OCAM - Handle with care - a spoonful (and the Rest) of Nasty Medicine – Part 2

Date: 08 March 2016

I tended to find the first couple of days post chemo weren’t too bad but I soon learnt that the worse was to come.  I’d find it hit me hard on days 3 – 5 post chemo when I’d feel lethargic, achy and spaced out.  For me one of the worst side effects was the metallic taste, which in itself sounds fairly innocuous but it impacted on the taste of all food and drink for up to a week after each chemo dose and lingered throughout the cycle thereafter but to a lesser degree. I had to drop my tea/coffee fix for a few days as the taste repulsed me. I tried numerous recommendations on what to eat and drink. I found citrus flavoured foods and drinks were the most palatable (as well as salt and vinegar crisps!).  I was advised to avoid food types I really enjoyed as there are claims eating them whilst experiencing the metallic taste can have negative connotations forever. I didn’t cut out everything I enjoyed and to date haven’t gone off them. 

During my chemo I was lucky to be able to have reflexology at The Sir Robert Ogden Macmillan Centre. I found it particularly beneficial when it coincided with my bad week, helping me to relax, easing the symptoms of the chemo, and just venturing out on my bad days gave me a sense of achievement and helped to dilute some of the negative associations I’d developed towards the hospital environment.

My dose of the drugs was to be consistent across the six chemo cycles. I was slightly alarmed when the blood tests results just prior to my second chemo cycle triggered a reduction in the dose of one of the drugs I was to have, due to a change in how my kidneys were functioning. I was assured this was not uncommon as surgery can temporarily cause a blip in how certain organs function and this was more than likely my kidneys returning to business as usual. Cue immediate, unfounded panic, that those few milligrams could make all the difference between the drug being effective. 

Whilst I was in the midst of the chemo I couldn’t focus beyond my six cycles. I felt I needed to focus on getting through it and to be honest the prospect of the scan at the end of it scared me. My oncologist discouraged me from thinking about the possible scenarios post chemo. If we started to talk in depth about all the “what ifs” I’d only worry about them – we’d address things as and when we needed to. 

My 40th birthday fell in the middle of my chemo treatment. At the time of my diagnosis I hadn’t made any firm plans for how I would celebrate. Not knowing how the chemo would affect me, I didn’t want to make any grand plans.  My fourth dose of chemo fell a few days prior to my birthday. My oncologist allowed me to move my dose forward a couple of days to avoid my really bad days clashing with my birthday. I was spoilt on my birthday with presents and well wishes but I felt rubbish. We made it out for some fresh air with the boys but I couldn’t face going out for dinner.   Thankfully I was able to make amends the subsequent two weekends when I was feeling slightly more normal.

During the low points of my chemo cycle I’d look to balance quiet time with catch ups with friends to try where possible to take my mind off the cancer and keep me positive. I’d ask a couple of friends to stop by when I was receiving my chemo to break up the day, I needed to have some of the time to myself to process the experience and indulge in some online Christmas shopping.  

Throughout the chemo the only real indicator of its effectiveness was the tumour marker level (CA125 test); the blood test after my first chemo showed that this indicator had continued to fall after the initial reduction stemming from the surgery.  Thankfully my tumour marker levels continued to reduce steadily downwards throughout my chemo before plateauing. With the ‘normal’ range for the tumour marker indicator being fairly broad it was unclear what I was aiming for as my baseline position, but once it fell within the range I started to feel slightly hopeful that the chemo was doing its job. 

I am well aware I was one of the luckier ones when it comes to the experience of chemo. I was able to lead a relatively normal life throughout the period I was having chemo; largely because the physical symptoms I experienced were on the milder end of the scale of what could have been and, because I was off work, I could focus on recuperation, but also because of the positivity I maintained, aided by my support network.  The side effects of the chemo did get slightly worse with each cycle but I was able to plan things for my good weeks and do some exercise.  Being able to go to the gym felt like I was doing something normal. It almost felt like an indulgence since exercise was often one of the first sacrifices I made when juggling work and home life pre diagnosis.  Turning up for my blood tests at the oncology suite in my gym kit felt like a small victory. Whilst having chemo I spent the entire four months contemplating whether or not I was overdoing things – I soon learnt that no one could be prescriptive about exactly what I should and should not do during chemo; I had to take things slowly and be aware of my limits.  Having been so closely focused on how I was feeling physically during the chemo period I think I’m now more in tune with my body and know what is and isn’t sensible. 

As my course of chemo progressed, inserting a cannula into my forearm to take blood and administer my drugs became more of an ordeal.  Ahead of one of my final chemo doses I think there were about nine different attempts made to find a vein that hadn’t collapsed from overuse previously, only adding to the anxiety about whether I’d be able to have the chemo as scheduled and whether it was actually going into me in the right place.

With my six cycles of chemo completed, I continued having Avastin administered every three weeks for most of 2015.  Alongside the drugs I was keen to do whatever I could to enhance my changes of keeping the cancer at bay. There is no shortage of theories on what helps and hinders, although much of it is not medically conclusive. I’m focusing on eating well, getting regular exercise, limiting my exposure to stress and generally looking after myself.  

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