It’s been 12 weeks since I was admitted to hospital with fluid on my right lung; since my cancer returned; since my worse fears were realised…again.
In many ways the time has been short. The weeks have slipped past in a blur tinged with all that a recurrence brings…fear, anxiety, pain…
However, in the same breath I can assure you that the time has been slow. I have savoured each moment and, in doing so, I have allowed that same fear, anxiety and pain to be smothered by love.
Now, let’s not let the reality of the situation slip from sight. In these 12 weeks I have dealt with some dire news and statistics. My disability benefits were raised as I moved from a ‘normal’ case to a ‘special rules’ case. On the one hand… I have a little more money each week to buy groceries, but, on the other hand, I know what ‘special rules’ really means. On the Marie Curie website it states that these are applicable “if your death ‘can reasonably be expected’ within the next six months.”* It’s hard to be excited about a little more money coming into your bank account each week when you know what the true cost is.
I also had the assessment of my mobility needs moved to the highest score. I did call them and explain to them that I am a yoga teacher and that, on good days, I am very mobile. The response wasn’t entirely sensitive…”I’m sure as a practitioner [an easy error to make as my title is Dr due to my PhD] you understand your prognosis and what it means for your mobility scoring”. Well, as a non practitioner, with a recent recurrence, I heard them loud and clear…another reminder that they expected me to die. On the plus side, I was told, I no longer have to pay for car tax and I can get a blue badge to allow me to park anywhere I want. Excuse me while I hold back my excitement – yes I’m still as sarcastic as ever.
Many of you already know that I’ve never discussed my prognosis with my oncologist. I don’t want to be labeled as a statistic and I don’t think it’s fair on them, or me, to have predictions made that no one can realistically make. However, I know that when I was first diagnosed that my prognosis was ‘terminal’, and I know that when I had sepsis following my surgery in 2016 that I had a ‘less than 30% survival channce’. I also know that only 17% of women with stage four ovarian cancer survive 5 years and that, according to Cancer Research UK the ‘mean time survival’ of someone with a plural effusion on their lung (i.e. fluid) caused by an ovarian cancer recurrence, is 3-4 months.
I guess, I had always thought I was one of the women in the 17%. After all, I am young, fit, healthy (aside from my cancer), I don’t smoke or drink…I was doing everything ‘right’…wasn’t I?
I had a chat with a surgeon recently who said
“so many women think that when their cancer comes back that they did something ‘wrong’, that if they had tried a little harder then they would have been cured. This is untrue. Their cancer didn’t come back because of something they did or didn’t do. It came back because it is an insidious disease.”
This was very helpful advice that I wanted to share with you because it removes so much of the guilt we naturally feel if our cancer returns (or, indeed, if we get diagnosed in the first place). YOUR CANCER IS NOT YOUR FAULT. You did not do anything wrong. Do not ever blame yourself or waste a second of your beautiful life feeing guilty….EVER.
Now, with all of this news I’m sure it would be perfectly natural for me to finally fall into that pit of despair and say “I’ve had enough” and, I’m not going to lie, I’ve teetered on the edge of the metaphorical cliff more than a handful of times recently, only to be pulled back by the people that I love, and who love me in return. But, I’ve realised life is too precious to waste wallowing in self pity…especially when we realise and accept that all of us only have a limited time on this beautiful planet.
So, instead, as best as I possibly can, I’ve tried to see the beauty in this journey I’ve been on since I was told my cancer has returned and I’ve tried to remind myself that the experts are not always right….and neither are the statistics. After all, I was told that the fluid on my right lung would return in a couple of weeks and that I would need to have it repeatedly drained, have my lung flushed with talc and possibly consider a permanent drain being fitted…however…it’s been over three months now and yet my lung remains clear…without any drug interventions….make of that what you will…
For me, this certainly brings me the belief that anything is possible and that today is not the end. This is what gets me through each day with so much positivity; the realisation that I am still here. I’m still breathing. I’m still laughing. I’m still LIVING.
I used to worry that I had to constantly remind people that I have ‘stage four ovarian cancer’; fearing that if I didn’t mention this alongside the pictures of me smiling and laughing that they would not only forget but that they would think that I was in denial. Denial felt like a dirty word. I didn’t want people, least of all my medical team, to think that I was in denial, that I didn’t grasp the reality of my situation, that I didn’t ‘know’ what it meant on paper. I didn’t want any of the people around me to feel denial either, I wanted to constantly remind them of my situation so that I could try to control their reality; so that I could ensure they understood; so that I could make sure that they were prepared.
However, I have recently come to two realisations that have since changed my perception of all of this bullsh*t that I was constantly feeding myself…
Firstly, denial is not a dirty word. In fact, I now believe that ‘denial’ is just another word for ‘hope’. It’s the beautiful belief that anything is possible right until someone takes their last breath. Hope is not a dirty or shameful word. In fact, it is probably one of the most beautiful words in the English language.
Secondly, no matter how many times I write the words ‘stage four cancer’, I cannot prepare anyone, I cannot control their response and I cannot prevent their ‘denial’ because that isn’t what they are feeling either. The people who love me are feeling hope too and the fact that people have hope for me on my journey is the most beautiful gift anyone can ever give me.
Your belief in me feeds my own hope and gives me the much needed strength I need to get through each day.
So, today, I wish you all not only love and light but I also wish you an abundance of HOPE.
Where there is life, there is hope.
Remember that I post more regular updates on facebook. xxx
*it is worth noting here that if you fall into this bracket and don’t receive benefits then please speak to your heath care provider or visit your local Maggie’s Centre where you can receive free financial advice.