MTCJ — 22 May 2022

Back in hospital. Today is Sunday, and the plan was to come in tomorrow morning, for my next round of chemo. However, there was a little twist. Let me go back a few days…

Since leaving hospital at the end of my first week of chemo, I’ve been going into hospital every Mon, Wed & Fri to get blood taken and have it checked for any unexpected changes. Wednesday (18 May) afternoon, sitting in the car while my wife quickly jumped into the supermarket to get a few things that were missing. (I’m not going into any shops or other places where there is a risk of meeting people, as my immune system is weakened, due to the chemo.) So while I’m waiting, the phone rings, and I recognise the number of my hospital. It’s the doctor from my ward, informing me that my white blood cells are still dropping, when they should be going up again (typically, day 10 is the low point — this is day 17 of the first cycle for me). Same for one other blood metric, in relation to the immune system. They’re asking me to come in on Thursday morning again, to check one more time. So, the next morning, I turn up again, they take blood, have it checked by the lab, and again my numbers have dropped. Thus, I get a set of 3 do-it-yourself injections to boost the production of blood, so that my immune system recovers. Quite scary — it’s a whole set with a syringe filled with a transparent liquid, 2 needles (one of them is gigantic) and a little flask with a white powder. I have to use the big needle to inject the fluid into the flask, mix it, and pull it back into the syringe. Then get rid of any air bubbles, replace the big needle with the small one, and inject myself into the belly fat. Fortunately I have grown some recently — until about a year ago, there wasn’t any fat to speak of on my belly. It’s scary, but the doctor is super nice, explains it, helps me do the first one, and then sends me home. I am due back the following morning, and I should expect to be asked to come in once more over the weekend — details to be confirmed the following day. So on Friday, I once more turn up at the hospital, and fortunately, the blood metrics in relation to the immune system have started to recover, based on only that one injection I gave myself the day prior. So I go home, do my second injection, and focus on enjoying the few remaining days with my family. All is good.

Until that evening, that is. I start feeling a bit unwell, and my lower back starts aching. It’s a kind of ache I haven’t felt before. I try to move, stretch, find a comfortable position, to no avail. The pain is getting worse by the minute. It’s a pulsating pain, each second, a shot of pain goes through my lower back, and it increases and decreases in waves, about each 10 seconds. It gets so bad I start twitching in spasms when the pain is at its peak. I’m no wimp, and I’m usually quite good at dealing with physical pain (you have to, as endurance athlete — one of my favourite sayings is “pain is inevitable, suffering is optional”), but this is a kind of pain much stronger than I’ve ever experienced before! Getting up and walking around helps for a few seconds, but then it goes back to normal. So I call the hospital, and they ask me to come in so they can check me over. I quickly chuck a few things into a bag (in case they want to keep me there), pyjamas, a change of clothes, a phone charger, some toiletries. Sitting in the car is almost impossible (thank god it’s only a 10 minute drive). I twist and turn in the seat, supporting myself in whichever way I can. I try and joke about it (comparing it to contractions of child birth, even though I know that must be much worse — my wife gave birth to 2 kids without any pain relief, she will always be my hero for this incredible feat), make conversation, distract myself, until we arrive.

I must be looking dreadful, for as I walk to the emergency department, having to stop when the pain gets too strong, a lady — also a patient — stops and asks me if I’m OK, and if I want her to call someone to come and pick me up. I thank her but decline — I will make it on my own 2 feet. Plus, sitting is even worse than standing up or walking. First, I see the nurse, who does all sorts of tests (PCR, MRSA, blood pressure, blood oxygenation, urin…). She also takes about 7 tubes of blood. All the time, I am struggling to stay still when the pain gets really strong — trying to manage the pain through breathing, distracting myself, trying to find a position that is less uncomfortable…

Eventually I see the doctor — the same one who gave me the injections on Thursday, and she tells me that what I’m feeling is a very common side effect of the meds I’ve been given to boost my immune system. She proposes to give me 1000mg of paracetamol. I’m very sceptical that paracetamol will do anything, but lo and behold, as this stuff runs into my vein, gradually the pain eases and I can sit normally again. What a relief!

I’m sent home with a pack of paracetamol pills and the instruction to take one in the morning, midday, afternoon and night, but no more than 8 in 24 hours. I’m still in some pain as I walk back to the car, but feel so much better! We go home, I shower and go to bed, falling asleep quite quickly. I wake up in the morning, in pain again, thus take my first paracetamol at 7am and try to go back to sleep. I fade in and out of a light snooze, but keep waking up. The pain increases. At 11, I take another pill. It helps, but not as much anymore. Like that, I struggle through the day, rarely getting up, taking another pill each 3 hours, but eventually, I decide this isn’t bearable anymore. The doctor had asked me to come back if anything changed, so we go to hospital once more. By that time, the pain is as bad as it was the night before, despite the paracetamol. So we go once more, my wife driving me as always, supporting me in any way possible. No bag this time, since all I’m doing is picking up some stronger painkiller. Or so I thought. I speak to the doctor, he is very supportive, checks my records (it’s not the same one from the night before), consults the senior doctor on duty, and offers me the choice — either go home and continue with paracetamol, or (and this is his preferred option, as well as that of the senior doctor) stay over and get the painkiller. Unfortunately he can’t send me home with that, as it is very strong and they need to monitor me.

Since the pain wasn’t bearable, I decide to go with the doctor’s preference and stay. I call my wife (she isn’t allowed to accompany me into hospital) and let her know. She goes home and packs my bag, as I will stay not just for one night (it’s Saturday), but because I was due to get my second round of chemo from Monday, they are keeping mere there until Friday. In the meantime, they sort out a single room for me (my immune system is too weak and being in a room with other patients would be too risky for me), I get to lay down (as best I can) and a drip is attached to me. As the fluid runs into my veins, I start getting tired and a bit dizzy. I’m told that’s normal, I may also see flashes in front of my eyes. After all, this is an opiate, quite a powerful drug! Alas, no flashes for me, but definitely dizziness. The pain is still there, but I’m told the meds will take effect soon. And, sure enough, as I put my pyjamas on and get comfortable, the pain gradually subsides, while my wife organises everything for me. I’m a lucky man!

I wake up early the next morning, as my window is to the east and the rising sun greets me at 5am, the curtains doing very little to keep the rays out. But the great thing is: I slept through and I feel no pain! What a relief! So, to you, the reader: if, as you’re reading this, you feel no pain: Be grateful! Be conscious of not feeling any pain! Enjoy it! I, for one, take it as a given not to have any pain on a daily basis. I keep myself fit, I eat healthy, and I forget that, although I’m doing all I can, being healthy and pain free can never be taken for granted!

So now, I’m sitting here at the little table in my hospital room, writing this blog. I look out of the window and can see a huge expanse of allotments, mostly green, which is soothing for the soul. The TV tower isn’t far, and in the distance, I can see the city skyline. I am grateful not to feel any pain. I am ready for my second cycle of chemo starting tomorrow (well, as ready as I can be). Of course I was looking forward to spending the last few days at home with my family, before being admitted again. It wasn’t to be, which is a shame. But still, I consider myself lucky. Things could be so much worse. One of my next posts will be about gratitude, as I have a lot to be grateful for, and probably, you do, too.