Interview: Kimia Etemadi

Content warning: This blog post talks about mental health, OCD, anxiety, survivor’s guilt and death.

Welcome to an introduction to the Candid Cancer Collective team!

A current photo of Kimia, wearing black trousers, a black cardigan and red, white and black top stood outside in a garden.
Kimia from 2013, with a shaved head in a hospital bed.

What is the specific type of cancer you had/have, and at what age were you first diagnosed?

I had Burkitt lymphoma, a fast-growing and aggressive type of non-Hodgkin lymphoma. My cancer was Stage 4, the final and most severe stage. I was 21 when diagnosed—it was just a few weeks before my 22nd birthday and graduation from university.

How did you notice you had it—for example, which symptoms did you first have?

I was going to my university’s Graduation Ball with a few friends and decided to have my hair in an up-do. My mum took photos of us ready for the party before setting off from my house. When she later showed me the photos, she asked me why I held my neck in such a weird way. I said that I didn’t. So she thought I’d just gotten fatter. But then she touched my neck and there was a lump. I hadn’t even noticed it because I usually had my long, wavy hair down, but for this party, it was in an up-do.

We went to A&E because we thought I had Mumps. After some biopsies, it turned out to be Stage 4 cancer. I wonder sometimes, if I hadn’t worn my hair up for the Graduation Ball and Mum hadn’t noticed, would I still be here today? Maybe I wouldn’t have noticed in time.

And since my cancer was so advanced and aggressive, if I hadn’t started my chemotherapy as soon as I did (just a couple weeks after diagnosis), the doctor said, I would have surely died.

 Even with treatment, they said, I had a 50:50 chance of survival. As soon as the doctor said the word ‘cancer’, my mum burst out crying, but I started making jokes, saying that I couldn’t die, because I’d already bought my diary for the next year. It was only later that evening that the reality of my diagnosis suddenly hit me and then I was really frightened, but tried to stay positive for my mum.

Kimia with her hair up, in a black and white dress. This photo helped Kimia and her Mum realise something was wrong because her hair was up.

Kimia and her Mum with shaved heads. Kimia’s Mum kept shaving her head in solidarity with Kimia, until it started to grow back.

Are there any experiences of treatment you would like to talk about?

Since I suffer from really severe Obsessive Compulsive Disorder, and my chemotherapy treatment had to be as aggressive as my cancer and I had to stay in hospital for months, I suffered double because of the side effects of chemotherapy on top of my OCD.

Many other young people on the ward only needed to come into hospital for the day, get treatment and then go home, but I was an inpatient for months and sometimes couldn’t come home for weeks. The doctors and nurses, who were really lovely, joked that I had become a part of the furniture.

At first, I had to share a ward with other girls, and this meant a shared bathroom, which made my OCD really bad, because whenever I saw that any accidents had taken place, I would stop myself from using the bathroom. I have always had a fear of hospitals, too.

I also had many accidents. The first time I woke up and realised that I had wet the hospital bed because of all the fluids I was plugged into all the time, and because of having asked for a sleeping tablet the night before as I found it hard to sleep on a busy ward, I was so embarrassed that I started crying, but the nurse was so lovely and gave me a hug.

There were other frequent accidents involving all sorts of bodily fluids, from the top and bottom. The chemotherapy being very strong made me very sick all the time, and there were many other horrible side effects, such as the Clostridium difficile infection that I developed which caused colitis, which still flares up often today alongside IBS and is very painful.

I had ulcers all inside my mouth and in all my insides, which made drinking even a sip of water unbearably painful, so I simply stopped drinking and only had fluids intravenously. It even hurt to speak. A nurse once came to ask me something, I forgot about my mouth ulcers and tried to answer, and blood started pouring out of my mouth.

I also had such horrific migraines after painful lumbar punctures that I would have to lie down in complete darkness for hours or else feel such pain that I would faint.

One rare night when I was allowed to come home, I wanted to sleep next to my mum like when I was a child, and after midnight I woke up with really severe heart palpitations, so we rushed to hospital and it was confirmed that I was about to have a heart attack.

I lost all my hair, being completely bald for months, and my mum had her head shaved in solidarity several times until mine started growing back. It was incredibly sweet of her.

It’s so true that chemotherapy ‘makes you ill to make you better’. I became so weak that I nearly died on many occasions because of how badly the chemotherapy affected me.

How has cancer affected your overall quality of life and ambitions in life?

I realised just how short life can be, having sadly witnessed so many other young people at my hospital die, many much younger than I was. I still struggle with survivor guilt, especially when my OCD and anxiety are really bad. I often think to myself that it should have been those young people who survived instead of me.

During treatment, I was so depressed that I often didn’t want to live anymore. Every 24 hours seemed like an eternity, especially at night when my mum and other visitors had gone and it was just me in my hospital bed, crying.

As I finished chemotherapy and was allowed to come back home, this ‘carpe diem’ mentality took over, and I decided that as soon as I was better, I would start to do more of the things I love. And so I started travelling to more countries, learning various languages, trained to become a teacher and studied for two Master’s degrees.

Later, I also found the confidence to finally come out as bi which I knew I had been my whole life. It was a huge relief to get such positivity, acceptance and warmth from my family and friends. I wish I had done it sooner!

Kimia standing next to her Mum at graduation.

What are the side effects most difficult to deal with?

No matter how many years have passed, I think all cancer survivors have the same fears every day. The smallest change in your body rings alarm bells.

I still struggle with fatigue, and sometimes I worry that people just think I’m lazy, but the ‘spoon’ analogy is so true in that if I use up all my spoons in a day, I can’t do anything else because I’m so exhausted. I have a constant lack of energy.

For the entire duration of the COVID-19 pandemic, I’ve been on the government’s shielding or ‘extremely clinically vulnerable’ list. My mum has had to do all my food shopping, and this loss of independence has been difficult too. Before the pandemic, I worked in China, and also previously in Belgium and France, so I lost a lot of independence but I knew I had to shield because of my history of blood cancer.

My hormones have been out of control since cancer treatment, so I still have to visit endocrinology clinics regularly, and the side effects like excess hair, non-stop weight gain and low mood have all made me much less confident in myself and my appearance.

I also know that I’ll start menopause very soon, which seems unfair compared to other people my age who have years of fertility ahead of them.

What do you hope would be a positive thing to come out of creativity such as making a zine, or any other creative things you do?

I love all kinds of creativity. One of my hobbies is writing, which I also do for a living at the moment. I also love to do calligraphy and hand lettering. Whenever I do anything like that—even if it’s just colouring in (actually, when I was going through cancer I started colouring again like I did when I was little, and everybody laughed because I was 21, but then just a few months later, ‘adult colouring books’ became popular so I said ‘Ha! Who’s laughing now?’)—it takes my mind off the realities of my illnesses. That’s why I’m so excited about making my first zine, and I think it’s a great opportunity to talk about something so important to me: cancer.

If you wish to talk about it, how has cancer changed your love/sex life, intimacy and so on?

At first I was worried about dating again, but as my confidence increased after coming out as bi, I thought: this is me, and if prospective partners act weird about my cancer history, then fuck them (as in, don’t!). As soon as people see my scars from my neck biopsy and also where I had my Port-a-Cath, they ask and I tell them the full story.

Luckily, I’m in a loving relationship now with someone who doesn’t treat me differently just for having had cancer.