedly non-tumescent penis at the moment you will be doing very well. Assuming so, if you think a catheter is necessary I consent to the exercise of your good judgement.” Is what I should have said.

In actual fact, I think I suggested this would be fine in slightly more primeval terms. I may have uttered another swear word.

“Okay, that is you hooked up, sorry I had to do that.”

Sorry? Seriously, I don’t need an apology. As a recently diagnosed testicular cancer patient, dignity is not high on my list of priorities right now.

I flit in and out of consciousness in Room 13. I finally wake up properly, regain my senses and take a look around. The crowd of people around me seem a bit calmer. The Asian doctor from earlier is no longer shouting instructions, but for some reason he is applying pressure to the crotch of my left leg. I make a mental note to ask about this later. Bruising on my right arm is beginning to form. I have the biggest cannula I have ever seen next to my right elbow, strapped down with a heck of a lot of dressing, designed to keep it in place whilst I sweated profusely mid-collapse.

Other stuff happens around me. My mum walks into the room. It seems she was called by the hospital to come in. Fuck. This must have been serious. But at least she has been allowed to come in, that must be a good sign. My dad has dropped everything and is driving up from Renfrewshire to visit. Neil is told to drive back to Elgin and call another time. Visits from Dave, Marsaili and Victoria are postponed indefinitely. At some point, the doctor stops being interested in my inner thigh. (Apparently an arterial blood sample had been taken from my left femoral artery, and the pressure was applied to stop bruising, meaning there was actually a sensible reason for this unexpected attention to my left groin. Unfortunately because of all that was happening to my right arm they were unable to apply pressure where another arterial stab had taken place, hence my forearm turned a nice shade of purple.)

I later discover that I was found collapsed by a pharmacist before the combined expertise of Aberdeen Royal Infirmary was deployed to keep me alive. I was first treated for an anaphylactic shock reaction to my chemotherapy treatment, but this was not the issue. I was actually having a massive pulmonary embolism, thanks to a wee blood clot having a massive impact on my system. A dose of clot-busting medicine dissolved everything in my bloodstream that needed dissolved, and then some. Every wound on my battered body reopened. Blood seemed to pour out of me. I spent that night with a Tena bed sheet wrapped around my left arm as my PICC line dripped non-coagulated liquid. Weird. I also spent the night in the High Dependency Unit, which was, shall we say, interesting.

But I was told this was a good cancer to get? I was quoted survivability statistics in the 90s, when expressed as a percentage. You mean to say cancer isn’t a cakewalk?

Apparently not. My chemotherapy is suspended. I am hooked up to oxygen, even though this may cause complications when combined with the bleomycin chemotherapy. Less importantly, people who were previously texting me silly jokes to keep my spirits up wonder why I am suddenly feeling stand-offish. I don’t know what to tell them, but mainly I want to tell them to back the fuck off. This is going to be a long journey, isn’t it?

I speak to my oncologist. He had not been planning to see me tomorrow. Now he is. Yeah, this was quite serious really, wasn’t it?

That was exactly one year ago. My chemotherapy restarted after a two day respite. Thirteen and a half weeks of chemotherapy, eight hours of surgery, nine months of blood-thinners and one IVC filter later, I am just about back to normal, whatever normal is. So why have I written this blog now?

I don’t know, but I wanted to. Maybe I want people to understand that cancer treatment isn’t always something that you suck up and then get better. This was the day the shit got real, as I understand the cool kids say. Some people still speak to me and say supposedly helpful things like, “I knew you’d beat cancer!” without having any idea what went on and just how small a role I played in any “victory” that took place amidst incidents like this one. Maybe I want people to understand some of the complications that can happen. Maybe I want you to appreciate how amazing the staff at places like ARI can be when reacting to a crisis. Maybe I am a narcissist who is delighted to still be able to write. Maybe I have realised life is a beautiful, fragile thing that can be snuffed out so quickly and you had really better do the things you love when you can and tell the people you love that you love them when you can, and perhaps this blog will help you realise that too. Maybe I want you to know that those bright flashes I saw before my ill-fated walk and attributed to overuse of technology were actually a warning that there were blood clots in my system and I should have told the doctors about it. Maybe I want to remind folk that issues relating to the Scottish/UK constitution aren’t always as important as your own constitution, especially as I would not have had blood clot issues if my rogue cell division had been caught sooner. Or maybe I just had to get this off my chest. My gloriously normal, not-at-all-tight, chest, which seems to contain a heart and lungs that just about work.

Neil visited me the following week. I still owe him some petrol money for his round-trip from Elgin to Aberdeen.

Cisplatin

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About basedrones

Bachelor of Laws. Scots lawyer working at the University of Aberdeen. English law qualified. Took far too long to write this bio. Blogs on legal issues, with occasional veering into other purportedly intellectual stuff from time to time. Tweets about legal issues, education, law clinics, fitba, music, rogue cell division and not at all about politics at @MalcolmCombe.
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9 Responses to A small story about a massive pulmonary embolism

  1. ‘Some people still speak to me and say supposedly helpful things like, “I knew you’d beat cancer!” without having any idea what went on and just how small a role I played in any “victory”’

    Although I know hee-haw about what you went through, I’m glad you wrote this sentence as it tells us something. I’m glad you wrote all the other stuff too by the way. And keep on writing if and when you want to (sorry to patronise, but you ken what I mean).

    Cheers

    Rod

    • basedrones says:

      Thanks for the comment, Rod. Re the quoted sentence, I think that is the most important message to shout. I could have been wearing a yellow “Livestrong” wristband and have all the happy tunes I wanted echoing around my head, but in this episode that would not have mattered a jot. Sure, in the overall well-being mix, good vibes matter. State of mind matters. But there are times when there is a lot more to it than that. I might even write about that again some time… I hope all is well with you.

  2. julieann081 says:

    I recently found your blog and I am glad I did. What a wonderful writer you are! Saying I’m sorry for what you went through doesn’t really mean anything. So, from a fellow cancer survivor, I say that I hear you, and thank you for sharing part of your story.

    • basedrones says:

      Thank you very much for those kind words. And the thing is, every single cancer survivor has a different story, which is probably the thing that I would most like to get across. Sure, you might not have had a blood clot adventure like I did, but you will have your own experiences and perspectives that are as valid and valuable. So keep on keeping on!

  3. Mike says:

    Usually when I click on a link to a blog I read a wee bit then the TLDR kicks in – not this one I read it all.
    It’s well written Malcolm and gives a great insight in to what cancer treatment can entail – saw one guy on the ward I was on (when I was in with clots) with a drain in his back & having to carry about a “bucket” that fluid & blood from his lungs where draining in to – he’d inoperable lung cancer – things like that & what you describe above are the things most people never see or hear about, makes my bilateral pulmonary embolism seem very tame in comparison.
    A lot can happen in a year – glad it’s the good things that are happening for you now.
    Keep writing & letting people know how much we need the NHS & the staff within it.

    • basedrones says:

      Thanks, Mike. Appreciated. The TL:DR version is, “Cancer is not actually easy, guys. Scary things can happen. Thank crunchie for the NHS when those scary things happen. And enjoy the good times when they come back.”

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