Set Back – Get back

Sorry for leaving you on a cliffhanger dear reader. Where were we? ah, yes. neutrophil levels. So first some “science” then how it impacted me.

So neutrophils get counted by some medical “stuff” and after this “wizardry” is done you get given a number to one decimal place. Hope you’re coping with the level of technical detail i’m providing here? The normal range that you probably sit in is 2.5-6 (well lots of different ranges are given by different credible sources but this is indicative). If you’re below 1.5 that’s an issue. You’re immune system won’t work properly leaving you vulnerable to infection. If you’re below 0.5 then that’s really an issue and your immune system really isn’t working and you’re really vulnerable to infection. To have your chemo infusion you need to be above 1. Got it?

I started treatment at 3.5. So, normal but the low end of normal. No particular reason given for this and I’ve always been pretty good at staying healthy and staving off infection. When i had my pre-treatment call before cycle 2 i was at 0.5 but with the normal progress of a chemo cycle this would be on the up and so off i went on that Friday to get bloods done immediately before getting hooked up. Aaaaand i was then at 0.3. Bum. So i was sent home for a week’s delay. No advice given on what to do other than rest but stay active and listen to my body. A fellow cancer train passenger recommended cold water showers but the only meaningful side effect i have is sensitivity to the cold. hhhmm.

Even a couple of weeks down the line from then it’s hard to remember and understand how hard this setback hit me. I don’t think i’d now even call it a setback with the benefit of perspective but it certainly felt like it. I think the triggering issues (beyond the delay to treatment) was the lack of control. I’d done all that was asked of me. I’d stayed home. Rested. Eaten well. Taken steps to avoid infection. Stayed hydrated. And yet no, my body wouldn’t play ball. I’d asked a selection of medical professionals what else i could do to get that number up and they had all said there wan’t anything. I like to control things. I like to know that there is some correlation between my actions and the outcomes that impact me. But we all know this is frequently not true and even when it is the correlation is rarely strong. I tried this cycle to do something to take back this sense of control but we can come back to that another time. But really the trick is coming to accept that there will be many things in this process that i cannot control or influence.

The other reason that the treatment delay felt like such a setback was that the day at the chemo suite had been pretty horrible. I’d arrived late and in a fluster due to traffic and was there for 4 hours before i was told i wouldn’t be able to receive treatment. For the first 45 mins of that time i was sat in the waiting room next to a man who spent that time explaining that he’d been “given two months to live” at his last consultation but that that “can’t be right because somebody has to be around to look after my daughter” and that he planned to “just not accept it, if you accept it then it’ll happen but if you don’t it won’t”. All my energy was taken up with focusing on my own situation and emotions and i couldn’t engage meaningfully with him. Others were trying but it was hard. All of us in that room were listeners for his monologue. It was tough for anyone but, selfishly, tougher for an audience who knew they one day could be in his place. He left the waiting room for the chemo suite just before i did. When i went through my nurse gave me the choice of where to sit – two chairs. One next to him. Another next to a woman on the opposite side of the room. I walked to the seat next to the woman and before i’d even sat down i’d been hit by guilt and a little shame that i’d chosen to avoid him. Yes we’re all in this together but sometimes you need to know the limits of what you can give to others and what you need to retain for yourself. At least that’s what i told myself. It didn’t really help.

I sat in that seat for just under two hours while bloods were taken, treatment denied, dressing changed and treatments re-booked. For almost all of that time the woman next to me was vomiting. Between throwing up she spent the rest of the time asking the nurses if they could either do something to make it stop or to give her pain relief to take home with her due to the pain she was in during her cycles. It was grim. The nurses explained that because her bodyweight was so low there was little more they could do to help her with the vomiting but that it “only light” and that she had no other side effects so it was best to proceed. Occasionally she would slump back in her seat, i would look over and we’d briefly hold eye contact. Pushed to action by the guilt of having avoided the man I wondered what i could usefully say or do. But no words came to me.

The final reason was that the delay, though apparently clinically not an issue, was an issue personally. We’d arranged for family to come and stay for the next couple of infusion weekends to help out. That now needed to be rearranged. We’d just booked a weekend away with friends on a ‘good’ weekend. Well with a one week delay that was now a ‘bad’ weekend. This meant cancelling the only tangible thing i had to look forward to. Tough one.

And so i was sat there next to the vomiting & crying lady and opposite waiting room man who was now delivering his speech to a new audience. I was hoping that the nurse would come back and let me have the drugs. The ones that made her beg for help but gave him hope. But no. Go home. Do nothing. Come back later.

A week later i returned. 0.9. The nurse would check with my doctor if it could go ahead. yes it could with a small reduction to two of my drugs so as to allow my number to come back up and get us on track for cycle 3. Great. But there’s a problem – the pharmacy might not have drugs at that volume and concentration in stock. We’ll have to wait and see if they do – it’ll take 30 mins. Are you kidding me? OK, they have it we can get started. Thank you. Huge smile. Never so happy to commit to a week-long handover.

And now we’re a week and a half later. I’m at 1.2. Signed off today for a full whack cycle 3 this Friday. Not even needing a pre-treatment blood test. Woop Woop. What a strange thing to feel elated about.

ps. off of the back of the last blog i received multiple inquiries about the content of my chemo sandwich. I’d like to record that it was a homemade roast chicken, ham and cheese sandwich with salad leaves and a pesto & hummus dressing on seed crusted bread. I call it the ‘middle class aspiration sandwich’. However, for the actual infusion 2 i took left over veggie lasagna. Thank you to everyone for their sandwich suggestions. I will not be listening them.

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