I’m in the last few days before I start my fifth cycle of chemotherapy. This recovery period has been a little tougher than usual. On the evening before I was heading to London for a week, my body got an infection off the back of chemo and had no immune system to fight it off, so I ended up in some quarantined room for a few days. My fingertips are all numb and feel burnt from one of the chemo drugs (so typing this feels a little odd) and I have pretty severe acid reflux but HEY HO. To trick my mind into a positive mindset (and after a few requests on Twitter), I’ve taken to listing some of the good things that have come out of this whole journey.
In no way is this an attempt to see this horrific disease through rose tinted glasses. Writing about my own positives does not diminish the pain, suffering and frustrations involved with cancer. Cancer has projected a million and one negatives into my life and does for most cancer patients. Without having a pity party, cancer has ruined the life I loved and knew a few months ago and it’s important to see my experiences as exclusively mine. Every cancer patient experiences a different plethora of events and feelings.
A lesson in other people’s kindness
Within six days, ten thousand pounds was raised from friends and strangers alike for my GoFundMe, with support from Neil Milan and Owen Jones heavily helping.
Jeremy Joseph, the mogul behind the G-A-Y empire in London, got in touch with my boyfriend having read our story and offered his services, declaring that he wanted to dedicate three nights to me to help raise money. It’s one of those moments you realise that there are some really bloody amazing people in the world. When I was first diagnosed, I spent hours and hours reading forums and blogs from other patients and this rhetoric of having the desire to give back kept popping up. I fully get what they mean now and really hope I can give something back to the cancer community/LGBT community as soon as I can. These events, of course, means my face is currently plastered all over Soho. An odd (and slightly comical) one.
There is too much kindness to articulate in a simple article, but I hope my actions during and after cancer allow all of those who have been so great to me see their kindness set off a ripple.
A pride for my community
I’ve always been shocked, shook and stirred by the strength of the LGBT community. I have always been close to my LGBT family in Birmingham, happily consider(ed) myself part of the queer scene there and (being a mouthy and opinionated gay journalist) have always had a desire to fight for my people through words. My date of diagnosis fell on the same day as a vigil for the horrific Orlando nightclub shootings. I found myself there with my boyfriend and a couple of my best friends, holding candles with hundreds of other morning LGBTQ+ people. It was that feeling you feel at pride, of connection to other people like you, but so much stronger, so much more integral and so so so much more significant. Now, I’m in the wait of heading over to Florida for treatment. I really hope I can visit the nightclub, to pay my respects and complete this odd cycle from diagnosis to remission.
LGBT visibility may be getting better in the mainstream, but within the cancer community, there seems to be next to none. Usually this would scare me off, force me back into the closet on the ward or suppress who I am, but if cancer has taught me anything, it’s that identity is one of the strongest factors in upholding a clear head, balanced mental health and drive to get better.
The LGBT community has been my backbone through this, the amount of amazing gays and gals who have supported me and visited me has been overwhelming and made all of ~this~ a little easier.
One of the charities I’ve had the closest relationship with is Sarcoma UK. From day one of diagnosis and the first blog I churned out in some cringe attempt to numb how I was feeling, they were so supportive, egging me on and making the whole process so much easier. Just being introduced to the Sarcoma UK team in their London offices and seeing just the tiniest bit of the magic they do was a bookmarked moment of “wow, there really are so many people trying to make the lives of Sarcoma patients so much easier”. A couple of weeks later, I saw that the charity’s first patron, Richard Whitehead, was to captain the ParalympicGB team in Rio. A distinguished sense of pride and excitement that there was some Sarcoma visibility in the public eye really drives a sense of community. When I first got sick, I didn’t really believe in this so-called cancer community people talk about, but there really really is one.
People often see cancer charities saturating advertising time on TV but not really acknowledge what they actually do. Teenage Cancer Trust pay for two nurses on my ward (who are absolutely brilliant) to help with the social and mental health issues masked within cancer treatment, as well as a good chat when you have no visitors. The charity also pay for my very ward itself. I’m on a young person’s unit that has a little more colour and life injected into it, with a kitchen, lax visitation hours, visitor rooms and a cinema room. It makes the week where chemo is being pumped into you that little bit more bearable. CLIC Sergeant have been great too, offering me support with finances during cancer treatment for both me and my family.
