Saturday, 16 January 2016

My Treatment: part four.

Chemotherapy round three - FLAG-IDA

As Christmas approached I was acutely aware of how much of autumn I had missed. Autumn is my favourite season, and it was very strange to not be a part of it. I managed to have a couple of weeks of normality, buying a Christmas tree, decorating the house, seeing friends and family, etc. Then, on 15th December I was admitted again for my third and final round of chemo, another dose of the FLAG-IDA protocol. Again the admission and administration of the chemo was uneventful and I was discharged home for my recovery and to spend Christmas with my family on 21st December. The next day on 22nd December Matt and I attended an appointment at the Queen Elizabeth Hospital in Birmingham to discuss my upcoming stem cell transplant and the date was set for 2nd February 2015.

The appointment was terrifying. They talked me through all of the possible complications, which included: sickness, diarrhoea, mucositis, alopecia, infertility, low blood counts, infection, bleeding, viral reactivation, Graft-versus-Host-Disease, death (15-20%) and relapse (30-35%). The chance that my leukaemia would be cured (i.e. the chance that I would be alive and cancer-free 5 years after my transplant) was 50%. 

We walked the ten minute walk to Ellis’s house almost without talking. We were both completely shell-shocked. We had never concerned ourselves with statistics because we both knew that anything you read online is probably wildly inaccurate, out of date and only relevant if you’re an entire population, which I am not. I am one person. One person with a 50/50 chance. As much chance of dying as of living… but crucially, as much chance of living as of dying.

Christmas came and went, I spent the day with Matt’s family and the evening at home with my parents and siblings. But two days later, on the 27th December I was at Matt’s house (which is now also my house but we didn’t live together then) and I began feeling unwell. I went and lay in bed for a few hours and I knew I was developing an infection. I checked my temperature and it was within the normal range but I was wrapped up in a dressing gown and fleece blanket and I was shivering. Matt rang the hospital and they advised us to go to A&E. I got there and my temperature was in the 40s. They diagnosed neutropenic sepsis and started me on IV antibiotics before transferring me to the haematology ward. 

I was subsequently in hospital for the next five weeks with numerous infections, and it wasn’t until recently that I realised how sick I actually was. My counts had not recovered after the FLAG-IDA so I struggled to fight any of them off. I had severe perianal soreness with generalised inflammation which no-one could get to the bottom of (pun not intended!) despite numerous CTs and MRIs. My blood cultures grew klebsiella pneumoniae, a nasty bacteria which caused me to develop pneumonia and a urine infection. My second Hickman line was removed, but further bloods and urine grew e-coli. I was given a smorgasbord of different antibiotics and anti-fungal infusions but I continued to spike high fevers. 

This was the time that everyone was worried about me. When people are worried about you they fuss over you a lot. When you have been in hospital for more than a few weeks, you don’t want people fussing over you and you start to rebel. I occupied myself for a whole week in January by having a passive aggressive war of attrition with my nurse over my fluid balance chart. Since my very first admission I had been responsible for completing my own chart - I filled them out all the time at work and it wasn’t a difficult concept to grasp. It kept me briefly entertained, gave me some sort of purpose and also prevented me from having numerous mind-numbing conversations every day regarding my piss. All the nurses and HCAs were cool with this until a new nurse, who was lovely and didn’t deserve my intolerance and grumpiness, obviously didn’t get the memo and proceeded to complete my chart herself. Rather than just telling her that I was happy to do it, like any normal person would, I chose to glare at her and convince myself that she was trying to make my life a misery. When she had wrongly completed the chart I would very deliberately cross it out and mark the correct measurements. I would bitch about how incompetent she was to my mum and sister. I would rage if she left the chart outside my door rather than at the end of my bed which is where I kept it. My mum would try and placate me and would say that she really wasn’t that bad. I became a bit of a monster. But never to her face, I might add, it was generally a lot of pouting and glaring and two-faced bitching. 

In fact, the only member of staff I have knowingly and deliberately been rude to was a HCA who, around the same time as I was having my battle with new-nurse, treated me like an infant on a daily basis to the point where I flatly refused to talk to her. Once, she came into my room after I pressed my call bell because I was feeling unwell. I was lying under the blankets shivering like mad, my teeth chattering, my heart pounding, feeling sick. She raised her eyebrows and in a mock-baby voice said “naughty girl, has someone got a temp-witure?”... “No.” I said defiantly, through gritted teeth. She left and returned with a thermometer, it read 39C. “Aha, I knew it!” she cheered triumphantly “you need to start behaving!”. I could have jumped from the bed and beat her over the head with that thermometer right then and there. I had been in hospital over new year, I had been lying in bed, close to death for week and she was telling me that this was MY fault?! That I was causing HER a problem?! She was absolutely infuriating. After that day, I spoke to her only when she asked me a direct question. I didn’t have time for her shit anymore. I was done with it all. 

After about four weeks, my usually happy and bubbly consultant had changed to someone with a concerned expression permanently etched on her pretty face. She referred me to a psychologist and a dietitian. The psychologist was wonderful, the dietitian not so much. Then it was decided that I would have a granulocyte “buffy coat” infusion. It is designed to transfuse white blood cells to help fight off the infections. As I understand it, they are not given very often but it became apparent that I wasn’t getting over these infections on my own and my counts were still stubbornly not recovering. 

A few days later I began to feel better and my temperature was stable and remained within normal limits for a week. Then at 38 days post-chemo my counts started to recover. By this time it had become apparent that my stem cell transplant would have to be postponed as I would need a couple of weeks to rest and recuperate before the super duper chemo before my transplant. I don’t really remember those days before I was readmitted at the QE for my transplant, I guess I was probably just happy to be at home, in my own bed, eating my own food and hanging out with my family. The last night before I went in I wanted to do something normal so Matt and I went to the cinema to watch The Imitation Game which was a wonderful but tragic film about Alan Turing breaking the enigma code in WW2. I figured being in a ‘dangerous’ environment such as the cinema was worth the risk because a) I was about to be admitted to hospital and b) there was a 15-20% chance of death in the subsequent weeks anyway.


  1. Do you remember that day (around the end of this stint, shortly before you came home) and we listened to all those old songs and you were allowed to leave the ward and we had a great time down in the gift shop, and I'm sure you came back up with a balloon and a lolly from your big day out?! :-) that was a good day x

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