Pee Cee Vee…

#30

Everyone has experienced that feeling of being nervous but forgetting exactly what for. That Sunday night feeling. That’s how I would describe the run up to starting PCV treatment. I wasn’t knowingly worried but there was a definite fear of the unknown.

I bought plenty of protein and energy rich foods although the key advice was hydration and drinking plenty of water.

A quick reminder: PCV is given in 42x day cycles. On day #1, I went to Guys Cancer Centre to take 2x drugs (Lomustine and Vincristine) before taking drug #3 (Procarbazine) back at home. Days 2 – 10 are Procarbazine solely, the dose based on your BMI and blood test results. Days 11 – 42 are rest, recuperation and cell growth (both good and bad ones) before we start again.

Jo came with me for cycle #1. I checked in and we took our seats in reception. Looking around I noticed a big difference in the visual health of patients compared to any other area I had been in before. Patients looked tired and quite poorly. +1s had their head in a newspaper or a book, hardened to the solemn feel of floor C. 

Guys Cancer Centre has 3x chemotherapy suites (A, B and C) each with 12x plush recliner chairs for patients. I was assigned to suite A today. Apparently, there is no significance whether you’re sent to A, B or C…but paranoia causes you to question otherwise. 

A nurse invited us in. She explained that the first cycle is taken (if possible) in a private room. The same nurse would accompany me throughout this first cycle in case of any issues or allergic reactions. Walking through the suite, there was a cacophony of beeps and bleeps. There was a nurse’s station, busy with people in different coloured scrubs. I felt quite nervous.

The nurse felt my arm for a suitable vein for the canula. I offered the standard blood test position (fold on my arm) but she needed a bigger and deeper vein and opted for an area above my wrist. This is the hairiest part of my arm so I wasn’t looking forward to peeling (ripping) off the tape to secure it later!

I was given some anti-sickness pills and steroids before a saline flush. The nurse hung the Vincristine on the drip stand. It was a small bag of clear solution. On the way in, I saw people with big silver bags and there was mine, no bigger than a Capri Sun which explained why my dose would only take 15x minutes to drain.

Other people stay in the ward for hours, taking multiple drugs. It’s a big, bright area and although you have your space, there isn’t that much privacy. I wanted to take a couple of pictures to help explain but it didn’t feel right. Here’s one of me though…

The nurse opened the drip and I felt the Vincristine flow into my hand and up my arm. It was nothing more than a cold sensation but there was a knowing glance between myself and Jo. Bombs away! 

A junior nurse joined us who’s interest was oncology. It takes a certain person to work on a cancer ward. We chatted and before I knew it, the Capri Sun was empty. It wasn’t as gut wrenching as I feared but I was probably high on adrenalin.   

Lomustine was next. That came in the shape of 4x blue pills – not to be confused with other popular blue pills. They are given in a different part of the hospital…!

Lomustine (taken by itself) was my preferred option for this batch of chemotherapy. I was converted to PCV on the advice of Dr S~. 2x down, 1x to go – so far, so good.

The final drug, Procarbazine, is given to you to take at home. I was also given anti-sickness pills and steroids, a polite reminder that the gut wrenching was probably still to come. Procarbazine is the element of PCV that a lot of people have a reaction to (allergic or otherwise) so I was extremely happy on the following morning when I woke up trouble free. I did stir in the night, suddenly realising I could/should be feeling sick but that wasn’t the case which was great. 

I’m happy to report that all 10x days of Procarbazine passed without any sickness. The makeshift sick bowl from the kitchen unused. The steroids disrupted my sleep and I did suffer some constipation but they are pretty minor side effects in the big scheme.

I continue to use The Brain Tumour charity’s BRIAN app to log how I feel physically and mentally. There are sliding tabs for thinking ability, tiredness, your memory as well as options for how your feeling emotionally. It’s good to use on chemotherapy, it shows potential and recurring peaks and throughs of a cycle. For example, don’t call me on days #5/6, I seem to be fed-up and annoyed on these days. You have been warned!  

Let’s fast forward…

I’m sitting here today, 27x days into my PCV cycle #5. I appreciate that’s quite a jump in time from day #1 on 5^th March to 2^nd October (today) and apart from 1x blip, I’m happy to report I’ve only had minor side effects from P, C and V. In fact, I started to question whether it was actually working so I was delighted to hear the results of the MRI scan in June which showed the white dots/spots (unveiled in February) had now disappeared. 

I have suffered with decreasing levels of platelets which, as of cycle #4, reduced my intake of Procarbazine by 25%. My most recent blood test showed low red blood cells as well as low platelets. This could result in needing a blood transfusion or delay of cycle #6.

The 10x days of treatment per cycle are hard to define. Official paperwork or answers in forums about side effects almost always differ. Personally, I compare it to having a hangover or an alcohol or chemical comedown and what 1x person needs or craves to feel better is often different to somebody else. 

I eat my way out of a hangover. I crave fast food. Forget PCV, I want KFC! I know for a fact there are other people who can’t bear the thought of eating with a hangover. It turns their stomach. It settles mine.

So, fueled by bargain buckets I’ve remained feeling okay, both physically and mentally. I’ve suffered with some tiredness and the more Procarbazine I take, the more I wince, but I can’t complain.

I’ve played by the rules on treatment days but outside of those I’ve socialised, exercised and even been to work! That may not be the case in the future, not all 3x simultaneously anyway.

Talking of exercise, I still plan to run the London Marathon. I have been in 2x minds since beginning PCV but after the positive scan in June and the blessing(-ish) of both my neurologist and oncologist, I have continued basic running (very different to marathon training) and will hopefully be on the start line on Sunday October 3rd.

That was the plan. However! Remember that ‘blip’ I referred to above? Well, blog #31 incoming…

Jx

Ava is getting on great. We’ve had summer trips to Norfolk, Camber Sands and a visit to see her sister Winnie in Shoreham. Here they are together. Awww!