A NEW ENDURANCE AND PATIENCE FOR PAIN AND BAD NEWS
A pretty dark one, I know, but cancer has taught me how to deal with shedloads of pain, both physical and emotional. Cancer hurts, there’s no denying that, but it’s a pain that puts my fight into a perspective that makes me want to fight this more. That’s not to say that I’m ok with pain, but I’m better than I was before. (*cue Britney Spears // Stronger in the background*).
Before I was diagnosed, I had another dreary meeting with an oncology team, filled to the brim with ifs and buts of what I could (and clearly did) have. In the days where we had a little hope that the tumour would be benign, I had a standard blood test and, me being quite the wimp when it comes down to needles, made quite a scene. In the blur of nurses echoing the “sharp scratch” lie and a rather shaky me, the same nurse who eventually took my blood remembered who I was a few weeks later when I went back to collect my results. Clearly my wimpy-ness had quite a memorable effect on her.
Now, I’m a still a wimp, but less of one. Yesterday, I drew up, mixed together and gave myself a subcutaneous injection in my tummy. I mean, I don’t want to brag about my new found macho nature but… yeah.
Just mixed, drew up & gave myself my first proper injection. Doesn't sound like much but a HUGE small victory
A RECONNECTION WITH MY FAMILY
Like every uni student, when I left for freshers a couple of years ago, my bambi-eyed self didn’t stop to look back and lived life in a perpetual sense of onwards. I got so wrapped up in life in a big city and the beginnings of my career as a journalist that I didn’t really travel back home very much at all. I went up to almost a year without seeing my parents in a period of unpaid internships, assignment deadlines and messy nights out. One of the nicer things that cancer has done, is allow me to reconnect with my family (probably too much – they are definitely sick of me already).
And a reflection of who people truly are
When I set up my GoFundMe page to help cover the living and preparation costs for my few months away in America (more on that here), I was bombarded with a sea of supporters, sharers and donators; something I really didn’t expect. I originally didn’t want to set the page up. I hate taking from people, but my nurses and other patients who had received Proton Beam Therapy explained that it was imperative I did so. So I did.
The amount of love shown from strangers, celebrities and friends alike was intoxicatingly awe inspiring, but not everyone was too happy of the page. A select few bitter (and clearly insecure) set of Twitter users I had spent the weekend with before my first cycle of chemotherapy decided they would take it upon themselves to openly call me a liar and a deceitful person because, in their eyes, I was claiming I was raising money FOR the treatment, not the living costs. As these losers sat comfortably in their own homes, without knowing anything about what having cancer is like, tweeting this and that despite all being explained on the page and through various blog posts, I was struggling through a pretty tough fourth round of chemotherapy.
The positive from this? Cancer has allowed me to see a handful of people for what they are and has encouraged me to involve myself in social groups that are good for me.
When you resemble a 21st century Humpty Dumpty in skinny jeans, you find yourself hoarding a million and one different hats and caps. Before cancer, I NEVER wore hats, now I’ve had to sort of redefine my style to accommodate more accessories. Oh, and for any male cancer/soon to be cancer patients reading this worrying about dealing with the hair loss and how to transition into a life of hats, women’s hats are perfect. The six hats I wear most were all found in the gal’s sections of shops.
An appreciation for the NHS
Of course, we all love and admire the NHS and the very fact we have it is enough. When I find myself doubting that I’ll survive or if I’m having a particularly awful day with the side effects, I tell myself to get over it all, because I live in a country that offers me my treatment for free and a readily and accessible rate with some of the best technology available. My nurses are kind, trusting and so great at their job. It’s inspiring. We take our NHS for granted and we really shouldn’t, it’s our privilege, not our right.
I’m living out my last few days before chemo in London. Catch ya’ on the flip side.
WORDS // DEAN EASTMOND
You can follow my whole journey/previous columns here.
SUPPORT SARCOMA UK HERE.