Turning a Corner

Today is the 7th May which means it’s been exactly five months since cancer took a wrecking ball to my life, obliterating it unrecognisably into a world I had no preparation for or experience of. I don’t think the English language has evolved enough to offer words that can truly reflect the emotions of that time, if it has I’m yet to discover them.

Throughout the last five months my head has felt more akin to a centrifuge, relentlessly spinning in perpetual motion trying to process the term ‘incurable cancer’ whilst reading as much literature as possible to enable me to make informed decisions about my treatment plan. What I hadn’t appreciated is that I had been doing all this whilst battling debilitating drug induced depression. 

I have wasted so many days over the last five months trapped in a well of my own tears, refusing to leave the house, change out of my pjs or even get out of bed. On many occasions I said some truly awful, unforgivable things to my family in what I can now interpret as a feeble attempt to drive them away, the irrational hope being that eventually I would lose everyone close to me and I could slip away unnoticed. 

I wanted to stop feeling so utterly consumed by a sense of hopelessness. Before my diagnosis I was fortunate enough to have never experienced real trauma in my life so put the despair initially down to grief for the life I had lost and the situation I was now facing. But something wasn’t right, it wasn’t getting easier over time it was getting worse and I was losing more good days to bad. I remember one particularly dark evening when Ben, my brother, looked at me with a mix of fear and sadness in his eyes and said to me ‘Soph, obviously I expect you to be devastated by this news, we all are, but I always thought if anyone was going to challenge the whole thing and fight to stay alive it would be you. I don’t know why you’re giving up so soon?’ It broke my heart, neither did I. Something had to change and eventually on one of my better days I succumbed to numerous pleas from friends and family and agreed to speak to a mental health professional. 

My first meeting with my psychiatrist took place towards the end of April and proved to be invaluable but not for the reasons you would think. As part of my anti-sickness medication he noticed that I was being prescribed high doses of Dexamethasone, a steroid with strong mood altering side effects. He suggested I ask my oncologist to come off it or seek alternative anti sickness medication to see if it would make a difference. My oncologist agreed and last week was my first chemo session without it. 

On the day of my treatment I made my way to the hospital with much apprehension. This was my second session on the more stronger chemotherapy regimen and the last time it was administered, three weeks ago, and I ended up with a bowel perforation and a two week hospital stay. Plus this time I was to have it without the anti-sickness steriods so I had no way of knowing how I was going to fare. 

I didn’t have to wait long. Half way through the infusion of irinotecan (one of the chemo drugs) I found myself in a mad dash to the loo. I won’t disgust you with the details but I was there for a while!

As I staggered out of the hospital all I craved was to get home to bed. This was unusual as normally when I leave the hospital (and for the two days that follow whilst I’m still on the steroids) I often experience insomnia and a false sense of euphoria. It is only two day later, as soon as the steroids stop, that I would crash into a tailspin of irrational depression and uncontrollable suicidal thoughts. These feelings would linger like a black fog in my head for the majority of the chemo cycle until I had to start the process all over again.  

This round was different.  The two days that followed were ones of sheer hell. Euphoria was substituted for the kind of side effects most people associate with chemotherapy; terrible night sweats, fevers, vomiting…all of it had a bit part in this chemotherapy episode. But what changed was the days that followed. My head experienced a level of clarity that hadn’t been with me for five months and I felt great. I understood now why I needed to fight. More than that I wanted to fight. I wanted to continue with my research. I wanted to see if I could prove everyone wrong and beat the odds. I could see that I had nothing to lose by throwing everything at it. 

I know that there is one glaring question many people reading this will be asking; how did it take five months to get here? Why wasn’t Dexamethasone identified as an issue sooner? Well here is my first or bit of advice to anyone diagnosed with cancer. Be honest with your oncologist about any side effects you are feeling and if you don’t feel you can be honest with them find one that you can. You have to believe they want to keep you alive. This was a very difficult place for me to get to. I had to put aside my mistrust of doctors induced from years of misdiagnosis and my first oncologist certainly didn’t do anything to alleviate that apprehension. Under her care I felt like a statistic, it was clear she was overrun with patients but looking back now if she would have looked at my case more closely I believe she could have offered me a better treatment plan than the one she proposed…which leads me on to my second bit of advice, get a second opinion. Always. A good oncologist will recommend it in any case, in her defence, my first oncologist did.

Fortunately I live within the catchment area of the Royal Marsden and during my more positive days on Dexamethasone I was able to do enough research to convince myself that I should try to transfer my care to an oncologist there. Instantly the difference (for me personally) was immeasurable. Prior to starting the treatment the staff there explained to me that it was important that I be honest about my side effects. They reassured me that their aim was to give me the best quality of life for as long as possible and if one combination of drugs wasn’t working it wasn’t a sign of failure, it just meant they might need to switch some drugs around to encourage a better response. This was an important message for me to hear. Upon hearing it I realised why it had taken so long to admit I needed help, I was scared that it would be an admission that I couldn’t cope with the chemotherapy and they would need to stop it, leaving me with no treatment options and imminent death. I had no reassurance that this wasn’t how chemotherapy worked and no experience to tell me otherwise.

In addition to this the problem with mental health side effects is that it can be harder for the patient to identify that there is a problem and ask for help. Fortunately it was close friends and family who kept telling me I was different and that things weren’t right that made me see that maybe I needed to talk to my team.

I am so pleased I asked for help in the end. Since coming off the Dexamethasone my quality of life and outlook have seen such a shift I almost feel like Sophia BC (before cancer). I’m better company to be around (I think), I have enough energy and drive to start writing this blog and I can carry out all the research I want to to ensure I’m throwing everything I can at this bastard. Most importantly though these days I get out of bed and I get showered and dressed. I spend the good days at work or taking trips away and days out in London exploring all the great things this city has to offer (something I promised myself I would do when I moved here but never did).

I confess that the down days are still there, they always will be, but they are less frequent and more bearable. I recognise the pattern and do everything I can to swiftly put the negativity to bed and carry on with life and after five torturous months I’ll take that!