Seeing as it was so fun the first time around, let’s try chemo again

I am afraid this entry will be a little boring. Good for me, less so for you. I know my fans want drama; this could be a reality TV show in the making. On more than one occasion by more than one individual, it has been mentioned that I have a tendency to be slightly dramatic. I’ll see what I can drum up for you. 

Friday evening, mid nose bleed, post one glass of wine, I received a call from the Brighton haematology day unit just to let me know that my neutrophils were 0.8 (they need to be >1.0) so I would need bloods again before my scheduled chemotherapy. Essentially, they were telling me to expect a wait when I came in on Monday and not to be surprised if, on Monday, they decided to move my chemo to Wednesday. Clinically, if I were at work, I wouldn’t batter an eyelid at a post-chemo patient with a neutrophil count of 0.8. Maybe 0.5, but 0.8 meh. To be honest I was more concerned about my platelet count (a very normal 330ish for those interested) because this nose bleed had been going on for a wee while now. The objective of this paragraph was to let you know that, going into the chemo appointment, I was prepared for a wait. A good writer wouldn’t need to summarise each paragraph with its planned objective. 

Monday morning, post a magic pill induced sleep, equipped with food, music, books, writing material and nerves, we rode the bus (upstairs seats not downstairs) to the hospital, arriving a good thirty minutes early, giving time for those nerves to reach an unsuitably high level. I was annoyed at the complacency I had displayed when preparing my hair for the day ahead. Already it resembled a cross between a 1986 Bart Simpson and a 1981 Princess Diana. 

We were intending to leave and grab a coffee whilst we were waiting for the blood results, not the mud water Costa coffee that seems to plague every hospital in Britain, but a real coffee from a reputable coffeehouse. However, once I had established myself in my oversized salmon coloured chair, I was reluctant to move and too embarrassed to ask if I was allowed, so I picked up my book and settled in for the long haul. And it was a long haul. It took half an hour and three attempts to get the cannula in. I’d not hydrated myself enough prior to my arrival and, despite my current colossal appetite, I think I am still losing weight, so venous access was difficult. I am rocking a few bruises now – war wounds, makes it all look worse than it is! The lab had my blood results back within the hour; biomedical scientists are incredibly hard working and, globally, I think they require a pay rise. I’m sure you all agree. Anyway, I had a neutrophil count of 0.6. They had actually dropped, not gone up. Maybe I should be a bit more cautious about eating unpasteurised cheese…. 

The haem team decided to crack on with treatment anyhow, so now it is up to pharmacy to deliver the drugs. This must be quite a complicated process as it took over three hours. Ah, that is unfair of me, and may be due to a small degree of inter-departmental hospital rivalry. I imagine the prescription had to be escalated through various chains of command due to the neutropenia. They have rules for a reason, and here we were breaking them. Good. I hate rules. I have been occupying my large salmon chair for four hours or so before the chemo even arrives. Hurry up and wait. Luckily we remembered food.  There was one hangger experience, but Mike managed to subdue it with some nuts and an éclair.  

Nuts and terrible hair

The chemotherapy itself was significantly easier than the first experience. I was given some IV antihistamine straight up, so I didn’t have the reaction this time. All I got was a mild, nearly enjoyable, tingling on my lips, like eating too many pixie sticks whilst on nitrous oxide. They reduced the infusion rate of the dacarbazine, so initially the vein pain was only mild. It was reduced again when I said ‘yeah I am good, the pain is only mild this time’. They do not accept pain.

Prior to leaving the hospital I had a demonstration on how to inject myself with GCSF. This is granulocyte colony stimulating factor, and basically opens the bone marrow flood gates, with the intention of replenishing the neutrophils in my peripheral blood, making me less susceptible to infections. GCSF is one of my favourite haematology drugs. I am going to have a lovely leucoerythroblastic blood film that I am just dying to look at! Currently the injection is acclimatising to room temperature on the bench and I am rather nervous about the prospect of injecting it myself, but toughen up right?! Eight year old diabetic kids deal with like four injections a day. I also have my very own sharps bin, just in case I was missing work. 

Let's have some warnings shall we?

After chemo? Well we got home around 7pm, having left the house 8 hours prior. A massive feast of pizza and garlic bread followed; this went down far better than the Thai. Our Monday night ritual of attempting to answer four questions each on University Challenge was upheld, however the four questions part was a complete failure. Particularly disappointing as I missed quotes from both 1984 and Slaughterhouse Five; two of my more favoured books. Even post chemo this is unacceptable! I know a certain person will be shaking their head in disapproval right now. I am sorry. I was in bed by nine o’clock with a hunger/nausea/throbbing lymph node combo. A magic sleeping pill had me knocked out by nine-thirty.

Right now, Tuesday afternoon, I have just jabbed myself in the gut. The anxiety that I’d developed prior to doing so was enough to substantially increase my already present nausea. Fatigue is definitely high on the symptom list, despite the ten hours of sleep I had last night. I am eyeing up the ludicrously large bottle of Coca-Cola on our bench, but I think it will be more cytotoxic than the chemo. The skin on my hands has the texture of 220 sandpaper, maybe a grade or two lower than that. The four litres of water I am attempting to consume have led to frequent trips to the bathroom. My knowledge of abdominal anatomy is really improving, as the lymph node below my liver, the one near my pelvis, and my spleen are all letting me know their presence. I am dying for a beer. Do you think anyone would notice? Mike doesn’t read this and you guys won’t dob me in will you? Wink, wink, come on I have cancer. I promise not to bleed on you. (My god was that two Monty Python references in one paragraph? I need to stop typing!)

Oh I promised drama! Ok what can I do here?  Well my nurse for the day was Irish, from the North West, just south of the border. She made reference to those north of the border being a little dodgy. She works with a Northern Ireland guy who was deliberately within ear shot, and some light-hearted jibbing ensued.  Nothing like some sectarian workplace banter to make the day more exciting. For the record all of this was in good faith, and the nurse was lovely. I wanted to make it dramatic, but with such a delicate topic, well let’s just say I don’t want the level of exposure or controversy like that of the annual Tata Bay cardboard boat race.

Overall, I am somewhat detached from everything that is going on. Obviously not the physical symptoms. The fatigue, the nausea, the pain; I can’t avoid those, but the actual ‘I am a lymphoma patient’ that part I am not sure I have come to terms with. It seems it is happening to someone else not me. I mentioned in an earlier entry that I had the cellular effects down but not the physical ones. Well, now it has reversed; I am becoming accustomed to the physical symptoms, but the cellular level I am consciously oblivious to. The neutrophil count of 0.6, that isn’t me. I am not on GCSF, this is what happens to patients at work. It can’t be me. Maybe every patient has this same level of disconnection. Maybe it is my failure to link my workplace knowledge to my personal life. Maybe this is a good thing – leave work at work and home at home, but ultimately I think there is a small degree of denial going on. You know it’s not just a river in Egypt. I guess a small degree of denial is an OK thing, it certainly keeps the external positivity going. Just so long as any potential bad news doesn’t take us too much by surprise. Not that I am envisioning any bad news, but you know, well you never know.