Chapter 36: Immunotherapy Treatment

“When angry, count to four; when very angry, swear.”
Mark Twain

I awake to what should hopefully be my last day in hospital – on this visit at least. I’m scrutinised once again by the doctor on his early morning rounds, and after a brief interrogation he advises that the tube still dangling out of my lung and chaining me to the wall is removed and I’m sent home today. I thank him for his most sage and agreeable decision. Two nurses arrive later in the morning to extract the offending tube; it sounds to be a bit more of a complex procedure than I had expected. I need to be breathing out while they pull the pipe out. We have a practice run, and they’re confident I’ve got the hang of it. One of the nurses grasps the tube and counts down, I breathe out on zero and she pulls the tube giving me a few seconds of excruciating agony as the pipe seems to have been much further in than I had realised. Meanwhile the other nurse inserts a few quick stitches to hold the wound together. Nothing seems to be leaking out, and my lungs seem to be working properly so I think we’re all good.

Before I’m allowed to leave however they want to perform one final set of observations. All is going well until they take my temperature, which is a little high. I’ve also been starting to get a few sweats too, but I don’t want it to interfere with my escape plan. I’ve spent much of the last few days in hospital perusing bass guitars on my iPhone trying to decide which one to buy. After much research I have ordered myself a Fender Jaguar Bass in sunburst and it’s being delivered tomorrow, so I need to get home today if I’m ever going to get the band back together again. The nurse advises retaking my temperature in an hour so, which we do, and thankfully it is now low enough not to raise any alarms and facilitate my exit. I’m feeling pretty rough still though, I have a lot of chest pain from the operation, but that’s to be expected and I’m hoping that in a week’s time the discomfort of the operation will fade and I’ll be fine. I’m also quite excited about starting my new treatment and hopeful that the immunotherapy is going to perturb my cancer somewhat without all those loathsome little side effects I had on the chemotherapy.

A week after my operation however and I don’t seem to have quite got my mojo back yet. I’ve been spending my mornings in bed (seemed little point in getting up) and the afternoons lying on the sofa. I also seem to have problems controlling my body temperature. I keep shivering awfully intensely so Tori puts a blanket on me and then half an hour later I’m dripping with sweat and having to rip my shirt of as if I’m Ross Poldark getting ready to give my field a damn good scything. Things aren’t any better at night either, in fact I’ve started waking up in the middle of night having soaked the sheets and pillows with sweat. I’ve taken to wearing T shirts in bed, so I can change them every few hours when they’ve quite literally become drenched in perspiration.

No, no, not the comfy chair
I’m also back at the hospital this week for my first immunotherapy treatment. Unlike my oral pazopanib tablets, the nivolumab is delivered intravenously, so I need to go into the treatment room and get hooked up to a drip. I sit in the comfy chemotherapy chair, a cannula is inserted into my arm and after a quick saline drain my nivolumab is attached and slowly ebbs its way into me. I know the odds of the nivolumab working aren’t great, but I’m pretty sure this stuff is going to turn my immune system up to eleven, shrink my cancer and pick me up again. It’s a long old process waiting for the expectant elixer to fully drain in, but luckily I’ve got the seat next to the radio, after checking no one was listening to it I’m able to successfully retune it to Radio 4 and listen to the afternoon play. After about an hour and half I can feel myself starting to shiver. It’s the same thing I’ve been getting at home every day so I don’t worry too much about it. The shivers however worsen and I start to shake quite violently and become suddenly short of breath. The nurse notices that I’m in distress and comes over and stops the drip as she believes I am having an adverse reaction to the nivolumab. She also annoyingly turns of that “rubbish on the radio”, that I was happily listening to. I’m pretty sure its just one of my normal shiver/sweat episodes, and after a while I stop shivering and start sweating profusely before finally settling back down again. I’m given some pills to counter the reaction and a doctor is called for. I explain that alas these shivers and sweats are par for the course for me these days and after a few more tests and observations I’m finally allowed to complete my immunotherapy session. I was however hoping to have my future treatments at home, but today’s issues have scuppered my chances of that as they will want to keep a close eye on me during future treatment session now.

After another two weeks of lying around in bed (or the sofa), things are no better. In fact they’re worse, I’m soaking up to four T-Shirts a night now. Tori drives me back to the hospital again to load me up with nivolumab once more. I’m still hoping that once I’ve had a bit more of the stuff I’ll start to see an improvement. I was hoping to have my treatment in the morning today because I always seem to get the shivers and sweats later on in the day, but alas my treatment is once again scheduled for the afternoon. I feel some shivers coming on again towards the end of the treatment, but they’re not too severe today, so I’m able to not make too much of a fuss about this time. I have however had the results of some recent blood tests which show my blood count has dropped drastically so they want me to come in again for a blood transfusion. It was planned for next week, but the nurse doesn’t much like the look of me and fiddles about with her appointment diary so I can come back in tomorrow for an earlier urgent blood transfusion.

I arrive back at the hospital early the next morning and am given a private treatment room for my blood transfusions. They want to give me two bags of blood and each one takes at least two hours to trickle in so its going to be another long day in hospital. It takes a while to flush some saline through my system and finally start to get the first bag of fresh blood in me. By the afternoon I’ve drained the first bag of blood and a second bag is attached. I get near to the end of second bag by mid afternoon but I can feel the onset of another one of my episodes building up. A set of observations is performed towards the end of the second bag of blood and my temperature has risen again (as I suspected it might) in preparation for another bout of intense shivering and sweating. The nurse is however not happy with my high temperature and stops the blood transfusion and calls for the doctor. Once again I have to explain about my shivers and sweats, while they run a few more tests and keep me in longer to observe me. I’m keen to have the last few drops of blood and I finally convince the doctor that I’m OK to continue so the drip is turned back on in the evening to complete the blood transfusion. I feel a little better with some new blood in me and I’m sent home, but there’s no real improvement in my condition.

Further blood tests the following week show that although my blood count has picked up a little after my blood transfusion, its still worrying low and more blood is required. I therefore have a week of deja-vu as I go back into hospital for two more consecutive visits for my immunotherapy treatment and another two bags of blood. I manage to get through both without any further complications but I nonetheless return back home each time energy-less to lie on my sofa next to my new but barely plucked bass guitar and patiently wait for this bastard immunotherapy treatment to start fucking working.