Like others having chemo, I was given an appointment schedule to follow for the six months. With treatment travelling along nicely, I naively assumed this timeline was set in concrete. By the end of chemo session 3, I had confidently penned in (rather than pencilled) future appointments, some social activities and my return to work based on the 6 month forecast. My sister/taxi driver organised her time off work to deliver me safely to the sessions. I was too busy loving the ‘smooth sailing’ of the adventure so far that I had no idea of the storm clouds ahead.

A word of warning. If you are undergoing long term chemo, be prepared to be flexible and ride the waves as they come. By the end of December my schedule was a month behind and what initially was to be ‘done and dusted’ by April ended up stretching out until August. Six months of chemo ended up being nine months for quite a few reasons.

Now, it would be easy to blame COVID for some of this, but in my case I actually never contracted it, so it didn’t play into the delays. Obviously the tooth situation I mentioned in an earlier blog stalled treatment for a while. However, the biggest issue for me was my reaction to the chemo chemicals. Before each chemo treatment session everyone needs to have blood tests to check a whole range of things. Only if results are all clear will they continue with a session. (I have added a link to some info on this at the bottom of the page.)

So, after my initial treatment I had been back for quite a few chemo sessions with no issues what-so-ever. I will segue here and talk a bit about what actually occurred for me in the sessions prior to the ‘wheels falling off’.

At each session, the staff had each persons personal data up on a little portable computer screen that they could whizz around the room to be near each patient’s chair. That meant, if like myself, you were a little bit nosy, you were able to read your own results from the pre-blood test. Obviously I am not medically trained in the slightest, so initially my data made no sense to me at all. I just trusted all was well. However, I’m a bit of a researcher (not to mention a slight Dr Google fan), so I began asking maybe way too many questions at each chemo treatment about bits and pieces on the screen. Plus I wasn’t backwards in coming forwards when it came to asking about medical terminology I was hearing in conversations. I’m sure many of the Cancer nurses were mildly annoyed by this, but as I was able to understand their answers (or fake that I could understand their answers) most of them humoured me.

I also like observing. Sitting in the centre chair for six hour chemo sessions, the ‘brick’ removal sessions and ‘picc’ cleaning sessions every fortnight had given me a rare opportunity to watch other people as they went through their own process. Because there was very little privacy I really did get a glimpse into various people’s response to chemo being administered.

I saw a man coming in for his sessions, only to ask each time would he be out by x so he could get to the building site in time. That was fundamentally impressive to me. I saw a first time patient react really badly to the chemicals. I was left attached to machines for an extra two hours whilst paramedics and specialists were called in, with the Cancer nurses doing all they could to help. I don’t know what happened to him. I saw a wonderful woman, maybe 70, who like myself, was also doing long term chemo. I’d see her every week for a while as we had the same schedule. Every session she would be knitting and then would bring out a little lunch box with fruit and lovely snacks. We never spoke but I really admired her. I was so not up to bringing fruit and snacks. One day I remember I had a woman next to me who only had a short time to live. She was being given blood transfusions in the hope of giving her a little more time. The Cancer nurses pulled curtains around her for privacy. That one hit home.

Anyway, by the time my ‘wheels started falling off’ I was pretty much at home in the Centre and on top of understanding my readings on the whizzy little computer screen. I settled into my chair for my next session and on the screen I could see my liver readings were high. Very High. So not a good sign. These are known as bilirubin readings (which I was already familiar with having had severe glandular fever when I was younger). This is a brief layman’s explanation but liver and kidneys often start to struggle during chemo because they can’t keep processing the heavy chemical toxins that have been building up in the system quickly enough. It puts a persons organs under a fair bit of strain. Bilirubin levels are used as a warning system that this is happening. I could read the screen data. It wasn’t politely saying “we might have a bit of an issue”. It was screaming “Danger, Danger! We have a major problem!”

I knew in my heart that I was not going to be having chemo treatment that day. Damn you liver! Initially the first Cancer nurse looked at the screen and was ‘umming’ and ‘ahhing’ and then began to set up for treatment. I actually said to her “With my liver levels up that high should I be having the treatment today?” Yep, I think I was probably a very annoying patient. She grumbled a bit, then went to consult with the unit manager, who then rang my oncologist and you guessed it. My heart was right, my liver not so much. My session was rescheduled for a weeks time to give the liver more time to rebound.

Whilst my liver was great for the next two sessions, it really began to struggle for the rest of the program. So by the time February came around I was continually needing to be rescheduled to ensure my good old internal organs were able to undergo another session.

I sometimes wonder if in hindsight the rest of the schedule should have been reorganised at that point to a three week cycle. It wasn’t however, because my oncologist said essentially I was very ‘healthy’ compared to many patients. So the remainder of my treatment almost became a bit of a game of ‘pot luck’. For the rest of my chemo journey, during many a blood test, “Come on fabulous little liver” often followed by “Damn you liver!” became part of my vernacular.

The silver lining to all this was that I did get more ‘good’ days a cycle, and ultimately I am here ‘blogging’, which unfortunately isn’t always the outcome for many people when it comes to cancer. I am beyond grateful for that.

For more information on ‘Tests when you go for your treatment.’ please click on the link below and scroll down to the information.

https://www.cancerresearchuk.org/about-cancer/treatment/chemotherapy/planning/chemotherapy-tests