OCAM - Handle with Care - a Spoonful (and the Rest) of Nasty Medicine – Part 1

Date: 07 March 2016

Whilst my surgeon had made it clear the cancer was not curable it was still difficult to hear my oncologist describe the purpose of chemo as being to ‘control’ the cancer. What I wanted to hear was it was going to blast those remaining cancer cells to smithereens.  Hearing this prompted plenty of dark thoughts. What’s the point of buying new clothes if I might not be around for long to wear them? Aren’t I better saving the cash we have to help make it up to the kids for their loss when I’m gone? What should I start doing in preparation for my death? What sort of funeral would I choose?

Three weeks went by post-surgery and I again became eager for something to be actively done to combat the residual cancer cells, despite being apprehensive about what was to come. It was five weeks after the surgery that the surgical consultant deemed me adequately recovered to embark on my six cycles of chemo. My oncologist agreed we could go ahead with a long weekend in Bruges, which we had booked months earlier to break the journey back from our summer holiday in France. It may not have been the two week holiday we had planned but two nights away was a welcome get away for us all. Yes, I was still physically recovering from the surgery and apprehensive of being out the country, away from my healthcare team and information held on my condition/treatment, but the need to salvage something in the way of a holiday for the boys was overwhelming – stupid as it sounds I had visions of my eldest being asked to write about his summer holiday on his return to school and writing something along the lines of “mummy was really poorly so we didn’t do anything”. Thankfully the oncologist scheduled my first chemo for the day after my youngest child was starting school, allowing me to share the milestone of his first day at school feeling relatively normal.

Prior to commencing the chemo, my oncologist talked me through some of the common risks associated with the drugs I would be having.  As if that wasn’t enough to fill me with dread, the detailed information sheets I was advised to read about each drug listed some of the less common risks. Whilst I appreciate healthcare professionals are required to make people aware of the risks it was all a bit overwhelming, after all if I was unlucky enough to have ovarian cancer in the first place then I was possibly unlucky enough to have the worst side effects imaginable. My oncologist did try to reassure me by advising that everyone reacts differently to the drugs and that there is something that can be done to counter most of the side effects (hair loss aside). Yes, there was a risk that if I experienced nerve damage it could be permanent, but none of these risks changed the fact these were the best drugs available to manage my cancer. 

In my naivety I had always assumed chemo was a single type of drug – I’ve since learnt there are a whole array of chemo drugs which are prescribed for different types of cancers and are administered in different ways and at different intervals.  I was prescribed six cycles of chemo (Paclitaxel and Carboplatin), administered intravenously as an outpatient every three weeks.  In addition, I was to have Avastin over 22 cycles (every 3 weeks); this has since come to be referred to as my ‘maintenance drug’.  

I found I became irritable prior to each hospital visit for the chemo. This was anxiety, initially around what was going to happen and how I was going to feel afterwards, and then as the cycles went on, anxiety because I knew exactly what was going to happen and how I’d felt, with the strong likelihood of feeling worse than the previous cycle. 

I elected to visit the hospital the day prior to my chemo to have my bloods taken so they could confirm whether I was in a position to have the chemo the following day as planned. Somehow I managed to avoid picking up any infections during my chemo and my immunity recovered by the end of each cycle sufficiently for me to proceed on my 3 weekly cycles as planned.  Throughout my chemo and beyond I found myself subconsciously scanning everyone who came within 10 metres of me for any outward indications of infections or illness. This would often lead to awkward moments where I identified a perceived risk but couldn’t remove myself from the situation swiftly.  Often it was a case of not wanting to disclose the fact I was susceptible to infection as a result of chemo for often the people in question were unknown to me.  How the boys managed to dodge colds and coughs for several months I don’t know. My oncologist gave me examples of situations and places I should avoid to minimise my exposure to infection but I still found it hard to make judgments. On the whole I was fairly risk adverse but when faced with the prospect of missing the boys’ Christmas nativities at school I ran the risk of immersing myself in a warm school hall along with 100 children and 200 parents, feeling spaced out from the chemo and trying not to breathe too deeply! 

My hospital visits for my chemo went from initially being a nine hour day to just over six hours towards the end of my chemo course.  The initial chemo sessions were always going to be longer as one of the drugs had to be administered at a slower rate initially in the event of any adverse reaction. I felt jinxed on the first two occasions as accidents on the M62 saw a delay to the arrival of the chemo drugs to the hospital which meant it wasn’t possible to start as early as planned.  I distinctly recall first seeing the drugs being delivered to the oncology ward, emblazoned with cytotoxic warnings and opened by nurses in protective gloves and aprons.  It didn’t feel natural to be having something so harsh put into my body. At my first chemo session the nurses ran through all the signs I needed to watch out for. The hospital had a 24 hour phone line available for chemo patients to discuss any side effects or queries. I was advised to get a decent thermometer as I needed to monitor my temperature closely and call the hospital if it went above 37.5c as it indicated a potential infection that needed medication.  I became slightly obsessive about taking my temperature in the few days following my chemo but luckily my temperature was never a cause for concern.

I was advised to keep a note of the symptoms I experienced after each chemo dose on a day-by-day basis. This was useful in recalling the nature and pattern of symptoms at my next oncologist appointment and was helpful in demonstrating a pattern with each cycle that enabled me to plan in things for my better weeks. I’d see my oncologist just prior to each dose of chemo, reporting on how I was feeling and how I’d faired in the aftermath of the last chemo dose. In my head there was always the concern that something I reported could cause alarm and potentially result in a change to my dosage/drugs (and ultimately reduce the effectiveness of my treatment). It was after the second dose of chemo that I started to feel odd sensations in my hands and feet from time to time. It was a similar feeling to when I’d had Carpal Tunnel Syndrome shortly after both the boys were born – I had to consciously focus on gripping mugs when I went to lift them out the cupboard and from time to time I’d lose the feeling in parts of my hands and feet. My oncologist wanted to keep an eye on this particular side effect. If it got too bad then he would need to consider changing my chemo dose – thankfully it didn’t get worse even though it continued throughout my chemo. I’m convinced it was exacerbated by cold weather but that might just be my circulation deteriorating with age!

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