Cancer Column: Tumours, Transplants and Trials

It’s been a little while to let the “we’re not sure if you’re ever going to get better” news has settled and – oddly – things are relatively calm despite the constant chaos of news, preparing for treatment and trying not to freak out about potentially dying.

A standard CT scan a couple of weeks after the bad news (more of that news here) confirmed that the news was real, with a 2cm tumour dwelling in the cavity of my chest, closer to my heart this time and less forgiving than the original tumour. Hearing this, however, didn’t hurt at all. Maybe I’m just so used to hearing bad news now? All over again, in some bizarre Groundhog Day style illness, knowing I had a tumour lurking inside me reignites those same old feelings of feeling dirty, decaying and impure.

The word “terminal” hasn’t even been uttered yet, but when you’re in this world, you plan for the worst with reluctance and worry. I don’t want to die. Hell, I have so much I’m so ready to do in this world. I shrug off being called brave, but I’ve recently noticed that cancer patients develop a hard, hairless outer shell, not out of choice, but necessity. Though treatment makes you feel like death, it ignites a desire for life in every cell of my being.

The scar under my armpit and from the middle of my chest to the back are healing, despite nerve damage leaving half my side numb and the other side in excruciating pain. Pic shows where they’ve moved my muscle, hence why I look a little deformed.

Every time I confront this – whether in the form of treatment, mortality or just suffering demanding to be felt all over again – I find myself letting out fed-up sighs of fear of what’s to come. Cancer is getting harder to talk about, harder to see an end of and messing with my head more than it ever has done previously. I try to make my cancer blogs as funny as they (questionably) used to be, but finding humour in the tumour is harder by the day.

“The thought of my family celebrating Christmas without me hogging all the pigs-in-blankets, my little brother having nobody to beat on his Xbox (yes, I’m that bad), my boyfriend not being able to move on and not seeing me clapping with tears in my eyes when he graduates with his (super nerdy) PhD from University of Oxford or my face popping up on my best friend’s Timehop terrifies me. It’s imagining me not alive which strangely makes me want to be here anymore.”

There are so many articles left for me to write, RuPaul’s Drag Race episodes to desperately wait to watch and glitter to smother all over myself for me to be popping off anytime soon.

Despite this drive and fight, cancer is cruel and seems to pop up on every television advert, bus stop shelter, website advert or film I find myself watching. The one thing I’m so immersed in, yet so distant from always finds a moment to reappear visually, mentally or through pain.

So what’s next?

I’ve been offered a place on a trial appropriately called rEECur. Though at first it came across that this trial was a revolutionary new drug that would heal me in an instance, it’s merely the same different types of chemotherapy (different sets of different drugs set over different amounts of cycles every three weeks) but with the results recorded. Though this is a chance for me to use my personal disease to help further cancer research, the trial will eliminate any choice in terms of what treatment I want, meaning that I may not be assigned to the best chemo/most frequently used chemo for metastatic (spread) Ewing’s Sarcoma. It’s a tough decision between being selfless or, for once, putting myself first and knowing which is there right decision is tough.

I’ve also been told I may be subjected to a much rougher and radical form of chemotherapy which would result in a stem cell transplant. For those unaware, one of the gazillion side effects of chemotherapy is compromised blood levels. Chemo works by killing fast growing cells like cancer cells, but cells like intestinal, hair follicle cells and blood cells are all collaterally damaged, resulting me in having a problematic immune system and a hairless noggin.

https://twitter.com/deanvictorr/status/879341953623707648

This radical high-dose chemo is five times harder and stronger than previous chemotherapies I’ve already received (which, in my head, seems completely impossible with how dreadful my standard chemo was and how weak it made me). It’s yet another blow riddled with anxiety, fear and exhaustion of becoming an extremely ill person all over again. After getting my bone marrow to produce excess stem cells and then harvesting them a couple of months in advance, the transplant would reset my blood levels and help them get out of dangerous levels (known as neutropenia) when my blood struggles to regain to a healthy level due to the severity of this type of chemo.

The doctor who told me this, an apparent haematology expert who has seen under ten stem cell transplants for Ewing’s Sarcoma in over 20 years, redefined what it means to be pessimistic, casually explaining how this chemo could kill me, cause various seizures and fits and – despite all the stress, pain and suffering it would create – only had a third chance of working.

Alternative treatments have introduced themselves into my life (which I shan’t be discussing just yet), that are just a comical as expected (yes, I have to shove tablets up my bum three times a day). More of that later, but anything – alternative, mainstream, dietary or habitual – I’m trying, fighting and making sure my ass remains well and truly on this planet.

My cancer spreading has stressed the uncertainty of life and how health is such a privilege. This week, tell your mum you love her, make an effort to text your friends back and appreciate every moment you have. Yes, the bus being late, it raining and your friend cancelling on you sucks, but take a step back and express gratefulness in all you have.

‪Life is so beautiful and it breaks my heart that I’m only learning this when it’s almost being taken away from me.‬

And? In the meantime? Well…

You can read more of Dean’s cancer blogging, from day one of chemotherapy, to flying over to America for treatment and balancing good and bad news here. You can follow him on Twitter here.